Ronel d.J.

The first time I hurt my foot was November 2006. It was not treated properly by the doctor and was only in plaster for three weeks with no follow up examinations afterwards. My ankle was very sensitive from then. Time and again I would twist my ankle.
15 October 2010 I fell again and was in terrible pain from then. The doctors took x-rays and sonar. There was a broken bone that never healed and a torn ligament. My foot did not heal and I was in terrible pain always. I was referred to an orthopedic surgeon and he suggested that he do an ankle reconstruction. He decided to do the operation on 17 January 2011. I was in terrible pain 24\7 and bagged the doctor to do the operation earlier. He did not want to.  
I was operated on 17 January 2012. After the operation the doctor stated that he understand that I was in terrible pain because of a loose bone that went into the joint and was stuck there. I thought that everything will be fine. After 3 weeks I felt something was wrong with my wound and was very feverish. I could not get hold of the surgeon and went to a  emergency room. There was infection in my wound and at some places my skin was see-through you literally see my muscles through the skin. 6 Weeks after the operation the doctor told me that there is no reason why I could not walk, but I could not. He referred me for physiotherapy. After about another 4 weeks there was no improvement.

The pain literally drove me crazy and I still had a drop foot. I went to my house doctor out of desperation and she send me for new x-rays and referred me to my current orthopedic surgeon. The doctor who took the x-rays showed us the osteoporosis and me the diagnosed me with CRPS. I was then referred to my current doctor , a orthopedic surgeon who is currently treating me. I am his first patient with CRPS. He put me on 75mg Lyrica in the morning and 150mg at night and tramacet if the pain gets to much.
CRPS is now in both my legs. I  am trying to get a  appointment with a pain specialist, with no success. I try to cope but it is not easy. All the doctors here don’t even know what the sickness is. This battle is not a easy one and it is getting worse this, uphill battle. It is only the pages on facebook that helps me cope sometimes,
I also am not able to work for 6 months. I  may go off with ill health soon.
Waiting for a cure.

Tim T.

Hi, I'm a 48 yr old male nurse who has been living with RSD for almost 7yrs. 

I was once very active and always on the go, I had an upbeat outlook and always handled stress with ease.

I love helping others and to this day it continues to be the only distraction that eases my day.

RSD has robbed me of a lot of things in these past years; A relationship ( one I'm now very glad to be rid of), financial security,

confidence, my job, my mental well being... to name a few.

I don't appear to be sick to others, so they dismiss it when I'm down and out because of a flare up. I don't have the time to

be sick.

A new lady is in my life now, and she is a pure angel, a RSD angel to be exact. Her condition is much worse than mine

as she suffers multiple allergies, Fibro, spinal stenosis, hypoglycemia and is unable to take pain meds because of sensitivities.

She is the absolute bravest person I know, and I Love her dearly.

I try to help her as much as I can, her mobility is decreasing rapidly and her pain levels are through the roof. I see the frustration in

her eyes and it is all I can do to keep from weeping.

I know that this is where I'm heading someday, as my RSD is getting worse. What truly scares me is that I will not be able

to take care of her when she needs it most.

What is really odd is that I sometimes forget my own limitations, and I struggle with patience. I think I try too hard because I don't

want to face a reality. It feels like if I can make her situation better, mine will improve in symbiance.

I have watched others with RSD cope with living, I admire their courage and am filled with hope as I read the testimonials on this page.

I thank you for making this a reality....Gentle hugs to all sufferers.

Becky M.

In the summer of 2001,May 20th to be exact.I fell & severely injured my left knee...fast forward 9 years and many operations/procedures,my knee had had enough and at the ripe old age of 45 I had a total knee replacement.My recovery started out well,then seemed to come to a complete stand still.I was frustrated & angry that the knee replacement didn't seem to have helped me at all,in fact I felt worse after having it,instead of better.You see I have an extremely high pain thresh-hold,had cavities filled with no novacaine,had a small benign growth removed from the arch of my foot without lidocaine,etc.I just could NOT understand why I was in SO much pain,why I could not improve my range of motion.I ran out of coverage for my p.t and racked up a huge bill TRYING to make this leg bend.My surgeon was stumped at first,then my p.c.p sent me for a bone scan.Ta-Da!I'll never forget the night my surgeon called me after office hours to explain what they had found out from all the testing.C.R.P.S,my world came to a sudden stop.I knew about this disease,my brother-in-law has it,a friends mother has it..NOT me,please,but my despair was not for myself.All I could think of is how this will affect my family.I can deal with the pain(most of the time)but all the things I loved to do that now are challenges,all the things my husband has to do after working 12 to 16 hours a day,all the things I may end up missing out on with my kids.No more playing basketball with my son,taking walks with my family & our dog.All of that is what truly hurts me the most.I have an amazing supportive husband.I have 2 great kids.But I WILL NOT let this disease bring me down,I WILL NOT give it the power to rule my life.Thank you so much for this web-site,it reminded me that indeed RSD/CRPS DOESN'T OWN ME!!!

Jennifer A.

I have had RSD since October 2005. Although it was a work related injury that brought it on, I had many Doctors tell my employer they thought I had RSD. It was not recognized as my condition till 2010. I have been receiving a little treatment for it since 2008. My RSD started in my hand almost immediately following my injury. Over the years it spread up my arm. I was diagnosed with it up to my neck in 2010. Beginning of 2011 it has spread to my foot leg and knee and in my back. Basically, my whole right side is taken over with it. I have had many obstacles along the way, along with losing my marriage. I have three children, 21, 8, and 6. My youngest was only a few months old when I developed my RSD and injury. It was very devastating for me. Abigail only a few months old and my son was only 2. As many obstacles as I have had to face, I count my blessings today .... RSD is the hardest thing I have ever had to face but as much as I struggle to contain myself, I do have RSD but I won't let it have me or my family.

Mike K.

Hi my name is Mike and I have RSD/CRPS since 1994.I was hurt in an Industrial Accident,I had my right dominant hand crushed by 1500 pounds of steel.I had my first reconstruction done than 4 other hand surgeries within 15 months,plus 2 amputations.The RSD/CRPS spread to my arm,then my shoulders and back.A short time later I started with pain in my right foot and toes yep it spread.A few months later it spread to my left leg and foot.I was getting Lumbar Injections and Water Therapy. RSD/CRPS spread to 90% of my body my left hand and arm are unaffected.I had to be slowly weened off pain medication so I could have the Spinal Cord Stimulator Trial and I can say it helped I then had the Permanent Implant done it will be 9 years that I have the SCS.Before this I was walking with 2 canes and using a wheelchair depending on the day.My pain levels went from over 10 down to a three which I am very happy with.Right now enjoying life the best I can and Thanking God for every new day. Mike

Kathy G.

Hello! thanks for having this site! My name is Kathy and I am a happily married mom of a beautiful 20 year old daughter. I have had RSD now for 28 years. Bilateral legs, arms and back. I have 2 spinal stims, and a pain pump which has been removed due to malfunctions. Although the pain of RSD is relentless and horrific, I truly try to live a positive life. I have a blessed life. My husband loves me with a fierce unconditional love. He makes me laugh when I need a giggle. We share everything together...good and bad. Our daughter is our gem. Although I have been in and out of the hospital constantly all throughout her life, she, thanks to my family (and husband's family) has never needed anything when I was not home...including hugs, kisses and a shoulder to vent on. She could of chose a wrong path to follow...but thankfully, is a leader. she graduated School president from High School. she is an amazing kid! I pray that one day we will see a cure...and this barbaric pain will end. Until then, I count my blessings, as I have many. I wish everyone pain free days and sleep filled nights. May God Bless you all. Merry Christmas and Happy New Year!

Mandy W.

I had a car accident, the break peddle had come in several inches. I cried right away, I knew something was so wrong. I had never had anything hurt so bad. I remember going to the ER and by then laughing because I had already cried for 5 hrs. I was shocked when they said nothing was wrong and it was just a sprain. I didn't give up, I went to more DRs, at 5 weeks I was doing PT and on Sunday night we watched some 48hrs or Dateline that had a show about RSD and a lady with a sprain who going to have a coma. I looked at my husband and said "I hope that doesn't happen to me" the next morning I had PT. PT told me that they had thought this but was unsure. I was told I needed a second opinion but they thought I had RSD. OMG, it happened to me! I went into the Podiatrist who ended up giving me the notice that I had to get off my foot for 12 weeks and yes she thought I had it too. OMG. For 4 months I did everything to reverse the RSD, I even did Ketamine. I took everything they tryed, I was allergic to many of them right away the 1st pill. OMG, my body is changing. I did have a remission, but it quickly came back. It spread to my whole body. I was a RSDer for sure. I had to relearn my life. Everything I knew was gone. I would survive at any cost. Today I strive for days with my family to be happy, we just had to alter our ways. We work together as a whole.

Tracy J.

Hi my name is Tracy Jones I have had RSD for 10years after going to the ER for kidney stones I has told the nurse that the IV was hurting but was told it is justt he pain medicine but wrong the IV had reacted with the sympathetic nerve and this is how I got my RSD and no I could not go back on the hospital  because the IV was inserted correctly since then it took about 8 months and 6 doctors to be diagnosed which is pretty good i had a gangolin nerve block three of them and it helped for the first year until i was working as a dental assistant my right thumb was smashed which was the same hand as my initial inj ury since this injury nothing has helped i now also have a trempr in my hand that never stops then had a SCS implanted which helped some until my RSD started spreading down my right side and affecting my organs then my SCS started shoking me so i have had it removed at the five year mark my organs really started to be affected first my galbladder not from stones but from swelling then my ovaries i was told i had ovarian cancer but after surgery they found my ovaries just had this much swelling that they thought it was tumors then we found a nodule on my thyroid not cancer so we left it alone a tear later it was the size of a egg and had to remove the left side of my thyroid ,then my left side of my face started to atrophy to a condition called Parry-Romgerg Syndrome which is considered a orphan disease because it is so rare we did find that the sympathetic nerve has something to do with this disease as wellso now the left side of my face is caved in and droops down the next organ is my appendix which was just removed this past May but not easily when they went to do the surgery they found that my intestines were so swollen that they could not even see my appendix so i had to be cut open and in the hospital for 5 days now even though being on every kind of thyroid medicine combination my right side is now swelling i am having all the symptoms of hypothyroidism on top of the RSD pain which is not good i cannot put my feet on the ground because of the pain there is some documentation that people who have severe hypothyroidism are misdiagnosed as having fibromyalga which i have that as well i am seeing a surgeon this week to see about having this side removed and then i will also be seeing about having a port put in since i have had the RSD getting a vein is a ordeal alone I do not want any testing done because it has taken up to five to six times i have had to have them in my foot so we are going to try a port I also have been diagnosed with ankylosing spondilitis which is autoimmune as well I hope i can help someone who may be going through the same things and you are not sure why i have a lot of info on getting RSD from a IV some doctors did a study and found this is a one in a million chance to get it this way but is the worse because it affects the blood vessels more and all our organs have blood vessels i have done alot of researching and just hope i can help another but I know that if I did not have Jesus and all the prayers for me I would not be able to do this I also have a great family support my husband is amazing he works 7 days a week and then takes care of me and our boys as well as the cooking and housekeeping not all men would have stayed in our marriage i have not slept in a bed in 6 years i cannot lay down so he is truly been a gift from God we have been married 23 years and I can never tell him enough how much i love him well just want to thank you for letting me share my story hope i help someone

Tyrone D.C.

On Feb,20,2009 walking on a sidewalk I fell and fractured dislocated, had 8 operations and in between I got blood clots in the calf and still in the Pain Clinic at my second Hospital receiving Nerve Blocks in the groin area and buttock, in which it has not helped that much and may have another operation to try to get back my range of motion !!! And now in the process of getting seperated because I am not myself whatever that is suppose to mean. So now we have the house up for sale and it is time to start fresh nd start taking care of myself, thank-you for letting me voice my story and all I can say is that I have DVT, and RSD out of this nightmare of a Life that I have !!! Less Pain and more Love... :)<3

Jasmine M.

In may 2010 I was at softball practice just like any other day. I was playing second base so I got ready to catch the ball well my glove fell of and the ball was in my hand that second my hand turned blue and green and I couldn't move my hand. I went to the Emergency room they just put my hand in a sling and off I went. I went to about 5-6 doctors in Hannibal alone no one knew what was wrong. I was send to Columbia Orthopedic Group and they send me to Columbia Interventional Pain Center. That afternoon I had a Stellate Ganglion Block. This blocked worked for 5 days. I was put on Naproxin 500mg 2 times daily. With therapy and this medication the pain went down a little. A month after this I was walking up a hill and fell, hit my hand, right then and there I knew it had spread. Before I fell my RSD was only in my thumb area, when I fell it went all the way up to my shoulder. I went back up to Columbia that next week and got another nerve block this one did not work at all. I was put on Neurotin 100mg 6pills 3 times daily for hypersensitivity. My pain went down but I will always have RSD and I will never be a normal high school girl. I cannot play in sports or P.E. I have to be careful so that my RSD doesn't spread. I am 15 years old and I live with RSD.

Michelle

I woke one morning 5 years ago in pain and unable to move, over the course of the day the movement came back everywhere but my left arm but I had the worst pain i have ever felt(5 natural births was less painful) months and months of different medications, different doctors/consultants as you all know, the diagnosis of CRPS was made the trigger was a suspected TIA. I have full body now and struggle daily with the pain. No one but a sufferer can truly understand the pain that is felt and how unrelenting it is. Since diagnosis I have been diagnosed with VT, DDD and arthritis.I've tried all treatments including scs but nothing has helped so I now cope drug free, it's hard and at times I want to give up but my family, my lovely husband and children keep me going. My body feels like it is giving up but on the outside I look fine. This condition is cruel but with determination and a thick skin you HAVE to learn to put up with it. Michelle

Stormy S. & Tyler G.

Tylers story is along one.He fractured his right arm twice in 2 months with little to minimal fall.While his arm was still in a cast he got his feet yanked out from under him on merry-go-round at school which caused yet another fracture.Tyler was given a walking cast about a week before the cast was due to come off he started complaining with a burning on the right foot where the cast was.The day the cast was removed his foot was purple,swollen,and,we could not touch it.We tried everything thinking it was just tender from being in the cast.After he fell on his foot we took him back to bone Dr where they pulled and twisted on his foot when him screamed the Drs told him to quit overreacting and to let them do their job.I quickly asked for his records after over 10 visits to these Drs and no answers I as a mom had enough.In October 2010 I took Tyler to his peds Dr an with in 30 mins he diagnosed him with RSD in his right foot.We spent a week in a children s hospital in Memphis where they gave Tyler who at this time was 10,1200mg of nerurotin a neurological pain killer that not only did not help the pain but,it put Tyler into memory loss,fits of rage,and,caused him to have 100 or more functional convolutions a day and thats just a few of the side effects.They also put him through PT so painful he would be sicker than he was before.After 3 returns to same hospital because RSD completely through his body in 9 days we were told not to bring him back and they also wanted me to put my son away in a mental hospital because they said it was all in his head and his pain was not real.After we returned home DHS came to my house because some Drs in Memphis called and told DHS that I was not mentally fit to raise my child.DHS talked to me and my son and filed a report stating I was more mentally capable to tend to my son than anyone else.Tyler had to spend 7 days in a hospital in Jackson where they basically told us the same thing and also wanted to commit my child to a mental hospital and again I refused.We began finding other people with RSD and found a Dr in Corpus Christi,Tx that had a treatment for RSD and other debilitating illnesses.The cost was great and I had been fired because I chose to stay with my sick child so we had no insurance.After much thought and prayer we decided to raise the $8000.00 we needed to travel to Texas to get my son the treatment I knew in my heart would help.Tyler suffered for 9 months with pain so bad its undiscerning,a bath even hurt him and a simple thing like a kiss from me hurt.Tyler could no longer walk,play,or even go to the bathroom by himself.As if the physical pain was not bad enough he had to endure the mental abuse of people that said he was a faker, itty baby,and,told him he was crazy that he didn't hurt as bad as he said.These people weren't strangers they were family,teachers,people that should have lifted him up put him in a depression my sweet little boy at times said "I just want to die so I won't hurt anymore and you won't have to cry for me anymore" I told him to hold strong and trust God and me and he would be better.After 9 long months we finally raised enough money to go to Texas.We started getting his treatment June 20,2011 and by June 23,2011 Tyler was putting on shoes and beginning to walk his pain level dropped and the age regression he suffered went away.We spent 20 days in Texas when we returned home Tyler continued to do well.He returned to school and began to be a normal child again.In the past few weeks he has had a relapse but, that is going to happen.Even though RSD is about the most awful illness in the world my son is my hero he smiled through a lot of bad times and he made me a better person.

Sami

Story Hey. I'm Sami and at the moment am 20 years old. I was diagnosed with RSD over six years ago, following a fracture from the year before where I gracefully fell over pretending to be a ballerina, and was subsequently bullied and had that injury re-hurt. I was quite lucky as I woke up one morning complaining of pain, got taken straight to the hospital (as I have always had a habit of both injuring myself seriously and not expressing pain, so if I said I was in pain - I WAS IN PAIN!) and they did tests and came back that day saying I had RSD and sent me to a physio. It was a funny day actually, one nurse was trying to offer me morphine and I was happy to take regular strength paracetamol (knowing it wasn't helping at all but I didn't want to be a bother). Until a year ago physiotherapy controlled the pain and localised it to the original injury, which was my right arm. Then we started freaking out because my left arm looked and felt similar but we couldn't figure out why. So my physio just started trying to treat that arm as well and kept trying to keep it under control, but when a injury not long after saw it starting in both my knees he said I had to go to the doctor and start down that path. Now I am affected in both arms (fingers to shoulders), both legs (toes to hips) and am starting to get pain in my back and neck but haven't had that confirmed as RSD related. I've tried so many different pain medications, and am hoping that in October I will be told by my specialist that they will help and provide a new treatment such as an SCS. As much as I try to not let it RSD does control my life. Originally I only had to give up playing cello and basketball, now I'm barely able to write, type, walk and give/receive hugs. It's frustrating and upsetting as hell! And one of the most infuriating things is that no one can see it. Doctors don't know much about RSD in general. I've had some complete and utter idiots (such as one doctor who hit my arm to see if it 'really hurt'. Yep, it hurt!) but I did have one fantastic surgeon who did his research and gave me a nerve block when I had surgery on my other arm to prevent it spreading. That one little thing saved it spreading for six years. Yeah, I get frustrated and upset a lot, but who wouldn't when they're wanting to start their independant life and realising they can't do simple things like drive themselves to the doctors appts no one else has to worry about because their feet don't work? We're allowed to be upset over things like this! It's justified! It just can't consume everything. You need to stand up for yourself, bring friends and family who will yell for you when you're too tired to, and do your research because some of them haven't had to.

Julia W.

I have had RSD since Nov.2003 after having Ulner Nerve Transposition on right arm.It has spread to my right shoulder and my rib area.I had CT scan with contrast dye 2 weeks ago and now have pain in my right leg and thigh.How do I describe it.Imagine someone pulling the skin off,throwing gas on it,then setting you on fire.A gentle breeze causes pain.A hug can hurt.Your whole life changes.And not many believe you cause you have an illiness that is not visible.You wear long sleeves when it is 100 degrees out to keep the air off your arm.Your life is planned around pain and meds for the pain.

Cyndy

Mine started in 2003, I was at work and it was winter. I was bringing in carts and snap, my ankle went. I walked on it for days and then thought I had better go to the Dr. I went and found out I had broken it. I was in a walking cast for 6 weeks but never got to stay home from work cause my employer didn't have insurance. After my cat came off it never stopped hurting,I had a nightmare time and went through a Tom of stuff. Finally was diagnosed in 2004 and have dealt with it sense. It is note in my shoulder and spreading down my spine. I work everyday and take care of my family and try to smile through all of it. I never could get a lawsuit or anything against the employer cause no one will touch it. I also hurt myself there and lost my workers comp case cause he threatened the others that if they didn't lie they would lose their jobs. The Guy is a piece of work but I survive day to day no matter what..

Ronnie

I AM TRYING TO CONTACT ANYONE WHO GOT RSD FROM A VENIPUNCTURE!!! I know everybody says that their story is different and they are all tragic in each and every unfortunate way. But I am asking for help!! Not just for pain management but to contact anyone who has gotten RSD/CRPS from a venipuncture. I was having a routine physical that involved blood work. The nurse who withdrew my blood was having a REALLY BAD DAY! She was unpleasant, nasty, heavy handed, and talking under her breath because she was angry at a fellow co-worker. She just wanted to get it done in a hurry and go back to lunch. I should have left then, but being in the health care field myself, I though she would have been professional about it, I was wrong. My arm was still bent when she stabbed me with the needle and it wasn't even in line with the vein; it was not even inline with my arm. I told her it hurt and that she was doing in wrong so she rotated to line up the needle without taking it out of my arm. My hand started to go numb, I felt electrical and burning. Before the end, my hand was completely numb. I informed her but she did nothing. After filling the first tube she dropped the vacutainer full of blood and it swung to the inside of my arm and ripped the needle upward out of my vein. (Some may ask why she did this. She did this because she did not have what was needed to finish the blood draw and it was out of reach. So she let go to retrieve a second vile.) I asked her to do something and she grabbed it and swung it back up, again not taking the needle out of my arm. I had a large hematoma forming and she squeezed so hard I actually yelled. I went home and immediately placed ice on the hematoma. Anyone with RSD knows not to use ice. I was in horrid pain. I was suffering terribly. This happened in 2009 and I have since had 6 blocks and many different meds to try and find the right one. Some made me so sick I felt nauseous,queasy, you name it. Again, RSD sufferers know that meds never take the pain away, they just take off the edge so you can focus more on what is killing you from the inside out. The person who did this was eventually terminated but not before she had done this to someone else. I had this done at a Health Center where I live in Santa Clarita, CA. If anyone out there knows of anyone, or if it is YOU that is suffering from the same hands of this woman I am asking for you to contact me, PLEASE!! I truly feel for all that suffer from this wicked disease and I wish good health and better days for all of us.

Tammy

In 1993 I mopped my kitchen floor. The phone rang, I ran to answer it and slipped across the freshly mopped floor. My ankle snapped as I tried to catch myself from falling. Went to a quick care facility which the doctor said nothing was broken. He wrapped it in an ace bandage gave me crutches and sent me on my way. That following week I returned to work, which I worked for a hand surgeon and occupational hand therapy clinci. I worked on the therapy side as their receptionist. The head therapist said I should see her friend a orthopedic doctor to make sure it wasn't broken. Sure enough he said there is a hairline fracture and the achillies tendon was damaged. He put me in a cast for 2 months. A couple weeks out of cast I just had to go play baseball, as I have played since I was 7. The first time I ever slid into first base(was not supposed to do that), and again I snapped that ankle and reinjured the tendon. This time they gave me a walking cast for 3 months. Again a few weeks after being out of that cast I was playing on the play ground with my children and slid down the pole and landed right on that same ankle and yes reinjured it all over again for the 3rd time within a 1 year period. I never healed right after that one and was never able to play my beloved baseball ever again. The urges I still have to want to play this game I've played my whole life. Within another year I started working for a pain management doctor. I had just seen another orthopedic doctor who wanted to attempt exploritory surgery because he had no idea what was up unless there was a bone fragment or something going on that wasn't showing up on any xrays/MRI's/CT's/Bone Scan/Body Scans and Ultrasounds. Thank God I went to work for the Pain Management doctor who said why don't you let me do a sympathetic block and make sure you don't have RSD. I thought OMG I have seen patients come through therapy many times and I sure hope not. The block did prove my RSDS although I was lucky it did, it doesn't show for everyone. Thank God I didn't go through that surgery as we all know surgery is very bad for RSD'ers. I have since been through the ringer on test/injections/therapy/

Kristina

I was diagnosed with CRPS three years ago. I didn't want to hear that diagnosis so continued down the path of numerous tests and examinations - all of which delayed the treatment plan I needed. I have now been off work for seven months, have been diagnosed with depression and my world feels like it has shrunk to the size of a dot. I am finally learning how to do more but in micro-steps. Mentally, I am still trying to find peace in this new landscape, but it is there. I am meeting the most incredible people along the way :)

Lara

My name is Lara and I was FINALLY diagnosed in May 2011. I injured my shoulder at work in Nov 2010 and was told that the pain would go away soon. It didn't and I kept telling the doctors that. No one wanted to listed to me until one doc said, "Hey! I think you may have RSD.". He sent me to a pain specialist and we determined that, yes, I do have RSD! I know you know how it felt to finally have a name for the pain and to have someone believe you. I'm still reeling from the diagnosis and learning more and more about the disorder every day. My first nerve block is in 3 days and I am scared to death, but I am told that it will help. I have decided that this will not stop me! I was on the road to management at work and when I return, they better look out, cause here I come again! I know that I won't be able to do all of the things I did before, but I can still lead a team. Reading all of the stories on here has helped with the fear and I want to thank you all for sharing. It helps us "newbies" to know you're out there to help with the questions and fears:)

Angie P.
I've had RSD for 13 years. It's in my entire left leg and foot, lower right leg and foot and some docs suspect it's also in my colon and lower back. I was diagnosed following a horrific car accident. Then it was only in my lower left leg and foot. It's spread. I've been treated at the Cleveland Clinic by Dr. Michael Stanton-Hicks and at the Steadman-Hawkins clinic in Vail, CO as well as by numerous other physicians, specialists and surgeons. I've been on so many medications I can't even count them. I've had a spinal cord stimulator implanted and then 10 years later, removed. I've tried desensitization therapy (it actually worked for a while!) and lower lumbar spinal blocks. The psychologists and psychiatrists were a joke. Currently, I'm on Pristiq, Neurontin and, after a lengthy battle with my doc, Vicodin. I've asked for medical marijuana but I get more resistance there than with asking for narcotics.

They (docs) say that narcotics don't work on RSD pain. I asked them, "how do you know? Have you ever had RSD?" I realize there is no cure and narcotics can't take away all the pain however, they do take the edge off and allow me to be somewhat functional and have a normal day at least, as normal as I can have with RSD. I've noticed that the pain changes with the barometric pressure. When I lived in Vail, CO, following desensitization therapy, my RSD went into remission. I was able to play softball again and because I'm a catcher, that was a really big deal to me. I suspected it was a combination of the therapy and zero humidity. I was in bliss! When I moved to Michigan, gradually, the pain returned. I've been on crutches and in wheelchairs when the pain is at its worst. Humidity is high here, winters are very long and cold. I've gotten used to the pain, it's with me every day but for the most part I can function and live through it. Mind over matter. But there are days, months at a time, when it's excruciating and I'm back on Neurontin and pain meds. I try very hard to live with RSD without meds. I find that I feel better when I'm not fuzzy, high, tired. I can handle the pain much better. But I weaken when it's bad.  Like everyone with RSD I have good days and really bad days. But I refuse to be a victim to the pain. I do my best to ward off depression but I do have some down days. I'm young, 47, I have three grown children I raised alone and I'm now a grandmother. I want to function at a higher level than the pain will allow but I don't give in on most days. The best advice one doctor gave me early in my battle was this: "Try and function as normally as you can. Short of breaking it you can't hurt it (leg) any more than it already is. Use it, don't coddle it. You'll maintain functionality much better than if you baby it. Try not to limp, you'll only hurt your other leg and your back over time. Own your leg, don't let the pain own you." He was a very sympathetic man and his words stick with me every day.

I hope this helps at least one person. I have hope, not for a cure, because that's a long time coming, but for a way to manage the symptoms without being a zombie. What works best for me though is taking that doc's advice. Do your research, be your own advocate, don't give up hope of a new normal. Please don't hesitate to ask me questions if you like. I'm here for anyone who needs a shoulder.


Renee'
My Name is Renee' Henne and I suffer from RSD in my left leg/foot &right foot. My story is not much different then others with RSD! We all suffer each and every day in our own way and sadly to say, far to often in silence because people just don't understand. I don't consider myself an "angel" of RSD to others, just a support for those who need it from someone who knows!

My husband Steve, my 2 children ages 13 & 14, THEY ARE ANGELS!!! After everything my disease has put US thru as a family and they still hold me up and show me more strength, love & compassion, not to mention faith! After all I/we have suffered, they have NEVER complained ONCE about needing to help mom around the house or getting things for me so I don't have to walk. The field trips they wanted me on, that I couldn't go on! They only say as I cry for feeling like less of a mom, "It's ok, we understand, we love you & want you well"! My husband works literally 7 days a week and still comes Home to help with housework, cook and comfort me!

My RSD Angels were sent by God long before I suffered from this disease and I am grateful for them each and every day!


Michelle C.
I am a strong woman. I am a stubborn woman, but I am a strong woman. I was an active kid, and as a gymnast I survived several injuries. One being a very badly broken arm and a year long rehabilitation process. Soon after my arm incident I developed rare blood disorder (ITP) which was another difficult fight. All this before the age of 13. I some how managed to go through all that with my hope, passion and health still intact. This is where the strength of family and friends come to light.

I am now facing one of the most challenging times in my life, and they are the glowing lights that keep my world from falling dark. I am now an RSD sufferer. I am a stubborn, strong woman faced with RSD. It has been a year and a half since injuring my right foot. It has been a year since the Doctors that were trying to heal the pain in my foot created the situation that keeps my feet on fire, and life at a standstill. I had planned to attempt a 5K run as a means to bring a new challenge to my world. I have always been athletic and exercised daily but this was my first commitment to a 5k. I supplied myself with a new pair of the best running shoes, and was recommended orthotics to give me the best support. Then it was off to the gym to run 3 miles each day and work up to a full run for as long as my new shoes would let me. Sadly, the orthotics were not placed in the right position in the arch of my feet. After a couple weeks of running with visions of a finish line, I found a finish line far closer than I had wanted. The poorly recommended orthotics had given me the condition known as "turf toe". The downward spiral starts there. After many Dr. visits, and a mixture of unrealistic healing time frames, I was subjected to air casts, hard casts, and a final Human Growth Hormone injection that has forever changed my existence.

Through all this I never missed one day of work. The 10 min appointment for the Human Growth Hormone injection was done after work on a Friday, this was my last day of work. From Friday to Monday I had a pain set in unlike anything I had ever experienced. After several more appointments of me begging for relief and answers I was sent to pain management. It was there I was given the answer " You have Reflex Sympathetic Dystrophy". All I was thinking was OK ... fix it! I, like many, had never heard of RSD and had no idea what that meant for me and not only my future, but my families future as well.

It is the love and support of my family and friends that make the difference. I work everyday to do what I can to show my loved ones that I have not given up, in hopes that they will never give up on me. I was once someone who chose to set my alarm clock at five fifteen in the morning so I could get up and get my work out in before getting ready for work throwing on my heels and running out the door! Now I lie in bed every morning giving myself a pep talk to just to stand up because of the pain. I miss feeling the floor under my feet, I miss my shoes (mostly my flip flops), I miss walking with purpose and most of all I miss my feet preRSD!! The one thing that I am most thankful for are the many memories my feet have given me. My favorite one of all is the walk through the sand toward the love of my life, Jason, on our wedding day. My story is far from over but I know the ending will be whatever I make it, and with the help of my husband, family and friends the only ending possible is a happy one! I will continue to hope and pray for a cure and in the meantime take it one day at a time! Thank you for taking the time to read my story.

Cynthia F.

Mine began in October of 2003, I was at work at a grocery store and was in the parking lot bringing carts in. I slid on ice heard a loud pop in my right ankle and just keep going. I finished my shift and was off the next two days to I figured I had just sprained or strained it somehow so I ignored it and didn't go to the Dr like I know now I should have. The first day back to work it hurt really bad and I decided enough was enough and went to the Dr after my shift, I had broken it.

This is where my life turns into a nightmare.... I was put in a walking cast and sent home but I didn't get a Dr note to stay home from work so I just kept going. About 2 weeks after this I find out that the employer at the time didn't have Workers Comp insurance so that was the beginning. He paid for the initial Dr visit and the last checkup but I noticed that there was something wrong and it still was killing me but now I had burning stabbing pain, something that I didn't have before. I went back to the Dr and he told me basically it was in my head and that I just wanted pain meds. I suffered for about 3 yrs until I couldn't take it anymore and found a new Dr.

In the meantime the employer I was working for basically didn't care so i quit that job and because of the area I couldn't find anyone to go after him for the lack of insurance. Anyway this new Dr I found just happened to know what it was. His wife had had an issue with her leg and he new of a specialist that told her, hers was RSD. Luckily for her, hers went into remission. He sent me to the specialist and he took one look at it and said yep that is exactly what it is. I had done tons of tests before that and no one could figure it out. I finally had an answer but as you all know we are stuck this way and don't have a lot of options for relief. I focus daily to function and to not stop my life. I am a mother and a wife and even though I had to quit working in the grocery industry, I now have a great job where I get to sit and work... This is the worst thing that anyone should ever have to deal with and It is so nice to know that there are others that we can talk to about it.

Anita H.

April 21st, 2004 changed my life forever.  Little did I know that what seemed like a minor little bump could cause so much pain for such a very long period of time.

My Profession at the time, I was the Assistant Director of a Child Care Center with the enrollment capacity of 98 children aging from 6wks-12 yrs.  I was asked by my boss to fill in for the Toddler Teacher that was out for the afternoon.  I had an Assistant Teacher with me who was changing diapers & supervising potty time of the 13 kiddos in the room at the time. I was supervising and playing with them as they finished potty/diapering.  While sitting on the floor, where child care providers spend a great amount of time, I had three toddlers chatting with me.  I was sitting on the floor with my knees extended up.  I had one toddler standing on the outside of my right leg, and one standing in between my legs.  They began to fight over who was going to sit on my lap.  The outside little one pushed the inside toddler right into my left knee sending a lightning like pain down to my toes.  I immediately knew that something was not right but did not know that it was going to be the beginning of the longest battle of my life.  I will just say that Workmans Comp. is not at the top of my friends list.  I have had 2 IME's for WC tell me that there is nothing wrong.  Even after being diagnosed at Mayo in Rochester, MN.

Since the life changing experience, I was fortunate enough to have my CRPS go into remission while I was pregnant.  Other then that 9 months, I have lived with pain day in and day out.  I have fought with WC and will continue to fight them until they accept my injury.  I have had a life altering accident and am only trying to educate and let people know what exactly CRPS is.  What really makes me angry is when you go to a dr. appointment and the nurse asks you what exactly CRPS is.  They should know.

Tammy N.

I am a mom, a wife, a friend & family to some. Family and Friends are important. Being married and being a mom has been such a blessing. I appreciate all I have and having family and friends I have it all. It is the little things that matter that we should appreciate. I am permanently disabled with Reflex Sympathetic Disorder known also as Complex Regional Pain Syndrome in 2004 after having double knee surgery. Having throughout the years chronic multiple medical problems involving knees and back. Therapy, medications and being told of surgical procedures needed I continued trying to keep getting through days waiting as long as I could before doing it.

Reflex Sympathetic Disorder is a progressive disabling disease. High levels of pain (one of highest on Mcgill pain index), burning (imagine putting lighter fluid into veins of affected limb, now start it on fire), and many other symptoms which there is NO CURE and NO ACTUAL TREATMENTS except to treat what can be treated, but even then sometimes there is nothing. Disease affects the muscles causing tightening, spasms, and atrophy. Affect the skin change in temperature, color changes, rashes, dryness affecting hair and nails. Having no known reason for why it begins except that seems to start from injury or surgery. It affects one limb, in time goes on to affecting even more. Significant amounts of swelling, stiffness and sweating happens, including circulation problems needing elevation or special stockings. Sensitivity to sound, being touched causes pain. Weather and stress causes pain levels to raise and increases spasms and body jerks. Yes it is hard to imagine a yell, breeze, hug and piece clothing hot and cold and stress can do such a thing as raise levels while medicated needing to take breakthrough medications but it does. There is no reasons as to why, it just is which is hard to explain and have others understand and honestly listen. Everything being irreversible ending in limited mobility to total loss of mobility.

Having this disease as well as other medical problems only complicates things more unable to fix or correct problems makes me having to go through many surgeries and will continue to go through them. So for now all I can do is get through the days the best way I can. I take several medications, have a spinal cord stimulator (a device used to exert pulsed electrical signals to spinal cord to help in controlling pain), have a intrethecal pain pump (which is method of giving medication directly to spinal cord) and am seen by doctors regularly for medication, for treatments and surgical procedures that I will continue to need. It is true, laughter is best treatment. Mostly home bound need to get out sometimes even if just little while. Visitors are needed for some company. It is not easy, but it is what it is. Problem is people like me need help, there is so much we just can't do, and hard having to ask all the time. Life is not easy being disabled. Having all the problems with knees and my back, with this disease and all that comes with it. I wish I could write down the correct words in explaining the everyday fight we all fight. Life is going on all around us and we can only sit and watch. Every time we join in we pay for it. Don't know how we get through. Can't stress enough how important it is to have someone in your corner cheering you on. We lose so much. Sorry that we miss out on things, last minute change our minds, that we aren't what we once were. The help that we all need because we simply cant do them or because doing them we only continue to get worse. We don't want to let others down, or be a burden to them asking for to much.

Rhonda M.

My story starts in June 2000. I was working as a warehouse clerk and loaded trucks, pods, and was a podrunner. On June 17th 2000 I was loading pods and was trying to stack a pallet. When I was crossing the aisle a front loader was coming towards me so I stopped to let them through. This caused my 70 pound pallet to wobble and couldn't regain control of it. So, I let it go and jumped back and it came crashing down on the top of my right foot. It crushed my foot but, I kept working to help my coworkers get done before lunch. A podrunner got angry with me for loading his pod too slow and ended up dropping a heavy box right on to my already crushed foot. Needless to say I went out of my head in pain. They rushed me to the hospital and the doctor told me I had a complete crush injury with no broken bones. Well, the company clinic doctor kept sending me back to work and each time I got re-injured. So, my union rep told me of a doctor he was seeing and knew he would keep me off work until I was actually able to return. 

I started seeing an orthopedic doctor and he was very compassionate but afraid to give me the stronger pain meds I needed. For 2 years I stayed with him as my doctor and he told me that I had RSD about a year after I started seeing him. He finally told me that I needed a pain specialist and referred me to the current pain clinic that I go to. They were also very compassionate and started me on the proper meds and did pain blocks about twice a year. When I wasn't getting long enough relief from the blocks they asked me if I wanted a Spinal Cord Stimulator. I said yes and in August 2009 I got a SCS implanted. It gave me a great deal of relief for about the first year or so but now hardly makes any difference in my pain levels now. My RSD is full body now and so deal with severe weakness, pain, and burning throughout my whole body. I have to use crutches or a walker to get around because I either lose my balance or my legs simply give out on me. 

Before I got injured and got RSD I was a very active person. I walked every where and worked out at the gym every day. I kept my house so clean that it was picture perfect every day. I worked 50 to 60 hours a week at my job. I loved to go fishing, camping, swimming, and actually had a very full life! Then I got RSD... Now I can barely keep my house clean, it takes all I have to get any shopping done, my sex life is in the toilet, I can't sleep most nights, have to miss family gatherings when I can barely get out of bed. I've had to miss a lot of things because my RSD just wouldn't let me do what I wanted to do. 

But, I get myself up every day and do what I can every day. I refuse to let RSD take any more of my life than it already has. I workout 4 times a week, walk to the store when I can, walk up and down my basement steps doing laundry, wash my dishes twice a day, and cook when I can. I am 44 yrs old and have 3 children that are all now grown. My youngest, my 18 yr old daughter is a junior this year. My 21 yr old joined the Army and is now stationed in Fairbanks Alaska. My 28 yr old is working in a factory and has been a great help to me when he can. My husband and I are celebrating 20 years of marriage this year and met 21 yrs ago on St Patrick's Day. He has been such a trooper through most of this. We nearly divorced several years ago because of my RSD and his lack of understanding of what I was going through. But, we worked things out and he understands as best he can. You see I have to sleep in our living room because I can't sleep most nights and watch TV most of the night. I can't sleep with him and not keep him up along with me so stay out in the living room. Not to mention the muscle cramps that make me jump out of bed and the muscle spasms that cause me to kick and punch against my will. I wouldn't put my husband through the nightmare I live through every single night. 

Well, that's my story as best as I can tell it. I live every day as best I can and refuse to wallow in self pity or give in to this monster called RSD. I have learned my limits but also try to do more than I think I can. Every single day is a challenge but, with the love and support of my friends and family, I know I can get through whatever I need and want to do. I hope one day to be able to say that I used to have this thing called RSD but, until that day I will stand up to RSD and live my life as best I can. I hope this finds all of my RSD family in good spirits and low pain levels.

Kim C.

About two years ago, I woke up with a severe burning sensation on both of my arms... It felt like a terrible sunburn..It just wasnn't going away. After seein several doctors, it seemed to spread to my legs, back, face, jaw and hands and feet. No one could tell me what was causing this. I finally saw a great neurologist in Philadelphia and he immediately diagnosed me with RSD. I had no idea what the disorder even was. By that point I had severe swellin in my legs and mottling of the skin as well as horrific pain as if someone poured gasoline onto me. I've had several kinds of therapy even had ketamine treatments.... I'm hanging in there, pain has somewhat decreased, but the doctor still doesnn't know what caused the disorder. I am supposed to have a ultrapleural bupivicaine block in the next couple of weeks...Any one done this procedure and had any luck? I wish you all the best and my prayers are for all of us to find a cure...There has to be hope for them finding something to help!!!

Tamsyn

I was diagnosed with CRPS when i was 12. Now I am 15, its still there but getting a bit better. I'm 16 soon, and these are meant to be the best years of my life! I go out with my friends, but have to be careful because of all my meds, and the CRPS has lead to depression, which just means more meds, and more appointments with nosy people I hate!! As of July, I won't be with the pediatric center anymore, so if I have a really bad relapse, I will have to get to know another doctor! I WANT A CURE!! The only thing 15 year olds are meant to worry about guys and homework, but have all that plus pain and depression, I'm falling behind at school because some days i can't sit at the table and work, and none of my teachers this year know theres anything but the ordinary going on, and I don't want them to, but sometimes I just feel like giving up. Well, that's my story.

Abigail C.

My name is Abigail and I am 12 years old. On October 1st 2010 I was diagnosed with CRPS. During the middle of September I had kicked a football during P.E class and broke a bone in my foot and sprained my ankle. I went to the doctor and they put my leg in a cast. That obviously didn't help at all the pain was so bad that I would be screaming or crying in my sleep. I still went to school for 1/2 a month after the injuries. I would be in excruciating pain and I usually would only make it to 4th period. The longest I had stayed in school was my last day for 3 months - I made it to 7th period. I finally went to the neurologist who diagnosed me with CRPS. Right after I was diagnosed the pain went to the left side of my body. The pain started at my toes and went up to the top of my ribs on both sides of my body! I became ULTRA sensitive to touch that I could not have a blanket cover me. The pain was like knives stabbing me,electrical shocks,burning,and ripping pain. My leg(s) also started to turn purple. My pain became so bad during October that I was in the hospital for a week on a morphine pump. Then I got released then had to go back to the hospital a week after. They finally gave me strong enough pain meds so I could go home. I used a tens unit to restrain the pain. I started Physical Therapy and relearned how to walk after a month and a half. Finally December my pain was pretty much gone, and in Jan. I was able to participate in P.E again. Sadly the pain is back, but in my wrists after getting a small fracture skiing. It's painful to touch things and painful to type this. Even after all those months in pain and now, people even my family members don't believe I have CRPS and think that most of the time I'm faking. Very few people believe me :( After finding your FB page I think "CRPS doesn't own me"

Maria Anne

I had a cervical mitre on my neck in 2008. After the surgery I had pain but I thought this was normal. I was in severe pain on a daily basis and I had physical therapy. I went back to work and it was really too soon. For the next two years I dealt with the pain and it was mostly manageable. In 2010, I got very concerned because I was having some of the same symptoms before I had my surgery. The primary care physician sent me back to the neurosurgeon. He looked at my MRI and said that nothing was wrong. He looked a little worried and he sent me to a neurologist. All my nerves were working fine, except the nerves coming out of my neck. They were firing as if I was in a hard work out. They do this constantly. I was at my desk at work a few days later when out of the blue I was hysterical in pain. I worked at a school and was laying upside down in a chair when my husband came. In April 2010 a second opinion by a top neurosurgeon was this awful disease. My Pain Management Dr. wanted to double make sure so he sent me to a Thoracic Surgeon and a Rheumatologist. When he finally resigned himself he looked at me and said that this is an awful disease.

My whole life is changed. I can no longer work. It has spread to my feet ankles legs. It started in both arms and neck. I can not receive disability due to the fact I work for a school district even though an independent dr. for Social Security said that I was 100% disabled. I thank my family, Jesse, Karina and Landon for their support and my dog Suki my constant companion. Friends and family have not handled this well. The above named people and dog are my only daily contact. I hardly leave my house and am waiting for really warm weather. My family does all the housework and most of the cooking. I should be getting a Spinal Cord Stimulator soon. Insurance denied Ketamine infusion and Nmenda. My pain specialist wanted the Nmenda to stop the brain from imprinting this on healthy neurons. This has spread in just one year. I am grateful for little guests that make my day easier, like someone handing me a pillow. I do not even bathe unless my family is at home so that I do not fall. I am grateful to be alive but I feel like a failure as a human. What do I offer? The above named people make my days bright and my dog just loves me. That has to be enough for now.

Laura D-M.

My diagnosis came finally in August 2009, officially I guess. Many names before that it was called. Anything from Bursitis in my left shoulder and that it would go away in about 6 weeks and my right knee. Well that was a torn meniscus and needs to be repaired. So my first surgery was in 2007. After this surgery, I went back to teaching Aerobics, Yoga, Spinning, Personal Trainer, and so on. Again, pain continued and I pursued my health and fitness career. In June (I think) of 2009 while jogging, I felt horrible pain in my right knee and this time, not only did I re-injure my meniscus but I also fractured my Tibia. Unfortunately they could not repair my meniscus because of the break. I wore a brace and left the tear alone. The surgeon tried injections and medications to help ease the pain, but now the pain was getting out of control and the colors were starting.

Finally after seeing so many doctors, I was seen by a RSD Surgeon and he gave me the diagnosis of RSD and he could not repair my torn meniscus because it would make my situation only worse. I now need to find a Pain Specialist. I had no clue what RSD meant and this wonderful doctor tried as best he could to break this down for me and my husband and than said we should go home and Google it. We did, and we were more worried than ever before. How do we find a Pain Specialist. This had to be the hardest thing in the world, because as we were visiting doctors, NO ONE wanted to treat my pain!!! I couldn't even tell you how many days and nights I cried and how many times my husband was screaming on the phone or at doctors personally or even at ER doctors, begging and pleading for help. He just couldn't stand watching me in such agony anymore. He felt HELPLESS. No one wanted to take my case on. Most doctors here in Rhode Island didn't have a clue what Reflex Sympathetic Dystrophy was or how to even treat it.  We felt more alone than anyone has ever felt. My own family doctor could only prescribe a limited amount of pain pills and only for a very short time. We were running out of time! We finally came across-ed a Pain Clinic in MA, where I got an evaluation with and was thank the Lord was accepted in to there program. I have been there ever since. I have been on Lidocaine Infusions at first along with Pain Medications but unfortunately didn't work. I was than placed on Ketamine Infusions with Pain Medications and that has been helping since than. It has been well over a year now, and only now am I having some side affects and we are meeting to re-evaluate them. Stay tuned. :) 

As far as my health goes...Originally like I stated earlier, I had my right shoulder and left knee affected, now I am sadly, full body and am losing muscles in my left shoulder. I can barely stand the weight of my own left arm. I use a cane to walk and a sling quiet a bit for my left arm. I can barely drive my car anymore, unless I am feeling really strong and alert. Not to often, in other words. On my RSD/CRPS team support, Pain Specialist, Family Physician, Neurologist.  Anyone else as needed, like with my current surgeon. Now I need another surgical procedure done but not a every day thing. :) Thank goodness!  I wish we could get more help, we need more support from our insurance companies with medications (very expensive), we need more doctors up to date with current medical information, we need more nurses trained on proper procedures for different treatments. I have run into so many nurses who act like they know what they are doing, and sadly, they don't have a clue. :( But we have to know everything and teach them! That one always gets me the most. I have to typically teach them about a procedure and if not me, than my husband does.  How strange is this? Very common occurrence.  But most importantly of all...WE NEED MORE DOCTORS WHO KNOW ABOUT RSD/CRPS..PLEASE DON'T GIVE UP ON US!!!!!  We need YOU now!  Gentle hugs to all who suffer with pain.  Your friend/mentor, Laura

Megan

I have two angels, one is my neighbor Liz. She has COPD and is a cancer survivor herself. I moved into this disabled and elderly building and have been on a downward spiral. I've been banned from cooking other than the microwave so she cooks my dinner every night because I was living on instant oatmeal and bananas for months. She goes to doctor appointments with me, helps me with the medicaid/medicare confusion and has been a godsend. She helped me get my cat, actually insisted I needed an animal. She makes me stay with her when I'm "off" as I have seizures and nothing I can do will ever replace her kindness. She has adopted me as her daughter and treats me like one of her own. Now she is looking at some more health problems of her own so please send prayers and kind thoughts. My other angel is my friend Karen. When I had to leave my old apartment on very short notice due to problems my old room mate's girlfriend at the time caused, she took me in, gave me a room, went to doctor appointments and let me stay with her for nine months until I found where I am now. Another kindness that can never, ever be repaid. I just wanted to share.

Terri

The more that I research RSD/CRPS, the more I question the statement that this is not curable. since this is not a for sure proven fact, stop throwing it out in the universe! I realize that I am new to this symptom - but I can't cave in on that inevitable conclusion. I am battling RSD that was diagnosed after major shoulder surgery in mid 2010. 2 months into this, we determined that my blackberry infused carpal tunnel issues were most probably initiating the RSD in my dominant left hand (same shoulder surgery). The second surgery helped immensely - I went off lyrica and RSD came roaring back. I am now finished with 6 of the 7 weekly stellate ganglion blocks. We are seeing further results, and after giving my body a rest from them, we may do another series of blocks. My employer has been amazing in their support - I have up to now had a very successful career in a highly demanding job. I don't know for how much longer they will hold my spot for me. I just don't know where this path is going to lead me - I sure never imagined being on it - I had never heard of RSD - nor had my friends, family, or employer (which in itself is a shame). What I do know is that our minds are amazing tools that we need to engage internally - we need to believe in our bodies, minds, and spirits that we can beat RSD/CRPS - what can that possibly hurt? Maybe I am thinking unrealistically, but it keeps me going in the operating room each week, in the pain management classes, in all that i have done and all that i will do to beat this.

Pattie

Zoe

My name is Zoe and I'm 16. It was October the 23rd last year (2009), a grey Friday morning. All that was on my mind was the thought of finally breaking up for half term. All I wanted was for time to hurry for the final bell to go at 3.25, but that was over 6 hours away. I slowly made my way up to German on the 2nd floor, dragging my feet up the stairs. German on a Friday morning was your usual lesson of listening to Miss go through our speaking booklet and presentations on the board. I was in my last year of secondary school, year 11. Said to be the best year. But little did I know that that very morning would be the start of something that would dramatically change my life for good.

Not long gone past half 9, just sitting there in class, a sudden stabbing pain rushed through my right arm. At first I didnt think anything of it (thinking it would pass), and left for next lesson. I had instant swelling. I kept trying to write but it was impossible. Eventually my friend had to write for me whilst I tried not to cry. Come the end of second lesson I couldn't move my arm as the pain was excruciating. Concerned I went reception, where they had a look at my arm. As they touched it, I sat there in tears. All they could do was put it in a sling, and said to rest it and if continued to get it checked out as something was not right. After a couple of days resting it, the pain seemed to ease. Later that day my mum took me into London to see a film. We got out of the film and were going to go eat, until my arm swelled dramatically and started to turn violet. I was in tears and that's when my mum said " that's it, we're going A&E". I've never been keen on the thought of hospitals so I was reluctant but my mum gave me no choice. There they said it was a soft tissue injury; a couple of weeks at most and it will be back to normal. I was put on neurofen and told to put ice on it regularly. A week later I was told by my GP to also take paracetamol. A week later I became violently ill. I was advised to stop them as it was unsure whether it was the medicines or a virus making me ill and when I did stop them I found out they done nothing for my pain. As my mum became more concerned we went back to my GP. My GP said that the whole problem was all because I was not moving my arm, "that's why it is discoloured and swollen". She then came towards me telling my mum "you need to do this with her at least 3 times a day again and again". I started to flinch away as she went to grab my arm. As she pulled my arm towards her straight, with what felt as a tight grip, I screamed. She started moving and bending my arm in all sorts of angles whilst I sat there sobbing with tears streaming down my face. I was in too much pain to try and speak any words. Soon after my mum said authoritatively "get off of her!". As she stopped, she asked if I was okay. All I could do was give her a straight face. How heartless could she be? It was then that my mum explained that I was actually in too much to move my arm. She came back saying I shouldn't still have that pain if it was a soft tissue injury. It was then that she agreed to the idea that I should see a specialist as something was not right.

A month later, I was finally referred to a specialist Rheumatologist. As soon as I walked in, looking at my arm his mouth dropped. He Immediately got up CRPS on the internet. After blood tests, x-rays and most importantly a physical assessment I was diagnosed. I was shocked. You never think that anything like that could happen to you. As he explained to me that "CRPS is a chronic, progressive disease, causing nerves to misfire, sending constant pain signals to the brain. It can spread to any limb in your body. There is NO cure and it is hard to treat, but you hope to get it into 'remission' where it is controlled" It felt as if everything just collapsed as I sat there with tears streaming down my face. So many questions were going through my mind. As he finished telling me what the symptoms were and different treatments, we left. That car journey home was silent. As we got into the car my mum asked "You alright?" as I simply answered "Yup". That afternoon when we got in, I locked myself in my room, crying, wanting to understand why. 

I started off with Physio at the hospital. The woman wasn't sure the diagnosis was right and said I only needed it once a week. I then also started hydrotherapy once a week but after a couple of weeks my consultant was annoyed that they were not giving me correct treatment. I then met another physiotherapist who done a full assessment to tell me the whole problem was in my back. He agreed with the CRPS but thought if we got rid of 'my back problem' then the CRPS would disappear without treatment needed. When I later saw my consultant he told me he didn't want me to go back there so for the mean time he would send me to a pain specialist who would give me something for my pain. Instead he immediately started to ask me for consent to have surgery on my neck without even bothering to make a clinical assessment or telling me the benefits or risks of the procedure. When asked what they were, he said that he doubted it will help and it could make things worse. There is complex structures in the neck and we could hit something. I didn't like him and I wasn't keen to go back so for a second opinion we asked my consultant. As we were on private my consultant said he was simply in it for the money. Come December I had to have scribes for my mock exams; still with no effective treatment. Come February my condition had spread from not just being my right arm (from my finger tips to elbow) but to my right leg. This made things even more difficult physically and emotionally. It was now difficult to walk meaning I had to use the lift at school and had to face the realization of having scribes still for the up coming (final) summer exams. School life was getting harder and I kept being told to take a wheelchair but I wasn't going to give up yet though. 

About a month later i developed the condition in my left hand, meaning I only had one limb that wasn't effected. But I couldn't give up on everything. Being in year 11, I was going to make sure I sat my GCSE's even if it meant attending school on the days when I was in an unreal amount of pain. From last December we had been fighting for me to receive specialist care at the Royal National Hospital for Rheumatic Diseases. After such bad care my consultant decided that it was the best chance of getting into remission. The first time round my PCT disagreed to approve the funding of £8,000 due to a poor referral letter. Second time round they agreed only for assessment at a place of my choice; obviously Bath but not treatment as they thought that the intensive physio would not help at all. At Bath they decided they would fight the case for the funding as they thought I needed the treatment at their hospital. Finally in late May, the PCT agreed to give the funding for treatment and a month later I was going down to Bath for a weeks intensive physiotherapy. After that week they would support me at home. The treatment was hard and emotional. With at least 3 hours of physio a day and activities and 2 of physiology it was draining. I had a main physiotherapist and psychologist who I worked one on one with but a team of about 5 in total; of dedicated staff who gave expert care. Looking back and seeing how much things are improving, I have no doubt fighting for the funding was the right thing to do. I have had a couple of set backs but it hasn't stopped me. Before I went for treatment in June I was told that I would never walk properly again, meaning that I would end up in a wheelchair. That scared me the most. But now I can do so much more. for example I can walk properly most of the time, cut up my own food, and ran for the first time in a year a couple of months ago. I still live life with constant pain, sometimes excruciating and the symptoms which are up and down - which will probably never go, and the chances of a flare up are high but the therapy has helped me to learn ways of working through it. At the moment I'm fighting to get back to be able to write normally with my right hand due to fatigue. But there is hope! In August I found out I passed my gcse's achieving 2 A*s, 1 A, 8 B's and 2 Cs! & Just 2 months after being in Bath for treatment I set myself a challenge of walking 7 miles to raise money for the hospital I had treatment at and although I wasn't even a 1/4 of the way through and had a limp, but I finished it. Something good always comes out of something bad.

Keep your head up high, what you have or are going through is making you who you are now. We may live with this horrible disease but it does not own us!   

'When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.'
 
Soft hugs, Zoe.

Jessica

I turned over for the hundredth time that night, screaming on the inside from the pain I was forced to endure. When you walk through hell there’s no one there to hold your hand, and this was most certainly hell. I was on fire, a fire that can’t be put out.

They say that it is like dousing your hand in gasoline and then lighting it. Imagine that the flame never goes out and there is no hope that it ever will. As if things couldn’t get worse, rub the raw flesh with sandpaper mixed with salt. I was surprised that no one could see the flames jumping off of my arm. In an interesting twist I lay in my bunk on the tour bus trying to keeping warm. It was a requirement to keep the temperature in the bus below thirty. I lay there hoping to die, hoping to keep my dream alive for I knew that as soon as I left that bunk I would never come back.

What began as an amazing opportunity of a lifetime spiraled downward into the days and nights of endless pain. I was on the Ministry Team, a feat that few attained especially after the week long “try out” called Josiah’s Road. This was what I had dreamed of; touring the country and putting on Christian conferences for teenagers. I wanted this more than anything and I had worked hard for it. Climbing aboard the bus is what did it. It wasn’t until I climbed aboard that bus that the nightmare began. The bus rocked back and forth as it rattled down the road. Every bump in the road caused more and more pain. I didn’t realize it then, but that pain was nothing compared to the fire that was to come.

My sprained wrist seemed to be hurting me more as time wore on. The doctor said that it wasn’t broken and would be better in a few days. It had been a few weeks by the time we arrived at our first event. It had only taken a couple of days on the bus to create the monster that still devours my arm almost five years later.

I was taken to a urgent care clinic and, after hardly looking at my wrist, the doctor diagnosed a sprained wrist. I felt like pulling out my hair. How dare he tell me that it was just a sprained wrist when it had been weeks! I was angry and hurt but I had to pull myself together and take the medicine he prescribed. I couldn’t let my team see me crying or blubbering. I had to; no wanted to, stay strong for them. They had an event to put on, they didn’t need to be worrying about me.

At the event the sound from the band was painful and so they put me in the cab of one of the trucks so I could rest where it was quiet. The Vicodin kept me sedate, but the pain never went away. I lay there in the dark with tears streaming down my face and no motivation to wipe them away.

Continuing on tour I would stop at two more clinics before winding up in a hospital in Georgia. “You have RSD”, the doctor told me. I was sitting on a cold metal table but the chill I felt didn’t come from that. I froze. My breath caught in my chest and my heart skipped a beat as I waited for her to continue. “That’s reflex sympathetic dystrophy; it is a problem with your nerves. We don’t know what causes it, and there’s no cure. A nerve block might help the pain.”

I sat there dazed. I had what? No cure? A what block? I had too many questions floating through my mind and my mouth had suddenly stopped working. I just stared back at her, where to begin?

Soon I was flying to Colorado to get a second opinion. I would go through a string of doctors, none of which had even heard of RSD. I finally gave up. What else was there to do? Not one doctor would give a diagnosis. Life at home became unbearable.

While the pain was still sucking the life out of me my family began criticizing me.

I was finally diagnosed; four and a half years later, with the very same diagnosis I had received in that night in Alabama. The years of pain have made me strong, and the years of suffering have made me tender; Strong enough to keep pressing on in spite of the pain, and tender enough to help others through theirs. 

I currently have a beautiful 5 month old daughter and an amazing husband who refuses to ever leave me because of the RSD. Though I can not work it is a blessing in disguise because I can stay home with my daughter. I have tried many blocks and injections and nothing has worked. We are currently searching for the next step in my treatment. I long for the things that I had to give up because of the RSD, especially friendships. This has been very lonely and isolating and I hope that this month will help to make people aware of the hardships and frustrations that come with RSD.

Krista H.

I have a disorder called Complex Regional Pain Syndrome (CRPS). It's also called Reflex Sympathetic Dystrophy (RSD). It's a chronic nerve pain disorder. CRPS/RSD is very painful. Anyone can get it. It can spread from limb to limb. There is NO CURE, but it's treatable and possibly reversible from being a long term condition IF caught in time by doctors. There are 4 stages to RSD and I have Stage 2 already.

I have been living with this horrible disorder since November 2006 at the age of 35. It all started when I was admitted into the hospital to get some intravenous drugs because I had a migraine for a week. My veins are hard to find. The IV had to be place in a vein on my left foot. Two nurses tried to get the IV started on my foot, but they were unsuccessful. The attending nurse called down to Short Stay for an Anesthetist to run a central IV line in my neck. The Anesthetist’s working that day told the nurse it would have to wait until the next day. The nurse kept calling the Anesthetist, but no one seemed to care. This went on for five hours. Finally, the nurse gave me a pill to take to ease the migraine, but all that did was made me sick to my stomach. Then a pediatric nurse was able to get the IV started in my foot. I had excruciating pain in this vein every time the IV line was flushed out and medicine was run through it.

Once I got home from the hospital, my foot was never the same. It hurt to put pressure on my foot. The vein was swollen and purple. My foot was so swollen I couldn't even wear a shoe. I applied ice to my foot to get the swelling down. I know now that was a big mistake. You should never apply ice on injured limb not knowing if it will turn into CRPS/RSD.

My foot was not getting any better. I had missed so many days from work. I went to see my primary physician about my foot. She diagnosed the vein on my foot as phlebitis (blood clot). My doctor told me that my vein was non-functional and I couldn't even use this vein to have blood drawn anymore. I was on several antibiotics for the inflammation. My doctor first tried Cephalexin, then Levaquin, and finally Doxycycline. However, these antibiotics didn't take down the swelling. I was also on several pain medicines. I was first on Hydrocodone. It made me extremely nauseous and dizzy. Then I was on Meloxicam and Ketorolac Tromethamine. However, these medicines didn't help with the pain at all. She also recommended keeping moist heat on my foot. My doctor then referred me to a vascular specialist since I was not getting any better.

The vascular specialist could not understand why my vein was not healing and causing me so much pain. He said he could remove the vein, but he didn't recommend it and he couldn't guarantee this would help. He wanted me to try the Lidoderm Patch and take aspirin round the clock for a month. I continued to keep moist heat on my foot when not wearing the Lidoderm Patch. The patch and aspirins helped some with the pain, but I was still in a lot of pain.

In the middle of January 2007, I was FIRED from my job because I had missed so much work. I was FIRED over the phone of all things. This was a blessing in a way. Now, I could rest my foot and keep moist heat on it, as I should be doing.

After a month, I was still no better. The vascular specialist said it would probably take my foot some time to heal. I continued to still take aspirin round the clock, use the Lidoderm Patch, and keep moist heat on my foot.

It had been five months since my foot was injured. I applied for Social Security Disability in April 2007. I could have drawn unemployment, but you had to be able to work. The pain was getting worse by the end of the April. I went back to the vascular specialist, but he was out of ideas. He suggested that maybe I had some type of nerve problem.

I went to my neurologist to see if he could help. They ran an EMG study to test the nerves and muscles on my left foot. He informed me that I had permanent nerve damage (the pain nerve) on my left foot. There is no cure for this type of nerve damage. He said more than likely when the nurse(s) inserted the IV needle in my vein that they hit and damaged the pain nerve. The only medicine he gave me was an anti-depressant called Cymbalta. He said this would help with the pain as well. He said, "There was not much more you can do for nerve damage."

I was approved for Social Security Disability in July 2007. I continued to live my life in pain. My last visit with the neurologist was in October 2007. This doctor was not trying very hard to help me with my pain. I went back to my primary physician for a second opinion. She put me on Lyrica for the pain. I continued to keep my foot elevated and keep moist heat on it. I gave Lyrica some time to work; even though, it was making me very nauseous and dizzy.

I was referred to another neurologist out of town that specialized in nerve damage. Finally, I was diagnosed correctly. He said I had Complex Regional Pain Syndrome ~ Stage II. He told me to stop the Lyrica since it was making me so sick. In place of Lyrica, he put me on Neurontin three times a day. Neurontin didn't make me so sick to my stomach like Lyrica did. I went to see this doctor throughout 2008.

I transferred to a pain management doctor that was local who knew a lot about CRPS/RSD in 2009. He has been more helpful than the other doctors I have seen. I'm still taking Neurontin, which the dosage has been changed several times. I'm currently taking 300mg in the morning and 600mg at night. I'm still taking Cymbalta once a day. However, the Lidoderm Patch is no longer helping.

I've had some setbacks since June 2009. The pain in my foot is getting worse. My CRPS is spreading up to my leg now. I've started to use the heating pad and/or ThermaCare patch on foot/leg. This is helping some. I'm starting to have short-term memory problems and difficulties concentrating, which is one of the symptoms of CRPS.

I have discussed with my pain management doctor about some of the other treatments available. I could have a nerve block performed or a spinal cord stimulation implanted, but it involves an IV needle. As I stated earlier, I got nerve damage and CRPS due to an IV needle. Not only that my veins are so hard to find. My doctor believes my CRPS could progress more than it has if I went through these treatments. My only option right now is treating my CRPS through pain medications.

It has become very painful and difficult walking on my left foot. I got a Hoveround Power Chair in October 2009. Even though I have a power chair now I am still walking just a little bit on my foot. I do not want my left foot to get stiff or lock up. There is a saying "If you don't use it you will loss it!"

CRPS has changed my life forever. I was an active person and had a successful job. Now, I have trouble walking small distances. My left foot swells up every time I walk. My foot is always cold, sensitive to touch, and is always propped up. The pain feels like my foot is on FIRE. I have trouble sleeping at night because of the constant pain. I wake up in the mornings and go to bed at night in pain. From the time I get up in the mornings, I'm either sitting or lying on the couch.

I have learned to cope by living my life day-to-day. However, some days are more painful than others. The Winter and Rainy seasons makes the pain worse. The things that do help when I'm in pain are meditation, prayer, using a heated blanket, playing a computer game, or even watching a funny movie. Giving up isn't in my vocabulary and I will not let this illness beat me. I have a very good attitude on life and I will never give up without a fight. I pray every night for a CURE.

The only thing that keeps me sane is writing about Complex Regional Pain Syndrome (CRPS) and educating people on this disorder, and meeting and supporting other people with this horrible disorder online. I couldn't get through my day without my family, my best friend, my RSD Angels on Facebook and Twitter, and most of all my faith in God.

I'm at peace with my life. I can't change what has happened to me, but I can move forward and live my life the best way I can. CRPS is not just a painful disorder, but it changes every aspect of your life. I hope everyone reading this understands a little better how CRPS changes your life. It is so important for the medical profession to understand that CRPS is a REAL and ALIVE illness. All doctors especially primary physicians and neurologists need to be educated about CRPS and the proper treatment to be administered to the patient. We are not faking the pain, it is NOT all in our head, and we are not a mental case.

Christa

I am starting to think my body has a mind of its own.

When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. They called a squad but when they came, but they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn't call the squad at all.

My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to trying to probe out  that I wasn't really blind. I walked into a sharp edged table and put a gash in my knee. She still didn't believe me.

This went on for 7 months, no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by my excess fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Cerebri which is a buildup of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves.

I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn't a cure for that either but there is a high rate of remission. I went in and out 2 times finally in remission for a while.

Flash forward to April 7th, 2008. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced the weekend before and they threatened my job if I didn't take it out. I almost wished I had walked away but hey....anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart....big no no. It went rouge and ran into the back of my left heel....I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.. The blood in my shoe wasn't customer friendly so they let me go home but I went to Urgent Care. They said I sprained it and it might be something else but to follow up with a different Dr. So I did.

I went to a “mouse” of a Doctor he put me in a walking boot. My foot started hurting....more then I would think a torn ligament and a sprain would be. I kept telling the Doctor but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace.....he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said, "It might be RSD", but nothing was really said after. I stayed pretty laid up and bed riden for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn't getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had was RSD. I was so pissed and frustrated by this time that I wanted to spit.

My mom talked to a Doctor friend of hers and he pointed us in the direction of the best RSD Doctor in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympathetic Nerve Block and did different narcotics. I ended up in the hospital after the Nerve Block with double the pain. They gave me 3 rounds of dililudid before I could stand the pain again. So about November of 2008 he finally said that I should get a Lumbar Stimulator or also called a Spinal Cord Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain. It works to a degree but I still got about 70 to 95% pain most days. I got it in January 2009 and around May 2009 it died and wouldn’t recharge. So finally in October of 2009 they gave me surgery to give me a replacement battery that didn’t have to be recharged. Since the start of my RSD it has spread from just being localized to just my left ankle to now it has taken over my whole left side of my body.

People always ask me if my life is still worth living because of all I have been through. Of course life is still worth living. I have met so many people after I was diagnosed with RSD. In July I was married to the love of my life, Joey, and I wouldn't take back a day I have spent with him. He truly is my rock and my strong hold. Then there is my friend Krista whom I started this organization with and I love her just as much as anyone could love someone. Then there is Flora who has been my sister in every sense of the world except for blood. She picked me up when I hated myself and taught me to see the positive in life and not the negative, and for that I thank her.

These are all people I wouldn’t have met in a million years. Also RSD/CRPS Doesn’t Own Me wouldn’t be also. It is my baby and I never realized it would blow up as big as it has. It keeps me hopeful that someone else who has been diagnosed with RSD/CRPS will find and hear about the information that we try to put out and goes into remission all the faster. We want to see that happen to each and every person afflicted with this horrid disease. We want to see every person’s family to support them and try to understand because without support we feel lost and hopeless.

I am so glad to be a part of this wide world of awareness and I pray that I will continue to be a part of it!

Debbie

When my daughter was born 38 years ago, she was born with a physical disability. Her arms stopped growing at her elbows and her right leg was fused at the hip bone and her leg stopped growing about knee length which causes her to wear a prosthetic limb so she can walk properly. She wasn’t able to walk until she was 3 years old. Through a lot of physical therapy and tears she managed to do things her way.

Everyone she came in contact with was astounded at the things she could do on her own. She didn’t let a physical disability stop her. In her eyes she wasn’t any different than the other children. It is true that she couldn’t do all the things other children do but she didn’t let that stop her. She was so independent and she wanted to do everything herself.

When she was in high school she self taught herself to type on a computer. She even learned everything about computers without the help of others. All her teachers marveled at the things she could do. She has the most beautiful handwriting it puts my handwriting to shame.

After high school she enrolled in a technical college and took computer courses to further her education. She worked part time with her dad in an insurance agency.

When we moved to Northern Georgia she applied and got a job at the technical college in the IT Computer department. She worked full time during the day and took more courses at night. She worked at this job for 8 years. She then got a job at a medical coding business and worked there for almost a year before she was injured and consequently got RSD.

She went into the hospital for a severe migraine headache. She had tried for over a week with the help of her doctor to get rid of the headache. Because of her disability whenever blood was taken or IV put in it had to be done in the vein on the top of her foot. When the nurses tried to insert the IV they hit a nerve. We found out later on that she developed RSD from the IV. After she got home from the hospital she couldn’t walk on her leg even with her Prosthesis. She was in so much pain from the nerve being struck with the needle that she couldn’t go back to work. She was out for a couple of weeks and she managed to go back for a half day of work. While we were eating supper that night she received a phone call from her office. She was fired over the phone.

We kept going from doctor to doctor to find out why she was in so much pain. When we finally found out it was too late for her to get disability from her job that she was fired from.

She is now on SSI Disability. If she had to live on her own she wouldn’t be able to support herself. We help her with her expenses when we can.

A typical day for her is EXCRUCIATING PAIN round the clock. She does go to a pain doctor. The medicine doesn’t really get rid of the pain. The medicine makes her sleepy and groggy. She sleeps most of the day. When everyone else goes to bed at night, she can’t sleep because she is in so much pain or she has insomnia because she slept during the day. This is no life for a 38 year old young lady. Before this happened she was a thriving self supporting person, with a full time job and a social life. Now the rug has been pulled out from under her and she doesn’t smile much, is in constant pain and unlike when she was a child she is dependent on her family to help her get through each day. She very seldom leaves the house because when she does the pain gets worse for about a week. She has to use a wheelchair if she walks very far. Even in the wheelchair her leg hurts from hanging down. I don’t know what she would do if something happened to her dad and me.

It is so sad to see her having to live with all this pain on a daily basis. All the fun of living a full life has been taken away from her. How many people do you know that were born disabled and are afflicted with chronic nerve pain daily, yet try to put up a brave face so you won’t know how badly they are hurting?.

We tried to sue the hospital but no lawyer would take our case because you couldn’t actually see anything physically wrong with them.

It just breaks my heart to know that there is no cure for RSD and nothing we do can help our daughter.

Before she was injured there wasn’t anything she wouldn’t try to accomplish. She did better than most people who have two good legs to walk on.

I hope and pray that this disease will be brought out in the open so maybe a cure can be found.


Denise
My name is Denise and I am a married, 38 year old, female, who has 5 chronic pain conditions.  It all started in April 2006 when I thought I was just going in for a simple surgical procedure on my toe.  I was an outpatient, and was not even put under, had a local only.  Three weeks after surgery, I was still on crutches, and the pain getting worse, the swelling uncontrollable and my foot ice cold and so sensitive to touch I would scream in agony whenever someone tried to change the dressing.  I called my Dr and he said I need you in immediately.  Without telling me what he was doing he pulled the pin out 3 weeks early, thinking maybe my body rejected the pin.  He wanted me to see a pain management Dr ASAP.  He thought I might have RSD but never said it just made some phone calls for me and got me an appointment.  Well, that day in May changed my life forever, and the journey began on the RSD path from hell.

I had 6 lumbar sympathetic blocks, lots of meds, and PT before I showed any improvement.  Block #7 gave me better results and the swelling that was up to my knee finally started going down some.  It took 6 months of blocks and PT before I reached a plateau of improvement.  I was fortunate at the time, my Dr knew RSD, knew where to send me, and my RSD was contained in the left foot.  This is the exception to most that spend years and handfuls of doctors and testing just to be told it is all in your head.  But, I had severe back pain, leg pain and testing showed I needed a spinal fusion. I have since been diagnosed with spinal stenosis, degenerative disk disease and grade III spondylolesthesis. Recently, I was also diagnosed with herniated disks in my neck at C5-C6 and degenerative changes at C6-C7 as well as bone spurs. I also have been told I have triple crush injury, meaning I have pinched nerves in wrists, elbows and several in the neck.  I have been adding diagnosis to the list as they are added to my charts.  I have chronic back pain, myofascial chronic pain, rib dysfunction and fibromyalgia!  Because of these other problems my PM (pain management) Doctors will not say whether my RSD has spread because it is so difficult to separate all the symptoms I have and all the current diagnosis. 

I battle weekly with the health insurance company who refuses to pay for what my medical doctors develop for my treatment plan.  The added stress and anxiety from not getting approvals for treatment that may reduce my pain levels contributed to higher pain, sleeplessness, depression and an attitude of wanting to just throw in the towel.  Suicide is the #1 killer of RSD and I understand why. 

I lost my job of 9 years in April of 2007, after never missing a day before the RSD.  I could no longer concentrate, I was forgetting steps, did not remember where I was and what I was doing, I was in constant pain (could never get comfortable sitting, standing and moving),  could not sleep at all, blood pressure was spiking to stroke levels, was sick to stomach, dizzy and suffering migraines daily (from medication side effects).  The last day I worked I crashed my van, I had never had an accident before this.  My life was spinning out of control and I knew I could no longer risk driving. 

In July 2007, I was approved for Social Security Disability, without a lawyer on my first try in applying.  I can no longer perform daily chores without suffering terribly after completing them.  Things I use to take for granted like walking, standing, sleeping, riding in a car, reaching, cooking, cleaning, doing laundry, chopping vegetables, washing dishes and taking care of my animals became impossible for me.  I lost friends, had no social life and just wanted to crawl in a dark hole and never emerge again.

RSD touches every part of your life.  It destroys you inside and out, taking away everything.  You question every single day what your purpose in life is now.  Why is there so much and pain suffering and what did I do to deserve this plight.  I feel guilt every day for being a burden upon my husband and family, for financial problems, for stress and added workload to everyone else, for withholding my husband from truly enjoying things we use to and no longer can………

There are positives though.  We know life is short and you never know from day to day what will happen, so we try to enjoy what we can when we can.  I found a network of friends online that understand, care, support and encourage you to fight each and every day.  RSD has brought me closer to God; my faith has been strengthened not weakened in all this.  I have hope for a better tomorrow.  I found a church that has welcomed my husband and me and really tries to understand my pain.  My writing has developed and my spiritual poetry has been brought to a higher level then what I ever imagined.  I now volunteer to do the weekly bulletin for church and I am the editor of the quarterly Newsletter.  I volunteer for usarsd.org as a telephone support operator for anyone needing assistance with RSD.  The best result is I learned how to advocate for my needs and my treatments.  My husband is a Godsend in my life.  He has stepped up in times of need and has showed his dedication to me in so many ways. 

RSD is an awful progressive neurological disease that has changed my life, my husband’s life, my family and friend’s life and the lives of millions around the world.  Help us spread awareness so maybe someday we might have a cure!!!! Thank You

Sandy

In doing research  I have become a bit more knowledgeable of my affliction. When I first developed RSD, I thought I was going crazy. I was having difficulty remembering things, I couldn’t see properly. I had difficulty finishing my sentences. Once tolerant of my children, I could no longer stand the sound of the noises they made. Everything hurt my ears. Now I come to find that this is all normal for an RSD patient. 

It is normal to wonder what it feels like for an RSD patient. Each of us feels different and came about our condition in a different way. My story is a very long story that began on 1/31/07 when I injured my arm trying to operate a faulty piece of equipment at work. I underwent so many tests and procedures. I had an epidural cervical steroid injection which left me looking like I had a stroke. 2 years later I still have a limp, but at least I no longer need a cane. I then had an anterior discectomy with fusion of C6-7. That’s the medical way of saying they removed a disc from my neck and put in a titanium plate and screws to hold together the surrounding vertebrae. They did a great job on that. It was a same day surgery; they cut through the front of my neck and glued it together for minimal scarring. I still catch people staring at my throat though. Now I have a spinal cord stimulator which was inserted while I was awake. This way I could tell the doctor if he was giving me adequate pain control. They also placed a battery pack high in my right buttock. There is an incision along my spine where the electrodes were inserted along my spinal cord. I have a rechargeable stimulator, so I typically recharge for maybe an hour every other week.  Just 2 more scars added to my body, but at least these are covered. This is actually 2 procedures because they do a trial one for a few days to see if it works before they insert a permanent one. 

I’ve had different types of RSD pain. In the beginning it was my entire right arm with intense pain from the initial injury and a pinpoint spot that was stinging and burning. With PT and treatment some of that pain had dissipated. I returned to work and things grew worse. The arm started cramping so badly and my hand would freeze up in one position. My hand started to become discolored and freezing cold as if someone were pouring ice into my veins then taking a sledgehammer and having a go at it for awhile. Soon after that it intensified to a crushing feeling equivalent to putting my hand on a high way during rush hour. This pain is so intense it leaves me screaming into a pillow most days. I have the feeling of fire that started in that pin point area. It has spread through my right arm, areas in my left arm and areas in my right leg. I can’t even scream when I feel like my muscles are being ripped from the bone because at that point, it’s like the air is being sucked from my lungs. In my upper arm I also get the feeling that the bones are being snapped in half. In the summer I would have to wear sweatshirt over my right arm just so I could have the A/C on because I cannot tolerate the cold. I do not typically go outside in the winter unless I have to, five minutes in cold air can cause up to an hour of painful tears. Days spent in bed because it hurt to wear my clothes and I would have to strip down to nothing but a sheet. 

RSD affects every aspect of your life. It changes your relationships. It changes who you are. I was very career oriented; now I feel it has stolen my career from me. I have always fought for everything I have. I have my dream life because I worked for it and I fought for all of it and now 3 letters leave me feeling like I am a failure, like I have accomplished nothing with my life other than get married and have 2 kids. I can no longer provide for my family and have become a burden. My husband has to play the role of both parents at times, cooking, cleaning, yard work, laundry, working, tending to a set of 2 year old twins and then he would have to spend his evening all alone because the twins would go to bed at 8 or 9 and I would soon follow because my meds made me so tired.

Mental health becomes an issue as well. Most people suffer from such terrible insomnia that they start to lose their minds. I’ve always been an insomniac, but now my sleeping pills do not even help and I have begun falling in the middle of the night. I was suffering from post partum depression when I got injured, but now I am being treated for major depressive disorder and Post Traumatic Stress Disorder. I can understand why when I look at my life now. I live day in and day out with incredible pain and I know there is no end in sight. I know this can only get worse. It’s already spreading. There are times that it is so intense and I am thankful to be alone so that my tears can run freely and my screams rip from my chest and all I can think is “Please God, just take me, please, I can’t take this pain”. Believe it or not, it has nothing to do with suicide, it’s just that you are in so much pain at the moment and no medication can touch it and nothing you do can change it and the only thing you can think of is becoming so weak and begging God to make a deal with you.

I try to think positively. It has always been my belief that everything happens for some reason though it may not reveal itself to us yet. I’ve always thought I lived a blessed life,(and I still do) maybe this was meant to knock me down a peg or 2. I am just sure of this silver lining that shines along this dismal cloud that hangs over me. You see, the lining is my family. I see them more, I got to see first steps, hear first words, tuck them in at night. When they were 1½-2 and they would see me cry in pain they would wobble over to me and hug my leg and tell me it was ok and not to cry Mommy. My daughter would kiss my boo boos and drape herself across me when I tried to isolate myself. She would run her hand through my hair. Before they turned 3 they knew where my incisions were and where not to hit Mommy. If they saw me cry, they would ask me if I was sad or if it was my bad arm. My son would pipe in “Mommy, take your medicine, go lay down.”

Should my kids have to grow up the way they do? Should they already know what RSD is? Should my husband have to see me go through this as well? I see how he looks at me. He is a wonderful man and would do anything for me in the world. That is the problem. He sees me in so much pain and there is nothing at all that he can do. I see the pain and the tears well up in his eyes. Then if he wants to caress my arm how do I tell him not to? How do you tell the love of your life that you cant stand to have him touch you now after 15 years because it hurts too much? I guess like workers comp tells me, I will just have to adjust. I will have to adjust to every part of my life being just a little bit different.
 
I wrote the preceding story about a year ago.  Not much has changed.  I was once on a long list of meds which has shortened some.  I was taken off Narcotics which wasnt as bad as i had imagined.  Now instead of a duragesic patch, percocet and lyrica, I am just on suboxone and neurontin.  I now have such bad double vision and light headedness that my driving is limited to my hometown and I have to find others to drive me to my appointments.  I'm back to using my cane now and then since my gait is rather unsteady.  Though undiagnosed, i am positive of the spread to my left arm and right leg and foot.  i think it has spread to the left leg as well.  Now my toes turn blue and there is that same awful pain, but I get through the days.  I have to.

Flora

Greetings, my name is Flora Langel DeKock. I am a 32 year old mother of a 9 year old millennium baby and a recent graduate with a BS in Religious Studies at the University of Northern Iowa. I excel with computer software and love learning new things.

Unfortunately for the last 10 years, I have been learning about something second hand and first hand for the last 2-4 years myself. Sometime prior to when my son was born, my mother twisted her left ankle triggering a normally easily treated disorder called sinus tarsai syndrome which causes the fluid in the ankle to act as if it is infected and create a puss like substance which pushes pressure on the joints in the ankle. Unfortunately as this was not treated properly right away, it is believed the beginning cause of my mothers initial diagnosis of RSDS. Known then as reflexive sympathetic dystrophy syndrome, which wasn't diagnosed until she was a solid 3 years into the symptoms. Once diagnosed, I started researching what could help her, what could slow it down, what not to do and what to do. As I researched, I found time and time again on sites saying that those afflicted should NOT immobilize the limb, should not ice the area, should not do aggressive physical therapy. Three things that are standard treatment for the symptoms she was suffering without recognizing the disorder was in place. These three things my mother was forced to do for three years until the point where she broke and couldn't take anymore.

My mothers condition and all of the research I suggested women had higher chances of contracting the disorder. At the time, documentation suggested caucasian women over 40 were also more likely to be diagnosed with it as well as there were documents that suggest a genetic link. Since then, this documentation has been altered as they are recognizing it earlier and finding it in children as young as toddlers. There has even been found a significant difference in Vietnam where males have it more frequently than women. Lastly, since the starting of the increase in study, there has not been found any verified genetic link. 

Since my mothers diagnosis RSDS has progressed into RSD and now been found to be just one of the the many conditions that are believed to be actually complex regional pain syndrome (CRPS).  Reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy are all believed to be complex regional pain syndrome type I where there is no definitive damage to the nerve the trigger this response in the sympathetic nervous system.

With all of this knowledge, I choose to take extra precautions and use warm moist heat packs, avoid immobilizing my limbs, and when they first addressed my sinus tarsai, the doctors ordered a gentle progression of my physical therapy to ensure not to re-injure or advance any of my symptoms of the RSD. My doctors, already familiar with my mothers case, took extra precautions when they preformed the surgery on my ankle that they otherwise could not do for my mother since her overlying issue of the CRPS could be extensively advanced if they were to attempt to treat it. During my surgery they did an epidural to ensure that if the RSD was present that it did not spread and if it was not present that they did not trigger it. As this is NOT a typical preventative 

procedure, I was extremely lucky to have such a supportive set of doctors for my case.

The doctors slowly and steadily watched my progression after the surgery where my symptoms that suggested RSD was present continued. At this point my surgeon sent me in for evaluation and treatment by one of the best doctors he knew in the area.
I had two injections of bupivicane and guided physical therapy for approximately 5 weeks. After an illness and inability to get to the office, I was denied continuing by my insurance. From that point on, I continued home based physical therapy with no supervision. Since the muscles kept ceasing up, I opted to also start going to a masseuse weekly to help address the issues with the muscles that caused them to tighten.

Since Fall of 2008, I have since seen a specialist that cannot confirm or deny the presence of RSD at that time because he did not see the symptoms. After running a series of tests, he could not find any signs of the RSD being present, but did find I ran positive for Lyme's Disease as well. Unfortunately, my last known exposure to a tick was when I was 11 years old. The Lyme's disease could have been influencing the RSD or the RSD could have triggered the Lyme's disease to resurface. I am still having problems with swelling and am currently on Ibuprofen and Neurontin 300 mg once a day to prevent the "neurological disorder" that causes stabbing pains all across my body and swelling mostly in my limbs but recently moved into my chest.

My primary physician has, as of June, opted for an injection of a steroid to address the swelling in my body and is now again pursuing leads to what is causing the swelling effecting both my soft tissue and my joints. Due to the potential side effects my doctors now testing for explanations for the symptoms. Most recently he tested for rheumatoid arthritis and Lupus and found me negative for both. Dependent on how the symptoms act they will pursue more tests at that time.

I've been extremely lucky to have already educated doctors in the symptoms and signs of RSD. Unfortunately, at the cost of my mothers health.

In regards to my personal life... As I said, I am a mother of a millennium baby. Joseph is my world. He takes care of me if I let him and I help him with what ever I can. I am technically a single mother but my ex of near 6 years and long time friend Leo still lives and assists me and my son with our life challenges. If Joe is sick, he cares for him. And if I'm sick, he sends me to bed and takes care of everything else.

I am very lucky and have so much to be grateful for. RSD in many ways opened my eyes to not just the horribleness of pain that the body TRULY is capable of creating, but also can show you who really cares about you and who is wavering. I only hope you are as bless with the amount of support I have been.


Jeff (Has RSD in his hands and can only write caps so please don't think he is yelling :))
WELL MY NAME IS JEFFREY HARTZOG AND I FIRST BECAME SICK IN JANUARY OF 2000. IT STARTED WITH WHAT I THOUGHT WAS A HEART ATTACK AFTER COMING HOME FROM WORK. I WENT TO THE HOSPITAL IN AN AMBULANCE AS THERE WAS A HUGE SNOW STORM GOING ON AND ROADS WERE VERY SLICK IT ENDED UP NOT BEING A HEART ATTACK THANK GOD BUT THIS STARTED WHAT WOULD PROVE TO BE A LONG LINE OF MEDICAL VISITS AND PROCEDURES FOR SURE.

AFTER THE INITIAL NIGHT I WENT THROUGH AS I SAID SEVERAL MEDICAL PROCEDURES FROM A HEART CATHERIZATION TO UMBILICAL HERNIA SURGERY AND MAY OTHER TESTS FROM EEG’S, EMG’S AND MANY VISITS TO THE ER TO EVEN SPEAK OF EVERY ONE OF THEM. AFTER 5 MONTHS OF GOING TO DR’S I FINALLY GOT A CHIROPRACTOR TO ORDER MRI OF MY BACK FOR ME AS I HAD MENTIONED THIS AS POSSIBILITY TO TWO DR’S, NEITHER OF WHICH THOUGHT I WAS OLD ENOUGH FOR BACK PROBLEM, NOR THOUGHT IT WAS THE CAUSE OF MY HEALTH PROBLEMS AT THE TIME. MY MAIN SYMPTOMS AT THAT TIME SEEMS A FEELING OF DIZZINESS AND PARTIAL PARALYSIS THAT HAPPENED FOR NO APPARENT REASON AT ANY GIVEN TIME. WELL THE MRI PROVED INDEED THAT MY BACK WAS FOUND TO BE THE CAUSE OF MY HEALTH PROBLEMS AS I HAD A RUPTURED DISC AND BONE SPUR AT THE T11-12 LEVEL THAT WERE COMPRESSING MY SPINAL CORD 50% AND THAT WAS WHILE LAYING DOWN? I WAS THEN IMMEDIATELY SENT TO WAKE FOREST BAPTIST HOSPITAL FOR EVALUATION AND WAS TOLD SURGERY WAS NEEDED AND ONLY OPTION AT THAT POINT! THIS IS WHERE THE REAL MEDICAL ISSUES, OR NIGHTMARE, STARTED FOR ME RATHER THAN ENDING HONESTLY.

I HAD SPINAL SURGERY ON JUNE 19 OF 2000 TO CORRECT THE SPINAL CORD COMPRESSION AND INSTEAD OF STANDARD PROCEDURE FOR THE THORASIC DISC AREA THE SURGEON CHOSE TO DO WHAT IS CALLED A COSTOSTRANVERSECTOMY IN WHICH IN STEAD OF GOING IN THROUGH MY STOMACH HE WENT IN THROUGH BACK BUT CUT WAS ABOUT 4 INCES OFF THE CENTER LINE OF SPINE AND ABOUT 8-9 INCHES LONG. THE SURGEON WENT IN AT AN ANGLE CUTTING THROUGH THE MAIN MUSLCES OF MY UPPER BACK “AT THE TIME I DIDN’T KNOW THAT THIS WASN’T THE STANDARD PROCEDURE FOR THORACIC DISC SURGERY?” STILL I THOUGHT THIS WOULD SOLVE MY PROBLEMS AND WAS JUST HAPPY TO KNOW WHAT WAS GOING ON WITH MY BODY AFTER BEING THROUGH SO MANY MEDICAL PROCEDURES OVER THE LAST 5 MONTHS AND WAS READY FOR THE SURGERY SO I COULD HEAL, GET BETTER AND ON WITH MY LIFE. UNFORTUNATELY THIS WAS JUST THE BEGINNING OF A NIGHTMARE RATHER THAN THE END OF MY MEDICAL ISSUES FOR SURE AS INSTEAD OF ENDING MY MEDICAL ISSUES IT ON GREAT COMPLICATED THEM AS THREE DAYS FOLLOWING IS WHEN THE NIGHTMARE OF RSD/CRPS STARTED?             

ABOUT THREE DAYS AFTER MY BACK SURGERY WHILE STILL IN THE HOSPITAL THE PAIN WE ALL KNOW AS THE RSD BURNING PAIN FROM HELL STARTED AND IT WAS 100 TIMES WORSE THAN ANY PAIN I COULD HAVE IMAGINED BEFORE SURGERY FOR SURE ALONG WITH OTHER SYMPTOMS. I WAS CONTINUALLY TOLD IN THE HOSPITAL THIS WAS NORMAL OF COURSE, AS IT WAS FROM IRRITATION TO THE SPINAL CORD AND NERVES FROM THE SURGERY. SWELLING WAS ALSO HORRIBLE ALL OVER MY ENTIRE BACK AND AROUND TO MY FRONT LEFT ABDOMINAL AND CHEST WALL AREA AS WELL. I LEFT THE HOSPITAL AFTER ONLY 4 DAYS AFTER SURGERY EVEN THOUGH I TOLD THEM SOMETHING DIDN’T FEEL RIGHT AS IT WAS LIKE THEY WERE PUSHING ME OUT THE DOOR?

WELL A MONTH WENT BY AFTER GOING HOME ONLY 4 DAYS AFTER MAJOR SPINAL SURGERY AND HAD FOLLOW UP WITH SURGEON AND THE PAIN HAD WORSENED IF POSSIBLE AND THE SWELLING WAS STILL AS BAD AS THE DAY I CAME OUT OF SURGERY IF NOT WORSE AMONG THE OTHER SYMPTOMS FROM COLOR CHANGES TO HOT SPOTS ON MOST OF MY BODY BUT THE WORST PAIN HOWEVER WAS IN MY LEFT CHEST WALL AND ABDOMINAL AREAS AN DESCRIBED AS A THROBBING BURNING AND STABBING PAIN BEYOND BELIEF? THE SURGEON STILL INSISTED THIS WAS FROM THE IRRITATION FROM SURGERY AND NOT ANYTHING ELSE AND WAS GIVING ME HYDROCODONE AND NEURONTIN FOR PAIN BUT IT WASN’T HELPING AT ALL IN ANY WAY WITH PAIN HONESTLY. THIS LED TO HIM SUGGESTING MAYBE I WAS LAZY AND NOT WALKING ENOUGH TO BRING THE SWELLING DOWN AS WELL WHICH MADE ME MAD AS THE PAIN WAS SO HORRIBLE I COULDN’T HARDLY STAND UP NOT TO MENTION WALK? SO I RETURNED HOME AND FORCED MYSELF TO WALK MORE AND MORE EVEN THROUGH ANGER TO PROVE A POINT AND THIS ONLY MADE PAIN WORSE AND SWELLING DIDN’T IMPROVE EITHER AT THIS TIME AT ALL? HE OF COURSE DIDN’T RESCHEDULE ANOTHER FOLLOW UP AFTER THIS VISIT AS ONE WOULD EXPECT FOR MAJOR SPINAL SURGERY, INSTEAD  HE PASSED THE BUCK SO TO SPEAK AND SENT ME BACK TO THE NEUROLOGIST I HAD SEEN BEFORE THEY FOUND THE BACK PROBLEM TO BEGIN WITH FOR MORE TESTING FOR OTHER CAUSES OF MY SO CALLED UNEXPLAINED PAIN.

WELL I WENT ON TO THE NEUROLOGIST AS SUGGESTED AND HE ADMITTED ME TO HOSPITAL TO DO ANOTHER BUNCH OF TEST MOST OF WHICH I HAD ALREADY HAD DONE IN THE PAST TO RULE OUT OTHER CAUSES FROM MS TO ALS AND OTHER DISEASES ALL OF WHICH OF COURSE WERE NEGATIVE. THERE SEEMED TO BE NO CAUSE FOR MY PAIN THEY SAID BUT I SURE FELT IT INDEED AND KNEW IT WASN’T IN MY MIND FOR SURE. THEN I WAS SENT HOME AFTER A WEEK IN HOSPITAL ON 1000MG OF PREDNISONE A DAY FOR 5 DAYS WITHOUT A TAPER WHICH ABOUT KILLED ME IN ITSELF AS THE STEROID DOSAGE HAD REALLY MADE MY ANXIETY GO THROUGH THE ROOF TO BEGIN WITH IN HOSPITAL AND COMING OFF IT WITHOUT TAPER ONLY MADE ANXIETY AND THE PAIN WORSE. ALL OF THIS WAS FOR NOTHING IT SEEMED AS NO ONE COULD FIND AN ANSWER FOR THE REASON I WAS HURTING NOR WOULD THEY ADMIT IT BUT THE SURGEON WANTED ME TO START REHAB AT THIS POINT HE SAID, BUT WHEN I WENT TO THE APPOINTMENT TO THE REHAB CENTER HE HAD NEVER RELEASED ME FOR REHAB AND THEY WOULDN’T TOUCH ME DUE TO THIS? THIS OF COURSE MADE ME ANGRY AND STARTED A LOT OF CALLING TO HIS OFFICE INDEED MOST WITHOUT RESPONSES!

WE THEN CONTINUALLY CALLED THE SURGEON WITHOUT RESPONSE FROM HIM AT ALL EXCEPT HIS OFFICE DESK CLERK CALLING TO SAY HE SAID THIS OR THAT BUT NO ATTEMPT AT HELPING ME OR ANOTHER APPT WHAT SO EVER? THIS MADE US VERY ANGRY OF COURSE ALL THE WHILE I WAS SUFFERING AND HAD BECOME TO A POINT OF LIVING MY LIFE IN A HOSPITAL BED AS I COULDN’T PULL UP FROM OUR REGULAR BED AS IT WAS TO LOW? I WAS ALSO IN WHEELCHAIR AS COULDN’T WALK DUE TO PAIN AND SHAKING LEGS AND REFLEXES WERE OVER ACTIVE AS SHOWN BY MANY MEDICAL EXAMINATIONS BUT THE REASON WASN’T KNOWN BY ANYONE IT SEEMED. THIS WENT ON FOR SEVERAL MONTHS TO ALMOST A YEAR DURING WHICH TIME I SEEN SEVERAL OTHER DR’S MAINLY NEUROLOGIST FROM WAKE FOREST TO DUKE MEDICAL CENTER. THE DEPRESSION AND ANXIETY HAD INCREASED AS WELL AS THE PAIN TO A POINT I WAS HAVING PANIC ATTACKS SEVERAL TIMES A DAY HONESTLY AND ENDED IN SEVERAL TRIPS TO ER’S FOR FEAR OF HEART ATTACKS AND OTHER ISSUES ALL OF WHICH SHOWED NOTHING OF COURSE AND THEIR SOLUTION WAS GIVE ME A SHOT FOR PAIN AND SEND ME HOME WHICH NEVER HELPED WITH PAIN OR GAVE ME ANY ANSWERS FOR SURE. THEN CAME TO RECOMMENDED TRIPS TO THE PSYCHOLOGIST AND PSYCHIATRIST AS MOST OF US HAVE HAD MAKING ONE FEEL THEY THOUGHT OF COURSE ALL THE PAIN WAS IN YOUR HEAD AND THAT YOU WERE GOING CRAZY BUT I KNEW THE PAIN WAS THERE AND NO ONE COULD TELL ME OTHERWISE! THIS WAS BECOMING THE WORST NIGHTMARE I HAVE EVER LIVED HONESTLY AND IT CONTINUED ON FOR SEVERAL MONTHS LIKE THIS WITH NO ANSWERS FROM ANYONE AND NOT MANY DR’S WILLING TO EVEN SEE ME AS A RESULT OF NOT BEING RELEASED BY SURGEON EVEN THOUGH I HAD CALLED AND INSISTED ON THIS ON SEVERAL OCCASIONS WITH NO RESPONSE AT ALL? WE DID FINALLY GET HIM THROUGH A THREATENING LETTER TO RESCHEDULE ME FOR ANOTHER APPOINTMENT NEARLY A YEAR AFTER THE SURGERY HOWEVER AND HE DID MORE MRI’S AND JUST TOLD ME THERE WAS NOTHING HE COULD SEE FOR THE CAUSE OF PAIN AND THAT HE DID HIS JOB RIGHT WHICH WAS TO DECOMPRESS MY SPINAL CORD? NO OFFER FOR HELP OR IDEAS TO HELP ME JUST A VISIT TO SAY HE DIDN’T SEE THE CAUSE AND GOODBYE WAS ALL THERE WAS?

FINALLY MY AUNT WHOM IS A NURSE GOT ME APPT WITH ANOTHER NEUROSURGEON WHO WOULD SEE ME EVEN THOUGH THE ORIGINAL SURGEON HAD NEVER RELEASED ME. I  HAD TRIED DOING THIS MYSELF ON SEVERAL OCCASION BUT SEEMS NO OTHER SURGEON WOULD SEE ME AS LONG AS THE ORIGINAL SURGEON HASN’T RELEASED YOU? I HAD SEVERAL OTHER MRI’S THROUGH THIS PERIOD OF TIME AND SHOWED NO REAL PROBLEMS THEY COULD SEE. HOWEVER THIS NEW NERUOSURGEON AT LEAST DID SAY I NEEDED TO BE IN A PAIN MANAGEMENT CENTER FOR TREATMENT. HE HAD ME IN A PAIN CLINIC WITHIN 2 WEEKS AND THOUGHT ONCE AGAIN MAYBE THIS WOULD HELP AND I COULD GET ON WITH LIFE WITH SOME PAIN CONTROL? THEY FIRST TRIED SEVERAL MEDICATIONS ALL WITHOUT SUCCESS AND THEN CAME THE SCS TRIALS NEITHER OF WHICH WORKED AND THE SURGICAL INTERVENTION DURING THE SECOND TRIAL ONLY INCREASED THE PAIN AND CAUSED SPREADING. AT THIS TIME IS WHEN THE PAIN SPECIALIST HAD RECOMMENDED TO MY WIFE AT THE TIME THAT I BE PUT IN A HOME AS HE DX ME WITH SYMPATHETIC MEDIATED PAIN AND SAID I WOULD NEVER BE THE SAME AGAIN AND TAKING CARE OF ME WOULD BE IMPOSSIBLE FOR HER TO DO? LUCKILY AT THE TIME SHE DIDN’T AGREE AND WE CONTINUED TO SEARCH FOR HELP THROUGH THE INTERNET.

THE INTERNET SEARCH KEPT LEADING US TO THIS CONDITION CALLED RSD AND CRPS BUT WE DIDN’T KNOW WHAT IT WAS OF COURSE BUT DID FIND SEVERAL ONLINE WHOM HAD IT AND HAD BEEN DISCUSSING IT ONLINE AS WELL. THROUGH THIS WE FOUND TWO DR’S WHOM WERE CONTINUALLY MENTIONED AND WERE NOT GIVEN ANYTHING BUT PRAISE IN ALL ON THE FORUM POSTS WE READ SO WE EMAILED BOTH DR’S AFTER FINDING THEM ONLINE. ONE OF THEM WAS A DR STANTON HICKS AND THE OTHER WAS DR., HOOSHANG HOOSHMAND IN FL. I SAID A PRAYER CONCERNING THIS PAIN AND ASKED THE LORD TO PLEASE HELP AS I COULDN’T CONTINUE TO LIVE IN THIS SHAPE. THE FOLLOWING DAY AFTER WE SENT THE EMAILS DR. HOOSHMAND’S OFFICE CALLED ME CONCERNING THE EMAIL AND SET UP A PHONE CONFERENCE WITH HIM PERSONALLY FOR ME WITHIN A WEEK. DURING THE TIME BETWEEN THAT CALL AND THE PHONE CONFERENCE I MADE A LIST OF ALL THINGS I HAD BEEN THROUGH WHAT MY SYMPTOMS WERE AND WHEN THEY STARTED AND MEDICATION I HAD BEEN ON AS WELL AS THEY ASKED ME TO DO FOR REFERENCE FOR HIM AND ME DURING THE CALL. I FAXED A COPY OF ALL THIS TO HIM BEFORE THE PHONE CONFERENCE. THEN CAME THE PHONE CONFERENCE WITH HIM AND SUPRISINGLY IT WAS ACTUALLY HIM AND HE WAS SUPER NICE ON THE PHONE AND HAD A COPY OF ALL WE HAD TYPED OUT IN FRONT OF HIM AS WELL. HE SAID HE THOUGHT HE COULD HELP ME AND WANTED TO SEE ME WITHIN A MONTH? WELL THIS WAS A CHALLNEGE FOR US AS WE LIVED IN NC AND A TRIP TO FL WAS 13HR DRIVE OF WHICH I DIDN’T KNOW IF I COULD HANDLE OR NOT? THERE WAS ALSO THE FACTOR OF THE COST OF TRAVELING EXPENSES AND THE FACT HE DIDN’T CONTRACT WITH ANY INSURANCE COMPANIES OF COURSE BUT I SOLD MY TRUCK FOR MONIES TO GET THERE AND PAY THE FIRST UP FRONT COST AND MADE THE TRIP. WELL I SAID THEN THE LORD ANSWERED MY PRAYERS AND INTENDED FOR ME TO GO TO FL TO SEE THIS DR INDEED AS I FELT IT IN MY HEART FOR SURE! SO OFF WE WENT TRAVELING TO FL FOR THE FIRST OF WHAT WOULD BE MANY TRIPS IN THE FUTURE TO DR. HOOSHMAND INDEED!  THE FIRST DAY WAS FILLED WITH ANSWERING QUESTIONS AND VIRTUALLY GIVING MY LIFE HISTORY TO HIM FROM INJURIES I HAD FROM A YOUNG AGE UNTIL THE BACK SURGERY THAT STARTED THIS PAIN! HE ALSO DID A THERMOGRAPHIC IMAGE OF MY BODY AFTER SETTING WITH NO CLOTHES ON IN A ROOM AT 68 DEGREES FOR 30 MINUTES WHICH WASN’T VERY PLEASANT INDEED. HOWEVER THIS IMAGE SHOWED SOMETHING TO PROVE VERY IMPORTANT AND THAT WAS WHERE THE RSD WAS ACTUALLY EFFECTING ME AND THE TEMP DIFFERENCES IN AREAS OF MY BODY AND THEY CORRELATED WELL WITH ALL THE PLACES I WAS HAVING MY WORST PAIN “SURPRISE” I DIDN’T THINK SO AND NEITHER DID THEY. WELL DURING MY FRIST WEEK OF TREATMENT AT HIS CLINIC HE HAD ME OUT OF WHEEL CHAIR AND WALKING ONCE AGAIN AND I WAS SO HAPPY FOR SURE AND HAD POSITIVE DX OF RSD/CRPS SO NOW KNEW WHAT WAS WRONG WITH ME AND THE TREATMENTS HE WAS OFFERING SEEMED TO BE WORKING FOR ME ALONG WITH THE MEDICATIONS HE STARTED ME ON AS WELL AND ON THE WAY HOME WE ACTUALLY STOPPED AT A DRIVE THROUGH ZOO AND I GOT OUT FOR THE FIRST TIME IN ALMOST 2YRS TO WALK IN PUBLIC.

AFTER THIS FIRST TREATMENT I STARTED WORKING ON GETTING MUSCLE BUILT BACK UP IN MY BODY AS PAIN WAS UNDER SOME CONTROL BUT HAD TO MAKE TRIPS TO FL EVERY THREE MONTHS FOR RE-TREATMENT WITH BLOCKS AND CHECKUP FOR A WEEK AT A TIME. THIS WAS HARD FINANCIALLY AND EVENTUALLY SENT US INTO BANKRUPTCY BUT I WAS GETTING MORE AND MORE PAIN CONTROL AS I WENT EACH TIME SO WE CONTINUED GOING FOR SURE AND WHEN MONEY DIDN’T SEEM TO BE THERE FOR NEXT VISIT THE LORD PROVIDED IN SOME WAY THE MONIES NEEDED FOR TREATMENT AND TRIPS TO SEE DR. HOOSHMAND AND HASHMI IN FL. I CONTINUED THESE TRIP TO FL AND ACTUALLY RETURNED TO WORK AT MY JOB FOR THE STATE OF NC WORKING ON AN AGRICULTURE RESEARCH STATION IN MAY OF 2002 AFTER ONLY A COUPLE OF VISITS TO DR. HOOSMANDS AND I WAS FEELING WELL ENOUGH I THOUGHT TO GO BACK TO WORK. OF COURSE THIS PROVED TO BE ANOTHER CHALLENGE AS DR. HOOSHMAND HAS PUT ME UNDER RESTRICTIONS AND THEY DIDN’T WANT ME TO RETURN TO WORK? I HAD BEEN THROUGH SO MUCH AND WORKED SO HARD AND NOW THE PLACE I HAD WORKED FOR 14YRS AND LOVED DIDN’T EVEN WANT ME BACK WHICH WAS A BIG BLOW TO ME BUT I CONTINUED TO FIGHT FOR MY RIGHT TO RETURN TO WORK. WELL FINALLY THEY ALLOWED ME OT RETURN WITH THE RESTRICTIONS. HOWEVER THIS PROVED OVER TIME TO HAVE BEEN A MISTAKE ON MY PART I DIDN’T WANT TO ADMIT AS MOST OF US DON’T THAT I COULD NO LONGER DO THE THINGS I USED TO DO ALL THE TIME AND TOOK FOR GRANTED! THE FIRST 10 MONTHS OR SO WERE GREAT WITH LESS PAIN AND GETTING BACK INTO THE SWING OF WORKING MY JOB BUT AFTER THIS PERIOD THE PAIN STARTED TO INCREASE ONCE AGAIN SLOWLY AND I DIDN’T EVEN TELL ANYONE AS I DIDN’T WANT ANYONE TO KNOW AND ALSO DIDN’T AS I MENTIONED WANT TO ADMIT I COULDN’T DO MY JOB AS I USED TO DO IT BEFORE ALL THIS HAPPENED? DURING THIS TIME I WON MY FIRST SSD CASE AND WAS RECOMMENDED TO DO A CLOSED END SETTLEMENT BY MY LAWYER AT THE TIME IF I THOUGHT I WOULD BE ABLE TO CONTINUE WORK FOR OVER 2 YRS SO I AGREED AND CONTINUED TO WORK EVEN THOUGH THE PAIN INCREASED MORE AND MORE UNTIL AN INCIDENT THAT HAPPENED TO ME WHILE NOT AT WORK.

THIS INCIDENT WAS I FELL FISHING WITH MY SON IN APRIL OF 2004 HITTING MY BACK HARD ON A ROCK WHICH INCREASED MY PAIN TO A LEVEL I COULD NO LONGER WORK ONCE AGAIN AFTER 1YEAR AND 11 MONTHS I HAD BEEN BACK TO WORK. AS MENTION THIS WAS LATER PROVEN TO BE SOMEWHAT OF A MISTAKE ANYWAY AS PAIN HAD INCREASED STEADILY OVER THIS PERIOD OF TIME AND TRIPS TO FL BECAME FURTHER AND FURTHER APART DUE TO FINACIAL ISSUES. THIS LED TO WORSENING OF PAIN, SPREADING OF THE RSD AND OVERALL ENDING OF MY CAREER AT WORK. I CONTINUE TO SEE DR. HOOSHMAND UNTIL NOV OF 2OO4 AT WHICH TIME HE WAS FIXING TO RETIRE AND DR. HASHMI HAD LEFT HIM TO OPEN HIS OWN PRACTICE AS WELL. I STARTED ONCE AGAIN TO SEARCH FOR A PAIN DR CLOSER TO HOME TO MANAGE THIS MONSTER WITHOUT SUCCESS ONCE AGAIN AS NO PAIN SPECIALIST I SEEN WAS INTERESTED IN DOING THE BLOCKS THE WAY DR. HOOSHMAND HAD BEEN DOING OR PRESCRIBE CERTAIN MEDICATIONS THAT I WAS ON EITHER FOR THAT MATTER AND THE SAME FRUSTRATIONS I HAD FOUND IN THE PAST BEFORE FINDING DR. HOOSHMAND WERE ONCE AGAIN SHOWING TO BE MOST STRESSFUL AND DISAPPOINTING WITH NO HELP AT ALL FOR THE MANAGEMENT OF MY PAIN. THEY WOULD JUST SAY WE WANT DO THE BLOCKS THE WAY HE DOES AS WE DON’T DO THEM THAT WAY AND WE WANT PRESCRIBE THAT MEDICATION FOR SOME REASON OR THE OTHER EVEN THOUGH I HAD BEEN THROUGH ALL THE MEDS THEY WERE OFFERING IN THE PAST WITH NO HELP WITH PAIN AND THE ONES I WAS TAKING HAD BEEN HELPING AT LEAST SOMEWHAT WITH MY PAIN? THEY WERE CLOSE MINDED INDEED AND I WENT TO SEVERAL DR’S ONLY TO GET DISGUSTED SEVERAL TIMES AS PAIN CONTINUED TO INCREASE AND SPREAD THROUGHOUT MY BODY. FINALLY I DECIDED I HAD TO RETURN TO FL ONCE AGAIN TO SEE DR. HASHMI AT HIS NEW PRACTICE IF I HAD ANY HOPES OF GETTING SOME RELIEF, SO AGAIN IN SEPTEMBER OF 2005 I RETURNED TO FL FOR TREATMENTS WHICH DID HELP AGAIN WITH PAIN LEVELS BUT IT HAD GOTTEN TO A POINT THAT THESE TREATMENTS DIDN’T EVEN WORK AS WELL AS THEY HAD IN THE PAST. I CONTINUED TO SEE HIM AS I COULD AFFORD TO MAKE TRIPS BUT NOT NEAR AS OFTEN AS I NEEDED TO KEEP PAIN UNDER ANY REAL CONTROL SO IT CONTINUED TO SPREAD DUE TO THIS LACK OF TREATMENTS! NEW MRI’S SHOWED FURTHER DETERIORATION IN MY SPINE ALONG WITH ARTHRITIS AS WELL DURING THIS TIME AS THE RSD AND MY LACK OF BEING ABLE TO GET UP AND MOVE AS MUCH AS I SHOULD HAD TAKEN ITS TOLL ON MY BODY FOR SURE. THE LAST MRI I HAD IN 2006 SHOWED I HAD 6 MORE RUPTURED DISCS 4 IN THORACIC AREA AND THE OTHER TWO IN LUMBAR AREA OF MY BACK ALONG WITH MULTIPLE LEVELS WITH ARTHRITIS AND SCOLIOSIS OF THORACIC SPINE AS WELL TO THE SIDE OF THE INCISION MADE FOR THE SURGERY.  OF COURSE NO SURGERY WAS RECOMMENDED AS A RESULT OF THE RSD AND FEAR OD MAKING IT WORSE EVEN THOUGH BY THIS TIME I HAD BEEN DX AS FULL BODY RSD INVOLVEMENT ANYWAY? THEN I WAS DX WITH PITUITARY ISSUES AS RESULT OF BLOOD WORK DR. HASHMI DONE THAT SHOWED LOW HORMONE LEVELS IN MORE THAN ONE HORMONE. I HAD A BRAIN MRI AND THAT SHOWED NOTHING SIGNIFICANT WRONG WITH MY PITUITARY GLAND BUT IT WASN’T WORKING NONE THE LESS. THIS WAS CAUSING ME TO HAVE LOW CORTISOL, TESTOSTERONE AS WELL AS OTHER HORMONE LEVELS IN MY BODY AND NO EVERY AT ALL ON TOP OF THE PAIN. I WAS IMMEDIATELY STARTED ON A LOW DOSE OF DEXAMETHASONE TO REPLACE CORTISOL AND ANDROGEL TO REPLACE THE TESTOSTERONE LEVELS TO MORE NORMAL LEVELS AND DIAGNOSED WITH ADRENAL INSUFFICIENCY AS WELL AS HYPOGONADISM AS WELL DUE TO THIS PROBLEM. THEN LATER ON IN THE YEAR OF 2006 I WAS DX BY MY GP WITH THE ONSET OF DIABETES AS WELL ALONG WITH ALL THE OTHER PROBLEMS SO IT SEEMED MY BODY WAS FALLING DOWN AROUND ME A LITTLE AT A TIME? I MADE ONE MORE TRIP TO FL AFTER THIS AS I ALSO DUE TO BECOMING DIABETIC I COULD NO LONGER HAVE THE BLOCKS THAT HAD HELPED ME FOR YEARS DUE TO THE GLUCOSTEROIDS USED IN THEM SO THAT OPTION WAS LEFT OUT AT THIS POINT. SO ONCE AGAIN I STARTED SEARCHING FOR DR IN NC LOCALLY TO GET A PAIN PUMP EVALUATION AS THIS IS WHAT DR. HASHMI HAS THOUGHT WAS MY NEXT COURSE OF ACTION DUE TO NOT BEING ABLE TO HAVE THE BLOCKS ANYMORE AND HAVING SUCH ISSUES WITH PAIN. THAT WAS OVER TWO YEARS AGO NOW AND STILL DON’T HAVE A PAIN PUMP THOUGH I HAVE FOUND A GOOD PAIN DR IN NC FINALLY AFTER 9YRS OF ON AND OFF SEARCHING. HE IS IN WINSTON SALEM AND ABOUT A 2 HOUR DRIVE AWAY FROM MY HOME BUT CLOSER THAN FL FOR SURE. WE LOOKED AT THE PAIN PUMP AS OPTION AFTER TRYING A COUPLE OF OTHER MEDICATIONS FIRST BUT MEDICARE AND INSURANCE COMPANY DENIED TO PAY FOR THE PUMP AS RESULT OF COMPUTER GENERATED DEPRESSION STUDY THAT SHOWED LOW LEVELS OF DEPRESSION? WHO WOULDN‘T HAVE DEPRESSION AFTER LIVING IN CONSTANT PAIN LIKE THIS FOR 9YRS?? ANYWAY I AM PRESENTLY LIVING DAILY WITH PAIN LEVELS OF 7-8 AS NORMAL AND 10+ ON BAD DAYS WHICH AS MOST OF YOU PROBABLY KNOW IS NO FUN WHAT SO EVER! WE ARE WORKING ON MEDS ONCE AGAIN TRYING TO FIND SOLUTION WITH SOMETHING ELSE AND USING DIFFERENT COMBINATION BUT EACH TIME WE SWITCHED SO FAR IT HAS ENDED IN WORSE PAIN RATHER THAN BETTER PAIN. I AM SEEING A PSYCHOLOGIST AS WELL AS SUGGESTED TO TRY AND GET THE PAIN PUMP APPROVED EVENTUALLY OR SOMETHING THAT WILL HELP LESSON MY PAIN SO I CAN FUNCTION ON A MORE NORMAL BASIS WHICH ISN’T THE CASE NOW FOR SURE. MEDICARE HAS DENIED THE PUMP BASED ON PSYCH EXAM THAT SHOWS LOW LEVELS OF DPERESSION SO THAT IS ON BACK BURNER NOW AS WELL? I LIVE DAILY WITH PAIN LEVELS OF 8 OR HIGHER AS WELL NOW. PAIN DR IS WORKING WITH ME HOPING TO GET ME INTO A CLINICAL TRIAL FOR INFUSION PUMPS SO I CAN GET THE PUMP AND BYPASS MEDICARE ALL TOGETHER BUT THAT IS EVEN ON HOLD PENDING FDA APPROVAL FOR ONE OF THE PUMPS TO BE USED IN THE STUDY SO I HAVE NO WAY OF KNOWING WHEN AND IF THIS WILL EVER HAPPEN? I CONTINUE TO HAVE ALL THE OTHER HEALTH ISSUES FROM ADRENAL INSUFFICIENCY, HIGH BP, SWELLING, COLOR CHANGES, COMPLETELY DESTROYED SPINAL COLUMN WITH ONLY 1 DISC LEFT IN MY BACK NOT RUPTURED WITH A LOT OF NERVE COMPRESSION AND FLATTENING OF SPINAL CORD AT 2 LEVELS TO ADD TO THE FULL BODY RSD AS WELL AS OTHER RELATED HEALTH ISSUES BUT WITH THE HELP OF THE LORD MAKE IT THROUGH ONE DAY AT A TIME. I KNOW THIS HAS BEEN LONG AND DRAWN OUT BUT TO TRULY TELL THE HORROR OF ALL THIS I FELT I NEEDED TO GO INTO SOME DETAIL CONCERNING MY HISTORY WITH THIS ILLNESS. TRUST ME IT COULD HAVE BEEN A FULL BOOK IF I GOT DOWN AND INTO EVERY DR AND PROCEDURE I HAVE HAD OVER THE LAST 10YRS FOR SURE AS MOST OF US WITH RSD PROBABLY COULD DO AS WELL. THE PROGRESSION IN PAIN MANAGEMENT IS PROGRESSING IN THE LAST NINE YEARS BUT HAS A LONG WAY TO GO AND THE ISSUE IS THAT THE MEDICAL FIELD IS BEHIND THE RESEARCH BEING DONE AS MOST DON’T EVEN KNOW ABOUT THE MOST RECENT TREATMENT OPTIONS EVEN OUT THERE SADLY AS THEY DON’T KEEP UP CLOSE ENOUGH TO THE MATERIAL BEING RELEASED! SO WE HAVE A LONG WAY TO GO IN LOOKING FOR PROPER TREATMENTS AND A POSSIBLE CURE FOR THIS HORRIBLE PAIN CONDITION FOR SURE.

IN CONCLUSION I HOPE THIS STORY WILL HELP SOMEONE IN SOME WAY KNOW THAT THEY ARE NOT ALONE IN THIS BUT ALSO MAYBE NOT MAKE SOME OF THE MISTAKES THAT WERE MADE ALONG THE WAY IN MY HISTORY AND DEMAND A QUICKER AND BETTER DIAGNOSIS FROM THE DR’S AS IT IS YOUR BODY AND THEY WORK FOR YOU AND NOT THE OTHER WAY AROUND AS A LOT OF THEM THINK INDEED SO SADLY. WE CAN BE STERN WITHOUT BEING JERKS AND EDUCATED WITHOUT ABOUT OUR CONDITION WITHOUT BEING A DR AS WELL AS WE AREN’T STUPID EITHER AS A LOT OF DR’S THINK WE ARE AS WELL IN MY EXPERIENCES. MY PRAYERS GO OUT TO ALL WHOM READ THIS AND  I HOPE THAT THEY GET A QUICKER DIAGNOSIS AND PROPER TREATMENTS SOONER FOR BETTER CHANCES AT REMISSION THAN MOST OF US HAD JUST A FEW SHORT YEARS AGO. THIS IS MY STORY OF THE LAST 10 YEARS OF MY LIFE WITH THIS CONDITION AND THIS IS JUST THE PAIN ASPECT AND NOT THE ISSUES IT HAS CAUSE WITH FAMILY AND OTHER ASPECTS OF MY LIFE AS I AM NO LONGER MARRIED AS WIFE LEFT ME AFTER 7YRS INTO THIS DISEASE AND KIDS LIVE WITH ME FOR THE MOST PART AND THEY NOT ONLY HAVE BEEN DAMAGED IN WAY AND STRIPPED OF A NORMAL CHILDHOOD IN WAYS BUT ALSO IT HAS MADE THEM WORRY ABOUT ME AT A TIME THEY SHOULD HAVE BEEN ENJOYING LIFE TO THE FULLEST AS WELL. THIS IS MY BIGGEST REGRET CONCERNING THIS CONDITION ACTUALLY IS WHAT IT HAS TAKEN FROM ME AND NOT GIVEN ME HONESTLY. I HOPE EVERYONE HAS SOME SORT OF SUPPORT LINE WITH THIS CONDITION THAT IS STRONG AND SECURE AS IT TAKES IT DAILY HONESTLY AND TOUGH TO HANDLE ON YOUR OWN INDEED AND MANY DON’T KNOW OR UNDERSTAND THIS AT ALL AND WITHOUT THEM LIVING WITH THE PAIN I DON’T KNOW IF THEY CAN UNDERSTAND IT TOTALLY HONESTLY.

Tammy

My Name is Tammy L Nelson and have major damage throughout legs, back and arms but also have CRPS throughout. I will be 36 in April, I am happily married and have a handsome son that is 9 years old and a daughter (no longer lives at home). I spend my days in 24/7 pain nonstop, spasms, keep legs elevated due to circulation problems, limit myself to doing things around the house some I cant do at all and then what I do do causes so much pain I sweat so bad my shirt is soaked, keep things to a low volume so much more. I struggle to do things others take for granted: to sit, lay down and get back up, to stand, to just walk (which I use crutches or use wall and have pain with every step), to bathe, to wear clothing/shoes, to hug and so many other things. 

I have lived with pain since a car accident when I was 14 years old, as years went on I had more pain and the damage became more severe. I was told when I saw first surgeon after accident that I'd end up in wheelchair in my twenties. The pain in my back was so severe at times, that I would drop and then in time knees began to give out due to damage in there as well. I went through many therapy appointments, doctor appointments, which they tried so many different things to help me, in the end for nothing to work. I had to learn that this is how it was going to be and learn to live with it all. When I had my daughter at 18, I was told due to all the damage, it was not in my best interest to have any more children, shouldn't of had even her probably, it had caused more damage and would cause even more damage or worse. Having no choice, I learned I had to work through the pain, limit what would cause more problems. However no matter what i did everything progressed. My back was so severe in 1999, pain was so bad I could barely take a step and almost didn't walk down the isle at my own wedding and didn't want to even go to reception because the pain was that severe but went out of respect.

My husband aware of how bad I was getting always told me not to work, so that I wouldn't be in so much pain and be able to rest more. I never listened. However we then decided to have a child together, with me agreeing to stay at home and raise him. We both knew it was a risk but it was mine to take, although others weren't happy with the risk. In 2001 I gave birth to my son and believe it or not I came out of it ok, yes caused more back pain etc, but didn't fully knock me down like they had thought. We were so happy, I would be able to still do parks, field trips, and so on. I wasn't like most mothers and wasn't easy to hold him, carry him, play certain ways with him, I had many limits and found ways to work around them. However pain in body was and had been to much for already several years, in which I cried many times when no one was looking, my son was about to start school it was time for me to get fixed what they could before they couldn't. I was falling much more, barely able to walk even several blocks, a lot of inflammation and more.

It was July 2004, I went to doctor whom referred me to surgeon. In 1999, they had stated I needed a fusion in several areas and much cleaning was needed also, but was scared and never went back. Surgeon had x-rays etc on both back and knees. The damage found was bad, he couldn't believe what he saw, said I shouldn't of been able to walk and should be passing out from the pain. My kneecaps and back needed surgery as soon as possible, however knees would need to be fixed first, then we would do back, however couldn't fix all of it I was told. I underwent surgery in both knees with a more severe surgery in the right knee. From that moment my life had changed for the worst and nothing was going to be the same again. The knees never healed properly and my legs were never the same, pain was constantly unbearable, muscles had atrophy which made no sense due to all the therapy I was doing, there was discoloration if bent, stood or tried to walk on them, a lot of swelling. A simple touch would make tears stream down my face.I had to be wheel chaired everywhere, with crutches i could only bear so much on leg so very limited. My life was on hold and my immediate family, However bills had to get paid and mostly home alone with my son then 3 and things were needed. I would have to get to steps for upstairs to get to butt then get to floor to scoot to kitchen to make our lunches and then I cried every step to make it to bathroom and screamed to lower down, to clean what I could was unbearable but couldn't handle having to just sit there. I couldn't carrying anything so everything was put by me in the morning. From then on there was no more walks to park for my son and in time he wouldn't remember me ever walking. I ended up being sent to neurologist, whom did many test, in the end to tell me he had bad news and diagnosed me with CRPS. He began to start to treat it, felt he could get me off crutches, get pain somewhat under control and for me to get back some of my life.

Now almost 6 years later, still crutches, need wheelchair if to far however back has gotten so bad cant handle wheelchair so I go through pain to take each step. After trying one medication after another, still no control on the pain and my disease has progressed and has traveled to most areas. I am limited to mostly my home, when I do get out its usually doctor appointments and surgeries. Now after many surgeries, doctors, procedures and facing another one and likely more surgeries, my body continues to get worse. There is no cure, so I spend my days telling and being told wishes of less painful days, do whatever I can to keep my mind busy, do what little I can and find something good in it. I try not to think of the future because to be honest it scares me.

My son, my husbands and my life isn't the same, we do not do theaters, parks, long drives. I cannot make it to my sons productions at school and the ones I have we leave early because my level of pain gets to high. We can't plan things, we do most things last minute if i get the courage to deal with the pain to do it. We are mostly home and don't get to get together with others much everything is usually at places or their homes, which most times I am unable to do. Coming to visit at ours is far and in between and many we only see if I go through the pain to get to them. We have lost family and friends, We have learned things most don't. We don't take each day for granted, we know how special each day is. My family suffers with me, with my not being able to do things, they can't. They see what I go through everyday and they know they can't fix it. I appreciate my husband and my son and love them very much. They cheer me through the days, help me when down, by cheering me up. They are who gets me through this disease as well as all my true friends and those I have met through this disease. May someday we find a cure, may we all have less painful days.

Amy

December 27, 2007 will be a day I will never forget. Not only is it my oldest sons birthday, it is also that day that I was trudging along working on my Robotic Welder, felt a pop, a burning sensation all the way down my arm and couldn't move it. Off to the ER I went. That day has changed my life so many ways, in ways I will never forget.

Since that day I have been thru 4 Dr's, PT, OT and no one could seem to find the problem. I struggled almost daily, to even be able to use my arm. Not being able to reach, raise or lift anything. Some said it was Tendonitis, some said Frozen Shoulder, but yet.. the burning, the stinging, just would NOT go away.

Finally, after a year of struggling with this, the Dr I had here told me he was going to send me to a shoulder specialist to see if there was anything she could help me to do. At this time as well, WC was fighting me, I couldn't get help from anyone. I had to end up using my own insurance, which was fine if I could have gotten the help I needed.

In February of '08 I was finally sent to the specialist who in turn said, she was not sure what was going on, but wanted to pass me to a PM dr.. Which was fine with me. By Now i am crying, begging for someone to help me, just help me to keep this pain to a minimal and so she thought she did.. Off I went to the PM who I seen from March 08 to current. He started me on Neurontin, and I went on my Merry way. Hoping that this would help.. Mind you, This was the first time I had been on Medication since my accident. I truly thought I was dying.. I was up for trying anything now.. so the Neurontin was a welcomed thing.

I continued seeing my drs for the next year trying this med and that.. My Shoulder Spec.. not wanting to try surgery for fear of making anything worse, What i was getting now was this... I don't know what to do with you Amy, I really don't know. Over and over and over...

So on April 24th 1009 My 39th birthday.. They after trying so many things, finally gave me a diagnosis....CRPS. What a GREAT birthday gift.. one that I will get to keep FOREVER.. YAY!!! :(

At this point, they have tried to send me to and RSD DR.. an RSD PM and I couldnt see any of them... Why you ask? Because of Workmans Comp. They denied me everytime. So now, I am sitting and waiting for a hearing in April to see if I WC is going to start paying.. and allowing me to attend the dr that i truly need to see.

It has been one heck of a roller coaster ride for me, there are some days I can not make it out of my bed. There are some days I can not even think about, what this is not only doing to myself, to my family.. but my friends as well.. I guess I can say this... I am so thankful that many of my friends now reside on line.

The pain that we all endure is not something that any of us should have to go through. Its been one of the most trying things in my life to ever have felt. The deep shards of glass that strike thru my feet, my hands and my arm/shoulder and now into my neck, are the most horrendous feeling, feelings I have ever experienced. I hope that in time just like the rest of you. We can get our word out and spread to enough people to let them all know, What RSD is...and how to manage if not to get thru for good.

My Dr's have both told me that had I of gotten in to see them within the first 3-4 months of this happening, They probably would have been able to either put me into Remission, or helped me so that other parts of my body were not affected. However, just a recap.. What started out in my shoulder, has now totally taken over my complete arm and hand. Moved into my feet and legs, and now.. working on my neck.. in the most inconvenient way. Someday, maybe someday.. Someone will find us the cure!!! Here is to hoping.

So, as I sit here and share my story I want each and everyone of you to just remember.. Even tho this monster has a hold on us, and it can affect every part of our being.. It cant not take away our sense of self-- If you can put a smile on your face at least 1 time a day or even TRY to.. .you are doing a fantastic job. My heart goes out to all of you fellow RSD's. I am always here to lend and ear, or a should to cry, scream, on. You are all in my thoughts and prayers daily...

Gentle Hugs,
Amy

Kaylee

This disease called CRPS is the biggest monster that I have yet to face in my life.  I am a 16 year old girl who had everything going for me playing club soccer (goalie), going to school, hanging out with friends and family, going to church all the time, rarely seeing doctors, and many more things.  But, on May 16, 2008 all that I had ever known was ripped away from me.  That day was just like any other day for me, but when 6:00pm came around it was time for soccer practice little did I know that was my last club soccer practice for the rest of my life.  Soccer was the only thing that I knew, soccer was my passion, and what I wanted to do in life.

When I was playing soccer I didn't have to think about what my next step or move was going to be, it was all just natural, an instinct for me.  It all started when, a soccer ball was coming at me when I was standing in the goal, so I went to dive for the ball and that's when everything changed.  I heard a loud "pop" from my right knee, and was instantly in pain, but as I have done countless times I "sucked" it up and kept playing.  The next practice which was two days later I was still in pain, but was still going to practice and do what I loved and not let the physical pain stop me.  During the practice I was in a lot of pain but kept going.  My team and I then started to scrimmage another club team, then that's when one of the girls came in on me and slid straight into that same knee I had injured just two days ago.  After that hit, I was on the ground and could not move because of the debilitating pain.  I never would have thought that I would be in pain for  days, months, and years to come.  Those next few days I didn't do anything about it, but when I could no longer take the physical discomfort my dad took me to the president of my soccer club who is a physical therapist.  The physical therapist thought that I may of just bruised the bone or something so he sent me home, and asked that I come back two days later to start physical therapy.  When I came back those two days later my knee was very swollen, bruised, and yellow.  The physical therapists assistant took off my brace that I was wearing and saw my knee and her jaw dropped, I was scared because I hadn't seen it that day.  She immediately went and got the physical therapist, and he was in shock over it.  He then ordered a MRI, and set me up with one of his contacts who was an orthopedic surgeon, who also happened to be one of the top doctors in our state.  I could not get in to have an MRI for about two weeks, so until then I was going to physical therapy three times a week.  My physical therapist told me that I had to start using crutches because he did not want to further damage my knee.  I had the MRI, and it turned out that I had a torn meniscus and a strained ACL.  The orthopedic surgeon said that he wanted to try and rehab the knee to avoid having surgery.  Since the knee injuries, I was not able to straighten the knee at all no matter what I did.  This was very perplexing for both the physical therapist, the doctor, and I.  I continued with the PT, but I was not able to straighten the knee, and I was not making progress with the PT.  My orthopedic surgeon tried cortisone shots, drawing fluid out of the knee, an ice machine, and the last thing he tried was something called a Dynasplint.  That splint was so painful because every night I had to crank it so it would force my knee straighter and straighter every night.  But, it didn't work.  

Now, it was September of 2008 and I was still on crutches and not able to straighten my leg.  September 9 was a big day for me, my freshman day of high school!  No matter how much pain I was in I was not going to use crutches.  So, I walked around the huge campus my first day of high school.  I was in terrible pain, but was determined to get through the day. Although, I was wearing a brace that day in effort to try and make things a little easier.  As always after the first day of school you have a long list from teachers of all the school supplies that you need, so my mom took my sister and I to the store.  I got out of the car and entered the store, and then my mom all of a sudden called me and said, "Look at your knee!  What happened? Whats wrong?"  I had no idea what she was talking about so I looked down and my knee was the size of a basketball, there was redness spreading throughout my leg like wildfire, severe pain, and bruising running up and down the entire leg.  We immediately went home and called the doctor, and we were told to go to the emergency room as soon as possible.  When I was finally seen the doctors were shocked, and then started trace the outline of the redness with a sharpie because it was spreading so quickly, they gave me pain medication, and decided to admit me to the hospital.  It turned out that I had cellulitis in my knee so I was on antibiotics for a couple of days, and then I was seen by another orthopedic surgeon.  He decided that I need to have an arthroscopy on my knee, we then found out that my plica band was flipped up under my kneecap (which was preventing me from straightening my knee).  Then, the PT commenced, but the pain got out of hand, discolorations of my leg, and swelling.  I was questioned several times if I was hurting myself at night because the doctor just could not figure out what in the world was going on.  He then sent me out to a rheumatologist, which revealed nothing.  So, I was referred to the UCLA pediatric pain program. 

Two months later I got an appointment to see a doctor at the UCLA Pediatric Pain Program.  The doctor I saw there was amazing by far the most amazing doctor I have had to date.  He inspired me to get better, and he was the one who made the diagnosis of CRPS in the right leg.  I was put on medications, patches, and was told to come back the next month.  Months and months later I still was not better, and he was let go from the program because they had lost their funding.  I was devastated.  About a month later, I saw the head of the pain program there at UCLA and I didn't like her.  Unfortunately, I then left their pain program.  

It was now February of 2009.  I had not been able to urinate for two days.  It had never happened to me so I didn't think of it as a problem to tell one of my parents.  I then told my mom on the second day.  We went to urgent care and that's when I had to have a foley catheter put in, and said I had urinary retention.  I had it in until about the end of March, beginning of April.  One day, I woke up with severe stomach pain so I went to the emergency room, and from there was admitted to the hospital.  I was there for a week, and the doctors hadn't found anything so they discharged me.  The next day I returned to the emergency room because the pain was to severe and was vomiting.  So, I was admitted to the hospital again.  The doctors at the hospital were just amazing, they literally ran almost every test they could think of.  But, still they found nothing that was causing the stomach pain.  The doctors there did find an infection called VRE (Vancomycin Resistant Enterococcus), and I was put on isolation because it is a bad infection that can only respond to about two antibiotics.  I was put on Cubicin and Gentamicin (strong antibiotics) in order to kill the infection.  A week later, I was discharged from the hospital again, except this time on about 25 medications, and with a PICC line (basically an IV that goes straight to the superior vena cava) which I was giving myself antibiotics twice a day everyday for about a month.  When I was in the hospital the urinary retention ended up going away so that was amazing!  The stomach pain and vomiting went on for about another month and then went away.  

On the 4th of July 2009 I was not able to urinate again.  So, off we went to the emergency room and had another catheter put in.  The doctors drained over 1200cc from my bladder (almost 2 liters)! This time I went to a urologist for a follow up.  She decided to keep the catheter in for another month or two.  I then learned how to self-catheterize myself.  Which I still do to this day.  I had two tests called a cystoscopy and an uro-dynamics study to determine what was wrong with my bladder.  But, they were no help with diagnosing the problem.  The only thing that it showed was that my bladder is completely shut down.  To this day I am still not able to go to the bathroom without having to self-catheterize which has now become routine.  I have been having major problems now because I get very frequent infections because I am putting something foreign in my body 4 times a day.  The really hard part is that the doctors say that I only need a new catheter every two weeks, which we think is what is causing the infections. 

Now, I have full body CRPS, and physical therapy, medications, nerve blocks, therapy, and hypnotherapy do not work.  I was just approved to go to Cleveland, Ohio for the Pediatric Pain Rehabilitation Program!  I will be attending that as soon as possible. Hopefully, this will be the key to getting better, and hopefully being able to walk again, gain back bladder function, and get rid of the stomach pain, and vomiting that has recently just came back.  

I now know that even though I have to endure this pain everyday that it all happens for a reason!  I would not have been able to meet all the amazing people that I have!  I am so appreciative for them, and I feel that I have made life long friends! Without God, amazing RSD Angels, friends, and family I would not be able to get through this.  Because there is not many meetings and get togethers for us RSD Angels my friend Ailsa and I have taken the initiative to plan a CRPS Retreat!  I hope that we are able to inspire people with our stories, and to raise more awareness for this monstrous disease!  Since I have so many health problems I now have realized that my true calling in life is to become a doctor and to help other people in need!  I love God, my RSD Angels, friends, and family for supporting me through this!  I will get through this bump in the road!  

One last thing:  "Someday everything will all make perfect sense.  So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason!"

Margie B.
I have suffered with RSD for 18 months. Before that, I had no idea it existed. When I get asked about my hand, I try to give a short answer but no one knows what RSD is either and I wind up telling this long story about pain and nerve endings and pain and meds and pain. now I just say "I was attacked by a land shark" smile and walk away. I don't know what else to say and I don't want to talk about it when I try so hard to forget about it!

Suzanne
Hello. .. My name is Suzanne Stewart, and I joined this group because of the many many times that people would say to me "but you don't look sick!" I think that is great and I'm happy that I don't LOOK sick...but the fact of the matter is that I'm in pain a great deal of the time and only my Dr's see it and my family that lives in my house with me. They are my hero's and have stuck by me and loved me when I'm not as easy to love as I wish I was b/c I'm in pain and/or I'm tired from lack of sleep or low meds ..any of these can make us crabby, a little.

My story goes back to 2002, august 11th...we (hubby and i) were at Milford Memory Daze, a street art fair. We were sipping lemonade and walking around and had just dropped the girls off at a birthday party for one and the rec center for lifeguarding job ,the other one. We were finished up and going out to dinner in Plymouth and at The intersection of Ann Arbor rd and Haggerty rd a guy ran a red light b/c he was fighting with his wife and someone honked their horn and he thought he was supposed to "go" and never ever looked and just went! He crashed into our Dodge mini caravan with his Dodge Dakota pick up with the huge wheel wells etc..Our car ended up facing a whole other direction and it was totalled. I remember some weird noise and smell and then i was out like a light! I awakened on a back board with no eyesight..just some bright sunshine and fuzzy blue shirts on paramedics yelling at me to be still and to "settle down". Then I dont remember anything again til the Hospital. I remember screaming in pain when they tried to do X-rays and my husband said people moved out of the hall b/c they couldn't listen to my pain anymore as I was in complete and utter anguish.

They kept me in for intractable pain and stuck me on IV's of meds for 5 or 6 days and they didn't help me at all. I would never go back to St. Joe's in Ann Arbor ever!! They were mean and unhelpful and found nothing and did nothing until my husband took me home to our own dr's and neurologist. He /they ordered plenty of tests and found out a lot! I had a MTBI or mild traumatic brain injury and had to be in brain rehab for almost 3 yrs...then also i hurt both shoulders and my long thoracic nerve was damaged so it was severe nerve pain and winged scapula and right arm just hanging there and to use it was and is soo painful and it goes numb and cold and feels heavy and hurts so badly...then both knees out of alignment and bone on bone and had surgeries to help but still lots of shots and pain. then my lower back has 3 inoperable herniated discs and DDD (degenerative disc disease) and it hurts to walk long or sit long etc..also then I went to pain dr for a few years and they did all the epidural shots and trigger point injections and shots, meds and psychological tests showing that my quality of life was at a GFA scale of 45 which is pretty low since I couldn't even get myself up off of the floor and had to learn how to transfer myself at rehab. I got Dysautonamia from the head injury and it made me pass out often and get more hurt and I had gotten POTS (postural orthostatic tachycardia syndrome) and it affects gut, motility, memory, brain fog (along with the MTBI didn't need that did i?) and it just messes up all of your autonomic nervous system. I had to get a pacemaker dual chamber and then my world fell apart! My oldest daughter started to act out and i was there for her still as always. I never missed swim meet even in a wheelchair. The only thing I couldn't do was drive and otherwise i was still mom and home and i had to get a book to have the girls write down where they'd be and what time they'd be home or i'd forget and it was terrible and the oldest took full advantage of it. She said she didn't like the rules in our house (hmm the normal : no smoking, no drugs, no drinking no minors sleeping over night at boys or here at our home no boys sleeping over either..pretty average home rules don't ya think?) ..she said also she was "tired of my pain and surgeries" ..she really wished i had died in that accident...that hurts..

SSSoooooo...she left in July 2004 ,she wasn't there to help after my knee surgery, shoulder surgery, and then i had foot surgery in 07 and ended up with RSD after that! But wait..there is more in between...My oldest tried to brainwash and talk the 2 yrs younger sister against me too..lucky it didn't work but she tried and that hurts! She left and hasn't come back. Ive tried to send notes, letters and nice cards but nothing...i called her last Nov. and we met for lunch 3 times, she was not nice at all and lied to others about stuff i supposedly said to her that i never said when we met...I ended up a week after mothers day in 2004 having a mild heart attack. the cardiologist knows how much i always loved my girls and raised them all by myself mostly. he said that he thinks mine was a case of true "broken heart syndrome", hey I lost my child at 17 , actually way before that but didn't know it or wouldn't believe it...their father was/is an abusive, cheating man. He was a cop and got fired and hurt another girl and was found "guilty" of obscene conduct and indecent exposure! He was ORDERED by a judge not to be alone with the girls. they had to be with him with a supervisor only. He moved to Maine 1,000 miles away and rarely called them and 1/2 time didn't even send cards on b-day or Christmas if they didnt or werent acting the way that he expected them to towards him on the phone. He waited til they got older, got them cell phones and started in on brainwashing techniques to turn them away from me right after the accident and after we'd won our lawsuit! He never paid one dime of child support, his father paid it for him to keep him out of jail..but they wanted money. they tried like hell to turn my girls against me and Jessy went with it full throddle b/c she was "mad" at me for being hurt and not focusing only on her 100% any more. I needed some love and help for a while and she couldnt give it to me.Anyways...my heart is still broken and she is still gone and she's made up horrible lies about me and im devastated. Enough of that now.....
Soo...Then in 2007 after my right foot surgery I got RSD, the foot dr /surgeon who did the surgery knew what it was right away. and then i went to a orthopedic foot/ankle specialist and he said it was "classic case of RSD" and he got me more PT and two leg braces b/c my nerves were shot and i had "foot drop" and i would trip over my own feet and fall and hurt more. Then the RSD has now spread to my both feet right still worse all purple and ugly and shiny /red cracking on fire and painful...its in my left knee b/c thats my surgery knee and the weaker one of the two hurt knees. The knee is burning when i awaken in the mornings all red and swollen for now reason except RSD....also its in my mouth and i have special toothpaste from the dentist b/c it burns my mouth sooo bad to tears.

I have it on my upper back to where taking a shower,the water to most feels good but to me it feels like pelting bullets on my back and the nice soft towel feels like a piece of sandpaper...I do it and get it over with and i hate it..baths aren't better b/c they are too cold or too hot and it hurts ti sit there...i went to the pain clinic and they wanted me to get an intra thecal pain pump surgically implanted under my ribs. I'm pretty skinny and that doesn't seem too comfortable to me. and I've heard of so many problems and instead I've opted to be on pain meds 24/7 and its a life of being "married to" them..the patches and the suckers..its horrible...and soon they don't work and then what happens? I don't know yet and i don't want to know!!! So then i go to a rheumatologist to ask for other meds instead of morphine and she said i had Osteoarthritis AND Rheumatoid arthritis!! WHAT??? next??? OMG...another painful disease...what is going on here??? i cant take it some days i jsut want to stay in bed but that makes me hurt more too! Did I tell you yet that then in 2006, I was at the breakfast table with my hubby and youngest daughter and i had a CVA or stroke!!! I did, yes, ...they did eeg and ct scan and it was left brain and it was from the atrial fibrillation that i got in my heart after the minor or mild heart attack..I immediately got put on blood thinner for life but obviously it didn't work enough to prevent the stroke. now my right side is weaker and i have neuropathies in my legs and i slur when i am tired and when i try to talk when I'm tired...i don't sleep well and that's why I'm tired often.

I'm sorry for the long run on post and any misspellings or wrong "ness" but the brain injury took me from a lady with a 4.0 gpa in College who raised her children for all those years alone with zero help from deadbeat dad who had to "go and find himself" and who cheated on me at least 3 time while we were married, that I know of and is lying to my oldest now about everything! He even talked to my girls about our intimate stuff..that is sicko psycho if you ask me...and he is a pervert as we already knew from his being "charged guilty"....sooo he can tell whatever he likes, if my daughter wishes to know the truth she can ask me for reasons, explanations and truths and i will tell her but for now she's choosing to stay with the bad behaviors and lies b/c she is and has manipulated to get all that she thinks she wants in this life...well...my door will always be open to her...i will always love her and though she calls another "mother" now...no one can take my place, i will always be her mom!

One last thing...Ive seen a psycholgist for all of this and the loss of my life the way it was before the accident etc...but also he has told me that i am the "worst childhood trauma case he's seen in the past 35 yrs" of his practice!! He has gotten phone calls from my family members (uncles) and corroborated my stories and validated me and that helped a lot and i was thankful for that even though i know he believed me. Even the SSDI people said the same thing about my case being one of their worst childhood abuse/trauma cases they've seen in 35 yrs or so too! so ya....Ive been through a lot...have you read the books by Dave Pelzer? "Lost Boy:" and "IT"?? i wrote to him and he says we are "kindred spirits"..I have written a book and I'm trying to get money help to get it edited and published ..i hope it happens soon b/c its done for what parts i can do...i have a cover already and its going to help so many abused people, I'm hoping...soo anyways..I've talked waaay too much.. I wanted to give my whold story so I don't have to again..lol...My RSD is by far the most physically painful thing that i have...its terrible and its invisible and we have to educated Dr's and ER's on what this disease is all about.. if you can ..try and get some brochures from like RSD awareness or RSDHOPE.org and then give them out to every dr's office you go to and every hospital you visit...get it out there...weve got to let people know what it is if we want to get a cure someday, right??? we are literally "burning for a cure"...please help...love, suzanne...i hope i didn't offend anyone or talk way too much..just wanted you to know...love,suz..xo


Amber W.
The day started out like any other Sunday.  I went to church, then sat down to work on some biology homework while my room mates put a pizza in the oven.  After a while, I stood up, using the desk to push myself up as I turned to go see if the pizza was done.  When I did so, I experienced a bizarre stinging sensation that went from my elbow to my fingertips (primarily my pinkie and ring finger).  It felt almost like a sudden shock, like when you accidentally get shocked by an outlet.  That one little sensation would change my life.

After several months of tingling and pain in my elbow and fingers, a doctor diagnosed me with Cubital Tunnel Syndrome (CuTS).  Like Carpal Tunnel, CuTS is a trapped nerve, except that the nerve is trapped at the elbow and involves the ulnar nerve instead of the median nerve that is affected by Carpal Tunnel.  Following several months of conservative treatment, the doctor finally decided to go into surgery to relocate my nerve to the other side of the bone that was trapping it.  The surgery was routine, they numbed my arm from the shoulder down, took me in, completed the surgery, and reported that it had gone very well.

As the anesthesia wore off of my arm, I began to notice that something was very wrong.  My fingers were a blueish color and although my pinkie and ring finger still felt numb, I was experiencing a crushing pain in my wrist.  When I went to the doctor's office to be sure the splint was not too tight, I nearly passed out when he touched my fingers and straightened them out.  Obviously, something was very wrong.  The doctor immediately preformed a second exploratory surgery that proved that there was no visible problem.  Following this surgery, I noticed more changes, longer hair growth, sensitivity to cold, rigid nails, and sweat changes.  Even more bothersome was the pain that was completely uncontrolled by extra strength vicodin.  I can remember yelling at my mom to not walk so fast through the living room because it shook the floor and caused pain.  Even light puffs of air were excruciating.

I was referred to a pain management doctor who diagnosed me with Complex Regional Pain Syndrome, type II.  He thinks (and the surgeon agrees) that somehow in surgery, the nerve endured a traction injury which caused CRPS.  Interestingly, the pain has mostly remained only in the distribution of the ulnar nerve, so only half of my hand is affected in addition to the area around the scar on my elbow.

Treatment began immediately; first I had two stellate ganglion nerve blocks which had minimal affect on my pain.  I then endured three weeks with a continuous epidural.  During those three weeks, I had physical therapy every week day.  The epidural allowed me to really work hard at physical therapy without pain getting in my way.  My strength, range of motion, and even sensitivity improved a lot during that time.  Though it was beneficial, the pain returned when the epidural was removed.

Since then, I have been relying on medications, a TENS unit, and more therapy to help manage my pain and continue to gain strength and movement. CRPS was an unwelcome interuption in my life, but I continue to live beyond the pain.

Though some of myy dreams have been devastated, and some of my plans for the future have been destroyed, I find hope. God is my creator, He made my nervous system, and He knows every intricate nerve that communicates with my brain. I know He didn't make a mistake making me, He knew exactly what He was doing.

My goals in life are still the same - love God with all my heart, help those around me to know Him more, and reach out to those who cannot comprehend salvation, but my means of accomplishing my goals have changed. Just like Paul, I've been thrown in a circumstance that seems unpleasant, but I praise God because it gives me a story. It offers a way to meet people I might never meet, it blesses me with the ability to concentrate on God when everything else has faded into the background, it forces me to accept help and rely on other Christians, drawing strength from them when I am down.

Would I choose to have CRPS? No way, but I praise God for the blessing it is to me, even in the darkest of circumstances, I will praise my God because He is worthy. Though I know I face unrelenting pain, I say to God "bring it on, just so long as you use it to glorify you." Blessed be His name, for He is worthy of endless praise.

Joey
Hi, I have been dating a girl with RSD for several months now and I just wanted to share my story with the rest of the RSD angels and supporters here. When I first meet her, I thought she was like any other girl, except for the fact the she was the most beautiful and stunning girl I have ever seen. I meet her over the internet, where we found out we had bumped into each other before. It was not until our date she told me she had a incurable disease called RSD/CRPS.

At first I thought “Hey, no big deal it’s cool! I can handle it!” It’s wasn’t until I heard about the excruciating pain she lives through daily that I gave it another thought. She explained it to me as someone draining the blood from her vains filling them with gasoline and igniting it then wrapping barbed wire around her leg. She told me that its likely that in several years she wont be able to walk and have to get around in a wheelchair.
It’s difficult to hear about that kind of thing and say, “I’m still committed to you babe!” It’s hard, the simple things you take for granted in a relationship become very difficult to perform. Things such as being able to put your hand in her lap, giving her a foot rub, rubbing her leg all became very painful for her. She finds it hard to walk long distances and travel in a car for more than an hour takes much of her energy. I found that she is a strong a capable women with lots of strength.

I pray to God for her everyday that the pain is mild and that she has a good day. I help her when I can or when she lets me, she can be stubborn and refuse help at times and pays for that later but I love her with a passion. I will be there for her whenever she needs me and I’ll offer her as much help as she needs. For any one out there, RSD does not have to be the end of everything. You can find someone out there who understands what it takes to love you. You can live as normal as a life as you can when someone who loves you stands beside you. I love my RSD angel and I will never let her RSD get her down!

Eri
On January 28th 2005 I was run over by a truck. About a year and a half later I was diagnosed with a disease/syndrome called Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy). At first I didn’t think much of it. I was told with some work I would be back to normal. That doctor was wrong. After going through a ton of therapies, that not only didn’t cure me; some even made me worse. I found out there is no cure.

I didn’t expect to have to have to spend the rest of my life on pain meds. No one does. I suppose in a way I am luckier then some, I didn’t just wake up one day with this disease and spend months, years trying to explain to doctors that I’m in pain. No, I had my foot run over by a truck.

When people ask me about it I tend to laugh. Not because its funny. Nothing about the whole situation is funny. But because I don’t know how to respond anymore. I’m past angry. You can’t stay angry forever and I never have been one to hold grudges. Depression comes and goes. I’m not sure whether its possible to live with chronic pain and not have times when your depressed. Mostly I feel lonely.

Nights seem to be the worst. Anything touching me is excruciating. I can’t lay down for too long or sit up, standing is out of the question. Mostly I just toss and turn trying to either distract myself with music or tv. It rarely works. By the time morning comes I am beyond exhausted. Just the idea of having to get up let alone go do something can make me cry.

At 9am I take my meds to get up a 10am. Any earlier and I crash at lunch and never get up again. If I can manage to get up to the living room I can think about doing something that day. Some days my legs refuse to let me walk and I spend that day in bed. The pain is always there. it’s a constant struggle to move, or stay still. Sometimes it even hurts to breathe.

When I have a good day it means I can go out for a bit. I still am in excruciating pain but its at a lower level. The idea of this is hard for most to understand, including doctors. Its as if my body has developed its own ideas on how everything is going to work now. Pain at a 7 or and 8 is a good day. Rarely have I gotten lower. On an average pain scale 7-8 is considered severe. The lowest I have gotten is a 6, that being moderate. My bad days are 9-10. 9 is on the higher end of severe while 10 to most is enough to be hospitalized. For people like me we can’t go to the hospital every time we hit a 10. We would spend our whole life there.

The idea of living like this is hard to comprehend. Some days I feel like its all a horrible nightmare that I am waiting to wake up from. Most I wish it was. I keep telling myself I need to live life to the fullest, and I have tried my best to.


Belinda
Reflex sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome Type 1 or 2 (CRPS). This is a disease that attacks your nerves and nervous system leaving you in debilitating chronic pain. This month (MAY) is World Wide RSD/CRPS Awareness month, so I am writing my story so other people that have this disease or have never heard of it or even have a member of the family or a friend with it, will have a better understanding of what we sufferers go through.

The condition CRPS ‘Complex Regional Pain Syndrome’ as it is now commonly known as was originally named CAUSALGIA and described by Silas Weir Mitchell in 1872 during the American Civil War, when solders were not healing from their wounds but actually getting worse. It wasn’t until the 1940’s, the term Reflex Sympathetic Dystrophy came into use. Now days it is commonly named Complex Regional Pain Syndrome Type 1 or 2. I have type 1. Type 1 and 2 are basically the same, they both seem to have the same characteristics as each other. The only real difference is that Type 1 develops following an event such as a sprain; break in the limb or from an operation. Type 2 develops after a nerve injury.

There is no real test that you can do to diagnose RSD/CRPS, really you can only observe through the symptoms and there is no other condition that can account for the degree of pain and dysfunction that RSD/CRPS sufferers go through.

What is RSD/CRPS?
Trauma is the main contributor of RSD/CRPS, meaning if you have a sprain or an operation on your limb, that’s how it can set in. It is reported to be one of the most difficult and painful conditions to treat. It is a syndrome that consists of BURNING PAIN, MUSCLE SPASMS, LOCAL SWELLING, INCREASED SWEATING, SOFTENING OF BONES, JOINT TENDERNESS OR STIFFNESS, RESTRICTED PAIN MOVEMENT, CHANGES TO THE NAILS AND SKIN AND RAPID HAIR GROWTH ON THE AFFECTED LIMB.

The pain of RSD/CRPS is continuous and can get worse with emotional stress, moving your affected limb or touching can become intolerable. Eventually after non-use of the affected limb, the joints become stiff and the skin, muscles and bones may shrink. RSD/CRPS can really strike at any age but is most common in the ages of 40-60 and for unknown reason RSD is diagnosed in women twice as much as men, but it is increasing in young adults and teens. It is said that some research has proven that if Vitamin C is administered after an injury, it may decrease one’s chances of developing RSD/CRPS.

DIAGNOSIS
There are 3 main parts that are in stages, and they are:

STAGE 1: This stage can last 2 to 6 weeks but may last up to 6 months. At the start the skin is warm, red and become dry. Towards the end of this stage you skin can become cold and sweaty, and becomes a mottled colour of the skin with patches of pale pink on a blue and pink background. Hair and nail growth may start to occur. This is the stage that doctors try and use nerve blocks as they may be able to stop it or have it go into remission. The nerve blocks are rarely used past this stage.

STAGE 2: This stage is characterised by dystrophy. This stage occurs after 2 to 6 weeks or even 3 to 7 months after the initial injury and can last from 3 to 6 months. The skin can also become shiny in appearance and can often be cold, pale, grey and mottled. This is due to the vasoconstriction in the affected limb. Hyperhidrosis (abnormal excessive sweating) is a usual sign at this stage. Joints may become thickened because of stiffness and muscle wasting is a contributing factor. X-ray’s can also show patches of osteoporosis. The pain is still continuous, and this is where the dystrophy can diffuse (to spread).

STAGE 3: This stage is about 8 months after the initial injury. It is known to be characterised by irreversible marked tissue changes. The skin appears smooth, atrophied, glossy, pale, or cyanotic and the skin temperature is decreased. At this stage the changes are usually complete and irreversible. The joints become weak with limited range of motion. Bones may begin to show marked decalcification. It is also said that there are no other conditions can account for the degree of pain and dysfunction.

A delay in prognosis can result in severe physical and psychological problems can start, but in saying that diagnosis is complicated but in some people, they can improve without treatment if caught early.

TREATMENT
Patients with RSD/CRPS are treated with nerve blocks, pain medication such as Fentanyl patches which administers morphine into your blood and replaced every 72 hours (3 days). There are other patches that can be described as well. There are many other treatments that can be used like, Physiotherapy, Tens machine and nerve blockades but realistically the blockades really need to be administered within the first 3 months of being diagnosed for them to be of really any benefit. Acupuncture is starting to makes its mark in the race for alternative medicine for pain relief. There are also implants that directly stimulate the spinal cord through surgically implanting the Neurostimulations into either the epidural space or directly over the nerves themselves, these nerves are located outside the central nervous system. There are also other implants such as drug pumps that deliver pain medication directly on the cerebrospinal fluid. There are also gels which can be of some benefit. Such as ELMORE OIL and FLEXALL which I would recommend both of these products. I currently use Flexall but have used Elmore Oil which is very good too and it is made from all natural ingredients and made in my home town of Bendigo Victoria Australia. Kyle Vander Kype (Australian Olympic Athlete) also endorses Elmore Oil. Voltaren gel is also another rub that can be used.

A lot of patients that suffer with RSD/CRPS also get treatment for depression, which is common in sufferers due to the dibilating impact it has on them. Not being able to perform their normal duties at home or at work also impacts on them, this is why a lot of patients fall into depression. Trying to deal with everyday issues with family and the world as well as being in so much pain just becomes over whelming. I currently use ENDEP which is a drug for depression, they used to use this drug many years ago and is starting to make a come back to treat sufferers of Fibromyalgia which I also have, due to the RSD. This drug has a pain block in it and I must say is not too bad. I have been on it for about 5-6 weeks. But in saying that, what is good for one sufferer may not work on another.

Myself I have been through these episodes a couple of times, it’s like you feel like a failure as you cannot perform your normal house hold duties or even having those family days that you once loved seem to become a burden as you know you are not going to enjoy yourself due to the pain and you make every excuse not to go, which in turn disappoints your family. It also sometimes feel like you are a burden on your family and friends, as you need help in everyday things but you don’t want to ask because you don’t want to burden them.

WHAT I AND OTHER SUFFERERS GO THROUGH EVERYDAY
I personally go through so much pain everyday, by the end of the day I am worse, with stabbing and burning pain which is really debilitating and exhausting. Showering with washing my hair becomes a task just in it self due to the pain of trying to get my arms up there, I have to take breaks in-between washing my hair due to the pain of it all. Even driving can takes its toll on a sufferer of RSD. I have had to put a steering knob on the wheel of my car for driving due to RSD in my left arm and shoulder. My licence got suspended until I did all the driving tests and my licence has known been changed. I am only allowed to drive an automatic car with power steering, and I am to use my steering knob. For those who don’t know what they are, they actually look like the steering devices on a fork lift, nothing special just helps with driving and resting my left arm.

A lot of sufferers of RSD/CRPS have no support; either the family or friends don’t believe them, not through ignorance but through lack of knowledge of what this disease is really like.

My condition is bitter sweet, I have this disease which is the bitter side but I do have fantastic support of my family and friends and I really truly feel blessed for that, as a lot of other sufferers don’t have this, they either get swept under the carpet or they fall through the cracks and are forgotten about. My one wish through all this is for that to change. We need to get the awareness out there, that this disease is real, it is not in our heads and we want our stories to be heard.

PAULA ABDUL AND RSD
Paula Abdul, singer and judge from American Idol and has had RSD since she was 17 due to a cheerleading accident, she was also in plane and car accident which has also led to numerous back surgeries which has also contributed to her RSD. Paula has said that the publicity has raised hopes that the condition of RSD/CRPS may finally get the medical recognition that it deserves.
Paula has suffered this condition for 25 years and has now said that she is doing so much better due to the right medication she is having. Paula was only diagnosed with RSD in 2005.

SUMMARY
So we have learned that RSD/CRPS is a very difficult condition to diagnose and treat, and that the earlier that it is detected and treatment administered can lead to the healing process of this debilitating disease. We also have learnt that the more that this disease is publicised the better other people will learn about it and hopefully have a little bit more compassion for the sufferers of this disease, and that it would get the medical recognition that it does deserve. We know it can spread to other parts of the body and the pain is worse than the initial injury. So if you injure you finger it can spread throughout the entire hand and arm and even spread to the other arm or your legs.

Web sites
I have chosen some web sites that may be beneficial to some sufferers or family and friends of sufferers who would like to know more about this debilitating disease.

A Dr. Colantonia has started a web site for pain sufferers which is: http://crps.physiciansforpatients.com/

He has given up his time to answer questions about RSD and other Chronic Pain Disorders.
RSD Awareness: this site will give you all the RSD chat rooms and RSD support groups.

There is also Facebook which I am a member of and there are so many sufferers of RSD on there and we have started our own little support community which is great as the more support you have the better off you will be.

Now there is a lady by the name of Coralie Wales, she is President and a founding Director of Chronic Pain Australia and she travels around doing seminars for people who have Chronic Pain. She also talks to health and insurance professionals. She has recently done a summit in Melbourne and you can see that interview on her website coraliewales.com

.

Let me say this woman is amazing. I would recommend you go and check her out her websites and join in her newsletters. I wrote her a letter stating who I was and the condition I have which is RSD and she replied and she is publishing my letter into her newsletter, so that is exciting. She is a big believer that us the injured should be in charge and to me that is really scary, I have been pushed and pulled around for nearly 7 years now and told to do this and do that, how do you possibly turn round and say ‘STOP’, I want to control this now. But she teaches that. I wish I had of known that she was in Melbourne as I would have gone to see her, but maybe there will be another time. And hopefully one day I may even get to met her personally and just thank her for helping every person get through Chronic Pain.

So in closing My Story, I really want to encourage you all to check out these websites even if you are not a sufferer of RSD and other chronic Disorders. In doing so you are going to have a better appreciation of what we all go through on a daily basis. It is not easy but we try to get through it the best way we can, and the only way we can do that is with support from our loved ones. So when next time someone tells you they have RSD you might be able to say; “hey I know about that disease and how debilitating it is”, instead of rolling your eyes like you do now. You just might save a life that day. Your little bit of support will go a long way.

So my name is Belinda Miles, I live in Bendigo Australia and I am a sufferer of Reflect Sympathetic Dystrophy. I am letting my story be told, and I am going to stand up and let my voice be heard.
Thank you for reading My Story and I hope I have changed your view and outlook with people that suffer from Reflex Sympathetic Dystrophy (RSD), and other Chronic Pain Disorders.


"Who can I trust"
My whole body trembles,
and I can't stop the pain,
My body won't work,
but my mind is still sane.

'Why is this happening',
'Why me I ask'?
'Well why not',
'Why not', it asks?

They say I now have Sleep Apnea,
What else could go wrong,
just one more worry,
And another verse for the song.

'Why are you so special,
That I can't attack you',
Although I know you don't want me too,
'But get used to it,
As I am here to stay',
'And you are only going to get worse, day by day'.

'Stop it'!! I say,
'Just take it away,
I can't bear it no more,
take the pain away'.

My eye's are leaking,
I don't know what to do,
I don't know where to turn,
Or who I can trust,
I am just not sure,
Oh man I am in such a rut.

So how do I escape this?
When the pain is so bad,
Who can I run to,
How can I trust?.........


Carol R.
Cowiche woman with painful disease hopes to spare others pain.

Carol Rains clutched her husband's hand tightly as she waited nervously for her turn. She looked anxious and maybe a little tired as she smoothed a wrinkle in her jeans.

But not sick.

John Rains was the only person in the room who knew that the right hand he was squeezing is the only part of Carol's body that isn't tortured by a deep, burning pain at the slightest touch or breeze.

Most of the people in the audience turned their attention elsewhere as the Yakima City Council moved to the proclamation section of its March 7 agenda.

But Carol leaned forward in her chair, ready for her long-awaited chance to have a roomful of people acknowledge her eight-year war with chronic pain and the people who don't believe it exists.

John looked at her and smiled, grabbing for his camera as Mayor Dave Edler asked Carol to stand at the lectern while Councilman Ron Bonlender read a proclamation Carol co-authored about a scarcely known disease called reflex sympathetic dystrophy.

"Whereas RSD is a progressive neurological disease that has constant, severe burning pain as its main system," he read ...

"Whereas many health-care professionals mistakenly believe RSD is a psychological condition rather than a physical one ...

"Whereas early recognition and proper management of RSD may lead to the prevention and/or the reduction of the severity of this potentially catastrophic condition ..."

And as if it were the easiest thing in the world to do, it was officially Reflex Sympathetic Dystrophy Awareness Month in the city of Yakima.

To almost everyone, it means nothing.

But to Carol and the few people who have believed her since she was diagnosed with the controversial disease seven years ago, it means everything.

One Friday in July 1998, Carol was moving bundles of wood at Can Am Millwork (now Alexandria Millwork) in Moxee, when she felt a tear in her right knee.

After a doctor's appointment the following week, Carol began physical therapy. In November, she had surgery to repair her torn medial meniscus.

But even after the surgery, the constant ache and occasional tight pain in her leg continued to worsen, forcing her to quit her job within a month.

"I started wondering, 'What is this?' " she says.

Doctors in Yakima and Seattle told her it was impossible for her to be feeling pain. They told her it was all in her head and she should continue physical therapy, she 

Sandra W.

Oct.25,1999 I had a neuroma and spur removed from my right foot, and after that things went downhill. I started having extreme swelling, burning pain, and discoloration, so I went back to the doctor and he decided I needed a reconstruction surgery of whole foot, so Nov.1999 back into surgery I went. The doctor said I had Painful Cavus Foot Deformity Right. Contracted Hammertoes 2,3,4,5,Right. Plantarfexed First Metatarsal Right. Neuroma Second Inter-space Right Foot. Application of Below the Knee Cast. Those were the medical terms he used and of course I believed him. When I woke up from surgery I was screaming so bad from the pain and he said it was from one of the pins sticking out of my toe so he pulled it out. Well that did not help by that night I was screaming again because the cast was to tight and my leg was turning purple so they had to call the doctor in to get the cast off. They then put another cast on. I went through this about 30 times getting the cast took off because of swelling and pain. The worse part was I lived in Beatty Nevada and I had to drive to Vegas which was 3 hours away. We was doing this every other day. There was a point when the doctor told my husband I was to sensitive and acting like a baby, so at that point I gave up, and My husband took a job in California and I started seeing another doctor who finally after a year diagnosed me with RSD. I went through lumbar blocks and they lasted 3 days and I have been on every medication out there trying to find what works for me. Finally in 2004 I couldn't take it anymore so I flew from California to South Carolina and saw doctor Robert Schwart for 2 weeks and got treatments and he put me into remission for 3 years till I took a bad fall in 2007 and things came back with a vengeance. I ended up on pain meds again and on top of all that I started getting heatburn so bad I was aspirating in the middle of the night and then I ended up with pneumonia 8 times in one year so the doctors told me I needed a Nessen Fundoplication surgery to fix the hiatal hernia all the meds caused. I had the surgery June 2010 and now I suffer from excruiting chest and back pain and I can only eat 3 to 4 bites of food. I'm being told the RSD may have spread to the stomach area. On top of all this right after Nessan surgery I lost my gallbladder as well, so my advice is don't have surgery unless you truly have to.

Kerri

In december 2000 I twisted my ankle walking to work in the operating room went to the emergency room X-rays were taken and no broken bones told to follow with my orthopedic dr he sent me for MRI and said 19 year olds don't have pain and to want 6 months do I did finally found a correct dr who found the original posterior tibial tear on the first MRI .. Finally diagnosed sept. 2001 with RSD. Since then I have had countless of blocks all kinds 3 stimulators etc still working in the or 5 of 6 days a week 8-10 hours a day. Recently the RSD spread to my right leg do now both legs are affected and my stimulator quit working in July .... With a dr who know longer cares ... I fell a few weeks ago and woke up couldn't walk ended up in the hospital for 13 days learning to walk again and build strength . I am now home with a nurse and pt 3 days a week. Plus 11 new meds that I am trying to get used to ... To get working again.

Sandra D.

Well had 2 bouts of RSD. 1999, 2007 now in 2012. Not real sure how it happened, don't remember anything at least,but starting to get same symptoms, Redness, stiffness, stinging.Need to find a RSD who specializes in the Ham/fairfield Ohio area.Will be getting into therapy to hopefully do the something and go into remission. Praise God in his Wisdom to heal my lft foot/leg and everyone's RSD..

Pamela H.

On May 3rd 2003 I lifted a patient and tore my rotator cuff I had surgery to repair it in 2004 I was due back to work June 9th but developed the most excruciating pain in my arm memorial day. 6 months later I was diagnosed withe RSD Left arm. I have been through epidurals injections SCS placement and removal all of which has failed i now have full body RSD/ CRPS and take neurotin vicodin and lithium(for depression) Because the pain can get severe I have attempted to end my life I have now accepted the diagnosis just wish I could find a doctor who knows how to treat this disorder

Donna

I fell three years ago. I hurt my right leg quad. Went for mri's, ct scans. Large hematoma. Once it went away, the pain and swelling stayed. I didn't k.ow what was and neither did tbe doctors. It has mirrored itself to my left leg now. Both knees are affected as well. I wear pain patches, hv tens unit, tk meds fir pain. Nothing works. I hv seen my GP, my neuro, chiro, ortho, hypno, pain spec, accu and water therapy. Nothing works. I am now in a horrible flare-up. I walk w a cane. I can only walk a few steps. I cannot walk my dogs, i cannot dance, i cannot travel because of the excruciating pain and burn in my legs. My family is clueless. Uninterested and too busy w their iwn lives. They tell me "everyone has pain. Thats life. Get over yourself." nice, huh? My marriage is horrid and the stress makes it worse. I am on permanent disability and am home 24/7. If i get my hair done or get my nails done, they tell me, "see, your fine. You can get those done." i cant walk thru a mall, I cant clean my house, i cant run w my chows. My life, as i knew it, has been stolen from me. I have no support. I am asked why i lay down during the day. I have fibro as well. They say its in my head! No, its in my legs. Take a look. They're swollen, blue, purple, red, burning hot and ice cold to the touch. But I'm tired if taking a passive role in this disease. I want to do something to make people aware. I want to find a support group. I want to speak to others. To educate, to share, to help heal my emotional being. This didn't have to happen. Because of someone Else's ignorance and laziness, i was hurt. For life. And no i wont get over it. It is me. RSD is me now and i get it. Please help me in whatever way you are able. Everyone is just amazed at my strength. They don't see me cry in bed every night.

Denise
My name is Denise and I am a married, 38 year old, female, who has 5 chronic pain conditions.  It all started in April 2006 when I thought I was just going in for a simple surgical procedure on my toe.  I was an outpatient, and was not even put under, had a local only.  Three weeks after surgery, I was still on crutches, and the pain getting worse, the swelling uncontrollable and my foot ice cold and so sensitive to touch I would scream in agony whenever someone tried to change the dressing.  I called my Dr and he said I need you in immediately.  Without telling me what he was doing he pulled the pin out 3 weeks early, thinking maybe my body rejected the pin.  He wanted me to see a pain management Dr ASAP.  He thought I might have RSD but never said it just made some phone calls for me and got me an appointment.  Well, that day in May changed my life forever, and the journey began on the RSD path from hell.

I had 6 lumbar sympathetic blocks, lots of meds, and PT before I showed any improvement.  Block #7 gave me better results and the swelling that was up to my knee finally started going down some.  It took 6 months of blocks and PT before I reached a plateau of improvement.  I was fortunate at the time, my Dr knew RSD, knew where to send me, and my RSD was contained in the left foot.  This is the exception to most that spend years and handfuls of doctors and testing just to be told it is all in your head.  But, I had severe back pain, leg pain and testing showed I needed a spinal fusion. I have since been diagnosed with spinal stenosis, degenerative disk disease and grade III spondylolesthesis. Recently, I was also diagnosed with herniated disks in my neck at C5-C6 and degenerative changes at C6-C7 as well as bone spurs. I also have been told I have triple crush injury, meaning I have pinched nerves in wrists, elbows and several in the neck.  I have been adding diagnosis to the list as they are added to my charts.  I have chronic back pain, myofascial chronic pain, rib dysfunction and fibromyalgia!  Because of these other problems my PM (pain management) Doctors will not say whether my RSD has spread because it is so difficult to separate all the symptoms I have and all the current diagnosis. 

I battle weekly with the health insurance company who refuses to pay for what my medical doctors develop for my treatment plan.  The added stress and anxiety from not getting approvals for treatment that may reduce my pain levels contributed to higher pain, sleeplessness, depression and an attitude of wanting to just throw in the towel.  Suicide is the #1 killer of RSD and I understand why. 

I lost my job of 9 years in April of 2007, after never missing a day before the RSD.  I could no longer concentrate, I was forgetting steps, did not remember where I was and what I was doing, I was in constant pain (could never get comfortable sitting, standing and moving),  could not sleep at all, blood pressure was spiking to stroke levels, was sick to stomach, dizzy and suffering migraines daily (from medication side effects).  The last day I worked I crashed my van, I had never had an accident before this.  My life was spinning out of control and I knew I could no longer risk driving. 

In July 2007, I was approved for Social Security Disability, without a lawyer on my first try in applying.  I can no longer perform daily chores without suffering terribly after completing them.  Things I use to take for granted like walking, standing, sleeping, riding in a car, reaching, cooking, cleaning, doing laundry, chopping vegetables, washing dishes and taking care of my animals became impossible for me.  I lost friends, had no social life and just wanted to crawl in a dark hole and never emerge again.

RSD touches every part of your life.  It destroys you inside and out, taking away everything.  You question every single day what your purpose in life is now.  Why is there so much and pain suffering and what did I do to deserve this plight.  I feel guilt every day for being a burden upon my husband and family, for financial problems, for stress and added workload to everyone else, for withholding my husband from truly enjoying things we use to and no longer can………

There are positives though.  We know life is short and you never know from day to day what will happen, so we try to enjoy what we can when we can.  I found a network of friends online that understand, care, support and encourage you to fight each and every day.  RSD has brought me closer to God; my faith has been strengthened not weakened in all this.  I have hope for a better tomorrow.  I found a church that has welcomed my husband and me and really tries to understand my pain.  My writing has developed and my spiritual poetry has been brought to a higher level then what I ever imagined.  I now volunteer to do the weekly bulletin for church and I am the editor of the quarterly Newsletter.  I volunteer for usarsd.org as a telephone support operator for anyone needing assistance with RSD.  The best result is I learned how to advocate for my needs and my treatments.  My husband is a Godsend in my life.  He has stepped up in times of need and has showed his dedication to me in so many ways. 

RSD is an awful progressive neurological disease that has changed my life, my husband’s life, my family and friend’s life and the lives of millions around the world.  Help us spread awareness so maybe someday we might have a cure!!!! Thank You

Sandy

In doing research  I have become a bit more knowledgeable of my affliction. When I first developed RSD, I thought I was going crazy. I was having difficulty remembering things, I couldn’t see properly. I had difficulty finishing my sentences. Once tolerant of my children, I could no longer stand the sound of the noises they made. Everything hurt my ears. Now I come to find that this is all normal for an RSD patient. 

It is normal to wonder what it feels like for an RSD patient. Each of us feels different and came about our condition in a different way. My story is a very long story that began on 1/31/07 when I injured my arm trying to operate a faulty piece of equipment at work. I underwent so many tests and procedures. I had an epidural cervical steroid injection which left me looking like I had a stroke. 2 years later I still have a limp, but at least I no longer need a cane. I then had an anterior discectomy with fusion of C6-7. That’s the medical way of saying they removed a disc from my neck and put in a titanium plate and screws to hold together the surrounding vertebrae. They did a great job on that. It was a same day surgery; they cut through the front of my neck and glued it together for minimal scarring. I still catch people staring at my throat though. Now I have a spinal cord stimulator which was inserted while I was awake. This way I could tell the doctor if he was giving me adequate pain control. They also placed a battery pack high in my right buttock. There is an incision along my spine where the electrodes were inserted along my spinal cord. I have a rechargeable stimulator, so I typically recharge for maybe an hour every other week.  Just 2 more scars added to my body, but at least these are covered. This is actually 2 procedures because they do a trial one for a few days to see if it works before they insert a permanent one. 

I’ve had different types of RSD pain. In the beginning it was my entire right arm with intense pain from the initial injury and a pinpoint spot that was stinging and burning. With PT and treatment some of that pain had dissipated. I returned to work and things grew worse. The arm started cramping so badly and my hand would freeze up in one position. My hand started to become discolored and freezing cold as if someone were pouring ice into my veins then taking a sledgehammer and having a go at it for awhile. Soon after that it intensified to a crushing feeling equivalent to putting my hand on a high way during rush hour. This pain is so intense it leaves me screaming into a pillow most days. I have the feeling of fire that started in that pin point area. It has spread through my right arm, areas in my left arm and areas in my right leg. I can’t even scream when I feel like my muscles are being ripped from the bone because at that point, it’s like the air is being sucked from my lungs. In my upper arm I also get the feeling that the bones are being snapped in half. In the summer I would have to wear sweatshirt over my right arm just so I could have the A/C on because I cannot tolerate the cold. I do not typically go outside in the winter unless I have to, five minutes in cold air can cause up to an hour of painful tears. Days spent in bed because it hurt to wear my clothes and I would have to strip down to nothing but a sheet. 

RSD affects every aspect of your life. It changes your relationships. It changes who you are. I was very career oriented; now I feel it has stolen my career from me. I have always fought for everything I have. I have my dream life because I worked for it and I fought for all of it and now 3 letters leave me feeling like I am a failure, like I have accomplished nothing with my life other than get married and have 2 kids. I can no longer provide for my family and have become a burden. My husband has to play the role of both parents at times, cooking, cleaning, yard work, laundry, working, tending to a set of 2 year old twins and then he would have to spend his evening all alone because the twins would go to bed at 8 or 9 and I would soon follow because my meds made me so tired.

Mental health becomes an issue as well. Most people suffer from such terrible insomnia that they start to lose their minds. I’ve always been an insomniac, but now my sleeping pills do not even help and I have begun falling in the middle of the night. I was suffering from post partum depression when I got injured, but now I am being treated for major depressive disorder and Post Traumatic Stress Disorder. I can understand why when I look at my life now. I live day in and day out with incredible pain and I know there is no end in sight. I know this can only get worse. It’s already spreading. There are times that it is so intense and I am thankful to be alone so that my tears can run freely and my screams rip from my chest and all I can think is “Please God, just take me, please, I can’t take this pain”. Believe it or not, it has nothing to do with suicide, it’s just that you are in so much pain at the moment and no medication can touch it and nothing you do can change it and the only thing you can think of is becoming so weak and begging God to make a deal with you.

I try to think positively. It has always been my belief that everything happens for some reason though it may not reveal itself to us yet. I’ve always thought I lived a blessed life,(and I still do) maybe this was meant to knock me down a peg or 2. I am just sure of this silver lining that shines along this dismal cloud that hangs over me. You see, the lining is my family. I see them more, I got to see first steps, hear first words, tuck them in at night. When they were 1½-2 and they would see me cry in pain they would wobble over to me and hug my leg and tell me it was ok and not to cry Mommy. My daughter would kiss my boo boos and drape herself across me when I tried to isolate myself. She would run her hand through my hair. Before they turned 3 they knew where my incisions were and where not to hit Mommy. If they saw me cry, they would ask me if I was sad or if it was my bad arm. My son would pipe in “Mommy, take your medicine, go lay down.”

Should my kids have to grow up the way they do? Should they already know what RSD is? Should my husband have to see me go through this as well? I see how he looks at me. He is a wonderful man and would do anything for me in the world. That is the problem. He sees me in so much pain and there is nothing at all that he can do. I see the pain and the tears well up in his eyes. Then if he wants to caress my arm how do I tell him not to? How do you tell the love of your life that you cant stand to have him touch you now after 15 years because it hurts too much? I guess like workers comp tells me, I will just have to adjust. I will have to adjust to every part of my life being just a little bit different.
 
I wrote the preceding story about a year ago.  Not much has changed.  I was once on a long list of meds which has shortened some.  I was taken off Narcotics which wasnt as bad as i had imagined.  Now instead of a duragesic patch, percocet and lyrica, I am just on suboxone and neurontin.  I now have such bad double vision and light headedness that my driving is limited to my hometown and I have to find others to drive me to my appointments.  I'm back to using my cane now and then since my gait is rather unsteady.  Though undiagnosed, i am positive of the spread to my left arm and right leg and foot.  i think it has spread to the left leg as well.  Now my toes turn blue and there is that same awful pain, but I get through the days.  I have to.

Flora

Greetings, my name is Flora Langel DeKock. I am a 32 year old mother of a 9 year old millennium baby and a recent graduate with a BS in Religious Studies at the University of Northern Iowa. I excel with computer software and love learning new things.

Unfortunately for the last 10 years, I have been learning about something second hand and first hand for the last 2-4 years myself. Sometime prior to when my son was born, my mother twisted her left ankle triggering a normally easily treated disorder called sinus tarsai syndrome which causes the fluid in the ankle to act as if it is infected and create a puss like substance which pushes pressure on the joints in the ankle. Unfortunately as this was not treated properly right away, it is believed the beginning cause of my mothers initial diagnosis of RSDS. Known then as reflexive sympathetic dystrophy syndrome, which wasn't diagnosed until she was a solid 3 years into the symptoms. Once diagnosed, I started researching what could help her, what could slow it down, what not to do and what to do. As I researched, I found time and time again on sites saying that those afflicted should NOT immobilize the limb, should not ice the area, should not do aggressive physical therapy. Three things that are standard treatment for the symptoms she was suffering without recognizing the disorder was in place. These three things my mother was forced to do for three years until the point where she broke and couldn't take anymore.

My mothers condition and all of the research I suggested women had higher chances of contracting the disorder. At the time, documentation suggested caucasian women over 40 were also more likely to be diagnosed with it as well as there were documents that suggest a genetic link. Since then, this documentation has been altered as they are recognizing it earlier and finding it in children as young as toddlers. There has even been found a significant difference in Vietnam where males have it more frequently than women. Lastly, since the starting of the increase in study, there has not been found any verified genetic link. 

Since my mothers diagnosis RSDS has progressed into RSD and now been found to be just one of the the many conditions that are believed to be actually complex regional pain syndrome (CRPS).  Reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy are all believed to be complex regional pain syndrome type I where there is no definitive damage to the nerve the trigger this response in the sympathetic nervous system.

With all of this knowledge, I choose to take extra precautions and use warm moist heat packs, avoid immobilizing my limbs, and when they first addressed my sinus tarsai, the doctors ordered a gentle progression of my physical therapy to ensure not to re-injure or advance any of my symptoms of the RSD. My doctors, already familiar with my mothers case, took extra precautions when they preformed the surgery on my ankle that they otherwise could not do for my mother since her overlying issue of the CRPS could be extensively advanced if they were to attempt to treat it. During my surgery they did an epidural to ensure that if the RSD was present that it did not spread and if it was not present that they did not trigger it. As this is NOT a typical preventative 

procedure, I was extremely lucky to have such a supportive set of doctors for my case.

The doctors slowly and steadily watched my progression after the surgery where my symptoms that suggested RSD was present continued. At this point my surgeon sent me in for evaluation and treatment by one of the best doctors he knew in the area.
I had two injections of bupivicane and guided physical therapy for approximately 5 weeks. After an illness and inability to get to the office, I was denied continuing by my insurance. From that point on, I continued home based physical therapy with no supervision. Since the muscles kept ceasing up, I opted to also start going to a masseuse weekly to help address the issues with the muscles that caused them to tighten.

Since Fall of 2008, I have since seen a specialist that cannot confirm or deny the presence of RSD at that time because he did not see the symptoms. After running a series of tests, he could not find any signs of the RSD being present, but did find I ran positive for Lyme's Disease as well. Unfortunately, my last known exposure to a tick was when I was 11 years old. The Lyme's disease could have been influencing the RSD or the RSD could have triggered the Lyme's disease to resurface. I am still having problems with swelling and am currently on Ibuprofen and Neurontin 300 mg once a day to prevent the "neurological disorder" that causes stabbing pains all across my body and swelling mostly in my limbs but recently moved into my chest.

My primary physician has, as of June, opted for an injection of a steroid to address the swelling in my body and is now again pursuing leads to what is causing the swelling effecting both my soft tissue and my joints. Due to the potential side effects my doctors now testing for explanations for the symptoms. Most recently he tested for rheumatoid arthritis and Lupus and found me negative for both. Dependent on how the symptoms act they will pursue more tests at that time.

I've been extremely lucky to have already educated doctors in the symptoms and signs of RSD. Unfortunately, at the cost of my mothers health.

In regards to my personal life... As I said, I am a mother of a millennium baby. Joseph is my world. He takes care of me if I let him and I help him with what ever I can. I am technically a single mother but my ex of near 6 years and long time friend Leo still lives and assists me and my son with our life challenges. If Joe is sick, he cares for him. And if I'm sick, he sends me to bed and takes care of everything else.

I am very lucky and have so much to be grateful for. RSD in many ways opened my eyes to not just the horribleness of pain that the body TRULY is capable of creating, but also can show you who really cares about you and who is wavering. I only hope you are as bless with the amount of support I have been.


Jeff (Has RSD in his hands and can only write caps so please don't think he is yelling :))
WELL MY NAME IS JEFFREY HARTZOG AND I FIRST BECAME SICK IN JANUARY OF 2000. IT STARTED WITH WHAT I THOUGHT WAS A HEART ATTACK AFTER COMING HOME FROM WORK. I WENT TO THE HOSPITAL IN AN AMBULANCE AS THERE WAS A HUGE SNOW STORM GOING ON AND ROADS WERE VERY SLICK IT ENDED UP NOT BEING A HEART ATTACK THANK GOD BUT THIS STARTED WHAT WOULD PROVE TO BE A LONG LINE OF MEDICAL VISITS AND PROCEDURES FOR SURE.

AFTER THE INITIAL NIGHT I WENT THROUGH AS I SAID SEVERAL MEDICAL PROCEDURES FROM A HEART CATHERIZATION TO UMBILICAL HERNIA SURGERY AND MAY OTHER TESTS FROM EEG’S, EMG’S AND MANY VISITS TO THE ER TO EVEN SPEAK OF EVERY ONE OF THEM. AFTER 5 MONTHS OF GOING TO DR’S I FINALLY GOT A CHIROPRACTOR TO ORDER MRI OF MY BACK FOR ME AS I HAD MENTIONED THIS AS POSSIBILITY TO TWO DR’S, NEITHER OF WHICH THOUGHT I WAS OLD ENOUGH FOR BACK PROBLEM, NOR THOUGHT IT WAS THE CAUSE OF MY HEALTH PROBLEMS AT THE TIME. MY MAIN SYMPTOMS AT THAT TIME SEEMS A FEELING OF DIZZINESS AND PARTIAL PARALYSIS THAT HAPPENED FOR NO APPARENT REASON AT ANY GIVEN TIME. WELL THE MRI PROVED INDEED THAT MY BACK WAS FOUND TO BE THE CAUSE OF MY HEALTH PROBLEMS AS I HAD A RUPTURED DISC AND BONE SPUR AT THE T11-12 LEVEL THAT WERE COMPRESSING MY SPINAL CORD 50% AND THAT WAS WHILE LAYING DOWN? I WAS THEN IMMEDIATELY SENT TO WAKE FOREST BAPTIST HOSPITAL FOR EVALUATION AND WAS TOLD SURGERY WAS NEEDED AND ONLY OPTION AT THAT POINT! THIS IS WHERE THE REAL MEDICAL ISSUES, OR NIGHTMARE, STARTED FOR ME RATHER THAN ENDING HONESTLY.

I HAD SPINAL SURGERY ON JUNE 19 OF 2000 TO CORRECT THE SPINAL CORD COMPRESSION AND INSTEAD OF STANDARD PROCEDURE FOR THE THORASIC DISC AREA THE SURGEON CHOSE TO DO WHAT IS CALLED A COSTOSTRANVERSECTOMY IN WHICH IN STEAD OF GOING IN THROUGH MY STOMACH HE WENT IN THROUGH BACK BUT CUT WAS ABOUT 4 INCES OFF THE CENTER LINE OF SPINE AND ABOUT 8-9 INCHES LONG. THE SURGEON WENT IN AT AN ANGLE CUTTING THROUGH THE MAIN MUSLCES OF MY UPPER BACK “AT THE TIME I DIDN’T KNOW THAT THIS WASN’T THE STANDARD PROCEDURE FOR THORACIC DISC SURGERY?” STILL I THOUGHT THIS WOULD SOLVE MY PROBLEMS AND WAS JUST HAPPY TO KNOW WHAT WAS GOING ON WITH MY BODY AFTER BEING THROUGH SO MANY MEDICAL PROCEDURES OVER THE LAST 5 MONTHS AND WAS READY FOR THE SURGERY SO I COULD HEAL, GET BETTER AND ON WITH MY LIFE. UNFORTUNATELY THIS WAS JUST THE BEGINNING OF A NIGHTMARE RATHER THAN THE END OF MY MEDICAL ISSUES FOR SURE AS INSTEAD OF ENDING MY MEDICAL ISSUES IT ON GREAT COMPLICATED THEM AS THREE DAYS FOLLOWING IS WHEN THE NIGHTMARE OF RSD/CRPS STARTED?             

ABOUT THREE DAYS AFTER MY BACK SURGERY WHILE STILL IN THE HOSPITAL THE PAIN WE ALL KNOW AS THE RSD BURNING PAIN FROM HELL STARTED AND IT WAS 100 TIMES WORSE THAN ANY PAIN I COULD HAVE IMAGINED BEFORE SURGERY FOR SURE ALONG WITH OTHER SYMPTOMS. I WAS CONTINUALLY TOLD IN THE HOSPITAL THIS WAS NORMAL OF COURSE, AS IT WAS FROM IRRITATION TO THE SPINAL CORD AND NERVES FROM THE SURGERY. SWELLING WAS ALSO HORRIBLE ALL OVER MY ENTIRE BACK AND AROUND TO MY FRONT LEFT ABDOMINAL AND CHEST WALL AREA AS WELL. I LEFT THE HOSPITAL AFTER ONLY 4 DAYS AFTER SURGERY EVEN THOUGH I TOLD THEM SOMETHING DIDN’T FEEL RIGHT AS IT WAS LIKE THEY WERE PUSHING ME OUT THE DOOR?

WELL A MONTH WENT BY AFTER GOING HOME ONLY 4 DAYS AFTER MAJOR SPINAL SURGERY AND HAD FOLLOW UP WITH SURGEON AND THE PAIN HAD WORSENED IF POSSIBLE AND THE SWELLING WAS STILL AS BAD AS THE DAY I CAME OUT OF SURGERY IF NOT WORSE AMONG THE OTHER SYMPTOMS FROM COLOR CHANGES TO HOT SPOTS ON MOST OF MY BODY BUT THE WORST PAIN HOWEVER WAS IN MY LEFT CHEST WALL AND ABDOMINAL AREAS AN DESCRIBED AS A THROBBING BURNING AND STABBING PAIN BEYOND BELIEF? THE SURGEON STILL INSISTED THIS WAS FROM THE IRRITATION FROM SURGERY AND NOT ANYTHING ELSE AND WAS GIVING ME HYDROCODONE AND NEURONTIN FOR PAIN BUT IT WASN’T HELPING AT ALL IN ANY WAY WITH PAIN HONESTLY. THIS LED TO HIM SUGGESTING MAYBE I WAS LAZY AND NOT WALKING ENOUGH TO BRING THE SWELLING DOWN AS WELL WHICH MADE ME MAD AS THE PAIN WAS SO HORRIBLE I COULDN’T HARDLY STAND UP NOT TO MENTION WALK? SO I RETURNED HOME AND FORCED MYSELF TO WALK MORE AND MORE EVEN THROUGH ANGER TO PROVE A POINT AND THIS ONLY MADE PAIN WORSE AND SWELLING DIDN’T IMPROVE EITHER AT THIS TIME AT ALL? HE OF COURSE DIDN’T RESCHEDULE ANOTHER FOLLOW UP AFTER THIS VISIT AS ONE WOULD EXPECT FOR MAJOR SPINAL SURGERY, INSTEAD  HE PASSED THE BUCK SO TO SPEAK AND SENT ME BACK TO THE NEUROLOGIST I HAD SEEN BEFORE THEY FOUND THE BACK PROBLEM TO BEGIN WITH FOR MORE TESTING FOR OTHER CAUSES OF MY SO CALLED UNEXPLAINED PAIN.

WELL I WENT ON TO THE NEUROLOGIST AS SUGGESTED AND HE ADMITTED ME TO HOSPITAL TO DO ANOTHER BUNCH OF TEST MOST OF WHICH I HAD ALREADY HAD DONE IN THE PAST TO RULE OUT OTHER CAUSES FROM MS TO ALS AND OTHER DISEASES ALL OF WHICH OF COURSE WERE NEGATIVE. THERE SEEMED TO BE NO CAUSE FOR MY PAIN THEY SAID BUT I SURE FELT IT INDEED AND KNEW IT WASN’T IN MY MIND FOR SURE. THEN I WAS SENT HOME AFTER A WEEK IN HOSPITAL ON 1000MG OF PREDNISONE A DAY FOR 5 DAYS WITHOUT A TAPER WHICH ABOUT KILLED ME IN ITSELF AS THE STEROID DOSAGE HAD REALLY MADE MY ANXIETY GO THROUGH THE ROOF TO BEGIN WITH IN HOSPITAL AND COMING OFF IT WITHOUT TAPER ONLY MADE ANXIETY AND THE PAIN WORSE. ALL OF THIS WAS FOR NOTHING IT SEEMED AS NO ONE COULD FIND AN ANSWER FOR THE REASON I WAS HURTING NOR WOULD THEY ADMIT IT BUT THE SURGEON WANTED ME TO START REHAB AT THIS POINT HE SAID, BUT WHEN I WENT TO THE APPOINTMENT TO THE REHAB CENTER HE HAD NEVER RELEASED ME FOR REHAB AND THEY WOULDN’T TOUCH ME DUE TO THIS? THIS OF COURSE MADE ME ANGRY AND STARTED A LOT OF CALLING TO HIS OFFICE INDEED MOST WITHOUT RESPONSES!

WE THEN CONTINUALLY CALLED THE SURGEON WITHOUT RESPONSE FROM HIM AT ALL EXCEPT HIS OFFICE DESK CLERK CALLING TO SAY HE SAID THIS OR THAT BUT NO ATTEMPT AT HELPING ME OR ANOTHER APPT WHAT SO EVER? THIS MADE US VERY ANGRY OF COURSE ALL THE WHILE I WAS SUFFERING AND HAD BECOME TO A POINT OF LIVING MY LIFE IN A HOSPITAL BED AS I COULDN’T PULL UP FROM OUR REGULAR BED AS IT WAS TO LOW? I WAS ALSO IN WHEELCHAIR AS COULDN’T WALK DUE TO PAIN AND SHAKING LEGS AND REFLEXES WERE OVER ACTIVE AS SHOWN BY MANY MEDICAL EXAMINATIONS BUT THE REASON WASN’T KNOWN BY ANYONE IT SEEMED. THIS WENT ON FOR SEVERAL MONTHS TO ALMOST A YEAR DURING WHICH TIME I SEEN SEVERAL OTHER DR’S MAINLY NEUROLOGIST FROM WAKE FOREST TO DUKE MEDICAL CENTER. THE DEPRESSION AND ANXIETY HAD INCREASED AS WELL AS THE PAIN TO A POINT I WAS HAVING PANIC ATTACKS SEVERAL TIMES A DAY HONESTLY AND ENDED IN SEVERAL TRIPS TO ER’S FOR FEAR OF HEART ATTACKS AND OTHER ISSUES ALL OF WHICH SHOWED NOTHING OF COURSE AND THEIR SOLUTION WAS GIVE ME A SHOT FOR PAIN AND SEND ME HOME WHICH NEVER HELPED WITH PAIN OR GAVE ME ANY ANSWERS FOR SURE. THEN CAME TO RECOMMENDED TRIPS TO THE PSYCHOLOGIST AND PSYCHIATRIST AS MOST OF US HAVE HAD MAKING ONE FEEL THEY THOUGHT OF COURSE ALL THE PAIN WAS IN YOUR HEAD AND THAT YOU WERE GOING CRAZY BUT I KNEW THE PAIN WAS THERE AND NO ONE COULD TELL ME OTHERWISE! THIS WAS BECOMING THE WORST NIGHTMARE I HAVE EVER LIVED HONESTLY AND IT CONTINUED ON FOR SEVERAL MONTHS LIKE THIS WITH NO ANSWERS FROM ANYONE AND NOT MANY DR’S WILLING TO EVEN SEE ME AS A RESULT OF NOT BEING RELEASED BY SURGEON EVEN THOUGH I HAD CALLED AND INSISTED ON THIS ON SEVERAL OCCASIONS WITH NO RESPONSE AT ALL? WE DID FINALLY GET HIM THROUGH A THREATENING LETTER TO RESCHEDULE ME FOR ANOTHER APPOINTMENT NEARLY A YEAR AFTER THE SURGERY HOWEVER AND HE DID MORE MRI’S AND JUST TOLD ME THERE WAS NOTHING HE COULD SEE FOR THE CAUSE OF PAIN AND THAT HE DID HIS JOB RIGHT WHICH WAS TO DECOMPRESS MY SPINAL CORD? NO OFFER FOR HELP OR IDEAS TO HELP ME JUST A VISIT TO SAY HE DIDN’T SEE THE CAUSE AND GOODBYE WAS ALL THERE WAS?

FINALLY MY AUNT WHOM IS A NURSE GOT ME APPT WITH ANOTHER NEUROSURGEON WHO WOULD SEE ME EVEN THOUGH THE ORIGINAL SURGEON HAD NEVER RELEASED ME. I  HAD TRIED DOING THIS MYSELF ON SEVERAL OCCASION BUT SEEMS NO OTHER SURGEON WOULD SEE ME AS LONG AS THE ORIGINAL SURGEON HASN’T RELEASED YOU? I HAD SEVERAL OTHER MRI’S THROUGH THIS PERIOD OF TIME AND SHOWED NO REAL PROBLEMS THEY COULD SEE. HOWEVER THIS NEW NERUOSURGEON AT LEAST DID SAY I NEEDED TO BE IN A PAIN MANAGEMENT CENTER FOR TREATMENT. HE HAD ME IN A PAIN CLINIC WITHIN 2 WEEKS AND THOUGHT ONCE AGAIN MAYBE THIS WOULD HELP AND I COULD GET ON WITH LIFE WITH SOME PAIN CONTROL? THEY FIRST TRIED SEVERAL MEDICATIONS ALL WITHOUT SUCCESS AND THEN CAME THE SCS TRIALS NEITHER OF WHICH WORKED AND THE SURGICAL INTERVENTION DURING THE SECOND TRIAL ONLY INCREASED THE PAIN AND CAUSED SPREADING. AT THIS TIME IS WHEN THE PAIN SPECIALIST HAD RECOMMENDED TO MY WIFE AT THE TIME THAT I BE PUT IN A HOME AS HE DX ME WITH SYMPATHETIC MEDIATED PAIN AND SAID I WOULD NEVER BE THE SAME AGAIN AND TAKING CARE OF ME WOULD BE IMPOSSIBLE FOR HER TO DO? LUCKILY AT THE TIME SHE DIDN’T AGREE AND WE CONTINUED TO SEARCH FOR HELP THROUGH THE INTERNET.

THE INTERNET SEARCH KEPT LEADING US TO THIS CONDITION CALLED RSD AND CRPS BUT WE DIDN’T KNOW WHAT IT WAS OF COURSE BUT DID FIND SEVERAL ONLINE WHOM HAD IT AND HAD BEEN DISCUSSING IT ONLINE AS WELL. THROUGH THIS WE FOUND TWO DR’S WHOM WERE CONTINUALLY MENTIONED AND WERE NOT GIVEN ANYTHING BUT PRAISE IN ALL ON THE FORUM POSTS WE READ SO WE EMAILED BOTH DR’S AFTER FINDING THEM ONLINE. ONE OF THEM WAS A DR STANTON HICKS AND THE OTHER WAS DR., HOOSHANG HOOSHMAND IN FL. I SAID A PRAYER CONCERNING THIS PAIN AND ASKED THE LORD TO PLEASE HELP AS I COULDN’T CONTINUE TO LIVE IN THIS SHAPE. THE FOLLOWING DAY AFTER WE SENT THE EMAILS DR. HOOSHMAND’S OFFICE CALLED ME CONCERNING THE EMAIL AND SET UP A PHONE CONFERENCE WITH HIM PERSONALLY FOR ME WITHIN A WEEK. DURING THE TIME BETWEEN THAT CALL AND THE PHONE CONFERENCE I MADE A LIST OF ALL THINGS I HAD BEEN THROUGH WHAT MY SYMPTOMS WERE AND WHEN THEY STARTED AND MEDICATION I HAD BEEN ON AS WELL AS THEY ASKED ME TO DO FOR REFERENCE FOR HIM AND ME DURING THE CALL. I FAXED A COPY OF ALL THIS TO HIM BEFORE THE PHONE CONFERENCE. THEN CAME THE PHONE CONFERENCE WITH HIM AND SUPRISINGLY IT WAS ACTUALLY HIM AND HE WAS SUPER NICE ON THE PHONE AND HAD A COPY OF ALL WE HAD TYPED OUT IN FRONT OF HIM AS WELL. HE SAID HE THOUGHT HE COULD HELP ME AND WANTED TO SEE ME WITHIN A MONTH? WELL THIS WAS A CHALLNEGE FOR US AS WE LIVED IN NC AND A TRIP TO FL WAS 13HR DRIVE OF WHICH I DIDN’T KNOW IF I COULD HANDLE OR NOT? THERE WAS ALSO THE FACTOR OF THE COST OF TRAVELING EXPENSES AND THE FACT HE DIDN’T CONTRACT WITH ANY INSURANCE COMPANIES OF COURSE BUT I SOLD MY TRUCK FOR MONIES TO GET THERE AND PAY THE FIRST UP FRONT COST AND MADE THE TRIP. WELL I SAID THEN THE LORD ANSWERED MY PRAYERS AND INTENDED FOR ME TO GO TO FL TO SEE THIS DR INDEED AS I FELT IT IN MY HEART FOR SURE! SO OFF WE WENT TRAVELING TO FL FOR THE FIRST OF WHAT WOULD BE MANY TRIPS IN THE FUTURE TO DR. HOOSHMAND INDEED!  THE FIRST DAY WAS FILLED WITH ANSWERING QUESTIONS AND VIRTUALLY GIVING MY LIFE HISTORY TO HIM FROM INJURIES I HAD FROM A YOUNG AGE UNTIL THE BACK SURGERY THAT STARTED THIS PAIN! HE ALSO DID A THERMOGRAPHIC IMAGE OF MY BODY AFTER SETTING WITH NO CLOTHES ON IN A ROOM AT 68 DEGREES FOR 30 MINUTES WHICH WASN’T VERY PLEASANT INDEED. HOWEVER THIS IMAGE SHOWED SOMETHING TO PROVE VERY IMPORTANT AND THAT WAS WHERE THE RSD WAS ACTUALLY EFFECTING ME AND THE TEMP DIFFERENCES IN AREAS OF MY BODY AND THEY CORRELATED WELL WITH ALL THE PLACES I WAS HAVING MY WORST PAIN “SURPRISE” I DIDN’T THINK SO AND NEITHER DID THEY. WELL DURING MY FRIST WEEK OF TREATMENT AT HIS CLINIC HE HAD ME OUT OF WHEEL CHAIR AND WALKING ONCE AGAIN AND I WAS SO HAPPY FOR SURE AND HAD POSITIVE DX OF RSD/CRPS SO NOW KNEW WHAT WAS WRONG WITH ME AND THE TREATMENTS HE WAS OFFERING SEEMED TO BE WORKING FOR ME ALONG WITH THE MEDICATIONS HE STARTED ME ON AS WELL AND ON THE WAY HOME WE ACTUALLY STOPPED AT A DRIVE THROUGH ZOO AND I GOT OUT FOR THE FIRST TIME IN ALMOST 2YRS TO WALK IN PUBLIC.

AFTER THIS FIRST TREATMENT I STARTED WORKING ON GETTING MUSCLE BUILT BACK UP IN MY BODY AS PAIN WAS UNDER SOME CONTROL BUT HAD TO MAKE TRIPS TO FL EVERY THREE MONTHS FOR RE-TREATMENT WITH BLOCKS AND CHECKUP FOR A WEEK AT A TIME. THIS WAS HARD FINANCIALLY AND EVENTUALLY SENT US INTO BANKRUPTCY BUT I WAS GETTING MORE AND MORE PAIN CONTROL AS I WENT EACH TIME SO WE CONTINUED GOING FOR SURE AND WHEN MONEY DIDN’T SEEM TO BE THERE FOR NEXT VISIT THE LORD PROVIDED IN SOME WAY THE MONIES NEEDED FOR TREATMENT AND TRIPS TO SEE DR. HOOSHMAND AND HASHMI IN FL. I CONTINUED THESE TRIP TO FL AND ACTUALLY RETURNED TO WORK AT MY JOB FOR THE STATE OF NC WORKING ON AN AGRICULTURE RESEARCH STATION IN MAY OF 2002 AFTER ONLY A COUPLE OF VISITS TO DR. HOOSMANDS AND I WAS FEELING WELL ENOUGH I THOUGHT TO GO BACK TO WORK. OF COURSE THIS PROVED TO BE ANOTHER CHALLENGE AS DR. HOOSHMAND HAS PUT ME UNDER RESTRICTIONS AND THEY DIDN’T WANT ME TO RETURN TO WORK? I HAD BEEN THROUGH SO MUCH AND WORKED SO HARD AND NOW THE PLACE I HAD WORKED FOR 14YRS AND LOVED DIDN’T EVEN WANT ME BACK WHICH WAS A BIG BLOW TO ME BUT I CONTINUED TO FIGHT FOR MY RIGHT TO RETURN TO WORK. WELL FINALLY THEY ALLOWED ME OT RETURN WITH THE RESTRICTIONS. HOWEVER THIS PROVED OVER TIME TO HAVE BEEN A MISTAKE ON MY PART I DIDN’T WANT TO ADMIT AS MOST OF US DON’T THAT I COULD NO LONGER DO THE THINGS I USED TO DO ALL THE TIME AND TOOK FOR GRANTED! THE FIRST 10 MONTHS OR SO WERE GREAT WITH LESS PAIN AND GETTING BACK INTO THE SWING OF WORKING MY JOB BUT AFTER THIS PERIOD THE PAIN STARTED TO INCREASE ONCE AGAIN SLOWLY AND I DIDN’T EVEN TELL ANYONE AS I DIDN’T WANT ANYONE TO KNOW AND ALSO DIDN’T AS I MENTIONED WANT TO ADMIT I COULDN’T DO MY JOB AS I USED TO DO IT BEFORE ALL THIS HAPPENED? DURING THIS TIME I WON MY FIRST SSD CASE AND WAS RECOMMENDED TO DO A CLOSED END SETTLEMENT BY MY LAWYER AT THE TIME IF I THOUGHT I WOULD BE ABLE TO CONTINUE WORK FOR OVER 2 YRS SO I AGREED AND CONTINUED TO WORK EVEN THOUGH THE PAIN INCREASED MORE AND MORE UNTIL AN INCIDENT THAT HAPPENED TO ME WHILE NOT AT WORK.

THIS INCIDENT WAS I FELL FISHING WITH MY SON IN APRIL OF 2004 HITTING MY BACK HARD ON A ROCK WHICH INCREASED MY PAIN TO A LEVEL I COULD NO LONGER WORK ONCE AGAIN AFTER 1YEAR AND 11 MONTHS I HAD BEEN BACK TO WORK. AS MENTION THIS WAS LATER PROVEN TO BE SOMEWHAT OF A MISTAKE ANYWAY AS PAIN HAD INCREASED STEADILY OVER THIS PERIOD OF TIME AND TRIPS TO FL BECAME FURTHER AND FURTHER APART DUE TO FINACIAL ISSUES. THIS LED TO WORSENING OF PAIN, SPREADING OF THE RSD AND OVERALL ENDING OF MY CAREER AT WORK. I CONTINUE TO SEE DR. HOOSHMAND UNTIL NOV OF 2OO4 AT WHICH TIME HE WAS FIXING TO RETIRE AND DR. HASHMI HAD LEFT HIM TO OPEN HIS OWN PRACTICE AS WELL. I STARTED ONCE AGAIN TO SEARCH FOR A PAIN DR CLOSER TO HOME TO MANAGE THIS MONSTER WITHOUT SUCCESS ONCE AGAIN AS NO PAIN SPECIALIST I SEEN WAS INTERESTED IN DOING THE BLOCKS THE WAY DR. HOOSHMAND HAD BEEN DOING OR PRESCRIBE CERTAIN MEDICATIONS THAT I WAS ON EITHER FOR THAT MATTER AND THE SAME FRUSTRATIONS I HAD FOUND IN THE PAST BEFORE FINDING DR. HOOSHMAND WERE ONCE AGAIN SHOWING TO BE MOST STRESSFUL AND DISAPPOINTING WITH NO HELP AT ALL FOR THE MANAGEMENT OF MY PAIN. THEY WOULD JUST SAY WE WANT DO THE BLOCKS THE WAY HE DOES AS WE DON’T DO THEM THAT WAY AND WE WANT PRESCRIBE THAT MEDICATION FOR SOME REASON OR THE OTHER EVEN THOUGH I HAD BEEN THROUGH ALL THE MEDS THEY WERE OFFERING IN THE PAST WITH NO HELP WITH PAIN AND THE ONES I WAS TAKING HAD BEEN HELPING AT LEAST SOMEWHAT WITH MY PAIN? THEY WERE CLOSE MINDED INDEED AND I WENT TO SEVERAL DR’S ONLY TO GET DISGUSTED SEVERAL TIMES AS PAIN CONTINUED TO INCREASE AND SPREAD THROUGHOUT MY BODY. FINALLY I DECIDED I HAD TO RETURN TO FL ONCE AGAIN TO SEE DR. HASHMI AT HIS NEW PRACTICE IF I HAD ANY HOPES OF GETTING SOME RELIEF, SO AGAIN IN SEPTEMBER OF 2005 I RETURNED TO FL FOR TREATMENTS WHICH DID HELP AGAIN WITH PAIN LEVELS BUT IT HAD GOTTEN TO A POINT THAT THESE TREATMENTS DIDN’T EVEN WORK AS WELL AS THEY HAD IN THE PAST. I CONTINUED TO SEE HIM AS I COULD AFFORD TO MAKE TRIPS BUT NOT NEAR AS OFTEN AS I NEEDED TO KEEP PAIN UNDER ANY REAL CONTROL SO IT CONTINUED TO SPREAD DUE TO THIS LACK OF TREATMENTS! NEW MRI’S SHOWED FURTHER DETERIORATION IN MY SPINE ALONG WITH ARTHRITIS AS WELL DURING THIS TIME AS THE RSD AND MY LACK OF BEING ABLE TO GET UP AND MOVE AS MUCH AS I SHOULD HAD TAKEN ITS TOLL ON MY BODY FOR SURE. THE LAST MRI I HAD IN 2006 SHOWED I HAD 6 MORE RUPTURED DISCS 4 IN THORACIC AREA AND THE OTHER TWO IN LUMBAR AREA OF MY BACK ALONG WITH MULTIPLE LEVELS WITH ARTHRITIS AND SCOLIOSIS OF THORACIC SPINE AS WELL TO THE SIDE OF THE INCISION MADE FOR THE SURGERY.  OF COURSE NO SURGERY WAS RECOMMENDED AS A RESULT OF THE RSD AND FEAR OD MAKING IT WORSE EVEN THOUGH BY THIS TIME I HAD BEEN DX AS FULL BODY RSD INVOLVEMENT ANYWAY? THEN I WAS DX WITH PITUITARY ISSUES AS RESULT OF BLOOD WORK DR. HASHMI DONE THAT SHOWED LOW HORMONE LEVELS IN MORE THAN ONE HORMONE. I HAD A BRAIN MRI AND THAT SHOWED NOTHING SIGNIFICANT WRONG WITH MY PITUITARY GLAND BUT IT WASN’T WORKING NONE THE LESS. THIS WAS CAUSING ME TO HAVE LOW CORTISOL, TESTOSTERONE AS WELL AS OTHER HORMONE LEVELS IN MY BODY AND NO EVERY AT ALL ON TOP OF THE PAIN. I WAS IMMEDIATELY STARTED ON A LOW DOSE OF DEXAMETHASONE TO REPLACE CORTISOL AND ANDROGEL TO REPLACE THE TESTOSTERONE LEVELS TO MORE NORMAL LEVELS AND DIAGNOSED WITH ADRENAL INSUFFICIENCY AS WELL AS HYPOGONADISM AS WELL DUE TO THIS PROBLEM. THEN LATER ON IN THE YEAR OF 2006 I WAS DX BY MY GP WITH THE ONSET OF DIABETES AS WELL ALONG WITH ALL THE OTHER PROBLEMS SO IT SEEMED MY BODY WAS FALLING DOWN AROUND ME A LITTLE AT A TIME? I MADE ONE MORE TRIP TO FL AFTER THIS AS I ALSO DUE TO BECOMING DIABETIC I COULD NO LONGER HAVE THE BLOCKS THAT HAD HELPED ME FOR YEARS DUE TO THE GLUCOSTEROIDS USED IN THEM SO THAT OPTION WAS LEFT OUT AT THIS POINT. SO ONCE AGAIN I STARTED SEARCHING FOR DR IN NC LOCALLY TO GET A PAIN PUMP EVALUATION AS THIS IS WHAT DR. HASHMI HAS THOUGHT WAS MY NEXT COURSE OF ACTION DUE TO NOT BEING ABLE TO HAVE THE BLOCKS ANYMORE AND HAVING SUCH ISSUES WITH PAIN. THAT WAS OVER TWO YEARS AGO NOW AND STILL DON’T HAVE A PAIN PUMP THOUGH I HAVE FOUND A GOOD PAIN DR IN NC FINALLY AFTER 9YRS OF ON AND OFF SEARCHING. HE IS IN WINSTON SALEM AND ABOUT A 2 HOUR DRIVE AWAY FROM MY HOME BUT CLOSER THAN FL FOR SURE. WE LOOKED AT THE PAIN PUMP AS OPTION AFTER TRYING A COUPLE OF OTHER MEDICATIONS FIRST BUT MEDICARE AND INSURANCE COMPANY DENIED TO PAY FOR THE PUMP AS RESULT OF COMPUTER GENERATED DEPRESSION STUDY THAT SHOWED LOW LEVELS OF DEPRESSION? WHO WOULDN‘T HAVE DEPRESSION AFTER LIVING IN CONSTANT PAIN LIKE THIS FOR 9YRS?? ANYWAY I AM PRESENTLY LIVING DAILY WITH PAIN LEVELS OF 7-8 AS NORMAL AND 10+ ON BAD DAYS WHICH AS MOST OF YOU PROBABLY KNOW IS NO FUN WHAT SO EVER! WE ARE WORKING ON MEDS ONCE AGAIN TRYING TO FIND SOLUTION WITH SOMETHING ELSE AND USING DIFFERENT COMBINATION BUT EACH TIME WE SWITCHED SO FAR IT HAS ENDED IN WORSE PAIN RATHER THAN BETTER PAIN. I AM SEEING A PSYCHOLOGIST AS WELL AS SUGGESTED TO TRY AND GET THE PAIN PUMP APPROVED EVENTUALLY OR SOMETHING THAT WILL HELP LESSON MY PAIN SO I CAN FUNCTION ON A MORE NORMAL BASIS WHICH ISN’T THE CASE NOW FOR SURE. MEDICARE HAS DENIED THE PUMP BASED ON PSYCH EXAM THAT SHOWS LOW LEVELS OF DPERESSION SO THAT IS ON BACK BURNER NOW AS WELL? I LIVE DAILY WITH PAIN LEVELS OF 8 OR HIGHER AS WELL NOW. PAIN DR IS WORKING WITH ME HOPING TO GET ME INTO A CLINICAL TRIAL FOR INFUSION PUMPS SO I CAN GET THE PUMP AND BYPASS MEDICARE ALL TOGETHER BUT THAT IS EVEN ON HOLD PENDING FDA APPROVAL FOR ONE OF THE PUMPS TO BE USED IN THE STUDY SO I HAVE NO WAY OF KNOWING WHEN AND IF THIS WILL EVER HAPPEN? I CONTINUE TO HAVE ALL THE OTHER HEALTH ISSUES FROM ADRENAL INSUFFICIENCY, HIGH BP, SWELLING, COLOR CHANGES, COMPLETELY DESTROYED SPINAL COLUMN WITH ONLY 1 DISC LEFT IN MY BACK NOT RUPTURED WITH A LOT OF NERVE COMPRESSION AND FLATTENING OF SPINAL CORD AT 2 LEVELS TO ADD TO THE FULL BODY RSD AS WELL AS OTHER RELATED HEALTH ISSUES BUT WITH THE HELP OF THE LORD MAKE IT THROUGH ONE DAY AT A TIME. I KNOW THIS HAS BEEN LONG AND DRAWN OUT BUT TO TRULY TELL THE HORROR OF ALL THIS I FELT I NEEDED TO GO INTO SOME DETAIL CONCERNING MY HISTORY WITH THIS ILLNESS. TRUST ME IT COULD HAVE BEEN A FULL BOOK IF I GOT DOWN AND INTO EVERY DR AND PROCEDURE I HAVE HAD OVER THE LAST 10YRS FOR SURE AS MOST OF US WITH RSD PROBABLY COULD DO AS WELL. THE PROGRESSION IN PAIN MANAGEMENT IS PROGRESSING IN THE LAST NINE YEARS BUT HAS A LONG WAY TO GO AND THE ISSUE IS THAT THE MEDICAL FIELD IS BEHIND THE RESEARCH BEING DONE AS MOST DON’T EVEN KNOW ABOUT THE MOST RECENT TREATMENT OPTIONS EVEN OUT THERE SADLY AS THEY DON’T KEEP UP CLOSE ENOUGH TO THE MATERIAL BEING RELEASED! SO WE HAVE A LONG WAY TO GO IN LOOKING FOR PROPER TREATMENTS AND A POSSIBLE CURE FOR THIS HORRIBLE PAIN CONDITION FOR SURE.

IN CONCLUSION I HOPE THIS STORY WILL HELP SOMEONE IN SOME WAY KNOW THAT THEY ARE NOT ALONE IN THIS BUT ALSO MAYBE NOT MAKE SOME OF THE MISTAKES THAT WERE MADE ALONG THE WAY IN MY HISTORY AND DEMAND A QUICKER AND BETTER DIAGNOSIS FROM THE DR’S AS IT IS YOUR BODY AND THEY WORK FOR YOU AND NOT THE OTHER WAY AROUND AS A LOT OF THEM THINK INDEED SO SADLY. WE CAN BE STERN WITHOUT BEING JERKS AND EDUCATED WITHOUT ABOUT OUR CONDITION WITHOUT BEING A DR AS WELL AS WE AREN’T STUPID EITHER AS A LOT OF DR’S THINK WE ARE AS WELL IN MY EXPERIENCES. MY PRAYERS GO OUT TO ALL WHOM READ THIS AND  I HOPE THAT THEY GET A QUICKER DIAGNOSIS AND PROPER TREATMENTS SOONER FOR BETTER CHANCES AT REMISSION THAN MOST OF US HAD JUST A FEW SHORT YEARS AGO. THIS IS MY STORY OF THE LAST 10 YEARS OF MY LIFE WITH THIS CONDITION AND THIS IS JUST THE PAIN ASPECT AND NOT THE ISSUES IT HAS CAUSE WITH FAMILY AND OTHER ASPECTS OF MY LIFE AS I AM NO LONGER MARRIED AS WIFE LEFT ME AFTER 7YRS INTO THIS DISEASE AND KIDS LIVE WITH ME FOR THE MOST PART AND THEY NOT ONLY HAVE BEEN DAMAGED IN WAY AND STRIPPED OF A NORMAL CHILDHOOD IN WAYS BUT ALSO IT HAS MADE THEM WORRY ABOUT ME AT A TIME THEY SHOULD HAVE BEEN ENJOYING LIFE TO THE FULLEST AS WELL. THIS IS MY BIGGEST REGRET CONCERNING THIS CONDITION ACTUALLY IS WHAT IT HAS TAKEN FROM ME AND NOT GIVEN ME HONESTLY. I HOPE EVERYONE HAS SOME SORT OF SUPPORT LINE WITH THIS CONDITION THAT IS STRONG AND SECURE AS IT TAKES IT DAILY HONESTLY AND TOUGH TO HANDLE ON YOUR OWN INDEED AND MANY DON’T KNOW OR UNDERSTAND THIS AT ALL AND WITHOUT THEM LIVING WITH THE PAIN I DON’T KNOW IF THEY CAN UNDERSTAND IT TOTALLY HONESTLY.

Tammy

My Name is Tammy L Nelson and have major damage throughout legs, back and arms but also have CRPS throughout. I will be 36 in April, I am happily married and have a handsome son that is 9 years old and a daughter (no longer lives at home). I spend my days in 24/7 pain nonstop, spasms, keep legs elevated due to circulation problems, limit myself to doing things around the house some I cant do at all and then what I do do causes so much pain I sweat so bad my shirt is soaked, keep things to a low volume so much more. I struggle to do things others take for granted: to sit, lay down and get back up, to stand, to just walk (which I use crutches or use wall and have pain with every step), to bathe, to wear clothing/shoes, to hug and so many other things. 

I have lived with pain since a car accident when I was 14 years old, as years went on I had more pain and the damage became more severe. I was told when I saw first surgeon after accident that I'd end up in wheelchair in my twenties. The pain in my back was so severe at times, that I would drop and then in time knees began to give out due to damage in there as well. I went through many therapy appointments, doctor appointments, which they tried so many different things to help me, in the end for nothing to work. I had to learn that this is how it was going to be and learn to live with it all. When I had my daughter at 18, I was told due to all the damage, it was not in my best interest to have any more children, shouldn't of had even her probably, it had caused more damage and would cause even more damage or worse. Having no choice, I learned I had to work through the pain, limit what would cause more problems. However no matter what i did everything progressed. My back was so severe in 1999, pain was so bad I could barely take a step and almost didn't walk down the isle at my own wedding and didn't want to even go to reception because the pain was that severe but went out of respect.

My husband aware of how bad I was getting always told me not to work, so that I wouldn't be in so much pain and be able to rest more. I never listened. However we then decided to have a child together, with me agreeing to stay at home and raise him. We both knew it was a risk but it was mine to take, although others weren't happy with the risk. In 2001 I gave birth to my son and believe it or not I came out of it ok, yes caused more back pain etc, but didn't fully knock me down like they had thought. We were so happy, I would be able to still do parks, field trips, and so on. I wasn't like most mothers and wasn't easy to hold him, carry him, play certain ways with him, I had many limits and found ways to work around them. However pain in body was and had been to much for already several years, in which I cried many times when no one was looking, my son was about to start school it was time for me to get fixed what they could before they couldn't. I was falling much more, barely able to walk even several blocks, a lot of inflammation and more.

It was July 2004, I went to doctor whom referred me to surgeon. In 1999, they had stated I needed a fusion in several areas and much cleaning was needed also, but was scared and never went back. Surgeon had x-rays etc on both back and knees. The damage found was bad, he couldn't believe what he saw, said I shouldn't of been able to walk and should be passing out from the pain. My kneecaps and back needed surgery as soon as possible, however knees would need to be fixed first, then we would do back, however couldn't fix all of it I was told. I underwent surgery in both knees with a more severe surgery in the right knee. From that moment my life had changed for the worst and nothing was going to be the same again. The knees never healed properly and my legs were never the same, pain was constantly unbearable, muscles had atrophy which made no sense due to all the therapy I was doing, there was discoloration if bent, stood or tried to walk on them, a lot of swelling. A simple touch would make tears stream down my face.I had to be wheel chaired everywhere, with crutches i could only bear so much on leg so very limited. My life was on hold and my immediate family, However bills had to get paid and mostly home alone with my son then 3 and things were needed. I would have to get to steps for upstairs to get to butt then get to floor to scoot to kitchen to make our lunches and then I cried every step to make it to bathroom and screamed to lower down, to clean what I could was unbearable but couldn't handle having to just sit there. I couldn't carrying anything so everything was put by me in the morning. From then on there was no more walks to park for my son and in time he wouldn't remember me ever walking. I ended up being sent to neurologist, whom did many test, in the end to tell me he had bad news and diagnosed me with CRPS. He began to start to treat it, felt he could get me off crutches, get pain somewhat under control and for me to get back some of my life.

Now almost 6 years later, still crutches, need wheelchair if to far however back has gotten so bad cant handle wheelchair so I go through pain to take each step. After trying one medication after another, still no control on the pain and my disease has progressed and has traveled to most areas. I am limited to mostly my home, when I do get out its usually doctor appointments and surgeries. Now after many surgeries, doctors, procedures and facing another one and likely more surgeries, my body continues to get worse. There is no cure, so I spend my days telling and being told wishes of less painful days, do whatever I can to keep my mind busy, do what little I can and find something good in it. I try not to think of the future because to be honest it scares me.

My son, my husbands and my life isn't the same, we do not do theaters, parks, long drives. I cannot make it to my sons productions at school and the ones I have we leave early because my level of pain gets to high. We can't plan things, we do most things last minute if i get the courage to deal with the pain to do it. We are mostly home and don't get to get together with others much everything is usually at places or their homes, which most times I am unable to do. Coming to visit at ours is far and in between and many we only see if I go through the pain to get to them. We have lost family and friends, We have learned things most don't. We don't take each day for granted, we know how special each day is. My family suffers with me, with my not being able to do things, they can't. They see what I go through everyday and they know they can't fix it. I appreciate my husband and my son and love them very much. They cheer me through the days, help me when down, by cheering me up. They are who gets me through this disease as well as all my true friends and those I have met through this disease. May someday we find a cure, may we all have less painful days.

Amy

December 27, 2007 will be a day I will never forget. Not only is it my oldest sons birthday, it is also that day that I was trudging along working on my Robotic Welder, felt a pop, a burning sensation all the way down my arm and couldn't move it. Off to the ER I went. That day has changed my life so many ways, in ways I will never forget.

Since that day I have been thru 4 Dr's, PT, OT and no one could seem to find the problem. I struggled almost daily, to even be able to use my arm. Not being able to reach, raise or lift anything. Some said it was Tendonitis, some said Frozen Shoulder, but yet.. the burning, the stinging, just would NOT go away.

Finally, after a year of struggling with this, the Dr I had here told me he was going to send me to a shoulder specialist to see if there was anything she could help me to do. At this time as well, WC was fighting me, I couldn't get help from anyone. I had to end up using my own insurance, which was fine if I could have gotten the help I needed.

In February of '08 I was finally sent to the specialist who in turn said, she was not sure what was going on, but wanted to pass me to a PM dr.. Which was fine with me. By Now i am crying, begging for someone to help me, just help me to keep this pain to a minimal and so she thought she did.. Off I went to the PM who I seen from March 08 to current. He started me on Neurontin, and I went on my Merry way. Hoping that this would help.. Mind you, This was the first time I had been on Medication since my accident. I truly thought I was dying.. I was up for trying anything now.. so the Neurontin was a welcomed thing.

I continued seeing my drs for the next year trying this med and that.. My Shoulder Spec.. not wanting to try surgery for fear of making anything worse, What i was getting now was this... I don't know what to do with you Amy, I really don't know. Over and over and over...

So on April 24th 1009 My 39th birthday.. They after trying so many things, finally gave me a diagnosis....CRPS. What a GREAT birthday gift.. one that I will get to keep FOREVER.. YAY!!! :(

At this point, they have tried to send me to and RSD DR.. an RSD PM and I couldnt see any of them... Why you ask? Because of Workmans Comp. They denied me everytime. So now, I am sitting and waiting for a hearing in April to see if I WC is going to start paying.. and allowing me to attend the dr that i truly need to see.

It has been one heck of a roller coaster ride for me, there are some days I can not make it out of my bed. There are some days I can not even think about, what this is not only doing to myself, to my family.. but my friends as well.. I guess I can say this... I am so thankful that many of my friends now reside on line.

The pain that we all endure is not something that any of us should have to go through. Its been one of the most trying things in my life to ever have felt. The deep shards of glass that strike thru my feet, my hands and my arm/shoulder and now into my neck, are the most horrendous feeling, feelings I have ever experienced. I hope that in time just like the rest of you. We can get our word out and spread to enough people to let them all know, What RSD is...and how to manage if not to get thru for good.

My Dr's have both told me that had I of gotten in to see them within the first 3-4 months of this happening, They probably would have been able to either put me into Remission, or helped me so that other parts of my body were not affected. However, just a recap.. What started out in my shoulder, has now totally taken over my complete arm and hand. Moved into my feet and legs, and now.. working on my neck.. in the most inconvenient way. Someday, maybe someday.. Someone will find us the cure!!! Here is to hoping.

So, as I sit here and share my story I want each and everyone of you to just remember.. Even tho this monster has a hold on us, and it can affect every part of our being.. It cant not take away our sense of self-- If you can put a smile on your face at least 1 time a day or even TRY to.. .you are doing a fantastic job. My heart goes out to all of you fellow RSD's. I am always here to lend and ear, or a should to cry, scream, on. You are all in my thoughts and prayers daily...

Gentle Hugs,
Amy

Kaylee

This disease called CRPS is the biggest monster that I have yet to face in my life.  I am a 16 year old girl who had everything going for me playing club soccer (goalie), going to school, hanging out with friends and family, going to church all the time, rarely seeing doctors, and many more things.  But, on May 16, 2008 all that I had ever known was ripped away from me.  That day was just like any other day for me, but when 6:00pm came around it was time for soccer practice little did I know that was my last club soccer practice for the rest of my life.  Soccer was the only thing that I knew, soccer was my passion, and what I wanted to do in life.

When I was playing soccer I didn't have to think about what my next step or move was going to be, it was all just natural, an instinct for me.  It all started when, a soccer ball was coming at me when I was standing in the goal, so I went to dive for the ball and that's when everything changed.  I heard a loud "pop" from my right knee, and was instantly in pain, but as I have done countless times I "sucked" it up and kept playing.  The next practice which was two days later I was still in pain, but was still going to practice and do what I loved and not let the physical pain stop me.  During the practice I was in a lot of pain but kept going.  My team and I then started to scrimmage another club team, then that's when one of the girls came in on me and slid straight into that same knee I had injured just two days ago.  After that hit, I was on the ground and could not move because of the debilitating pain.  I never would have thought that I would be in pain for  days, months, and years to come.  Those next few days I didn't do anything about it, but when I could no longer take the physical discomfort my dad took me to the president of my soccer club who is a physical therapist.  The physical therapist thought that I may of just bruised the bone or something so he sent me home, and asked that I come back two days later to start physical therapy.  When I came back those two days later my knee was very swollen, bruised, and yellow.  The physical therapists assistant took off my brace that I was wearing and saw my knee and her jaw dropped, I was scared because I hadn't seen it that day.  She immediately went and got the physical therapist, and he was in shock over it.  He then ordered a MRI, and set me up with one of his contacts who was an orthopedic surgeon, who also happened to be one of the top doctors in our state.  I could not get in to have an MRI for about two weeks, so until then I was going to physical therapy three times a week.  My physical therapist told me that I had to start using crutches because he did not want to further damage my knee.  I had the MRI, and it turned out that I had a torn meniscus and a strained ACL.  The orthopedic surgeon said that he wanted to try and rehab the knee to avoid having surgery.  Since the knee injuries, I was not able to straighten the knee at all no matter what I did.  This was very perplexing for both the physical therapist, the doctor, and I.  I continued with the PT, but I was not able to straighten the knee, and I was not making progress with the PT.  My orthopedic surgeon tried cortisone shots, drawing fluid out of the knee, an ice machine, and the last thing he tried was something called a Dynasplint.  That splint was so painful because every night I had to crank it so it would force my knee straighter and straighter every night.  But, it didn't work.  

Now, it was September of 2008 and I was still on crutches and not able to straighten my leg.  September 9 was a big day for me, my freshman day of high school!  No matter how much pain I was in I was not going to use crutches.  So, I walked around the huge campus my first day of high school.  I was in terrible pain, but was determined to get through the day. Although, I was wearing a brace that day in effort to try and make things a little easier.  As always after the first day of school you have a long list from teachers of all the school supplies that you need, so my mom took my sister and I to the store.  I got out of the car and entered the store, and then my mom all of a sudden called me and said, "Look at your knee!  What happened? Whats wrong?"  I had no idea what she was talking about so I looked down and my knee was the size of a basketball, there was redness spreading throughout my leg like wildfire, severe pain, and bruising running up and down the entire leg.  We immediately went home and called the doctor, and we were told to go to the emergency room as soon as possible.  When I was finally seen the doctors were shocked, and then started trace the outline of the redness with a sharpie because it was spreading so quickly, they gave me pain medication, and decided to admit me to the hospital.  It turned out that I had cellulitis in my knee so I was on antibiotics for a couple of days, and then I was seen by another orthopedic surgeon.  He decided that I need to have an arthroscopy on my knee, we then found out that my plica band was flipped up under my kneecap (which was preventing me from straightening my knee).  Then, the PT commenced, but the pain got out of hand, discolorations of my leg, and swelling.  I was questioned several times if I was hurting myself at night because the doctor just could not figure out what in the world was going on.  He then sent me out to a rheumatologist, which revealed nothing.  So, I was referred to the UCLA pediatric pain program. 

Two months later I got an appointment to see a doctor at the UCLA Pediatric Pain Program.  The doctor I saw there was amazing by far the most amazing doctor I have had to date.  He inspired me to get better, and he was the one who made the diagnosis of CRPS in the right leg.  I was put on medications, patches, and was told to come back the next month.  Months and months later I still was not better, and he was let go from the program because they had lost their funding.  I was devastated.  About a month later, I saw the head of the pain program there at UCLA and I didn't like her.  Unfortunately, I then left their pain program.  

It was now February of 2009.  I had not been able to urinate for two days.  It had never happened to me so I didn't think of it as a problem to tell one of my parents.  I then told my mom on the second day.  We went to urgent care and that's when I had to have a foley catheter put in, and said I had urinary retention.  I had it in until about the end of March, beginning of April.  One day, I woke up with severe stomach pain so I went to the emergency room, and from there was admitted to the hospital.  I was there for a week, and the doctors hadn't found anything so they discharged me.  The next day I returned to the emergency room because the pain was to severe and was vomiting.  So, I was admitted to the hospital again.  The doctors at the hospital were just amazing, they literally ran almost every test they could think of.  But, still they found nothing that was causing the stomach pain.  The doctors there did find an infection called VRE (Vancomycin Resistant Enterococcus), and I was put on isolation because it is a bad infection that can only respond to about two antibiotics.  I was put on Cubicin and Gentamicin (strong antibiotics) in order to kill the infection.  A week later, I was discharged from the hospital again, except this time on about 25 medications, and with a PICC line (basically an IV that goes straight to the superior vena cava) which I was giving myself antibiotics twice a day everyday for about a month.  When I was in the hospital the urinary retention ended up going away so that was amazing!  The stomach pain and vomiting went on for about another month and then went away.  

On the 4th of July 2009 I was not able to urinate again.  So, off we went to the emergency room and had another catheter put in.  The doctors drained over 1200cc from my bladder (almost 2 liters)! This time I went to a urologist for a follow up.  She decided to keep the catheter in for another month or two.  I then learned how to self-catheterize myself.  Which I still do to this day.  I had two tests called a cystoscopy and an uro-dynamics study to determine what was wrong with my bladder.  But, they were no help with diagnosing the problem.  The only thing that it showed was that my bladder is completely shut down.  To this day I am still not able to go to the bathroom without having to self-catheterize which has now become routine.  I have been having major problems now because I get very frequent infections because I am putting something foreign in my body 4 times a day.  The really hard part is that the doctors say that I only need a new catheter every two weeks, which we think is what is causing the infections. 

Now, I have full body CRPS, and physical therapy, medications, nerve blocks, therapy, and hypnotherapy do not work.  I was just approved to go to Cleveland, Ohio for the Pediatric Pain Rehabilitation Program!  I will be attending that as soon as possible. Hopefully, this will be the key to getting better, and hopefully being able to walk again, gain back bladder function, and get rid of the stomach pain, and vomiting that has recently just came back.  

I now know that even though I have to endure this pain everyday that it all happens for a reason!  I would not have been able to meet all the amazing people that I have!  I am so appreciative for them, and I feel that I have made life long friends! Without God, amazing RSD Angels, friends, and family I would not be able to get through this.  Because there is not many meetings and get togethers for us RSD Angels my friend Ailsa and I have taken the initiative to plan a CRPS Retreat!  I hope that we are able to inspire people with our stories, and to raise more awareness for this monstrous disease!  Since I have so many health problems I now have realized that my true calling in life is to become a doctor and to help other people in need!  I love God, my RSD Angels, friends, and family for supporting me through this!  I will get through this bump in the road!  

One last thing:  "Someday everything will all make perfect sense.  So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason!"

Margie B.
I have suffered with RSD for 18 months. Before that, I had no idea it existed. When I get asked about my hand, I try to give a short answer but no one knows what RSD is either and I wind up telling this long story about pain and nerve endings and pain and meds and pain. now I just say "I was attacked by a land shark" smile and walk away. I don't know what else to say and I don't want to talk about it when I try so hard to forget about it!

Suzanne
Hello. .. My name is Suzanne Stewart, and I joined this group because of the many many times that people would say to me "but you don't look sick!" I think that is great and I'm happy that I don't LOOK sick...but the fact of the matter is that I'm in pain a great deal of the time and only my Dr's see it and my family that lives in my house with me. They are my hero's and have stuck by me and loved me when I'm not as easy to love as I wish I was b/c I'm in pain and/or I'm tired from lack of sleep or low meds ..any of these can make us crabby, a little.

My story goes back to 2002, august 11th...we (hubby and i) were at Milford Memory Daze, a street art fair. We were sipping lemonade and walking around and had just dropped the girls off at a birthday party for one and the rec center for lifeguarding job ,the other one. We were finished up and going out to dinner in Plymouth and at The intersection of Ann Arbor rd and Haggerty rd a guy ran a red light b/c he was fighting with his wife and someone honked their horn and he thought he was supposed to "go" and never ever looked and just went! He crashed into our Dodge mini caravan with his Dodge Dakota pick up with the huge wheel wells etc..Our car ended up facing a whole other direction and it was totalled. I remember some weird noise and smell and then i was out like a light! I awakened on a back board with no eyesight..just some bright sunshine and fuzzy blue shirts on paramedics yelling at me to be still and to "settle down". Then I dont remember anything again til the Hospital. I remember screaming in pain when they tried to do X-rays and my husband said people moved out of the hall b/c they couldn't listen to my pain anymore as I was in complete and utter anguish.

They kept me in for intractable pain and stuck me on IV's of meds for 5 or 6 days and they didn't help me at all. I would never go back to St. Joe's in Ann Arbor ever!! They were mean and unhelpful and found nothing and did nothing until my husband took me home to our own dr's and neurologist. He /they ordered plenty of tests and found out a lot! I had a MTBI or mild traumatic brain injury and had to be in brain rehab for almost 3 yrs...then also i hurt both shoulders and my long thoracic nerve was damaged so it was severe nerve pain and winged scapula and right arm just hanging there and to use it was and is soo painful and it goes numb and cold and feels heavy and hurts so badly...then both knees out of alignment and bone on bone and had surgeries to help but still lots of shots and pain. then my lower back has 3 inoperable herniated discs and DDD (degenerative disc disease) and it hurts to walk long or sit long etc..also then I went to pain dr for a few years and they did all the epidural shots and trigger point injections and shots, meds and psychological tests showing that my quality of life was at a GFA scale of 45 which is pretty low since I couldn't even get myself up off of the floor and had to learn how to transfer myself at rehab. I got Dysautonamia from the head injury and it made me pass out often and get more hurt and I had gotten POTS (postural orthostatic tachycardia syndrome) and it affects gut, motility, memory, brain fog (along with the MTBI didn't need that did i?) and it just messes up all of your autonomic nervous system. I had to get a pacemaker dual chamber and then my world fell apart! My oldest daughter started to act out and i was there for her still as always. I never missed swim meet even in a wheelchair. The only thing I couldn't do was drive and otherwise i was still mom and home and i had to get a book to have the girls write down where they'd be and what time they'd be home or i'd forget and it was terrible and the oldest took full advantage of it. She said she didn't like the rules in our house (hmm the normal : no smoking, no drugs, no drinking no minors sleeping over night at boys or here at our home no boys sleeping over either..pretty average home rules don't ya think?) ..she said also she was "tired of my pain and surgeries" ..she really wished i had died in that accident...that hurts..

SSSoooooo...she left in July 2004 ,she wasn't there to help after my knee surgery, shoulder surgery, and then i had foot surgery in 07 and ended up with RSD after that! But wait..there is more in between...My oldest tried to brainwash and talk the 2 yrs younger sister against me too..lucky it didn't work but she tried and that hurts! She left and hasn't come back. Ive tried to send notes, letters and nice cards but nothing...i called her last Nov. and we met for lunch 3 times, she was not nice at all and lied to others about stuff i supposedly said to her that i never said when we met...I ended up a week after mothers day in 2004 having a mild heart attack. the cardiologist knows how much i always loved my girls and raised them all by myself mostly. he said that he thinks mine was a case of true "broken heart syndrome", hey I lost my child at 17 , actually way before that but didn't know it or wouldn't believe it...their father was/is an abusive, cheating man. He was a cop and got fired and hurt another girl and was found "guilty" of obscene conduct and indecent exposure! He was ORDERED by a judge not to be alone with the girls. they had to be with him with a supervisor only. He moved to Maine 1,000 miles away and rarely called them and 1/2 time didn't even send cards on b-day or Christmas if they didnt or werent acting the way that he expected them to towards him on the phone. He waited til they got older, got them cell phones and started in on brainwashing techniques to turn them away from me right after the accident and after we'd won our lawsuit! He never paid one dime of child support, his father paid it for him to keep him out of jail..but they wanted money. they tried like hell to turn my girls against me and Jessy went with it full throddle b/c she was "mad" at me for being hurt and not focusing only on her 100% any more. I needed some love and help for a while and she couldnt give it to me.Anyways...my heart is still broken and she is still gone and she's made up horrible lies about me and im devastated. Enough of that now.....
Soo...Then in 2007 after my right foot surgery I got RSD, the foot dr /surgeon who did the surgery knew what it was right away. and then i went to a orthopedic foot/ankle specialist and he said it was "classic case of RSD" and he got me more PT and two leg braces b/c my nerves were shot and i had "foot drop" and i would trip over my own feet and fall and hurt more. Then the RSD has now spread to my both feet right still worse all purple and ugly and shiny /red cracking on fire and painful...its in my left knee b/c thats my surgery knee and the weaker one of the two hurt knees. The knee is burning when i awaken in the mornings all red and swollen for now reason except RSD....also its in my mouth and i have special toothpaste from the dentist b/c it burns my mouth sooo bad to tears.

I have it on my upper back to where taking a shower,the water to most feels good but to me it feels like pelting bullets on my back and the nice soft towel feels like a piece of sandpaper...I do it and get it over with and i hate it..baths aren't better b/c they are too cold or too hot and it hurts ti sit there...i went to the pain clinic and they wanted me to get an intra thecal pain pump surgically implanted under my ribs. I'm pretty skinny and that doesn't seem too comfortable to me. and I've heard of so many problems and instead I've opted to be on pain meds 24/7 and its a life of being "married to" them..the patches and the suckers..its horrible...and soon they don't work and then what happens? I don't know yet and i don't want to know!!! So then i go to a rheumatologist to ask for other meds instead of morphine and she said i had Osteoarthritis AND Rheumatoid arthritis!! WHAT??? next??? OMG...another painful disease...what is going on here??? i cant take it some days i jsut want to stay in bed but that makes me hurt more too! Did I tell you yet that then in 2006, I was at the breakfast table with my hubby and youngest daughter and i had a CVA or stroke!!! I did, yes, ...they did eeg and ct scan and it was left brain and it was from the atrial fibrillation that i got in my heart after the minor or mild heart attack..I immediately got put on blood thinner for life but obviously it didn't work enough to prevent the stroke. now my right side is weaker and i have neuropathies in my legs and i slur when i am tired and when i try to talk when I'm tired...i don't sleep well and that's why I'm tired often.

I'm sorry for the long run on post and any misspellings or wrong "ness" but the brain injury took me from a lady with a 4.0 gpa in College who raised her children for all those years alone with zero help from deadbeat dad who had to "go and find himself" and who cheated on me at least 3 time while we were married, that I know of and is lying to my oldest now about everything! He even talked to my girls about our intimate stuff..that is sicko psycho if you ask me...and he is a pervert as we already knew from his being "charged guilty"....sooo he can tell whatever he likes, if my daughter wishes to know the truth she can ask me for reasons, explanations and truths and i will tell her but for now she's choosing to stay with the bad behaviors and lies b/c she is and has manipulated to get all that she thinks she wants in this life...well...my door will always be open to her...i will always love her and though she calls another "mother" now...no one can take my place, i will always be her mom!

One last thing...Ive seen a psycholgist for all of this and the loss of my life the way it was before the accident etc...but also he has told me that i am the "worst childhood trauma case he's seen in the past 35 yrs" of his practice!! He has gotten phone calls from my family members (uncles) and corroborated my stories and validated me and that helped a lot and i was thankful for that even though i know he believed me. Even the SSDI people said the same thing about my case being one of their worst childhood abuse/trauma cases they've seen in 35 yrs or so too! so ya....Ive been through a lot...have you read the books by Dave Pelzer? "Lost Boy:" and "IT"?? i wrote to him and he says we are "kindred spirits"..I have written a book and I'm trying to get money help to get it edited and published ..i hope it happens soon b/c its done for what parts i can do...i have a cover already and its going to help so many abused people, I'm hoping...soo anyways..I've talked waaay too much.. I wanted to give my whold story so I don't have to again..lol...My RSD is by far the most physically painful thing that i have...its terrible and its invisible and we have to educated Dr's and ER's on what this disease is all about.. if you can ..try and get some brochures from like RSD awareness or RSDHOPE.org and then give them out to every dr's office you go to and every hospital you visit...get it out there...weve got to let people know what it is if we want to get a cure someday, right??? we are literally "burning for a cure"...please help...love, suzanne...i hope i didn't offend anyone or talk way too much..just wanted you to know...love,suz..xo


Amber W.
The day started out like any other Sunday.  I went to church, then sat down to work on some biology homework while my room mates put a pizza in the oven.  After a while, I stood up, using the desk to push myself up as I turned to go see if the pizza was done.  When I did so, I experienced a bizarre stinging sensation that went from my elbow to my fingertips (primarily my pinkie and ring finger).  It felt almost like a sudden shock, like when you accidentally get shocked by an outlet.  That one little sensation would change my life.

After several months of tingling and pain in my elbow and fingers, a doctor diagnosed me with Cubital Tunnel Syndrome (CuTS).  Like Carpal Tunnel, CuTS is a trapped nerve, except that the nerve is trapped at the elbow and involves the ulnar nerve instead of the median nerve that is affected by Carpal Tunnel.  Following several months of conservative treatment, the doctor finally decided to go into surgery to relocate my nerve to the other side of the bone that was trapping it.  The surgery was routine, they numbed my arm from the shoulder down, took me in, completed the surgery, and reported that it had gone very well.

As the anesthesia wore off of my arm, I began to notice that something was very wrong.  My fingers were a blueish color and although my pinkie and ring finger still felt numb, I was experiencing a crushing pain in my wrist.  When I went to the doctor's office to be sure the splint was not too tight, I nearly passed out when he touched my fingers and straightened them out.  Obviously, something was very wrong.  The doctor immediately preformed a second exploratory surgery that proved that there was no visible problem.  Following this surgery, I noticed more changes, longer hair growth, sensitivity to cold, rigid nails, and sweat changes.  Even more bothersome was the pain that was completely uncontrolled by extra strength vicodin.  I can remember yelling at my mom to not walk so fast through the living room because it shook the floor and caused pain.  Even light puffs of air were excruciating.

I was referred to a pain management doctor who diagnosed me with Complex Regional Pain Syndrome, type II.  He thinks (and the surgeon agrees) that somehow in surgery, the nerve endured a traction injury which caused CRPS.  Interestingly, the pain has mostly remained only in the distribution of the ulnar nerve, so only half of my hand is affected in addition to the area around the scar on my elbow.

Treatment began immediately; first I had two stellate ganglion nerve blocks which had minimal affect on my pain.  I then endured three weeks with a continuous epidural.  During those three weeks, I had physical therapy every week day.  The epidural allowed me to really work hard at physical therapy without pain getting in my way.  My strength, range of motion, and even sensitivity improved a lot during that time.  Though it was beneficial, the pain returned when the epidural was removed.

Since then, I have been relying on medications, a TENS unit, and more therapy to help manage my pain and continue to gain strength and movement. CRPS was an unwelcome interuption in my life, but I continue to live beyond the pain.

Though some of myy dreams have been devastated, and some of my plans for the future have been destroyed, I find hope. God is my creator, He made my nervous system, and He knows every intricate nerve that communicates with my brain. I know He didn't make a mistake making me, He knew exactly what He was doing.

My goals in life are still the same - love God with all my heart, help those around me to know Him more, and reach out to those who cannot comprehend salvation, but my means of accomplishing my goals have changed. Just like Paul, I've been thrown in a circumstance that seems unpleasant, but I praise God because it gives me a story. It offers a way to meet people I might never meet, it blesses me with the ability to concentrate on God when everything else has faded into the background, it forces me to accept help and rely on other Christians, drawing strength from them when I am down.

Would I choose to have CRPS? No way, but I praise God for the blessing it is to me, even in the darkest of circumstances, I will praise my God because He is worthy. Though I know I face unrelenting pain, I say to God "bring it on, just so long as you use it to glorify you." Blessed be His name, for He is worthy of endless praise.

Joey
Hi, I have been dating a girl with RSD for several months now and I just wanted to share my story with the rest of the RSD angels and supporters here. When I first meet her, I thought she was like any other girl, except for the fact the she was the most beautiful and stunning girl I have ever seen. I meet her over the internet, where we found out we had bumped into each other before. It was not until our date she told me she had a incurable disease called RSD/CRPS.

At first I thought “Hey, no big deal it’s cool! I can handle it!” It’s wasn’t until I heard about the excruciating pain she lives through daily that I gave it another thought. She explained it to me as someone draining the blood from her vains filling them with gasoline and igniting it then wrapping barbed wire around her leg. She told me that its likely that in several years she wont be able to walk and have to get around in a wheelchair.
It’s difficult to hear about that kind of thing and say, “I’m still committed to you babe!” It’s hard, the simple things you take for granted in a relationship become very difficult to perform. Things such as being able to put your hand in her lap, giving her a foot rub, rubbing her leg all became very painful for her. She finds it hard to walk long distances and travel in a car for more than an hour takes much of her energy. I found that she is a strong a capable women with lots of strength.

I pray to God for her everyday that the pain is mild and that she has a good day. I help her when I can or when she lets me, she can be stubborn and refuse help at times and pays for that later but I love her with a passion. I will be there for her whenever she needs me and I’ll offer her as much help as she needs. For any one out there, RSD does not have to be the end of everything. You can find someone out there who understands what it takes to love you. You can live as normal as a life as you can when someone who loves you stands beside you. I love my RSD angel and I will never let her RSD get her down!

Eri
On January 28th 2005 I was run over by a truck. About a year and a half later I was diagnosed with a disease/syndrome called Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy). At first I didn’t think much of it. I was told with some work I would be back to normal. That doctor was wrong. After going through a ton of therapies, that not only didn’t cure me; some even made me worse. I found out there is no cure.

I didn’t expect to have to have to spend the rest of my life on pain meds. No one does. I suppose in a way I am luckier then some, I didn’t just wake up one day with this disease and spend months, years trying to explain to doctors that I’m in pain. No, I had my foot run over by a truck.

When people ask me about it I tend to laugh. Not because its funny. Nothing about the whole situation is funny. But because I don’t know how to respond anymore. I’m past angry. You can’t stay angry forever and I never have been one to hold grudges. Depression comes and goes. I’m not sure whether its possible to live with chronic pain and not have times when your depressed. Mostly I feel lonely.

Nights seem to be the worst. Anything touching me is excruciating. I can’t lay down for too long or sit up, standing is out of the question. Mostly I just toss and turn trying to either distract myself with music or tv. It rarely works. By the time morning comes I am beyond exhausted. Just the idea of having to get up let alone go do something can make me cry.

At 9am I take my meds to get up a 10am. Any earlier and I crash at lunch and never get up again. If I can manage to get up to the living room I can think about doing something that day. Some days my legs refuse to let me walk and I spend that day in bed. The pain is always there. it’s a constant struggle to move, or stay still. Sometimes it even hurts to breathe.

When I have a good day it means I can go out for a bit. I still am in excruciating pain but its at a lower level. The idea of this is hard for most to understand, including doctors. Its as if my body has developed its own ideas on how everything is going to work now. Pain at a 7 or and 8 is a good day. Rarely have I gotten lower. On an average pain scale 7-8 is considered severe. The lowest I have gotten is a 6, that being moderate. My bad days are 9-10. 9 is on the higher end of severe while 10 to most is enough to be hospitalized. For people like me we can’t go to the hospital every time we hit a 10. We would spend our whole life there.

The idea of living like this is hard to comprehend. Some days I feel like its all a horrible nightmare that I am waiting to wake up from. Most I wish it was. I keep telling myself I need to live life to the fullest, and I have tried my best to.


Belinda
Reflex sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome Type 1 or 2 (CRPS). This is a disease that attacks your nerves and nervous system leaving you in debilitating chronic pain. This month (MAY) is World Wide RSD/CRPS Awareness month, so I am writing my story so other people that have this disease or have never heard of it or even have a member of the family or a friend with it, will have a better understanding of what we sufferers go through.

The condition CRPS ‘Complex Regional Pain Syndrome’ as it is now commonly known as was originally named CAUSALGIA and described by Silas Weir Mitchell in 1872 during the American Civil War, when solders were not healing from their wounds but actually getting worse. It wasn’t until the 1940’s, the term Reflex Sympathetic Dystrophy came into use. Now days it is commonly named Complex Regional Pain Syndrome Type 1 or 2. I have type 1. Type 1 and 2 are basically the same, they both seem to have the same characteristics as each other. The only real difference is that Type 1 develops following an event such as a sprain; break in the limb or from an operation. Type 2 develops after a nerve injury.

There is no real test that you can do to diagnose RSD/CRPS, really you can only observe through the symptoms and there is no other condition that can account for the degree of pain and dysfunction that RSD/CRPS sufferers go through.

What is RSD/CRPS?
Trauma is the main contributor of RSD/CRPS, meaning if you have a sprain or an operation on your limb, that’s how it can set in. It is reported to be one of the most difficult and painful conditions to treat. It is a syndrome that consists of BURNING PAIN, MUSCLE SPASMS, LOCAL SWELLING, INCREASED SWEATING, SOFTENING OF BONES, JOINT TENDERNESS OR STIFFNESS, RESTRICTED PAIN MOVEMENT, CHANGES TO THE NAILS AND SKIN AND RAPID HAIR GROWTH ON THE AFFECTED LIMB.

The pain of RSD/CRPS is continuous and can get worse with emotional stress, moving your affected limb or touching can become intolerable. Eventually after non-use of the affected limb, the joints become stiff and the skin, muscles and bones may shrink. RSD/CRPS can really strike at any age but is most common in the ages of 40-60 and for unknown reason RSD is diagnosed in women twice as much as men, but it is increasing in young adults and teens. It is said that some research has proven that if Vitamin C is administered after an injury, it may decrease one’s chances of developing RSD/CRPS.

DIAGNOSIS
There are 3 main parts that are in stages, and they are:

STAGE 1: This stage can last 2 to 6 weeks but may last up to 6 months. At the start the skin is warm, red and become dry. Towards the end of this stage you skin can become cold and sweaty, and becomes a mottled colour of the skin with patches of pale pink on a blue and pink background. Hair and nail growth may start to occur. This is the stage that doctors try and use nerve blocks as they may be able to stop it or have it go into remission. The nerve blocks are rarely used past this stage.

STAGE 2: This stage is characterised by dystrophy. This stage occurs after 2 to 6 weeks or even 3 to 7 months after the initial injury and can last from 3 to 6 months. The skin can also become shiny in appearance and can often be cold, pale, grey and mottled. This is due to the vasoconstriction in the affected limb. Hyperhidrosis (abnormal excessive sweating) is a usual sign at this stage. Joints may become thickened because of stiffness and muscle wasting is a contributing factor. X-ray’s can also show patches of osteoporosis. The pain is still continuous, and this is where the dystrophy can diffuse (to spread).

STAGE 3: This stage is about 8 months after the initial injury. It is known to be characterised by irreversible marked tissue changes. The skin appears smooth, atrophied, glossy, pale, or cyanotic and the skin temperature is decreased. At this stage the changes are usually complete and irreversible. The joints become weak with limited range of motion. Bones may begin to show marked decalcification. It is also said that there are no other conditions can account for the degree of pain and dysfunction.

A delay in prognosis can result in severe physical and psychological problems can start, but in saying that diagnosis is complicated but in some people, they can improve without treatment if caught early.

TREATMENT
Patients with RSD/CRPS are treated with nerve blocks, pain medication such as Fentanyl patches which administers morphine into your blood and replaced every 72 hours (3 days). There are other patches that can be described as well. There are many other treatments that can be used like, Physiotherapy, Tens machine and nerve blockades but realistically the blockades really need to be administered within the first 3 months of being diagnosed for them to be of really any benefit. Acupuncture is starting to makes its mark in the race for alternative medicine for pain relief. There are also implants that directly stimulate the spinal cord through surgically implanting the Neurostimulations into either the epidural space or directly over the nerves themselves, these nerves are located outside the central nervous system. There are also other implants such as drug pumps that deliver pain medication directly on the cerebrospinal fluid. There are also gels which can be of some benefit. Such as ELMORE OIL and FLEXALL which I would recommend both of these products. I currently use Flexall but have used Elmore Oil which is very good too and it is made from all natural ingredients and made in my home town of Bendigo Victoria Australia. Kyle Vander Kype (Australian Olympic Athlete) also endorses Elmore Oil. Voltaren gel is also another rub that can be used.

A lot of patients that suffer with RSD/CRPS also get treatment for depression, which is common in sufferers due to the dibilating impact it has on them. Not being able to perform their normal duties at home or at work also impacts on them, this is why a lot of patients fall into depression. Trying to deal with everyday issues with family and the world as well as being in so much pain just becomes over whelming. I currently use ENDEP which is a drug for depression, they used to use this drug many years ago and is starting to make a come back to treat sufferers of Fibromyalgia which I also have, due to the RSD. This drug has a pain block in it and I must say is not too bad. I have been on it for about 5-6 weeks. But in saying that, what is good for one sufferer may not work on another.

Myself I have been through these episodes a couple of times, it’s like you feel like a failure as you cannot perform your normal house hold duties or even having those family days that you once loved seem to become a burden as you know you are not going to enjoy yourself due to the pain and you make every excuse not to go, which in turn disappoints your family. It also sometimes feel like you are a burden on your family and friends, as you need help in everyday things but you don’t want to ask because you don’t want to burden them.

WHAT I AND OTHER SUFFERERS GO THROUGH EVERYDAY
I personally go through so much pain everyday, by the end of the day I am worse, with stabbing and burning pain which is really debilitating and exhausting. Showering with washing my hair becomes a task just in it self due to the pain of trying to get my arms up there, I have to take breaks in-between washing my hair due to the pain of it all. Even driving can takes its toll on a sufferer of RSD. I have had to put a steering knob on the wheel of my car for driving due to RSD in my left arm and shoulder. My licence got suspended until I did all the driving tests and my licence has known been changed. I am only allowed to drive an automatic car with power steering, and I am to use my steering knob. For those who don’t know what they are, they actually look like the steering devices on a fork lift, nothing special just helps with driving and resting my left arm.

A lot of sufferers of RSD/CRPS have no support; either the family or friends don’t believe them, not through ignorance but through lack of knowledge of what this disease is really like.

My condition is bitter sweet, I have this disease which is the bitter side but I do have fantastic support of my family and friends and I really truly feel blessed for that, as a lot of other sufferers don’t have this, they either get swept under the carpet or they fall through the cracks and are forgotten about. My one wish through all this is for that to change. We need to get the awareness out there, that this disease is real, it is not in our heads and we want our stories to be heard.

PAULA ABDUL AND RSD
Paula Abdul, singer and judge from American Idol and has had RSD since she was 17 due to a cheerleading accident, she was also in plane and car accident which has also led to numerous back surgeries which has also contributed to her RSD. Paula has said that the publicity has raised hopes that the condition of RSD/CRPS may finally get the medical recognition that it deserves.
Paula has suffered this condition for 25 years and has now said that she is doing so much better due to the right medication she is having. Paula was only diagnosed with RSD in 2005.

SUMMARY
So we have learned that RSD/CRPS is a very difficult condition to diagnose and treat, and that the earlier that it is detected and treatment administered can lead to the healing process of this debilitating disease. We also have learnt that the more that this disease is publicised the better other people will learn about it and hopefully have a little bit more compassion for the sufferers of this disease, and that it would get the medical recognition that it does deserve. We know it can spread to other parts of the body and the pain is worse than the initial injury. So if you injure you finger it can spread throughout the entire hand and arm and even spread to the other arm or your legs.

Web sites
I have chosen some web sites that may be beneficial to some sufferers or family and friends of sufferers who would like to know more about this debilitating disease.

A Dr. Colantonia has started a web site for pain sufferers which is: http://crps.physiciansforpatients.com/

He has given up his time to answer questions about RSD and other Chronic Pain Disorders.
RSD Awareness: this site will give you all the RSD chat rooms and RSD support groups.

There is also Facebook which I am a member of and there are so many sufferers of RSD on there and we have started our own little support community which is great as the more support you have the better off you will be.

Now there is a lady by the name of Coralie Wales, she is President and a founding Director of Chronic Pain Australia and she travels around doing seminars for people who have Chronic Pain. She also talks to health and insurance professionals. She has recently done a summit in Melbourne and you can see that interview on her website coraliewales.com

.

Let me say this woman is amazing. I would recommend you go and check her out her websites and join in her newsletters. I wrote her a letter stating who I was and the condition I have which is RSD and she replied and she is publishing my letter into her newsletter, so that is exciting. She is a big believer that us the injured should be in charge and to me that is really scary, I have been pushed and pulled around for nearly 7 years now and told to do this and do that, how do you possibly turn round and say ‘STOP’, I want to control this now. But she teaches that. I wish I had of known that she was in Melbourne as I would have gone to see her, but maybe there will be another time. And hopefully one day I may even get to met her personally and just thank her for helping every person get through Chronic Pain.

So in closing My Story, I really want to encourage you all to check out these websites even if you are not a sufferer of RSD and other chronic Disorders. In doing so you are going to have a better appreciation of what we all go through on a daily basis. It is not easy but we try to get through it the best way we can, and the only way we can do that is with support from our loved ones. So when next time someone tells you they have RSD you might be able to say; “hey I know about that disease and how debilitating it is”, instead of rolling your eyes like you do now. You just might save a life that day. Your little bit of support will go a long way.

So my name is Belinda Miles, I live in Bendigo Australia and I am a sufferer of Reflect Sympathetic Dystrophy. I am letting my story be told, and I am going to stand up and let my voice be heard.
Thank you for reading My Story and I hope I have changed your view and outlook with people that suffer from Reflex Sympathetic Dystrophy (RSD), and other Chronic Pain Disorders.


"Who can I trust"
My whole body trembles,
and I can't stop the pain,
My body won't work,
but my mind is still sane.

'Why is this happening',
'Why me I ask'?
'Well why not',
'Why not', it asks?

They say I now have Sleep Apnea,
What else could go wrong,
just one more worry,
And another verse for the song.

'Why are you so special,
That I can't attack you',
Although I know you don't want me too,
'But get used to it,
As I am here to stay',
'And you are only going to get worse, day by day'.

'Stop it'!! I say,
'Just take it away,
I can't bear it no more,
take the pain away'.

My eye's are leaking,
I don't know what to do,
I don't know where to turn,
Or who I can trust,
I am just not sure,
Oh man I am in such a rut.

So how do I escape this?
When the pain is so bad,
Who can I run to,
How can I trust?.........


Carol R.
Cowiche woman with painful disease hopes to spare others pain.

Carol Rains clutched her husband's hand tightly as she waited nervously for her turn. She looked anxious and maybe a little tired as she smoothed a wrinkle in her jeans.

But not sick.

John Rains was the only person in the room who knew that the right hand he was squeezing is the only part of Carol's body that isn't tortured by a deep, burning pain at the slightest touch or breeze.

Most of the people in the audience turned their attention elsewhere as the Yakima City Council moved to the proclamation section of its March 7 agenda.

But Carol leaned forward in her chair, ready for her long-awaited chance to have a roomful of people acknowledge her eight-year war with chronic pain and the people who don't believe it exists.

John looked at her and smiled, grabbing for his camera as Mayor Dave Edler asked Carol to stand at the lectern while Councilman Ron Bonlender read a proclamation Carol co-authored about a scarcely known disease called reflex sympathetic dystrophy.

"Whereas RSD is a progressive neurological disease that has constant, severe burning pain as its main system," he read ...

"Whereas many health-care professionals mistakenly believe RSD is a psychological condition rather than a physical one ...

"Whereas early recognition and proper management of RSD may lead to the prevention and/or the reduction of the severity of this potentially catastrophic condition ..."

And as if it were the easiest thing in the world to do, it was officially Reflex Sympathetic Dystrophy Awareness Month in the city of Yakima.

To almost everyone, it means nothing.

But to Carol and the few people who have believed her since she was diagnosed with the controversial disease seven years ago, it means everything.

One Friday in July 1998, Carol was moving bundles of wood at Can Am Millwork (now Alexandria Millwork) in Moxee, when she felt a tear in her right knee.

After a doctor's appointment the following week, Carol began physical therapy. In November, she had surgery to repair her torn medial meniscus.

But even after the surgery, the constant ache and occasional tight pain in her leg continued to worsen, forcing her to quit her job within a month.

"I started wondering, 'What is this?' " she says.

Doctors in Yakima and Seattle told her it was impossible for her to be feeling pain. They told her it was all in her head and she should continue physical therapy, she says.

But the situation grew more strange. Driving her two teenage sons to school, she began to notice that when the keychain dangling from the ignition of her Ford Bronco would brush her thigh, it would set off intense pain. More and more, the skin on most of her right leg became sensitive to touch and temperature.

One year after her injury, she demanded that her doctor take a closer look.

An MRI at Orthopedics International in Seattle in November 1999 showed that her knee was completely normal. The tear had healed cleanly.

The same day, after examining Carol's leg and hearing about her symptoms, Dr. Edward Khalfayan diagnosed reflex sympathetic dystrophy, or complex regional pain syndrome, in her right knee.

Frustrated because she'd never heard of the disease, Carol asked her local doctor's nurse to collect some information for her about RSD.

A few days later, the thick manila envelope full of Internet printouts arrived.

She read only a few pages before her frustration turned to fear.

RSD, she learned, is triggered when the nervous system malfunctions following trauma to the body. Doctors aren't sure why, but when the injury heals, the local nerves don't stop sending pain signals to the brain. In many cases, especially without early treatment, the condition can spread, causing chronic burning pain all over the body.

The Reflex Sympathetic Dystrophy Syndrome Association estimates that between 200,000 and 1.2 million people in the United States have the disease. The numbers are difficult to track because most patients and many health-care providers are not familiar with the disease and symptoms vary from patient to patient.

The disease affects women three times more often than men. The average age of diagnosis is 42, but it has been found in children as young as 3.

Carol was 36 — and terrified by what she read.

"I started looking over it and I started crying," she says. "And I cried and I cried and I cried."

She was still in tears as she shared the information with John when he got home from work that night.

"I think we both knew from that moment on, our lives would never be the same," he says.

For as long as she can remember, Carol had gone camping or hiking nearly every weekend.
She grew up in the Yakima Valley and knows the trails in the surrounding hills as well as she knows her backyard.

But her days of walking several miles at a time or sledding with her children were over. With the eight medications she was on and the degenerative nature of RSD, the activities she had loved became nearly impossible.

Just before her injury, Carol, John and their sons had moved seven miles from the summit of White Pass to manage Camp Zarahemla, a resort owned by the Mormon church.

In the winter months, when she was in too much pain to drive, she watched her sons walk the 21/2-mile driveway to the bus stop in more than a foot of snow.

"You go through a lot of depression," she says. "A lot of life's not worth anything anymore."

After a few years, the family moved to Cowiche and had to give up two of their dogs because Carol could no longer take care of them while her sons were in school and John was at work.

She was terrified as the pain slowly spread from her right leg, to her left, and then to her left arm.

She could no longer play with her grandchildren without someone telling them to be careful not to hurt her, as if she were the child.

"I knew it was going to be harder on her, not being able to be active around her grandkids," recalls Carol's daughter, Sharon Horn. "There were plenty of days when she could do nothing but sit on the couch and cry because she hurt and there wasn't anything any of us could do to help her."

Among pain doctors and patients, RSD is known as the suicide disease because, for many, that's the only logical escape from the pain.

But Carol still had too much to live for.

Doctors will probably never know whether it was her initial knee injury or the surgery that triggered Carol's RSD.

Either way, because she was injured at work, her insurance claims were handled by the Washington Department of Labor and Industries. And by the time of her diagnosis, she and her Yakima attorney, Darrell Smart, were already fighting for the benefits they believed she deserved.

In the meantime, Medicare and John's work insurance were picking up the tab for most of her treatment.

When Carol was diagnosed, Khalfayan told her that if she received a series of sympathetic nerve blocks — injections of medicine onto or near nerves — there was an 80 percent chance that the pain would stop and she would go into remission.

But the department never approved the blocks.

"We try really hard not to pay for things that haven't been shown effective," says Robert Nelson of Labor and Industries' communication department. "We also only really treat pain when it hinders a worker's ability to recover."

Before accepting that Carol had RSD, the department paid a panel of Independent Medical Examiners — doctors the state hires and certifies to examine patients who have filed workers compensation claims — to evaluate her condition.

Though all six of the doctors Carol had seen on her own confirmed the original diagnosis, four of the five IMEs said she did not have RSD and that she didn't appear to have any physical limitations.

Despite the numbers and the working arrangement the doctors have with the department, Nelson says they are impartial experts.

"They really don't have a dog in the fight in terms of whether they want to side with the employer or the worker," he says.

But Smart doesn't buy that. Some doctors, he suspects, side with the department just to make easy money.

"I've had experts for the department who say they simply don't believe the condition exists," he says. "At any point in time, you're only a medical examination away from being turned away."

And Carol was. After years of going back and forth between doctors hired by the department and her own treating physician — pain specialist Dr. John Baumeister in Edmonds, Wash. — in March 2003 Carol heard Labor and Industries' final decision.

The department stopped her benefits and gave her about $10,000 to compensate her for a permanent 10 percent disability in her lower right leg.

"When I finally got $10,000, I was done with it. I was just so glad to know that they would be out of my life," she says.

But Smart encouraged her to stay in the ring.

"He told me, 'Carol, you have a good case here. This isn't right, you can do more.' "

So he filed an appeal with his own money, Carol says, taking a chance because he was certain he could win the case.

And in October 2004, Carol received a copy of the Board of Industrial Insurance Appeals' decision.

"I had no idea when I read it what it was going to say," she says.

It said that L&I was wrong. Carol's injury was worth more, she had RSD and the department must reinstate her benefits.

In September, Carol met Cynthia Toussaint, the only other person she's ever met face-to-face who has RSD.
Toussaint, a Californian who has had RSD for 23 years and has fought relentlessly and successfully for recognition of chronic pain diseases in her state, spoke in Yakima for Chronic Pain Awareness Month and met John and Carol afterward.

Now in a wheelchair, Toussaint, who is running for a seat in the California Assembly, got RSD following an injury she suffered when she was a 21-year-old ballerina.

It took more than a decade for someone to diagnose her correctly, and for years people who didn't understand the disease told her she was making up her pain.

"We can't imagine cancer, either, but we've been taught about cancer, so we believe it," Toussaint says.

When she met Carol and heard her story, she was impressed by her eagerness and encouraged her to promote RSD awareness locally.

"I always get very sad when I meet someone who's a nice person going about her lovely life and this disease came along and took so much," Toussaint says.

Sometimes it really gets to Carol, too. She and John celebrated their 20th wedding anniversary last week.

"I'm thinking about what our dreams were 20 years ago," she says. "We talked about when our kids were grown, buying a motorcycle and cruising around. We can't do that."

Instead, they talk about how they might have to get Carol a motorized scooter because there might come a day when she won't be able to walk anymore.

"Hopefully," she says playfully, "by then they have purple scooters with four-wheel-drive."

Smart is still working toward getting Carol a permanent disability pension from the state. L&I pays for her medications and her doctors visits to Seattle. They still haven't taken responsibility for the spinal cord stimulators she had implanted in 2003 and 2004 to make her pain more bearable.

Last year, when she had a routine root canal, the RSD spread to her face. Now it covers her whole body except the right arm.

"A lot of people talk about how it's nice to feel a cool breeze," she says. "I used to love that, too. Now it's the last thing I want to feel."

For all Carol has lost, there is one certain gain:
Persistence.
Because when you're sick in a way that no one can see, it is easy to be brushed aside. And over the years, Carol has learned that she cannot be silent because too many people in her condition are.

So although she had been shaking with her fear of public speaking as she waited in the Yakima City Council chamber, her voice was rock steady as she graciously accepted her signed proclamation.

"RSD is curable if caught and treated early," she told the council calmly. "If left unchecked, those afflicted will endure a lifetime of burning pain, disability, depression, and the list goes on."

Those are the things that Carol will feel her whole life.