RSD/CRPS Doesn't Own Me

RSD Angel Stories

These are REAL RSD Angel and RSD Caretaker Stories! To share your Story, email it to RSDCRPS@Gmail.com and spread Awareness about these strong spirited battles! At the bottom of the page is a place to put comments. Please be respectful and know that we are here for each other!

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

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 diloted 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 taking over most of my left side and all of my left leg.

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.

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!

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. 

              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 volumn 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 acccident 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 theraphy appointments, doctor appointments,which they tried so many differnt 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 ,shouldnt 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 didnt walk down the isle at my own wedding and didnt 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 wouldnt 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 werent 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 didnt 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 wasnt like most mothers and  wasnt 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 couldnt.I was falling much more, barely able to walk even several blocks,alot of inflamation 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 couldnt belive what he saw, said i shouldnt 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 couldnt 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 theraphy i was doing,there was discoloration if bent,stood or tried to walk on them,alot 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 couldnt handle having to just sit there. I couldnt 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 wouldnt remember me ever walking.I ended up being sent to neurolgist,whom did many test, in the end to tell me he had bad news and diagnoised 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 isnt the same,we do not do theatres, 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 cant 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 cant. They see what i go through everyday and they know they cant 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 tredging 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 noone 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 dont 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 edure 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 inconveinent 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