Comments from Signers
I have Complex Regional Pain Syndrome and am told I am only 12% disabled.
I have Reflex Sympathetic Dystrophy and am on Workman's Comp
"Those who suffer from chronic pain should be respected and gain the disability rating they deserve. I am one of them. Please hear us and act NOW! Thank you.
My daughter suffers from Complex Regional Pain Syndrome. She is disabled due to this illness. She deserves better!!!!!
"I have Reflex Sympathetic Dystrophy and Fibromyalgia. I am 21 years old, and I have had chronic pain for nearly 8 years."
"I have Complex Regional Pain Syndrome Type II. All of us that suffer from chronic pain deserve, a more fair Disability Rating. Please hear our voices now!"
I also have RSD and not getting any help and AISH thinks im not disabled enough
"I have RSD, of course you can't tell... I wouldn't wish my pain on anyone!"
"I have been afflicted with this horrible disease since 2001. I worked for 7 years struggling with the monster RSD the whole time. After visiting a neurologist she insisted I would never feel any relief if I did not quit working. After applying 3 times I still get no money and now my FAMILY is forced to SUFFER TOO. This has GOT TO CHANGE, my wife didn't marry RSD/CRPS, why does the government make her pay for it? I got RSD/CRPS from a AMA certified doctor, yet nobody seems to care or even want to help me the patient.....what is the certification for? What is insurance for? What is disability for? PLEASE HELP US ALL!!!!!"
I suffer from RSD which causes me a great deal of hardships.
"I am 50 years old and was diagnosed with RSD 2 years ago. I am being forced to work even though I can barely walk, some days because I am not eligable for disability according to what you stipulate as disabled. I would also have to wait ONE FULL year without work to receive one penny. I have no one but myself to reply on and if I was totally out of work I would have no place to live and no health benefits to get my needed medications to live. RSD is REAL, we hurt, we cry and we are in pain. WE need help !!"
"Work related accident, but God is still good."
My daughter has RSD!!!
"Live with chronic pain every day so bad I cannot walk upright, or walk a store anymore to buy my groceries."
I have RSD and I am having to fight work comp to get disability & medical treatment!!!
"I have had RSD for 15 years and am on Workman's Comp. I am fortunate and am still able to work but it is getting harder every day. I teach handicapped pre-schoolers (which is how I got hurt) and this requires a lot of bending and reaching. I have 2 spinal cord stimulators along with the RSD in my back and both legs. I am trying so hard not to go out on disability but if I have to I do not want to receive less than I shoud just because my disability dose not fit into a certian box on the form. I have lost so much in my life because of this disease please don't take away something else. Thanks, Kim"
"I suffer from Chronic Pain and it took forever to receive my SSD. When I did get it, it was based on something besides by chronic pain which is the worse of my illnesses. Their needs to be a category for chronic pain."
I am one who lives in chronic pain daily. I am having to fight to try and get my ssd on other illnesses. They are need to except Fibromyalgia as one of the conditions that you are disabled.
I think this is discrimination and a violation of the ADA.
"I have RSD and it took three years to get on disability, even though the judge looked at my case and wondered why I was even before him. It's not right that pain isn't given as much credence as other disabilities."
"I'm adding to this because of 53 years of age it appears as though I have to give up work in part because of an accident and in part because of the RSD. The Social Security Department appears to have a certain set of forms or standards that they go by and if you do not fall into their nice little cubbyholes oh well too bad how sad it tonight. The fact is that I do not want to be on Social Security I want to be working however I cannot control the pain I cannot control what the medications due to me. Just for one day I would like these people who deal with workers comp and Social Security to go around with the pain that we suffer see how they handle it. When they could be sitting at a desk working and suddenly it is as though your neck is a five alarm fire or your arm is being stamped with many daggers. All you're having a pleasant weekend with your family and then your neck feels as if 1000 swords have been processed through it each with hot molten tar on the blades. Or how would they feel when because of not being yelled to use one arm due to RSD the the other arm becomes painful with carpal tunnel etc. and so when left alone your no better than a baby who cannot open their own cans of food or butter a slice of bread etc.
Having dealt with the Workers Compensation system as well as the Social Security Admin I know the hardship it causes first hand as well as the unsettling differences we face in the process of our pain and disabilities . Change is drastically needed.
"My Daughter suffers so bad with this. 27 years old with a cane, cast on arm and back brace!!!"
"I was hurt at work when I was not even 30 and had trouble keeping jobs because of the pain--Social Security laughed at me and I had numerous jobs I lost because I could not deal with the pain. When I was 52, I finally received my disability. After appealing 3 times!"
"I have CRPS, caused by a Worker's Comp injury. What a tortuous path through Worker's Comp. It took several long years and was extremely stressful and caused me even more pain. We need a fair Chronic Pain Disability Scale! I am still unable to work - 6 years later!"
"I'm a fleet service clerk for a major commercial airline and I have suffered several injuries on the job and Im being called a drug addict and a liar, and not being given the proper treatment I need. I am suffering many hardships I have never imagined and Im not getting any help."
"Although this does not affect me, I do understand how it affects others because I suffer from chronic pain caused by a disease called Complex Regional Pain Syndrome. This disease causes dibilitating chronc pain. The microscopic nerves near the skin of CRPS patients are damaged, but few doctors do the test that could prove the patient has these damaged nerves. The only visible sign of CRPS is chronic pain, swelling, color changes, and temperature changes. CRPS patients otherwise look fine. But the pain is so severe that many of us cannot get out of bed 2 to 4 days per week. Yet, we are looked at as exagerating our symptoms or faking them. Until doctors are willing to do the tests that would prove the damage done to our nerves, chronic pain patients should be evaluated based on the activities they can or cannot do, not on how they look."
I was injured at work in 2007. I was diagnosed with RSD in 2008 and diagnosed as full body RSD in 2010. I am fighting with WC over reasonable treatment. We NEED to be recognized as disabled sooner. PLEASE HELP!
I have experienced the deliberate delays and disapproval from workman's comp myself... we need HELP!
friends and family
I have lived with RSD for 10 years.
"I have Rsd..I would like to know when the day comes that I can no longer be able to push myself to work, that I can be covered and not be hassled to recieve what benefits are due to me. My Rsd is system wide now. I hate the day when I cant go anymore. PLease make our voices heard."
Young family member has rsd.
I had an injury in February 2010 which resulted in RSD/CRPS. This is a terribly painful disease and affects those of us who have it not only physically but mentally as well. I have been denied WC as well as SSD and have had to hire a lawyer to help fight these denials.
"I AM a chronic pain sufferer and I haven't been able to work since '02. I only get $500 a month from Soc Sec, I'm single and live alone. That is my ONLY income. Please change the scale so that some of us can have hope of a future again!!"
I'm signing b/c I have severe RA (Rheumatoid Arthritis). It is a terrible auto-immune disease that inhibits my life tremendously. I have to take a handful of meds every morning & night just to be able to function. I still cannot open jars or doors. And I'm only 31.
"I suffer from constant pain. I have additional disabilities, but my pain is minimized. How can someone who is in horrible pain focus on their work and be an effective employee? Why would anyone hire me if I am in bed for days at a time from migraine pain? If I can't lift above my shoulders due to pain, or maybe I can do it today, but if I do, I will spend two or three days in bed in agonizing pain from doing it. I've had a quadriplegic friend tell me that she thinks it's unfair that people are so harsh with me, and easy on her because her disability is visible- mine isn't. She is not in pain, and people bend over backwards to accommodate her; but they look at me and accuse me of lying about my disability/pain!
"I have had RSD for 10yrs people in chronic pain are treated different than people with other health problems such as cancer,heart disease and such we are the same not different we deserve the same respect as these people get"
"I have pain everyday, I can't walk without assistance. I have denied didability after I applied a year ago. Now what? Can't pay rent, can't feed my kids, can't work. What am I suppose to do?"
I have RSD/CRPS and can't take my pain meds duringf the day because I HAVE to go to work for the paycheck. I am in tears several times a day in the bathroom because the pain is SO severe.
Just because we are people suffering with disabilities that you can't see doesn't mean we should have to prove what is wrong with us harder than someone who lost a finger.
"I have RSD & I want to know that when the day comes that I can't push myself through the pain to go to work that I will have the support all people with disabilities need & deserve, not be treated like an unwanted, lying, untouchable ""thing"". I love my work & hope that day never comes but with no cure in sight I know the odds are against me & so many others."
"My mother has had fibromyalgia for twenty-three years and I have had it for ten. Luckily she has my dad to help take care of her so that she does not need to work full-time. I do not have such a luxury. Instead I cry myself to sleep every night from the additional pain that I got for working an an 8-10 hour day. I love to work, but it does not seem worth it to put myself through all this pain just to keep working. But I cannot get on SSI because there is no way I could live on what I would earn with SSI."
I am disabled due to a work comp injury and received a very low rating.
Hi my name is Sylvia and I live with RSD
I fell and now will be living with CRPS/RSD for the rest of my life. The pain is real!
"I live with chronic pain, and no one seems to understand how much pain I'm in. There are days I can't get out of bed, and all I hear is ""stop being a baby, shake it off""'
"I have chronic pain due to migraine and am currently on disability, receiving a pittance each month."
I have RSDS/CRPS
"I have RSD. I was actually diagnosed in 1998, I haven't been able to work since then. Most days I hurt too much to move but stopping is not an option. We need this voice."
I myself suffer from chronic pain..it can be debilitating at times.I do continue to work..but what if I couldn't???
"Because I am disabled and receive disability; my friend who is worse off then I am, can no longer work, has received no help."
RSD is a very real and extreamly debilitating disease
Daughter has RSD/CRPS since 2007.
"I suffer from RSD and it took me 2 years to get my disability status because of this disabling chronic pain. What people don't understand is that even if you can work partially, people don't want to hire you because of the limitation - but if you don't tell them you lied. This disease is not easy any which way you put it. Unfortunately the person with the disease suffers more ways than 1."
I was diagnosed with RSD in 1996 and have been denied disability every time this needs to change please
My Daughter suffers from RSD and has chronic pain daily!!!
This is such an upredictable disease! we need to show that getting the respect of disability mainly because we see many specialists. Different docs more money!!!
Anything with pain and worker's comp needs to be changed because the laws are archaic.
"To help my granddaughter's pain, and all other people in pain"
I have RSD due to a work comp injury.
"November 1999 I was diagnosed with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome. At first only my right knee was affected, now both of my legs, my left arm and the lower half of my face all are affected by CRPS/RSD. You can not look at me and know I am disabled, my pain and I have good days, bad days, and worse days. Nights were I've cried all night because of the horrible pain. I can only sleep 2 - 4 hours a night. I battled WA State's WC for 10 years, had to go to an inpatient pain clinic for 6 weeks, I finally won. In 2003 I was told by a Judge I was disabled and would receive my SSD. For those of you still fighting, hang in there! Take care of YOU"
I have RSD/ CRPS since 2006 from the violence of a client at work W/C and employers should be held more accountable I'm still fighting them We need HELP not a fight that last for years on end
Because I have seen many suffering with no where to turn. Look at a few cases of RSD and/or CRPS....and the level of pain that they feel each and every day....24/7....There should be adequate finances so they can at least have that one thing off their insurmountable list of pain and triggers.
I suffer from chronic pain issues
"I have chronic pain from RSD."
I have Complex Regional Pain Syndrome.
"As a spouse of CRPS sufferer who endured this ""system"" both NY workers comp and SSD there needs to be sweeping change! My family was left in financial ruin and still is from the inequality of the system in its current state."
I have RSD an cannot walk. It is a daily struggle to live! I would love nothing more then to be at work an not have to suffer the pain of RSD.
"I am signing this because I have had RSD since having elbow surgery in 2009 and not being able to return to work because of it. I'm still waiting for my disability to be approved, and to get the benefits that I have worked so hard to get when I needed them. Now that I need them, it seems we have to go to extremes."
I have severe debilitating chronic pain. Things must change in our favor. Faking the pain is not an option...our doctor knows.
Because I suffer from Chronic Pain
"I'm 30 with Small Fiber Peripheral Neuropathy. I may lose my disability in April because I was ""expected to improve"" when in fact, the pain is only worsening."
"Was injured in 08, have been diagnosed with Rsd. Have lived in pain for 3 years and have lost almost everything because I don't get WC or SSD. Not fair, but keep fighting to get help."
I have Peripheral Neuropathy and already have SSD but there are many people who are unable to work and have not yet received SSD.
"I have RSD it is excruciating at times along with tremors,soars,limping,pain.I am signing to let everyone know it is unbearable and most days no relief along with depression."
"I have RSD/CRPS and live in Chronic Pain which makes life at times unbearable. I am disabled, find doing housework hard, but do it all the same to keep me mobile. I need enormous amounts of medications which cost us money which we can ill afford. I need help to do things, but cannot afford to employ a home help. We, who all suffer from this disease, need much more consideration & help from your Department. "
"It took me three years to be approved for ssdisability - because my disease does not follow the ""written"" guidelines. That was three years where I could have had treatment that would have enabled me to have a better life than living with the debilitating and constant (24/7) pain that I experience today. I worked hard and lost EVERYTHING I ever worked for - this should not be allowed to happen!"
"Because this should have been sorted out a long time ago, should not have to do it this way ! I am have CRPS myself and know how bad it is and wish people would hear us when we say how bad it is."
Because I am a patient under Doctor's care with CRPS.
I have RSD. The day is going to come where I will not be able to work anymore and I want to make sure I have the benefits to take care of my family.
These scales were developed long ago. We have since found and proven many more disabling conditions in the medical field. It is time these scales were updated.
I have a 17 yr old daughter that is full body RND with internal issues. I fear what her life will become.
"i have lived with peripheral neuropathy for over 10 years. it has changed my life dramatically. i can no longer do the things i used too do, i have to see what the day brings before i can make any kind of plans. i work a ful time job as a nurse so i am on my feet all the time but i forge ahead as i live by myself and i am sole support for this home."
"I recently got RSD/CRPS in my foot from an outpatient surgery. I'm still trying to be a high school English teacher. Not only can I barely walk, but the pain is so bad that I can't put in all of the extra hours required to grade essays and create powerpoints/lessons. When in the classroom, I'm in so much pain all the time that every little sound makes me agitated and mean - I can't walk around the room and help my kids anymore. I've become a 'bad' and infeffective teacher because of this condition, and the job I used to love has become torture. To teach and monitor teenagers requires a great deal of mental focus, energy, and alertness... which is not possible when it always feels like a bowling ball just got dropped on my foot."
Dianne Benitez,Mt. Prospect,IL,2011-12-10,
My son had suffered from RSD 2 years ago. It was so awful to watch him suffer and know that there was nothing that I could do to help him. We are extremely lucky that he is in remission. We pray that everyone suffering from this disease can be relieved of the pain.
Rebecca Prudhomme,North Branch,MN,2011-12-10,
"I am signing because I was diagnosed with RSD/CRPS after a work injury to my back over 15 years ago. I have had 3 back surgeries, two fusions and a disk replacement. I am waiting for approval for a spinal cord implant. Until then, I am not approved to work by my doctors and surgeon. "
"I have RSD. I was diagnosed following a total knee replacement Dec. 2008. I had owned a very successful insurance agency for 13+ years yet had to sell due to the RSD getting worse and side affects from the medications used to treat RSD. I was my own liability. I have always been a determined individual taking on challenges of all sizes. I am now 41. My knee replacement prosthesis has a proven history (see Zimmer Nex Gen Knee for all of the info. on Google for links) which is proven defective and not functioning properly. NO doctor will perform the necessary total knee replacement revision surgery due to how aggressive my RSD is. The RSD has spread. Every passing day, week and month, my knee pain is getting much worse and I am losing more range of motion. I seek out many doctor opinions, yet they all seem to agree, they cannot operate due to the risk of my RSD wreaking havoc on my body. I have been known to have a high tolerance to pain until RSD came into my life.
"Currently on disability for chronic fatigue. Disability continues to harass me. They are trying to deny my benefits! I have had doctors look at me & physical they say nothing is wrong. No MRI, medical charts, etc."
Kimberly Heath,Warner Robins,GA,2012-02-04,
"I have suffered w/ this tormenting RSD disease for 8 1/2, going on 9 yrs now..mine has already progressed to the worst stage and have to have help w/ EVERYTHING..all daily living activities, incl personal care and bathing..I am only 45 and cannot walk w/o a walker w/ wheels now, a lot of medicines incl. high powered pain medicines and this is a crippling disease....I will need a wheelchair next. I cannot work, cook anymore, dress myself w/o help, take a bath, where my church shoes or any shoes really (mostly bedroom shoes), or most my clothes...the RSD causes frequent lesions on my legs that get infected and 'weep' fluids/blood....the tendons, nerves, blood vessels, muscles, ligaments, and bones are deteriorating and it has spread in both legs, feet, and lower back, hips...I worked all my life till this disease set in and I didn't ask for it...I paid my share of SS taxes....my doctor EVERY MONTH is expensive along w/ many medicines to buy...RSD affects my ability to sleep normal, I have extensive insomnia and even laying down causes NO relief....we need help, recognition, respect, and support...an income to survive on, medical insurance, and shouldn't have to wait and fight SSA to receive benefits that we/I paid in......while I suffer, we are loosing things financially and can't survive...my medical bills and needs are astronomical....I can't get in or out the tub w/o help from a person, etc.....I used to enjoy life, garden, play w/ grandchildren, do activities, camp, etc..no more..can't anymore and can never work again..this pain is worse than cancer pain on scale and crippling my legs...it is progressive and RSD can spread to middle of body also, not just limbs, and cause major complications in major organs....some people have died from that occurring...I already have HBP and coronary artery disease also, along w/ RSD in both legs....HEAR OUR PLEA!"
"I have had RSD/CRPS for a few years now and I'm just now being diagnosed... I have lost countless jobs due to my disabilities, sever migraines, depression and more medical problems. I am constantly in the emergency room, hospital and doctors office throughout the week...it never ends! Its impossible for me to work and I'm tired of suffering and worrying about how to make ends meet to care for my son. He sees enough struggle with just me and he shouldn't have to worry about food on the table, and a home..It's time are voices are heard and we take a stand!"
Elaine Kent,Royal Oak,MI,2012-02-06,
I have chronic pain and I now understand what people with it are facing everyday. It really is hard to understand unless you have it. In hopes that this petition will change things for all of us.
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