Why Is It So Hard to Get Disability for Fibromyalgia?

disability for fibromyalgia

One of the many questions asked about fibromyalgia is whether this condition is a disability or not. There is no doubt that fibromyalgia pain can get so severe that it makes performing usual tasks difficult and even impossible. As such, patients often see their fibromyalgia as a form of disability, preventing them from doing the usual tasks like a normal person.


Why It’s Difficult To Get Fibromyalgia Recognized As Disability

In order for a particular condition to be recognized as a disability, the ADA or American With Disabilities Act has stated that it should cause an impairment that will substantially limit one from doing major activities in life. By this standard, it would seem that fibromyalgia belongs under such category. But the truth is, just like with anything else that requires government involvement, it is not really that simple.

When a condition is recognized officially as a disability, you are entitled to receive some benefits from the government. In addition, your employer(s) is obliged to provide you with reasonable accommodation. To prevent exploitation, the government has set certain rule and requirements which you have to meet for your condition to be recognized as disability.

Just because fibromyalgia is recognized officially as an illness does not mean that your condition will be. You must first prove that your condition and that it is preventing you from doing normal things in life. Unfortunately, this is not easily because of several reasons.


First, the condition will not leave any physical signs to prove that you actually have it. This means that you will always run the risk of being accused of faking the condition.  In comparison to another disease such as the Parkinson’s disease, patients shows visible symptoms and will usually find it much easier to get their disability request approved simply because of the fact that doctors can detect the symptoms.

Second, you need to find a doctor that can validate that your fibromyalgia is severe to the point of disability.  The doctor also has to be willing to provide the necessary documents. This requires a doctor who is very familiar to the chronic pain syndrome to do so. Unfortunately, there is not many out there.

How To Get Your Fibromyalgia Certified As Disability

The first thing you need to do is to look for a pain clinic with the right doctor.  Having a knowledgeable doctor to advise you on how to get your disability recognized is key.

Second, you need to gather all the documents required and provide all the proof that the government will need. This can take months of regular visits to various government agencies, which may be tough considering that you are already suffering from the painful symptoms of fibromyalgia.

In many ways, fibromyalgia patients are unfortunately not getting the support that they need. They are mere victims of a terrible disease, unfair laws, and not to mention the lack of public awareness.

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  1. says: Robin Bellows

    It took me five years to finally get disability. Evidently, my Fibro fog was more serious than I thought. I was diagnosed with severe cognitive and memory problems. I was diagnosed three times with fibromyalgia but it meant nothing.

  2. says: Amanda Rivera

    The main problem isn’t any of this. The problem is that the disability administration sends people to be evaluated by doctors who know nothing about fibromyalgia. Like, for example, the one I was sent to who said I was on no fibromyalgia medications, even though he clearly listed savella and naltrexone and three muscle relaxants as apart of my medications. Everyone knows savella is the only medication that’s been approved by the fda for only fibromyalgia and nothing else. But, I’m receiving no treatment according to him. This is the problem.

    1. says: Esther Scanlan

      I live in Ontario Canada. Do you know how I can order low dose naltexerone?? 4.5 is what I am looking for. Thanks for any help.

  3. says: Sarah

    I got disability for fibro but must say that it was probably mainly because Ive had back surgery and several bulging discs, thyroid disease and RA and that helped sway the judge. Be sure to note all the signs and symptoms…IBS for example, fibro fog as these help with a judges decision. Simply aching all over does not seem to matter in many cases but the many things that go hand in hand with fibro and overwhelm us will help make the decision sway your way easier.
    Also go ahead and get a lawyer…most of the cases are turned down the first time any way and a lawyer works on commission from the money you get when you finally are approved. I was turned down twice before getting a lawyer who finally won my case.

    1. says: Renay Jansonius

      I have ibs arthritis and cancer and fybromielgia and my dr isn’t really helpful. I qpplied but was denied. What can I do to get the disability insurance.

  4. says: Priscilla Sparrow

    My md could not get me passed so he used Carpal tunnel. You can’t work with out using your hands. It always wins. Sorry to say it was the only way for me to win, also took 5 years but I got back pay.

  5. says: Elaine Beattie

    I have had fibromyalgia for 14 years, i was properly diagnosed with it, for the knowing that i would be dealing medicals, and benefits. But when i was assessed for PIP it was a shrink that i saw, and i was pleased , as they read your body language, and i am certain thats why was awarded it?

    1. says: Rachel

      Hello Elaine, my name is Rachel and I was wondering about what you said as to talking to a and to help you with getting diagnosed with the fibromyalgia he noticed you body behavior and also said something about PiP. Can you help me with this info and help me know what type of other doctors that helped you find the fibro besides the shrink. I am having so much pain and i have problems with concentration , pain , and a few surgeries on my back I’m on a current pain pump oral meds and the pain just increases I have pain into my knees neck and deal with a little fog and I’m in the spot on having issues with everyday household chores and doing anything fun anymore such as going for walks with my husband and thats just to name a few I get 3 maybe 4 hours of sleep a night and thats if I’m lucky… Sorry for such a long email for help if you can any would help in many ways. Thank you for your time any help would be extremely helpful thank you in advance and god bless you

  6. says: Rose Ansell

    It took me three attempts and a reconciliation appeal to get High rate mobility and Standard rate care, even thou I cannot even cut my own dinner up, cannot prepare a meal without assistance or come to that wash my own hair.
    I have had decompression surgery on both shoulders and suffer from Chronic IBS

  7. says: Lynn Staples

    I am concerned when I am assessed for PIP, if I say about fibro fog am I likely to lose my driving license? Anyone been stopped driving due to fibromyalgia?

    1. says: Diane

      Yes! I had to stop driving. I got to the point of not trusting myself with what I thought I had done but went a whole other direction so scary!I would perseve what to do and ending in doing something different.

  8. says: Barb

    It’s funny they prescribe medications, tell you don’t drive on these ex: pain meds, muscle relaxers , antidepressants and nerves blockers. But you can go to work! Someone needs to tell the government it’s an Oxymoron. To boot your brain is a nerve system, if you take nerve blockers , your blocking your brain, but go to work !!

    1. says: Zoe

      I too have stopped driving of my own accord after forgetting one day whilst out in the car which pedal was brake and which accelerator. Frightened the life out of me as I had to just pick one on instinct. My memory is so bad now that I forget things instantly. If I don’t answer a text immediately then I forget I had it in the first place, I don’t even get that “”oooh, I remember now” bit. Nope, got nothing.
      I am a half person now. I used to be a shop manager, do spot checks on other stores. Now I have a commode, grab bars on the bed and can’t hold my arms up long or stand in one place. I broke my femur, no idea how. The strongest bone in the body and yet I’d not fallen, or tripped. I walked around on it for a month just thinking I was having a bad fibro flare. That sums it up really. That fibro can be so bad and we are so used to living with that pain on a daily basis that when we injure ourselves, to the extent that we require surgery, we just carry on regardless, muttering expletives along with the F word. FIBRO!!

  9. says: Tamara Mansanarez

    I’ve been diagnosed with diabetes, depression, anxiety, for 9 years now. Now I’ve been diagnosed with fibromyalgia and have had it for over a year and didn’t know it. Been fighting soc. security for 4 years been turned down 3 x now and working on an appeal with my lawyer now, but now everything is so bad that my hands don’t work like they use too, cannot open things, hold things like my phone my grand babies for more than a few minutes at a time, brush, wash my hair have to get help with them. Cannot stand for long to even cook FD or my family. I need help out of the shower/tub. My brain fog makes it hard to remember things and the meds I’m on make it hard to keep concentration on driving or a normal average day to remember something my husband or children have told me or asked if me to do for them, and the government gets to dictate if I am disabled or not. They don’t go through what I do everyday and it makes me mad and so frustrated!!!!!

  10. I have had M.S. since 1989..Fibromyalgia since 1994..also..diabetes..COPD..Asthma ..IBS..Osteo arthritis.(in both hsnds and both shoulders and both wrists..chronic depression(surprise !) And last week was told my Thyroid is over active! I STILL cannot get PIP because I smiled at the assessor..met her eyes and held a coffee mug..oh and I didn’t try to suicide in front of her! At the moment my pain levels are through the roof..mostly trigeminal neuralgia..wich totally stops me even thinking straight.Just what the blazes am I supposed to do? Desperation is an understatement.

    1. says: Tara

      For the trigeminal neuralgia my dad went to UVA to have surgery. He is a difference man now! You should check it out. It really helped him.

  11. says: Nadine

    I was diagnosed with fibro by two doctors, I have IBS, depression, anxiety, arthritis, two bulging discs, bilateral occipital neuralgia, memory and concentration problems, I get injections in my back, and my head, I have COPD, carpal tunnel, issues with my right shoulder from scar tissue, acid reflux, and some type of issue where my esophagus spasms. I got an attorney from the start. Since the injections help somewhat, and I haven’t tried to commit suicide, I was denied, fought it, and was denied again. They said my doctors were lying. The employment person even said that nobody would hire me with my health issues. I would love to see one of those jacka$$es have our pain for one week, they would act like they were dying!

  12. says: Jennifer

    Actually Lyrica is also approved by the FDA for fibromyalgia. Took that for a few months… unfortunately, it made me fall asleep at my desk, and I was a director of nursing. It also made me feel like I was drunk. This system sucks….we pay into it, then told we can’t have it cause “they” don’t feel we are disabled enough to get the very money we put into it!!

  13. says: Sharon

    I was very blessed and my SS disability was approved in 6 weeks. When it came time for re-evaluation, my husband had been diagnosed with Parkinson’s and Alzhiemers . I sent my papers back explaining that I was his primary caregiver and did not want to place him in a nursing home. Again I was blessed and received a letter stating I would not be re-evaluated again and would continue to receive my disability. When I turned 66, my disability transferred to Social Security. The long term disability insurance from the hospital I worked at was a nightmare. I had to be evaluated every 3 months while waiting to be able to apply for disability. At one point, I had fractured my ankle and was in a walking boot and did not have cardiac clearance and had braces on both knees with pulled tendons in both knees. They said I could return to work. When I appealed, they cancelled long term disability insurance.

  14. says: Tina Keith

    I’m on attempt number two for my case. Going to be second hearing next month. I have already had to get one postponement because my original representative dropped me saying she “didn’t think it could be won”. I tried a lawyer in town, that specializes in SSI, but they wouldn’t even meet with me after the initial phone interview for information. Again, didn’t think it was going to be a case they could win, so won’t bother.

    I have multiple physical and mental health issues, including fibromyalgia related. Many things were advanced due to neglect by previous PCP that I had. Has anyone else had a case tossed because of judge ignoring one set of doctors and taking the other at their word? The “consultant” for the court saying that basically nothing was bad enough? This is what I’m battling with for my second time finding help. Less than a month and I’m alone now. Unless he’ll allow another postponement, then I will have more help and new testing to support everything moreso.

    Ok, I have ranted. Just wondering if it’s the same for others.

  15. says: Bette

    I was told by Social Security you have to be Unemployed for 1 year along with the Evaluations before a person would be considered.
    So I work and suffer! I can’t take the meds the side effects are a problem for me.

  16. says: Michelle

    I have been trying to get my disability for going on 5 years. I have had to start all over from the beginning I have been denied so many times, even seeing the judge said I could fold laundry, bet my family wish I could. So now the only back pay I get to pay for all the bills that have piled up because I cant do anything and I get no pain meds, no relaxants, nothing for the nerves. But they say nothing is wrong. I pray this world would have to be in our shoes for 1 day then they would understand how we live Everyday not just 24 hours. Sorry needed to speak my mind to someone who understands.

  17. says: Tracey

    I have M.E fibro severe asthmatic sever depression anxiety panic attacks ibs disc problems my care was stopped as they sat I could go down stairs on my bum really with my discs oh and pain n how do I get up at the bottom I can’t cook I’m on my own no help tried suicide twice and failed I’m suicidle but still the. Assessment I had for pip said I dressed appropriately for the weather I was made t do certain exc exercises when I didn’t want t knowing I would suffer I’ve had all thisfor 11 years passed every assessment yet this assessment I didn’t I have memory problems ect but he said I could recite my meds oh I’ve only been on them for yrs just cause one min I can the nxt I might not how can they assess u in one sitting impossible for M.E n. Fibro I sleep in day for a few hours my body shuts down I have falls got a right weekness on my leg and left ankle gives way had evidence but still got turned down I’m so anoid can’t pay my rent now so face the streets n they wonder why I feel the way I do grrrrrrf

  18. says: Wendy Fayles

    My daughter has fibromyalgia, POTS, bipolar disorder, depression, anxiety, IBS-D, allergies, etc. We started the process of applying for disability (using an attorney) after a suicide attempt that landed her in the hospital at age 21. It took two years, but she was awarded disability. Now she is 28 and in the middle of a review process where she was denied disability because she has “recovered” enough to supposedly do a low-stress, part-time job somewhere in the United States (of course, they don’t tell you where these jobs are or if you would even be hired for them). Her “recovery” was based on a 50-minute interview with a psychologist who noted that my daughter was able to walk from the car to the building and answer basic questions. Well, yeah … after I made sure she woke up in time and drove her to the interview. As I told the most recent examiner, due to my daughter’s multiple illnesses there is never a day when she feels 100%. How are we supposed to predict when she will have an “okay enough” day or a “I need to sleep 20 hours” day? And what employer would put up with that uncertainty? I feel that my daughter is being penalized because she has a supportive family and she presents well. She is neat and clean and can add 2 plus 2 and knows who the president is. She also has a huge box of medications that she must take every day that, if she loses the Medicaid that came with being on disability, would cost over $3000 a month. It’s terrifying to even think of the idea that she could lose her disability.

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