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Adrienne Dellwo

Social Security Disability for Fibromyalgia & Chronic Fatigue Syndrome

By May 31, 2012

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Are you unable to work, or do you fear you won't be able to work much longer because of fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS)? A lot of us have to face that decision at some point, and it can be frightening and overwhelming.

The Social Security Disability Insurance (SSDI) program is set up for exactly that circumstance. However, the process of applying for benefits can be daunting. The following articles can help you figure out how to go about it and what to expect:

Have you applied for SSDI? How did it go? Do you have advice that could help others? Leave your comments below!

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June 1, 2012 at 2:57 am
(1) Vanessa says:

I applied, was denied and now have a disability lawyer handling the appeal process. With all my doctors, testing and medications, I should not have been denied.

June 1, 2012 at 3:48 am
(2) Bent But Not Broken says:

I have been denied and appealed twice. I have yet to see any successful cases for people around my age (I just turned 30). I do not want to give up and earn $0 for 12-14 months to “Prove” that I am sick. I am broke as a joke, can hardly work but am not wanting to give up and die in order to receive disability… there is NO help for patients in my position that I have starting calling “In-Betweeners”
Therefore I just started Bent But Not Broken; that will provide Emotional, Educational & Financial Resources to Both Patients & Their Caretakers Living With CFIDS/CFS.
There will be an application process on our site for people to apply for financial aid with medical treatments and maintenance that THEY choose. We are in the process of building the permanent site with all the resources to launch in the Fall. We have temp site up now. Come visit us!

June 1, 2012 at 3:41 pm
(3) Betty says:

I have been in the process of applying for SSI/SSDI for nearly 6 years. I have been denied, reapplied, gone to court and denied, appealed the court, denied the appeal of that decision twice, and my lawyer said the only step left is Federal court of Appeals. Even when I went to court, They’re experts stated that there is no job I am physically capable of ever doing, yet they Still denied me!
And everytime it’s a 6-12-18 month wait!
I have a huge medical file, a giant paper trail, and have been to every Dr under the sun just like they ask for!
We’re going broke, homeless and hungry in the process!
I’m starting to think the whole system is run by flying monkeys ……

June 1, 2012 at 3:49 pm
(4) Kathy says:

I applied in November 2003 with a Rep from a lawyers office (big mistake, always use an experienced lawyer). He let my case fall through the cracks by not staying on top of it. Luckily (?) we never received notification of denial, so, I was allowed to appeal. This went on to the final ‘dismissed without prejudice’ over a year ago. I had to retain a lawyer & start over before I could reopen the other case. This is my last chance, because if I lose this time, I’m done for until I’m 62/65 (55 now)… my work history ended in 2007 & there are no part time jobs here. Prayers to you all for success in your cases & health.

June 1, 2012 at 4:00 pm
(5) Mora says:

I was denied about 5 years ago. They judged me by my age. I was 25 then. :( not fair

June 1, 2012 at 4:09 pm
(6) Leann says:

I went thru a company called Allsup. From beginning to end it took 2 years in which I won my case. I recommend them highly!

June 1, 2012 at 8:13 pm
(7) Julie says:

I applied 9/1/10 and was approved 1/11/11. Yes I used a lawyer but I made SURE my case was well-documented before I applied.

I highly suggest people see a NEUROLOGIST to get their opinion. I had 9 doctor opinions, everything from a chiropractor and their fils to a neurosurgeon. I submitted MRI’s as well. I also had back problems although the fibro is the worst on a daily basis.

I have been told be a former SS examiner, a current examiner and a SS appeals person that to get SSD for fibro, this is what helps:
1. Being over the age of 50
2. Seeing a neurologist like I mentioned above.
3. You nearly always have to have both a physical AND mental disorder
but this is not hard, since most of us with the fibro are DEPRESSED
and have anxiety.
4. You MUST be taking any meds that you are prescribed (such as for
depression and anxiety) and if you are claiming this,
you MUST keep your counseling sessions!!
5. If you have “fibro fog”, make SURE to mention this!!
Esp. if you have a job where you must use your
memory, etc.

Most people have NO idea of the medical terms and the types of documentation you need to do on the SS packet……let your lawyer help you with this or for pete’s sake, have a MEDICAL PROFESSIONAL do it!

June 1, 2012 at 8:15 pm
(8) sharon says:

I went through premium disability, started in Feb. of this yr. got approved 2 weeks ago! Allsup is great too. I recommend both of them. I have been out of work since Dec…..2 yrs. before that I could only work P/T.

June 1, 2012 at 8:42 pm
(9) Gay says:

I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome in Feb. 1990 and worked thru Aug. 1998. I applied in 1999 and of course was denied, I contacted my state Congressman for help and went thru the appeal stage. However, I started receiving my benefits in May 2001 retroactive to 6 months after I was unable to work. I truly believe a Lawyer would not have been able to help me. My Husband went with me to the appeal and they let him answer most of the questions as my caretaker. He also filled out the paperwork for me. Hope this helps….don’t give up!

June 1, 2012 at 8:45 pm
(10) Eileen says:

I see someone mentioned seeing a neurologist. Yes, that is good but I have been told that with SSI cases that if you are not diagnosed by a rheumotologist that your chances of being approved are not as good. I was diagnosed with fibro in 2010 and knowing this I went right to a rheumy for my diagnosis. Just in case somewhere down the line I need to claim SSI disability. Thankfully I am somewhat controlled with meds at this point but at 35, I dont know how long this will last. I have fibro and chronic migraine disease. Every waking moment is filled with pain. I wish you all the best of luck. No one should have to feel like this. I guess it was just the hand we were dealt.

June 1, 2012 at 9:03 pm
(11) Deb says:

I recently was awarded Social Security Disability. I used Allsup which I got infor on from this site. It took 5 months and I found them to be very helpful and easy to work with. They handled submitting all forms that are completed with you by phone. I did not receive retroactive so the fee was only $350.00 which I think is very reasonable. I am 57 and I do know my age has played a major role in my ability to receive it. There are advocates for People with disability and I have recently contacted one for assistance in housing as my income has been cut in half due to my disability. Disability.gov has many links to advocates and other services. Dont give up there are services out there to help and an advocate can connect you to them, assist with applications and anything else you need. Trying to go through all the sites and links on your own is extremely overwhelming, especially for those of us with Fibromylagia and CFS. Good luck

June 2, 2012 at 12:36 am
(12) Kate says:

I retired from the Post Office in Dec 2004 — I retired on SS disability due to fibro. I had no difficulty in getting approved. My HR person said that was unheard of. But my being over 50, eligible for retirement at 55 from USPS, and the fact that I was a full-time Union officer at the time might all have had something to do with it. However, I kept impeccable records of my absences from work (as a letter carrier, in the field) and claimed FMLA every time. I had — and still have — checkups with my rheumo every 3 months. He was very helpful in writing the excuses I needed for work. I kept all that paper work, plus records of when I missed work as the FTO at the Union. In fact, it was the lack of support from the Union that led me to finally request a disability retirement, but that’s another story! It might also have helped that I wasn’t claiming a work-related disability.

Throughout my fibro history I’ve considered myself to be very lucky. My family doctor suspected the diagnosis first and referred me to the rheumo I still see today. I truly have been blessed with my support system, as I understand that it can take a lot of doctor-hopping to even get the diagnosis!

Keep trucking, we have to keep making noise about this condition. It’s hard to believe that even today there are doctors who think it’s all in our heads!

June 2, 2012 at 6:21 am
(13) Rhonda says:

Hi there are you people from australia. Im about to apply and i hope its not as hard as what you’ve all been thru x

June 3, 2012 at 3:29 am
(14) Pam says:

All this sounds so discouraging. I just filed. Went through Citizens Disability Hotline. I will let you know if they do me good.

June 4, 2012 at 1:40 am
(15) Renae says:

I was forced to stop working in October 2010. Through work I had long term disability that paid me 3/4 of my salary while going through the SSDI process. They had my case handled by Allsup and I was denied the first 2 times and approved before I had to go to court. It 25 months until I was awarded. I am 48 and I thought that I would never get approved. Don’t give up and get Allsup on your side! I could never have managed this without them!

June 12, 2012 at 8:05 pm
(16) Lee Ann says:

I was let go at work Oct. of 2011. I saw my doctor in Nov. of 2011, and asked him if he thought I should file. he’s a new young doctor, and said he honestly didn’t have any experience with it. However, with electronic records and the referrals he had sent me to with a neurologist, a rheumatologist, etc. and he attached every lab, exray and referral to the electronic charting. so when they read his electronic charting, the attached orders and labs were with it. I credit him for how fast I got my SSDI. I filed in November and got it 118 days later. However, one has to be unemployed for 6 months, so I don’t get a check until the end of this month. I didn’t go through an attorney, I thought I’d try it myself first, as I am a nurse, and I know what all goes into the charting. Because of my doctor, attaching everything, I think that is why I got it so quickly. Also, I had more going on than just fibro. I had narcolepsy, venous insufficiency, obesity, fatigue, IBS, TMJ, asthma and edema in my legs. anyway, I was happy that it went through so fast. And I am 59, and I think one has a much better chance. They’d rather pay for 7 years, instead of 40 years.

June 12, 2012 at 8:55 pm
(17) Michelle says:

specifically for people from Australia: get in touch with the cfs/me association of qld located in Toowoomba. They will have all the latest information on diet, exercise, doctors etc. Also they will be able to give you good advice on applying for the disability support pension. I have been on mine since 2000 and before that as a child but I suspect that I was accepted more for my cerebral palsy then my cfs and fybro. I had to have a centrelink doctor examine me at the time. I took my medical file with me (my doctor had closed doors and we had gotten our hands on it) which documented each diagnosis from the age 0 onwards. I was exhausted the day I went and nearly fell off my chair from tiredness. Dress comfortably through out the whole process and do appeal the decision with all your doctors backing you.

June 12, 2012 at 11:10 pm
(18) Elena says:

I am 27 and was diagnosed with Fibro at the end of July ’10, after having been sick for a few months before that and nobody could tell me why. I was diagnosed by a rheumatologist originally, but had to quit working at the beginning of August ’10. So I lost my insurance and couldn’t see him anymore, and being part-time I didn’t have access to short- or long-term disability benefits from my job. I filed that October on my own, was denied, and gave up b/c I didn’t know what to do. I filed again in December ’11, this time using Allsup. They are very nice and helpful. It’s been denied twice already and now I am waiting for a date to be set for my hearing. I finally had a doctor actually fill out my paperwork now too. I’ve been going where I qualify for a sliding-fee scale and seeing a nurse practitioner but she couldn’t legally fill out my paperwork. I just got the doctor in charge of her to do it. Also, the doctors in my area aren’t great to start with, I go out of town. But I can’t afford to go to a specialist, my boyfriend works and takes care of me and everything. I’m so thankful for him!

June 13, 2012 at 1:31 am
(19) Donna says:

I have fms, the final hearing I had to appear. This is how they look at you: if you can sit in a chair in a parking lot and take tickets you are declined..
I am not going into our aches but be emotional cry and tell them you do this all them . My encounter with this was at my sons church and had been on the ground floor , they were beginning to have the show start, a man came to me and said go up stairs. He did not realize I could not make it up stairs, and I was crying,my disabled daughter went to get her brother , he helped me up there and I set down trying to explain why it happened. Basically, I had been told what to do for so long at work as an insurance adjuster, I had had it. No more telling me what to do. I told this to my neighbor who had been trying for years, he got his ssi. Good Luck, Donna

June 13, 2012 at 7:54 am
(20) Teresa says:

To all waiting…..plz see comment #7…….The ONLY way to go. Many Dr.’s may say you have just to satisfy your inner hypochondriac. You must have 3-4yrs of medical records. You must have the same w/specialists. If not,they will deny you. This is because of all the idiots who can work,but who choose not to because they don’t want to,or don’t feel good (plz read w/the sarcasm you can’t hear lol ).
My husband has had MS for 25 yrs. He is still working. He suffers bouts of spastic muscles which means stumbling. He can sleep 12 hours and still not be rested. The list goes on and on. He still works tho not complaining. We inquired about filing for disability. He must be completely off for 6 months w/no chance of returning to work. How do you support yourself? You don’t. Eligible for help? Hell no! Just have documentation beyond what’s needed and be prepared to wait. Even when you hire a lawyer nowadays doesn’t mean a speedy process. Their hands are tied to the red tape. Hang in there…..it only took me two yrs to receive mine,but that was back in 1998 when people weren’t flooding the system because of what I said above.

July 17, 2012 at 3:53 pm
(21) Milissa says:

I filed for disability in December of 2010. I used Allsup to help me throughout the entire process. After receiving many denials I finally got to the hearing level in front of an Administrative Law Judge. I was award disability in June of 2012. Although my disability started in January of 2009 they only go back one year before you filed, so I was back paid for both myself and my 12 yo daughter from Dec 2009 to June 2012. Talk about relief. When the letter came I just cried… because it felt like a weight had been lifted off my shoulder. I am a registered nurse by trade and it is quite depressing to have money problems but be unable to help due to pain, physical limitations and difficulty with cognitive functioning.
I recommend Allsup to anyone, they were really a big help. Now all our debt is paid off and we are living much easier.

September 11, 2012 at 7:17 am
(22) millianne miglieri says:

i was in a car accident November 13,1989. they say i now have fibromyalgia. i was denied ssd. i beleave, the reason i was denied is ,because i was asked if i had a law suit pending for the accident. I said yes i do.i havent worked in all these years. i wear a tenns unit,have it on right now! use moist heat packs ,i have to rest all the time, i grind my teeth so hard that im still losing my teeth,and i wear a guard on my teeth! but i get no help! i wish you better luck than i had! the goverment would rather help drunks and people that dont want to work.

October 9, 2012 at 4:14 pm
(23) Anne says:

Hi All,

I was diagnosed with fibro in 2009. Was with the the hospital a few weeks a go and they sent me for a Vitamin D test. Apparently new research has shown a connection with this to Fibro. I am awaiting results.

I was refused invalidity but am appealing. I just hope that the people who do not think that this is a disability never get it. I wonder how they would feel being in pain from foot to head all day every day. On top of that worrying over money and taking anxiety attacks.

Best of luck.

August 30, 2013 at 2:17 pm
(24) bethany says:

i applied for ssi dissability because no work history in last ten years. i was diagnosed with fibromiagis in 1989,have had a plastic disc replacement in neck,spine damaged so badly all nerves tangled to where can not operate,buldgeing disc,degineration of spine upper/lower,authritis in hands and legs over pretty much my body,neuropathy in feet and hands, migeraines severe enough to cause sickness,vision so badly have a black dot growing larger in left eye that is not a floater cant afford to have eyes examined,arms hands,legs,feet, back of head allgo numb when in certain positions and sharp stabbing pains in spine where had tried injections before that did not work for me,bones so weak ribbs fracture from a bump,anxiety causes panic attacks along with mitra valve prolapse irregular hear beat,depression goes along with all the worry and stress,pain.stomache pain more often causes weight loss because spacstic colon from nerves.i am 53 and a half yrs of age. stay at my mothers home with a son and daughter have zero income.would love to work as i used to but my health is only getting worse. now i really am scared because my next step is to go before the panel of judges. i do have legal rep. and i dont want to bother her so much .does anyone know if it sounds bad that i have been waiting for my appeal since may this year. i have been trying to get this ssi for year and half now.i have been honest and dont understand why they make it so hard especially for my age.i have no car,a home for myself,son,daughter.have taken whatever i had to pawn shops or sold in order to get clothes,shoes,ect. can anyone give advice.i feel very much alone and getting more depressed by the day…also, i was told 4 years ago not to bend to clean a litter box out. i was told one bump the wrong way i would be paralized permanently. worry and fear every day…

November 7, 2013 at 3:35 am
(25) Christina says:

It is such a daunting process and frankly very disheartening. I hired the law offices of Eric Shore (seriously if you need someone these guys are miracle workers, you can google their offices) to handle my case and thankfully they are very thorough on the ball and never failed to keep everything in order even when I’m sure my lawyer wanted to throttle me herself for not getting paperwork sent to her on time. In any case even though many people were preparing me for getting denied because of my young age these guys helped me get approved and the entire process was finished within a 16 month period. Sadly because I am 22 (began the process at 21) I didn’t work nearly long enough for my contribution to social security to be doing me much good right now. It’s hard because my husband is the only one working and I am in a constant state of pain but my disability checks are literally laughable. Barely enough to help with doctors co-pays prescriptions and maybe my cell phone bill. There just seems to always be a struggle one way or another. I find myself in a position where I may need to put myself back in the work place even if it kills me.

December 17, 2013 at 5:26 am
(26) paula says:


January 13, 2014 at 8:03 pm
(27) Gerry says:

I’ve been denied twice and I’m waiting for a hearing date in front of an Administrative Law Judge. My illnesses:

1. Fibromyalgia
2. Anxiety
3. Depression
4. Osteoarthritis in just about every part of my body. I need a knee replacement.
6. IBS.
7. Pelvic pain from pelvic floor dysfunction
8. Will be undergoing surgery soon for a hernia (yes, women get them too).

I will be 60 years old this year. I worked for 41 years until I just couldn’t do it anymore. Too much pain, not sleeping well, problems with memory, etc. I’m at a dr. appointment for physical therapy much of the time. I didn’t feel up to taking this on by myself, so I hired a disability law firm. I have lots of records, prescriptions, to back up all of my maladies. I haven’t worked for 18 months.

Lucky for me I have long term disability through my employer, but this will more than likely run out in October because I initially went on leave for depression and anxiety. They only cover “mental” things for 2 years and then they drop you. I’ll then have no medical insurance or LTD payments.

Well, from reading all of the above, I am in better shape than many others. I still have a roof over my head and food on the table. Our system is extremely flawed.

I hired Rabin and Rabin law firm (Chicago and DesPlaines, IL). So far, I have not been impressed with them. I seem to be doing their work for them. One of my doctors faxed information to them twice and they claimed they never received it. She finally sent the information certified mail/return receipt. I have dealt with 3 paralegals. All 3 have been condescending and bitchy. It’s too late at this stage of the game to switch to another firm. It’s time for me to talk with an attorney there and NOT the paralegals.

It’s very difficult to stay positive. I would much rather be working if I could. Good luck to all of you.

March 27, 2014 at 8:01 pm
(28) Diane says:

Been trying my ss disability 7yr.just got turned down for 3 time.So dishearting.I have fibromiagis,back problems,a bulding disk in my neck l also have real bad headaches and long list of other things. when l started l was 43 now lm 50 crazy, My case goes to federal court my last chance .Good luck to everyone

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