Anybody approved for SSDI for fibro?

WookieeRN, BSN, MSN, RN · Dec 31, 2014

I have a friend whose husband has fibromyalgia. They have been trying to file for SSDI for about two-ish years. They keep getting denied but have been trying to do it without a lawyer. They're biting the bullet, so to speak, and putting out the money for a lawyer to help them get approved this time around.

She told me the documentation they needed was borderline ridiculous, but it was manageable to an extent.

Esme12, ASN, BSN, RN · Jan 1, 2015

Here is the catch....you must have been unable to work for at least a year due to your disability.. You cannot apply for SSDI while employed.

Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:
You cannot do work that you did before;
We decide that you cannot adjust to other work because of your medical condition(s); and
Your disability has lasted or is expected to last for at least one year or to result in death.

These is a list of diseases and diagnosis that will get your claim expedited.....Listing of Impairments - Adult Listings (Part A)

Fibromyalgia is not one of them. The paper work is ridiculous and they sometimes recommend to see one of "their physicians and psychiatrist"

The big one! GET A LAWYER, Two thirds of all claims are denied the second they enter the building just because they can. The lawyers "fee" by law is a limited percentage of your settlement (I can't remember how much but it was like 3% or something like that) amount when you are approved going back to the date they determine that you became disabled. The lawyer gets your paperwork to the right person and the right desk. It expedites the process. Be cautious of the lawyer that talks about addition fees for mail ans other copied of your chart....they can get exorbitant if you don't watch them. The amount set to be paid is based on your last 5 years worked in a job that is eligible for SS benefits...believe you me it is a miniscule amount with a max of around $3,000.00/MONTH.

There are several good site that help you know what to say and do....Social Security Disability (SSDI & SSI) for Fibromyalgia | Disability Secrets is the best advice I found.

Your mental health diagnosis will be very helpful if you decide to go this route...they are not crazy abut fibro alone. YOur employer paid STD and LTD will have to either denied or run out before you will get approved for SSDI in most cases, But they will require you to use your employee benefit first.

My situation is different. I got approved in 4 months after several years of being unabe to get employment and employment with accommodations. I have a rare muscular disorder called polymyositis/dermatomyositis, MS, and lupus.....or Multi Connective tissue disorder. MCTD...my physical disability is profound.

I am sorry you are struggling....((HUGS))

Long Term Care Columnist / Guide · Jan 1, 2015

Thank you for providing that link, Esme. From there I went on to learn about how my own disability claim may/will be handled by SSA and what my attorney can do. Nothing like being prepared! :)

Simba&NalasMom, LPN · Jan 1, 2015

Wow, Esme...thanks so much for the thoughtful response and the time it must have taken to write it. That's a great site! It looks like in 2012 the SSA changed their criteria for approving folks with FM, accepting what is typically thought of as "subjective" s/s, which makes it more likely for folks with fibro to be approved the first time around (one example is they now accept 11 of the 18 tender spots as evaluated by an MD).

You are so right about the amount...I looked my estimate up on the SSA website and it's just around a thousand a month (I'm an LPN and currently work for a nonprofit, so it's not like I've made a fortune in the first place, LOL).

Disability is a definite last resort thing for me and I know there's a lot more I could be doing to alleviate my symptoms; just easier said than done.

Esme, I'm so sorry you have so much to deal with. From your posts that I've read, you seem to handle it amazingly. You are so appreciated for all the support you give your sisters.

Esme12, ASN, BSN, RN · Jan 1, 2015

Thanks....it is what it is...I don't cry over spilled milk. I fouhgt it for years while I worked. I kept it hidden and yes I lied to employers or I wouldn't be able to get a job. But finally my disability became to hard to hide.....my physical deterioration was unavoidable and no longer could be hidden.

When I was going thorough several work-ups. ALS, brain tumors, cancer we all apart of the differential so I figure if I am not 9 ft under ground I'm good. I have wonderful children and a patient hubby. My daughter just finished her first semester of a BSN program....3.97....I am so proud. My son just got accepted to the program of his choice (4.0) for Robotics (no not MIT but a great reputation as well....LOL)....they are 11 months apart.

They are happy, they are healthy, I have air to breathe and thankfully a roof over our heads and good food on the table. I'm good.

I have been a nurse since I was 18. I don't know how to not be one. I have to help or I"d go crazy. Allnurses has given my my nursing family back to me. I am a firm believer of paying it forward. Going on disability was an agonizing but necessary decision. I became one of those who had "entitlement" one of those who live off the backs of the working. When I read things about being lazy and get a job...man what I wouldn't give to be able to actually go back to work. You are doggone right I'm entitled I have paid into it since I was 16.

I work here....and I volunteer at local nursing programs in the sim labs helping the nursing students navigate case scenarios. they don't pay me....I don't have a masters (and yes you can work to about $700.00 a month and keep SSDI). sigh. I couldn't afford to pay for a masters and I have no desire for one.

I'm happy...and I love AN

NurseGirl525, ASN, RN · Jan 2, 2015

Esme is exactly right. You cannot be employed at all while filing for disability. It took me over 3 years to get mine. I had to file three times. I have fibro but they would not even consider looking at that. I'm going to tell you 6 mos is not long enough. I am 39 and was first diagnosed with fibro at 15. There is an enormous amount of paperwork. I would also tell you, look at getting a representative, not a lawyer.

I retained a representative. I did not want one of those cheesy commercial lawyers. I'm also going to tell you I have epilepsy. You would think that when someone did not drive and could not physically handle a job disability should be easy, it's not. My medical records are enormous and every, single, one, has to be sent in. Every ER visit, every hospitalization, every doctor visit. I knew I could never handle it all, so I retained a representative that could help. He came highly recommended. He used to work for SSDI and when he retired he decided to become a representative. I feel that I got more attention and he could work on my case better than some lawyer that has 20 clients.

I had to go before a judge. I had not worked in 5 years. She grilled me for hours. I was about to leave the room. She was not friendly at all. She told me she would consider me for the jobs I was trained for. She had 6 positions listed for me. It was based on previous work experience and education. Then they call a vocational expert. She asks this person if I am qualified to do any of the jobs listed. He said no, but that I could do like 2 other jobs. They were weird jobs too. So then they finish up, and you wait for several more months for the judge to write their decision and then they send it to a writer. Then the writer sends you their decision.

I think the only reason I was approved was because I was in retail management and the occupational guy said I could not have a job where I had to be on a ladder at all due to seizure risk. I think that secured it for me. Plus, I had a guy who knew what he was doing and got every ounce of paperwork in. There were a lot of things that had to be explained to the judge. I left my fibro pretty much out of it, but I have a severe case of it. I take pain meds every day for it.

With fibro, you have to get to a point where you say, my pain is not better, but it is not worse either. I think it's sad that in 2014 we can't treat this better and the medical community doesn't have a good understanding of it, so why would Social Security? You know what I mean?

Here is how I manage. I work closely with my family doc and pain management doc. Both are good doctors. I make sure that I get adequate sleep. That means if I have a day with nothing to do, I take a nap if I need to. I go to bed at the same time every night, and get up at the same time every morning. I'm in lots of pain in the morning so I stretch. Stretching is important. I take 15 minutes in my morning to do that. I take my meds at the same time every day. Pain med in the morning. It's a 12 hour ER tab so it covers me for 12 hours. I've been on the same dose for 5 years and have never needed to go up on the dose. I take an anti-depressant at night. I'm doing well. Do I have pain? Yes. Is it manageable? Yes. I also exercise in the summer which helps big time. The winter is very hard on my fibro. I do much better in a hot, humid environment. I barely need any meds if I'm in Florida or something.

My point to all of this is and you can PM me if you want. Don't expect SSDI for fibro. They are not going to do it until more is known about it. You could on the off chance get a sympathetic judge. But don't count on it. I know they see a lot of people every day scaming the system so I think they get very cynical.

Simba&NalasMom, LPN · Jan 6, 2015

Sorry for the slow response...thanks so much for taking the time to help, Heather! It's amazing how unique the triggers for flare-ups are from person to person. I live in Portland, OR, and humidity is the absolute death of me...the most recent fall, even when the temps dropped to the 60s, if it was over 40% or so humidity, I had to run the AC.

It must have been awful for you to be diagnosed at such a young age...looking back, I've always slept more than average, so I think maybe I've had something going on myself for at least that long. My dad still tells me how he worried that I was on drugs as a teenager, but then he decided I was just lazy (needless to say, he's not my strongest support system! Although he has asked about my sleep lately without making the "you're always tired" cracks).

Have you ever had a specific localized injury such as bad muscle adhesions or myofascial issues? I have one that's been bothering me for at least 6 months and am thinking of asking for a physiatry referral...I've done stretching, massage, chiro, and all the exercises and feel that the only thing that might help it is injections.

blugreenh2o · Jan 18, 2015

Esme thank you for that link. After reading it, it gives me hope that I'll be able to qualify for my diagnosis of lupus should I need it ever. Times are tough right now with work, and I'm trying to get out of the ER into something else, along with changing treatment i.e. meds.