question: anyone have experience filing for disability with Fibromyalgia and related issues

[nashville_brook]

i have what is being called fibro as the result of an infection in my spine. my vertebrae are fusing naturally, but i've got chronic pain and fatigue as a result. i have the "official" diagnosis of fibro, but also speculation of (facet) arthritis and discs that pop in and out b/c they are degenerating in the fusing process. all the mechanical pain has supposedly caused the fibro syndrome -- so i have referred pain, starting in my back and referring to my hips, thighs, neck and shoulders. i also have lingering leg pain from DVTs and problems with tachycardia, osteo arth in my knees and carpel tunnel in both wrists. i bascially fell apart when i hit 40. with the infection came a mysterious bout of hepatitis and pancreatitis, so on top of the pain and fatigue there's this terror hanging over my head that with stress, any day all hell will break loose again.

i'm in between a rock and a hard place financially because i've lost my job for not being able to "keep up." i'm a marcomm person. very competitive field. i'm on the creative end of things too, which makes the competition even worse.

i know it's a long shot, but the longer i go without work the more likely it seems that i may never be able to find anything. in the interim, i have to live. right now that means living with friends and that won't last much longer.

i feel like a complete failure, but that's nothing compared to the terror of reaching the end of this rope.

[zalinda]

1. You may find that your other "symptoms" will get you

SSI easier. When I went through it for fibro, they didn't even recognize it as a disease (I didn't get SSI). You have to have thorough documentation, as much as you possible can. You will get examined by one of their doctors and if he doesn't believe that fibro exists, you are out of luck.

Your best bet is to bring "proof" that you have problems, x-rays, blood work and such. And your doctor should either be their with you for your interview or at least write you a very good letter.

If their is any doubt about getting SSI, get a lawyer that specializes in it. Their is info on the web about more recent experiences with getting SSI than I have, so I'd do some research with them also.

zalinda

[nashville_brook]

2. thanks -- i had a feeling the other stuff might figure more

i have an attorney for my divorce right now, but she doesn't specialize in disability. she totally doesn't get it about fibro (i'm not sure i do to tell you the truth).

[silverojo]

11. You can't bring "proof" that your problem exists

The whole thing with fibro is that your labs, x-rays, etc., look normal. :(

[ninkasi]

3. I woman I worked with

before I retired got SSD because of a diagnosis of Fibromyalgia, and she went through this company...

http://www.allsupinc.com/forms/ask.aspx

I don't remember now how long it took before she was approved, and I know that her first request was denied. I looked at the website, and it might answer some questions for you. Good luck. Remember, please...you are NOT a failure. Chronic, unrelieved pain can also cause deep depression. It doesn't hurt to check it out, and I believe that there is also some information at the Social Security's government web site.

[DUgosh]

4. Fibro is a wicked disease

But it alone won't get you SSD. It's auto immune side effects however will sadly keep you from holding a full time job and most likely enable you to receive your benefits. Be sure to list all of those on your SSD application, they might include chronic depression, thoughts of suicide, memory loss, meniere's disease, tinnitus, arthritis, lupus, congestive heart failure, bronchitis, carpal tunnel, crohns disease, hypo thyroidism, the list is endless.

[Yoda Yada]

5. You might try the Fibromyalgia website

Go to the Fibromyalgia Association website. ( Click on "Links"....you should be able to find some help there.) You are NOT a failure, fibromyalgia is a real illness.

http://fmaware.org/

There is also a magazine called---Fibromyalgia Aware

[mentalsolstice]

6. I got SSDI...

Cerebral palsy (pretty mild in the early days, but it's catching up with me now) and fibro...my best advice is to list your diagnosis only where you're specifically asked to do so on the application...FOCUS on how those conditions curtail your ability to work and live. Too many applicants get hung with the "But I have fibro so I can't work a full day", rather than saying "I am too fatigued to work a regular work day...I need frequent rest breaks...my condition (or medication) causes me to have memory lapses and I experience frequent confusion...I have a difficult time concentrating on tasks for long periods of time".

Focus on the consequences of your diagnosis...not the diagnosis itself.

[nashville_brook]

7. this is good info -- i'm not convinced fibro is the final word on my situation

right now i'm having so much bone pain and immobility that i'm questioning that fibro is going to be the final dx. after having a lengthy discussion in the Chronic Conditions DU Group, i'm going back to my primary in order to get a referral to rheumatologist.

every day brings another challenge. today it's colitis and my back feels like it's on fire. for the last week it's been back spasms and immobility. i had just finished a mentstrual cycle with migraines and doubled-over abdominal pain. i can't sit. i can't stand. i can't concentrate. i can't see beyond the next 10 minutes.

the more i learn about fibro, the more i'm think that it might describe some of the pain symptoms i'm having, but it's not touching the bone and joint issues. it feels like i'm heading toward not being able to walk, as i've got so much pain in my core -- where i should be trying to increase strength. i can't get near working those muscle groups because of the deep pain.

it's so frustrating.

[Bluestar]

8. I have polymyositis, just got approved after being turned down twice

My advice? Get a lawyer who specializes in SS disability cases and do it now as it will take you at least a year to get a hearing. I was turned down twice--govt doc was terrible, gave me a cursory exam, tried to tell me it was all in my mind.

Google "social security disability attorney" and they will come up. Those who specialize ONLY do SSD cases. It won't cost you a dime if you don't win--the payment is regulated by the government--25% of back pay only and it is capped. Those who specialize know how to fill out the paperwork, they will counsel you as to what to say at the hearing. They have a special form that you will fill out together with your own physician. There will be a different (in my case, better) doctor at your hearing than the one who examined you. They say it is a whole new ball game when you get to hearing. They seem to turn down everyone at least once who has an uncommon disease. Most lawyers who specialize in this win 90% plus of their cases when they get to hearing.

Best of luck to you. If you have any other questions, PM me. I wish you well.

[Irishonly]

9. My advice is to get a lawyer or advocate

Social Security put me through hell for three years and I ended up hiring an attorney. I have fibro as well as a few other disabilities but I was approved for neuropathy.

When I first saw my attorney she couldn't believe I had been denied and although I realized that was her job I also knew they turned away cases. When we got to the hearing I was told to expect about 45 minutes of hard questioning. The judge looked at me, read my file, asked me a couple of questions and apologized for what the system put me through. I have belonged to neuropathy support groups and the majority of them had the same experience I did.

[cap]

10. get an attorney tomorrow

they need to help you with the filing. There are all kinds of delays if you try to do it yourself. They delayed SSDI for an in-law who had a ruptured heart for months and months. He was literally hooked up to machines for life support. They finally pulled some strings and got a judge to look into it. He got SSDI a week later.