Fibromyalgia Community
Where do I start?
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This patient support community is for discussions relating to fibromyalgia and related pain management.

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Where do I start?

I have two issues.  I know I have two discs in my lower back that are somehow bad but the doctor left town, records destroyed.  I don't know if there is a copy in my regular file. I was told "In ten years you'll wanna do something about that."  It's been ten.  Second, we think I have fibromyalgia. THe doctor I trusted for years said I had lupus.  He lost his license.  My new doc tested and said, nope. Research tells me I have something, Fibro looks to be it from all the symptoms.  I had lost my insurance and can't get any so we have tried to keep everything out of my records.  I am finding now as the temperature drops to 40 at nite I am having this pain again in my joints and my muscles, then add on the bad back.  My left foot is numb. I can't wear heels, my ankle collapses.  I can no longer even clean my large house in a day without lots of pain. WHere do I start to attempt to get disability?  I've seen many doctors over the years so I have records spread all over.  THe last 15 are from a doctor that can't practice here anymore.  All the various symptoms that come and go prevent me from doing anything consistently.  I do not know even how to begin.  Can you help me?  I have always been an active person and this has slowed me down so much it's infuriating.  I always did ALL the yard work including sawing limbs off trees.  I can't anymore.  I'd appreciate any help everyone can give me, I know I have a long battle ahead.  (Part of the problem is I cannot afford the expensive tests, etc for a firm diagnosis on my back, etc)  thanks, Cat
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What you need to do is see a doctor who is friendly to Fibromyalgia. Go to the National Fibromyalgia Association's website, register with them (it's free) and search their database for a doctor in your area and go see them. I understand you are on a budget, but many of these doctors are willing to work with you, or they are pioneers in their field and may be running special drug trials or programs that you can get involved in for free or on a sliding scale basis. It's your health and sanity we are talking about here. You may have to make some sacrifices in order to feel better and to get someone to help you and on your side. Seriously, THINK ABOUT IT HUN.

The website address for the National Fibro Asso is: www.fmaware.org

Take care and good luck.

-Dusty
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I totally agree with Dusty about finding a good rheumatologist who is fibro friendly - unfortunately, not all of them (or other doctors for that matter) are.

Without testing, records, diagnoses, etc., chances of winning a disability claim with Social Security are about nill.  It's a difficult and long enough process even with lots and lots of documentation.  Once you obtain the appropriate testing, records, etc., and if your doctor has determined that you can no longer work based on that information, then your next step would be to submit a disability application with Social Security.  You can either do this on your own, or obtain the help of a legal practice that is familiar with the Social Security disability process.  Many of these groups do not require any out of pocket payment - they receive their payment by a portion of whatever your first payment from SS is.  I submitted my initial application to SS on my own (didn't know about the legal groups at that time), however, when I received my denial letter, I contacted the legal group and they eventually were able to help me win my case - not only win my case, but get my eligibility date back-dated to the time when I first became unable to work.

It's important to know, however, that even with the legal help and good documentation, the Social Security process can sometimes take years - mine took about 2 to 2 1/2 years.  And even once you are determined eligible to receive disability, there is a two year waiting period before your Medicare becomes effective.  In my case, however, since my case took between 2 and 2 1/2 years, and they were able to back-date my eligibility date to when I first became unable to work, I only ended up having about a month to wait before my Medicare became effective.

The other thing to remember is that even if you are denied at first, do not give up - you can appeal and go through more processes to attempt to get your disability approved - this is where a legal group would really be helpful - they know what steps to take to improve your chances of being approved.

But again, your first step would be to find a good physician who is not only fibro-friendly, but who can also diagnose your back problems.

Best of luck!
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