This is an excerpt from a letter I received from a fellow FM sufferer who wanted to outline for me what she included with her SSDI claim. She got hers on the first try so I thought I'd listen to her :-) This is simply what she did and an outline of her experience. This is not a recommendation from either herself or from me as to how anything should be done.

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Just thought I would let you know that I got my SSDI on my first application, no appeals, nothing. No, I do not know why. So, since I have no idea, I thought it would be good just to tell you what I did if there is any possibility of helping someone else.

My first application was completely lost, so keep a COMPLETE copy of your application.

I have been disabled since 1988 but did not know about SSDI until 1995. What a pity in lost pay! I don't know how everyone else finds out about it, but I was in the dark for all those years.

Anyway, this is how I did my application and these are the documents I enclosed:

- The application. I described my worst days. However, I must add that all my days have become my worst days, so there was no "reach" needed. In Part VI-Remarks, I simply referred to an item number I amplified with another document and said, "Please see attached".

- I used Dr. Nye's "A Physician's Guide to Fibromyalgia Syndrome" as an enclosure. I believe Dr. Devin Starlanyl has since published physicians' guides, as well .

- I used Devin's "Worksheet for Explaining FMS, MPS.....to People Who Don't Want to Know" on page 338 of her book, "Fibromyalgia & Chronic Myofascial Pain Syndrome", A Survival Manual". I turned it into a longer document, describing each and every symptom and daily problem, describing its effect on my daily life.

- Devin's "Fibromyalgia Residual Functional Questionnaire" on page 340 of her book. I filled it out with my doc. I believe it made a great difference in the outcome because it did not leave anything out. Having your doc fill it out with you and sign it also gives him or her a lot to think about, too.

- A list of: Symptoms, very specific. When I was through I had 22 items; Former Medications; and, Current medications. By the time I was through, it was pretty impressive. Remember, I was dx'd back in 1984. I still think it helped, though, because the name of a syndrome or complex does not get through as well as a list of symptoms, again, how it affects your daily life.

- I don't remember where I got this, but I used the document that begins, "To: Department of Health and Human Services Social Security" with the first line changed to: "I meet the American Rheumatological criteria for Fibromyalgia and Myofascial Pain Syndrome". It lists: Other diagnosed impairments; Symptoms; Nature, frequency and severity of pain; The factors that precipitate pain; Emotional factors, etc. I believe this was very helpful as well.

- All of my most pertinent and strongest medical files since 1979 (when I was also diagnosed with Thorcet Facet Syndrome), but basically since 1984, when I was diagnosed at Walter Reed Army Medical Center with FMS and MPS, I copied and included. I also made sure that some of my restrictions on duty, written by doctors were included.

- Other documents.

- A friend of mine, who has seen me for a continuous 2-year period, wrote a personal letter, describing what my days were like. It was sent directly to the SSA office handling my case, not included in my packet.
- A personal letter, describing what I felt like, day to day and HOW the FMS/MPS impact my daily life (for example, it is very painful for me to drive, but I must, now, living alone), my social life has died completely as I melt down by 6 pm every night, the emotional results of losing social contact, the depression resulting from the syndromes, themselves as well as from losing my career as the result of not being able to finish the final two years and therefore my pension and any financial security that I worked so long and hard at (US Army) ,etc.

These additional, personal documents I believe made a difference. I really put myself on the line. I had to get myself over the feelings we are often left with, such as, "You look fine to me...what? You are in pain?" You know them as well as I do. I had to approach it as a serious, nasty disease that should be treated with much more help than it is, usually. In other words, I had to change my own attitude towards myself which had been hammered into me after all these years, and treat myself with respect which few of us are used to doing.

I had just had an exam in for the VA, resulting in 100% disability and I included the entire exam results in my packet for SSDI.

The documents I used that came from other sources, such as Devin's, I used very specifically to me, changing them to fit me. I changed them sometimes significantly, but used the outline and the contents, just used them to fit me.

I had a non-FMS/MPS friend help me, step-by-step, in filling out the application (I could not even write it myself because my hands won't write most of the time). But, mostly, just kept me going psychologically, telling me I could do it, and by the way, where are your 1989 medical files? You get the picture. Someone who is not subject to the Fog and not too depressed to attack the whole thing. I became so depressed over it that I could not function, could not eat, drink or sleep, and ended up in a coma. So, having a friend to help is usually very important.

After more than a year, SSA requested an updated exam from my own doc, on the island. They also requested updated X-rays, which had to be read on another island since we have no radiologist. My doc did a very thorough exam, in fact bringing me in at night to do it. He certainly showed how much he cared by doing this. He spent about an hour with me and then set up my X-rays.

I got the good word about two months after the updated exam and X-ray reports went in. To say I was surprised at the outcome was an understatement. But, I am convinced that the combination of a huge, pertinent packet plus the care my doctor showed and put down on paper made the difference.

Remember that the less the SSA examiners have to search for records the better. If you can provide copies of your medical records, do it. They have trouble getting them, including trouble with timeliness and I think it is easier to just give up and deny the application for lack of documentation. The more you can personally tell them I think also makes a big difference. If you have your doc behind you, it helps. Even though he followed their very specific exam instructions, the fact that he followed them to a T and reported every finding I am sure helped, as well.
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