I sympathize, I have a variation on fibromyalgia myself (as do my mother and my grandfather), but fortunately it only flares up from time to time. Right at the moment, however, I'm pretty much down for the count with gallstone-induced cholecystitis and secondary chronic pancreatitis. I'm waiting to get my gallbladder taken out and I've had to cut my work hours down as much as possible due to pain induced fatigue.
As a small business owner, I don't have insurance and I'm dealing with applying for Medicaid to cover the surgery. It's not been fun. I feel for you.
I applied for SSI in November of 2009. They denied me. I appealed the decision. I did not get my appeal hearing in front of an Administrative Law Judge until April 26th 2011. The judge didn't officially deny my claim until August 15th. I appealed the decision so the Appeals Council would review it. My case wasn't reviewed until last month.
The Appeals Council ruled that the judge ignored substantial evidence as well as made the ruling without the input of Vocational experts [ which is supposed to be required ]. However, instead of just approving my claim, the Appeals Council decided to kick my case back down for a new hearing. It is possible it could even be in front of the same incompetent Judge - I hope not though.
What is even worse about my issue? In January of last year the state that I live ruled that I am disabled and granted me Medicaid. They denied my original application but I appealed of course. I then had an appeals hearing with the Medicaid ALJ . This judge ruled in my favor and agreed that I am disabled.
So..... The Medicaid ALJ had exactly the same medical records as the S.S ALJ in order to make a determination... yet I got two different ruling outcomes - makes total sense right? I am disabled but I am not?