gramE, your thinking sounds very similar to my wife's dealing with this horrible pain. She's been dealing with RSD sinse 2002. She worked full time for 4 years trying to find a doctor who would treat her all the while losing her ability to articulate her condition to the doctors who, because of this, shyed a way from her. She kept her RSD a secret from the family for the first 2 years. 2006 she broke down and could not work any longer. She did receive benefits from her employer in which she filed for SSDI in 2008 and back dated her last day of work to Dec. 2006. I've posted on this site that it was a four year battle for me to push for her SSDI when in-fact she filed in 2008, It just seemed like 4 years because her last day was in 2006. Suzy just received, last Nov. 2, a full favorable desision. Just like gabbycakes she will receive 3.5 years of backpay starting from June 2007 not Dec. 2006 because of her short term disability from her employer. She will receive medicare too. We lost our health insurance back in Sept. 2009 and have been paying for her care out of pocket sinse. We were told that her medicare is retroactive and will be backdated and compensated for much of the out of pocket costs over the past year or so.

My best advice for you gramE is start gathering all your doctor records and have your husband and yourself read them very closely. You really need to move the doctors in the direction that will benefit you the most. Make sure your lawyer is an expert in SS law not a part timer. Make sure your lawyer gets all updated records and have them give you an oppinion in what lacks in those records. Update your records every 6 months or so because when it comes to crunch time, you and your lawyer should pretty much know what the outcome should be. If it is positive and you lose your case you'll have good grounds for an appeal everytime. The process is a bit more complicated than just records. Others I'm sure will chime in.
I hope you feel much better soon gramE!!!

jim