After going thru alot of sites Ive realized that this disorder is really rare and noone knows exactly what to do with it. But for me that is not comfort. I was finally diagnosed a month ago after spending a year undergoing every test and procedure doctors could think of. Knowing that I'm not imagining things is a lil comfort but in no way has it made the constant pain go away. It has taken away my energy and my ability to want to do anything. I'm very frustrated and I'm really hoping someone will read this and somehow understand what I'm goin thru or have some advice for me.

Anyone, please.....