Ive lost the last DECADE of my life and a career I LOVED from this syndrome! I feel cheated and like its so unfair! I was a wild teenager and did a LOT of walking and standing while running away. I used to be able to walk MILES everyday. then I clamed down and in my 20's a small pain started in my foot and now my whole body seems in on the act. I then tried pain management and went to school for cosmetology. I made it thru 9 months of 8+ hours a day standing and using my hands. I got my license and went to work. After 6 months of walking miles for the bus carrying or hauling 10-20 pounds of tools for work I couldn't do it anymore. I finally thought to myself "its NOT okay to hurt this bad all the time and to hardly be able to move at the end of the day" I was actually having to "throw" one leg in front of the other at the end of the day getting home. Now my life is very different. I lay on the couch, I do light housework and sometimes go to the store. If I do anything more, I can "push thru" and get it done, but that means 1-3 days of doing NOTHING in order to recover. I just wish I had know that this would happen to me or could happen. Nobody EVER told me, no doctor not even my mom who's an occupational therapist knew or told me about FIS.
Now, even tho I have a doctor whos helping me with pain meds and anti spasticity drugs, I still have no "credible definitive medical diagnosis" for SSI and for my own peace of mind. I want to know whats compromised, what to expect, and what I can do (and not just exercise or physical therapy.) about things. But there are NO DOCTORS who deal with adult CP. Ive even had to EXPLAIN CP to a DOCTOR or 2! My doc thinks the best place to go is the Mayo Clinic in AZ. They might help but with no insurance(which my pre-existing condition excludes me from all but the most expensive of) the first VISIT fee is 650$. Not to mention airfare,hotel,food, and the costs of the tests and procedures. (and MRI at a DISCOUNT place is $500-1000$) So i guess its pie in the sky....Anyway Im SO glad to find a place to talk and share about this. More later,

DIVA