Hey,

I've had RSD since I was 14 (I'm now just shy of 21), so I understand where you're coming from. For me, I kind of went down the same path it seems like you described. My RSD started in my right foot, but then it slowly spread to include all of my limbs, trunk, neck, and back. I did a nerve block (ick) and intense PT/OT. The best I can say in what helped me the most were PT and OT. However, I would find a PT/OT place that has successfully dealt with RSD before. It is definitely painful, but since you have age on your side, you may have some success. I was in a day-treatment program for 40 hours per week for about 4 months or so. I did have to go on home-bound with my school because of it, but I went to an in-patient and out-patient facility that had worked with a few RSD patients before. The one who got discharged right before I started had RSD in her left foot and was about 12 or 13 I think...Either way, she went through the same program as well and is now back dancing. Ultimately, I did learn how to walk again, though I definitely wasn't able to return back to gymnastics since it's such a high-impact sport.

Sorry, I just realized I rambled a bit...I guess what I'm trying to say is that you should (1) get a general doctor who you trust (on top of the PM doctor) and who is familiar with RSD...I know this might get expensive, but you don't have to see him or her frequently...it's more of a safety precaution so that you know you have a doctor who is familiar with you every step of the way...it also helps in regard to referrals in case you wind up needing one in the future; (2) don't get anymore pain blocks...if it didn't work the first few times, it more than likely won't work in the future; and (3) find a PT/OT place that's successfully dealt with RSD patients.


ps: Oh, no on the ice. Definite no.

pps: If you ever want to pm, just feel free to send me a message. I had RSD all through high school...I'm now in college and managing RSD on top of that, so I can definitely sympathize with you.