Originally Posted by catra121

Thank you for the warning. I have definitely learned over the years with RSD that I have to ask questions and get specifics when it comes to ANY kind of therapy or treatment. My first PT used STIM and ICE on me (that was bad...very very bad) and at my next session I told her how bad it got and that I had learned ice was bad for RSD...so we did STIM and HEAT instead plus added ultrasound heat therapy at the beginning of the session. Most Physical Therapists I have worked with are very willing to discuss therapies and now that I know more about my condition (the incident mentioned above was right after I got the diagnosis)...I am better able to gauge what I can handle. I would never let someone use a metal tool on me for PT because aside from the fact that the pressure could hurt...metal gets COLD! But in the beginning I wouldn't have known that. Desensitization therapy worked wonders though...despite its being very painful to go through. It helped to normalize sensations and even though I am still VERY sensitive to the touch...I can now tolerate a lot more than I could before.

Thank you for sharing your experience. I wish it were easier so that once we know we have RSD there would just be a list of things that are ok or not...but we're all different and it has taken me YEARS to learn my limits and how to balance things (ie...is a particular activity WORTH the pain is will cause...what else will I have to NOT do if I do this one things, etc). And I'm still learning as the condition changes, spreads, and worsens. Mostly I have learned that no one knows my body like me and I HAVE to speak up for myself because the people around me aren't psychic. I have a hard time speaking up for myself though...so it's something I have to constantly work on.

Originally Posted by Brightcloud

Catra121,
I appreciated your kind, empathetic response. I am also having severe insomnia, so it is sometimes hard to be as assertive as I need to be when sleep deprived. I need to work on that also.