Hi stief

Sorry it's all so confusing and scary at the moment. I remember feeling like my whole world had been thrown up in the air and scattered. Along with the pain and everything else, it's a terrifying time...hang on there though, because it does get easier to deal with.

I've been through a patch of intensive PT and am now on a much more casual, mostly-myself-at-home basis. I personally found intensive PT made me worse, it made my pain worse overall, and my burning etc symptoms worse. My physio then didnt know anything about crps and her mantra was 'no pain no gain' and she pushed me to do repetitive movements that caused my pain to flare. I've read a lot about CRPS as we all have lol, and I now get that the important thing is to keep generally active and exercise to your CRPS limits. Any movement causes some pain, so of course we have to push through to a certain extent - but any movement or exercise that makes your pain spike badly should be avoided, because exacerbating those really bad pain signals is what we are trying to avoid with the meds and pacing and other things we do to control our symptoms. Slow and steady improvement is the way to go...little and often .....it took me two years, but I'm getting there, and my movement is way better than a year ago when I was on crutches and in a wheelchair out of the house.

Now that I am with a better physio, he is leaving it much more to me and that's working a lot better. He has shown me mirror work, and the kind of exercises I need to do to strengthen my weak leg, and I have added in general strengthening (gentle) exercises called Qi Gong, and stretches. If I need some advice or things start going downhill then I can go back to him as needed. You do have to be very disciplined and not let things slide - regular exercise and movement is so important. I have an hour set aside each morning, and I do stretches, then Qi Gong and leg exercises, then self-massage. It's working really well for me - most of the time

I hope you find a method that works for you and starts to get things under more control. There's a very fine line between overdoing it and not doing enough!! There's nothing easy about this condition...and of course it's different for each one of us. We've all had to find a balance Good luck!! Let us know how you get on.

Bram.