Yes the looks I get when I do a quick explanation of CRPS ... I always smile and say I will live with it just a new way of living. Then I go home and sometimes 😭 cry. Just exhausting.

Lianne I really get what you're saying. Every time I explain what CRPS is the person I'm talking to looks at me as if I was a dead man walking. I just smile more. Like I always say, when you're facing losing everything you make sure you value everything you still have left.

Hi I have CRPS/RSDS going on 18 years. I had it just in my left leg but in the past year it went into my right leg. I don't know when it will stop or if will spread more. It's just a guessing game with me. I go to bed in pain and wake up with new pain. I'm sorry, I know this wasn't the answer you wanted to hear.

Personally I've been reasonably lucky and not had it mirror to the other wrist. It has spread a little further up the arm. As for when it stops. Unfortunately it's unlikely to stop.

Hi, I’ve had CRPS for seven years. It started in my right foot then quickly spread to my right ankle and leg then mirror to my left foot left ankle and leg and I now have it diagnosed a full body CRPS it is horrific. I also suffer the CRPS lesions which are so painful it feels like they’re burning from the inside out as if someone has thrown acid in my face they’re all over my face and I have them on the backs of of my upper legs as well. That is not much information on CIPS lesions because they but they have hell on Earth and the scarring is unsightly when in a flat up which seems to be most of the time just now with lesions I barely leave the house because I’m suffer terribly with anxiety and low self esteem due to the severity of the lesions. Does anyone else suffer these lesions?