Well.... no offence but I would really dislike it if she was a spokesperson.. i mean..... honestly... can you imagine going - yeh, im in so much pain i can barely move etc etc etc and I can't do anything but yeh- that dancer on TV has it....yeh....

then try and explain why I can't move

If she really has it I am very sorry for her but also jealous that she has so much freedom. As it is the RSD is very sparse on full body RSD'ers with dystonia - so every reading of the literature I give friends means they go "....and you can't walk.........WHY?"

Temperature really affects me.... any change at all is agony, wind burns my skin, (as does rain, ice etce tc)... my chest and neck are bright red and burn whilst my fingers are blue and my arms burn - and my legs are ice cold to my hips and then I'm apparently ice cold to my stomach.. Also does anyone find they can't feel temperature properly? I have burnt my fingers so many times from not realising that what I am touching is hot - apparently thats cos my CNS is being attacked by the RSD...

Oh well.... (hope this makes sense... REALLY bad day atm but trying to keep going..)

rosie xxxxxxxxx