Hey Susan

Sorry - I tried to type an email last night but the computer deleted it - VERY frustrating.

I do understand the type of pain that you are going through - when I first got this I could stand nothing touching my arms or legs. I had to wear very tiny shorts and vest tops - which is NOT good in the UK. I couldn't bear to go out of the house because the air might touch me and I was scared of sleep in case my arms or legs or anytihng would touch the bed. I used to sleep with my arms and legs hanging over the bed in case I touched anything.

However.. there are some meds that can help - such as calcium channel blockers like clonidine - which has helped. However, it is desensitiastion which really works - I PROMISE you that the pain is worth it. Seriously, before I started I NEVER believed I would be able to toucha keyboard again, put my feet on the floor, bear to stand anything touch me, be able to go outside etc... I REALLY never believed I would again. But I can now.

Desensitisation involves getting the nerves used to being touched again - so it means starting with a soft fabric and working upwards- I started with fleece - we started with just putting my hand on it, then moved on to trying to rub my skin with it, then moved on to harsher fabrics etc.. The same is also done with tactile things - like dry pasta, peas etc etc.

Very slowly I learnt that if I could get the sock/ trousers/ sleeve, whatever on and then stay very very still it didn't hurt as much (I have cold RSD so I am always freezing).

The other thing I have found helps with desense is using the softest fabrics and then soaking things in conditioner - my socks are the softest things ever and my carers wash them in bowls of conditioner so they stay really soft and loose.

I know this isn't much help - but if you need someone to talk to about this then I do understand.

Take Care

Rosie xxxx