Dear Rogue,

It does sound like you have been handed a really tough decision to make, and like Joan I would agree that quality of life comes first... but in the end, that is a really horribly hard decision you will have to make with you, and your family. Would things like IV immunoglobin help at all? It sucks that the dose cannot be adjusted and that it causes such horrible side effects.

I can't think of anything I can suggest which will help lighten the load you are going through or offer any useful answers, except whether a new form of pain control, such as Prialt, may be able to control the pain to a higher extent so that you can take the drugs? I don't know, just random suggestions I suppose. Anyway, there are days when you need to vent, we all have them, so go for it on here - at least we understand, to some small degree, what you are going through, even if we only understand the RSD.

It sounds like you were blessed to find Micheal and he sounds like a wonderful hubby/ partner (not sure which!)

Lots of love

Frogga xxxxxxxxxxxxxxx