Hi krikit

My heart goes put to you. It's very hard to live with his condition, but in some ways it's even worse for those who love you and can't take that pain away...

It's important that she has a good pain management doc who is at least compassionate and prepared to listen to you both. It's often hard to find one who is very good with CRPS as it just isn't that common or well understood Ditto with her GP, and be prepared to try another if hers is making the situation worse than it needs to be!

Your best protection as a CRPS sufferer is always yourself, because knowing about this condition makes it a little easier to refuse or deflect the treatment sometimes offered by well-meaning but less-informed medics. Most doctors know next to nothing about it, so you need to try to learn as much as possible yourself. It's often worth printing off some guidelines from a reputable site and taking them to your appointments to give to them, asking them nicely (lol) if they would be interested...

Has she tried good ole Epsom salts (magnesium sulphate)? A lot of us use them (unperfumed), and they can really make a difference, even if only for a short while. They contain magnesium, which our bodies need for all sorts of reasons, and we often don't have enough. They also help to block pain signals by acting on calcium channels. Try a few tablespoons in a warm bath, or wrapping some in a damp cloth and putting it on the sore skin.

Pain meds can be almost as frightening as the pain sometimes I think, I'm lucky to be able to not take much at the moment, but that's mostly because so little works for me, and the side effects can be grim. If they don't really work I'd rather try to manage in other ways. Everyone is different, and I know for too many of us there isn't an option.

Do please try things like relaxation exercises and things with her. I was really skeptical about this initially, but it really does help. Some calm music, nice scents, and meditation really do help my pain. When we are in pain our bodies tense up, and when we are fighting that pain 24-7, every single day, we are like strung wire... it's really bad for your entire system. Regular relaxation exercises do help release some of that tension, and release natural endorphins that help to fight pain. Also try massage - very gentle and using plenty of natural oil to prevent extra pain, this can help tired and aching muscles too.

I have a regular morning routine which takes an hour every day. I start by gently stretching, and then complete a series of Qi Gong exercises (daily exercise is really important to keep your CRPS areas moving)- they are very gentle and are calming in themselves, but keep your body moving and more supple (there are seated versions for bad days). I then use some monoi oil to gently massage my legs and arms. I finish up with a session of meditation (I use the Mindfulness body scan, but you can download lots from iTunes) for about 20 minutes. At the end I am calmer, in less pain, and ready to face the day. I'm not saying everyone should do it, but finding something that helps and doing it regularly gives you back a bit of control in your life.

Your daughter is lucky to have such support take care of each other and let us know how she is doing. Please give her a gentle hug from me and tell her she's not alone.

Bram.