[bluekrikit]

My daughter had a fall down her stairs three years ago (age 35) and knew immediately something was wrong with her leg...she went to a foot doctor who gave her an injection to stop the pain....except he only made it worse. Another injection was given at a pain clinic.. that too made it worse. Now, she is on strong pain killers that have so many side effects and I worry about damage to her liver and kidneys with these drugs...I just can't believe there is no cure for this horrible condition and just want my beautiful happy child back...just needed to vent my feelings and maybe get some ideas to help her.

[RSD ME]

Hi blue,

I'm so sorry about your daughter.
I would maybe see a neurologist and then a pain management dr to see what they could do to help her. Though I need my meds for the pain, there are other procedures that could maybe help that dont' involve meds. Physical Therapy is great too. I hope she feels better soon and hope you do too. Take care.

[zookester]

Originally Posted by bluekrikit

My daughter had a fall down her stairs three years ago (age 35) and knew immediately something was wrong with her leg...she went to a foot doctor who gave her an injection to stop the pain....except he only made it worse. Another injection was given at a pain clinic.. that too made it worse. Now, she is on strong pain killers that have so many side effects and I worry about damage to her liver and kidneys with these drugs...I just can't believe there is no cure for this horrible condition and just want my beautiful happy child back...just needed to vent my feelings and maybe get some ideas to help her.

Oh I am so sorry to hear about your daughter's fall and subsequent CRPS! Glad you found us though this is a great group for support.

Regarding meds.. I was worried about the same and can offer one suggestion that works for me better than any pill that I have tried and with much less chance of the same side effects you mention above. I'm on a Butrans patch (trans-dermal medication) a low continuous dose. It has made a big difference for me and since it is continuous I don't have the highs/lows with trying to stay on top of dosing. The patch is changed every 7 days. It might be worth discussing with her Pain Doctor.

She is lucky to have you for support!

[Brambledog]

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.