So far there has been no suggestion of using any drugs to treat the movement problems I have. I am slightly surprised because Baclofen is the screamingly obvious drug to try here but I have been wholly unimpressed by all of the medical "care" I have had so far so its no great shock!! In spite of all of the problems and the pain, I have gone back to work full-time and I doubt that I could continue in my job if I started to take a drug like Baclofen or diazepam. If I had to choose, I'd rather have my job and remain mentally sharp than try to medicate the movement problems and then struggle to maintain my cognitive abilities.

Unfortunately, I seem to have had the experience of falling into the "too hard" pile for the doctors I have seen and they all know little or nothing about CRPS. Instead of making my case unusual and interesting to them, it has the opposite effect - they can't get rid of me fast enough because it exposes their own limitations!!! I suspect it has been hampered by the fact that my treatment was all done privately initially so I was seeing docs who are more motivated by making extra cash on the side rather than academic or research clinicians who are motivated by seeing interesting cases. I think its also different when children are involved with difficult medical conditions - doctors seem to be more interested and responsive than with adults, especially in a specialist children's hospital like GOSH.

I am seeing a new PM doc soon so it'll be interesting to see what he has to say. The previous one told me that he wasn't aware of CRPS being associated with movement problems so that didn't fill me with much confidence (especially since when I first started to get the thumping great tremor in my right leg, he said that often happened with CRPS and he was confident that it would "go away"!!!). My neuro has never seen or treated CRPS and neither had the orthopaedic surgeon who did the surgery that kicked it all off (and he has just retired in his 60's). Great huh!!?