I think one of the reasons RSD/CRPS is so tricky and often hard for the medical community to understand, is because no one case is the same and no one treatment works for everyone.

RSD/CRPS effects everyone in different ways. I have RSD/CRPS in my Belly and my legs. My belly was as a result of surgery and was diagnosed within 6 months of the surgery. My legs, not so much. The RSD/CRPS in my legs is from broken bones and took 6 years to get a proper diagnosis. My RSD/CRPS also effects my immune system.

Ditto with the treatments.
For my stomache I CHOSE to be a test dummie of sorts and tried a relatively unknown and unconventional treatment that my neurologist suggested : Botox. It was so worth it. Botox changed my life and made my stomache pain go from an 8 to a 4, with occasional flares, as long as I keep having it done every 8 weeks. It isn't for everyone, but I was at a point were I was willing to try almost anything. At the time of diagnosis, I was a young military wife living in a foreign country with a deployed husband, no car, etc-- the "world was on my shoulders per say". So, Botox was worth a try.

As for my legs--- we're still working on those ! I have some sort of blocks scheduled for later this week. My pain levels start at a 4 each day and peak at about an 8 at night. Effects my sleep A LOT.

I am also on some of the more "traditional" treatments : Neurontin and Elavil. They help keep with the nerve pain, allodynia and "hot" feelings. My drs and I are constantly playing with the dosages of those-- too high of dose and I am a zombie with no memory, too low and my pain sky rockets.

As for doctors and medical professionals-- I've run the gammut of good to horrible. My wonderful neurologist overseas diagnosed me-- he was knoweledgeable and helpful. I moved back to the US and my pcp and first Neurologist was clueless and not compassionate. VERY, VERY frustrating. I was referred out to a Pain Management specialist. He was OK, but took no time with me and offered no explanations or reviewed my case. Big red flag. Very Frustrating. I got a new neurologist--- I am seeing a neurologist for my epilepsy, she knows about RSD/CRPS, but doesn't want to treat it-- she prefers to stick to treating my seizures. Switched to a new pain management dr--- he and his team seem to have a much better grasp on RSD/CRPS than my first PM dr. But, they are affiliated with a major medical center. I am still getting to know them, and their philosphy so it will take time, BUT, at least they are treating it.

Sometimes you have to pick and choose your battles. Treatment or complete understanding ? It can be a tough call, but I'd rather have treatment and some understanding vs nothing at all.

Just as drs have to be willing to step outside their comfort zone and be willing to learn, so do we as patients and be open to trying new things-- even if means being a test dummie from time to time.

L2L