Hello Waterfall,
Welcome to NeuroTalk.
Perhaps you could repost over on the
Reflex Sympathetic Dystrophy (RSD and CRPS)
The members there would be able to make suggestions I'm sure.
At the top of the forum are the "Sticky" threads too and they contain useful information, websites and other resources. They're worth checking.
I'm sorry you've gone so long without diagnosis. I hope you are able to find a knowledgeable doctor and some treatment for your painful condition.
take care.