After many years of undiagnosed/misdiagnosed CRPS, I found a physician who actually knew what this disease was and definitively diagnosed me in 2009. I'm in Stage 3 and not only is pain management difficult, but from personal experience, I have developed other autoimmune conditions which don't make for a very pleasant scenario.

From CRPS, came Sjogren's Disease, Raynaud's Disease, and Trigeminal Neuralgia (many MDs do not believe TN is related to CRPS, but I totally disagree). Each of these diseases comes with it's own set of unique physical symptoms/impairments/pain.

I'm sure you've had tests to rule out the following, but just in case:
Lupus
MS
Lyme's Disease

Please post when you get some answers and I pray God leads you to the correct doctor/facility where a definitive diagnosis can be rubber-stamped on your file!

God Bless!
Sherry