Dear Lori,

My RSD started with a shoulder injury in 11/2006 and repeat shoulder surgeries. I was initially diagnosed by my ortho surgeon in 6/2008, the diagnosis has been confirmed by 4 additional pain management docs that I've consulted since then in my journey to get better.

I would urge you to try to find the best pain management doc and/or anesthesiologist that you can. Search for someone that is board certified, with a large city hospital's pain clinic, or in a well known teaching univeristy's hospital. Are you close to DC? George Washington University and Georgetown hospitals both have good reputations.

My internal issues occurred after my RSD spread from my upper right extremity to my neck, my head, and my right leg. But I have never experienced swelling such as yours - to the contrary, I LOST a ton of weight with my RSD and became pretty thin until just recently, when I completed 20 low dose ketamine infusion treatments and tapered off most of my opiod meds. I've just started eating more in the last 10 days or so.

My right leg is still swollen, but it's only about a few inches wider than the other leg, and wouldn't add up to much in pounds. And my arms, shoulder, and neck are terribly thin compared to when I was younger, when I was a fantastic swimmer and had a great build, because of atrophy from disuse.

There is a lot of great research info about RSD on the RSDSA.org website - I would urge you to spend some time picking through their database. You might find something that gives you some insight into your condition.

The best of luck to you. XOXOX Sandy