You are so kind. I have RSD in my inner ankle/foot/calf but now spread to both legs and up the knee. Also in my eyes and possible ear. I have been to so many neurologist,pain doc,internist I could go on. I have PN too. I will say that my best pain doctor even better then at Cleveland Clinic and UCLA came from a teaching hospital in my home town. He was the director of the pain area and was an anestesologist. Have you called the pain/anestesolgist dept of a teaching hospital in your area and explain you have RSD and does any pain doctor work more with that?
As for the swelling I am not sure but I wonder if once your off the med for awhile your body may adjust and even out. Though the amount you have of swelling sounds so extreme that it seems it is more then just meds. I do wonder though if you can find a treatment to help the rsd pain if it will help the swelling. Like for ex one girl who had the coma which I am not suggesting just sharing this story but anyhow she had horrible sores over all her body and they cleared up with the treatment and her pain did as well. Am I making sense?
Hang in there and thank you again for your thoughts