Hi Tintern, I am very sorry you are going thru the possibility of going out of remission. I, like yourself, had surgery that left me with frozen shoulder (really rsd) After a year of physio and massage therapy, I went into wonderful remission.. It was over a year. Although I wasn't diagnosed with RSD for 4 years, I now know I got it from the surgery. Anyway, it came back the the opposite shoulder-frozen shoulder in other side. More therapy and massage and another remission. Another year or more of remission-still didn't know it was RSD. While water skiing, I felt a pull in my left hand (original side)
misdiagnosed with Rheumatoid arthritis. Went to a ortho and diagnosed with RSD, backed up with nuclear med test to confirm. Since then it has spread-full body and internal. It's been 15 years now. I am mobile except for the left hand-the delay in therapy caused fingers to be frozen like a claw. Swimming was a huge benefit for me and massage therapy along with physio.
Your are welcome to ask me anything. Hope you find a good neurologist. For the past 6 years I have been seeing a great neuro, who also is a psychiatrist and pharmacologist. He really understands the mental and emotional adjustments we need to make and also the importance of the right meds. He is conservative on pain meds, but doesn't also me suffer. He does trial studies and very informed.
One of the best ways to find a good rsd Dr. is to see if there is a support group near you. They usually know who is most knowledgable. A site that I like for information is rsdrx.com puzzles list. It is Dr. Hooshmand's site from Florida who is now retired, but still has his website up. There are 150 some puzzles ( questions) with the Doc's answers.
I hope you don't have RSD back, but early treatment can put you back in remission. I probably wouldn't have been water skiing had I known I had RSD and what RSD would later do to me.
Take care, one of your new friends, loretta with big hugs