Hi cf, I am so sorry you are dealing with RSD. RSD used to be called hand-shoulder syndrome-often it is the case of spread from the shoulder to the hand or hand to the shoulder. My first spread was to the shoulder following breast surgery. Then after long physical therapy and getting range of motion back of shoulder , it spread to hand. more therapy. I had delay of diagnosis and wrong diagnosis in hand, so have frozen hand-like a claw. It's so important to continue in therapy till we get range of motion back. They did sent me to ortho surgeon who wanted to operate, but I said no. My current Dr. said that would have been a huge mistake. At the end of therapy on my shoulder, the therapist said not to be surprised if the frozen shoulder moved to other shoulder-it did and more therapy. Besides physical therapy, I found swimming to be one of the best methods of gaining full range back. I'm sograteful for the mobility I have. I now have full body RSD or Generalized. I think the RSD started with surgery in 1996, diagnosed in 2000, now have internal RSD. I do as much as possible for stretching and exercise, swim, positive attitude, distraction actions, music, candles, reading, supporting others, I'm 62 married 43 years, supportive husband-more in recent years. It's very difficult for others to really understand this disorder.
I would encourage you to educate yourself as much as possible. rsdrx.com
is an excellent site. Dr. Hooshmand is retired but left his website up for us.
There are about 160 questions and his answers.
We are all different in how we respond to meds- I finally have an excellent Dr. the past 6 years. He is a neuro, internist, pharmacologist, does trial studies for pharmaceutical companies. I'm so grateful for one study I went on and now can sleep 10 hours every night. Because of the combination of meds, my pain meds have been lowered, I've gotten off 3200 mg of neurotin-the electric jerks, jolts didn't come back. I'm on high blood pressure meds.
RSD is an autonomic condition, meaning involuntary organs don't operate properly, like blood pressure, heart can be involved, lungs, A lot of us have high blood pressure due to the sympathetic nerve, and sometimes we drop low due to the para sympathetic nerve..
I've very cautious to continue to stretch, exercise to keep my mobility. Flares are bad, with weather changes or a fall etc. Please do your research and have a qualified Dr.
This is a wonderful group that are 'here' for you. Take care, loretta