Hi Brooke and welcome to neurotalk
I am so very sorry you are having RSD symptoms. I got RSD 14 years ago following surgery, but wasn't diagnosed for 4 years. I got frozen shoulder after the surgery and they sent me right into physical therapy thank goodness. It took a 100 treatments, but got full range of motion back. went into remission, then it moved to other shoulder-more therapy,remission. While I was having physical therapy, I did an hour of massage therapy on my own. The physical therapy was painful, so given pain med prior to therapy. About a year or so after my 2nd frozen shoulder I went into remission again. At least a year later, I was water skiing and felt a pull in my left hand. RSD used to be called Shoulder Hand Syndrome. My hand became paralyzed, flat as a board. Was misdiagnosed as having rheumatoid arthritis, even tho the texts were negative. Went to orthopedic sports injury group a couple states away and saw the hand Dr. He walked in the room and in less than a minute said RSD-Sent me to the hospital for a nuclear med test- That's like an x-ray with dye-it showed the bone degeneration-proof of RSD. Got started with physical therapy next day. Came back to Arizona =saw neurologist more tests-positive for RSD Saw a orthopedic hand specialist, confirmed, and started physical therapy and Desensitization-very very important.
It's funny after 100 physical therapy treatments and 100 massage treatments and had full range of motion back, we were moving to Arizona, my therapist said before we left, don't be surprised if it goes into the other shoulder. I thought that sounded so strange. After at least a year of remission, that's what happened- other shoulder.
RSD is an autonomic disorder, meaning it involves the involuntary internal organs. Our body temperature,(we sweat a lot) or can get ice cold. Our blood pressure can go high (sympathetic nervous system) or go LOW-the para sympathetic nervous system. --passing out. I've passed out once from low blood pressure 60/40 We have memory problems, forget words while we are speaking, anxiety/panic attacks , electric shocks, jerks, spasms are common. The Limbic part of our brain is involved-depression, decision making process is involved,
It's important to listen to your body, keep moving, swimming, water therapy is easier on the body. Temp should be 86 degrees. Streatching
is important, meditation, prayer, journaling, listening to music. walking, candles, epson salt bathes. It's important to try and stay in a calm frame of mind. Some people feel an anti-anxiety med is just as important as a pain med. Anti-depressants work on nerve pain. I take 120 mg of Cymbalta
I take vicodin for pain two blood pressure meds. Seroquel 300mg for sleep. Lorazepam for anti-anxiety.
I would like to encourage you to read as much as possible. Take care, and please keep in touch. It's important to have support. You can go to RSDSA and under Support you can punch that. There is a place you can put your zip code and it will give you the name and phone number of the community support group leader closest to where you live. They are very encouraging and you can learn a lot.
5 years ago when I was diagnosed generalized or full body, my neurologist suggested i see a psychiatrist. I'm glad I did. I still see him once a month. He actually manages my pain. He is a neurologist, pharmacologist and psychiatrist. He has helped me cope with the losses that come with RSD and have a good frame of mind and look for things to be grateful for.
I'm sorry again youo have this at such a young age. My heart goes out to you and your family. Please keep in touch. Your friend, loretta soft hugs
