Hi fewdalord,
I started physical therapy and massage therapy real soon after surgery, The surgery was removal of two tumors in breast area and lymph glands. Following day arm doubled in size-pain etc. Sent to Rehab Dr. sent to p.t. It was torture, but stayed with it. I paid for an hour of massage as felt that would move it along faster and am glad it did. Stayed with it over a year and had nearly full range of motion from frozen shoulder, shooting pains etc.All was good, had the massage just prior to going to p.t. Was good for several months maybe a year. We moved from Oregon to AZ. They told me before leaving it's possible for it to move to the other should. Thought that sounded strange. Then it did moveto other shoulder. Started therapy and massage again. Wasn't as long this time. Back to tennis, water siiing etc.While water skiing at least a year later felt pull in my hand, Swelling, pain, Dr. said Rheu. arthritis. Didn't sound right so went toOregon ortho hand doc. Correctly diagnosed me in 1 min. followed up by tests in hospital. Started therapy , tens unit, and came back to AZ and got neurologist, more tests, meds, ortho hand Dr for third opinion and back into therapy, massage. Only got partial use of hand. It's frozen like a claw. Was frozen like a straight board. moved to other hand, ten feet and legs. Went to another neuro , psychiatrist, pharmacologist 3 in 1 doc that is very very good. That's when I found out I really got the RSD after the breast surgery. But I know i was in remission two times after the pt and massage. About a year each. Have full body and still moving. I swimming. This good Dr. saved my feet, they were turning upward curl and he gave me exercises in our pool, needs to e 86 degrees, not a problem in Arizona. My toes now touch the ground, and I do dailey stretching, eat good, use natural foods and vitamins with anti-oxidants, Anything to keep moving and circulation going.I have been tapering off on some drugs, but still need some. To be calm is so important. I use happy music, my kitty, good humor, reading positive attitude, meditation, visualization of beaches etc. We used to travel a lot. It's a bad thing, but I'm grateful for my life, family and friends. It's an automic disorder, so have high blood pressure and low blood pressure. Passed out from low blood pressure one morning, nearly died. Was out over an hour and my husband was upstairs. Couldn't get up, so crawled on stomach to hit on the door. paramedics could find a pulse and really scared my husband, but I was alive and stayed in icu 4 days. A friend here has had that happen 4 times. my pressure was 60/40
The pt. is painful for frozen shoulder and probably for any rsd, like my frozen hand, but ssoooooooo important to get use of limb back. Not give up, but don't let them get too aggressive either. Have they had experience with RSD? Mine did. I was strapped down and took pain meds before therapy and our daughter drove me.
Read as much as you can, READ READ talk to others, support group in town helps a lot. Blocks help some and make others worse, we are all different. It was 4 years before I was diagnosed so didn't have blocks and don't I would. I am going to try HBOT when my Dr. gets his two new clinics finished. Circulation is a big problem for us and it promotes healing. A couple I know bought their own units for their home dives.
It took me a long time to mentally emotionally adjust to full body and the pain etc. The good Drs. helped me adjust my mind and have some good days and some down days. Miss the old days, but grateful for the present. It could be worse. So many in the world going through tough times. Hope things go well with your treatment and be sure and ask lots of questions. Everyone is different and responds differently. Take care, loretta