Hi Keep Smilin,
Welcome, we are glad to have you join our family. Please know this is a safe caring group of friends, like yourself, having good days and very difficult daysl Regardless, we desire to help each other.
I'm sorry your SCS didn't work. Happy for you going to Drexel next spring. Sounds like you have done a ton of research.
Sounds like you are in considerable pain I personally don't believe we can reach a long last zero pain level, unless we are in remission. My RSD came following benign breast tumor surgery (2) Got frozen shoulder and started pt, but wasn't diagnosed for 4 years. After 100 pt , I did go into remission for at least a year. No pain= back to playing tennis, water skiing, snow skiing etc. It was torture-the physical therapy and 100 massage theray The pt group told me not to be surprised if I got frozen shoulder on the other side. Well we moved from Oregon to Arizona and after a few months, it did cross over-frozen shoulder in right side. More pt and massage therapy and pain. Didn't take as long this time a2nd remission. Back tennis, skiing etc. The 2nd remission lasted at least another year, (I had not been diagnosed with RSD- just frozen shoulder, shooting pains thru my back. While waterskiing, I felt a painful pull in my left hand (original surgery side) It swelled up terribly and Dr. said I had Rheumatoid Arthritis. I told him how could that be when my blood tests were negative for RA. So, flew back to Oregon to sports injury orthopedic hand specialist. He diagnosed me with RSD in less than a minute. sent me over to nuclear med test and it was confirmed. He started me on pt there in Oregon and ordered a tens unit. I came back to AZ and saw a neurologist-tests confirmed RSD saw hand orthopedic Dr who confirmed and went into therapy and hand densitsitization. I also did the hand desensitization at home. I took 6 plastic bowls and put cotton balls in one, sand in another, coffee grounds, rice, just different textures etc. Over a long period of time, I was able to use my hand. It is permanently partially paralyzed, but I can cut my food, button clothes etc. I'm very grateful for the use that I have. RSD used to be called shoulder -hand syndrome It then moved to other hand, and I got right back into therapy and have full use of my right hand. I have generalized or full body RSD now and a couple years ago, my toes started curling up off the floor, Dr. got me right into water therapy and I did the exercises every day. Toes are now touching the floor and I'm still mobile!!!Yeah It's been 14 years and I have a wonderful Dr. the last 5 years.
One thing off can put us into terrible flare and downward spiral. I wasn't sleeping-Ambien CR wasn't working. I wouldn't get to sleep till 5-6 in the A.M.
This really sent me in downward spiral. My Dr. was doing a 200 person study for a pharmaceutical company. The study took a strong drug and tried a low dose amount to see it's affect on fibromyalgia patients. The results are outstanding and will soon be published. Besides positive effect on fibro. it had an outstanding affect for restorative sleep. I went on it that same day. I stayed in bed 3 days, but I still sleep 9 hours straight. Because of the restorative sleep, my Dr. cut my anxiety med-lorazepam in half. He left it up to me the pain med vicodin. I cut it in half too. From 6 pills a day, I'm even down to two some days. I'm now getting out, driving, grocerys store errands. I still wait to drive a period of hours, because vicodin & lorazepam have an affect on us for driving. Can get a ticket if drive too soon after taking certain meds.
There is a good website rsdrx.com that under puzzles has a wealth of good information. Dr. Hooshmand is retired but still has website up
Hope the best for you and better pain control. What exercises are you able to do? Welcome again, and hope you find peace. loretta soft hugs