Hi Leiea and welcome, you are doing just fine with english. I am so very sorry you have been diagnosed with RSD. That happened to me 15 years ago following surgery. It started with frozen shoulder and now is full body or generalized and also internal
Even though I wasn't diagnosed for 4 years, I started physical therapy and massage therapy to regain use of frozen shoulder. That took a year of very painful treatments.
I had dystonia on a dailey regular basis. It was when I was relaxing-watching TV or my legs and arms would fly up. RSD is an autonomic disorder, meaning your internal organs are involuntary in motion-movement. This would also happen at night during a sound sleep. I had electric shocks, lifting my head right off the pillow. The jerks, jolts, spasms would come out of a sound sleep. No way of knowing when they would come. the head, legs, arms, My Dr. upped my anti-seizure meds-neurotin up to 3200 mg a day. This med, causes weight gain. The high increase in med, nearly stopped the involuntary motion of limbs. I went off the meds gradually a couple years ago and rarely have the involuntary jerks.
I believe somethings that helps me is he added anti-anxiety med to my routine meds. lorazepam 4 pills a day. Also I wasn't sleeping well at all, would be awake all night long till 6 pm. My Dr. put me on a trial study for seroquel xr and I sleep 10 hours a day. The restorative sleep mellows out the sympathetic nervous system which is good.
At one time, my toes started curling up-not touching the floor. My Dr. had me dailey swim and squeeze my toes while swimming. After about 4 months, the toes were touching the floor again. Swimming pool needs to be 86 degrees.
I hope this is helpful. Massage therapy and physical therapy has kept me mobile with the exception of my left hand. It is limited in ROM. There was misdiagnosis and delay of treatment. I still do stretching and exercise dailey.
Swimming has actually been the best form of exercise for me. Also massage therapy. Our lymph glands tend to swell up and retain inflammation. Lymphatic massage is a wonderful way too keep the lymph system clean.Usually insurance companies don't pay for it. But I had a surgeon want to operate on frozen shoulder and I still would need physical therapy. I had been paying for massage therapy for 6 months. I gave the insurance company choice of surgery or massage therapy. They said they would be happy to pay for massage therapy. I hadn't been diagnosed with RSD and stll wouldn't have had surgery, but was glad the insurance company agreed to do what I felt was best.
The only other meds I am on are two high blood pressure, vicodin for pain and going to get a compounding cream for skin issues---ketamine, lidocain, anti-inflammatories ???
This group of caring supportive friends are truly interesting in being helpful.Hope you stay with us. one of your new friends, loretta