Hi Deb, Please feel free to write or ask questions as much as you like. There is a wealth of information on rsdrx.com Dr. Hooshmand from Florida is now retired, but has his website up. Under Puzzles List is 146 questions and his answers. I have full body RSD-14 years. Physical therapy and massage therapy and my own exercise , swimming, stretching have kept me mobile. I wasn't diagnosed for 4 years and was misdiagnosed when my left hand was injured, so delayed therapy caused only partial recovery. Partially paralyzed. I continue to especially move my hands and feet. At one time my toes started curling up off the ground and my Dr. had me get in the pool and everyday stretch them the opposite way, In 4 months they were touching the floor again. Even stretching in a warm bath tub helps.
We really have different depths of how react and how immobile we get, but desensitization is so important, massage therapy helped me immensely and physical therapy. Even though I wasn't diagnosed for 4 years, my physical therapy started within a week of my surgery that caused frozen shoulder (RSD) And I added massage therapy to it. 100 treatments each to get full range back. It was torture, strapped down with meds in me. I'm sorry you have ms also. Many seem to have multiple issues. I have fibromyalgia and trigeminal nerve disorder. Our immune systems are definetly affected so a healthy diet is so important. I also have rsd internally.
Besides healthy diet, sleep is imperative. My Dr. a neurologist, pharmacologist and psychiatrist just finished a 200 person study on a drug and fibromyalgia, it had a side effectiveness of restorative sleep. Before the drug, I was on ambien cr and went weeks not getting to sleep till 5-6 a.m.
New drug-I sleep 10 hours and because of the restorative value, I was able to cut my vicodin in half and lorazepam in half, from 6 pills dailey to 3.
Distraction is a real help. music you love, meditation, prayer, visualization, scented candles, natural essence, journaling, let yourself cry, sharing your feelings in a support group if possible or a close friend. RSDSA is the national organization, they have a place for you to put your zip code, and you'll get a name and phone number of closest support group. We meet once a month, and saturday we had a RN speak on superfoods and high anti-ozidant foods. Staying active, even in short intervals, is important. Positive thinking is important, Replace negative thoughts with positive ones. I'm going to buy the book, Always Looking Up, by Michael J Fox and his struggles with his handicap-Cerebral Palsy. Another great book is 'You can't Afford the Luxury of a Negative Thought' by Peter McWilliams
Adjusting to RSD is like the Grieving Process, Our life is changed and we need to allow ourselves to go thru the losses we experience, pain, and look
for what we can do. I found it very helpful to be in counseling. The past 5 plus years, I've had a wonderful Psychiatrist. In the 80's I found a psychologist I spent 2 plus years with, after the death of my parents and before RSD. This is something I don't believe is healthy to try and go it alone. I have found it so helpful and comforting to be connected with others with RSD.
Take care, your friend, loretta soft hugs