Hi Lisa, and welcome to Neurotalk. There are so many wonderful people here with compassion and so much education. Our combined experience and background with RSD will be of comfort to you and your daughters.
It is rare, but there are cases of spread of rsd without trauma. I've had RSD 15 years following surgery. Had two remissions over a year each. One with trauma and one without trauma. I am one of few that didn't have sensitivity. I attribute that to immediate physical therapy and massage therapy right after surgery. I had frozen shoulder following breast surgery. I really had RSD, but wasn't diagnosed for 4 years. I think the massage therapy though painful, helped prevent skin sensitivity issues.
I am completely mobile except one hand is only 50% mobile. But I'm grateful I can cut my own food, peel potatoes etc. I had a year-100 therapies each of physical and massage therapy following breast surgery. The remission was wonderful, but the therapist said it might go to other shoulder and it did. Did make sense, as surgery was on left side. Got into therapy again and remission of right side. Over a year later, I was water skiing and felt a pull in left hand. Misdiagnosed with RA, and negative tests for rheumatoid, so flew from Arizona to Oregon to a well know sports injury group, the hand Dr. said rsd in 1 minute. had nuclear med tests next day and confirmed. more therapy. Eventually went full body and now internally. I also have trigiminal nerve disorder . Also have fibromyalgia.
My Dr. from New York is brilliant. He is a neurologist, psychiatrist, and pharmacologist. My toes started curling up off the floor and he had me get into the pool every day and work my toes. In about 4 months, toes were touching the floor again. I'm so grateful.
There is a website with a lot of good information. It's rsdrx.com Dr. Hooshmand treated rsd for 40 years. He is now retired, but kept his website up and has another Dr take a lot of his patients. I would encourage you to read and research a lot. I've heard of children's hospital for rsd at the Cleveland Clinic, also one in Piladelphia.
My Dr. just built two clinics in Scottsdale and Paradise Valley, with HBOT in each of them. That is what I'm going to try. I just finished a 200 person trial study. I wasn't sleeping with ambien anymore, so he put me in the study.
He teaches also. I think HBOT is worth researching.
Support groups like here are wonderful, but also groups in person. If you go to RSDSA and put in your zipcode, you will receive a phone number and name of closest support group to you. The RSDSA has an annual meeting everyyear. Last year it was here in Scottsdale. One day for patients and one day for medical personnel.
Lisa, I am so sorry for this in your family. RSD is an autonomic disorder-therefore affecting involuntary organs. our body temperature, blood pressure both high and low. our immune system. I'm very cautions on eating healthy.
Oh, on the rsdrx.com website go to puzzles list. It is 146 questions to dr. Hooshmand and his answers. Very valuable information. Question on internal rsd is on 146 puzzle. Don't use ice. Take precautions before going to dentist. My dentist use antibiotics the day I go. Also I use gas mask to relax.
Lisa, RSD affects the Limbic part of your brain. Cause short term memory loss. We can start a statement then suddenly forget a word or what we were going to see. Anxiety is part of this, I take lorazepam, to help calm me. Something a lot of us do is see a counselor. This is such a life altering experience, and the pain so difficult to deal with, many of us have been helped in seeing a therapist. Mine is a neurologist, psychiatrist and pharmacologist. a wonderful combination as the right combination of meds is critical. Neurology knowledge is important.
Please let us know how we can help in any way. One of your new friends, loretta with big hugs