Hi Penguin,
Welcome to Neurotalk! This is truly a place where you can share your feelings, fears, whatever if frustrating you or sharing anything that is helping you.
I had surgery and it was 4 years for me, when I was diagnosed with RSD (from the surgery) RSD is an autonomic condition, which means it affects the involuntary organs in your body and the Limbic System in your Brain. That explains why you can get an anxiety disorder or panic attacks. I did after the surgery and didn't know why. Our short term memory is affected as well as while talking, sometimes we can't grasp the word we are searching for or forget what we are talking about.l I was diagnosed with a neuclear med test with dye. It shows the damagae done to the bone. This was my hand. It was positive for RSD. I had delay in treatment to it is partially paralyzed. But with therapy and desensitization, I can cut my own food, dress my self etc. Early treatment is so important. I had a lot of physical therapy and had frozen shoulder in both shoulders, one at a time. I went into remission twice.
You will find som much comfort on this forum. Friends will encouragae you, give you a lot of valuable information. I'd encourage you to read read read. We all have various systems, not always the same.
I'm sorry your husband is gone. It must be difficult with a 3 year old and not feeling well, Having a pain Dr. is imperative. Meds work differently for different people. One important thing is to sleep well. You need your sleep to function.I take seroquel 300 mg. My Dr. just finished a 200 person trial for the pharmaceutical company. I take vicodin for pain. An anti-anxiety med is of great help as this is a disorder of the sympathetic nervous system. I take lorazepam and that keeps the SNS calmed down. I take two high blood pressure meds. RSD is also tied in with depression. I take Cymbalta 120 mg.. For years i took neurotin, then lyrica for the burning pain. They both cause weight gain. I gradually went off and my electric jolts, jerks, spasms didn't come back. I've only had a couple since January. Went off real slow. Was on 3200 mg. Neurotin.
The national organization for RSD is RSDSA It has a lot of good information. They had their annual meeting this year in Arizona. Under Support there is a place to put in your zip code and will give you name and phone number of closest support group in your area. Support groups are very encouraging and you may be able to get some local names of good Drs. therapists, massage therapists etc. In Florida, there was a Dr. very involved in RSD until he retired. He has his website up rsdrx Under puzzles, there are 140 questions by patients and his answers. Very informative.
Take care, we are all here for you, loretta