Hi Summertime,
We all know how difficult and overwhelming learning about rsd is. Somehow we learn a little by little and the gravity of the disorder sets in. Thankfully we don't learn about it entirely at once. And then we learn about this forum and reach out to others for help in coping with it. Please don't feel badly about asking questions and expressing how traumatizing it is. We have all been there and understand and want to help.
I have both hot and ice cold symptons and also the burning and terrible headaches. So yes, it's normal for many of us to have both.
For me, RSD started in my upper left quandrant after surgery, then spread to my upper right quandrant, then spread to my lower quandrants. For some people it spreads from left side to right side or half the body.
It really does help to keep active. Limbs can freeze up. Before I was correctly diagnosed, it was in my left hand and I didn't get therapy soon enough and my left hand is like a frozen claw. Therapy and keeping active, exercises in water, have kept my right hand and both feet moving.
Has your Dr. suggested a tens unit before surgery to see if the electrical pulses work good for you? It has controls to control the strength of the pulses and timing of the pulses. I had one and used it when my left hand was so bad. In therapy, they used different textures to desensitize my hand. The tens unit worked good for a long time.
How long have you had RSD? I'm sorry my memory is bad, but didn't you get it after surgery too? Did your surgeon warn you of the possibility to get RSD from the surgery?
If he did,i t should be in writing and you signed it. If he didn't let you know, some surgeries have a risk of RSD and it's an act of omission on the surgeons duties. My daughter is a court reporter and has done depositions for malpractice suits. I'm not suggesting you pursue this avenue of insurance coverage and recovering, but his insurance should have RSD worded in his malpractice insurance. I personally didn't pursue my misdiagnosis, but sometimes I wish I had. I never realized I would or could get this full body and not be able to work.
I hope you get your insurance to cover you. Take care, Loretta