I am so sorry you have it so bad. I just have it in my toes and fingertips. If they are kept warm, I feel okay. It all happened after I had surgery, the nurses noticed it. I never knew it would be as bad as you have it. No ice Gee what bad advice. I wish I had some magical help for you. It sounds like you are in pain all the time.
I know how that feels. I have constant pain. I am at a level 8 most of the time and pain meds brings it down some. When I am real bad pain I get very cold and that goes away with a pain pill.
Does sitting in the sun help? What about heating pads? I have one that does on my feet. One I lay on and one for my back and neck too. They can be expensive to use all the time. I am looking for a solution. I can not use the ones that give moist heat that you heat in the microwave, they really bother me... I hope you do not live in the colder weather zones. Fall is coming here now, and I get cold in the fingers and toes ore. Wish I could take away all your pain and this terrible condition you have.