Hi AZ-Di, I'm sorry you were told that you only have a touch of crps. I was just at my pm dr for a med check a few days ago and he was out so I saw a NP. I told her how much more pain I've been in and that I feel like I have spread and showed her the excessive hair growth on my arms. (my rsd started in my right wrist and hand, but has since spread to all of my limbs and stomach.) She said it's possible it's spread but that I'm doing better than other rsd patients they've seen. I was speechless. I couldn't believe she said that. I know there are worse out there, but that doesn't make my constant excruciating and spreading pain feel any better. Just like if you have a touch of rsd that doesn't make your pain feels any better. I think that what was said was incorrect. I will never see a NP again. Only my PM dr. I really like him. He's new in the practice and is more sensitive to what I'm going through.
As for they asking of your drs could do surgery on your rsd wrist to fix it, I wouldn't do it. My ortho dr and my pm dr and my neurologist all said to not let anyone touch my rsd site. Even accupuncture caused it to spread. I was told that doing surgery on the rsd site (even with IV NB) could cause it to spread and make it much much worse. My drs won't even consider it. If I were you I would try to get more opinions if you can. I got three and they all said NO. I have CRPS I and they still said NO. I don't know about CRPS II though. And maybe your drs could all tell your SS person how dangerous this can be. I believe that there is also alot of literature on "RSD Hope" about this. I hope whatever you decide to do, you will be okay. As for me, I will never have someone touch my original rsd site. Not even for blood pressure.
And my spread is progressing at a slower pace then in my original rsd site. My feet and other wrist and hand burn and are sore to the touch. I have mottling and swelling in my hands and excessive hair growth on both my arms. My toes are a little swollen and shiny and burn. The pain and symptoms in my other areas also aren't as severe as in my original rsd site, but they still hurt alot and sometimes I can't get out of bed until I take extra pain meds. (which my pm dr okay'd). I asked them about the new drug that the FDA will hopefully approve for rsd called Neurondrate (sp?). She threw the paper back at me and said she never heard of it and that I should see my rheum about it. I have osteopenia in my right hip and it treats that so I thought maybe they could give it to me to help me lessen the other meds I take and maybe even help my rsd to go into remissoin. But I felt completely dismissed and rushed out before I even got all of my prescriptions written. I also asked if I should try NB in my other areas that the spread is going to. The NP said to wait until spring because I'm in more pain in the winter and I should just keep taking my pain meds for now. Again, I felt dismissed. I won't see anyone but my PM DR from now on. (And even though my rsd wrist and hand look better, the pain is much worse and I have limited range of motion in my right wrist, hand and fingers still.) Anyway, I will pray that you will be able to find a dr who can help you to feel better. My thoughts are always with you. Take care my friend.