Hi Jenn,

It's your mind and body - the good thing is that you get to choose whether you believe all or some or none of the above.

Not saying CRPS/RSD/Sudeck's/causalgia/whatever the medical field wants to call it can't go full body, and isn't an awful thing to deal with, or that Jerie is wrong. It's definitely central nervous system related - which means that your beliefs play an even more central role.

Visioniosiv,
I'm sure you mean well when you said what you said, but I'm in this forum asking questions on things REALLY happening to me and seeing if there are others here who have experienced it. When you tell me "It's your mind and body - the good thing is that you get to choose whether you believe all or some or none of the above". Kinda makes me feel like you're saying I'm making these things up. I can assure you that I AM NOT MAKING ANY OF IT UP! I don't need pity or consoling. I'm looking to see if what's happened to me has happened to others so I can inform my docs correctly. There's not a whole bunch of docs here in Hawaii familiar with CRPS, so if I can guide my docs towards a better way to treat me then WHY NOT! I DO believe in the new symptoms I'm having and I'm not absolutely sure if it's because of the CRPS or something else. But I'm not sitting/laying here being a Hypercondriac at every little thing that I feel, these new issues have been happening for awhile. So with that said......please don't tell me my BELIEFS play into whether or not these symptoms are happening or not happening, I know they are happening and also do know that what you focus on is what you get BUT in my case I'm not focusing on it like you think I am, I'm merely asking questions. Your comment really didn't make me feel better at all and all it did was remind me of all the people/doctors I've encountered for the past 10 years who didn't believe me when I said something was wrong with me. I'm not sure what your intentions were but just an FYI....your comments made me feel worse than the burning sensations I constantly feel! THANKS FOR THAT!!!!

I'm sorry Jenn - you're right that I do mean well - I didn't mean to say that you're not experiencing what you are, or that it's just all in your head. I have been through similar stuff with doctors too. I was commenting more in reference to some of Jerie's post ie "this disease USUALLY spreads" and "full body RSD oven ON." From what I went through personally I found that reading and hearing scary/negative things influenced what I believed about RSD, which in turn made the actual symptoms worse. Was just trying to say that our beliefs play a big role in how we feel, and I'm really sorry that it came off as an attack on you. Hope you go from an 8-9 all the way back down to zero some day super soon.

Hi everyone,
Just wanted to clear a couple things up. One is I said "central oven on" which just meant it its displaying centrLized symptoms with core burning or internal type burning. It's about progression. I believe I had this diseased 12 years undiagnosed and had bouts of weird stuff dismissed by Drs for years. I had a foot surgery and I had a spontaneous spread body side of burning nerve pain. Truth is is wasn't an instantaneous manefestTion of RSD. It was a late stage diagnosis. It took 4 months to spread burning pain. It took dozens of nerve blocks and infusions to get any resemblance of health back. I'm still not healthy. I still have severe flare ups. Do what you need to do to get core burning under control and settle sympathetic maintIned burning down. Jen said she has had this disease a long time. I would get very proactive to slow it back down I was afraid because no one believed me and I had no support. I got a lot of good info here, you can too. My advise is probably what vision was implying. How you respond is everything. Don't get dumped, one thing at a time at dr. You need aggressive but I doubt you'll get it so keep stress down. Take sedatives if you have them. Look up central pain syndrome and see if you can relate to that. Drs have heard of that, so say things like you heard of central pain syndrome? My RSD is like that. They'll realize your pain situation then.