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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 10 hours ago | Replies (7067)Comment receiving replies
Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It also has spread to other parts of my body including internal systems. In fact, I visit my GI doctor tomorrow and though she has heard of CRPS, she has never heard of it affecting the body's sphincters so she probably won't be able to treat this very well. The orthopedic surgeon who messed up at the front of this told me that "pain is perception" while the plate he inserted was slicing my peroneal tendons. Try to find a pain doctor with experience of RSD/CRPS. Mine is very supportive. It is scary, but somehow it is necessary to lift up oneself and look for the good things that do exist though it can be extremely difficult to see through the pain and uncertainty. In terms of research, you have probably found that this is an area where much needs to be done and it feels like nothing is happening. I am in the process of participating in a longitudinal study of folks with RSD/CRPS. I have found that this site helps because those who are on it don't need any explanations and truly get it. Be strong.
Replies to "Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It..."
The 20-year study is being conducted under the auspices of RSDSA. You can go to their web site and find various research projects that they are supporting.
My CRPS started in my right ankle as well and I take those medications and others with pretty limited success. You might also want to check out CRPS: Princess in the Tower. KNow the name is kind of funky, but they have some good stuff. Think they are out of England. Hope this helps somewhat. With you in spirit
That's great information, Jane. It is so frustrating that the pain Docs that we are sent to have no idea what to do. My doctors keep saying that because CRPS effects so few people that the Medical Industry does not want to spend time and money on studies or cures.
Frustrating!!
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Hi Jane-
I'm wondering how you found your longitude study? I have had CRPS for almost 10 years. It started in my right foot and moved up my leg after a back surgery. There seems to be so little out there. I take oxycontin, lyrics, cymbalta... but none really seem to help and the pain just seems to progress. I live in San Diego and have been looking for studies with no luck. Would love to hear any suggestions.