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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: 6 days ago | Replies (362)Comment receiving replies
Omg. I came here to ask if anyone knows anything about CRSP of the spine. I just saw it exists. All I can find are medical journals and as a nurse, I'm at an advantage but its all anecdotal about 1 or 2 cases. Not how it feels, how does if get diagnosed etc.
If you have mire info, how you found out it was in yoir spine and what that means/ feels like? I have lifelong back issues with 4 surgeries but recently fell and getting less and less able to walk. They offered a SCS but oh heck no! Nothing invasive with CRPS. Most Drs don't know as much as people on this thread. Spinal CRPS. Who knew. (I've been diagnosed as hips down - a covid spread from my feet - colon, ribcage and they think larynx. All except bowel being from covid inflammation, cytokine increase that never returned to normal.
Id live any info.on spinal crps anyone has.
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Oh my gosh getting into this system is like getting the lips off of a chicken! I have CRPS, too. Sorry to hear about your issues. First off, I’ve found a support group: FightTheFlame.org. Next, get off of all refined sugar, red meats, dairy. No alcohol. Watch citrus and root veggies and night shade ones. Eliminate all and slowly add them back on until you figure out what you can eat. As painful as it is MOVE. I’ve got an implant but mine is for my leg. Find a teaching hospital. I found the University of North Carolina in Chapel Hill and they were of great help. I was directed there by the Mayo Clinic in Jacksonville, FL. Contact Mayo…I called “nurse on call”. I was my own advocate. My implant is a Boston Scientific. I’ve had wonderful success after jumping some hurdles with my original representative. I’ve got a new representative that is fabulous. I’ve also had a temporary implant “Sprint” out of Beechwood, Ohio. It has been put in twice in my sciatica behind my left knee and I was allowed to use it for 90 days. It was a wonderful relief! Actually pulled the CRPS out of my right leg. Hope this helps. Contact FightTheFlame.org. Helps to know you aren’t alone!