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DiscussionWant to talk with others. Have you found relief from CRPS?
Chronic Pain | Last Active: Jul 10 6:30am | Replies (235)Comment receiving replies
Replies to "Thank you for responding. Everything that you just said is so familiar. Sometimes I'm so overwhelmed...."
I hope I haven't responded here before but I've had CRPS for 45 years. It steals your life. I was 24 when I woke from durgery with a huge, red, burning foot and was diagnosed immediately which is unusual for now very unusual that the dr knew right away back in 1979.
I'm now 69, it started in left foot, then to right foot after a bad fall, hips down after a big spread from covid. Gastro tells me I haven't had IBS for 30 years, its a spread to my colon. They say I have it in my ribcage and larynx after covid as well.
I am trying to accept a wheelchair is next. For some of my life I was in remission I think but it was preinternet and I still didn't know anything except to accept it and walk with crutches my whole life.
I fell and just found out yesterday that I tore the labrum in my hip. Probably will end up with a torn labrum. There are 2 great drs on you tube who specialize in CRPS. Their lectures are videotaped for they aren't short vids but well worth watching so yoy kniw if the treatment they are offering is accepted practice. Injections are NOT accepted practice as they can cause a spread. Spinal cord stimulators are not recommended as the pain is not in your actual body anymore, its a pain pathway issue in your brain.
The one thjng I KNOW anf they are very strong on is Never have surgery without ketamine anesthesia and always have a nerve block when possible so your brain isn't feeling the surgical pain. Even when you are asleep, your brain feels pain and can cause a spread.
Go on youtube and find the two men who are drs doing lectures. Its a time investment bit this is our lives we are talking about. Someone who heard about it are not experts and can make things worse. This disease can get worse if you can believe it.
Ketamine IV is helping when its in the early stages but very very expensive. I yoy have a lot if cash to.invest, check out spero clinic? I don't know if I believe the hype but some say they are better.
Stay away from anyone who says they can cure it with surgery. More scar tissue, more spread and the pain is not in your body! Hope this helps even though I want to say, in direct answer to your question. I have neve found anything to help, but I know a lot about what can make it worse.
Also check out Low Dose Naltexone LDN. If interested in using it INSTEAD of pain meds as it renders them useless, only get it from a dr who knows what they are doing. Any dr who tries to start you at 4.5 mg, doesn't know what they are doing. Do your own due diligence about LDN, only listen to dr experts, the same I was talking aboit above. LDN is a years to rest of life daily commitment and I didn't kniw it was helping till I stopped taking it for surgery. Wow, it was helping.
My best. CRPS is a bear. Wish I had better news. There are other threads here about it. Life can be livable.