Rich,
Yes yes yes!!! You could almost be my twin!
Where to get the diagnosis? Good question! From all I've read it would be Drexel University Neurology in Philadelphia, PA or Cleveland Clinic in Ohio. There may be more places that I'm not aware of. I will bet dollars to donuts that you DO have RSD/CRPS. Whatever you do, do NOT have ANYMORE surgery or ANY injections/procedures! Those things WILL make it worse! I'm STILL waiting for my diagnosis but I believe my current spine/pain doctor now believes I have it. He has refused ANY injections after he did one. I've had others by idiot PM and they got rid of me because I told them the injections were burning down my leg And then they were NASTY to me as well. I am losing my wonderful spine/pain doctor at least for a while because I lost my half decent ins. from a bitter divorce and courts not caring. I go to my spine doctor tomorrow for my last script of Percocet, which only takes the edge off. But I am scared to death of the pain next month!
MedicAID is a joke for this around my area. I got my SSI disability in only a few weeks years ago when I sent them photos of my hand. I lost my job, cake business and car because of all this burning pain! And we have NO water therapy AT ALL even 20 miles away! Mine never went away after a minor same day surgery in 2012 to have my hemorrhiods removed (sorry). One diagnosis after another! And now I look like a freak! Before I knew any better about surgery I had a root canal that made my whole mouth on fire! The ins. co. thought it was because I had a lot of dental work over the years and would ONLY pay to get my teeth extracted!!! Nothing else! OMG! So I thought that would stop this burning pain. WRONG! It is now worse and so bad that I can't even wear the dentures and eat properly!!!
Quote:
Originally Posted by guitarguy
Hello all,
In 2007 I had ulnar entrapment surgery of the left elbow. The surgery was successful in that the numbness and tingling in my fingers resolved, within 2 weeks after surgery pain began to build in this arm around the surgery site, the forearm and the hand. Along with this came tingling and then pain in my right foot, sometimes in all limbs but mostly the left arm where I had surgery and the right foot. Pain got so bad to where it became difficult to function, walk, etc. My surgeon said he had no idea and sent me on my way.
So now I started a quest to find why I had hellish pain in these limbs, along with pins and needles, skin color changes, skin mottling and temperature changes.
One doctor said it was Lyme disease and I ended up on antibiotics for 2 plus years. I was also diagnosed with MGUS which is a blood cell disorder which can cause neuropathic pain as well.
But after all these fruitless searches, it seems like CRPS to me.
So hear I am off and on taking opiates for chronic pain
I have read that CRPS and related pain is the highest on the chronic pain scale and I believe it, since the pain has left me crying at times, curled up in a ball, and at times feeling I could black out.
Opiates have done the best for my pain but I hate the side effects. Strenuous exercise also helps along with very hot water, but not always. None of these help when I am working at my desk or trying to sleep, so only opiates have helped give me a life back. I am not trying a natural plant called Kratom which is helping some.
Does anyone have advice on where to get a diagnosis of CRPS and treatment? I hear there are specific IV treatments that can help. I hate living on pain pills, but right now I have not found an alternative. I have tried every alternative you can imagine. My weight is good, diet is great, I am a health nut, tried Asian medicine, massage, you name it.
Looking for thoughts or suggestions.
Thanks,
Rich
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