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RSD/CRPS

Posted by Anonymous @anon37227499, Nov 6, 2011

Does anyone have RSD/CRPS? Do you know if there's a current research study for this at the Mayo Clinic?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

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mille125 | @mille125 | Apr 20, 2025
In reply to @asteeleks "Has anyone been diagnosed with both neuropathy and CRPS. My Podiatrist and Neurologist diagnosed me with..." + (show)
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Has anyone been diagnosed with both neuropathy and CRPS. My Podiatrist and Neurologist diagnosed me with CRPS in my feet. I've had neuropathy for a few years (confirmed by EMG). My PC also agrees that I have both. My quality of life has gone down hill over the past year. Either the medication side effects or the pain keep me from doing things I love doing. Any help please?

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There is a new very promising and minimally invasive treatment called scrambler therapy.

PM me if you want to discuss.

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asteeleks | @asteeleks | Apr 21, 2025
In reply to @mille125 "There is a new very promising and minimally invasive treatment called scrambler therapy. PM me if..." + (show)
Profile picture for mille125 @mille125

There is a new very promising and minimally invasive treatment called scrambler therapy.

PM me if you want to discuss.

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I'm trying the Qutenza Patch treatment to overload and shut the nerves down

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harrie123 | @harrie123 | 1 day ago
In reply to @anon37227499 "Anyone out there with RSD/CRPS?" + (show)
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Anyone out there with RSD/CRPS?

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@anon37227499 Yes. Currently experiencing pain in right hand. I had a broken wrist last month and that was the instigator.
Had the same response after fracture of left thumb several years ago. Hard to describe the pain, isn’t it.

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dcanada54 | @dcanada54 | 1 day ago
In reply to @pfox "My daughter is 40, and suffers from CRPS - complex regional pain syndrome. Took her a..." + (show)
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My daughter is 40, and suffers from CRPS - complex regional pain syndrome. Took her a long time with many doctors from internists, neurologists, Gastroenterologists, etc - many who thought it was all in her head - but was finally diagnosed with CRPS. it is progressively getting worse and she lives in constant pain. I see where there are finally clinical trials going on around the country for an answer but they are only looking for those in the early stages... not advanced. And yes the only meds available are the opiods and that is becoming harder for those who suffer. It is tragic so many people will be overlooked because of this tragic abuse of meds in our country BUT everyone has different pain thresholds and all are not additive type persons... hopefully more will be done - and thank you for this forum - I am new to it but just maybe Mayo and/or our sharing will bring more information.....

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@pfox Recently diagnosed with CRPS II. It’s been on my medical chart for over 14 years, a new orthopedist explained what it was and since it had been so long I’d probably need neurosurgery. Trying to find medical help is ongoing and almost impossible. Best wishes to your daughter.😢

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caitlin9489 | @caitlin9489 | 6 hours ago
In reply to @anon37227499 "Anyone out there with RSD/CRPS?" + (show)
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Anyone out there with RSD/CRPS?

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@anon37227499
Yes, I was diagnosed with RSD, (aka CRPS, also Sudeck's Atrophy) in 2011. It started with a broken forearm, high speed accident. Bone didn't heal, non-union, fingers became huge blue sausages while in cast, then tendons in hand permanently contracted to claw shape, shoulder became frozen with adhesive capsuleitis, and finally RSD spread to left shoulder, arm and hand as well.
Astonishing, life ending, level 10 pain, 24/7 for six years, cycled through vast number of drugs/treatments which all failed.
Finally it stopped completely when I started taking daily high dosage full spectrum CBD oil to treat another condition.
I still take the daily CBD oil. The RSD symptoms and pain never returned.
It took about three months after starting the CBD oil for the pain to drop 50%, and a full year before pain and other symptoms were fully gone.
The contracted tendons and claw hand of course were permanent.

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