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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 | 2 days 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 | 20 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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dcanada54 | @dcanada54 | 6 hours ago
In reply to @asteeleks "I'm trying the Qutenza Patch treatment to overload and shut the nerves down" + (show)
Profile picture for asteeleks @asteeleks

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

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@asteeleks Is that prescribed by a pain management specialist? This CRPS II is kicking my butt!

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dcanada54 | @dcanada54 | 6 hours ago
In reply to @grannyzoo "When seeking a pain management specialist, prioritize finding one who treats you with respect and attention,..." + (show)
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When seeking a pain management specialist, prioritize finding one who treats you with respect and attention, rather than rushing you in and out like cattle. It's essential to keep moving, no matter how much pain you may feel; consider starting water aerobics, especially if you're within the first six months of CRPS. Movement is crucial for your recovery. Additionally, eliminate all sugar from your diet immediately. It is my understanding that the earlier you catch this disease the more likely you are to get rid of it. I wish someone had told me that! Sugar is inflammatory and only exacerbates pain while hindering healing. I recall someone recently discussed a valuable video about CRPS—make sure to track that down. It is on this Mayo blog. Avoid red meats, stay hydrated, and drink plenty of water. No alchol.

Personally, I have a Boston Scientific implant for my back due to CRPS affecting my legs. One area where I’ve faced challenges is finding a neurologist who focuses on treating symptoms rather than just pain management. Search one out. I highly encourage you to seek out a teaching college/hospital knowledgeable about CRPS. My path led me from the Mayo Clinic nurse on call who sent me to the University of North Carolina, (during Covid) and I recommend you do the same. Research institutions that specialize in this disease and pain management, and reach out to them swiftly. Your health journey deserves this proactive approach! This morning I was listening to a UTube with Dr Pardeep Chopra. Look CRPS/RDS up on UTube. these programs are very insightful.Just keep moving and get off of ALL sugar.

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@grannyzoo who did you see at UNC? I’ve been going to Duke the past 14 years. Even though it’s been on my medical records it was never explained or treated. Thank you.

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dcanada54 | @dcanada54 | 6 hours ago
In reply to @caitlin9489 "@anon37227499 Yes, I was diagnosed with RSD, (aka CRPS, also Sudeck's Atrophy) in 2011. It started..." + (show)
Profile picture for caitlin9489 @caitlin9489

@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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@caitlin9489 Can you tell me the dosage you took of the CBD oil? Trying to treat this pain is overwhelming.

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caitlin9489 | @caitlin9489 | 3 hours ago
In reply to @dcanada54 "@caitlin9489 Can you tell me the dosage you took of the CBD oil? Trying to treat..." + (show)
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@caitlin9489 Can you tell me the dosage you took of the CBD oil? Trying to treat this pain is overwhelming.

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@dcanada54
The dosage I took that brought the pain under control, and then erased it, was 1500 mg a day of full spectrum CBD oil.
Full spectrum oil is an EXTRACTION of CBD cannabinoids.
Most of the CBD oil available for purchase is a tiny amount of CBD flower of isolate INFUSED into a carrier oil. This is usually a tiny dose of CBD, commonly 25 mg to 50 mg.
Just keep that in mind that if you are taking CBD infused in a carrier oil the actual dosage of CBD is too small to be effective against the neuropathic pain of RSD/CRPS.
The EXTRACTED, pure cannabinoids are a necessity to get a high enough dose.
I started small and worked my way up to 1500 mg. At 650 mg/ day there was already a substantial decrease in pain.
The research using CBD for neuropathic pain uses doses that are really too low to be effective.
I make my own, at home, cheap and easy
Hope that info helps.
Changed my life, needless to say.

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caitlin9489 | @caitlin9489 | 3 hours ago
In reply to @dcanada54 "@asteeleks Is that prescribed by a pain management specialist? This CRPS II is kicking my butt!" + (show)
Profile picture for dcanada54 @dcanada54

@asteeleks Is that prescribed by a pain management specialist? This CRPS II is kicking my butt!

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@dcanada54
No, nothing the pain management clinics did helped at all.
I started using the high dose CBD to help with schizophrenia symptoms.
The RSD pain literally melted away. Six years of not being able to pick up a coffee cup or turn off a light switch, the unbearable ache and burn, it got to the point that I couldn't dress myself or feed myself.
Within two weeks of the CBD oil the pain was noticeably decreasing. After three months I was able to shake someone's hand for the first time in years. That was amazing. I no longer have any RSD/crps pain at all, now. I now use my hands for hammering and chainsawing and riding motorcycles and drinking coffee, yay!! With no more pain.
I've taken a daily dose of 2500 mg now since 2019, with no side effects, except occasional dry mouth.
My bloodwork and health are monitored every three months for other conditions. The CBD has had no observable negative effects. I'm sane now too, without pharmaceuticals for schizophrenia, which is another advantage.
Good stuff .

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