RSD/CRPS

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?

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

PM me if you want to discuss.

Anyone out there with RSD/CRPS?

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.....

Anyone out there with RSD/CRPS?

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

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.

@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.