Intractable Pain (IP) Doctors

Thanks, Colleen. I had no idea that Kratom has all these problems. I will be reading everything you attached. Sometimes my pain is too bad to just rely on Gabapentin. I only take Kratom about once or twice a week, tops, and so far, do not get any addictive cravings, side effects, or mood problems. But I still need to know what I am doing!!!!! So thank you so much. Pain is a monster, and I am always on a quest to feel better. I have even done Scrambler therapy, but the positive effects are beginning to lessen. Time for booster treatments, but so damn expensive. Thanks again for your work in posting all of this. I want to be informed. Do not need to have more problems!!!!!! Lori Renee

My personal experience is opioids is the only thing that reduces my pain which is very severe and seemingly intractable. Even then, they don't fully eliminate and they come with side effects. On the other side of things, antidepressants and anticonvulsants didn't help at all and produced side effects. By the way 'Ultram' is an opioid. Just less potent than oxycodone etc.

For those of us with pain, there is no help. After reading 60 some posts, I never read one that mentioned if anyone has gone to the Mayo Clinic seeking help. My husband and I went to Mayo Clinic in Scottsdale, AZ. for years until we moved too far away and unable to travel that far. I love Mayo and all the doctors there. I had my knee replacements there 20 years ago and still no problems. I can’t help but wonder what Mayo has to offer. There are people with worse problems than us with pain issues but many with pain are young and could be productive in so many ways if not for pain.
Arlene

I was diagnosed by my GP about 6 years ago and after he ran out of options he tried to refer me to Mayo in Rochester. I was turned down with a short trite note that they were unable to see where they could be of any benefit over what my family doctor had tried. Found that a little disturbing that my local doctor in a town of 7500 had the knowledge and resources of Mayo clinic but after talking with him again was told that idiopathic nerve issues are a needle in a haystack and Mayo would rather look at cases that are not quite so shot in the dark. His comment was, if the could perform surgery on you with a good chance of an outcome that would be good advertising you'd be in quickly. Good luck, I've not found any reliable relief for the burning and rocks in my shoes feeling and I look at everything new all the time.

I tried but unfortunately Mayo in MN turned me down after already being diagnosed with Small Fiber Poly Neuropathy. It is what it is.

Has there been any recent studies or treatments using Stem Cells

Welcome @kenjolley, I haven't seen any recent studies on stem cell therapy. I would be suspect of any stem cell therapy unless there is some major research behind it and it's not being done by some stand alone clinic. I think it's something not FDA regulated or approved and there is no evidence that it works.

Have you been diagnosed with Intractable Pain (IP)? Have you looked into stem cell treatments or done any research on them?

If you haven’t had any luck finding someone yet, there is are a few options in Washington, DC that might be able to help - let me know. If that’s still too far away for you, my other advice is: (a) find a Physiatrist instead of any of the other pain or spine doc [who mostly focus on making their money off of injections & procedures, especially for nerve pain; which frankly don’t provide any measurable long term improvement]. Since experts in Physiatry are trained in rehabilitative medicine, their approach to intractable pain is truly superior; and/or (b) investigate whether or not neuromodulation or nerve blocks might help your specific circumstances; giving pain meds less to address. I do note the Kratom suggests and concur with the very strong caution noted by Colleen. I’ve seen far too many EDS patients go down the Kratom path only to end up with many more problems than they started with. Last idea would be to find a board certified integrative medicine doctor with a proven track record (also one here in Columbia, MD and Annapolis; sorry still a trek for you) who has the ability to adapt and apply Dr. Tennant’s advice re using an amino acid cocktail etc. to improve pain management. FWIW Dr. Tennant’s approaches saved my life 10 years ago - when the medical rank and file were in the process of ‘writing me off’). Worth noting too that after 9 months my integrative expert began working with me via telemedicine (so less frequent in person visits). All my hopes something in these ideas may help!

I haven’t found any verifiable results published using stem cell therapy for intractable or nerve pain. On the whole, the majority of progress I and my med team have found in recent years is in the realm of neurostim, nerve blocks and neuromodultation. The most recent was from 2021 when a University Connecticut researcher came up with a novel neural stimulation protocol for treating chronic pain.

Hello @kodoshan, Welcome to Connect. Thanks for posting. Is this the article you mentioned? I thought I would share it for you since new members are not allowed to post links for a short period of time to prevent spamming.

-- ‘No Brain, No Pain’: UConn Researcher Develops Novel Neural Stimulation Protocol for Treating Chronic Pain: https://today.uconn.edu/2021/10/no-brain-no-pain-uconn-researcher-develops-novel-neural-stimulation-protocol-for-treating-chronic-pain/