Connect
← Return to Non-Length Dependent Small Fiber Neuropathy
Discussion
Non-Length Dependent Small Fiber Neuropathy
Neuropathy | Last Active: Nov 27 9:39am | Replies (135)Comment receiving replies
Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55 mentions, LDN worked, then it didn't. Maybe tweaking the dose will help.
Management looks different for each person. I agree, the medical system is not set up for treating chronic conditions and how people are affected by them through a comprehensive manner. No specialist gives strategies and tools along side a prescription. It took me a lot of trial and error since being diagnosed with SFN and CSS.
@daj3333, and others who are struggling with neuropathies and chronic pain disorder -
Mayo Clinic's Pain Rehabilitation Center was truly a game changer for me and may be worth consideration. Here's an over view of the program which is offered at all 3 Mayo locations - Minnesota, Florida and Arizona:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
If you're curious about others experience at the PRC, these conversations may be helpful -
Mayo Clinic Pain Rehab Center: Whats your experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/
Mayo Clinic Pain Rehab: Signing off and my comeback afterwards-
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
And for the cherry on top, Dr. Sletten who heads up Florida's PRC, breaks down chronic vs acute among much more in this video:
Dr. Christopher Sletten - Central Sensitization Syndrome:
We're all in this together and certainly not alone. Strength in numbers and sharing. I look forward to hearing feedback, insight or questions. Have a pleasant evening. Stay hopeful!
Replies to "Hi @emo, it's wonderful you're having success with PT and managing symptoms with LDN. Like @stella55..."
Do you have to be a patient at Mayo to get an appointment at their pain rehab center. I was unable to get an appointment with a neurologist at Mayo in Jacksonville
Connect
Thanks for sharing! I may be an outlier who hasn’t completed a chronic pain rehabilitation program, but is still a chronic pain rehab, or at the very least a “central sensitization awareness” evangelist.
I believe I’ve mentioned this before, but the program nearest to me which is also very reputable just isn’t/wasn’t accessible for me. I got very lucky and the stars aligned, and I had a PT and health psychologist who taught me about central sensitization, and we worked together to customize a plan to improve my pain and quality of life.
I do so wish more people and more providers would be more familiar with central sensitivity, the biopsychosocial model of pain in practice and not just in theory so that more of us in pain could benefit and know there are other highly effective (and in some cases in my opinion, better and safer!) options other than a pill.
I have some pain that’s improved that I’ll never know for sure but I’m fairly certain would never have improved with medication. I always would have needed pain rehab (or what I call “chronic pain PT” because most of my work came from PT), which makes me feel so grateful I was able to have that experience even if it was less conventional.
I really, really encourage folks in pain to consider a program like Mayo’s chronic pain program, and if that’s not possible to look into ways to implement aspects of it on your own or with resources in your area. I don’t think you’ll regret it.