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Non-Length Dependent Small Fiber Neuropathy
Neuropathy | Last Active: Oct 4 4:36pm | Replies (131)Comment receiving replies
I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al. I don’t tolerate medication well and so I’m afraid to try them.
I do take LDN, but I see you were taking it, and it mysteriously stopped working. Would you try a higher dose? You didn’t mention your dosage, but I used to take 4.5 mg and increased to 6 mg.
One thing you could talk to your neurologist about (if you have one) would be testing you for the FGFR3 antibody. There’s ongoing research at Washington University in St. Louis on this antibody. Your sample would have to be tested there. It’s associated with small fiber sensory neuropathy. If you have abnormally high levels of the antibody, you may qualify for IVIG or plasmapherisis (sp?). There’s not much research, and it’s hard to get it covered by insurance, but it’s intriguing if you truly want to try very medical intervention. I’m considering it.
Otherwise, I’ve had good success with PT, specifically for chronic pain (graded motor imagery) and/or you may want to consider a chronic pain rehabilitation similar to what Mayo offers if you’re not comfortable with medication (I am not). Or a pain management doctor, as @daj3333 mentioned.
It is tough and really unfair, both that this happened and that the medical system is not set up for treating chronic pain conditions. There may still be options out there. It stinks it takes so much digging to get to them, but we’re with you and can relate.
Replies to "I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al...."
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!
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Thank you very much. I have tested negative for FGFR3 antibody, so I will probable not be eligible for IVIG. I don't think that I could afford it to be honest ... Were you positive to this?
For how long have you had symptoms?
I feel like pain management doctors will give the medications that I keep refusing. I don't want anything that will make me numb, dumb or fat. I have tried anti depressant in the past and it was a disaster (gained 50 pounds!) to stop them.