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Autoimmune illness and small fiber neuropathy
Neuropathy | Last Active: May 28 9:29am | Replies (51)Comment receiving replies
Hello, I to have been diagnosed as having SFN (but I believe it is more complicated than that). It doesn't really fall under any pattern for SFN. I have a burning like pain on my upper and lower torsos. It varies in intensity and location daily. I'm sure I have other symptoms that I can not pinpoint their origins. I have seen 3 neurologists a handful of chiropractors a rheumatologist and others with no causes or solutions. I have had cold laser treatments and acupuncture as well with no relief. Tried prescription drugs and the only thing that helps reduce the pain has been Advil. Right now I'm on a supplement plan from Nuphoria which has reduced the amount of Advil I take. Have you found any relief?
Replies to "Hello, I to have been diagnosed as having SFN (but I believe it is more complicated..."
You sound like me. Mine is purely left-sided, jumps or migrates around and increases in intensity throughout the day. Much like this paper from the Cleveland Clinic under the random patterns suggest… heading: https://www.ccjm.org/content/85/10/801
I got almost a year of nearly symptom-free relief with low-dose naltrexone (LDN) before my condition worsened. Might be worth checking it out.
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@bobcardi63 @penn. both of you seem to be looking for help and pain management. I would suggest that you contact one of these organizations:
https://rarediseases.info.nih.gov/
https://rarediseases.org/ They are both rare disease organization that have information and help with finding appropriate doctors in your area. You could each pick one to call and then share the information.
I hope this will work for you! Will you also let this group know what you learn?