Autoimmune illness and small fiber neuropathy

Posted by Machak @machak, Jul 15, 2021

Greetings,

I was diagnosed over a long period of searching for reasons for a wide range of symptoms with Lupus/Sjogren’s Syndrome, and Small Fiber Neuropahy. My question was this: Can anyone point to some good resources for sfnp and autoimmune diseases? I am a doctoral health scientist, but very little is showing up in my usual resources.

Briefly, I started out with an elevated right hemidiaphram that went away before the sniff test, but showed up more and more frequently until they were able to see it paralyzed/paresis on the sniff test. This can last from days to weeks to up to 5months one year, but it comes bask (so far). Lung capacity can drop from over 5L in the inspirometer to 3.5L with no warning. In trying to find answers hey did a skin biopsy which “was indicative of small fiber neuropathy”, but no clue as to why. Eventually as symptoms build up through the years (difficulty swallowing, heart palpitations, temperature regulation, dry eyes, dry mouth, prickle/burning pains in various locations, joint sinovitis, to name a few) they came down to Lupus and Sjögren’s syndrome. Symptoms have slowly progressed, getting worse year by year until I had to retire early from CDC. After this long journey, I am still looking for how all of these things impact each other and “work together”, but my doctors all look at their one piece of the puzzle. I appreciate any leads you could share.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Amanda Roe | @amandajro | Jun 23, 2023

In reply to @abhishek80 "Please share experiences of sjorgen with neuropathy!and what things helped" + (show)

Hello @abhishek80. You will notice that I have moved your post into an existing discussion that you can find here:
- Autoimmune illness and small fiber neuropathy: https://connect.mayoclinic.org/discussion/autoimmune-illness-and-small-fiber-neuropathy/

Do you have Sjogren's and neuropathy?

kle | @kle | Jun 24, 2023

Hi, I have heard ozone therapy, infrared light therapy and plasma exchange to be very helpful with autoimmune diseases. Has anyone have experience with these and can share? I have idiopathic SFN that is not improving and was wondering if these therapy may be helpful.

criscros21 | @criscros21 | Jan 10 3:09pm

In response to the original comment, I also feel like each of my doctor’s is focused on their slice of practice. Only after reviewing my old medical records today did I discover a report in which my neurologist states that that I have a mild neuropathy and he suggests a particular doctor from the Cleveland Clinic . I also have MS and Sjogren’s. But my icy cold burning pain is getting stronger lately and more widespread. It is a constant ache all day long. I wish my doctor had overtly told me to get checked out for the SFN. I don’t know if there is something else I could take for the pain. But if SFN is to blame, then perhaps there is something else that might work! Any thoughts or ideas would be greatly appreciated. I currently take Lyrica and Cymbalta for pain. Does anyone else have all-over skin ICY COLD constant burning? More recently, at night it changes to a HOT BURNING, then COLD again once the day begins! Crazy.

bobcardi63 | @bobcardi63 | Jan 15 3:12pm

In reply to @kle "Hi, I have heard ozone therapy, infrared light therapy and plasma exchange to be very helpful..." + (show)

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?

suetex | @suetex | Jan 16 6:26pm

I am currently just starting IVIg for my Sjogren's caused nueropathy. I have no pain (very grateful for that) or numbness, but loss of weight-bourne balance and muscle wasting. My atypical presentation delayed my diagnosis. I finally ran across a rheumatologist who looked for, and recognised Sjogren's. We should all be so lucky. (BTW: the numbers for my biopses were zero! Which means to me that my body is taking them out as fast as they are being made.)