Autoimmune illness and small fiber neuropathy

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?

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.

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.

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?

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.)

Hello Machak,
I need answers my self, I have S.F.N., Sjogren's, Hashimoto's and what ever else is going on? My legs burn and are so cold in the morning and evening, I can't take it anymore. I'll be going back to Columbia Presbyterian Hospital NYC. Neurologists NJ are really not equipped to care for me, told me "my case is too complicated" and they can't do anything for me!! So back to the City I go! Very hard to sit, in the car. I have sever nerve damage from hip surgery! If only I knew that would happen!!! QUESTION EVERYTHING before choosing any medical procedures. Research!!!!!! I found on Mayo Clinic after the surgery, Hip surgery and Small Fiber Neuropathy good information, Read before hip surgery!! A must ! I Hardly leave my home anymore. The Hip Surgery caused knee pain because of the way I walk now, Had a failed Laminectomy 2008, put it all together, Domino Effect. Looking foreword to getting My IVIG Infusions again! It does help!

@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?

@criscros21
I have idiopathic SFN and take alpha Lipoic acid (600 mg) and Acetyl l carnitine-300 mg) supplements that seem to help some of the SFN symptoms. I had severe burning, pins and needles, prickling pain that started in my feet and has traveled upwards. I still get some of this but much less and now more numbness/weakness.

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.

I was diagnosed with small fiber peripheral neuropathy in 2019. It apparently is from a undetermined autoimmune disease. I was also diagnosed with chronic Lyme disease (not at Mayo) which is more than likely the cause of my neuropathy. Over the past year my symptoms have gotten worse. Pins and needles pain in my feet (hard to wear shoes) and whole body burning. It’s
becoming difficult to do much of anything. Have any of you had Lyme disease that caused your neuropathy?