Do you believe viral infections undiagnosed cause SFN?

I’m so sorry this is happening to you.

I have small fiber neuropathy as well, believed to be triggered by a viral infection because I had a horrible cold (underwhelming, I know, but I was really sick) two weeks before onset of symptoms. And that started a cascade of other issues and diagnoses, including an autoimmune arthritis.

Yes, small fiber neuropathy can affect heart rate. The small fiber nerves influence sensation, temperate, and pressure in sensory neuropathy. But small fiber nerves also run your autonomic processes: heart rate, digestion, breathing, etc. I have both small fiber sensory and autonomic neuropathy. So I don’t think it’s a matter of believing whether or not it can; it’s one iteration of small fiber neuropathy.

I don’t have links to research to back this up, but it’s my understanding viral infections are a known trigger for several neurological conditions, including small fiber neuropathy.

Just like with other autoimmune conditions, something acts as a trigger (we don’t always know what) that flips a switch in the immune system, whether it’s an environmental factor, chronic stress, covid, etc. It’s one reason for those of us who’ve long had chronic pain/illness/fatigue, that long covid exists and has similar consequences and treatments doesn’t feel surprising, at least it wasn’t for me and seemingly with others on my care team.

Are you seeing a neurologist in addition to the person you’re seeing for MCAS?

When my PN started full force in 2016, I was referred to Duke who did all the standard Mayo recommend tests. Everything was negative except for my EMG which showed severe axonal sensorimotor PN. The doctor’s diagnosis was that it was Idiopathic PN “possibly from a Guillain Barre variant or virus”. I was negative for Guillain Barre itself, so that statement from Duke leads me to think the medical field must think other viruses unable to be tested could trigger PN. That’s how I interpreted that, but I’m not a medical person and can’t be sure.

I don't have team of drs just get tests and no treatment. Cant find drs here treat neuroinflammatio in nyc area are booked until next year. Dr tested liver thats it -- she got ebv elevated antigen & fatty liver. Blame me for fatty liver. No further testing i read many diseases associated w ebv. I feel really sick, plus to know that i could have other diseases undetected that could be life threatening likr cancer and not able to find dr for further testing. My primary care refer me to drs not available until next year!! no appointments someone pls help

This is horrible. I am going to rant a moment. Why isn't there sufficient funding for research of these viruses and possible treatments. We spend half of our domestic budget now on military and Department of Defense spending. Ours is now equal to next ten countries combined including Russia and China. Both parties support it.
I don't know what to tell you. I believe as you do that these illnesses may be virus related and vulnerable immune systems inherited. I write constantly to senators and congresspeople about medical system and need for non-profit. This country's priorities are terrible.

I wonder if this is similar mechanism to SFN associated Covid 19 viral infection or covid 19 vaccine. I've been experiencing neuropathy and other symptoms since I got the mRNA covid vaccine over two and a half years ago. My symptom has gotten worse and none of the specialists I've seen so far can figure out the underlying cause. My skin biopsy did show low nerve counts so there are evidence of SFN. I'm tired of chasing after doctors for help and finding new doctors to figure out what's happening to me and give me effective treatments. It does take a long time to see any doctors for help. I am still suffering from this every day and the sore, tingling, numbness of my body are getting worse each day and I cannot do much due to pain and exhaustion. I just hope it's getting better.

I actually had SFN after at minimum 2 covid infections , then sfn started. Tested w skin biopsy. After the Moderna vaccine last Jan 2022 my nerve pain has accelerated now in my arms and hands and forearm is swollen. This pain is difficult for drs to understand, or identify solutions for pain .

I’m seeing a Dr & NP telemed clinic out of NY. They are very hands on & seem to have a successful protocol. If u want their info, PM me…I got an appt with them the same week

Hi yes please im so tired of going to dr to dr. I just want to go back to work and live my life. I dont know how to pm you.

I am convinced that mine is due to having Covid in late 2021. My doctors believe it too. Has anyone had experience with their neuropathy getting better as they get a few years out from there Covid infection?

YES I am 100% sure my SFN started after covid infections. But it started at the same time as cluster of symptoms within same month. I use lidocaine cream and flexerill helps little and thc gummies. I dont know how to get rid of SFN. A very smart allergist told me recently that SFN/MCAS/HATS working together and now EBV high antigen progressing and affecting my autonomic nervous system. But, when i try to explain to other drs they dont understand and think im crazy. Antivirals help lower SFN pain, but they are not the right antiviral i have tried famcyclovir helps some. I haven't been able to try paxlovid because i cannot test positive for covid active infections, just strong antibodies in 2021 prior to vaccination in jan 2022. I am loosing my mind with this pain and drs dont know what painful experience this has been for past 3 years with unrelented sfn pain. The allergist i saw didnt put anything about neurology aspect of our consultation in my summary notes and now im stuck with this. Im sorry I dont have any specific treatment recommendations to share and continue seeing dr after dr trying to explain and nobody understands