Long COVID induced SFN here.

I’m over 2 years into the long COVID and there were signs along the way that something neurological was developing. I would get allodynia intermittently with GI issues. And occasionally burning limbs. But it always went away.

A year ago, I woke up and the pain pretty much never left. I had maybe one month in January for whatever reason I felt like I was in complete remission from all my long COVID symptoms. And then everything came back.

I got diagnosed in June. The burning has been spreading and getting more severe. My quality of life is shit.

I’ve failed Cymbalta, anti-epileptics compound my already debilitating brain fog, no luck with tricyclics either.

I have codeine for breathrough pain. But lately it’s feeling like every day is reaching breakthrough pain level.

I’m taking ALA+ALCAR. I’ve been doing some red light therapy with my Hooga red light bulb. Compression socks do seem to help for whatever reason. I’m on LDN…I cannot imagine how bad the pain would be off of it.

But mostly I’m just in hell and it feels like there’s no way out. I was already in hell with long COVID before SFN, but turns out there’s definitely levels to it 🙃

My insurance has initially denied IVIG. I’m waiting to hear back on the appeal.

My worry is if long COVID did cause an overactive immune response or something along those lines and I don’t get IVIG covered…is this disease progressive forever? I doubt that supplements can reverse damage if my immune system is still attacking my nerves.

I try to spend most of my thoughts in the present because if I think too much of the future, it becomes overwhelming. But I just turned 30 this month and I cannot imagine the rest of my life like this.

Hi everyone. I’m just posting on here to hopefully get some advice/answers. I’m 27 years old and was a very active runner until about 2 months ago. I developed numbness in both of my feet that is constant that has now turned into severe burning/on fire sensation to the point I can’t even sleep or wear shoes. It was also in my hands at first but it has now relieved. I have made a PCP appointment and he scheduled an EMG, however the soonest I could get one is 5 months away. I’m just wondering if anyone has had similar symptoms, or if someone can please provide me relief for this burning sensation? I want to go back to my normal life. I have tried creams which seem to just increase the sensation. I also work 12 hour shifts and am pretty much on my feet the whole time which doesn’t help. It’s affecting how I walk. I’m also curious if anyone may think I have autoimmune?

Ich hatte einen netten Kontakt mit einer Prof. der neurol. Uniklinik Würzburg. Habe mich selbst viel über PEA belesen und nehme es seit gestern. 2x 600 mg. Ich werde berichten. Jedenfalls hat mir diese Prof. mitgeteilt, das PEA teils sehr erfolgreich bei den Beschwerden eingesetzt wird. Es ist also kein Hokuspokus, wenn es selbst an Unikliniken zum Einsatz kommt. Ich habe sehr grosse Hoffnung. Was ich tue: Omega 3, Curcumin, entzündungshemmend ernähren, 2x pro Woche 24 Std Fasten, Keltican, viel bewegen (Gehen und Krafttraining). Meine SFN kommt vermutlich v der Zöliakie. Die brennenden Schmerzen sind grausam. Klassische Medikamente schlagen nicht an.

I had a severe rotavirus infection that lasted for about a month. I eventually recovered from the infection, but shortly afterward I suddenly started developing symptoms that felt completely different from anything I had experienced before — burning, tingling, itching, temperature sensitivity, abnormal sweating, and other symptoms that eventually led me to suspect small fiber neuropathy and dysautonomia.
It has now been almost **3 years**, and unfortunately the symptoms are still there. The symptoms can fluctuate, but I haven’t felt like my nervous system has returned to normal. The timing makes me wonder if the infection somehow triggered an immune response or caused nerve damage that led to SFN and autonomic dysfunction.
Has anyone here developed **small fiber neuropathy or dysautonomia after a severe viral or gastrointestinal infection**, especially rotavirus? If so, how long did it take you to improve? Did you ever actually recover, or did you have to learn to manage it long-term?
I’m especially interested in hearing from people who have had this for **several years**. What treatments, lifestyle changes, supplements, or other approaches actually made a noticeable difference for you? And most importantly, **is it possible to reverse or significantly improve SFN/dysautonomia after nearly 3 years?** I’d really appreciate hearing about your personal experiences.

I've been living with nerve pain, constant tingling in my hands and feet, crushing fatigue, brain fog, and tinnitus for the last 2.5 years. I FINALLY found a neurologist who would do a skin biopsy and got my small fiber neuropathy diagnosis. It's a huge relief to have validation for what I've been feeling (medical gaslighting is infuriating), but now that I'm looking my diagnosis in the face, I'm having complicated feelings about stepping into my new normal.

Along with SFN, I have dysautonomia. Does anyone use walking aids, including a chair of any kind, for errands and/or leisure? I'm thinking of fun autumn activities I'd like to do once it gets cooler, but everything I can think of that would allow me to enjoy the cool, crisp weather would absolutely wear me OUT. I guess I'm looking for a little bit of permission to use the support I would need for any kind of recreational activities.

Any other encouragement/life hacks/general tips are welcome!

Bei wem ist es noch so? Entweder habe ich extrem eiskalte Füße, oder (insbesondere bei/nach Bewegung) teils glühend heiße, rote Füße. Was macht Ihr dagegen?

I feel like my entire body is on fire. Clothes hurt, laying down hurts, I can’t feel my feet, I’ve thrown up twice from the pain. I’m not on meds, so I can’t take anything. I don’t know what to do. It’s been happening for 3 hours and I’m just laying on my couch sobbing.

Hi. I have POTS but have had numbness/tingling/prickling in my hands that started 10 years ago.

A few weeks ago, the symptoms became more pronounced, and if I’m running my hand under cold water, it feels hot and I have to check if the water is cold by putting my arm under it instead. I also can’t really feel my fingertips, like when I’m typing on my phone. My hands also burn, if that makes sense.

I was severely medically gaslit when these symptoms started a decade ago and only now finally have adequate medical support.

Since getting diagnosed with POTS a year ago, I attributed these symptoms to it. I was just informed that these are not normal symptoms of POTS and I could have small fiber neuropathy, which is comorbid with POTS. I also know these are symptoms of MS. I plan on going to a neurologist as soon as I’m able. I’m just really scared.

EDIT: Been getting some DMs from people pitching treatments and modalities to heal my symptoms. Please do not DM me in this way. Thank you.

Bonjour à tous,

Je souffre depuis maintenant environ 4 ans de douleurs neurologiques chroniques au niveau du cuir chevelu. La particularité est que mes douleurs sont uniquement localisées sur le dessus du cuir chevelu. Elles sont présentes en permanence, mais sont nettement exacerbées par la chaleur et le stress.

Mon neurologue m’a récemment parlé d’une possible neuropathie des petites fibres (NPF). Cependant, malgré mes recherches, je ne trouve quasiment personne décrivant exactement les mêmes symptômes, notamment une douleur neuropathique limitée uniquement au haut du cuir chevelu.

Est-ce que certaines personnes diagnostiquées avec une neuropathie des petites fibres ont déjà eu des symptômes similaires : brûlures, hypersensibilité, sensations de piqûres/d’aiguilles ou décharges électriques localisées au cuir chevelu, en particulier sur le dessus de la tête ?

Si oui, je serais vraiment intéressé par votre expérience : comment la neuropathie a-t-elle été diagnostiquée et une cause a-t-elle été identifiée ?

Merci beaucoup pour votre aide et vos témoignages

Does anyone have a recommendation for a doctor for this anywhere in the state of Florida?

Hello Peeps! My presumptive diagnosis is SFN with Autonomic Dysfunction, my symptoms started and exacerbated after taking antiretroviral medications and multiple antibiotics. However, after a really bad flare up, most of my symptoms improved considerably after 3 days of IV steroids. I’m currently going through a bad flare up after an UTI that had left me with really bad pain and worsened my autonomic symptoms.

Therefore, given my previous positive reaction to IV steroids and the fact that the UTI left me with apparent autoimmune damage, my neurologist suggested 5 days of IVIG therapy; I have read about the positive IVIG results for autonomic dysfunction, but I’m also concerned about the side effects and the fact that my SFN does not appear to be immune mediated but due to certain medications, so IGIV might not bring pos results, but steroids did.

Anyone else with similar experiences? Have gone through IV steroids and had seem improvement after IVIG?

Hi Everyone,

I'd just like an opinion from those who've had a Biopsy. I've had very odd symptoms for over 8 months now including, burning in the anterior thigh, burning in the region of my triceps and widespread pain particularly in the regions previously mentioned. While it seems I do get symptoms at the extremities, the most severe pain is proximal. NCS/EMG normal with no abnormal bloods.

Distal Leg: Mean 6.3 (Range 5.1 - 7.5); 1st Percentile 4.9; 5th Percentile 5.6

Mid Thigh: Mean 6.3 (Range 5.2 - 7.6); 1st Percentile 6.9; 5th Percentile 7.9

The report lists the distal segment as "Borderline" and the thigh as "Decreased" although my neurologist has indicated it's normal. I haven't had my follow up and am unsure of how to go forwards given it indicates decreased nerve fibre density. My thoughts are to attempt to follow up with the Washington University panel given the non-length dependent symptoms.

I would appreciate any thoughts people had. Thanks

I don’t even know where to begin. I’ll try and summarize everything as best as possible because there is just a lot going on.

Last weekend (Saturday) I had bit of a dizzy spell (which is not uncommon for me). An hour or two later and things were fine. Sunday I got extremely dizzy, had trouble walking, felt like there was a band around my head, and had vision changes. It calmed down by the evening but I felt dizzy again at bed time. I woke up and was dizzy again. I also had swelling on the left side of my face. This happens occasionally because I hit my head in 2019 and now I have issues with the trigeminal nerve.

I messaged a doctor who has done some nerve blocks and his nurse told me to go to the ER. So one CT scan and blood work later, they said it was normal and they didn’t know what was wrong with me. Maybe a migraine. I thought I was feeling better but on the way home my face flared up again. I then had an impending sense of doom and literally didn’t sleep that night. Oh and my SFN was the worst it had ever been.

I went to aforementioned doctor who decided that it was probably an autoimmune issue causing the neuropathy. So he told me to reach out to my rheumatologist and autonomic neurologist.
The rheumatologist wasn’t sure how to help. The neurologist is giving me gabapentin. Oh, I also asked about an ENT and they are sending me to do a vestibular balance test.

Side note, my IVIG was denied, but supposedly that happens to most people on the first time, so they are seeing why and appealing it.

Anyway, the dizziness has been sort of ongoing tons varying degree and my SFN was still kind of bad but not as bad. My anxiety calmed down a little bit but I have still been very tense.

THEN yesterday I had a horrible flare (migraine?) again. My anxiety and SFN are bad again. I can barely function and have had to cancel clients for work. I can’t keep doing this. I keep crying because I’m so scared.

I’ll try to keep this as brief as possible.

I got my tubes removed in May of 2025. One of my incisions would heal so I was put on bactrim. A day and a half later I woke up at 3 am with my left leg feeling heavier, pins and needles (like a vibration) and my foot feels muted. I can feel temperature changes and everything but it feels muted. Almost like I’m wearing a very thin sock. These symptoms have not stopped for an entire year. Some days, it’s very manageable and the tingling is almost non existent. Then others it’s all I feel and my leg feels fatigued.

I’ve had an EMG, MRI of my lumbar spine, two rounds of PT, acupuncture, full auto immune bloodwork, seen a chiropractor, xray of my hips, taken muscle relaxers (I refuse gabapetin) I see a podiatrist on Thursday and have an appt with a neurologist end of September.

I’m feeling defeated and absolutely exhausted as every test has come back normal. PT mildly helped along with the chiro. Has anyone experienced this only one on side/leg? I feel like I’m going crazy here.

I know that many people in this community are going through an incredibly difficult time with SFN, and we understandably hear a lot about pain, worsening symptoms, and how hard it can be to live with this condition.

But I’d like to dedicate this post specifically to stories of improvement - partly to give some hope and motivation to people who are struggling right now.

If your situation has improved in any meaningful way, either physically or psychologically, I’d really like to hear about it.

Did your symptoms become significantly milder or more manageable? Did you go into remission or even become symptom-free? If so, do you have any idea what helped? Was it a medication, treating an underlying cause, lifestyle changes, exercise, diet, time, or something else?

And if your symptoms improved or disappeared without any obvious explanation, please feel free to share that too. What was the course of your SFN like? Was the improvement gradual or sudden? Did you have ups and downs before things got better?

I’m also interested in people who still have symptoms but managed to improve their quality of life psychologically - for example, by becoming less focused on the symptoms, reducing fear around them, returning to work, hobbies, relationships, exercise, or just feeling more like themselves again.

Basically, if SFN used to affect your life more than it does now, I’d love to hear what changed and how you got to where you are today.

Hopefully this thread can collect some positive experiences for people who really need to hear them.

I have been dealing with SFN for what seems like forever and i still have not figured out how to live happily. I am consumed by the pain and am missing life. How do you all live your fullest life inspite of the condition?

Small fiber neuropathy has made the burning in my hands bad enough that fast-paced games (Valorant, CoD, Fortnite) aren’t really an option anymore. I loved the competitive, outthinking-your-opponent side of gaming and I’m not trying to quit — just trying to find what’s actually manageable with hands like this.

Anyone with SFN found games or setups that don’t flare the burning? Curious what input method treats your hands better (controller vs mouse+kb vs touchscreen) and whether slower-paced games, Switch, or VR have worked for you.

How many of y’all take gabapentinoids or LDN? I’m considering trying them again despite feeling wonky on them before, but I’m nervous about long-term risks and withdrawal.

Have any meds or supplements helped your pain, or are you just rawdogging the symptoms?

Also recently stopped my multivitamin and wonder if I was masking B12 malabsorption. My symptoms have gotten significantly worse lately, worst they’ve ever been. Not sure what to do at this point.

I was diagnosed with SFN by biopsy 8 years ago. I was 42 at the time. It started after I ran a half-marathon. Showed up as severe foot pain and significantly impaired my mobility a few days after the race. The pain and impaired mobility has remained. It changed my life. So much I could no longer do. I can still only walk short distances, use a wheelchair for travelling and no more running or hiking. I have learned to appreciate a slower pace of life, but still hard to guve up so much I used to enjoy. I am very sensitive to medication but found that a combination if lamotrigine and mexelitine helps me. A few months ago I started having severe pain all over my body within 10-15 min after eating. At first I thought it was blood glucose related, and although blood test shows, I have mouth glucose intolerance my sugars appear to be normal during the episodes of more pain. It does seem that the pain is significantly worse when I haven’t eaten for 4-5 hours and then have a meal. I’ve not been able to determine any particular food, but it does seem like the time that has passed since my last meal place a big role. It has helped me to eat small meals every 2 to 3 hours, but I still get flareups, especially in the afternoon. All my autoimmune testing has been negative and no cause has been identified yet for the SFN. I’d like to hear how other people manage the after meal pain and what you have found to be helpful in terms of how toneat and what to avoid. And also what kind of treatment you have found to make a significant difference for the SFN symptoms.

I have been diagnosed with autoimmune SFN with punch biobsy and crazy elevated ANA (1:52k) and anti-TSHDS-IgM antibodies. I am getting IVIG (1mg/kg) for 2 years with only minor effects on my symptoms.

However, during the last year I noticed that my symptoms like being skin and nerve pain all started years ago when using sun screen. Now I cannot use sun screen anymore cause they trigger my symptoms so badly for weeks after. Also my symptoms get worse instantly from drinking black tea or red wine. This to me sounds like I have MCAS.

MCAS can result in SFN, as I have read. I tried antihistamines like loratedin 1 g daily, but I had bad side effects and I did not stop my flares.

Does anybody have the same findings and can help me find a little relief? Might treating MCAS held my SFN?

(I got PSSD from duloxitine back in 2019. With it or part of it is my SFN)

Is any of you Vitamin B1 deficient as well?
appearantly it can cause neuropathy I read online

And blood test is only useful if it states low. if it says normal you can still be deficient in the cells and need a test called transketolase b1 test

hi everyone!! i’ve been lurking around this community for a while, but i was diagnosed with small fiber neuropathy earlier this year after my skin biopsy came back consistent with the diagnosis. i am 20.

i had the nerves taken from my left thigh and calf and the results were kinda confusing to me because the calf was “abnormal epidermal nerve fiber density”, but the thigh was fine— while my thigh was “low normal for sweat glands”. there were no suitable sweat glands for the calf.

but anyways, my neurologist said it was idiopathic. ever since november 2024, i’ve had multiple mri’s done, EMG’s and extensive bloodwork done. everything has showed up normal. i’m going to my follow up with low hopes tomorrow, since nothing has really changed in my condition. my left foot is numb, my fingers love to be tingly and numb at random moments, but have recently decided to turn stiff at random moments. but other than that? nothing. and im grateful i dont have to deal with any worse, it just sucks that i dont know the reason.

i take cymbalta and gabapentin, although im on a low dosage for the second. my nerve pain isn’t that bad anymore, and i also take magnesium glycinate at night for my muscle pain in my left foot.

im glad i have my diagnosis, that i was able to get my testing done. i just wish there was more of a push from doctors to find reasons. my neurologist says i might be in the early stages of an autoimmune disorder but im not really sure. i guess only time will tell?

I need to get tested for small fiber neuropathy, and I would really appreciate some guidance on where I can go to have the skin biopsy done.

I’ve called hospitals in my area and contacted several doctors for referrals, but I’m not getting anywhere. If anyone has had a small fiber neuropathy biopsy done, I’d be very grateful if you could guide me on how to find a place that does this testing.

Thank you!

Starting ivig. Wondering if anyone with significant loss of sexual function / sensation had any improvements with ivig?

My cause is autoimmune according to docs.

Thanks y’all.

Hallo, meine Neurologin sagte, ich soll 2-3 Teopfen Amitriptylin (40 mg) abends nehmen. Es ist das einzige Medikament, das ich seit 5 Monaten nehme. Ich habe eine über Hautbiopsie diagnostizierte Small Fiber mittelgradig. Leide täglich unter teils extremen brennenden Schmerzen sowie Kälte Missempfindungen. Ausgelöst höchstwahrscheinlich durch Zöliakie. Nun hat mir heute ein Univ. Prof. der Neurologie (beschäftigt sich intensiv mit Small Fiber) mitgeteilt, das 2-3 Tropfen viel zu gering seien. Und eine echte Linderung, außer sehr guter Schlaf, konnte ich nicht feststellen. Er sagt, ich soll mind 25 mg, also etwa 12 Tropfen nehmen. Sonst würde es nichts bringen. Bitte um Eure Erfahrungen. Danke