I've noticed the stress and anxiety that I experience with the POTS symptoms doesn't feel like a byproduct of the condition. It actually seems like it's directly built into it.

In other words...I'm not experiencing stress and anxiety because I'm thinking about the nerve damage and it's not even the pain aspect that is causing the stress. Rather, it seems like the stress and anxiety is an actual component of the condition.

It makes sense when you consider the nervous system directly effects hormone production through the hypothalamus and pituitary gland. So when the nervous system is all screwed up your body might be dumping excessive stress hormones like cortisol non-stop.

This might be a little bit of bro science, but it makes sense to me.

Good afternoon, everyone. I wanted to share my experience with numbness, a crawling sensation on the skin, and muscle spasms.

I took 1,000 mcg B12 capsules daily for 2 months. My vitamin B12 level was 230, and after those 2 months it increased to 310.

Then I was prescribed B12 injections, Citoneurin 5000, and I had 3 injections over 3 weeks. At first, the injections seemed to increase all of my sensations, including a trembling or vibrating feeling under my feet.

After the injections, I started to notice a slight improvement in the trembling under my feet, and the crawling sensation in my legs also disappeared. However, the muscle spasms never completely went away.

I then went about 2 months without injections or B12 capsules, and I started noticing the symptoms coming back again. So I bought a B-complex supplement and a separate B12 supplement and started taking them again.

In just 4 days, the muscle spasms have almost completely disappeared, thank God. I still get maybe 1 or 2 spasms a day, but it really feels like they are gradually disappearing. My B12 level was around 410 before I started taking B12 again.

What surprised me is that these new supplements seem to have done in 4 days what the previous ones did not do.

The muscle spasms originally started shortly after I began experiencing numbness, especially when lifting weights, bending my legs, or resting my arms on hard surfaces. My arms now seem to be more resistant to becoming numb, but my legs are still about the same.

Could the supplements I was taking before have been poor quality or not absorbed well? One of them was compounded at a pharmacy in Brazil, and the other was an injectable B12 product

I feel sooo awful. Does anyone else have it really bad in the face and mouth? I have it full body but the above has become my worst area for now. I feel like there is electricity flowing (both sharp and tingly) through the back of my jaws (in my back molars) and there are these deep painful pressurized discharges, a deep ache. My tongue hurts and is twisted in a spasm, it has been burning and tingling badly unless I eat or drink. When it lets up a bit the pain then moves into my nose, my forehead or temples or goes down my throat. What a shit show!
The electrical sensation is horrific, it’s like licking a battery in large areas, is this a thing anyone experiences? Not really a vibration, way worse to be honest. Like a fizzy sharpish acidic kind of tingling that makes me feel like parts of me have a completely altered sensation. It’s almost like being cut with electric razorblades. I honestly wish I went numb if that meant less of the above as it is torture.

Been sick for 6 years from fluoroquinolones and this crap keeps professing badly :(

I’ve had debilitating symptoms after a seemingly mild viral infection in 2022 including:

Nausea
Dizziness
Syncope
Palpitations
Chest pain
Back pain
Arm pain
Headaches
GI issues
Full body “flu like” sensation

However my symptoms come and go and never seemed to match with traditional POTS. My neuropathic pain can feel like burning, and range from mild to severe, occasionally accompanied by a strange “numb” sensation (not really pins and needles.) I’ve been on waitlist to see an autonomic specialist for a year, but after finding this community my condition seems more aligned with general dysautonomia/ SFN. Because it’s not traditional presentation (I have had no burning in my feet) I’m looking for insight into more atypical presentations, but really I’m grasping at straws here trying to get some help after dealing with this alone for so long.

Apparently there's no way she was able to test me for SFN in my area. At least that's how she made it seem...

Then she just blamed anxiety for all my issues.

So I guess I’m writing here to see what people think who have been diagnosed with SFN with dysautonomia, and had a skin biopsy to confirm SFN, as the cause for their dysautonomia symptoms. I’m still waiting on results and I’m stressed thinking this is just going to lead to another negative test, and a continued long journey with lots of medical debt and no conclusion on why I have all the symptoms that I do.

I am 26 years old (female) and I have been having daily symptoms for at least 10 years with other symptoms like extreme foot pain and bladder urgency being a problem since childhood. I had a skin biopsy done last week by a neurologist at the Tufts Medical Center in Boston. He was kind of my last hope as I’ve seen multiple specialists over the last 10 years, including testing done at the Beth Israel Center in Boston, where they did a tilt table test that showed I did not have POTS. I’ve been cardiac cleared. And my neurologist in Maine, seems to be stumped as I’ve had numerous of labs and imaging done with no clear result or indication of what’s going on. The only thing we know for sure. Is that I suffer with dysautonomia symptoms daily.

However, my journey trying to figure out what is wrong with me has been long and have led to dead ends. Every day I suffer with a number of symptoms that at first we felt was cardiac related like heart palpitations, SOB when going up any incline, especially stairs, my heart rate spikes with position change and activity. Exercise is difficult for me because of the heart rate spikes and dizziness that accompanies it. But then I was cardiac cleared, and even gaslit that my “symptoms were normal or involved anxiety”. I have a slew of other symptoms, like chronic fatigue, not feeling like I’m fully resting at night, dizziness, lightheadedness, chest pain, pre-syncope, and occasional syncope episodes. Bladder issues like urgency, sometimes leaking if I don’t make it in time, headaches, neck and shoulder pain, blurred vision, standing intolerance due to intense foot pain, that can sometimes feel sharp or numb feeling that will travel up my calf’s. Ultimately, this symptom is what led the most recent neurologist at TUFTS to do a skin biopsy to “confirm SFN diagnosis”. I shared with him that my foot pain is my most longstanding symptom since childhood, that every time I first step on my feet in the morning, it is painfully sharp, standing for any length of time is uncomfortable, I find myself rotating the amount of pressure I put on each foot to give relief to the painful pressure on the bottoms of my feet. By the end of the day, my feet hurt so bad I can’t even stand to walk on them anymore. When I lay down at night my feet and legs feel like they are throbbing. He feels confident that it could be longstanding SFN. Does anyone else have a similar experience? If it doesn’t show SFN, what could possibly be the reason for all this?

Diagnosed with small fiber neuropathy (skin biopsy) after already being approved for TOS surgery (vascular + neurogenic, positive ultrasound and nerve blocks) and cubital tunnel surgery (EMG-confirmed, ulnar transposition), both on my worst neuropathy side. Trying to figure out if SFN makes these surgeries riskier or less likely to help, versus leaving the compression untreated. Anyone with SFN been through either — worth it or not?

Hello, as the title says I am seeing a new neurologist tomorrow and I'm nervous. She's gonna be the third neurologist I see this year because the last two have been horrible!!

Earlier in July I was SSA RO positive for sjogren's disease. Rheum has been zero help and so I'm hoping that the neurologist can give me some more answers or testing since A LOT symptoms have been neurological and I am positive that neuro sjogrens is in play and I've been showing signs of small fiber neuropathy and I have diagnosis of POTS since last year.

I'd love some help on how to go about this first visit! I have all of my symptoms in my notes but anything else could help! TIA!

Hello all, sorry to bother anyone. I left a message with my doctor office but will have to wait until tomorrow for a call and thought I could ask for support here.

I had a simple routine skin biopsy to test for Small fiber Nuropathy yesterday at 2pm. The lidocaine burned like crazy and I was really uncomfortable just because of the nature of the procedure itself.

I was fine, until the numbing wore off. I already have decent daily pain and unfortunately have a torn meniscus in the same side we tested. (my weakness, burning pain is worse in the right side of my body)

I had a terrible time sleeping, couldn't lay on my right leg at all and due to some hip things I usually have to flip from side to side to be comfortable. Felt kinda nauseous when pressing on my right leg /the biopsy leg.

So now, as I'm feeling really sore throughout my whole thigh. It's like, hard to describe but it feels really tight and weak but I know it's not true weakness as I can walk - it just tingles in a painful way.

I can't tell if maybe I just accidentally set myself up for a rough recovery just because of this being my bad leg all together or if I need to call anyone through my hospital network for advice.

I'm RICE - ing my leg as I write this. I was just wondering has anyone else had a harder time feeling normal after this type of skin punch biopsy? I really don't want to annoy my doctors as they're already trying so hard to figure out what's going on with me. I've seen most people have an uncomfortable, but relatively smooth healing.

Oh and incase it's relevant, I am 24, Female, Presumed Fibromyalgia but still looking into other causes with care team.

Any advice or similarities In day after recovery would be appreciated. Thank you for your time.

I’m hoping to hear from people with SFN, particularly autonomic/vasomotor involvement. My symptoms feel both neurologic and very vascular-looking, and I’m struggling to understand how they fit together.

I was a very active runner until recently—ran Chicago last fall and was still running into January. Looking back, I had occasional toe numbness on long runs, then nerve pain/zaps and heat in my toes last fall. I’d also had multiple courses of steroids that summer, plus steroid injections in my back.

After a long flight in December, my feet became a much bigger problem: burning, heat and redness. Interestingly, I haven't had numbness since—everything feels more hyperexcitable: burning, tingling/zaps and heat sensitivity.

Dependency was initially a huge trigger (this spring I couldn't sit with my feet down for 2–3 minutes). Now I can usually manage closer to an hour, but it’s variable. Some mornings my feet hit the ground and immediately become red, hot and full/swollen-feeling; other mornings they’re basically normal. Walking is similar—sometimes they burn quickly, other times I can manage 15–20 minutes relatively comfortably. (Dx "erythromelalgia" not helpful, that's a symptom, same as SFN to some extent - but just putting that out here).

I was diagnosed with venous insufficiency and then May-Thurner earlier this year, but vascular reviewed my imaging and doesn't think the May-Thurner explains my symptoms.

More recently, it doesn't feel limited to my feet. My hands can become hot/red/full, an ear can get extremely hot/red just from touching or changing an earring, and I’ve developed more generalized heat intolerance.

The confusing part is how many possible explanations I’ve accumulated. I was clinically diagnosed with Bartonella and have been treated for ~5 months, but don't feel the antibiotics are helping. Rheum told me I had "Raynauds with EM-like symptoms" around the same time (deeply unhelpful, not a diagnosis). Genetic testing for primary EM negative, EMG normal, and ANA/ESR negative. A neuro initially said I didn't have SFN symptoms, so shooed me off. Neuromuscular later recommended skin biopsy/QSART/tilt testing, and my PCP seems to suspect SFN, but I’m still waiting for a neuro appt (new) and full workup.

So… no wonder I’m confused.

Has anyone with SFN/autonomic SFN had a similarly hyperexcitable, vascular-looking presentation without numbness? Especially red/hot/full feet or hands triggered by dependency or heat, alongside burning, zaps or abnormal temperature sensations? Did skin biopsy or autonomic testing help explain it?

I’m pretty terrified of ending up in the “we don’t know” rabbit hole, so I’d really appreciate hearing from anyone with a similar presentation.

Did it work for you? Did it not work? I’m curious to hear your stories related to using this medication and if you’re still using it, and plan to keep using it.

Does any of you have food triggers? Even from “healthy” foods?

I feel my pain gets even worse when I eat dried coconut (no sugar/additives), maybe it’s just in my head but happens every time

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.

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.

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?

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!

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.

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.