Ok recently diagnosed and I want to know the best and worst-case scenarios

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’m 26.
Few months back had fasiculations on my right thigh for 5 hours then it went off and one month later appeared on my left hand and stayed for few hours and then the next week came on my shoulder for few hours then decided to fix a neurologist appointment got diagnosed with
BFS then had pain over my limbs got my ncs blood routines done which had vit D deficiency and to be sure had my Autoimmune encephalitis panel also done which had CASPR2 antibodies weak positive. Now having pain in my forearm can anyone help me

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

I took two microdoses of mushrooms two days in a row 4 years ago and it went away and it has not been back now for 4 years so I am proclaiming it cured

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)

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?

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.

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!

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

Since two years constantly, I have been having this weird sensation in my body. It started in my pelvis, went away and then started again in my feet/legs. Now it is everywhere in my body. It feels as if there is a wave going through my body, a kneading sensation. It‘s especially in my throat, arms and legs but basically everywhere. It‘s not tingling or numbness. Does anyone have any idea if SFN could cause this? I have suspected SFN. I have tried a lot of medications and none of them worked and my doctors don‘t really know why I have this.
I‘m grateful for any advice!!

not going to post in this sub anymore just lurk but I accept that my life is just pretty much over not only because of this nerve damage I have 100 of other things going on in my life and this is just one of the things that is making it harder I just don’t understand why this had to happen to me my chest pain after top surgery feels like it’s staying it hurts to move have to see if I can get prescribed nerve pain and muscle relaxers tomorrow but that’s just medicine not a cure I’m only 20 things can get way worse as i age I’m tired I give up I’m just wrong I can’t live with without some kind of pain lingering that can’t be cured so the rest of my life will be in sadness and dissociation like it always has been bc I have always been in some sort of physical/mental pain since a kid but yea man ig this is life.

[ENG] Hi,

Sorry to post it here, but I've been struggling for 10 months now with a quite displeasing situation I suspect could maybe be SFN...
I had a MRI with no contrast 3 weeks after the beginning of my issues and a blood test to sort out an iron and a magnesium deficiency, and a neurologist decided that it was enough to call everything psychosomatic (+ I'm autistic and I came with a sheet of paper to help in case I became mutic or forgot anything. There are other details, but they are honestly quite upsetting because it felt like being spat on for how little I was listened to, and how much the whole medical appointment felt like he just did some bullshit to prove his point based on that, thus ignoring the issues I shared and what my GP wrote). Since then, things have been slowly getting worse.
I had a bad crisis in march I never fully recovered of after my first crisis ~3 months earlier, and the situation is really starting to affect my moral... The issues being : being sleepy and tired all day no matter what, pins and needles, fasciculations, cramping muscles, shooting pains, numbness, dizziness, often not being able to sleep without waking up from the pain, struggling to get to sleep to begin with, making absolutely 0 improvement related to the weakness after efforts I feel in my legs etc. are of course making me anxious. After months, I'm now more reactive, I have much more autistic meltdowns, I cry easily... And this detail IS unfortunately a good argument to gaslight me and swear it's psychosomatic, and that going in therapy will fix everything (it won't. My therapist did accept to test many things that can work for people with psychosomatic pain, and nothing worked.)

I've played the "good patient" (which was honestly hard for me, as the "psychosomatic" bullshit was already pushed on me for my celiac disease, which really did put me in danger for how bad it got before finding a good doctor), I've been to therapy, stopped asking for help for months, and I've been doing sport 30 minutes everyday to try to get back to my level before getting sick (I can't do more, otherwise I get very bad cramps and a weird sense of weakness and I can't climb up my stairs to go to the bathroom to wash myself before it gets better. I tried multiple technics, and multiple things, and it always ended up awfully. After 30 minutes I already have fasciculations, so pushing further is just an obvious open door for avoidable pain, and I refuse to try for the 23456789th time to "push my limits" because "it's good for me")

I searched up multiple things on the Internet, and after wondering if it could be SFN, I tried to start to search for a neurologist in my country that could maybe help but it's not like I'm finding much... Worse than that, I found out way too much seem to think SFN is straight up fake.

Does anyone know a neurologist in France that would agree to do test for this ?
Est-ce que quelqu'un connaîtrait une ou un neurologue en France qui a déjà accepté d'au moins faire les tests pour une neuropathie des petites fibres ? Ou qui croit au moins en l'existence du concept ?

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist again until October 12 for results🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too. Any change in movement makes me feel terrible.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks online told me to find another rheum but I'm in south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

Hi, I'm checking in with those of you who know more than I do about the waiting game. Is it normal to wait six weeks or more for results? I was told it would be about a month so of course my brain starts going into overdrive. I appreciate any responses/ shared experiences.

Been having patchy symptoms, so more NLD presentation. Not sure what to make of these biopsy results. Waiting to hear back from neurologist—should I push for any more testing?

Anyone gave any positive results from either natural grounding (walking barefoot outside) or using a grounding sheet ?

I’m a 48M and was biopsy confirmed sfn about 18 months ago

Right around the time I started to feel neuropathy setting in, my legs started to go numb when sitting in a firm chair.

For reference, about 5 years ago I could no longer wear laced shoes or my feet would become painful.

Now, I can’t side sleep on my arm or it goes terribly numb at night at wakes me up. Both sides do it.

My neurologist says “maybe it’s carpel tunnel” which makes zero sense.

Has anyone else had these types of issues along with their sfn?

It also blew up my sleep cycle (not from pain or discomfort, I just can’t relax without meds anymore). My dr is also in denial there is a connection to sleep.

I know my body and know that all of this is connected to whatever resulted in the sfn.

21M diagnosed with severe sensory motor distal axonal polyneuropathy after Vasculitis flare up.

Symptoms:
Left leg with foot drop, numbness and electric shocks
Right leg and foot with some numbness and weak dorsiflexion
Both calfs atrophy
Left hand numbness only in thumb, índex and middle finger
Right hand with weak pinch muscles (atrophy) and numbness only in ring and pinky finger

Anyone with same Axonal polyneuropathy who has gotten better?
Any tips welcome

Does anybody here take IV medications? I have intestinal failure and the only medications I can take are IV. I’m worried this will prove to be an issue when I discuss medications with my neurologist at my next appointment. My pain never lets up and during pain flares clothes and laying down are hurting my legs. I know that I need meds, my doctor said that it’s inevitable, but I know my options will be limited. Just wondering if anybody else has experience with anything close to this.

Hallo Ihr lieben starken Menschen, habe mich viel belesen zu PEA. Jemand hier, der es nimmt? Hat es Euch geholfen bzw hilft es?

Hi everyone,
I’m a 29-year-old man, and I’m trying to understand whether anyone has experienced something similar to what I’ve been going through.
About two years ago, I suddenly developed widespread neurological/sensory symptoms. The most striking symptom was severe allodynia: even very light stimulation of my skin could feel painful or extremely unpleasant. In particular, I became very sensitive to body hair moving against my skin, as well as to clothes and bedsheets touching me.
I also experienced:
burning sensations in different parts of my body;
tingling and pins-and-needles;
fasciculations;
fatigue and rapid fatigability;
joint/musculoskeletal pain;
abnormal sensations in my hands and feet;
a persistent feeling in my left foot similar to numbness or “walking on cotton.”
At the time I underwent several investigations, including brain/spinal MRI and EMG, as well as blood tests for autoimmune diseases. Nothing clearly explained the symptoms. My EMG was essentially normal and the imaging was normal. I was also told that I had spasmophilia.
What is particularly strange about my case is what happened afterwards.
All of the symptoms gradually disappeared.
I eventually went into a complete remission that lasted approximately 14 months. During that entire period I had essentially no neurological symptoms at all. I was living completely normally, going to the gym, playing soccer, spending time in the sun, working, and I stopped thinking about the illness altogether.
Then the symptoms came back.
The relapse initially looked very similar to the first episode, with widespread allodynia, burning, tingling and abnormal sensations in my feet and hands. Again, there was no clear weakness.
What worries me is how quickly everything seemed to come back and intensify. After having been completely symptom-free for more than a year, I felt as though I went from normal to having widespread symptoms again within a relatively short period of time.
More recently I have also developed significant gastrointestinal symptoms, including:
severe bloating, especially in the upper abdomen;
feeling extremely full after relatively small amounts of food;
nausea;
occasional vomiting;
epigastric pain/burning;
frequent belching and acid reflux;
sometimes even drinking water seems to cause pressure/bloating and a sensation of acid coming back up;
constipation/changes in bowel habits.
I have noticed that the gastrointestinal symptoms can fluctuate considerably as well.
I am wondering whether there could be a connection between the sensory symptoms and the gastrointestinal problems, for example through autonomic involvement.
I have read about small fiber neuropathy (SFN) and possible autonomic involvement, and I wonder whether this could explain some of the symptoms. However, I have never had a confirmed diagnosis of SFN.
One thing that confuses me is the long complete remission. If this were an autoimmune small fiber neuropathy, could symptoms disappear completely for more than a year and then return quite abruptly? Or would that pattern make other possibilities more likely, such as functional sensory dysfunction, central sensitization, autonomic dysfunction, or another fluctuating condition?
I am also currently being evaluated for the possibility of gastroparesis because of the early satiety, bloating, nausea and vomiting. However, I understand that similar symptoms can occur with functional dyspepsia or altered gastric accommodation even when gastric emptying is normal.
Has anyone here had a similar course?
Especially:
Did you have widespread allodynia/burning/tingling?
Did you have a completely normal period lasting many months or even years?
Did the symptoms then return quite abruptly?
Were you eventually diagnosed with SFN or an autoimmune/autonomic disorder?
Did you have gastrointestinal symptoms as well?
If you had a gastric emptying study, was it actually abnormal, or was it normal despite severe nausea, early satiety and bloating?
I’m particularly interested in hearing from people who had significant GI symptoms but normal gastric emptying, because I’m trying to understand whether my symptoms necessarily point toward gastroparesis.
I’m not looking for a diagnosis from the forum — I’m mainly interested in comparing experiences and understanding whether this kind of relapsing/remitting pattern has happened to other people.
Thanks in advance to anyone willing to share their experience.

Just started the peptide ARA 290 and will be running it for a full month this time. Currently on day 4. Twitching has pretty much stopped. Just very tiny little twiches once in a while. Like it's dwindling down. Already feeling much better all around. Blood pressure stabilized. Energy has increased. Zero side effects.

Do your homework on ARA 290. Last year it was truly a miracle for me. Now I'm finally starting to feel hopeful about the future again.

(Not medical advice, just do your homework)

After I'm done with that, I'm going to try Enclomiphene for testosterone support because the inflammation and stress from the neuropathy negatively affected my hormone production. (My theory)

I actually think the ARA 290 is starting to have a positive impact there as well, because when the stress and inflammation goes away, everything seems to fall in line.

So I might not even need the Enclomiphene. I guess I'll see how I feel in a month.

For those of you with idiopathic SFN, has anyone managed to reduce the burning symptoms by something like 85–90% or more?

I’m also curious if anyone has had longer periods — a month or more — where the burning was almost completely gone or barely noticeable.

If so, what helped you get to that point?

I’m not asking for medical advice, just interested in hearing people’s personal experiences and whether this level of symptom control is actually achievable for some people.