r/smallfiberneuropathy

Hi everyone,

I’ve been dealing with persistent symptoms for over a year and still don’t have a clear diagnosis. I’d really appreciate any thoughts or similar experiences, I am done talking to doctors.

My main symptoms:

•	Severe fatigue (not recovering even after sleep, fluctuates, mostly worse after exertion, but didn’t found a REAL trigger)
•	Dry mouth and dry eyes (mouth not constantly severe, just after speaking and eating worse)
•	Cold hands and feet (even in warm environments)
•	Reduced pain sensitivity
•	General feeling of dysregulation, almost stopped sweating 

Findings so far:

•	Skin biopsy: borderline reduced intraepidermal nerve fiber density → clinically interpreted as possible small fiber neuropathy (SFN)
•	Lip biopsy: inconclusive, slightly under FS of 1 
•	Blood work: completely normal (including immunological panel), except slightly elevated IgG4
•	Early Sjögren’s panel: negative
•	No clear autoimmune markers

Doctors said also that my eyes don’t seem to be inflamed. OSS is without findings, Schirmer Test 0/5mm though.

Neurological findings:

•	Skin biopsy: confirmed small fiber neuropathy (borderline intraepidermal nerve fiber density)

•	Sensory testing: asymmetric sensory neuropathy affecting both small and large fibers

•	Sudomotor testing:
•	Regional autonomic dysfunction (not uniform)

•	Areas of reduced sweating + areas of compensatory overactivity

•	Pattern suggests neurogenic dysregulation, not simple gland failure

• Tilt table test:

No strong subjective symptoms, BUT objective findings: • Delayed orthostatic hypotension (significant BP drop) • Reduced heart rate variability • Impaired baroreflex sensitivity • Paradoxical norepinephrine response (higher lying than standing)

Overall consistent with sympathetic autonomic dysfunction

Rheumatology: • Multiple specialists consider a classical autoimmune disease (especially Sjögren’s) unlikely • They are also emphasized being very cautious with overinterpreting histological findings

Other observations: • I basically never get sick anymore (no colds, flu, sore throat for a long time) • Symptoms fluctuate but overall trend feels worse over the years • Dryness sometimes improves when eating/drinking/talking

My questions:

•	Has anyone had similar symptoms with normal labs but borderline SFN?
•	Can dysautonomia cause dry mouth/eyes and cold extremities like this?
•	Does this sound more like Long COVID / ME/CFS than autoimmune disease?
•	Any suggestions for further testing or treatment approaches?

Thanks a lot for any input 🙏

When I shower and right after my symptoms are close to zero. But quickly come back. This only happens if I use a speicifc shampoo to wash my skin with, anything else like regular soap doesn’t cut it. Wondering if people have had similar experiences?

Hi Everyone!

I am 26 (F) and recently got diagnosed with SFN from a skin biopsy. I wanted to share my symptoms so maybe others could relate if they’re wondering about their symptoms and finding a possible diagnosis.

(Had hot/red feet and swelling randomly since I was a child along with discoloration of legs and swelling feeling after a shower)

My symptoms started in 2022 and have progressed until now in this order:

Severe bloating and distention

Severe Constipation

Acid Reflux

Hiatal Hernia

Bilateral Thumb Pain / Trigger Finger

Bilateral TMJ

Recurrent UTI’s

Hypertonic Pelvic Floor Dysfunction (worst symptom currently)

Chest Pain / Tightness

I hope this helps someone! And if anyone else has anything to share that may help me, feel free! 😊

Due to recent onset of Sjorens and SNF I was literally housebound for 8 months. I’ve described my experience in other posts here, but with the intro of Gabapentin, Naloxone and more supplements than I can count I’m actually out and about again. Travelled to see my 93 yo Dad for first time in 16 months. But nights are still a pain infested horror show.

I’ve had this high-end Temperpedic for about a decade. Maybe it’s broken in to all the wrong nerve pressure points, but I lay down and it takes about ten minutes and every nerve fiber is screaming. It’s truly unbearable.

I’ve done tons of research and most recommend Temperpedic. Anyone here found relief with a mattress? At this point I don’t care what I spend. Now that I can go out walking, seeing family, friends, be nice to not have this secret nightly life of horror. Thanks in advance for recs.

History:

I’m 32F

My mom was diagnosed 2 years ago (she was 58)

I’m cold a lot

My toes get cold and numb and turn white once in awhile. Tingly when they “come back to life” Almost exclusively in the morning or sometimes afternoon. Never at night

Sometimes my fingers get cold in the same way but that makes more sense to me when it happens because it is when I’m actually cold

I’ve been alternating between being constipated and diarrhea for about 2-3 weeks (I eat a ton of fruits and vegetables)

I’ve been vegan for 13 years and my vitamin levels have been good for my last several blood tests

Im in really good shape and active and have built a lot of muscle in the last 6 months

Im feeling very anxious because I know how tough this has been for my mom and I really do not want to have the same thing.

I know that everyone’s symptoms can be different, but just wondering if based on your experience and your research, if there were some distinctions in the way your symptoms started and progressed based on the cause. Any insight would be helpful as I’m still trying to determine my cause after almost 3 years of symptoms. If you know your cause (or have an idea of what might have caused yours), would you mind detailing your symptom onset and progression (if any)?

My biopsy for SFN came back negative, the neurologist diagnosed:

Syndrome of small fibre mediated pain and autonomic dysfunction

And

small fibre nerve dysfunction with peripheral neuropathic pain

Has anyone else experienced this? What does it mean

- I have PoTS, MCAs, HSD (& ASD)

- my sweat tests showed clean non length dependent sweating issues

- I have also been diagnosed with a ‘Ross syndrome’. (I have Horner’s and irregular sweat patterns)

Sixteen years ago, I contracted HSV-2 after an unprotected sexual encounter. Since that infection, I've been experiencing a symptom I had never had before: intermittent neuralgia in my lower limbs.

The pain affects my thighs, calves, and ankles. It's sharp and intense, localized to specific spots, and the skin in those areas becomes so hypersensitive that even a light touch is painful. Each episode lasts anywhere from 2 to 10 days, and it recurs roughly once a month. It has been causing me significant suffering for years.

I strongly suspect these attacks are related to the HSV-2 infection — possibly some form of post-herpetic or viral neuralgia — though I'd like to hear from others before drawing conclusions.

Has anyone else developed similar symptoms after being infected with HSV-2? I'd really appreciate hearing about your experiences, how you've managed it, and whether any treatments have helped.

Thank you.