Small fiber neuropathy (SFN) experiences

I went through something very similar where nothing seemed to work and nobody could figure out what was actually happening. It turns out my Vitamin D levels were incredibly low—down to an 8. Once I started addressing that deficiency, things finally began to improve. I still get occasional Milgamme injections, though that deficit left me with some chronic issues I'm still managing... I also have to stay on top of my immune system since my clarity isn't always there. But the worst part is over, at least regarding the paresthesia, dysesthesia, and all that.

My unusual immune-related neuropathy specialist told me I’d never get a clear answer here in the States. She actually suggested I travel to Belgrade for specific tests they can't do here, and she recommended seeing Dr. Apostolski. It just crossed my mind that I never actually went... Well, you could always Google him and try to find his contact info to see what people are saying.

It looks like the Mayo Clinic is making progress

It’s probably not Vitamin D—these symptoms feel more like a B12 deficiency or maybe way too much B6. I haven't checked my B6 levels yet, though. My D was sitting at 16, and even after taking 10,000 IU for a year, I haven't seen any real movement. I'm actually pretty curious to see where it lands in four weeks when I finally get bloodwork done. Honestly, the biggest improvement I've noticed is from using 20% CBD resin.
90% of people dealing with anxiety have a significant Vitamin D deficiency..

Serotonin isn't really the issue since SSRIs don't work for me—at least not personally. If you ask me, it’s got more to do with dopamine. The brain fog, the paresthesia... it all connects.

I also deal with this weird thing whenever I get tattooed. Every single time, the artist has to go over it twice with different needles; they tell me either I'm anemic or something else is missing in my system. It's like a 1 in 900 chance... you just end up skipping the tattoo altogether. It's almost like my skin is gradually rejecting the pigment.

There just isn't a magic fix. You basically have to accept the symptoms and push through, and things will eventually get better. For me, CBD, a little tyrosine, and some Solgar multivitamins help me keep it together..

boldstag58 said:Harold Reed4
Let me know if you're still hanging around. I actually heard about this one super simple test—supposedly it's a foolproof way to figure out if you're dealing with Small fiber Neuropathy or not.

Which one is it? Honestly, by the time I walk into the clinic, they're practically rolling out the red carpet for me—so why waste more cash on just one more little test...

Jacob Lopez51 said:It’s not Vitamin D. These symptoms feel more like a B12 deficiency or maybe too much B6. I haven't checked my B6 levels yet. My D was at 16, and I've been taking 10,000 IU for a year now without any real improvement. I'm curious to see where it stands after four weeks when I finally get bloodwork done. The biggest relief has come from 20% CBD resin.
90% of people dealing with anxiety have a significant Vitamin D deficiency...

It doesn't seem related to serotonin since SSRIs don't work for me. I'd say it's more tied to dopamine. The BFS, the paresthesia...

I also have this weird thing happen whenever I get tattooed. Every single time, the artist has to go over it twice with different needles. They tell me either I'm anemic or something else is missing. It's a one-in-nine-hundred chance... you just skip getting tattoos altogether. It's like my skin gradually rejects the pigment.

There aren't any easy fixes. You just have to accept the symptoms and push through. For me, CBD, a little tyrosine, and Solgar multivitamins help enough to keep me going...

A level of 16 isn't good; the lower limit should be closer to 75. An endocrinologist should look into this—check your vitamin levels and hormones, like PTH, which is linked to Vitamin D. Serious deficiencies should be managed by a specialist following a specific protocol. I wouldn't take multivitamins blindly; you don't want to cause more harm. It's better to find out exactly what you're lacking and target it based on a doctor's advice. Too much of certain things can be an issue, and some shouldn't be taken long-term...

They checked my PTH and total calcium levels at the exact same time, and everything came back perfect—so nobody could make heads or tails of it. Just one big mystery.
All my other vitamins and minerals were fine; I actually double-checked them. The first time I paid about eighty bucks at the lab. The only thing I missed was checking my B6...
I went ahead and ran the ANA, RF, and anti-CCP tests myself, and they were all negative—though apparently, a massive Vitamin D deficiency can mess with autoimmune markers.

What else should I get tested for? I’m heading back to the clinic in New York soon for a full systemic workup, so I’ll be doing thyroid antibodies, cortisol, testosterone, immunoglobulins, and checking my B12 and D levels again.

Apparently, a huge number of people are dealing with a Vitamin D deficiency without even realizing it. Most internists and endocrinologists don't give it much thought. Honestly, just order at least 5000IU from Amazon and call it a day—then just check your levels whenever you feel like it.
I walk into the endocrinologist's office, and the guy starts lecturing me about neuroborreliosis based on my symptoms, and I'm just sitting there thinking—wait, are you an endocrinologist or an infectious disease specialist?!

Jacob Lopez51 said:Which one is that? Honestly, when I walk into the clinic, they roll out the red carpet for me... so why should I go throwing money away on just one more little test?

Look, if you’re hanging out in a pool or just keeping your hands in warm water for a while—if the skin on your fingertips doesn't prune up or shrivel—then you don't have SFN. And here's another thing: if your hands and feet sweat normally, it isn't small fiber neuropathy. At least, that's what I've heard... though how accurate that actually is, I'm not sure, but MSM thinks it's true.

boldstag58 said:Basically, if you’re hanging out in a pool or just soaking your hands in warm water for a while, and the skin on your fingertips wrinkles up—you know, gets all prune-y—then you don't have Small fiber Neuropathy. The second thing is: if your hands and feet sweat normally, it's not SFN. At least, that's what I heard from MSM, though who knows how accurate that actually is.

Well, then I guess I'm in the clear. That first thing is called pruning, right? Sweet... I'm gonna go celebrate with a few beers.

Jacob Lopez51 said:Then I’ve got nothing. First thing they tell you is that things are just "shrinking"... Yay... Let me go celebrate with a few beers.

I'm in the same boat—my tests come back totally clear, yet the symptoms are absolutely catastrophic. Honestly, I don't know if it's all just anxiety at this point...
That skin Wrinkle test is supposed to be used for early detection of neuropathy. But for me, as soon as those symptoms flare up, my mind immediately jumps straight back to neuropathy...

It’s totally possible. When that dopamine levels out, you probably get those weird sensations—like electric shocks, tingling, or that "pins and needles" feeling... I’ve been taking l-tyrosine paired with 20% CBD along with B-complex 100—or even just Solgar multivitamins—and honestly, it helps me hold it together. It feels better. That part is certain—even a tiny shift in these symptoms can be a massive deal.

Jacob Lopez51 said:What else could be tested? I’m heading back to New York soon for a full workup, so I'll check thyroid antibodies, cortisol, testosterone, immunoglobulins, and B12 and Vitamin D levels.

Apparently, tons of people are Vitamin D deficient without even knowing it. Internists and endocrinologists don't seem to give it much thought. Just order at least 5000IU from Amazon and call it a day... check levels when needed.

I take therapeutic Vitamin D in drops, just as my endocrinologist prescribes, and I feel fine. It took me over six months to treat my deficiency until I finally hit the lower limit. I get checked twice a year, and they set my maintenance doses.

You probably need a solid immunologist to listen to you, review everything, and order the right tests. Then you can decide if you actually need an endocrinologist, a neurologist, or a rheumatologist...

Jacob Lopez51 said:It’s possible. Those sensations like electric shocks, tingling, or pins and needles... they probably happen when dopamine levels drop. I take L-tyrosine with 20% CBD and either B-complex 100 or Solgar multivitamins, and somehow I manage... it feels better. Even a small improvement with these symptoms makes a huge difference.

Hmm, did you know you can actually get those symptoms from having too much of certain B vitamins?

Don't go taking extreme doses of anything on your own for long periods... I really don't think that's a good idea. Just because it's a vitamin doesn't mean it can't be harmful... especially multivitamins, since you rarely need everything all at once, and some minerals shouldn't be taken as supplements for extended periods... You never know how much calcium is in there, and Vitamin D therapy could spike those levels too... It can end up being hard on your kidneys and stuff...

Maybe try taking a break from all the multis and B vitamins to see what happens, or just lower the dosage?

I use Nerufort (HealthAid), which has more of those amino acids that are good for the nerves. I think higher concentrations of B, specifically B1 and B6... should be prescribed by a doctor, and even then, not for too long... I am on B vitamin therapy, but it was prescribed specifically—how much, how often, and what...

Apparently, a B6 excess can trigger those exact symptoms. My B12 was sitting at 500, but my Vitamin D was down at 16.

I’m actually really liking this Nerufort stuff—any idea where I can grab some? Thanks for the heads-up.

Oh, I see you're based out of Chicago—is that not available on iHerb? This looks like what I'm after:

I've been taking 5000IU of Healthy Origins daily for a year now, but honestly, I haven't seen much of a difference.

Jacob Lopez51 said:Supposedly, too much B6 causes those symptoms. My B12 was at 500, and my D was 16.

I like the look of this Nerufort, where can I pick some up? Thanks for the tip.

Oh, I see you're from Belgrade, is it available on iHerb?

I've been taking 5000IU of Healthy Origins daily for a year now, but haven't seen much improvement...

I'm not from Belgrade, I buy it at a pharmacy in Mexico.
Maybe they have it in America.
eBay or Amazon? You'll definitely find it, just avoid buying directly from the manufacturer. People rave about the supplement itself, but they complain about the service—orders don't arrive, customer support is terrible... Check one of those sites instead. Yeah, it's a really good supplement...

Dana Brooks3 said:Hmm, are you aware that those symptoms can actually stem from an excess of certain B vitamins? Just please don't start taking extreme doses of anything on your own for an extended period; I truly don't think that's a good idea. Even if it is a vitamin, that doesn't mean it can't be harmful. In my view, higher concentrations of B vitamins—especially B1 and B6—really should be prescribed by a doctor, and even then, they shouldn't be taken indefinitely. I'm currently on a B vitamin regimen myself, but everything is strictly managed by my physician regarding dosage and frequency.

They certainly can cause harm. Taking Neurobion f (specifically the high doses of B vitamins contained within it) can actually trigger neuropathy if taken for more than three months, even at just one tablet a day. Of course, you can't just pick this up over the counter here without a prescription, but people find ways to get it anyway. They read things on random websites claiming it's a miracle cure or a total panacea, making it seem like a wonder anyone survives without it.🤦
The advertising is often louder than anything else; it drowns out critical thinking, scientific facts, and professional medical advice.

Brenda Alvarez24 said:Advertising is more powerful than anything else; it overrides judgment, scientific facts, medical advice, and rational thought.

I agree.
Everyone should watch that episode of Dr. J where the pathologist spends weeks unable to find the cause of death, only to realize her obsession with health was what actually killed her... a whole collection of colorful pills was found, just blindly taking every popular supplement and multivitamin, which ended up having the exact opposite effect and cost her her life...

Back in the day, my doctor in New York used to prescribe me Neurobion f, explaining exactly how and why, so I knew how potent it was and stayed careful with it, much like how I handle Milgam now... but here, you can just pick up Neurobion over the counter at some pharmacy next to a cosmetics shop... no big deal...😁

So I picked up some Neurobion over the counter, $20 but honestly? One pill and I was done—it made me feel super nauseous.
I’m thinking about just tossing these massive doses and switching over to Solgar Neuro Nutrients... plus, obviously, getting my Vitamin D levels up. Just my luck, though—I already went out and bought a huge 640-count bottle. 😁

Neuro Nutrients is this really complex dietary supplement packed with amino acids, standardized Ginkgo leaf extract, soy lecithin, B vitamins, and Vitamin C.

The combo of B1, B3, B6, B12, folic acid, and biotin helps support healthy psychological function—plus B5 helps keep your mental performance on track.

B1, B2, B3, B6, B12, and biotin also support a healthy nervous system, while B2, B3, B6, and Vitamin C help fight off fatigue and exhaustion.

The powdered Ginkgo biloba extract helps with healthy microcirculation.

DIRECTIONS: Take 2 capsules daily with a meal.

INGREDIENTS PER DAILY DOSE (2 capsules):

L-phenylalanine (free form) 334 mg
L-tyrosine (free form) 334 mg
L-glutamine (free form) 334 mg
Vitamin C (calcium L-ascorbate) 200 mg
Choline (bitartrate) 82 mg
Soy lecithin 66 mg

Standardized Ginkgo biloba leaf powder (containing 3.36 mg / 24% / ginkgo flavone glycosides)

14 mg
Vitamin B2 (riboflavin) 10 mg
Vitamin B3 (nicotinamide) 10 mg
Vitamin B1 (thiamine mononitrate) 10 mg
Vitamin B6 (pyridoxal-5-phosphate) 5 mg

PACKAGING: 30 veggie capsules

great for vegetarians and vegans
sugar-free, salt-free, and starch-free
this stuff doesn't have corn, yeast, wheat, gluten, or dairy, and it's formulated without any preservatives, artificial flavors, or dyes.

I’m back. A bit late to the party, I suppose. I just wrapped up an appointment with my immunologist, Dubravka Bosnić, and her recommendation was to run more tests to rule out sarcoidosis and Sjogren. Well, the blood work and chest X-ray came back negative for sarcoidosis, and the blood tests (SS-A, SS-B) along with the Schirmer test confirmed it isn't Sjogren either. Her grand conclusion? A classic "we'll wait and see." In plain English, that translates to: "I have absolutely no clue what is happening to you," though she did mention that my symptoms point toward subcutaneous nerve damage. Unfortunately, here in the US, there isn't even a dedicated Small fiber Neuropathy search in our standard medical protocols. I simply nodded, played the part of the compliant patient, and walked out. I’ve cycled through at least 30 different doctors by now, and yet I haven't received a single shred of information that I didn't already know myself. Since I posted here last, things have taken a turn for the worse—and they aren't stopping. These flare-ups feel like a potential autoimmune reaction, yet I still lack a definitive diagnosis that would actually allow for any meaningful treatment. On my bad days, my eyes become bloodshot and angry, my muscles tighten like guitar strings pulled to the snapping point—twitching so violently I lose control of my movements—and the paresthesia and dysesthesia reach such agonizing levels that even the sensation of wearing clothes is unbearable. Honestly, some days it feels easier to just call in sick than to endure the torture of being dressed at the office all day. As for painkillers, I’m taking nothing. I’ve tried everything under the sun, and frankly, none of it touches this. The only thing keeping me somewhat sane and focused is Normabel, but even that occasionally fails to stop the intrusive thoughts of slathering lidocaine on my wrists just to make the urge to cut my veins go away.

I truly, sincerely hope that you wonderful people, and everyone you hold dear, never have to face anything even remotely like this.

The symptoms started about a year ago. In that short span, I’ve gone from being a fit, happy, and deeply in love kid—I'm only 23, after all—to someone whom my own loved ones have pushed away, a person who spends his nights scratching at the walls and weeping because this pain is quite literally indescribable.

I wish you all the best. If you need advice, I’m here. If you have any advice for me, I’m listening.

Peace.

boldstag58 said:Harold Reed4
Reach out if you're still hanging around. I actually know of a straightforward little test—or so I've heard—that serves as a reliable way to determine whether or not you're dealing with Small fiber Neuropathy.

I’ve done some rather deep diving into this particular test, and I even decided to run it on myself. As it turns out, the test isn't actually an assessment of whether one has SFN, per se; rather, it measures whether there is autonomic neuropathy (dysautonomia) present, which unfortunately crops up in over 50% of SFN patients. My fingers and toes still "prune" up normally when submerged, but that simply means my autonomic nervous system hasn't taken a hit just yet. We shall have to wait and see how things evolve as time marches on.