Small fiber neuropathy (SFN) experiences

Brenda Alvarez24 said:Harold Reed4,
are you still hanging around somewhere?
What ended up happening with the immunologist?
I know that with certain autoimmune conditions, like Sjögren or sarcoidosis, you can end up with SFN.
I assume that’s treated with steroids 🤷 🤔 ... my own polyneuropathy (granted, it isn't quite the same thing, but mine is linked to SLE, and Sjögren and Lupus are essentially cousins) vanished completely once I was on Medrol. But they aren't identical, and the real question is identifying the underlying cause, so this is just me thinking out loud...

You're absolutely right on all counts. Neuropathy often accompanies sarcoidosis, lupus, and Sjögren. My lab results haven't given the doctors enough clues to provide a definitive diagnosis yet, but considering my neuropathy is systemic—affecting my entire body rather than just being localized to my feet or hands—that specific pattern is most frequently linked to seronegative Sjögren syndrome. "Seronegative" essentially means the blood work won't show positive markers, leading doctors to easily conclude that Sjögren isn't present. In reality, the only way to catch it is through a salivary gland biopsy, which can actually reveal the presence of antibodies. In over 90% of cases, seronegative Sjögren manifests initially as neuropathy as the primary symptom; the classic signs like dry eyes, red eyes, or dry mouth only appear later, and by the time the blood work finally turns positive, the damage is often already done. I haven't undergone the biopsy yet—part of me is hoping something else will surface first that offers a solution—but I suspect I'll have to face that procedure sooner rather than later.

Dana Brooks3 said:It looks like the Mayo Clinic is handling this.

I actually reached out to this clinic back in November 2019, and they informed me that they weren't performing Small fiber Neuropathy searches at the time. Even though I pointed them directly toward that specific article, they claimed they still weren't equipped to handle it. They mentioned they were currently in consultations with specialists in Italy and were hopeful they could offer those services sometime soon.

Hey Harold Reed4,

A few thoughts:
You mentioned things have been getting worse—did some major stress trigger that?

Honestly, I think you should just get a full immunology panel done at a place like the Mayo Clinic. Once you have the actual data, there’s no more guessing games, and it shouldn't cost an arm and a leg..

My gut feeling? I don't think this is actually SFN—I think your dopamine levels are just totally fried...

Have you tried going no-fap?

This whole thing is super complicated. You're really hyper-focused on that SFN diagnosis, and maybe you're right... Who knows. The brain is such a black box, and everything seems to start there...

I really hope you get a solid diagnosis eventually, even if it turns out to be something else entirely. Good luck..

Immunologica confirmed that based on my description of the symptoms, it can't be anything other than SFN. But honestly, that wasn't even the main point. SFN is just a symptom in itself; until I figure out what's actually driving it, it doesn't much matter whether I sought testing here in the States or overseas. At this stage, I really just need to learn how to manage the symptoms themselves. And before anyone suggests stress is the culprit—it isn't. It’s not like you gain ten pounds overnight, and similarly, things didn't just take a turn for the worse in a single day. However, if you look at it in six-month increments, the difference is undeniable. Six months ago, the flares were much milder and less frequent, and twelve months ago, the symptoms were strictly limited to below the knees. The progression is clearly visible.

There's nothing left to do but hope it stabilizes sometime soon. I'd really rather not end up disabled before I hit thirty.

dhanurx said:Honestly, you all seem to be dealing with lung issues. All this talk of neuropathy, lupus, and whatnot... it can all be sorted out simply by standing up straight (shoulders back), maintaining proper posture in your head and neck, strengthening your core through weightlifting or running, doing some sit-ups, and practicing breathing exercises. Essentially, you need to ensure your abdomen and solar plexus aren't sucking up all your energy—through overthinking, dominance, or neuroticism—at the expense of your upper organs, like your heart, lungs, thymus, and liver.

I am truly sorry if you actually believe that conditions like neuropathy or lupus can be cured just by fixing your posture. Please, I beg you, step away from this discussion. Goodbye.

Harold Reed4 said:Immunologica confirmed that based on my symptoms, it can't be anything other than SFN—but honestly, that wasn't even the main point. SFN is just the symptom itself, and until I figure out what's actually driving it, it doesn't really matter if I sought testing in the US or elsewhere. I just have to learn how to live with the symptoms now. And no, stress didn't cause this sudden dip; it’s just how it goes. It's like you don't gain weight overnight, and it's not like things got worse in a single day either—but if you look at six-month stretches, things were way milder and flares were much less frequent six months ago. Even twelve months ago, the symptoms were only from the knees down, so the progression is definitely noticeable.

At this point, there's nothing left to do but hope it stabilizes eventually. I really don't want to end up disabled before I hit 30.

I really hope you find some answers. Personally, I should probably stay away from these kinds of threads because of my own hypochondria—you can find something to worry about in everything. Somehow I'm doing better, though my situation isn't quite like yours, but I still get it... what you're going through is truly extreme and I'm so sorry...

Harold Reed4 said:Immunologica confirmed that based on my description of symptoms, it can't be anything other than SFN—but honestly, that wasn't even the point. SFN is just a symptom, and until I figure out what's actually driving it, it doesn't really matter whether I sought testing in the US or elsewhere... I just have to learn how to live with the sensations. Stress didn't cause this sudden decline; it's just how it goes. You don't gain weight overnight, and you don't get worse overnight either—but if I look at six-month intervals, things were much milder six months ago with less frequent flares, and twelve months ago, the symptoms were strictly from the knee down... so the progression is definitely noticeable.

There’s nothing left to do but hope it stabilizes eventually; I really don't want to end up disabled before I hit 30.

Look, here's the reality. We're in the exact same mess, except mine has been dragging on for five or six months. Beyond that, I've dealt with a mountain of issues for six years now that everyone just writes off as depression. I deal with stomach issues, urinary problems, heart palpitations when I stand up (POTS), and for the last five or six months, I've had foot pain that becomes absolutely unbearable if I stand for more than two minutes. The pain radiates all the way up to my knee. Then there's the itching in my feet after walking, and lately, I've become sensitive to the texture of my clothes and getting this burning sensation in my back. Regarding what you mentioned about skin numbness—it isn't quite 100% accurate. I've done my own research on that too, unfortunately. That skin wrinkle test has a sensitivity level almost comparable to a skin biopsy. I tried using EMLA cream and warm water, and while the numbness improves, I still suspect neuropathy. But I don't know if you have joint issues... my knees have been aching and clicking for years. I have hyperextension and hypermobility, plus stretchy skin, which makes me suspect Ehlers-Danlos syndrome. However, finding a specialist to actually diagnose that here in the States is a struggle. The main point is that most people with that syndrome also suffer from small fiber neuropathy. Of course, I don't know if you're dealing with those specific issues. I honestly don't know how you manage to function constantly with all this; I wouldn't stand a chance, even with anxiety medication. Around here, the specialized biopsies for small fiber neuropathy are hard to come by—you usually have to go to a major center like the Mayo Clinic to see someone like Sanja Milenković, though obviously, they aren't doing everything right now because of the pandemic. I'm still holding onto the hope that it isn't neuropathy, even though I'm barely functioning as it is.

boldstag58 said:Look, it’s the same mess, just my version has been dragging on for five or six months now. To be honest, I’ve been dealing with a mountain of issues for about six years that everyone just chalked up to depression. I have stomach problems, urinary issues, and heart palpitations whenever I stand up (POTS), but for the last few months, the pain in my foot has become absolutely unbearable if I stand for more than two minutes. The pain shoots all the way up to my knee. Then there's the itching in my feet after walking, and lately, even my clothes feel irritatingly sensitive, not to mention this stinging sensation in my back. Regarding what you mentioned about numbing the skin—it isn't quite as straightforward as it sounds. I’ve done my homework on that, unfortunately. That skin wrinkle test actually has a sensitivity level nearly comparable to a skin biopsy. I tested it using EMLA cream and warm water; the area numbs up well enough, but I still have my suspicions about neuropathy. I'm not sure, though—do you deal with joint issues? My knees have been aching and clicking for years. I have hyperextension and hypermobility, along with stretchy skin, which makes me suspect I might have Ehlers-Danlos syndrome. Unfortunately, here in America, finding a specialist who can actually give you a definitive diagnosis is a nightmare. The crux of the matter is that most people living with that syndrome also suffer from small fiber neuropathy. Of course, I don't know if you're experiencing those specific symptoms. I honestly can't fathom how you manage to keep working through all of this; personally, I wouldn't stand a chance, even with anti-anxiety meds. In my area, the only place to get a small fiber neuropathy biopsy is at the Mayo Clinic under Dr. Sanja Milenković, though naturally, they aren't performing them right now due to the COVID situation. I keep holding onto the hope that it isn't neuropathy, even though I'm barely functioning.

I work because I have to; someone has to cover the rent and the utility bills. There's no other way. I possess a certain level of discipline and mental fortitude—animalistic, really—so I just grit my teeth and push through. That’s the plan, I suppose: keep going until the day I drop dead. If I give up, then I'm truly finished.

Harold Reed4 said:I work because I have to—who else is going to cover the rent and the utility bills? There’s no other way. I’ve got discipline and mental toughness like an animal... I just grit my teeth and push through. That’s how I’ll handle everything until the day I drop dead. If I quit now, I'm finished.

But what happens if you eventually get a biopsy and it comes back negative? I know there are people who deal with all the classic SFN symptoms, yet not a single test shows up positive—not even a skin biopsy. You've already gone through the QST, though...

boldstag58 said:But what if you eventually get a biopsy done and it comes back negative? I know there are people who deal with all the SFN symptoms but don't test positive on anything—not even a skin biopsy—and you've already gone through the QST.

That’s exactly how it’ll go. Honestly, I don't know if it's possible that neurotransmitters are just totally fried here too—like, their actual dysfunction is driving this whole thing. If that's the case, then all these messy diagnoses like this one, fibromyalgia, BFS, or chronic Lyme are basically just a completely burnt-out dopamine system. It might actually be a decent explanation for why SSRIs don't really do much... there have been plenty of papers on that. Psychiatrists don't seem to give dopamine nearly enough credit, to be honest.

Jacob Lopez51 said:That’s probably how it goes—I mean, there's a real chance the neurotransmitters are just fried in this area too, where the actual burnout is driving the whole thing. If that's the case, then all these nasty conditions like this one, fibromyalgia, BFS, or chronic Lyme... they're basically just a totally scorched dopamine system. It might actually be a logical explanation for why SSRIs don't do much of anything... there have been plenty of papers on that topic already. Honestly, psychiatrists don't seem to give dopamine nearly enough credit...

That's exactly why I'm switching over to THC—higher doses, just to see what happens—because I've noticed that nobody dealing with these issues, regardless of whether it's actually from SFN, a dopamine crash, or whatever else, ever claims their meds actually made a dent. The best feedback I've heard is that it helped "minimally" at best. At this point, I'd rather go with something natural 😂

boldstag58 said:That's why I'm switching over to THC—just taking higher doses and seeing where it goes—because honestly, I haven't heard anyone dealing with this stuff, whether it’s actually SFN, low dopamine, or whatever else, say that meds actually worked. The best feedback I've heard is that they barely helped at all. So yeah, better to go with something natural. 🤷‍♂️

You're totally right. I was using CBD, and now I'm on 5-HTP and tyrosine. I stack both because—look—if you only take one, the other side just crashes.
Helex at 0.5 mg always did the trick for chilling out those sensory symptoms, and since it's an anxiolytic that hits those GABA receptors again... man, the brain is wild—all that chemistry, receptors, neurotransmitters, etc.
As for Zoloft, Lyrica, or Qpin, there wasn't any dramatic improvement—mostly just sedation and feeling like my dopamine was completely trashed by morning, leaving me with zero motivation and total lethargy. That doesn't work for me; I can't be showing up to work looking like I'm under some kind of spell.
Now, tyrosine gets me hyped up first thing in the morning, and for chilling out before bed, I use 5-HTP—maybe throwing in some 20% CBD or a stronger dose of Helex in between.

Jacob Lopez51 said:You're spot on. I’ve been cycling through CBD, and lately, 5-HTP and Tyrosine. I try to boost both—because if you only take one, the other side just crashes...
Helex at 0.5 mg always does the trick for chilling out those sensory symptoms, since it's an anxiolytic that hits those GABA receptors again... the brain is such a crazy thing—all that chemistry, receptors, neurotransmitters, etc...
With Zoloft, Lyrica, and Qpin, I didn't see any dramatic improvements—more like just sedation, and honestly, it felt like it completely wrecked my dopamine levels first thing in the morning. Just pure lethargy and zero drive, which isn't exactly helpful when I don't want to look totally out of it at work...
Now, Tyrosine gives me that immediate hype in the morning, and for winding down before bed, I use 5-HTP—sometimes I'll slot in some 20% CBD or a higher dose of Helex in between...

By the way, did you ever undergo QST testing? I know you've mentioned it here before, but I can't be bothered to dig through all your old posts right now. Do you have the typical symptoms? How long have you been dealing with these SFN-related issues? You mentioned seeing some improvement, which is good to hear. For me, sedatives help a little—maybe by about 15 or 20 percent at most.

boldstag58 said:Hey, did you ever do a QST? I know you’ve posted about this before—I can't be bothered to dig through all your old threads right now. Do you have the classic symptoms? How long have you been dealing with this SFN stuff? It’s good to hear you actually saw some improvement, though. For me, sedatives help just a little bit—maybe like 15 or 20 percent at most.

I've got BFS—constant fasciculations in both feet along with this weird twitching and tingling sensation. Plus, there's that tingling feeling in my head, which hits me every now and then.
Just strange stuff... honestly, who knows what's actually going on. I've done five MRIs, three EMGs, and a mountain of lab tests.

I've had BFS in my feet for 16 years straight. It used to be all over my body, but now it's mostly just my lower legs and feet. In my feet, it feels like popping popcorn...

Jacob Lopez51 said:I deal with BFS—constant fasciculations in both feet along with those weird twitching sensations and tingling. I get that tingling sensation in my head too, sometimes it even feels like a cramp.
Just strange stuff... who knows what's actually causing it. I've gone through 5 MRIs, 3 EMGs, and a whole mountain of lab tests.

I've been dealing with BFS in my feet for 16 years straight—it used to be all over my body, but now it's mostly just my lower legs and feet. In my feet, it feels like... popping popcorn...

Man, you've really been fighting this for a long time—I'm still pretty new to all of this. Honestly, mad respect if you're still working through these symptoms; I had to quit. I can't even stand on my feet without my leg muscles starting to spasm, damn. And since I worked a physical job, it just... wasn't possible for me anymore.

boldstag58 said:Man, you’ve been fighting this for a seriously long time—I’m still pretty new to all of this. Honestly, major respect if you’re managing to push through with those symptoms. I actually had to call it quits—I just couldn't stay on my feet without my leg muscles seizing up on me, damn. And since I worked a physical job, it was just straight-up impossible for me.

The foot stuff wouldn't even bother me because I've already figured out how to live with that—but this sensation in my head? It feels like a swarm of ants is crawling around in there, like I'm some kind of junkie. It's way too easy to just blame anxiety or hypochondria, but I haven't heard of anyone dealing with "ants in the brain" for two years straight just because they're anxious...

I don't get any weakness or muscle spasms.

Jacob Lopez51 said:I honestly couldn't care less about the issues in my feet—I've already learned how to live with that—but this sensation in my head? It feels like a swarm of ants crawling around my skull... like I'm some sort of junkie. It’s easy enough to blame anxiety or hypochondria, sure, but I haven't heard of anyone dealing with head tingling for two years straight just because they're anxious...

I don't have any muscle weakness or cramping.

Unfortunately, our doctors here tend to refer you straight to a psychiatrist the second anything comes up.
I don't get that burning sensation in my legs or feet, but I do deal with mild cramping during light walks, and there's weakness too—plus, lately, my back has been stinging. And every night, right before I drift off, it's the same thing... that tingling in my head. Even if I take a sedative, the "ants" just come back... damn.

It’s honestly hard to act like everything's fine when you're dealing with this. If it were just some random BSF thing—you know, just a bad day at work—it wouldn't be such a big deal, but this hits way deeper than that.. And if we're talking about a diagnosis like psychosomatic disorder, I guess that might mean something to some people, but most of us don't really have those kinds of labels to lean on anyway..

Jacob Lopez51 said:It’s hard to stay level-headed about this stuff. If it were just BFS, maybe... but when it starts hitting your head like this, it doesn't really fit the mold. And if they call it some kind of psychosomatic disorder, well, that's just their way of saying "we don't know what's wrong with you."

Look, I've been dealing with joint issues for years—various diagnoses, hypermobility, all that. So, I'm pretty convinced it's neuropathy at this point. Honestly, if I end up getting a biopsy done in Belgrade—assuming they actually give me the referral—I’d be floored if it came back negative. But hey, only time will tell...

boldstag58 said:But what happens if you eventually get a biopsy and it comes back negative? I know there are people who exhibit all the classic symptoms of SFN, yet not a single test—not even a skin biopsy—comes up positive. You’ve already gone through the QST, after all.

I am fully aware that this is a possibility; in fact, it's something doctors are quite aware of as well. I have a friend over in the Netherlands dealing with these exact same issues. He underwent a biopsy and the results were negative. He actually sent me a photo of the report, and it explicitly states that a negative result doesn't mean you don't have neuropathy. Instead, that initial result serves as the baseline for all future comparisons. This happened back in August of last year, and he's heading back for another biopsy this August. If the nerve density has decreased compared to that first baseline, then we have our answer regarding the neuropathy; if not, then there isn't one. Ultimately, his doctors told him they can't really offer much help because this entire field is still so nascent to them. You see, SFN isn't a standalone disease—it's a symptom. It wasn't even officially recognized as its own entity until 2010. Given that in over 70% of cases there is no identifiable cause, the chances of finding a "cure" are virtually non-existent. One simply has to learn how to live with it.