Posts by boldstag58

Andrew Miller87 said:Hi. I just stumbled upon this thread regarding this condition, so I registered just to ask a few things.

First, let me lay out my history and symptoms. The first time I felt tingling and intense pain in my legs was back in elementary school when I kicked a soccer ball—that was over 15 years ago (I'm 29 now). I remember wondering why the other kids could kick a ball with everything they had and feel nothing; I asked my buddies if they felt tingling too, and the answer was no... A year or two later, my hands started burning quite a bit whenever I walked (a burning sensation on the skin of my palms, almost like a thermal burn)... Over the years, various symptoms have cropped up—some fade over time, others intensify. Right now, I’m dealing with enough symptoms to make it hard to function. When I work a physical job or train, it hits me hard a day or two afterward—the intensity of the symptoms seems directly tied to my physical activity level. If I push myself too much, the pain gets worse and lasts longer. I rarely get the tingling these days; mostly, it's the burning on my hands, weakness in my hands and feet (I can't grip things tightly), extremities that are ice-cold, and pain in my joints, hands, shoulders, neck, and back. I find the most relief when I’m just "flopped" in bed... My shoulders also kill me generally whenever I do anything with my arms raised (for example, I can't paint a room; if I hold the brush up for more than 30 seconds, my arms just give out from the pain). My fingers don't cooperate well either—I miss keys on the keyboard, and I struggle with writing or drawing... My memory and concentration are also pretty terrible. My legs serve me better than my hands, so I can walk quite a bit. I freeze and shiver outdoors whenever the temperature drops below 55 degrees, even if I'm dressed well (the burning sensation isn't there then, but once my hands warm up in the heat, the burning starts again). One strange symptom that might or might not be related to the root cause is that I'm allergic to the sun; after being out too long, I get a rash, the itching is unbearable, and my skin turns red and white (not your typical sunburn). For years, doctors tried to write my symptoms off as psychological, just like they did with many others, even though the symptoms are always present and not just during times of anxiety. About two years ago, a neurologist gave me a diagnosis of idiopathic neuropathy—that was the first time I'd even heard of it. I took pregabalin for three months; I felt better for the first two weeks, but then things worsened, so I quit. Before that, I went through a mountain of different medications, and I honestly forget what they all were. I had an EMG, which came back negative, then I learned about small fiber neuropathy (SFN), since apparently, it's one of those rare cases among hundreds where the EMG shows nothing. I've run all sorts of tests over the years, and I don't have any of the well-known autoimmune diseases. In my bloodwork, my platelet count is right at the lower limit, and my bilirubin was elevated, though that was likely due to gallstones, which I had removed a month ago...

My question is this: Since some members mentioned that you can get a skin biopsy in Washington, D.C. to check for SFN—which one of my neurologists in Nashville also mentioned—which clinic actually performs this? Has anyone here done it? There are biopsies available in various clinics, but not all of them actually test those specific fibers; most seem to only look for skin diseases, fungi, etc.

Hey Andrew Miller87
I have a lot of similar symptoms. I don't know what else it could be—small fiber neuropathy, erythromelalgia (since I get redness in my palms and soles sometimes), Raynaud's syndrome (because my feet are freezing all winter), POTS... It all feels like the same thing.
Since my diagnosis, I've had erythromelalgia, and a dermatologist told me there isn't much help for it, which is true. I also have a diagnosis of joint hypermobility; I personally believe it's actually hypermobile Ehlers-Danlos syndrome, which isn't really talked about much here and isn't treated anywhere—they just treat the symptoms. All of this other stuff could very well stem from that.
As for skin biopsies—I don’t personally know anyone who’s gone through it, but I heard from someone a few years back that you can get it done at a major university hospital like Johns Hopkins... though you need a formal referral first. And honestly, how are you supposed to secure a referral when half the neurologists and GPs out there haven't even heard of small fiber neuropathy? It's a joke.
Where are you located? It sounds like we might be in the same neck of the woods—assuming you're near Nashville.

I'll shoot you a DM.

Harold Reed4 said:Every single piece of information I’ve shared is accurate—it comes directly from doctors here in the States and specialists abroad. Everything prior to 2010 was essentially just the experimental phase—doctors trying to figure out what the hell was actually causing this. Since those breakthroughs in 2010, we haven't seen much actual progress... nothing. They've identified autoimmune and non-autoimmune triggers, sure, but they still have absolutely no clue what's going on with the 70% of people who are perfectly healthy by every other medical standard but suffer from SFN. As for the timing of symptoms, frankly, I don't give a damn what time of day it is—there's zero difference whether it's 3 AM or 3 PM. None of that data matters. There are endless forums and Facebook groups filled with SFN patients, and everyone describes the exact same thing—literally everything. We all have diagnosed severe SFN, our fingertips are visibly shrinking, we can distinguish hot from cold normally, and our initial QST or even early biopsies come back looking totally fine... it's only the follow-up biopsies that reveal the nerve fiber loss. If you want 100% certainty in diagnosing SFN, the rule is three consecutive biopsies over the span of a year, where each subsequent one shows a progressive decrease in small fiber count. We can console ourselves all we want, but I started this thread for a specific reason: I need to find out where I can get testing done so I can have it in black and white—including that photo they include in the report—proving I actually have neuropathy. That way, I wouldn't look like a lunatic to everyone else, and maybe doctors would actually step up if they saw I wasn't just making it up. Right now, I'm just stuck with these horrific symptoms while everyone else ignores me because, on the outside, I look completely fine. It's pretty pathetic, really...

Alright, one last question: is it possible to exhibit every single symptom of SFN without actually having the syndrome itself? Regards.

boldstag58 said:And tell me this—how does it actually feel at night when you finally lie down to sleep? Do the symptoms die down, or does everything just get worse? I find that part suspicious... personally, my symptoms mostly subside once I'm in bed, which isn't really typical for SFN at all—it’s actually the exact opposite.

Also, what you mentioned regarding the 2010 data for SFN isn't accurate.

boldstag58 said:Look, if the skin biopsy comes back clean—meaning no visible damage—and all the other tests pass too, that would suggest the nerve function itself is just off... it could be underactive or overactive, but either way, that’s arguably better than actual physical structural damage. If there's no physical destruction, things might actually shift or improve down the road. At least, that's my take on it...

Also, tell me—how are you holding up at night when you try to sleep? Do the symptoms let up, or does it actually get worse? I find that part suspicious... for me, everything usually settles down once night hits, which isn't really typical for SFN at all. In fact, it's almost the opposite of what you'd expect.

Harold Reed4 said:Look, I’m fully aware that’s an option—just like doctors are aware of it. I have a friend over in the Netherlands dealing with the exact same issues; he went through a biopsy and it came back negative. He sent me a photo of the results, and it explicitly states that a negative finding doesn't mean you don't have neuropathy—instead, that result serves as the baseline for all future comparisons. That was last August... now, this August, he’s heading back in to redo the biopsy. If the nerve count shows a decrease compared to that first baseline, then yeah, there's neuropathy. If not, then there isn't. In the end, his doctors basically told him they can't help much because this whole field is still so new to them. SFN isn't actually a disease itself, it's just a symptom... and it wasn't even officially recognized until 2010. Since there's no underlying cause in over 70% of cases, there’s really no shot at a "cure." You just have to learn how to live with it...

Look at it this way: if a skin biopsy shows no visible damage, and other tests pass as well, it means the nerve function might just be off—it could be diminished or even hyperactive. Honestly, that's better than having actual physical damage... maybe things could shift down the road. At least that's my take on it.

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...

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.

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.

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.

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 😂

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...

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.

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...

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.

Harold Reed4
Reach out if you're still hanging around. I know of this one straightforward test—heard it’s pretty reliable—to help figure out if you're actually dealing with Small fiber Neuropathy or not.

How are you holding up lately? Did you end up getting that skin biopsy done yet? I’ve been dealing with some symptoms myself... starting to suspect it might be this...