Small fiber neuropathy (SFN) experiences

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.

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.

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.

Every single piece of information I’ve shared is accurate, sourced directly from doctors here in the States as well as specialists abroad. Everything prior to 2010 was essentially just an experimental phase—doctors were essentially playing detective, trying to sniff out potential causes. Since those breakthroughs in 2010, we haven't seen any real progress. Sure, they've identified autoimmune and non-autoimmune triggers, but there is still a massive, gaping hole in our understanding regarding the 70% of patients who appear perfectly healthy in every other medical aspect yet suffer from SFN. As for the timing of symptoms? Honestly, it doesn't mean a damn thing. It makes no difference whether it’s 3:00 AM or 3:00 PM; the pain is relentless regardless. None of that data is actually useful. If you look at the countless forums and Facebook groups filled with people living with SFN, everyone describes the exact same hellish experience. We’re talking about people with diagnosed severe SFN whose fingers are visibly shrinking, who struggle to distinguish heat from cold, and who might even show a normal QST or a normal initial biopsy—only for subsequent biopsies to reveal the progressive loss of nerve fibers. In my view, the gold standard for a definitive SFN diagnosis is three consecutive biopsies over the span of a year, where each successive test shows a further decline in small fiber count. We can try to comfort ourselves all we want, but I didn't start this thread just to vent. My goal is to find someone who can help me get this documented officially. I need it in black and white—including that specific photograph they include in the report—proving that I have neuropathy. I need that paper trail so I stop looking like a lunatic to everyone around me, and perhaps more importantly, so doctors might actually take action once they see the physical evidence. Right now, I'm just stuck dealing with horrific symptoms while the rest of the world looks at me, sees nothing wrong on the surface, and fails to grasp what I'm going through. It is profoundly tragic.

Jacob Lopez51 said:You make a fair point. I’ve been cycling through CBD, and lately, I've added 5-HTP and tyrosine to the mix. I find it best to boost both simultaneously; if you only focus on one, the other tends to dip, doesn't it?
A 0.5 dose of Helex always does the trick for chilling out those sensory symptoms. Since it's an anxiolytic that hits those GABA receptors again... man, the brain is such a complex thing, isn't it? All that chemistry, the various receptors, the neurotransmitters, and so on.
I didn't see any dramatic improvements from Zoloft, Lyrica, or Qpin—mostly just sedation. It felt like they completely tanked my dopamine levels right from the jump, leaving me with this sense of lethargy and zero drive. That's just not helpful when I need to stay sharp and productive at work.
Nowadays, tyrosine gives me that immediate morning hype I need, and for winding down before bed, I use 5-HTP. In between, I’ll toss in either some 20% CBD or a slightly higher dose of Helex to stay level.

Could you tell me which tyrosine you're using? If you have a link, that would be great. thanks.

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.

restlessbadger2 said:Hey, let me know which tyrosine you're using—can you drop a link? thanks.

https://hr.iherb.com/pr/now-foods-l-...0-capsules/836

Grab some 5-HTP too https://hr.iherb.com/pr/Now-Foods-5-...g-Capsules/306

The ratio needs to be 5:1... that’s how you gotta take it for it to be ideal. Honestly, 5-HTP works like a natural Prozac for me—it totally fixed my sleep so I'm not waking up three times a night..

The only side effect is that your dreams get a little more intense during the first 10 days.

Take the tyrosine in the morning on an empty stomach with a banana, then hit the 5-HTP right before bed.
Taking one without the other is pretty pointless, because just taking tyrosine will end up tanking your serotonin levels pretty quick.

Depression, anxiety, and all those other diagnoses and syndromes—they're all caused by messed up neurotransmitters. With these kinds of neuro syndromes, most of the time it's just totally burnt out dopamine..

boldstag58 said:Alright, one last question: is it actually possible to experience every single symptom associated with SFN without actually having the syndrome itself? Best,

Well, if that were even a possibility, they’d have to come up with an entirely different name for whatever that other condition is. At the end of the day, all our symptoms point directly to nerve damage. It's like trying to describe a broken engine without calling it a mechanical failure—the symptoms are the reality. The only silver lining we can really pray for is that whatever is happening isn't progressive, and that it eventually just hits a plateau and stops right where it is.

Jacob Lopez51 said:https://hr.iherb.com/pr/now-foods-l-...0-capsules/836

You should probably grab some 5-HTP too https://hr.iherb.com/pr/Now-Foods-5-...g-Capsules/306.

The ratio really needs to be 5:1 for it to be effective. Personally, I find 5-HTP works almost like a natural Prozac; it significantly improved my sleep quality so I'm not waking up three times a night anymore.

The only real side effect I noticed was having somewhat more vivid dreams during the first ten days.

My suggestion would be to take Tyrosine on an empty stomach in the morning with a banana, and then take the 5-HTP right before bed.
It doesn't make much sense to take one without the other, because if you just take Tyrosine by itself, you might end up depleting your serotonin levels quite quickly.

Depression, anxiety, and various other disorders often stem from messed-up neurotransmitters. In many of these neurological syndromes, the root issue is often completely burned-out dopamine.

Oh, thanks so much! 👍

I'm really struggling with this fragmented sleep; I wake up every two or three hours, which is enough to drive anyone crazy. I just can't seem to get enough rest. 🙂

I actually started using a 20% CBD resin spray yesterday, but I slept even worse last night. 😵 Do you find anything more helpful than CBDA? I read somewhere that you had tried that as well. 🤔

Edit: Does iHerb still ship to the US during the pandemic? 🤔 And what's the limit on the package value—around $53 including shipping, right?

restlessbadger2 said:man, thanks so much 👍

this broken sleep situation is seriously killing me—I'm waking up every 2 or 3 hours, and honestly, it's enough to drive anyone crazy. I just can't get any actual rest 🙂

I started using 20% CBD oil spray yesterday, and man, I slept even worse last night 😵 do you have anything that works better than CBDA? I read somewhere that you used that too? 🤔

edit: does iHerb still ship to the States during the pandemic? 🤔 How much can the total package cost before hitting limits, maybe around $53 including shipping, right?

I ordered both of those things and didn't get hit with any extra fees at all... they definitely ship here as far as I know.

CBD is really just for first aid—I'd say it basically just wets down the receptors, whereas these two actually penetrate when things are lacking :P
So yeah, unfortunately, CBD isn't the fix for heavy depression or anxiety because it doesn't significantly boost your neurotransmitters; it acts more like an anxiolytic.

Jacob Lopez51 said:I ordered both of those and didn't get hit with any extra fees... as far as I know, they just deliver it straight to you.

I view CBD more as a first-aid measure; I’d say it sort of "moisturizes" the receptors, whereas these two actually penetrate when expression is lacking. 👁️
So, unfortunately, CBD isn't really the answer for severe depression or anxiety, because it doesn't significantly boost neurotransmitters—it acts much more like an anxiolytic.

I started taking CBD oil to deal with chronic pain, but I haven't noticed much of a shift yet (granted, it's only my second day), and if anything, my sleep has gotten even worse. 😵 I don't quite know what to make of that. And once I finally do manage to drift off, my dreams are just absolute nonsense. 🤦

Harold Reed4 said:Tramadol, Lyrica, Neurontin, various antidepressants, anticonvulsants... nothing. Not even a 1% improvement.

Hey, I'm in the exact same boat. The standard neuropathy meds don't touch the pain for me—honestly, they sometimes make things feel even worse. You might want to look into low-dose Naltrexone. We're talking 3 to 6 mg a day. (In the US, you can get specific doses, whereas elsewhere people often have to buy the 50 mg pills and dilute them themselves). I've been on it for 10 months now, and I can say it's the first thing that actually delivers results for me.
Good luck out there.

Harold Reed4 said:Hey there,

For me, it’s all over—paresthesia, skin feeling super sensitive to clothing, and just all these weird, painful sensations. Nothing I take seems to touch the pain.

Maybe give low-dose Naltrexone a shot.

Jacob Lopez51 said:I couldn't care less about the foot issues because I've already learned how to live with those. But this sensation in my head? It feels like a swarm of ants. It’s like being on some kind of drug. It’s easy 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.

God, I was actually starting to think I was losing my mind. I've had this tingling sensation for the last four months, and every doctor tells me it's just anxiety. The thing is, I feel happier than I ever have. What are you taking to make this tingling stop? I don't even notice it during the day when I'm moving around; it only hits at night once I lie down and settle in. Then I can't sleep. It happens every single night. :/

vividrider7 said:Man, I seriously thought I was losing my mind. I’ve had this constant tingling sensation for about 4 months now, and every doctor I see just tells me it’s anxiety. But honestly? I feel happier than ever. What are you taking to make this tingling stop? I don't even notice it during the day when I'm moving around—it only hits me at night once I lie down and settle in, and then I can't sleep. And it happens every single night :/

Honestly, it’s just Xanax or Helex... Ashwagandha helps lower cortisol, so things feel a bit better, but you really need the anxiolytics. I don't think an antidepressant would do much here—I mean, if an anxiolytic that works on GABA receptors basically resets your baseline to "normal," then an SSRI isn't really the answer, especially since I don't even feel depressed... just anxious, I guess, from the sheer amount of caffeine I consume. I take Ashwagandha, I dose dopamine with Tyrosine when my energy is low, and I take Helex as needed. To be clear, I should probably be taking it every day, but that's dangerous because it's addictive, so I try to just power through it... nighttime is definitely the worst part.
That muscle twitching could be neurological, maybe related to BFS, or from a psychological standpoint, it could be a psychosomatic disorder..
later

Jacob Lopez51 said:It’s just Xanax or Helex... look, Ashwagandha helps lower cortisol, so things feel slightly better, but you really need actual anxiolytics. Honestly, I don't think an antidepressant would even touch this; if an anxiolytic targeting GABA receptors resets everything to what should be a "normal" state, then there's no point in SSRIs—besides, I don't even feel depressed... just incredibly anxious, probably because of the 10g. Currently, I'm taking Ashwagandha, dosing dopamine with Tyrosine when my energy bottoms out, and using Helex as needed. Let’s be clear: I should probably be taking it daily, but that’s dangerous because of the addiction risk, so I just try to tough it out. It's always worst at night.
That has everything to do with muscle twitching from a neurological standpoint or BFS, whereas from a psychological perspective, it's a psychosomatic disorder.
Best,

thanks Jacob Lopez51. You’ve been a huge help. Is Helex prescription-only? Can I ask a primary care physician for it, or do I strictly have to go through a psychiatrist?

vividrider7 said:thanks Jacob Lopez51. You’ve been a huge help. Is Helex prescription-only? Like, can I just ask my family doctor for it, or do I definitely need to see a psychiatrist?

No problem at all. 🙂
It really depends on your specific pharmacy, but you should be able to get a prescription for it...

Jacob Lopez51 said:Don't mention it. 🙂
It really depends on the specific pill, but you should probably get a prescription for it...

Thanks. My doctor finally wrote me the script today. I just took my first dose right before bed, so fingers crossed it actually does something.

Evidence for Dietary Agmatine sulfat Effectiveness in Neuropathies Associated with Painful Small fiber Neuropathy. A Pilot Open-Label Consecutive Case Series Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071502/

I’d like to keep this discussion going, primarily because I have a close family member who constantly complains about a burning, stinging sensation in their feet.
How does one actually go about proving that neuropathy is the underlying cause?