r/smallfiberneuropathy

Just back from neurologist visit. Didn't have high hopes but once again, these Drs just make me mad. I'll like to cross-check her claims with everyone's experience and knowledge. She said the below

- pins and needles, numbness and cold feeling is less likely to correspond to SFN, which according to her presents more as burning and pain.
- SFN can be traced to a cause in only 20% of cases, the rest is idiopathic.
- swelling and redness of toes is not SFN.

what do you think/know? Thank you.

my mind seriously feels like it’s at a breaking point.

for many personal reasons, it has been desperately important to me to have medical proof from a definitive test that my pain was real. it took 4 yrs but when i got my biopsy back positive for sfn i was so, so relieved

then the dr hits me with the well, this is really just a symptom of something else - but since you don’t have diabetes, you’ll probably never find out what caused/is causing it, the only thing you can hope for is that it doesn’t progress further, here’s some useless cymbalta

i couldnt accept that. i NEED to know why this is happening. i CANT LET IT GET WORSE. my life is already mulched up into fucking bits of what it once was. i’m barely a shred of the person i was. i have to know what’s going on. i have to be able to tell people something so they understand

waited 9months to see the best neurologist for sfn i could find in my area, highly recommended, he is very kind and i can feel him putting genuine thought and effort into going over my symptoms and thinking of ideas. did a bunch of brainstorming in front of me on a clipboard. it may sound like nothing but you know how it is, i got so desperately excited because this dr was actually paying attention and giving a shit, i was like omg he’s gonna figure this out for sure. looks up at me finally and says m’am none of this really makes sense, the symptoms and severity of the damage don’t really match up with the timeline and you not having any other major medical episodes or family history of xyz

auhahaha okay. well. that’s concerning. and confusing.
he thinks quite confidently maybe i have some random genetic muscle thing and have been having a slow progression all my life with a sudden ramp up. i feel hope. he prescribes 2 meds. i feel hopier than hope. (disclaimer i think you guys understand, not hopeful to be sick but just that i would have an answer type of hope)

get home, the high leaves soon and i realize i’ve really accomplished nothing again. one med was lyrica which is just more potentially life ruining shit like cumbalta. one is journvax which i was interested to try, but it would have made my birth control stop working, and the pharmacist didn’t catch it so that’s awesome. then the blood tests come back all negative for the things he thought of. it’s the same as every single panel i’ve done the past 5 years; completely normal except high CRP and high eosinophils which both mean nothing apparently, i got basically ridiculed the last time a dr sent me to try rheumatology with the high crp and mcv/mch

so yeah the past 3 days i’ve just been in a super dark place. i’m so angry. i’m at the end of my rope. how many more years will it be of this painfully fucking slow chess game. one appointment. 6-9 months between. tiny flecks of interest here and there from drs. nothing ever sticks. this dr was nice at least, so i’ll keep going and praying he doesn’t just shuttle me off to another speciality at the next appt…maybe there are more things he can test for

mostly i feel alone and like i’m still making this all up. it’s my fault my behavior has changed. it’s my fault i can’t keep up with new friendships. it’s my fault i’m so boring now. it’s my fault i feel like i can’t physically handle a 2nd job anymore. it’s my fault i’m too tired to go back to school. it’s my fault my spouse will no doubt be ready to leave me in another year or two. it’s my brain making this up when i’m just laid there having pain breathing in and out after doing some laundry. in my hardest moments i feel my mind slipping and feel that i’ve genuinely landed myself in purgatory. that’s how utterly stuck i feel.

Hi everyone!

I was diagnosed with SFN last October after having a QSART test. I also had a tilt table test, which was my second in the last decade, but both were negative.

Anyway, I saw an autonomic neurologist in March and he ordered me a bunch of tests. I had previously had a blood test for Sjogren’s, but it came back negative. He told me the blood tests are not very good. So I had the biopsy, but I scored 0; yet if I understand the results correctly I do have some sort of chronic inflammation. I have all of the symptoms of Sjogren’s and had a relative with it. But everything keeps coming back negative or inconclusive. Yesterday I had the final series of tests he ordered, which included the Schirmer test. I scored a 5 in one eye and a 9 in the other. The eye doctor said he thought the dryness was neuropathic in origin.

I follow up with the autonomic neurologist at the end of June, so I will have to see what he says. But I feel sort of confused and frustrated at the moment. Has anyone else not been able to find the cause of their SFN?

Hi everyone, I'm a M23 and pretty active with sport. Two weeks ago, I got really sick and my knees started burning all of a sudden which made me think, it is either seasonal change or its just because I am sick. The burning sensation on my both knees were insane that I have started putting some ice on it and when I was sweating due to sickness, and the burning pain was going away. I went to doctor to rule a blood test to find out if it is related to inflimation, however, it came back all negative and all the blood work including B12, Ferritin and ect were normal except vitamin D was very low 49 ( which should be between 75-250 if I remember correctly). Just that day, my elbows are flared up and had some sore body.

However, now its been a week, I do sweat time to time since its 27 degree but I dont get chills or whole sore body and still make it to gym twice a week. No eye redness, no sore throat, no burning feeling in my back or feet or hands just knees and elbows, it just plays around sometimes during the day its elbows and sometimes its knees. I was hoping for re-active arthiris but looks like it is not since there is not visible inflimation. I feel pretty energetic when I wake up, I am able to function as before but after fee hours burning sensation hits. Since I read some threads here, did it started like this for you guys as well? Can it be nerve issues? I don't have tingling or stabbing symptoms except when I take stairs it is relatively painful. I would appreciate your input and what to ask my doctor on Thursday. I am a bit confused:;(( Thank you in advance!!!

I'm getting horrible symptoms every day and just feel like I can't go on anymore. I feel like I'm getting worse each day. I feel hopeless. The numbness and dysautonomia get worse daily. I have numbness from head to toe and everything in between. I also have internal numbness and autonomic dysfunction. My Neurologist hasn't found anything to help me and this just keeps getting worse.

I developed all these issues after taking an antibiotic and B6 supplement 3 years ago. Since then, my life has been terrible. I've been basically bedbound since October 2025. Also, I have other conditions that developed along with this...MCAS, Dysautonomia, and Malnutrition/FTT. And I have hEDS, but that never caused issues until I took that antibiotic.

I feel terrible, every day is filled with flares and pain. Today all I did was try and get dressed. I stood up maybe 4 minutes and also did some organizing while sitting in bed (maybe 5 minutes). That was all it took for me to get sick. I felt dizzy, like I have no blood in my head, also had abdominal cramping, and lips got extremely dry, and my chest felt weird. Heart rate and oxygen were normal.

So, I went to lie down and raise my legs. That just made me feel much worse. I sipped on my electrolytes and drank almost the whole liter. Then of course I had to urinate. After I did that I honestly thought I would die. I've gotten vasovagal responses before, they started in November 2025. This just felt so much worse.

I don't know where to go from here or who to turn to. My Neurologist is supposed to be excellent, but I mentioned these things to him and he just shrugged me off. I literally can't stand up for more than a few minutes. This is all unbearable.

I'm not sure if any of your are Christian, but I try to have faith in God. I understand that things are permitted for our own eventual good and growth, but this is too much to bear. If it's not the MCAS reactions, it's the constant autonomic flares and worsening numbness. I feel like it's not at all possible to live this way. Each day I'm just trying to survive.

Guys, I’m posting here because I feel like I’ve reached a dead end with a health problem that still feels unresolved and has completely changed my life over the last few years. I would genuinely appreciate if anyone with similar experiences reads this and replies.

Male, former competitive cyclist, trying to understand a chronic condition that gradually developed after a difficult period in late 2022.

In October 2022, I had a severe allergic reaction/shock and COVID around the same time. Later on, there was suspicion of EBV/mononucleosis as well, although we are not 100% sure because I only did the EBV blood tests in June 2023, where antibodies were elevated.

Because I was still competing seriously at the time, I probably made things worse by continuing:

- intense cycling training

- races

- altitude training camps

- overtraining in general

To this day, I still feel unable to function normally physically.

I cannot tolerate exercise normally anymore, and even walking or standing can trigger symptoms:

- standing for some time causes burning in my legs

- walking can also trigger burning sensations

- physical effort feels abnormal compared to before

One of the worst symptoms I had until around 1.5 years ago (which has improved somewhat but I still feel is still there in the background) was extreme general fatigue. I used to wake up in the morning feeling like I had not slept at all during the night. The exhaustion was overwhelming.

Main symptoms:

1. General fatigue / unrefreshing sleep
2. Burning sensation in legs (especially quadriceps)
3. Burning sensation in arms/hands
4. Muscles burn very quickly with effort (for example wall sit burns almost immediately)
5. Recurrent “sore/bruised” feeling in the same spots in both legs and upper hamstrings
6. Muscle tightness/pain without obvious exercise

Eye symptoms:

- Severe dry eye symptoms with pain and very red eyes

- Eye pain improved slightly with treatment, but redness still fluctuates a lot

Important:

- I am not progressively losing strength

- EMG was mostly normal previously

- Autoimmune blood tests (ANA, SSA, SSB etc.) were reportedly negative

- Doctors are currently investigating possible small fiber neuropathy / dysautonomia

Mentally, the fluctuations and uncertainty have been extremely difficult, and I would really appreciate hearing from people with similar experiences.

Why does nerve damage exist why why why why why

VENT: I have early signs of neuroSjögrens (some elevated early antibodies) and started getting such painful, non-length dependent SFN symptoms after a big flare in July.

Ive been facing a lot of dismissal because of course all of the basic MRIs EMG/NCS are normal. I got the SFN biopsy and it showed small axonal swellings, which I know isn’t diagnostic but in the context of my symptoms shows that SOMETHING is going on. I brought this up to the jerk neuromuscular Dr who just wanted to get rid of me, and he said I was “over reading.” I’m like “um no I want to catch this early.”

I never planned to seek continued care from this Dr, but he has told everyone that the test was “normal” without this caveat (to his defense it is normal in a diagnostic sense), leading the Neuro team to be like “nothing more to do here” - nobody wanting to connect dots. I just had to call patient relations and fight to not get abandoned.

🤬

Hello,

I'm 62 years old, and I'm taking Lyrica 200mg 3x a day for a total of 600. I switched over from Gabapentin, when I developed a tolerance at the maximum dose after a few years.

Until recently, it's been very good at pain management, although I discovered to my surprise, that if I happened to forget a dose, vomiting, intense itching, skin crawling sensations, etc. would develop, and it would take time for my nerves to get back to "normal."

I don't recall my doctors' warning about a physical dependence, and I'd gotten the impression from what I had read that while you have to taper off, no biggie. [Meanwhile, I was the type of person who would get very nervous when I was prescribed an opiate for, for example, recovery after dental surgery, because I "didn't want to get addicted."]

Both neurologists I have had have cheerfully upped me to my next dose or switched me to Lyrica (because you need less to get the same effect). And stupidly, when I missed a dose, I would take twice as much. I didn't realize I shouldn't do that. I am so angry at myself for not reading more and questioning more.

I am at my maximuum. My feet have been really bothering me sometimes of late, right now wrapped in Lidocaine patches, which are also getting less effective, and I am afraid.

-Where do I go from here? I took Amitriptyline with Lyrica once, and slept the *entire* day, and then was in a fog. What is left for me if I have developed a dependence to this medicine? [I'm also on a GLP-1, a statin, and a few other drugs not related to pain relief or nerves.]

-What if a shortage develops of this medicine, or if my insurance decides to no longer cover it?

-I have always had a great memory. I love reading, do NYT crossword puzzles, & learning new things. I now will have trouble remembering some common word a few times a day. I don't know how much is age, how much is drugs, how much is lack of sleep...or is it the beginnings of dementia?

I am afraid.

But first I wanted to ask the general public who struggling with this. I am at a loss at what is wrong with me and what is going on, no provider has been a help to me.

But over the past 7ish months I experience INTERNAL itching/burning (and also leads to abdominal pain) all throughout my body, mostly after eating and sometimes it can be localized to my gut alone. It doesn’t matter what I eat.

For those of you who might suggest it’s MCAS, I am actively being treated for it by using mast cell stabilizers.. HOWEVER, they are NOT helping with this internal itching/burning I get after eating. (I’m on cromolyn and ketotifen, allegra, pepcid.. none are targeting this very well).

So what is it that I am experiencing. Please help it’s driving me crazy and causing me so much stress.

Wanted to do this properly so I gave each one a real rotation before saying anything. Here's what I found:

Viasox: the toe construction is genuinely good and the patterns are a nice bonus if you wear the same socks every day and want some variety. My main issue is durability, they thinned out faster than expected and the sole cushioning faded. Good sock early on, less impressive at month two.

Bombas: the most premium feel on first wear. Comfortable, holds shape well. The band is the issue. It's not aggressive elastic but for me it still marked my ankles after a full day. Fine for people without serious circulation concerns, wrong sock if restriction is your actual problem.

diabetic sock club: The non-binding top is genuinely different, not just softer elastic but a different design approach. Made in the USA which shows in the consistency. Not the cheapest but it's the one I reordered.

None of them are perfect and your mileage will vary depending on what exactly you're dealing with. If the band is your priority concern, that's where the difference is most clear.

I was diagnosed with SFN via biopsy last summer-- I've had a myriad of issues before and since. Far and above, my most severe symptom is significant muscle soreness and muscle fatigue. Something as simple as walking up steps and raising my arms for a few seconds causes severe, near-instant muscle burnout. I can push/pull/lift with near-normal strength, but it's painful to do so and again, my muscles will burn and fatigue very quickly.

So, I posted the following in the copper deficiency subreddit about a month ago and got some helpful feedback, so I thought I'd re-post it here in hopes of gaining some additional information/tips:

So

First time poster here— I’d love some insight or advice from other folks in a similar position to myself.

I’ve had questionable symptoms for a few years: significant muscle burnout in arms and legs— particularly with even minor exertion (reaching/squatting), tingling/numbness in hands and feet, persistent sense of GI fullness, etc.

In summer 2023, I started experiencing significant GI symptoms— fullness, lack of appetite, abdominal pain, etc. Eventually, I tested positive for methane SIBO the following year.

However, by spring 2024, shortly after having COVID for the first time, I began having an issue with my nose (still ongoing): non-allergic rhinitis, along with a constant, unrelenting sense of pressure around the bridge of my nose. I breathe fine— normal facial CT and nasal endoscopy.

By around December of 2024, I started experiencing more symptoms: I struggled to track moving objects on a screen, along with generally worsening vision. I also started having problems with my equilibrium. I wouldn’t describe it as vertigo, but rather disequilibrium— almost like trying to stand still on a moving boat.

Around spring of 2025, my symptoms got much worse: my balance was very poor, visual tracking had diminished further, and my body felt so physically weak that I would often have to sit in the shower, lean against a wall, etc. I also started experiencing a lot of PVCs and elevated heart rate around this time.

Finally, by April of 2025, my neurologist found my copper deficiency. He advised I start copper glycinate 3mg 2x a day. Admittedly, he had not seen a patient with this problem prior to me, but I’m sure you all have heard that many times.

Meanwhile, my GI symptoms were as bad as they’d ever been. After doing ABX twice for SIBO, I see an integrative health provider. I do a Vibrant gut zoomer stool test and find I either have early stage celiac or a notable gluten sensitivity. I go GF immediately after getting this result and have been ever since.

After 2 months, my symptoms worsened further, now including substantial muscle soreness— almost like I was beaten in my sleep. I started to question if I had MS (prevalent along with Lupus in my family). I also start developing aura migraines— occurring every 1-2 weeks.

Around this time, I also undergo an EMG and SFN biopsy— the former is normal, but the latter comes back positive.

After being told there’s almost no chance I have MS, my neurologist retests my copper— it’s, much to his surprise, even lower. At this point, we decide to start infusions (4mg copper chloride for 4 days in a row). Frustratingly, the number barely moves.

By the end of the week, we schedule to have them done 3x a week. After 2 months of this schedule, I yet again make no progress. At this point, I learn what ceruloplasmin is and we test that too— it’s also low.

It’s now September 2025, and I decide to also implement 3mg copper glycinate 3x a day on non-infusion days, and on infusion days, take 1 3mg pill.

My copper jumps from 48-51 to 57 mcg/dl. However, my GI issues persist, so I go on SIBO antimicrobials via the integrative health provider’s plan.

Subsequently, my copper and ceruloplasmin tank— I suspected this would happen, but irritating nonetheless.

During this time (Oct-Dec 2025), I meet a hepatologist for the first time, who is the only doctor I’ve met thus far who knows anything about copper disorders. He’s convinced I almost certainly have a genetic disorder.

After the appointment, I do a 24HR copper urine and metabolic copper genetic panel to test for Wilson’s, along with a variation of ATP7A, etc. The copper urine was normal, and after a month, I get the genetic results back: normal.

It’s now January 2026 and I’m continuing with the infusions (had been since July 2025). My levels slowly rise all the way to 60 mcg/dl copper and 0.19 g/L ceruloplasmin. Upon seeing this, I scale infusions back to once a week, thinking I’m progressing nicely.

February comes around and my hepatologist refers me to the genetics department. I meet with them and speak about my issues at length for a couple hours. They decide I need whole genome sequencing. At the end of the appointment, they perform the test.

A month passes and I get the results back: normal— everything completely normal.

This brings me to current day: I’ve done about 80~ infusions since July 2025, my copper fell back down to 51 mcg/dl, and my hepatologist has sent a referral letter to the NIH. I’m now waiting to hear back from them on if I’ll be accepted.

Some odds and ends: normal endoscopy/colonoscopy in June 2025, my vitamin A, B1 (Thiamine), B2 (Riboflavin), B6 (Pyridoxine), B12/folate, and D are all normal. My zinc is low/normal at around 58 mcg/dl. My molybdenum and manganese are also normal. My iron/ferritin panel came back normal as well. I don’t consume anything with notable phytic acid like oats.

Apologies for the very, very long post, but like many of you, I’ve tried nearly everything that I can think of, and as most of you have come to find, most doctors overwhelmingly know nothing about copper— especially true deficiencies. I’m sure I missed something, but this covers most of the story up to this point.

Any thoughts?

Edit: I forgot to mention: I had my gallbladder removed in 2017, had pretty severe erosive gastritis for 2-3 years afterwards. Oddly, I didn’t have gallstones— the gallbladder was simply inflamed. I had a fairly decent diet prior and my weight was at a healthy point beforehand. I dropped about 30 lbs afterwards and I’ve been around 150-160 ever since (6ft, male). I wanted to bring this up as my integrative health provider mentioned the possibly of some type of bile loss/leak causing my copper deficiency.

I also forgot to include: I lost a considerable amount of weight from May-June 2025 (prior to going GF). I went from 156>144 lbs in about a month— I’ve since regained the weight.

Current levels for various vitamins/minerals:

Vitamin A

Normal value: 18.9 - 57.3 ug/dL

Value: 37.3 ug/dL

Vitamin B1, Whole Blood

Normal value: 66.5 - 200.0 nmol/L

Value: 111.2 nmol/L

Vitamin B2, Whole Blood

Normal value: 137 - 370 ug/L

Value: 191 ug/L

Vitamin B6

Normal value: 3.4 - 65.2 ug/L

Value: 30.1 ug/L

Deficiency: <3.4

Marginal: 3.4 - 5.1

Adequate: >5.1

Vitamin B-12

Normal range: 232 - 1,245 pg/mL

Value: 606 pg/mL

Folate

Normal value: >3.0 ng/mL

Value: >20.0 ng/mL

TIBC

Normal range: 250 - 450 ug/dL

Value: 284 ug/dL

UIBC

Normal range: 111 - 343 ug/dL

Value: 143 ug/dL

Iron

Normal range: 38 - 169 ug/dL

Value: 141 ug/dL

Iron Saturation

Normal range: 15 - 55 %

Value: 50%

Ferritin

Normal range: 30 - 400 ng/mL

Value: 165 ng/dL

Zinc, Plasma Or Serum

Normal value: 55 - 110 mcg/dL

Value: 58 mcg/dL

Copper

Normal value: 70 - 140 mcg/dL

Value: 51 mcg/dL

Ceruloplasmin

Normal range: 0.20 - 0.60 g/L

Value: 0.19 g/L