r/smallfiberneuropathy

I've called a few Wellness Clinics and the typical price seems to be around $5,000 to $10,000 on the low end.

Is it a scam? Has anyone tried it with success?

Also wondering if Testosterone Replacement Therapy could help heal inflammation.

Or what about Ivermectin?

(Obviously, this is about Neuropathy)

Anyone has “unexplained” high copper levels that their neurologist just attributed to inflammation?

Hi! So curious for those who have Ivig for small fiber neuropathy - how long did it take for your burning to go away if it ever did? I’ve been on it for 8 months and I’ve noticed an improvement but I still burn :/ I am on so many pain medications and then I see ppl say they got off all their meds.. for reference I have Sfn on every inch of my body. It’s hell on earth :/

I have had no luck and feel like I have seen many others say the same for drugs like gabapentin, pregabalin, cymbalta, amitriptyline etc. I may be extra salty about it because I had chronic migraines as a child and was put on a lot of the same medications with no relief.

Mine is idiopathic and it seems like my doctor thinks these meds are the only option but they have not worked.

To make a long story short. I have Neuropathy/Nerve damage that is not caused by diabetes. I don't exactly know the cause. I'm guessing many years of binge drinking alcohol probably played a role. I also have lower back pain and that's probably a contributing factor.

(Symptoms)

On bad days I have muscle twitching that can start anywhere and last for days or even a week.

Dropping of blood pressure. Orthostatic Hypotension. The bad days are filled with chronic stress due to blood pressure changes. I can tell when my blood pressure drops.

Typical numbness and stinging that usually happens when falling asleep or waking up.. (I've used the peptide ARA 290 and I do believe it has dramatically helped those particular symptoms)

(Remedies)

So here's what I've tried.

(Most effective)

ARA 290 peptide (It's very expensive and I've tried it twice. First time for three weeks. Second time for two weeks. I believe it has helped me significantly.)

Raw Cocao powder (The Cadmium and Lead content is concerning, but I've heard Cocao can boost stem cells so it's a trade off. On bad days Cocoa can be a life saver. It's definitely a mood booster, but I'm probably building up a tolerance because I take it as needed. I'm also concerned about the heavy metals making things worse over the long run or even causing cancer.

Shilajit (I think it helps)

(Things that I take or have taken and I'm not really sure if they help)

R Lipoic Acid

Aceyl L Carnitine

Benfotiamine

B 12

Vitamin D with K 2

Turmeric

NAC (Only tried it a few times because I heard something about a cancer study in mice.

So what have you tried? What is the most effective?

Let's help each other BEAT THIS!

I'M NOT GOING DOWN WITHOUT A FIGHT!!!!!

This heat is killing me. I’m a cat sitter and I’ve been out running around between 4 or so houses all day long the last few days. I’m only outside when walking from my car to the door and vice versa, but even that is enough to make me feel terrible.

I have med induced sfn and pssd (therefore I can't take any antidepressant).

I have cruel head pressure. Makes me insomnia and exhausted..it's torture! Bedridden.

I did an autoimmune brain panel and some markers were high. My docs tell the test us not reliable and refuse to test more antibodies as they tell I am depressed. I am brought in this agony by antidepressants!!

I still try to get ivig and/or rituximab. I wonder if these treatments can at least treat the horrible nerve pain and head pressure???

Damn, I really thought I had reached a plateau.

I’ve spent years trying to do everything right: diet, medication, exercise, supplement, you name it. I never put all my eggs in one basket. I tried to cover every angle.

And then, just when you think you finally have this thing somewhat under control, it hits you out of nowhere.

Boom.

My symptoms are back. Tingling in my hands. Pain in my feet after even mild exertion. That familiar, awful feeling that something is wrong. The whole package.

I’s often not even recognized by doctors, let alone curable. In 2026, the best medicine can often offer is: “Here, take some anti-seizure medication and see if it helps.” Half the battle feels like convincing people that what you're experiencing is real.

As you can probably tell, I’m going through a flare-up right now. My symptoms have suddenly become much worse than they’ve been in a long time.

I’m curious if others here have experienced something similar. Have you ever had a major flare after what felt like years of stability or a plateau? How long did it last for you?

My biggest fear is that this isn’t just a temporary setback but a permanent worsening of my condition.

Would really appreciate hearing your experiences.

Hello everyone, how are you doing?

My biggest problem with small fiber neuropathy (SFN) is related to sleep. My sleep is always poor, but there are days when it gets much worse. On those days, I feel very unwell, mainly due to mental symptoms and dizziness.

Because of this, I am unable to travel. The stress of traveling makes it impossible to maintain my routine. The last time I traveled for a biopsy, I felt very unwell.

Does this happen to you too?

Long time lurker first time poster. It took me about a year to find my cause(seronegative sjogrens). I had a mri of my brain, thoracic spine, cervical spine, and loads of bloodwork. I have biopsy confirmed SFN, and tilt table proven pots.

Once the cause was found it took me about 6 months of being denied and appealing for IVIG. It then took about a month of battling with insurance to send me proof that they received the independent medical review paperwork and to then send me authorization. My first infusion is in a couple weeks.

TLDR - don’t give up on finding your cause and advocating for treatment.

Also would love to hear tips regarding IVIG or your experiences with it. Thanks for reading.

I've had this sensation come and go for years, feels like hot needles are being pierced through my fingernails. Generally it lasts a day or two and goes away. This episode has been happening for 3 weeks. I've tried all the usual pharmaceutical suspects and nothing is touching it-waiting on my neuro but that's not for 2 more weeks. Anyone have any off the walls ideas...beyond just walking around with my left hand in a bucket of ice all day?

My symptoms started immediately after the COVID vaccine (late 2020) which presented with head to toe neuropathy, extreme vertigo, and tachycardia. I was in the hospital and discharged with possible multiple sclerosis (due to brain lesions on MRI) and POTS. My symptoms improved in a few months.

I have been following a neurologist for years since. They ruled out Multiple sclerosis due to my annual MRIs being unchanged and never light up with contrast (which would signal an active flare). They say the lesions could be due to headaches.

I had a skin punch biopsy which confirmed SFN. My symptoms became quite mild during 2 pregnancies but came back with a vengeance after I stopped breastfeeding.

I pursued autoimmune testing due to the thought that maybe my pregnancies were suppressing my immune system which would explain why my symptoms got better. My blood work was always normal except for a few inflammation labs which they thought was due to the postpartum period.

I ended up asking for a rheumatologist referral because my wrists and ankles were becoming stiff. I had an Avise panel done which confirmed rheumatoid arthritis. I have tried 2 mediations for the RA but both make my neuropathy worse.

My day to day symptoms include constant numbness in hands and feet, Raynaud's phenomenon in my hands and feet (assuming due to SFN making my small vessels constrict too much), stiff ankles and wrists in AM, vertigo, IBS, and borderline POTS (dx with tilt table).

I will admit that I had some IBS and POTS symptoms BEFORE I got the vaccine that started everything, which also made me want to pursue autoimmune testing to see if it just made something I had already had flare up. Never had any other symptoms until after.

Sorry, this is much longer than I thought it would be lol. So I guess I'm asking if anyone can relate to this, any other recommendations for me to try, AND has anyone found anything to help with the constant numbness in hands and feet? I know that's more indicative of permanent damage, but I'm down to try some new things.

I am currently taking

alpha lipoic acid 600mg
Turmeric with black pepper 1gm
Vitamin d 5000iu
B complex

And hoping a new med for RA that won't make my symptoms worse. (Tried plaquenil and arava)

See above. I responded to steroids seemingly at first but then they seemed to stop working. Do I still have hope that anything else would work to actually repair the nerves? We think it’s autoimmune mainly due to onset after a flulike virus, autoimmune hair loss,relapse remitting, young female and ruling everything else out.

Has anyone been through the process of testing, diagnosis, treatment in Oregon? I have searched for Oregon and Portland and OHSU in this group and haven't found any information about testing experiences or recommendations in my area.

My PCP is new to small fiber neuropathy, wants to help and is willing to refer for testing.

The two rheumatologists and two neurologists I have seen have been stumped by my neurological symptoms, but one neurologist mentioned the possibility of small fiber neuropathy and left it at that... it was enough to set me on a path of research though, so here I am.

I know I can ask any dermatologist to do the skin biopsy, but where should the samples be sent? Out of state to a speciality lab, or locally to OHSU? I called a Providence oral oncology clinic that advertises biopsy pathology/testing, but the lady who answered the phone had never heard of minor salivary gland biopsy, but also didn't think there were other oral surgeons within Providence who did what I was asking about.

OHSU might be the only medical system in Portland that does QSART sweat testing, and I am trying to decide how I get access to that, or if I should be flying to Stanford for TST at their dysautonomia clinic.

Any advice would be appreciated. I am concerned about cost of out of state testing, but also concerned about false negative testing and poor healing from someone inexperienced.

How do you tell the difference? I feel like I have muscle weakness. My joints feel heavier. Moving my body feels heavier. I also have joint pain. But I can’t tell if it’s actual structural muscle weakness.

Hi ! For context, i have hEDS, spondylitis and MCAS, so i know i'm at risk for developping SFN, and thus i might be interpreting my symptoms in a biased way.
I've been wondering lately if i might be developping SFN because i've been feeling localised numbness on the tip and side of my big toes and pinky toes, and maybe some mild numbness on the underside of my feet.
Sometimes i can feel some heat randomly going through my feet, it feels like a stream of water. it doesn't burn per say, it's just heat

i already have some neuropathic pain, especially in my elbow (my ulnar nerves get irritated easily), and i frequently experience tingling in my hands, arms and legs, but i usually attribute it to like mechanical reasons i guess. like my arms are tingling because my backpack is too heavy and it's compressing my nerves in my shoulders. or my legs are tingling because i'm sat at the wrong angle. I also have POTS so i definitely think it plays into this.
the pain in my elbows got really bad at some point, so i got an MRI done to check if the nerve wasn't being compressed (it wasn't) and then i went to a neurologist who tested the large fibers with electrical impulses, but he found nothing relevant either.

i also regularly experience some twitching in my face (usually near the corner of my mouth, around my eyelid, or right under my eye).
i also have digestive issues (but, again, i have hEDS so..) and sometimes experience stabbing or electric shock sensations that come out of nowhere.
and i'm sure i'm forgetting other relevant symptoms...

i honestly don't know a lot about SFN and the websites i've visited don't really explain in detail how the symptoms start and evolve. and i have several conditions that can affect my nerves and i've been dismissing my symptoms because of that; but what if it's not my other conditions ?

Anyways, does this sound like it could be SFN to you ? Could you tell me how it started for you so that i can know what to look out for and see if i relate to anyone ?

Sorry for any grammatical mistakes, English is not my first language ?

I heard some people talking about a discord server, if there is, could someone DM me an invite link, much appreciated

So does anyone know if there is a medicine that works like lyrica that is not gabapentin?

Lyrica 75mg twice a day has made me gain almost 20 lbs and it's affecting me mentally, but also the pain is too. Some days it's better than others though.

I am worried about the long term use of gabapentin and dementia thats why I originally got off of it....

But honestly you would think that all drugs that work the same and on nervous system and brain will do the same thing..🤔 but i dont know

I just really want to get off lyrica.

I am also currently on cymbalta 60mg and LDN 5mg.

Thank you!

I (30 F) have been experiencing waxing and waning nerve symptoms since Dec. 2022. I have been to multiple neurologists who have for the most part been useless. The original two who I saw immediately dismissed SFN as a diagnosis. I also want to mention this started after taking two back to back antibiotics, but neither are known to cause neuropathy.

So far, I have had two normal EMGs, multiple blood panels, and MRI w/ contrast. I have also been battling with SIBO and nutritional deficiencies which I was told was causing my symptoms. I had low B12, folate deficiency, and low ferritin. I got iron infusions and started B12 injections and folate supplements. I haven't taken the antibiotics for SIBO yet and mainly managing it with lifestyle because I'm scared more antibiotics will make me worse.

For about the past year, I had waxing and waning symptoms but have been pretty functional. I had the occasional tingly sensation and annoyances but not pain. The B12 shots also seemed to be helping. I saw another neurologist (Neurologist #1) who said I can do a biopsy if I want to but because my symptoms are mostly in my arms and face, they might not yield positive results. I decided to continue B12 treatment and hold off on testing for now. She did seem to think the B12 was driving my symptoms.

Well, just last week, I started getting an extremely painful burning sensation in my arm. It was super sensitive to the touch and spread to my chest and other arm. It has calmed down a bit but is still there. I have never experienced true "burning" flare like this--feels like a horrible sunburn but won't let up. I scheduled the biopsy with Neurologist #1 which isn't until August. In the meantime, I scheduled an appointment with Neurologist #2 (who I had seen previously as well) who basically said, "Based on your symptom progression, you definitely have it. You treated the B12 and it came back, so therefore it's idiopathic. Take some cymbalta for nerve pain treatment." I obviously left in tears and feel extremely discouraged because she said a biopsy wouldn't even pick it up since my symptoms are in my arms. I am holding out until biopsy from Neurologist #1, but can this even be diagnosed like this? I was fine for a year.

I also can't help but jump to worst case scenario that my life is over and these symptoms are permanent. I also have Hashimotos, so there could be an autoimmune component but nothing has shown up on bloodwork. I admit that reading the stories of how debilitating this disease is on Reddit is making me feel worse while I wait for the testing. I don't know what to do anymore but am basically looking for insight or advice. I don't want to just believe it's idiopathic because the B12 stopped working.