r/smallfiberneuropathy

Hi, I'm checking in with those of you who know more than I do about the waiting game. Is it normal to wait six weeks or more for results? I was told it would be about a month so of course my brain starts going into overdrive. I appreciate any responses/ shared experiences.

I’m a 48M and was biopsy confirmed sfn about 18 months ago

Right around the time I started to feel neuropathy setting in, my legs started to go numb when sitting in a firm chair.

For reference, about 5 years ago I could no longer wear laced shoes or my feet would become painful.

Now, I can’t side sleep on my arm or it goes terribly numb at night at wakes me up. Both sides do it.

My neurologist says “maybe it’s carpel tunnel” which makes zero sense.

Has anyone else had these types of issues along with their sfn?

It also blew up my sleep cycle (not from pain or discomfort, I just can’t relax without meds anymore). My dr is also in denial there is a connection to sleep.

I know my body and know that all of this is connected to whatever resulted in the sfn.

Hallo Ihr lieben starken Menschen, habe mich viel belesen zu PEA. Jemand hier, der es nimmt? Hat es Euch geholfen bzw hilft es?

Hi everyone,
I’m a 29-year-old man, and I’m trying to understand whether anyone has experienced something similar to what I’ve been going through.
About two years ago, I suddenly developed widespread neurological/sensory symptoms. The most striking symptom was severe allodynia: even very light stimulation of my skin could feel painful or extremely unpleasant. In particular, I became very sensitive to body hair moving against my skin, as well as to clothes and bedsheets touching me.
I also experienced:
burning sensations in different parts of my body;
tingling and pins-and-needles;
fasciculations;
fatigue and rapid fatigability;
joint/musculoskeletal pain;
abnormal sensations in my hands and feet;
a persistent feeling in my left foot similar to numbness or “walking on cotton.”
At the time I underwent several investigations, including brain/spinal MRI and EMG, as well as blood tests for autoimmune diseases. Nothing clearly explained the symptoms. My EMG was essentially normal and the imaging was normal. I was also told that I had spasmophilia.
What is particularly strange about my case is what happened afterwards.
All of the symptoms gradually disappeared.
I eventually went into a complete remission that lasted approximately 14 months. During that entire period I had essentially no neurological symptoms at all. I was living completely normally, going to the gym, playing soccer, spending time in the sun, working, and I stopped thinking about the illness altogether.
Then the symptoms came back.
The relapse initially looked very similar to the first episode, with widespread allodynia, burning, tingling and abnormal sensations in my feet and hands. Again, there was no clear weakness.
What worries me is how quickly everything seemed to come back and intensify. After having been completely symptom-free for more than a year, I felt as though I went from normal to having widespread symptoms again within a relatively short period of time.
More recently I have also developed significant gastrointestinal symptoms, including:
severe bloating, especially in the upper abdomen;
feeling extremely full after relatively small amounts of food;
nausea;
occasional vomiting;
epigastric pain/burning;
frequent belching and acid reflux;
sometimes even drinking water seems to cause pressure/bloating and a sensation of acid coming back up;
constipation/changes in bowel habits.
I have noticed that the gastrointestinal symptoms can fluctuate considerably as well.
I am wondering whether there could be a connection between the sensory symptoms and the gastrointestinal problems, for example through autonomic involvement.
I have read about small fiber neuropathy (SFN) and possible autonomic involvement, and I wonder whether this could explain some of the symptoms. However, I have never had a confirmed diagnosis of SFN.
One thing that confuses me is the long complete remission. If this were an autoimmune small fiber neuropathy, could symptoms disappear completely for more than a year and then return quite abruptly? Or would that pattern make other possibilities more likely, such as functional sensory dysfunction, central sensitization, autonomic dysfunction, or another fluctuating condition?
I am also currently being evaluated for the possibility of gastroparesis because of the early satiety, bloating, nausea and vomiting. However, I understand that similar symptoms can occur with functional dyspepsia or altered gastric accommodation even when gastric emptying is normal.
Has anyone here had a similar course?
Especially:
Did you have widespread allodynia/burning/tingling?
Did you have a completely normal period lasting many months or even years?
Did the symptoms then return quite abruptly?
Were you eventually diagnosed with SFN or an autoimmune/autonomic disorder?
Did you have gastrointestinal symptoms as well?
If you had a gastric emptying study, was it actually abnormal, or was it normal despite severe nausea, early satiety and bloating?
I’m particularly interested in hearing from people who had significant GI symptoms but normal gastric emptying, because I’m trying to understand whether my symptoms necessarily point toward gastroparesis.
I’m not looking for a diagnosis from the forum — I’m mainly interested in comparing experiences and understanding whether this kind of relapsing/remitting pattern has happened to other people.
Thanks in advance to anyone willing to share their experience.

I’m curious how people here manage work while dealing with SFN.

Are you able to work normally, or have your symptoms made it difficult or impossible to keep a job? Do you work full-time, part-time, remotely, or not at all? And if you’re not working, how do you manage financially - disability, savings, help from family, etc.?

I work from home remotely. Sometimes it’s pretty hard to stay focused and keep working when the symptoms are bad, but I usually just keep going through them. Sometimes I take breaks, walk away from the computer for a while, or lie down on my bed until I feel a bit better, then go back to work.

I’d be interested to hear what work looks like for other people with SFN and how you’ve adapted to it.

Just started the peptide ARA 290 and will be running it for a full month this time. Currently on day 4. Twitching has pretty much stopped. Just very tiny little twiches once in a while. Like it's dwindling down. Already feeling much better all around. Blood pressure stabilized. Energy has increased. Zero side effects.

Do your homework on ARA 290. Last year it was truly a miracle for me. Now I'm finally starting to feel hopeful about the future again.

(Not medical advice, just do your homework)

After I'm done with that, I'm going to try Enclomiphene for testosterone support because the inflammation and stress from the neuropathy negatively affected my hormone production. (My theory)

I actually think the ARA 290 is starting to have a positive impact there as well, because when the stress and inflammation goes away, everything seems to fall in line.

So I might not even need the Enclomiphene. I guess I'll see how I feel in a month.

For those of you with idiopathic SFN, has anyone managed to reduce the burning symptoms by something like 85–90% or more?

I’m also curious if anyone has had longer periods — a month or more — where the burning was almost completely gone or barely noticeable.

If so, what helped you get to that point?

I’m not asking for medical advice, just interested in hearing people’s personal experiences and whether this level of symptom control is actually achievable for some people.

I was diagnosed with sfn in 2020 and have had a progression of numbness since but the past few months it has really escalated. My genitals and face are the most numb, and my throat is starting to lose sensation. How do people function with this level of numbness? I'm worried I will not know when to have a bowel movement or to feel to swallow. Oddly, my feet are the least affected so I am able to walk fine.

I have tried IVIG without success and prednisone tends to flare my symptoms. My blood work is normal with the exception of low ferritin but I cannot get an iron infusion as my neurologist said that could further flare my neuropathy (I have had a previous allergic reaction) My neurologist is aware and says nothing can be done, so at this point I'm just trying to figure out how I'm going to function. Are folks able to function while being very numb? Anxiety definitely makes things escalate so I'm trying very hard to stay calm while this is happening though it is very difficult.

Hello folks. I’ve suffered a rapid onset of symptoms followed by all the tests and imaging, culminating in a diagnosis of small fiber neuropathy in my feet and legs due to a delicious buffet of chemotherapy. I fought my way through the cancer only to be palsied and made a fall risk for, apparently, the rest of my life. I’ve ‘enjoyed’ reading about everyone’s adventures here and wanted to ask for any experience, strength or hope regarding employment. I am currently a high school culinary arts instructor which requires me to be on my feet and moving daily. We’ve just begun our year and I’m already struggling with the foundational class work prior to entering the kitchen, and I’m not confident I’ll be able to do the job long term. My admin is supportive and I’m in the process filing ADA paperwork, but at the end of the day, I can’t run a kitchen full of youngsters from a chair. Like most, my income and employer sponsored health insurance are a necessary shield against financial collapse. Coming from a kitchen/education background gives me lots of transferable skills but finding a compatible job without a four year degree, especially in this market, seems unlikely. I’m a few years away from 65, and could take Social Security, but Medicare wouldn’t kick in until I hit that age. I’ll assume that I have too many resources to qualify for Medicaid. So has anyone dealt with this sort of thing? Any ideas for a way forward? I could get insurance through my spouse, that’s one plus, but the money would still be lost. I could start my own business as a ServSafe instructor/proctor, but there would be a long ramp up to hit anything like my current income level. Oh, and let me say it first, “Welcome to America “. Thanks for reading my post.

I hope someone can help me.. I have neurological symptoms such as SFN, POTS, Raynauds including almost no saliva. I have had multiple blood panels done and they’re all negative including SSA ANA SSB. My lip biopsy and ultra sound were both negative for sjogrens.

I have no inflammatory markers at all and the only abnormal finding I have found is low neutrophils and low wbc which is not common in seronegative sjogrens. I also took an early sjogrens panel with one positive marker and have had 3 rheums tell me that the test is not accurate. Where should I even go from here ? Is this even sjogrens at this point ?

I have sfn. Occasionally, when there's a light/moderate touch on my skin, say, somebody touching my arm to get my attention, I'll feel it twice.

I'll feel it in my arm like normal, but I'll also feel a tingling sensation on a different part of my skin. I might feel it in my calf, thigh, ribs, etc. Mostly it's in my legs, which makes sense because that's where a lot of my other sfn symptoms happen.

Does anyone else experience this? Does anyone know if there's a name for it or any research on it?

Hey! Anyone with similar pain? It’s this wiiiild burning throbbing ache that roams my body, also buzzing and stinging. It’s like acid eating my tissues. It will happen for example in my hips, 2 hours later it’s gone there and it moves to my knees, then a few hours later it’s in my upper back or elbows and so on. Basically the pain attacks, torments me and then it just disappears like it never happened only to hit another place. The intensity varies from mild to horrific. It’s exceptionally bad now since I have a huge flare after a viral stomach bug. Does anyone have a similar migratory pattern?

Hi I am diagnosed with hEDS, MCAS, cauda equina syndrome and fibro. I’ve had essential tremor for years as well as severe restless legs. I also get an internal vibration? That other people can feel. It gets worse when I’m exhausted or have done too much or have hurt myself or have an allergic reaction. Suddenly my neurologist wants to say it’s FND when looking it up it could come from any one of the above conditions especially as I have CCI and severe nerve damage from the cauda equina. He has listened to my worries about getting this Karen but also says I won’t get the treatment I need for it without the label. Any thoughts?

I’m looking for anyone with a similar pattern of rapidly progressive NLD-SFN. I’m in my 30s with hEDS and MCAS.

Mine doesn’t flare or come and go — it has been constantly progressive. In ~6 months, it has spread to roughly 80% of my body. I haven’t been able to find many patient stories or studies describing progression this fast.

It started asymmetrically in my face and mouth with paresthesias and then traveled downward. Over time, the tingling became primarily numbness/sensory loss.

I now have:
• Widespread numbness
• Reduced pinprick/sharp and temperature sensation
• Reduced/absent sweating in affected areas, with overheating and compensatory sweating elsewhere
• Increasing burning neuropathic pain despite multiple pain meds

I’ve had an extensive workup and seen multiple specialists. A major neuromuscular center recommended skin biopsy for SFN and lip biopsy for possible seronegative Sjögren’s, but I’m scheduled out quite a bit. My PCP has also ordered whole-genome/exome/RNA sequencing to look for potential genetic contributors.

From what I’ve been able to read, the non-length-dependent, facial-onset pattern can occur with immune/inflammatory causes and possibly small-fiber sensory ganglionopathy/neuronopathy. I’m especially interested in finding people who had SFN progress this quickly?

For anyone with similar NLD-SFN:
• How quickly did yours spread?
• Did it eventually involve most/all of your body, and did it stop progressing?
• If you had a skin biopsy, was it positive despite the non-length-dependent pattern?
• Did anything slow the progression or restore sensation/small-fiber function?
• What has actually helped the burning pain?
• How has this affected your quality of life or any surgeries you’ve needed?

Mostly, I just want to find other people whose SFN behaved like this and learn what happened over time.

Does anyone with these conditions get excruciating fatigue where even breathing feels heavy and it’s scary. Sometimes it feels like your not breathing and I am super quiet and almost out of it but your hr is Normal?

Thanks so much

I’m hoping to hear from others with biopsy-confirmed NLD-SFN especially those with significant autonomic symptoms or whose NLD-SFN was eventually determined to be immune-mediated.

My skin punch biopsy confirmed NLD-SFN, but the underlying cause remains unclear. My neurologist has discussed idiopathic vs. autoimmune/immune-mediated, and I’m trying to determine what should come next diagnostically.

My symptoms include:

significant fatigue and reduced exercise tolerance
heat intolerance and excessive sweating
chronically low blood pressure/orthostatic-type symptoms
Raynaud’s
urinary dysfunction/altered bladder sensation
sexual/autonomic dysfunction
intermittent tingling/sensory symptoms
brain fog/cognitive fatigue
substantial day-to-day variability, sometimes with worsening after exertion

I also developed a positive ANA after previously testing ANA-negative, but rheumatologic testing so far has not established a specific systemic autoimmune disease. Extensive rheumatologic serologies were negative for lupus, Sjögren’s, systemic sclerosis, MCTD, rheumatoid arthritis and antiphospholipid antibodies, although ANA remains positive

I have possible nail psoriasis and a history of longstanding iron deficiency (ferritin under 15 for approx 10 years) This has now been treated by Endometrial ablation (did not stop my periods but they have reduced significantly) and IV iron (Venofer Infusions) + prescription Iron supplement.

I have significant spine issues. Cervical and lumbar imaging has shown degenerative changes, including disc disease/herniation with nerve involvement. I have experienced recurrent episodes of significant low-back pain with radiating hip/leg pain as well as persistent numbness of my left shin. I understand that structural spine disease can cause large-fiber/radicular symptoms and would not necessarily explain biopsy-confirmed NLD-SFN or the autonomic symptoms.
Q: However, I’m wondering whether others with NLD-SFN have also experienced significant or relatively early degenerative spine/disc problems, and whether their doctors considered the two related or completely separate conditions.

I’m particularly interested in people whose initial autoimmune/rheumatologic workup was unrevealing but whose NLD-SFN was eventually explained.

Q: What ultimately identified the cause of your NLD-SFN?

Q: Did autonomic testing (QSART, autonomic reflex testing, tilt table, sweat testing, etc.) help? Were there additional blood tests, antibodies, imaging, or other evaluations that proved important?

Q: Has anyone had both NLD-SFN/autonomic neuropathy and significant cervical or lumbar disc degeneration? Were they ultimately considered unrelated, or did your doctors identify an inflammatory, autoimmune, connective-tissue, or other condition that could help explain both?

Q: And for anyone evaluated which specialist did you see? neuromuscular neurology, autonomic neurology, rheumatology, or another department? Who ultimately coordinated the investigation?

I’m not looking for an online diagnosis. I’m trying to understand what may still be missing from my workup and which specialist is best equipped to investigate it.