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’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.

I'm a big Lil Peep fan, and one thing I've always found incredible is how much music he managed to make in such a short career, and how many genuinely great songs came out of it.

There's something I've been wondering about for a while, though. A lot of his songs are obviously very self-destructive. He talks about drugs, death, not expecting to live very long, and sometimes says things that, knowing how his life ended, sound almost disturbingly prophetic in retrospect.

How seriously do you think he actually meant those things at the time?

Do you think a lot of it was partly a persona / artistic way of expressing what he was feeling - even if those feelings were real? Or do you think he genuinely had that level of pain and really believed that his life was going to end young?

Obviously none of us can know exactly what was going on in his head, and I'm not trying to romanticize his death or make assumptions about him. I'm just curious what other Peep fans think, especially people who have followed his music and story for a long time.

Hi everyone!

I’ll try to keep this not too long, because I have written about my story in more detail before, but I understand that very long posts can be hard to read. The text was written using an autotransle.

I would be very grateful if anyone could answer even just one part of this post. I am not asking anyone to diagnose me online. I would just really like to hear from people who have gone through something similar: what you think about my situation, what directions I should still look into, what tests or evaluations you would suggest discussing with doctors, and what has helped you personally.

For almost two years now, I have had symptoms almost every day that seem very similar to small fiber neuropathy, although I have not yet had a skin biopsy to measure nerve fiber density. My main symptoms are burning, a hot/sunburn-like feeling, and sometimes tingling at the level of the skin. Most of the time, the skin looks completely normal - no rash, redness, or visible changes.

The symptoms come in waves. I have had bad months when the sensations were present almost every day and interfered a lot with my life. I have also had better periods when the burning was mild or almost gone. But overall, this has been going on for about two years, with changing intensity.

At first, my legs were affected the most - mainly my calves and lower legs, sometimes my feet. Later, the sensations became more common in my back, neck, shoulders, and arms. Sometimes they still return to my legs. Mild cooling, cool water, or a fan often helps, but very strong cold can sometimes make the tingling and discomfort worse.

A regular EMG/NCS did not give a clear explanation. I was told there were mild axonal changes, but no demyelination. MRI of my cervical and thoracic spine did not show an obvious cause. In my blood tests, I have had persistent moderate eosinophilia for a long time, around 0.7-0.9 ×10⁹/L, with elevated IgE and ECP. CRP and ESR are usually normal. ANA and ANCA were negative. As far as I remember, B12 and glucose were normal. Parasites were checked several times, but nothing convincing was found.

One previous skin biopsy showed an inflammatory infiltrate with eosinophils and mentioned productive vasculitis, but there was also a possibility that it was a foreign body granuloma. So doctors have not really been able to understand whether this is connected to my symptoms or not.

Antihistamines did not help much. Gabapentin gave partial but inconsistent relief. At one point, I was prescribed a low dose of prednisone and hydroxychloroquine, but I still do not know whether the later improvement was because of the medication or just the natural fluctuation of the symptoms.

I am especially interested in whether anyone has had burning sensations without visible skin changes that changed location - for example legs, back, neck, and arms. Were you able to find the cause of your small fiber neuropathy or similar symptoms? Which tests were actually useful, and which ones did not help much?

I am also wondering whether anyone has had symptoms of SFN together with moderate eosinophilia, high IgE, or high ECP. Did you ever find out whether it was connected to the nerves, the immune system, an allergic process, vasculitis, or whether it turned out to be a separate issue?

If you have any ideas about what else I should check, I would be very grateful. Maybe glucose metabolism, vitamins, autoimmune causes, Sjögren’s, celiac disease, monoclonal proteins, inflammatory or immune causes - any direction that turned out to be important in your case.

I would also like to ask what helped you the most with the burning and tingling. Gabapentin, pregabalin, duloxetine, amitriptyline, topical lidocaine, or something else? Did anything non-medication related help, such as cooling, water, sleep routine, diet, physical activity, or stress reduction?

And one separate question: how do you cope with this psychologically, especially when symptoms last for months or years? Do you talk about it with your family or close people? Do they understand?

This part is especially hard for me. Right now I only talk about it with the closest people in my life, and even then I sometimes feel like they are tired of hearing about it. With most other people, I usually just say that everything is fine, because it is very difficult to explain invisible burning sensations and long-term medical uncertainty. People often do not understand how something can feel so bad when you look normal from the outside.

I would be grateful for any similar stories, advice about tests, treatment experiences, or just human thoughts about how to live with this. Even if you can only answer one small part, that would still mean a lot.

I wish everyone here symptom relief and recovery, if possible. Even if the cause is different for each person, it is very important to know that you are not alone with these sensations.

Hello everyone!

I’m a young man from Eastern Europe. My story has been going on for about two years now. I’m writing here because I’m tired of carrying this almost entirely on my own, and I hope to meet people who truly understand how hard burning sensations, neuropathic pain, and long-term medical uncertainty can be.

Of course, it is sad to see how many people are suffering. But at the same time, it feels a little easier to realize that I’m not alone. In a community like this, I don’t have to explain for a long time that chronic burning without visible skin changes is not just anxiety or “paying too much attention to sensations.”

I understand that some people here may have much more severe conditions. I don’t think my case is the worst or the most unique. But at times I really do feel very bad, and I still don’t have a clear explanation for what is happening.
English is not my native language, so I apologize if some parts of this text sound unusual.

How it started

About two years ago, I developed a very unusual burning sensation rather suddenly. I had never experienced anything like it before.

During the first months, my legs were affected the most - mainly my calves and lower legs, sometimes my feet, but not mostly my toes. At the same time, or around the same period, I could also feel it in the back of my neck, between my shoulder blades, and on my back.

Over time, the distribution changed. The burning in my legs became less frequent, while it started appearing more often on my back, the back of my neck, my shoulders, and the upper parts of my arms. It still comes back sometimes in my calves or on the top of my feet. It rarely happens on my chest, and almost never on my face.

It is not itching. Most of the time, the skin looks completely normal: no redness, no blisters, no rash, and no visible increase in skin temperature. The sensation feels like it is at the level of the skin - as if the skin is heated or burning from the inside. Sometimes there is also tingling. When it happens on my back, it can feel similar to the sensation of sun-overheated skin after being on a hot beach, even though there is no real overheating.

Separately, I have had symmetrical scaly and itchy patches above my elbows, but in the areas where the burning occurs, there are usually no visible skin changes.

The hardest part of this whole story is not only the lack of a reliable diagnosis, which I have struggled to get, but the physical sensations themselves. When the burning gets stronger, it is genuinely difficult to tolerate.

How the symptoms change

At the beginning of the illness, the symptoms could last for hours, the whole day, or almost continuously for several days, although the location could change.

Now the condition is unstable. I can have almost normal days, when the unpleasant sensations are absent or around 0-1 out of 10. Then the burning can come back for several days or weeks and reach 5-7 out of 10, sometimes more. It can last for a few hours, disappear, and then return later in the same area or in a different one.

I have not found a clear connection with morning, evening, or any specific type of activity.

Mild cooling usually helps. A fan directed at the affected area or cool water can noticeably reduce the burning. Bathing or putting my legs in water often brings relief. However, very strong cold can sometimes have the opposite effect: the tingling and unpleasant sensations may increase.

In addition to the burning, I sometimes have bilateral pain around my knees. I cannot say for sure whether it is the joints themselves, the surrounding tissues, or nerves - it is just the place where I feel the pain. It can appear even without significant physical activity, and sometimes it is much stronger than the burning. For example, the burning may be 1 out of 10, while the pain around my knees is 5 out of 10.

During the first months, I also sometimes felt weakness in my legs. I do not notice any pronounced numbness or obvious loss of sensation.

Eosinophilia and other test results

Around the same time that the symptoms appeared, I developed moderate eosinophilia. As far as I know, before this my eosinophils were low or within the normal range.

In different blood tests, my absolute eosinophil count was approximately 0.6-0.9 ×10⁹/L. This is above normal, but below the hypereosinophilia threshold of 1.5 ×10⁹/L.

Other findings included:

total IgE around 400-470 IU/mL

eosinophil cationic protein (ECP) around 55 ng/mL

normal CRP and ESR

negative ANA and ANCA

normal glucose, vitamin B12, and LDH.

Parasitic causes were checked multiple times through blood and stool tests, but nothing was found.

I have chronic sinusitis and an allergy to summer grass, specifically ryegrass. I do not have asthma, and nasal polyps have not been found. My allergist confirmed that this allergy should mainly affect me only in summer, which clearly does not explain persistently elevated eosinophils for two years.

I don’t know, but I suspect that the eosinophilia and the burning may be connected, because they appeared around the same time. It is possible that they are parts of one process, and it is also possible that they are two parallel problems. But it is difficult for me to consider it a complete coincidence.

Biopsies and other investigations

One of my skin biopsies was taken deeply from the abdominal area. The report described an encapsulated epithelioid-giant-cell granulomatous reaction, a mixed inflammatory infiltrate with lymphocytes, eosinophils, and neutrophils, and a perifocal picture of “productive vasculitis.”

At the same time, the pathologist suggested that it could be a foreign-body granuloma. In a second biopsy taken from another area, vasculitis was no longer described.

Because of the combination of the biopsy findings, eosinophilia, chronic sinusitis, and neurological symptoms, my doctors are still discussing possible vasculitis, including EGPA. But for now, this is only a possibility, not an established diagnosis.

The picture is not classic: I do not have asthma, ANCA is negative, eosinophilia is moderate, systemic inflammatory markers are normal, and no convincing internal organ involvement has been found. I am not saying that I have EGPA or another vasculitis, but this question has not been fully closed yet.

According to my NCS/EMG result, I was told that there were mild axonal changes without demyelination. However, I am not sure whether the right protocol was chosen or which nerves were actually tested. As far as I understand, a standard NCS/EMG mainly evaluates large nerve fibers and does not rule out small fiber involvement.

MRI of my cervical and thoracic spine with contrast did not show myelitis or another obvious cause of the symptoms. My most recent echocardiogram was normal. Earlier CT scans mentioned a minimal amount of fluid in the pericardium, a very small lung nodule, and an enlarged liver, but later the liver size normalized and no significant organ involvement was confirmed.

What I have tried

Antihistamines did not give any noticeable effect.

Gabapentin gave partial but unstable relief.

At one point, a doctor prescribed prednisone at approximately 10-15 mg per day for about a month and a half, as well as hydroxychloroquine - Plaquenil.

It is difficult for me to understand how much the later improvement was related to the medications and how much was due to the natural course of the condition. The symptoms did not disappear, but over the last year they have generally become weaker and occur less often than in the first months.

Why I am considering small nerve fibers

I suspect that I may have small fiber neuropathy or some other condition related to hyperexcitability of small nerve fibers. I have not yet had a special skin biopsy with intraepidermal nerve fiber density (IENFD) measurement, so SFN has not been objectively confirmed.

Still, the nature of the burning, the tingling, the normal appearance of the skin, the changing locations, the reaction to temperature, and the limitations of standard NCS/EMG make me continue to investigate this direction.

In my country, specialized care for such conditions is not easily accessible. I do not want to blame all doctors, because I am sure there are good specialists, but among the neurologists I have seen, I have hardly encountered a deep understanding of small fiber neuropathy. Usually everything was limited to a standard neurological exam, testing sensation with a pin, and a regular NCS/EMG. If those tests did not show a major abnormality, the conversation basically ended.

Doctors also are not always interested in spending a long time on a complex case that does not fit into a standard pattern. So over these two years, I have unwillingly become a researcher of my own condition. I had to read studies myself, study mechanisms of neuropathic pain, look for diagnostic methods, and compare my test results.

Sometimes it feels like I have managed to help myself and understand my own picture better than most of the doctors I have met. This does not mean that I consider myself a doctor or that I am going to take serious medications on my own. It just means that when professional help is limited, you are forced to go deeply into the problem yourself.

I think there are many people here like that - people who were forced to study their own illness and who sometimes know rare aspects of their problem better than a non-specialized doctor.

How I am trying to cope

During the first year, I cried a lot. The condition was completely new, physically difficult, and frightening. What hurt especially was that nobody could properly explain what was happening to me or whether it would ever go away.

Now I have developed some partial acceptance. When the symptoms are almost absent, I can live more normally and think less about the illness. But it is not full acceptance. When the burning or pain comes back, the fatigue, anxiety, and feeling of unfairness come back with it.

It is still hard for me to accept that I may never get one final answer. At the same time, I keep looking for ways to reduce the symptoms and understand the mechanism.

Finding this community felt unexpectedly comforting. Of course, I am not happy that other people are suffering. But it calms my soul a little to see that I am not alone and that here I do not need to prove that my sensations are real. People with chronic burning and neuropathic pain understand each other in a way that even relatives or doctors sometimes cannot.

What I would like to ask

I am especially interested in the experience of people who have deeply investigated their own situation:

Have you ever had migratory burning without visible skin changes, which was stronger in the legs at first and later became more common in the back, neck, shoulders, and arms?

Has anyone had SFN or a similar neuropathic picture together with persistent moderate eosinophilia and elevated IgE or ECP? What did you or your doctors connect it with?

Were your doctors able to determine whether the eosinophils were connected to nerve involvement, or did it turn out to be a separate allergic condition? Eosinophils can potentially be neurotoxic, as far as I understand.

Which tests actually helped clarify the situation: skin biopsy with IENFD, quantitative sensory testing, QSART, autonomic testing, repeat NCS/EMG, or something else?

Which treatable causes of SFN or similar burning sensations are especially important to rule out?

Have you seen similar cases in eosinophilic, allergic, autoimmune, or vasculitic diseases, even when the person did not meet classic criteria for EGPA or hypereosinophilic syndrome?

Which medications gave you the most noticeable relief specifically for burning and tingling? What did you try that truly helped?

If one medication did not help, what worked better, and why did your doctors choose that option?

What helped besides medications: cooling, water, physical activity, changes in sleep or diet, elimination of an allergic or other trigger?

How did you find a specialist who truly understands small fiber disorders? Are there any signs that can help tell in advance whether a neurologist is knowledgeable about SFN?

If your cause remained unknown, were you still able to achieve stable symptom reduction and return to a more normal life?

I would really appreciate real stories, possible directions to discuss with doctors, links to similar cases, and experiences with what turned out to be the most effective.

Thank you to everyone who read this long post. I would be grateful even for a partial similarity with my story. Sometimes one detail from another person’s experience can point to a direction that no one had considered before.

I wish everyone here support, symptom relief, and, as much as possible, recovery. I really hope that each of us can find at least something that makes life easier.

We were given a challenge we did not choose, but now we have to go through it. I believe we should not give up. We should do everything reasonable to improve: search for information, analyze, and try treatments together with doctors. Many people will not understand us, but that is not a reason to give up. For some of us it is extremely hard, but each of us is the one person who must fight for ourselves. No one will care about you as much as you care about yourself. Medicine and AI are not standing still. Maybe many of us will achieve significant improvement one day if we do not stop looking for answers. I believe in that.

Even though the reason we are all here is terrible, it is good to know that we are not alone and that we can support each other.