Hello,

This is my first post here. I have recently received a SFN diagnosis based on the results of a corneal confocal microscopy and a sudoscan test. (I live in Spain and here it is impossible to get a reliable skin biopsy). I also have elevated FGFR3 antibodies, which seems to be associated with SFN.

Nevertheless, I feel like something is still being missed. In particular, I am concerned with this diagnosis because I have no pain and, to the best of my knowledge, this is the main symptom in SFN. Accordingly, I would like to know if it is possible to have SFN without experiencing pain.

I have several autonomic issues (e.g. tachycardia when standing or temperature regulation problems) which, according to my neurologist, are caused by SFN. However, my worst symptom is a non-stop profound malaise 24/7. I have experienced this unrelenting malaise since the beginning of my illness in March 2020 every single day. I try to describe it to my doctors as feeling like I have constantly a severe flu (without any respiratory symptoms) which never goes away. This malaise is really incapacitating and I am unable to leave my house and spend most of the day in bed.

I wonder if this daily malaise is actually a SFN symptom. Does anyone else experience a similar feeling?

Thank you in advance for your help.

Welcome Castorp.

Hey Castorp,

It's extraordinary that SFN can be diagnosed by corneal confocal microscopy. What an advance in medicine.
I can't explain your malaise but have been following the work of neuro-scientist Andrew Huberman and the role of the neuro-modulator Dopamine in motivation and focus and I wondered if his work would resonate with you.

Controlling Your Dopamine For Motivation, Focus & Satisfaction - Huberman Lab

Best wishes,

Atty

Possibly Chronic Fatigue syndrome as well?
Chronic Fatigue syndrome - Google Search

Or something similar?

It is very possible to have SFN without pain. I believe it may be a blessing that you have no pain.

JKPHOTO

While I cannot say that it is possible to have no pain, I have had SFN for 7 years and have very little pain except for slight tingling and sunburning in my arms and legs and a slight loss of balance (with a dosage that over time increased to 50mg of desipramine and 700mg gabapentin).
I was diagnosed 7 years ago by my neurologist with idiopathic SFN (a condition I attribute to statins) and do not have diabetes or any other health issues.
Recently, In an effort to find my minimum dosages, I gradually I reduced my prescriptions to zero and my tingling and sunburn sensations worsened especially at night making it difficult to sleep without an aid. In addition I also experienced a sharp toe pain (several events per week). Then I slowly increased my medications to a dosage of 25mg desipramine and 400mg gabapentin for which my symptoms are acceptable. Clearly my prescriptions provide some relief. However, my SFN continues to progress as measured by continued loss of balance. Whether my pain will stay the same or will increase in the future I cannot say.