Do you have small fiber neuropathy (SFN)?

[N_Dina]

The prof I saw in the UK explained my negative punch biopsy this way, along the lines of "well of course it was negative, your neuropathy is not length-dependent so you'd need biopsy samples from multiple locations to show it".

Instead I was sent for a microneurography investigation. Abnormalities there + context was enough for them to make a confident SFN diagnosis.

@Ryan31337 hi! I have come across your comment while looking for people’s experiences with skin punch biopsies to diagnose SFN. Could you kindly share who did the biopsy and microneurography in your case? Did this result in any meaningful immunological treatment?

 

[Braganca]

There is a Reddit for SFN which is helpful to see the symptom picture. I had wondered if I had it bc I have burning / itching on arms, cold feet, dysautonomia and the rest of ME/CFS. But after reading the Reddit I felt I didn’t have it — their symptom profile is different and can be quite extreme / disabling due to the pain especially in feet and lower legs I think it was.

 

[Ryan31337]

There is a Reddit for SFN which is helpful to see the symptom picture. I had wondered if I had it bc I have burning / itching on arms, cold feet, dysautonomia and the rest of ME/CFS. But after reading the Reddit I felt I didn’t have it — their symptom profile is different and can be quite extreme / disabling due to the pain especially in feet and lower legs I think it was.

Lower leg pain, which worsens on standing and gets particularly painful towards the end of the day, was a clear symptom for me from onset. It was something my POTS cardiologist noted early on before I understood the significance. It can be completely absent if I spend most of the day sitting/horizontal though.

@N_Dina i'll send you a DM

 

[Alinda]

Lower leg pain, which worsens on standing and gets particularly painful towards the end of the day, was a clear symptom for me from onset. It was something my POTS cardiologist noted early on before I understand the significance. It can be completely absent if I spend most of the day sitting/horizontal though.

@N_Dina i'll send you a DM

I have that exact type of leg pain! It can get quite severe for me, leaving me unable to stand for more than a few seconds on some days.

 

[Ryan31337]

I have that exact type of leg pain! It can get quite severe for me, leaving me unable to stand for more than a few seconds on some days.

Sorry to hear that. I find my tolerance for standing and subsequent leg pain varies with exertion the previous day - some sort of PEM overlap.

But it can fluctuate more significantly from other causes too. I recently started Atogepant for chronic migraine and that lowered the threshold massively, thankfully only temporarily. Similarly, sometimes in the days after infection or vaccination it improves to the point that I can't trigger it at all.