Can small fiber neuropathy present like ME/CFS?

[Turtle]

The problem I'm left with is an unclear diagnose. Clinical picture of, but no confirmation by EMG.
I was offered Gabapentin and when I turned that down, the neurologist looked at me as if had refused the lottery price.

ME was in the referral letter(against my explicit wish) I mentioned brainfog stopping me from studying in my final year and having to take a job as a telefonist.
A neurologist looking straight at me, me looking straight back, with an internal dialogue going on: Could it be right? I've been taught that. She looks serious though. Shortcircuit. Back to feet and legs. No verbal reaction at all.
A neurologist that I have to rely on to prescribe medication without any knowlegde of ME/CFS and my really bad brainfog.
I can't afford to lose more concentration and memory and to put on weight.
I phoned my GP'office to be put on low dose ropinirol again, I had gotten that through his office earlier, but now I had to go straight back to the neurologist for that.

 

[NightOwl]

I apparently have both as I get significant pem/malaise/flu like symptoms along with widespread pain and pots. I started off with mild pain and autonomic symptoms post virally which are now severe. The neuropathic pain has spread post covid from just my arms and legs to my entire face and scalp which is really unpleasant along with chronic migraines.

I’ve had a specialised neurophysiology test called microneurography which looked at the function of the varying small fibre nerves, C-fibre nerves which generate pain, along with autonomic and sudomotor nerves. All have spontaneous depolarisation meaning they were essentially over active or dysfunctional apparently not seen in healthy controls. They think the remaining “nerve sprouts” after the nerves have been damaged and regenerated cause the spontaneous activity. But it’s a specialised test so not widely in use and not been replicated much to my knowledge.

Anecdotally some of my friends who’ve had microneurography too have had over-activity of their autonomic nerves but not the c-fibre pain nerves but both were affected in my case. This seemed to correlate with whether or not they had significant pain.

This was in addition to a skin biopsy showing reduced nerve fibre density too. Genetic tests have ruled out a genetic neuropathy and other bloods for metabolic causes like diabetes and so it has been deemed idiopathic.

As I’m sure you know David Systrom/Fluge and Mella and co have speculated that SFN of the autonomic nerves can impair blood flow to the muscle and return of blood flow back to the heart so question whether hypoxia in exercising muscle is the cause of some of the symptoms like exertion intolerance.

I haven’t seen anything that has hypothesised the cause of flu like symptoms/malaise although some researchers assume that the nerves release things like CGRP/histamine/cytokines in excess. Although there’s no data to support this yet from what I know.

As my SFN has worsened I’ve developed flushing and red ear syndrome too which some class as erythromelalgia possibly due to dysfunctional small fibre nerves not controlling blood flow as they should. This has been classified as a “neurogenic flare response” of small fibre nerves by researchers such as Dr Anne Oaklander at Harvard. I have also developed what is thought of as neuropathic itch so something isn’t right with my nerves to cause all of the above.

But the question is, is the SFN a cause or consequence and what role does it play in ME especially as not all have it. Most of this is unanswered frustratingly and it’s even harder when you see yourself declining over many years.

Have you been offered any treatment? My c-fibres are affected too. They removed my ME diagnosis upon diagnosing this, I’m not sure whether it is because they don’t think I have it or to save me from the stigma. The phrase used was “it’s unhelpful and this diagnosis will make doctors think more about what’s wrong”. We joke about me faking ME in our house now but in reality I guess I identify as an ME person due to the PEM, sore throats I get when I over do it and symptoms I’ve not seen mentioned. I did have antibodies show up but they don’t think it’s related some how.

 

[jaded]

Have you been offered any treatment? My c-fibres are affected too. They removed my ME diagnosis upon diagnosing this, I’m not sure whether it is because they don’t think I have it or to save me from the stigma. The phrase used was “it’s unhelpful and this diagnosis will make doctors think more about what’s wrong”. We joke about me faking ME in our house now but in reality I guess I identify as an ME person due to the PEM, sore throats I get when I over do it and symptoms I’ve not seen mentioned. I did have antibodies show up but they don’t think it’s related some how.

Mainly just symptomatic treatment which hasn’t done much to be honest. Happy for you to direct message me to discuss more.