Can small fiber neuropathy present like ME/CFS?

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.
 
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.
 
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.
 
yes, MECFS (PEM) is a symptom of SFN, from blood flow abnormalities -tissue hypoxia, that's my true belief. At least in up to 70% of patients with ME who have SFN.
The most common cause of SFN is Sjogren's too, but if we say ME is a form of dysautonomia caused by SFN, Sjogren - dysautonomia is a spectrum and you fall somewhere on that line, younger age and neuro involvement gives usually only neuro symptoms with minimal or no dryness.
Knowing many people who fit SFN/Dysautonomia or those who also fit SjD so SjD/dys/SFN, there is very little to no difference in symptoms and possible treatments so it is the spectrum of one illness usually
 
There are adult onset muscle diseases which have similar presentations to PEM.

For the last 10+ years I've been quietly slid into the ME/CFS bin because I spend so much time horizontal.

The oddity for me has been that my version of "pacing" has consisted of half hour walk, lie down to gain energy, walk to the grocery store, lie down to recover, afternoon walk, lie down to recover.

The exercise/recover/exercise/recover is an anathema in ME/CFS but often seen in muscle diseases.

I wonder now what would happen if a had a clean slate and walked into a doctor saying "everytime I walk during the day I have less and less energy in my legs to the point where I have trouble walking. Next day I'm good to go again."
 
yes, MECFS (PEM) is a symptom of SFN, from blood flow abnormalities -tissue hypoxia, that's my true belief. At least in up to 70% of patients with ME who have SFN.
The most common cause of SFN is Sjogren's too, but if we say ME is a form of dysautonomia caused by SFN, Sjogren - dysautonomia is a spectrum and you fall somewhere on that line, younger age and neuro involvement gives usually only neuro symptoms with minimal or no dryness.
Knowing many people who fit SFN/Dysautonomia or those who also fit SjD so SjD/dys/SFN, there is very little to no difference in symptoms and possible treatments so it is the spectrum of one illness usually
sorry I have peripherally following this thread and the SjD thread, so my points may have been covered.

Here you’re asserting PEM is SFN, and ME is SjD? So everyone is SjD with SFN, since the diagnosing criteria for ME/CFS includes PEM.

Again if this were all true wouldn’t there be higher rates of SjD antibodies in ME/CFS patients.

You are also assuming the root cause of PEM is hypoxia which is not the case that we know yet. There are some pretty good studies on muscle biopsy’s that provide a more clear picture:

 
You don't have to care what I believe; time will tell. i am okay with waiting, I am treating my autoimmunity and responding well. If I listened to brilliance found online where they often ignore ANA 1:160 for example, I'd remain untreated... doh

I never said SjD always causes SFN or that SFN is the only cause of ME. I dont even want to go in "what is ME" because I did say it's just word salad definition for now. I can speak of patients who have SFN and some other autoimmune marker, and thosea re well above 50% of patients. The rest is obviously hard to decode and I stopped following research like OMF because they seem to be getting nowhere too. It seems those iCPET studies show the pathology well and that is explained with SFN.
Lets see in 10 or 20 years if I was right.
 
You don't have to care what I believe; time will tell. i am okay with waiting, I am treating my autoimmunity and responding well. If I listened to brilliance found online where they often ignore ANA 1:160 for example, I'd remain untreated... doh

I never said SjD always causes SFN or that SFN is the only cause of ME. I dont even want to go in "what is ME" because I did say it's just word salad definition for now. I can speak of patients who have SFN and some other autoimmune marker, and thosea re well above 50% of patients. The rest is obviously hard to decode and I stopped following research like OMF because they seem to be getting nowhere too. It seems those iCPET studies show the pathology well and that is explained with SFN.
Lets see in 10 or 20 years if I was right.
I guess I’m confused on what you are arguing? If you have an automiune marker and are able to get treatment for it that’s great! If others, “50% of patients” have autoimmune markers then they have a known autoimmune condition and should get treatment for that condition. Then they don’t have ME/CFS which is awesome cause they can get treatment.

I like many here have had extremely thorough autoimmune workups, including all markers multiple times over years for SjD. I feel like you’re applying your unique case to all ME/CFS.
 
No. Having autoimmune marker doesn't mean they don't have ME.
Oh My God!

Maybe it means their ME is autoimmune? (Also causing SFN).
ISN'T THAT the dominant theory behind all Norwegian trials?
Why do people on this Forum act like it's something unheard of or completely unlikely

SFN = AUTOIMMUNE MARKER
50-70% MECFS= HAVE SFN

Last time I checked with AAN (ASSOCIATION OF NEUROLOGISTs)
The academic society snd insurance accepts SFN as autoimmune if diabetes excluded, so you should consider
 
The newer IOM criteria, that I gather is supposed to be more appropriate for clinical diagnosis, and less related to ensuring homogenous research groups, doesn't say there are any excluding diagnoses, as far as I'm aware. Just a collection of symptoms - if you have them, you have ME/CFS.
Interesting I thought CCC was the gold standard!

“The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.”
 
Interesting I thought CCC was the gold standard!
I may be wrong about the motivation for IOM being specifically clinical use and CCC being research use, that's just what I recall people saying. But it does look like the IOM criteria is what the CDC in the US recommends for diagnosis.

There's also the even newer NICE criteria, which as far as I can tell, doesn't say having another condition prevents receiving a diagnosis of ME/CFS.
 
That's all old criteria, if new research shows ME is autoimmune then 'having autoimmune wont exclude MECFS'. And the criteria you posted even includes comorbid 'sicca syndrome' (aka Sjogren's) because it's so common that they observed it as comorbid (while it is actually the same illness).

I do agree if one has, lets say, MG (myasthenia gravis) aabs, then they probably dont have ME or they might have ME+MG, and well before ability to measure ME, it wont be too helpful diagnosis and the treatments might be the same anyway. This is, as we know, quite rare.

But if you have some half recognized antibodies like Early Sjo panel, new aabs for SFN, Dysautonomias etc., you don't know if your ME is basically part of the symptom of those rare illnesses like dysautonomia. While in MG you know ME is not the presenting symptom
 
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