How common is neuropathy in ME CFS? % wise?

[ChookityPop]

It doesnt seem to be that many new posts in the neuropathy group here on PR.

 

[pattismith]

About 50% of Fibro have SFN, and it's the same with ME/CFS

 

[ChookityPop]

About 50% of Fibro have SFN, and it's the same with ME/CFS

Do you have a source showing this?

 

[pattismith]

Do you have a source showing this?

I haven't the time to find the source but we have already talked about this topic elsewhere, and especially here:

Small Fiber Polyneuropathy (SFPN) Proposed as Cause of Exercise Intolerance In ME/CFS | Phoenix Rising ME/CFS Forums

It is important to note, however, that SFN affected about 40-50% of the ME/CFS or FM patients these doctors described. This is not insignificant, especially if this subset of patients could potentially be treated. But at the same time this is still fewer than half of the patients, meaning that this is only one piece of the puzzle. What about the rest of us?

 

[xebex]

I’ll be investigating autoimmune SFN soon, I do believe I have ANS dysfunction that triggers my crashes and PEM. Ie being upright or stressing my spine is what causes my crashes rather than running out of energy.

 

[ChookityPop]

I’ll be investigating autoimmune SFN soon, I do believe I have ANS dysfunction that triggers my crashes and PEM. Ie being upright or stressing my spine is what causes my crashes rather than running out of energy.

Im planning on investigating autoimmune SFN myself. Keep us updated. How do you think is the best first steps in approaching possible autoummune SFN and ANS dysfunction?

 

[xebex]

Im planning on investigating autoimmune SFN myself. Keep us updated. How do you think is the best first steps in approaching possible autoummune SFN and ANS dysfunction?

I have been referred to an internist by my exasperated doctor - the only reason he refferred me is cos he saw me in ER once with an HR of 130bmp - he suddenly saw something "real" - I really have no idea how she works or if she'll be helpful, I'm kind of hoping she'll make some referrals to a neurologist and to radiology because i believe spine issues are also involved - i've mainly avoided neurologists because they have such a bad rep and our local one is apparently a total ass. - the issue for me is even if they do find something do they know how to treat it? and seeing as i have ME - i respond so weirdly to medications will it even work anyway?! Mostly i avoid the medical world because so far over 10 years they have done nothing - but more and more evidence is coming out nowadays of what could be wrong so i'm starting to feel a little more confidence in pursuing further diagnoses that could be causing or contributing to my ME.

I'm pretty shy about sharing "improvements" because often I lose the improvements after a while, but i will try to update here on any further info i get.

 

[sometexan84]

I know Autonomic Neuropathy aka Dysautonomia is common. The types of neuropathy I'm testing for at the moment are rare. Hoping to get my autoantibody results in next week.

Chronic inflammation demyelinating polyneuropathy (CIDP) – A form of Guillain Barré syndrome

Autoimmune Autonomic Ganglionopathy (acute pandysautonomia, autoimmune autonomic neuropathy, idiopathic subacute autonomic neuropathy)
50% of patients with AAG have high titers of g-AChR antibodies. Antibody levels correlate with the severity of autonomic dysfunction

Acquired neuromyotonia