ME/CFS induced "Idiopathic" Axonal Polyneuropathy
 

Hello. I wonder if anyone else here has ME/CFS (myalgic encephalomylitis aka Chronic Fatigue Syndrome). I've been disabled with ME for 35 years. It came on overnight and began with an acute Epstein Barr virus infection. From the first day I had severe neurological symptoms, including strong vibrating sensations throughout my body, especially in my feet and legs. The parathesias continued off and on for years.

Over the past 15+ years I slowly developed numbness, parathesias, muscles weakness, balance problems, POTS, tinnitus, gastro problems, vertigo, dry mouth, and a few other things. I had complained about this to many doctors and specialists over the years until finally my neuro ran a bazillion tests including nerve conduction tests and I was finally diagnosed with Idiopathic (unknown cause) Axonal Polyneuropathy. But I don't believe it's idiopathic. I believe it was caused by my ME/CFS, which is officially classified as a neurological disease in the UK:

It's well known in the ME/CFS community that peripheral neuropathy, whether small fiber, large, or both, is very common.

Unfortunately, there are few doctors who understand ME/CFS. Having progressive severe nerve damage on top of ME/CFS is a double whammy. Hoping this post might help someone. :)

Hey Grateful Gran,

Welcome to the forum. Thanks for sharing your symptoms. There's plenty of information on this site that may help you. Someone will come along and suggest the best areas to search. There seems to be a link between ME/CFS and PN and the other debilitating symptoms you have described. Do you have any strategies that reduce your symptoms or things that make things worse? Have you investigated the role of the Vagus Nerve?

Best wishes,

Atty

Hi Atty, Thanks for the reply. Yes, I’m aware of the possibility of vagus nerve damage but have never discussed it with my doctors. I’m lucky to have them acknowledge ME/CFS at all. Lol.

As for treatments, I’ve been on low dose Nalrexone for 6 years and it’s been a true godsend. I only need 1 mg. I had gotten up to 4 mg but had to back down till I found the best dose. I originally started taking it for my overall ME/CFS symptoms. eg: muscle and joint paint, brain fog, mood, etc.

When my PN advanced my neurologist said my nerve damage was severe and offered to prescribe heavy duty pain meds. He was surprised when I said I didn’t need them yet.
I also take 1000 mg of turmeric, which my rheumatologist suggested. Between those two, I rarely need an Alieve. I have osteoarthritis as well.

I believe I have autonomic neuropathy as well due to POTS, and chronic gut motility problems. I’m currently battling SIBO and am waiting for my first Rifaximin prescription to come from India. I’ve been doing a low FOSMAP diet, but it doesn’t help much.

Hey Grateful Gran,

What is Nalrexone? Does it have an alternative name?

I'm just reading a book on the Vagus nerve and its link between the gut and the brain and will report back anything useful.

Naltrexone is a drug that was originally created as an opiate antagonist to help drug addicts and alcoholics come off their addictions. For that purpose it is described in high doses (starting at 50-100 mg.

Then an AIDS doctor discovered by accident that in very small doses (less than 5 mg) the drug behaved very differently and increased endorphins. Since it’s used off label it has to be compounded at a compounding pharmacy. It’s called LDN (low dose naltrexone) and is useful for all kinds of diseases and conditions. eg. pain, MS, many different autoimmune diseases, etc. it doesn’t work for everyone but when it does it’s quite remarkable. It’s extremely safe and at such tiny doses serious side effects are non existent- unless someone happened to be extremely allergic.
It causes vivid dreams.

Here’s everything you need to know- there’s even an informational letter you can print off and give your doctor - that’s what I did. I can’t post links yet so you’ll have to look it up.

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Hey Grateful Gran,

Here's a link to some information about Naltrexone and its role in pain management. I was aware it was used to combat alcoholism but not for pain relief.

Thanks

Atty

Low Dose Naltrexone and Pain – Huraibi Rehab Institute

We have a related forum also -
Fibromyalgia and Chronic Fatigue
https://www.neurotalk.org/fibromyalg...ronic-fatigue/

Welcome Grateful Gran. :Wave-Hello:

I've been on LDN for three months and it has made a definitive improvement in my colitis. It doesn't work on its own, but it certainly seems to help the body deal with inflammation and has made a very significant difference to my life. Maybe, in time, it will also help my PN.

I have several of the same symptoms you do but think they are due to chemo-induced autonomic dysfunction. My symptoms include painful neuropathy, GI issues, orthostatic hypotension, and fatigue. I'm having difficulty finding a physician who can look at the big picture. Treating each symptom separately hasn't been very helpful. Will be consulting with an autonomic specialist later this month.