Originally Posted by Grateful Gran

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.