Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, December 8, 2015

Could autonomic neuropathy be part of the problem?

Today I want to share an email I received from a reader, reposted here with permission. This person was diagnosed with ME/CFS, and later apparently received a diagnosis of autonomic neuropathy (AN). I'm posting the email here in case others wish to look into neuropathy. I certainly plan to as soon as I am able.

Here is the relevant portion of the email:
"I read your blog and just wanted to give you a quick comment. Your SOB, numbness/tingling of your hands and feet could all be part of autonomic neuropathy, which also appears to be part of the symptoms for a subset of us with ME/CFS. 
I got the skin punch biopsy done to determine if indeed I was positive for small-fiber peripheral neuropathy. You have probably read about how more research is revealing that Fibro and ME/CFS patients are being diagnosed with SFPN. The test gets sent to Therapath labs. When I showed Dr. [C] the results, he commented "Well, congratulations, you now have a "real" diagnosis that Dr's will believe! 
I was able to get IVIG thru insurance for the neuropathy, however with all the weird things my body does....I had a strange inflammatory response (a long story for another time)! at a VERY low dose, so stopped that treatment. 
Anyway....if you research autonomic neuropathy, you will see one of the symptoms is Shortness of breath, along with the tingling/numbness in the hands and feet.
Just wanted to mention this, as I know how frustrating it is to have to go thru the "flow" chart with all these Dr's....and no real answers. This illness has so many strange symptoms that are tied into the central nervous system, systemic inflammatory processes, and possible nerve damage!... 
I hope you get back to your "regular" baseline soon. (by the way, don't know if you have ever tried guaifenesin (OTC)Mucinex D.....I take it to reduce post-nasal drip and "stuffy" sinuses plus the pseudoephedrine gives a little "energy" boost. Worth a try for SOB, as well as post-nasal drip, not only the decongestive properties, but also appears to have some anti-inflammatory properties."
I always appreciate when other patients reach out and share information like this, so I wanted to pass it along to others. I haven't had an opportunity to look into autonomic neuropathy yet, but the first thing I intend to learn is whether it is a disease in and of itself, or a "collection of symptoms" as some sources describe it. Based on my initial brief review of online information, it seems autonomic neuropathy may not be mutually exclusive with ME/CFS -- in other words, maybe ME/CFS can lead to AN.  Maybe the author of the email above can comment?


  1. Very helpful, thanks for posting the email from your reader. For more along these lines, perhaps see also this recent interview...ANS disregulation due to infection of vagus and trigeminal nerves. Not a new theory but a really great articulation of it:

    1. Thank you StoneCutter. That's another one of those ME/CFS theory that's been on my radar for a while but I haven't had much time to really delve into. Maybe now's the time. Appreciate the link.

  2. Regarding Mucinex, it is also recommended to be taken 2x a day to help move fluids by Dr. Herbst, a prominent specialist who works with people with lipedema and lymphedema and other conditions involving the lymphatic system.

  3. Peripheral Neuropathy Treatment is usually directed at the underlying cause. On the off chance that the condition is because of a specific medication, the medication can be exchanged. On the off chance that the condition is brought about by a vitamin insufficiency, vitamin supplements may improve symptoms.