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Old 05-24-2021, 07:20 AM
Grateful Gran Grateful Gran is offline
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Join Date: May 2021
Posts: 4
2 yr Member
Grateful Gran Grateful Gran is offline
New Member
 
Join Date: May 2021
Posts: 4
2 yr Member
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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.
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