jenbooks
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Twice recently I've been backchanneled that I don't and never had ME/CFzs, should get off the cfs boards, and that my experiences and posts are irrelevant to the people with the "true" disease. Briefly, these were my symptoms at their worst:
Pain so bad I'd wake in tears
profound fatigue so bad I was couch or bedbound all day and ordered in groceries--this went on for eight months
feeling so poisoned in every cell I thought I would die soon
waking at four a.m. so sick unto death I once again figured I'd die soon
night sweats
low grade fevers daily
gastroparesis, severe constipation and stomach pain
two day horrific headaches where I simply lay not moving inside a world of pain with hot water pads under my neck and back
muscle weakness so I couldn't stand but had to lean or sit (standing was actually harder than walking)
vertigo so I'd have to hold onto the wall going to the bathroom so I wouldn't fall
those were many of the debilitating symptoms I lived with, along with terror that I was careening toward total bedbound disability and pain.
Sore skin, hyperacussus, stiffness all over
What helped me? Hyperbaric oxygen treatments, IV glutathione and meyers cocktail, ivig and getting out of a moldy place. Now with regular treatments the expression of my partially treated/halted illness seems to center around mcs and environmental illness with an outsize inflammatory and neuro-immune flare in reaction to "toxins" and molds healthy people never notice; along with some injuries along the way due to bad medicine.
That's it in a nutshell. I've told many people many a time that hbot is a sadly underutilized therapy in ME/CFS.
Pain so bad I'd wake in tears
profound fatigue so bad I was couch or bedbound all day and ordered in groceries--this went on for eight months
feeling so poisoned in every cell I thought I would die soon
waking at four a.m. so sick unto death I once again figured I'd die soon
night sweats
low grade fevers daily
gastroparesis, severe constipation and stomach pain
two day horrific headaches where I simply lay not moving inside a world of pain with hot water pads under my neck and back
muscle weakness so I couldn't stand but had to lean or sit (standing was actually harder than walking)
vertigo so I'd have to hold onto the wall going to the bathroom so I wouldn't fall
those were many of the debilitating symptoms I lived with, along with terror that I was careening toward total bedbound disability and pain.
Sore skin, hyperacussus, stiffness all over
What helped me? Hyperbaric oxygen treatments, IV glutathione and meyers cocktail, ivig and getting out of a moldy place. Now with regular treatments the expression of my partially treated/halted illness seems to center around mcs and environmental illness with an outsize inflammatory and neuro-immune flare in reaction to "toxins" and molds healthy people never notice; along with some injuries along the way due to bad medicine.
That's it in a nutshell. I've told many people many a time that hbot is a sadly underutilized therapy in ME/CFS.