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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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JaimeS
- Author JaimeS
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6/2020: Quick run-down version!
Swift advice on starting / stopping meds
1) Be ruthlessly empirical with your self-experimentation. Don't let yourself be fooled by a transient improvement that might have come naturally in this relapsing-remitting disease. Don't let yourself be fooled by a...
I knew I was kind of phasing out there, towards the end, guys! I left out something pretty important in my last post, and that was the reaction of my endocrinologist to the ITT test results and the ensuing autonomic tests.
Thinking about illness differently:
One of the frame-shifts I learned...
Mayo is a unique experience. My mother bravely accompanied me as I decided that clearly the best time to visit Minnesota was in the dead of winter:
Yeah... it's pretty much like that. It was -18 degrees F while we were there. Luckily, Mayo is one gigantic rabbit warren with all these...
Leaving my job was absolutely the right decision, and I was lucky enough to find something else with my alma mater as an online TA while on sick leave from my old job. But there were some toxic things I had to ditch in my life in order to start feeling better.
The first of these was aspartame...
Okay, so I'm using this to get my thoughts down on paper, more or less.
I'll try to go chronologically, but there might be some overlap back and forth.
Family History
I believe I'm unusual in that two others in my immediate family also have been diagnosed with ME/CFS. When I was an older...