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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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None of the above fits what happened to me. I had bouts of swollen lymph nodes that would come with mild to moderate feeling of having the flu with fatigue (and head stinging) for several years (since my 20's) These would come and go, but never lasted more than three months. About 11 years ago I had a particularly bad episode and that hit me hard and never went away. Since then, the constant flu and pain symptoms have been with me. Two years after the bad episode, I developed involuntary muscle twitching and neuropathy type pain in my feet and hands. More recently I have circulation problems.
On my worst days I would describe it my illness like this: Waking up in the morning feeling like I have the worst flu of my life and I am recovering from being hit by a truck at the same time. After those initial feelings hit me, I realize that I am probably going to pass out if I don't lay down again.
what is the best description of your me/cfs?