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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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judi --
May I ask, in order to better answer your questions -- are you relatively new to the illness, or just diagnosed?
I have students coming any minute, but I'll come back and answer your questions is a couple of hours or so.
I've been going to doctors and saying "somethings wrong since about '05" they kept telling me I was perfectly fine and I embraced that even though in the back of my mind I knew otherwise - then in '08 I had a day where I became so sick that I ended up in a hospital, in '09 I go the sore throat that lasted for almost 2 years and that's when I diagnosed myself with CFS. I spent the money to get tested for XMRV - they said it was positive for what thats worth in light of all thats happened since. Since then I focused on the medical community for help, I wanted to believe in doctors, they convinced me I was depressed and gave me a ton of pills, the pills made me feel better and then it turned ugly, I am newly off drugs and now I'm trying to learn the nuances of this illness so I can try to help myself and stop relying so heavily on doctors. I've read a lot of things on this forum and, most of what I read is over my head. I'm asking questions that most already understand, but I am desperate to understand how to take care of myself, because I feel that so far I've done more harm to myself than good and I don't want to continue down that path
this confuses me, could you explain the process a little more? pretty please
Is my pithiness not elaborated in the abstract the link points to?
Link: Exercise-induced allergies: the role of histamine release
Is continuous inevitable ? Can it be staved off?
"Some symptoms can get worse. If you have a relapsing-remitting pattern it will eventually become a continuously ill with increasing/decreasing degree pattern. "
relapsing - remitting pattern? relapsing means? crash/become ill after pushing? remitting means?.... I can't even guess.
increasing/decreasing - does this mean the symptoms.....well, I'm just confused and I'm sorry for not being able to understand it because it seems so well worded, but yet, I'm confused. If you're up to it can you dumb it down for me a little more? thanks
And a caution -- PEM can also occur with overexertion mentally, not just physically. Since PEM can occur immediately or can lag, it makes it extra hard for us to associate PEM with an activity sometimes.
New guy here. Umm, I have noticed lately that I'm having issues whenever I exercise, like going jogging, seems to trigger a week of sinus and throat issues and a feeling like I have a fever yet my temp is actually a taste lower than normal. I haven't been diagnosed with CFS, but I have to wonder.
When I was a kid all through school I'd get so sleepy I'd pass out in class. I woke up one day in a different period surrounded by different kids. Talk about embarrassing. I also could sleep through the day into the afternoon before waking. I can still sleep until ten or eleven now if I'm allowed to and wake with an awful headache. Also in the last few years I've had trouble with tingling on one side, my right hand and cheek.
Sometimes the tingling washes over me along with a funny looking thing in the right hand side of my vision of both eyes, like a horizontal electrical arc. I am also now having abdominal pain above my navel that according to a scope is mild gastritis.
How can I find out for sure what I have? I've been told it's anxiety...which as far as I'm concerned is a lazy doctor's copout. Anxiety is not a thing for me. I am far from "anxious" , I'm more irritated that my body seems to be crapping out on me at 37. Sorry for rambling.