hootOS

HOOT_OS - V.30

Stryxnine Amity Pulsatrix
(30/🇨🇦/Saskatchewan)
NACRS Organizer
esports broadcast producer
plural, autistic, adhd
disability & queer activist
hobbyist archival researcher
bylines in Traxion.gg
loves @kadybat and @traumagotchi and @kaceydotme

57RYX9 DESIGN - Visual FX and Graphic Design North American Cohost Racing Series organizer & founder
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MSN Escargot
hootwheelz@escargot.chat

i wanna hear from the experience of people with Chronic Fatigue Syndrome. I'm noticing some extreme fatigue that has been around for at least a decade, but it has been getting significantly worse over time to the point that I'm losing my stamina to do sim racing the same way I used to. It's limiting to more than just sim racing, but given that i don't do much in the first place it's worrisome that my favorite hobby is now getting further from my grasp.

i also notice that sleeping doesn't let me feel rested or energized, i just feel mildly less tired. every day i feel at least some level of tired.

is there anything i can do to determine that it may be something other than CFS? what else could be causing this exhaustion?


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in reply to @hootOS's post:

i've chronic fatigue

it's pretty tough to determine unfortunately. and if you do have it you'll probably have to put in more work around determining that fact than doctors will care to do for you.

there are nigh endless reasons you could feel tired. it's kind of like headaches in that way; could come from practically anything. difficult to diagnose without a lot of time, effort, and trial and error because of that.

some other terms that apply to me specifically are dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome). i've been nearly, though not entirely, bedridden for the past 20 months since onset, with temperature dysregulation, heat sensitivity, constant tiredness unrelated to sleep type and amount, brain fog, and bloodpooling. the severity of my symptoms vary on a monthly, weekly, and even daily basis based on energy expenditure and what seems to amount to chance.

sitting upright, standing upright, and especially standing still will without fail gradually increase my symptoms. after 30 minutes i can't sit anymore, and after 10 minutes of standing completely still with my back flat against a surface my limbs will be utterly purple, i'll be itchy all over, i'll be wildly short of breath, i'll be dysfunctional for the rest of the day and likely the next few days thereafter.

all that is merely my own experience. i do not a great deal of others' experiences with chronic fatigue, nor do i know much of CFS in particular. that's partly, though not wholly, because it can encompass a great many things. your symptoms need not be the same as mine, nor nearly as severe i imagine. i also imagine there are those whose symptoms are even worse than mine.

one thing of note with chronic fatigue is that if you have it, as i understand it, exercise will make you feel worse, not better. which is quite the pickle. because exercise is good for your health in a lot of ways. but with CFS pushing past your energy envelope tends almost invariably to make you feel worse, and noticeably so, in the days that follow, not better. and the more often you push past that energy envelope the worse you'll feel and for longer.

if you're not sure whether you have it, it's difficult to determine whether you do. all i can truly suggest is listen to your body. experiment with energy expenditure as you see fit, but cautiously and only when safe. test your limits sometimes and if you feel it right to do so, not all the time. even if rest won't make you feel all better there's no sense ignoring the need for rest and feeling worse. the important thing is to stay alive and live as fulfilling a life as you can under the conditions you have in the moment.

thank you for sharing, this was really insightful. perhaps it may not be CFS that i have but some other things causing my exhaustion, but the randomness of your symptoms seems to mirror my own experience. some days i can do a few physical tasks and be fine, other days just getting out of bed is a herculean effort. i know that PTSD and C-PTSD can make one feel exhausted like me, irritable like me, and other symptoms that mirror my own experience pretty closely though. so it might be that, along with other thingies. idk, the human body is so complex it's a miracle we all don't fall onto the floor in a heaping mess of bone and flesh.