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How do you figure out whether you have post exertional malaise?

2021.11.27 14:34 squirrelswirl_568 How do you figure out whether you have post exertional malaise?

This might be kinda long, feel free to skim.
I've struggled with fatigue since I was 12. And since I was 8 or 9 I've woken up exhausted, despite getting plenty of sleep and going to bed and waking up at the same time every day. I couldn't function without caffeine, which I started drinking around 13. I'm 20 now. By around November or December 2020, it was bad enough to where the constant fatigue felt felt like torture. Being awake was plain uncomfortable. In February 2020, it was so bad that I could barely even get up out of bed. I forced myself to to eat, and that's it. Coffee didn't help at all anymore. The fatigue ended up a little better by March and I could at least get up and walk around again but doing things was so hard. When I'd go to class, I'd have to fight to keep my eyes open. The constant intense tiredness felt horrible, being awake now felt like torture. I gave up caffeine at this point because it just made me really weird all the sudden and didn't at all help. Around may, I started slowly changing my diet. I went from eating junk all the time to eating lots of veggies, legumes, and unprocessed meat. Also, my fatigue got better. It might be total coincidence, but I'm not feeling it intensely 24/7 anymore.
However, I have these episodes where I feel insanely fatigued. It doesn't quite feel like sleepiness, like when you're tired because you haven't slept. My whole body feels heavy, sluggish when I get these episodes. Even something like shifting in my chair is fatiguing, or just getting up and trying to walk. When this happens I usually have to just lay down and wait it out, or sometimes I'll take a nap. It sometimes comes with malaise and feeling kinda.. down? But not in a mental way, it's hard to describe. It doesn't feel like it's coming from my mind, it's distinctly coming from something physical. It's like there is this fog over me and nothing I could think of could really get a rise out of me or make me excited, because my whole system is working at 1/3rd of it's capacity or just sloooowed way down. it's like whatever was physically wrong with me was making my mind shut down and not produce enough dopamine or norepinephrine.
This happens out of the blue. It usually lasts hours to a day. Sometimes it's daily, sometimes every several days.. pretty inconsistent. The rest of the time, I'm usually at least somewhat fatigued all the time but not to the point where I can't function. Except when I first wake up.. I feel absolutely exhausted when I wake up, much more than when I go to bed. I also feel awful when I first sit up when I wake up. Like sick, weird, and just gross.
So now I'm wondering if I may have cfs, but I don't know if I have post exertional malaise. How do I figure out whether that's what I'm experiencing? I've read it comes on from minimal activity, how minimal are we talking? I did some light exercise yesterday and I'm going to wait 2 days and see what happens, if I have sudden profound fatigue, but it could be random and not connected. How should I go about figuring it out?
I have a LOT of other issues, by the way. Episodes of severe flu-like malaise, a general feeling of being deeply unwell and just feeling icky and sick, headaches, weird neurological symptoms, joint pain (may be from my hypermobility), 24/7 tachycardia, erratic heart rate and pounding heart, pots, lightheadedness even when I'm sitting, episodes of feeling really "off", really warm, and stiff and sometimes shaky, my calves cramp up when I walk sometimes to where I couldn't walk for months. Also spine pain, back pain, neck stiffness and discomfort. but doctors can't find anything. They say I've already had an extensive work up and don't know what's going on. All they know diagnosis-wise is I have pots, and I'm hypermobile (but don't meet the hEDS criteria). I also have very slight tonsillar ectopia, but only 3mm and it doesn't block flow so chiari is probably not causing any of this. I do have a chiari diagnosis but I think nothing of it for that reason. I also have partial disk dessication, no idea why. And a partially (but in my case almost completely) empty sella. Those aren't going to be causing my severe symptoms. The horrible malaise, trouble walking because of my calf muscles clenching up painfully when I try on and off and I can never predict when, the lightheadedness, shortness of breath, racing heart, and feeling really off/"drugged", discomfort from being upright in anyway and weird adrenaline surges and feeling like I'm exerting myself when I'm just sitting. I can't even stand or walk without foot pain, and my hands hurt with activity too so I can barely do anything without lots of pain. And this isn't even all of it. And now I may also have cfs. The only medication that brings relief, and makes me feel more like a normal human again, is midodrine. It doesn't help the musculoskeletal stuff of course but it helps the other stuff and I feel less "weird" and less tired. But it makes me really cold, constant chills for hours, and it always loses effectiveness when I start taking it daily.
Does any of this sound like cfs? How do I figure out whether I have PEM?
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Repost for title formatting
I've tried to sell this stuff a few times. I need the space. Just pay $50 to take it all shipped ($30 local). Everything works. Pumps still quiet. I've been water cooling my PC since 2004. Fittings included. Only ever used that Petra stuff and distilled water.
Danger Den block not included I'd like to keep it as a souvenir. It just happened to be in the photos.
D5 Pump w/res 120x2 XSPC RADIATOR 2 fans Misc Fittings.
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