Why does exercising make me feel SO physically ill ??
I was diagnosed with pots september 2025, after having symptoms for 5+ years but getting really bad january 25. I danced 40 hours a week like usual from January until the end of march 2025, just feeling really faint and nauseous throughout but still succeeding and fine but tired afterwards.
Then in April I completely stopped dancing and could barely even walk out of the house without feeling so ill, which continued through the summer. I had to get a job during the summer and would stand 8 hours a day (it was in food service) and the rest of everyday for the whole summer laying down in my dark room, so ill and exhausted I couldn't even watch tv or read a book or listen to music. I felt like I had the flu for 5 months straight (even though i didnt because no one else around me ever got sick even though i was always with them, and also flu and covid tests came back negative each time), on top of being constantly exhausted, fainting, shaking, nauseous. I even started developing fevers every night (longest streak was 33 nightly fevers). I went to the doctor but they found nothing wrong in their tests so they said just take Tylenol for the fevers.
April to late september I didn't dance, it was the longest I had ever gone without dancing, and so I took an advanced ballet class during my fall quarter at university (twice a week for 2 hours each class) and felt so happy to be dancing but, without fail, a couple hours after each class I would feel SO SICK, get fevers or feel like I had a fever, nauseous, stomach problems, pure exhaustion, and it would continue on to the next day, and then would just et worse the next ballet class too. For 10 weeks I loved being able to go to class and I KNOW exercise is supposed to help pots, but I had to fight myself to get to class even though I love ballet because I felt THAT BAD.
Then winter break I couldn't do anything, and winter quarter I never went to a single class and just watched lectures online because I was so ill, only going to my play rehearsal at night but there was barely any dancing so it wasn't too bad. I went to new doctors like 20 times for all sorts of tests because I was still having fevers ALL THE TIME but they found nothing again so I have just given up on that.
I am so out of my normal shape, and my muscles are all atrophied, I was losing my mind just laying in bed all winter quarter, so now this Spring quarter which started two weeks ago I am doing another ballet class. It has been hard of course but my body keeps up the whole class, but again, a couple hours after class I feel like I have skin chills, nausea, fever, and bone exhaustion.
I don't know how to keep up, it feels like I just keep being able to do less and less. HOWWW do I keep exercising and not have this happen?? Is this normal for pots, do I just have to push through it like I've been doing or am I going about it all wrong. Do i have to start slower? My doctors know literally nothing and I dont want to damage my body, but I feel like if I'm gonna feel like crap I might as well feel like crap and dance, but now I feel like i can't do anything ever at all.
Idk if any of this makes sense, everything feels fuzzy and it is hard to put things to words, If you have any questions please ask. Any help or insight would be great because I feel so lost.
stats (?) if that is helpful:
21 female, on midodrine 2x daily, 6-12g salt daily, electrolytes in my water always, compression socks and tights, zofran as little as possible bc I have emetophobia but still probably twice a week because I am constantly nauseous 24/7