u/Puzzled_Frosting_226

hi guys. im more on the severe end of POTS with other comorbidites. but since developing pots my fatigue is on another level. i take ivabridine and bisoprolol for pots along 24hour compression garments electrolytes and extra salt. i sleep well. i try to eat regularly (eating with pots is miserable). im so tiredddd it feels like i have a fever but my temperature is normal. im currently doing a modified version of the CHOP protocol and reached 19 mins of supine biking and im careful about crashing, im not.

i was officially diagnosed with POTS in august of this year. the doctors dont care about anything but my HR AND BP. im struggling really i had to drop out of uni and i dont think i can go back next semester if this is the level of fatigue daily.

does anyone have any tips? anything that helped? foods to avoid maybe or supplements. anythinggg im desperate. or just support. thank you 🙏🏻

has anyone developed cafe au lait spots suddenly in adulthood after worsening of symptoms?

its cancer ! i dont know how to deal with this. just got my paraneoplastic panel results ❤️ also i have a tumor on my adrenal gland.

im so sick of how the medical system treats fnd patients too. the amount of fighting that i had to do to get the wrong help was insane. and the way i fought to figure out what i actually had was crazy. it drained the life out of me!!! im severely disabled, droppwd out of university, bedbound for months. so sad actually. i lost my life. i was in uni on the deans list, an athlete, had so much going on. it was stolen just for it to be a misdiagnosis. im so sorry for everyone with FND or anyone that was misdiagnosed with it. this sht is horrible. the system treats it as the new hysteria. i hope you all heal and live life with peace and love.

how did you deal with getting correctly diagnosed after an FND misdiagnosis? how are you now?

why is everything exhausting? how can i deal with this severe fatigue?, im struggling to do anything, fixing my posture tires me. going to the toilet makes me out of breath. im so tired i cant even socialize.

im currently going through finals season, i cant study i just cant, when i focus or use my brain, i get soooo fatigued and out of breath. im so sick of being sick. im newly diagnosed (2 months ago). im so lonely going through this. im doing my best and im trying to be optimistic but im physically too tired to keep being optimistic.

do you guys have any advice ?
please inform me if any of this is triggering, im new to the sub and the community. thank you 🤍