Misdiagnosed with ME/cfs and PEM?
TLDR: If I can increase my steps from 300 to 3000 in one day without any repercussions I don't have PEM right? Or ME/cfs?
Beginning of this year I was diagnosed with POTS and ME. I'd been aware I had undiagnosed POTS since 2024, because I studied physiotherapy and could measure my (always kinda low 100/70) blood pressure and (+40 raised when sitting/standing) heart rate reliably, but the diagnostic process has been... difficult.
The specialist I finally went to takes cerebral blood flow measurements on a tilt table and mine was severely diminished in the upright position.
Based on this and history taking, in addition to POTS, she diagnosed me with ME/cfs and told me if I didn't lie horizontal as much as I could, so the blood flow to my brain would be better, I would only get more and more ill. She assumed I had issues not just with heat as I'd let her know, but also cold and said I must have trouble with painful acid build up and muscle aches, but I didn't relate to any of that. I got scared though, I was honestly really tired from always having to give my all to just get basic tasks done and there was no one else giving me advice, so I started radically resting, keeping my heart rate between 70-80, only getting up to pee, hoping that would somehow make my baseline better? Newsflash, it didn't.
Now she also said I had PEM. I had never heard of that before and also never felt like me being tired was that out of proportion. Obviously I knew something was wrong, but only after specific types of exertion. There were times in my life I was able to focus on my stamina by just biking and that would really help me feel better. I always used to say I can walk and run, as long as I keep moving, I just can't stand still.
My average step count the past months has been about 200-300, but since realising this I've been trying some more. I recently did 3000 steps a couple of days back to back, no problem. The past week I've been doing 5000 some days, I only have some muscle aches in my calfs from the many stairs it involved, but just a little bit. If I had PEM wouldn't that stuff be impossible?
And if my biggest problem is POTS wouldn't it make sense to make sure I exercise, not full on bedrest? How am I supposed to know I'm not hurting myself with exercise? How do you even test that?
I'm looking for opinions, advice and empathy, whichever you have I'll take it, thanks!