My Long Covid is actually POTS?

Posted on Feb 21, 2022
tl;dr: it's nice to have this diagnosis but god, it could have come so much quicker

A few weeks ago, I had an appointment with the Long Covid Clinic in Liverpool (that has recently changed hands, moving from Aintree hospital to a health centre in Speke). I described all the symptoms I’d been going through for the past year and the doctor said it sounds very much like I fall into the dysautonomic phenotype when it comes to Long Covid - - like the virus has messed up by autonomic nervous system and that’s why I …

  • get crazy heart palpitations when I move, that then make me breathless
  • died in the summer, could not handle (British) heat at all
  • have heightened pain; particularly in legs triggered by standing
  • am sensitive to the touch
  • fatigue after eating normal-sized meals
  • have brain fog and can’t remember anything anymore

… it’s because I have POTS, postural orthostatic tachycardia syndrome. The doctor did a diagnostic test there and then to check my heart rate change as it went from resting to standing, and because it jumped by more than 30bpm and stayed consistently (too) high whilst my blood pressure stayed steady, it confirmed POTS. Sucks but has actually felt so good to know what is going on. I have been asking for a POTS test - on the advice of the chronic illness community online - since last summer. it PAINS me that I could have had this diagnosis sooner but instead I just had ECGs that found nothing because, of course, wrong test. But okay, we got there in the end. End-ish.

I have now been taking beta-blockers for 2 weeks and it’s been transformative. I feel more steady, less breathless, and I haven’t had leg pain since I started taking them. I have had discomfort in my legs, but not the usual insane pain. I have also only had one day where I couldn’t get out of bed, as opposed to the usual 3-4 days out of a week where I’m stuck there. So, this is pretty insane to me. I wanna celebrate (and I have, and I am) but just knowing this could have been found sooner if someone had listened to my symptoms as a whole list and not as a conspiracy… ffs.

I wanted to write this post incase other people are in the same position but also because I have questions now. I know I have POTS but I don’t know if I ALSO have some kind of chronic fatigue syndrome, or did Covid just mess my lungs up with lasting damage? Or is it all just POTS and nothing more? I guess over the next few months as I ease into the beta-blockers and try to do more things because of this new body comfort (relative, I’m still feeling very sensitive to the touch and achey, it’s just not as acutely bad as it has been), I’ll be able to rule these other things out for myself.

I will let you know how it goes.