I’m newly coming to terms with my ADHD/MCAS/POTS/ED- all of which had been manageable until after I caught COVID. I’ve always been so bad at running due to my “air hunger” and always have been extremely insecure about it. I’ve now made it my goal to become “a runner.” I’ve tried bodybuilding, but running is my Achilles heel, so a runner I will be. I’d love to see more stories of runners with POTS 💗
That is very helpful! I have POTS symptoms but no diagnosis yet. I haven't run in years because I've been figuring out how to get my hips and back working together better, but as soon as you mentioned compression socks during running, I remembered how my calves would feel tender during longer runs, but also they looked red or splotchy near the ankles. Walking is another necessity. I could feel how red my face would get and knew I had to take a break. It was also interesting to hear about your calf work for your ankles and hips. It never occurred to me (or any of my gazillion doctors) to work on my calves! I have stuff to try now!
Reading this is so incredibly inspiring. I've had POTS all my life and it wasn't until the worst flare I've ever experienced last year that made me determined to run a half marathon. I'm so slow in comparison to my running group and get embarrassed having to take walking breaks, but this has helped me remove the stigma and made me feel less alone. I really appreciate you sharing your experience.
I don't have the best insurance but also have (undiagnosed) hEDS and am not currently seeing a PT. The suggestions your PT gave you about not stretching post run and what exercises you focus on is incredibly informative. How did you go about getting this diagnosis? I always thought I would need to go to a geneticist but the waitlist for the one locally is well past a year.
Also your suggestion of taking your hydration pack even on 1mile runs is huge! I thought it would be overkill but I appreciate you sharing your experience.
Does your dr have you consuming borderline insane amounts of salt? I have to have 4.5 tbsp per day, only way that’s possible is with S Caps or Vitassium
Anyway, you are so lucky you can run. I’m still doing the Levine Protocol and can’t stand for more than 20 minutes at a stretch. I miss running and walking SO MUCH
I do feel really lucky! There’s no guaranteed trajectory for anyone with POTS, but it took years for me to get to this point. And while a lot of that was hard work on my part, a lot of it’s also just luck that I had absolutely no control over.
My dad had a massive heart attack at 33 (and lived) and we never had salt in the house. Ever. I discovered it in college and was addicted! It’s always been a thing- I crave salt and I’m always thirsty- so I often wonder if the POTS was always there but just wasn’t diagnosed? I never had actual, frequent fainting spells until after I got COVID. (My dr says unlikely since I don’t have ED or other comorbidities as well). The T2D was definitely new, my dr called it “metabolic scarring”. There is a hashtag and a lot of cool info on IG about ED, POTS etc. the beta blockers plus salt help so much, but when I get stressed I have to sit or lie down, and if I drive for a long time I have to put a foot on the dash or out the window. My kids call the space between the side mirror and the door the “foothole”, which is probably not setting the best example!
I’m newly coming to terms with my ADHD/MCAS/POTS/ED- all of which had been manageable until after I caught COVID. I’ve always been so bad at running due to my “air hunger” and always have been extremely insecure about it. I’ve now made it my goal to become “a runner.” I’ve tried bodybuilding, but running is my Achilles heel, so a runner I will be. I’d love to see more stories of runners with POTS 💗
Isn’t “air hunger” such a weird feeling?!
That is very helpful! I have POTS symptoms but no diagnosis yet. I haven't run in years because I've been figuring out how to get my hips and back working together better, but as soon as you mentioned compression socks during running, I remembered how my calves would feel tender during longer runs, but also they looked red or splotchy near the ankles. Walking is another necessity. I could feel how red my face would get and knew I had to take a break. It was also interesting to hear about your calf work for your ankles and hips. It never occurred to me (or any of my gazillion doctors) to work on my calves! I have stuff to try now!
Reading this is so incredibly inspiring. I've had POTS all my life and it wasn't until the worst flare I've ever experienced last year that made me determined to run a half marathon. I'm so slow in comparison to my running group and get embarrassed having to take walking breaks, but this has helped me remove the stigma and made me feel less alone. I really appreciate you sharing your experience.
I don't have the best insurance but also have (undiagnosed) hEDS and am not currently seeing a PT. The suggestions your PT gave you about not stretching post run and what exercises you focus on is incredibly informative. How did you go about getting this diagnosis? I always thought I would need to go to a geneticist but the waitlist for the one locally is well past a year.
Also your suggestion of taking your hydration pack even on 1mile runs is huge! I thought it would be overkill but I appreciate you sharing your experience.
Does your dr have you consuming borderline insane amounts of salt? I have to have 4.5 tbsp per day, only way that’s possible is with S Caps or Vitassium
Yep! I was really concerned about it until a 24 hour sodium test showed that all of my levels were still normal even with the drastic intake.
Anyway, you are so lucky you can run. I’m still doing the Levine Protocol and can’t stand for more than 20 minutes at a stretch. I miss running and walking SO MUCH
I do feel really lucky! There’s no guaranteed trajectory for anyone with POTS, but it took years for me to get to this point. And while a lot of that was hard work on my part, a lot of it’s also just luck that I had absolutely no control over.
My dad had a massive heart attack at 33 (and lived) and we never had salt in the house. Ever. I discovered it in college and was addicted! It’s always been a thing- I crave salt and I’m always thirsty- so I often wonder if the POTS was always there but just wasn’t diagnosed? I never had actual, frequent fainting spells until after I got COVID. (My dr says unlikely since I don’t have ED or other comorbidities as well). The T2D was definitely new, my dr called it “metabolic scarring”. There is a hashtag and a lot of cool info on IG about ED, POTS etc. the beta blockers plus salt help so much, but when I get stressed I have to sit or lie down, and if I drive for a long time I have to put a foot on the dash or out the window. My kids call the space between the side mirror and the door the “foothole”, which is probably not setting the best example!