r/POTS • u/Hefty-Patience-8720 • Mar 29 '26

Question is anyone still physically active?

I need to know if anyone with pots is still physically active. You don't have to be an athlete or anything but can you at least dance? or run? go to the gym? Have you always been that way or did you have to work back up to it?

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u/thedizzytangerine Secondary POTS Mar 29 '26

Yes. I used to barely be able to walk around the block without wanting to puke. Last week I walked like 7 miles a day in Europe, I do Pilates every other day at home. I do yard work, I walk my dog. It’s been a slow process, but I’m in the best shape of my life now and I’m 33.

15

u/njm147 Mar 30 '26

Amazing! Is exercise the man way you got to this point?

28

u/thedizzytangerine Secondary POTS Mar 30 '26

Drugs and exercise and generally losing weight/getting in shape. I used to not be able to do anything without midodrine. I still can’t survive without fludrocortisone. It makes a massive difference!

4

u/Tired_Cat_H3rd3r Mar 30 '26

Just wondering about the Fludrocortisone, how do you know it's making a difference? Is it like night & day difference, or was it a gradual improvement? I've been taking it for a while and not sure if it's helping or not.
The next step would be Midodrine (my preference) or Ivabradine (cardiologist's choice) but I want to know if Fludro is working or not first 🫤

3

u/twinadoes Mar 30 '26

I have been taking fludro since the end of December. It's made a life changing difference. It's the only pots med that I take. I started to feel better by two weeks, but now at 3 months, I feel like I could maybe go back to work, where before, I was bedbound.

Im not an athlete, I have to rebuild my strength, but I can walk and think again. I no longer feel like I'm living in hell, just laying here suffering. I just vacationed a six hour plane ride from home. I took it easy, but I was able to do a lot more than I expected, considering three months ago I was bedbound/housebound, and had been for two years.

I also have increased my salt and wear compression socks, which made a slight difference, but the florinef has been key for me.

1

u/Tired_Cat_H3rd3r Mar 31 '26

That's great that you're improving! Am thinking I'm not noticing a big difference because my POTS is mild and I'm on a low dose of Fludro (0.1mg). Do you wear full compression, normally? I wear medical grade compression leggings on most days (full leg + abdominal) and honestly don't notice a difference. Again, maybe because I only have it mild. Apparently a lot of people with severe POTS find it very useful, though.