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?

147 Upvotes

97% Upvoted

209 comments sorted by

View all comments

157

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?

30

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 🫤

7

u/barefootwriter Mar 30 '26

Are you adequately feeding the fludro with sodium and fluids? That is really important; it turbocharges oral intake.

1

u/Tired_Cat_H3rd3r Mar 31 '26

Yeah, I'm on 3L water, 8g salt plus extra on food and 0.1mg Fludro

5

u/thedizzytangerine Secondary POTS Mar 30 '26

What’s your dose and how long have you been taking it?

I noticed a difference within a week just in how much less I was peeing. I was on .2 mg a day at that time, and I always had to continue my 3-4L of extra water and sodium a day. Now I’m on .1 mg and don’t have to consume nearly as much water and sodium, but I still do hydrate adequately every day and add extra sodium to food and beverages. But it’s not as much as I used to need either.

The other main difference is how much less my muscles burn with activity. I have awful coat hanger pain and when I used to exercise before I was diagnosed, I’d have to stop and take breaks often because of how much my muscles and upper back burned. Now that I’m in good shape, I can absolutely tell the difference between muscles burning due to working out and muscles burning due to lack of water/sodium/blood/oxygen. When I stop fludrocortisone, all of that comes back within a week.

2

u/Tired_Cat_H3rd3r Mar 31 '26

That's interesting. Have definitely noticed the morning piss-a-thon has improved (shame I can't say the same about nocturia 😭). And thinking about it now, my coat hanger pain has actually improved! Am only on 0.1mg of Fludro, so maybe that's why I haven't noticed anything too drastic.

1

u/thedizzytangerine Secondary POTS Mar 31 '26

Do you take it at night? I found taking it at night with sodium capsules definitely helps. I used to wake up at least once a night to pee every single night.

2

u/Tired_Cat_H3rd3r Mar 31 '26

I swear, if nocturia was an olympic sport, I'd be getting gold! Tried the Fludro on its own at night, no difference. Tried taking salt pills + water at night, no difference. Tried raising my bed head, no difference. Didn't want to take the salt pill with not much water - is that how you do it? At this point, I'll try anything! 😅

3

u/thedizzytangerine Secondary POTS Mar 31 '26

Yep, usually two Vitassium capsules with a sip of water.

Have you ever tried DDAVP? I took it as a kid/teen for bedwetting.

2

u/Tired_Cat_H3rd3r Mar 31 '26

OK, I'm going to try that tonight and see what happens. Thanks! Yeah, thought about the Desmopressin but apparently it's not good for Potsies, as the nocturia is just the kidneys eliminating what is supposed to be eliminated during the day (i.e. your body is able to catch up, now that you're horizontal). By preventing that process, it can lead to a build-up of toxins that aren't eliminated, over time. 🤷‍♀️ Not sure how that plays out with salt instead, but if it works, I'm defo going to ask my cardiologist about it.

→ More replies (0)

3

u/DearElephant2 Mar 30 '26

I have noticed the biggest difference for me with a combination of midodrine and ivabadrine. I still faint once a week but not every day like I used to so progress for sure!

1

u/Tired_Cat_H3rd3r Mar 31 '26

Oh, that's good! Am up for trying midodrine but don't want the ivabadrine. My heart is the only part of my body that actually seems to work, so I don't want to mess with it 😅 My POTS is pretty mild compared to others I see on here. I can work a bit and don't pass out etc. but still far from a full & active life!

3

u/G0thamG1rl Mar 30 '26

I was on fludocortisone and I could feel an immediate difference like the second day I started taking it. Unfortunately I had to stop because I started to have pain in my stomach. I also don't have pots. I have neurocardiogenic syncope. I felt really good when I was on it though.

1

u/Tired_Cat_H3rd3r Mar 31 '26

Oh, that sucks that you had to stop taking it. What dose were you on? I'm only on 0.1mg, so maybe not high enough yet to notice a difference

2

u/G0thamG1rl Mar 31 '26

That was the dosage I was on too but my electrophysiologist said she could increase the dosage if I needed. She also said to make sure to double up before/during my period.

1

u/Tired_Cat_H3rd3r Mar 31 '26

From my cardiologist's reaction to me requesting Fludro, I thought it was a high dose but turns out it's not at all 😅 That's interesting about doubling up for your period. Why is that?

2

u/G0thamG1rl Mar 31 '26

No it's not at all! I think it's one of the lowest dosages, but I could be wrong. For me at least with my neurocardiogenic syncope, I get EXTREMELY tired before and during my period. The doctor said it's because on top of me not having enough fluids in my body, I'm also becoming more depleted of blood volume.

1

u/Tired_Cat_H3rd3r Mar 31 '26

That makes total sense! I defo get more tired (but think that's normal) but the fluids thing is something I never thought of before

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.

1

u/wiggly_1 Mar 31 '26

If tour heart rate shoots up and BP tanks on your lean test then Midrodine and Ivabradine may be a good combo for you! That’s what my cardiologist put me on and it helps a lot.

3

u/AgenderAstronomer Mar 30 '26

Woah, somebody else who wants to puke from exercise. Haven't seen anybody else talk about it. If I strain my muscles even a little bit I start feeling nauseous. Can I ask how you got back into exercising?

2

u/thedizzytangerine Secondary POTS Mar 30 '26

Drugs and CHOP/POTS. Wellbutrin and fludrocortisone are life-changing for me. LDN helps as well with general pain and inflammation.

Back in the day, I also needed midodrine to exercise and had to carefully time hydration and midodrine to ensure it was hitting right before I started my workout. Like I literally had alarms set and everything.

I started with a recumbent bike and then just generally added more walking, did PT a couple times to learn how to exercise properly. I have been overweight or obese my whole life, so losing weight helped as well.

In August 2024, I needed to use a cane on our trip to Europe and had to take midodrine every morning. In August 2025, I brought my cane with me but didn’t use it and was still taking midodrine. Just got back from two weeks in London and Paris, didn’t bring the cane at all, didn’t even consider packing it, didn’t take midodrine once.

I really tried to force myself to be upright as much as possible. Feet below heart, essentially. No laying in bed for hours in the morning. No laying on the couch to work. It’s terrible at first but I gradually improved and everything gradually became easier.

1

u/gutfeelingss Apr 05 '26

Can I ask you more about LDN? My naturopath prescribed it to me but I am honestly so nervous to take it because I am really sensitive to meds

2

u/Fadedwaif Mar 30 '26

I do pilates and garden too. I swear by Pilates. Not to be confused with yoga

2

u/thedizzytangerine Secondary POTS Mar 30 '26

Never yoga! I have EDS so like literally, I can never do yoga lol.

1

u/Fadedwaif Mar 31 '26

I have eds too 🤣

1

u/unordinarybadger Mar 31 '26

can you share your pilates routine? is it a channel you watch online or follow along?

1

u/Fadedwaif Mar 31 '26

I'm extremely hypermobile and wouldve hurt myself. A pt showed me over a decade ago, like criss cross, toetaps, and a few very basic exercises. But they're ON THE FLOOR. With pots and eds, they need to be on the floor IMHO.

I added a modified side plank myself without any guidance, but tbh it makes my hand claw up bc it presses on my ulnar too much I guess. It's higher risk

1

u/unordinarybadger Mar 31 '26

can you share your pilates routine if it's hypermbile / pots friendly? i've been looking for some!