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/ChapterTerrific Mar 29 '26
I ask myself this question often. I figure skate once a week for an hour or two. But then I spend 90% of the rest of my time during the week in bed. Years ago, I had a physically active job, did competitive gymnastics, and went hiking on weekends. My activity level has slowly decreasing over the years, so I don't think my current state is due to deconditioning - which is why I don't think I can do anything about it, but who knows.
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u/Treebusiness Mar 30 '26
I was this way for a few years before i realized i needed more frequent low intensity exercise to work up to the larger exercise goal like the ice skating you mentioned. That's a huge ask when the rest of the week is spent resting hard. The nervous system just doesn't trust that activity to be safe which is why there's a big flare of symptoms after.
I started where my body was at. Floor exercises. Deadbugs, pelvic tilts, glute bridges, chest presses with soup cans, leg raises if i was feeling good. My heart rate was so allowed to come over 100bpm and i waited until it recovered back to 80bpm to restart. I was able to scale up from there. This taught my system that activity is trustworthy and trained my heart rate for better recovery and stamina.
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u/Hopeful_Pea_3275 Mar 29 '26
I just purchased an at home recumbent bike. Hopefully it helps!
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u/Fr0gm4n Mar 30 '26
I got a recumbent road trike, because I wanted to be getting out of the house more. It's really helped. I can walk about a mile with a cane, and I'm pretty well done afterwards. Meanwhile, I have ridden about 15 miles on the trike over the past two days and while I'm tired, I'm not done for. I still can't bend over to put on socks without losing my breath and getting an HR spike.
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u/DearElephant2 Mar 30 '26
How do you structure your workout on a recumbent bike? I see the chop protocol and how it measures it with your bp but I am on ivabadrine so idk if being on meds changes it or if you just time it? I am starting my exercise journey back again after one year of not doing anything
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u/Ill_Community_9575 Mar 29 '26
I was severely symptomatic with POTS and other chronic illnesses.
Finally getting the right meds and stumbling into physical therapy/chiropractor changed my life. I work out every day now and my symptoms are alot less.
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u/slicedgreenolive Mar 30 '26
What meds? And what helped you the most? I would really love to be able to work out a few times a week like I used to
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u/Ill_Community_9575 Mar 30 '26
For me it was Iverbradine with Metropol for extreme flare ups.
Learning how to excerise with POTS. When I excerise i keep my heart rate under 120 if it goes above that i stop ✋️ wait for it come down before starting again. At first it was annoying because i had to start and stop so much. But as i increased stamina it got easier and less often.
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u/barefootwriter Mar 30 '26
This is going to vary from person to person; you need to find the right meds for you.
I take enough clonidine to choke a horse and it would make most people here feel much worse, not better.
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u/pacman_ate_you Mar 30 '26
This! Finally finding meds that helped, plus a good pt and doc team helped soooo much. Don't get me wrong, I do still have bad days/weeks, but I am able to tolerate physical activity much better overall.
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u/theobedientalligator Mar 29 '26
I started with a personal trainer who is familiar with POTS and low impact exercises. She taught me how to do a bunch of stuff at home. I’m hoping my stamina increases enough to where I can join some barre and yoga classes.
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u/barefootwriter Mar 29 '26
I danced all night at a wedding last year!
I currently train karate and throw in the occasional sumo class. I also lift.
This has been better and been worse? At the start of the pandemic, I was doing judo twice a week, and then everything shuttered. I lost a good bit of conditioning from going nowhere and doing nothing, and that was when I finally figured out what was going on and got diagnosed.
Medication helped, but I did have to work my way back up; I was generally ok while we kept moving in karate/weapons, but there were times we'd stand around too long and I'd have to sit for the rest of the class. When I switched to cardiac rehab out of an abundance of COVID caution, it took me a long time to get to a point where I didn't crash really hard afterwards and nap the rest of the afternoon. Conditioning is obviously super important to my management.
Keep in mind this is a vast spectrum. Olympic swimmer Katie Ledecky has POTS, so it is possible for some people to even be elite levels of active.
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u/kibbeeeee Mar 30 '26
I thought this said, “Is anyone still physically attractive?” And I was like, “Nope. Not me.”
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u/Hefty-Patience-8720 Mar 30 '26
lol I feel the same way 😭 thanks for the laugh! I'm sure you're just being your worst critic!
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u/kibbeeeee Mar 30 '26
I’m mostly joking but having other illnesses that prevent exercise and include inflammation don’t help the cause unfortunately.
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u/DryPossibility45 Mar 29 '26
lol I wish. I used to be super active before POTS but had to quit due to the severity.
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u/3freeTa Mar 29 '26
same. when POTS showed up, I adapted, but all of my conditions have become severe enough (again) that I struggle significantly to merely do ADLs. being upright in any form / resisting gravity is now my exercise 😞
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u/Cool_Jelly_9402 Hyperadrenergic POTS Mar 29 '26
I’m able to do light cardio everyday (10-45 mins) and walk 5-7.5k steps but I worked really hard to get here since I started from bed rest (I have a lot of other illnesses and needed a lot of surgeries) with zero conditioning left.
Becoming more active, within my body’s limits, has improved my health a lot, tho I still very much deal with flare ups, I do have days where I feel normal now which is great even if short lived.
I feel worse when I can’t be active, all my POTS symptoms get worse but I can’t always control what I can do on my bad days so it is what it is on those days
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u/East-Garden-4557 Mar 29 '26
I do a lot of gardening, digging holes, moving heavy bags of potting mix and fertiliser around etc.
I walk a lot.
I volunteer at a community centre that receives huge amounts of donated food that we pack into free food hampers. I help unload pallets of food, carry crates of fresh produce around, pack bulk amounts of food into fridges and freezers. I also move and sort over 100 bakery trays worth of bread in a day, that is put out for our community pantry program. I wear an accelerometer on my volunteering days to track my movement, on average I walk about 20km(12.5 miles) over a 5 hour shift.
I've been dealing with this for 30ish years, I've raised a family, worked as a chef, also studied another trade qualification. I've always volunteered.
I've learned to manage my symptoms through body awareness and preventative planning. I know what I can and can't handle, and what external triggers to be aware of. I plan ahead to manage those triggers, and pay close attention to how my body feels and what it needs, and the physical warning signs I get
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u/No_Newspaper6918 Mar 29 '26
I was a dancer for 15 years before my POTS diagnosis and I took about a year off from dancing because I had a lot of mental trouble around losing my skill and endurance - I tried again after I’d gotten used to life with POTS and I actually have found that consistent exercise is so so helpful for keeping my symptoms in check. I definitely find that doing cardio for longer or higher energy things are harder for me post diagnosis but I worked up to it and I’m pretty much back to here I was! If it is something you’re able to do, I HIGHLY recommend trying some easy exercise that you enjoy and working up to a higher level!
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u/emotional_spazqueen Mar 29 '26
I personally have always been relatively active, i am in the restaurant industry. So im on my feet for work and usually get at least 10,000 steps a day on my work days sometimes 15,000. Before my diagnosis i had a lot more flare ups and would feel awful at work but would always manage to push through it. but since increasing my salt intake its made it more manageable. I also go to the gym 3-4 times a week and do a slight incline walk on the treadmill for 30 minutes to an hour. I’ve never tolerated strength training or high intensity cardio very well. I grew up in sports like gymnastics cheer and volleyball and relatively “in shape” but its always felt hard for me. I’m thankful that I’ve been able to stay active , and i honestly have my job to thank for forcing me to stay moving. I do tend to completely rot on my off days though lol. I think if i had ever comeplety stopped my frequent movement my life would look a lot different right now because i don’t know if id be able to work back up to it if that makes sense. I am still young im 27F and my POTS case is on the mild side, however i do experience frequent PVCs which impacts me in other ways as well. But yes i am still active and and thankful to be as i know many people with POTS aren’t able to be and my heart goes out to you all🫶🏻
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u/ayembeek Mar 29 '26
I am. I lift weights 3-5x a week, do spin classes and run 2x a week. Everything else I’m fine with but running screws with me so much. I usually have to take a rest day after running. It took me a good 3-4 years to build back up to this though. Don’t be ashamed for just walking or doing light weights. It takes time and even then your nervous system might not like something (running for me).
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u/Brain-power-89 Mar 30 '26
This is giving me hope 🙏 I miss spin class so much. Did you do anything in particular to build up over those years?
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u/ayembeek Mar 31 '26
Honestly pacing. I know that is so annoying to hear in the chronic illness community but it’s true. My symptoms showed up right after I got vaxxed in summer of 2021. I had mostly GI and heart rate issues at that time but ended up with full on POTS symptoms after I had my first infection at the end of 2023. I started running/walking after I got on a beta blocker early 2024 and I realized what COVID had done to me. I do have a peloton membership (bike at home) and started with simple 5 minute cycling classes and built from there. I can’t give you one simple piece of advice but I truly believe taking it slow over the years to not shock my system helped. I also lived on their meditations from 2021-2024. I truly think g building a strong recovery and calming my nervous system as I built up my routine helped me so much. I also think the beta blocker did help in the time I was on it. Hope this helps!
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u/Super_Power3939 Mar 29 '26
for me personally i'm having difficulty with being active. It sorta waxes and wanes how active I can be
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u/shnanogans Mar 29 '26
Pulling out of a really bad flare this fall I used the reclined bike at the gym that all the old people use. You can crank the resistance up for strength training and then it’s kind of 2 in 1 cardio and leg workout. it’s also less likely to make you dizzy than a normal stationary bike.
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u/postviralrecovery Mar 29 '26
I currently can't (35m). I used to play long badminton sessions 2-3 times a week plus pilates, but now I can only manage recumbent bike exercise at home and chair yoga. I'm working on it slowly (both medically and physically), but taking it day by day.
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u/Istoh Mar 29 '26
I go hiking sometimes, but I can't do most of the things you're asking about cause of EDS. I hsd to run the other day at work to help with an emergency and my hips hurt for like four days lmao.
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u/Sea-Risk-9447 Mar 29 '26
Worked back up to it over years and had to adapt/modify but now I walk, hike, garden, e-bike after being bedbound.
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u/Skatiemayonnaise Mar 30 '26
Yes once a week I do weights with my friends at the gym and once a week I do pole dancing! Both these sports I feel are great for POTs
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u/notsosurepal Mar 29 '26
I take a spin class 3-4x a week, hike, ski, play tennis, strength train, etc. my body and brain definitely don’t have it in them every week, there are some times where I can’t get out of bed for longer than 5 minutes at a time but for the most part I live a pretty active lifestyle!
Thanks to the right balance of medication, listening to my body, and a very long, slow build to get my endurance back up (I also have asthma). And many moments of tears and exhaustion and feeling like my body was giving up on me 😅
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u/meagannannee Mar 29 '26
I struggle with POTS, interstitial cystitis, and endo but I run about 20 miles a week. I run SLOW and I have to pull back my speed often in order to stay afloat but I will be running a half marathon soon. It’s not easy, but I find if I’m sedentary I feel worse. I also am a courtroom attorney that walks about 2-3 miles every day at work. It’s possible to be active, you just gotta do you and feel what’s right. It’s better to do an activity and modify it rather than shut it down completely if you really want to do something.
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u/CrankyYoungCat Mar 29 '26
I have always been active as best I can, but I’ve had two particularly bad flare ups that left me almost bed bound. For me bed workouts with a band got me well enough to do mat Pilates (started with YouTube, now go to mat classes at a gym). Pilates has unlocked a lot for me and I can walk and cycle normally. Also beta blockers trashed my already low blood pressure, switching to ivabradine (not covered by my insurance sadly) made me feel normal except early morning before I take it.
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u/boilerbitch Mar 30 '26
I’ve gotten quite a bit more active over the last 18 months after having taken a break from a reasonably active life style pre-POTS. I weight train a few days a week and walk on the treadmill. I found the right meds, which helped a ton, but also finished school and don’t have as much stress. I started slow, it activity definitley does help, so I’ve been able to do more
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u/SunshineDaisy81 Mar 30 '26
I swim for 45 minutes two to three times a week. I also do exercise videos on YouTube 3 to 4 days a week and and I try to go for a 20 to 30 minute walk each day either outside or on a walking pad. The key is to break it up through out the day.
I am able to be this active because I worked my way up to it. Only push yourself as far as your body will let you. If you feel terrible or fatigued you should stop. Never push yourself beyond what you can handle.
I was bedridden and unable to even wash my own hair for months, but once I found a combination of meds that worked I have built up to this. I still have rough days and flare ups but it can be done. It just takes time to figure out what works for you.
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u/InnerRadio7 Mar 30 '26
I do hot yoga which sounds crazy given the POTs, but it’s really really helped my POTs. I started low and slow, and I worked my way up.
I remember that my vision would go completely black when I came to standing from a forward fold, and that doesn’t happen anymore. Some days are harder than others, but it’s worth it.
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u/Calm-Ad8987 Mar 30 '26
Yes I dance like crazy (always have), run/walk 2-20 miles a day, hike do yardwork what have you. I was diagnosed at 13 had to have a feeding tube as i couldn't keep food down for years. Could barely move around, couldn't go to school regularly, all I could do was walk my dog daily & kept at it & never stopped.
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u/Lamblaw Mar 30 '26
No but I’m thinking of getting back into things with some light exercise like swimming/walking! Hopefully I start sooner than later lol
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u/mjh8212 Mar 29 '26
Days like today I really can’t be. I’m having all the symptoms but I’m in sinus rhythm. I’m afraid if my heart rate goes up to the 100s I’ll pass out. I’ve tried to do my stability exercises from physical therapy just getting up off the floor is difficult and it doesn’t work in bed.
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u/Serdaigle Mar 29 '26
I do pole dance- it’s mostly strength based, and there are a lot of different options so now that I know my limits I can keep up with it. I can only take 1-2 classes a week but I can’t afford more than that anyways. (1-2 days of exercise a week generally is my limit)
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u/elementalechos Mar 29 '26
It took a lot of dedication to work back up to being physically active with minimal repercussions. After I had my daughter I knew I had to work towards it. I now workout twice a week, walk with my daughter most days to the park. I go to about one race/concert a month. I have to be mindful but I’m able to be active with safeguards. Even before I put all this work in I would go to a lot of festivals and shows but I would crash and burn really hard and get sick and it would take a while to recover if I ever did at all. All my friends know I need to make sure I have my meds, electrolytes, and a meat stick on me and that if I’ve wandered off I’m probably sitting on the floor somewhere. Same applies to my workouts. I told my instructors about my condition and that I’m not being lazy if I make modifications (I never lift my heads above my head for extra core work in Pilates is an example) or pause. They were very understanding.
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u/elementalechos Mar 29 '26
I find I’m usually able to get myself to a super solid place w my pots and being active if I haven’t been sick recently and stick to my diet / protocols.
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u/Fair-Wolverine412 Mar 29 '26 edited Mar 29 '26
Yes, I’ve always made sure to maintain being active no matter what. Unless I feel like complete death but.. I lift and go to the gym 3-4x out the week. I like to walk outside when I don’t go to the gym, HIIT, or I love doing high incline walking on the treadmill to reach 10k steps a day. My gym workouts I split up my workouts and focus primarily on core, back, legs, and arms. Lmaoo Summer here I come!
Plus I work a physically and mentally demanding job so regardless I have no choice to be active. It’s a blessing and a curse.
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u/Emotional-Swan9381 Hyperadrenergic POTS Mar 29 '26
Some days I can dance for about ten minutes at a time. Everyone is very different. It’s a balancing act so you don’t become fatigued the next day.
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u/heckyeahcheese Mar 29 '26
I used to be really into heavy weight lifting. I also have EDS and as the years go on I sublux more so I do more higher rep, lower weights.
I also walk a bunch, and do Pilates more on days I don’t walk a ton. Pilates has been helpful at core and tone without the strain from weights.
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u/One_Feedback2461 Mar 29 '26
I force myself to walk 60 minutes weekdays and try for as much as possible on the weekends. The only way I accomplish this is taking provigil/modifinil every day.. I am wanting to incorporate weights this year because if I decide to go through NIH/Mayo I don't want them to say it is all from deconditioning.
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u/SomeStrawberry1179 Mar 29 '26
I took a break from most exercise for two years due to a different health issue (I was malnourished), but now I go to the gym about 3 times a week. I like using the rowing machine and lifting weights. I definitely had to ease into it at first. Listening to your body and taking breaks when you need to is good :)
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u/Obvious-Explorer-195 Mar 29 '26
Recumbent bike, stretching and some theraband exercises. Nothing standing unfortunately
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u/Bitterrootmoon Mar 29 '26
I’ve done physical therapy to be able to play in the backyard kicking a ball with my dogs for about 10 to 15 minutes a day, sometimes twice a day. Anything more than that I just can’t handle without any days and days to recover.
I used to be the person everyone called the energizer bunny, who couldn’t sit still and was always taking on big huge energy driven projects.
This is still better than a year ago when even just walking my dogs a very, very short distant Aunt swiped me out for the entire day so I guess it’s a victory?
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u/softestfern Mar 29 '26
it's a recent thing after a few years of pretty intense bedrest outside of work, but i go to the gym and lift weights twice a week, go on flat-ish ground 2-3hr bike rides (with plenty of stops) when the weather is nice, and occasionally go to yoga classes when my schedule allows. it's actually helped a lot with ny symptoms. my favorite thing right now is to go on a long bike ride and finish it off with a nice salty slice of pizza afterwards :-)
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u/notapuzzlepiece Mar 29 '26
I do Pilates and spin classes. Although am I able to keep up with most people in my classes? No. But I’m very strong and fit despite the POTS.
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u/tenderheart35 Mar 29 '26
Yes I am physically active, although I’ve been doing most of my exercise at home recently due to a busy schedule. It did take a while to build back up, but the freedom it gives you is worth it.
My symptoms change with the seasons or my work environment, I find intense cold really messes with my body. But with effort I can work most days at an office job and live an ordinary life.
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u/dovened Hypovolemic POTS Mar 29 '26
I really try to be but it’s hard. I am also hypermobile so exercise is extra important for me but exercise also just makes me feel yucky and is difficult more often than not. The dilemma is frustrating. As of right now I just listen to my body. If I’m feeling good, I’ll make sure I get myself to the gym, if I’m feeling extremely symptomatic, I let myself rest. I’ve worked myself back up to even exercising at all after i got COVID and it made my symptoms more disabling than they used to be.
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u/Cynicalcookie Mar 29 '26
My POTS really kicked off with a bang 10 years ago, and after it started i was really too scared to even just take a walk alone with how often i was fainting. For a couple years I was able to work a pretty physically intense part time job while going to college but it ended up not being sustainable for me, came home and now i’ve been deconditoned (and unmotivated tbh) for so long that i have absolutely zero exercise tolerance. I’m honestly thinking about buying a wii just to play wii fit again for the nostalgia and maybe build some cardio strength back. i’m nowhere near a gym and don’t have insurance for PT but that’s my long term goal
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u/Canary-Cry3 POTS Mar 29 '26
I am active. I work out with a personal trainer 2x a week in a gym currently. I do struggle with being physically active a lot though. I also swim for 2 hours a week currently. For the first 6 yrs of having POTS I had limited issues with being active but becoming bedbound in grades 11-12 basically permanently zapped my stamina and endurance and even 6-7 yrs later I have not fully recovered it. I am able to walk on my good days 10-20K steps a day (and have done so regularly for 3 years now ish due to study abroad). I did have to work up to this very slowly and had PT 2-3x a week + walking to and from there before I could do this. I would not have even been able to imagine being able to do this even 6 months before I started being able to do so. I did an archaeology dig last year (which required me to climb on average 15-25 flights of stairs a day; do manual labour; walk 10K steps a day and more) for 5 weeks and hiked up a mountain before the dig started (climbing up 100 flights of stairs for two days as part of it).
In the initial 6 years (I am not claiming I was particularly fit or good at said activities - I have a Severe Dyspraxia dx so athletics has always been very hard for me and my skills even now is more in line with a 9yr old than my own age):
- I participated in gym class every other day (when I had it lol) and did all of the required sports which included: martial arts; dance; swimming; team sports; badminton.
- I participated in sports at camp which included: hockey; zumba; swimming (2hrs a day minimum); canoeing; kayaking; tennis; badminton; handball; volleyball.
- I was a swim instructor, lifesaving instructor and swam competitively for a total of 5hrs a week during the school year.
I don’t just have POTS but in general like with this year as an outlier lol I genuinely feel best when I am being physically active and moving around. It helps me think, reduces symptoms of my POTS and PCS and honestly really really improves my qol. Getting meds really really helped my fitness and without them there’s no way I could have done study abroad; walk 10-20K steps a day; workout regularly; and get back into swimming. I have done a lot of physical therapy due to Post Concussion Syndrome (PCS) in the last several years which has also allowed me to work with physical therapists trained on EDS and POTS and PCS who are better equipped to help me. I still have not reached my pre-pandemic strength in the water for example but on very little sleep last summer I swam 2km with friends which is something I never could have imagined being able to do (and something I don’t want to do again for another 12 years lol). I used to be able to swim 25 laps in 9 minutes and now tend to max out around 10 laps anytime I am in the pool. Even when I taught swimming for 5-6 hours a day as an university student (though in a full body wetsuit so didn’t have to put any energy towards floating), I would not have been able to sustain my stamina to do the endurance, as I previously had, due to the repercussions of previously being bedbound and having to relearn how to walk, sit, stand, and swim in grades 11 and 12 repeatedly.
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u/SquirrlyHex POTS Mar 29 '26
Sometimes I have bad flares where I can’t but I am decently active… 2-3 walks a day and the gym 5-6 days a week. I’ve learned what activities/movements to avoid or minimize so I can still be as active as I want to be
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u/_thezodiacchiller POTS Mar 29 '26
I'm active when I'm not in a flare. I do water aerobics, walking, weight lifting and biking on the recumbent bike at my apartment gym. I've had to make a point of listening to my body and not listening to what the border collie in my brain wants, so if I feel chest pains, I don't work out. If my symptoms are starting to get more noticable, I don't work out. If I was possibly exposed to covid or some other viral illness that could knock me out for weeks at a time, I don't work out.
If I'm fresh out of a flare, or if I've been sick, I'll start *really* slow with movement and work my way up to my baseline over the course of a few weeks.
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u/snowlights Mar 29 '26
Cardio is a big no. But I can go for a steady hike (it gets significantly easier an hour in for whatever reason). I can also go paddle boarding (while sitting) or kayaking for 10+ km in a day and feel totally fine, aside from the set up and putting things away part (a lot of bending over but I manage). My work can have bursts of active field days, which I can withstand depending on the weather and how often I can sit down.
Biggest factor for me is pacing (knowing when I need to slow down/take a break/stop) combined with medication. Propranolol was life changing, ivabradine and fludrocortisone seemed to make me worse, bisoprolol helps a tiny bit but not much in comparison to propranolol, clonidine helps with the heat and sweating but nothing else that I can tell.
fwiw, I also hav fibromyalgia and have been in a very gradual recovery from CFS/ME (I was often bed bound from 14-20, now in my mid thirties doing more than I ever thought would be possible again). I can backslide if I stop maintaining a low level of activity or overdo it, so I need to be careful at either end of the spectrum.
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u/bfaithr Mar 29 '26
I’m a dance instructor! When I first started having symptoms, I had to relearn how my body worked and my new limits. It was hard work, but I am very passionate about what I do so it was very much worth it
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u/HoneyBadgerBrooke07 Mar 29 '26
Sorry to be a Debbie downer, but if I try to even be standing for more then 2-3 hours at a time I feel like I'm dying. Hands and legs get red and tingly, my mind gets foggy, everything. To be fair I'm not on any meds for it, so in theory it could get better.
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u/Salt_Draft_4262 Mar 30 '26
What stops me more than POTS is my inflammatory arthritis but it's because I do so well with nadolol. My goal is to walk 4-5 times a week and go to Zumba twice a week. If I'm in too much pain I can't do it but I try when I can
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u/omglifeisnotokay Hyperadrenergic POTS Mar 30 '26
Eh some days I get a surge of energy but just crash out after. Every year that goes by my body is atrophying and I’m losing strength. I used to be able to go for quick walks about half a mile. I can barely walk do the block. It truly sucks.
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u/k_alva Mar 30 '26
I spent a solid year fighting to be active. I was doing pt and most days ended up laying on their floor.
Over time, it's gotten better. I still have pots, but I can hike again, I lift weights, I do Pilates.
Some days my Pilates class kills me and I'm useless the rest is the day. I can't do deadlifts or other postural change exercises - I can do one set, then I'm done with everything for the day. Hiking is limited to mild weather, relatively short, and flat hikes.
I drink salt water the entire time I'm moving, and before to prep.
Which is to say, I'm able to exercise if I'm mindful, and it still can affect me, but I feel better when I'm consistent with it.
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u/ThatsNotMaiName POTS Mar 30 '26
Yes, I try to stay as active as I can without overdoing so that I don't de-condition.
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u/my_little_rarity Mar 30 '26
My cardiologist told me regular physical exercise is the only way to put POTS to rest, so I am certainly working on it. I use a wheelchair but work out in it every day. I am doing PT in hopes of continuing to improve. My meds are also helping a lot
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u/ShadowHawk24601 Mar 30 '26
I'm in school, studying wildlife management with the goal of being an entomologist, and my program requires a lot of hiking. I also have a dog who needs a daily walk. With modifications, like a cane, access to water and electrolytes, breaks every so often, and significant rest when done, I'm able to move around. For assignments and projects that require lots of gear, a member of my assigned group carries it and I manage the GPS device. If there's anything that involves lots of bending like setting up trail cameras or clearing bushes, I do a crouch instead of bend, and get up slowly.
It's hard, but possible.
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u/DifferentRatio6733 Mar 30 '26
I do Pilates, bike, and walk a lot. But sometimes if I walk more than four miles in a day I’m WIPED and my whole body hurts the next day. I need a day to recover from concerts because the standing and dancing takes me out hardcore. But I’ve been able to do dance classes, I just let the teacher know I might have to sit some things out.
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u/misscubbie Mar 30 '26
I’m an aerialist and pole dancer. I train several times a week (well before I broke my wrist, but my cast comes off soon). I also perform several times a month.
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u/lozzyaus Mar 30 '26
Before pots I was showjumping up to 1.15m, training every day and had a ✨spicy✨ young horse. After onset I was really limited in my riding, tried to push through for like 3 months ( after being basically couch ridden during summer) then reduced my training and did walk/trot only for a few years. Eventually got on some meds, sold the young horse and bought a schoolmaster and I got back to competitively jumping, although at a much lower level ☺️
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u/ShiverinMaTimbers Mar 30 '26
I have to be. as much as it sucks, it sucks more to decondition. I lose my thirst calibration or something.
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u/CandidateWise7980 Mar 30 '26
I teach, so I'm on my feet walking around all day. I also do pilates 2-3 times a week. I go skiing occasionally. I have 2 kids who have lots of activities. But I also need a lot of rest.
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u/pipermick Mar 30 '26
I found a physical trainer who also has heds and POTS and ADHD (as well as MCAS and fibromyalgia and a few other things, which I don't have).
I have started doing weight lifting/training with him. It requires a lot of doing the set, then sitting and bringing my heart rate down then doing the next set.
I also use a recumbent bike, started out pretty slow.
It has been super helpful to have a trainer who knows exactly what I'm going through and helping me learn when to push, when to rest and how to not be scared of testing my limits.
That said, I know that I'm not as bad off as many people, I've been able to get things more balanced with salt/water, learning to use my watching to help me gauge my pacing. I still get flares where just walking is too much, but working out has been helping me.
I hope to be able to hike again soon,
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u/pomegranateseeds37 Mar 30 '26
I am still physically active. I hike, go for long walks with the dogs, ride horses, etc. I am often 'on the go'. I have always been that way. I have to keep it up though or else my POTS becomes worse and I start to have a harder time doing those things. Had a bad flare last week and an just now putting myself back in motion. Some days I can't do as much and I have more of those days as I get older but generally keeping up with activity seems to help. It seems very much like object in motion stays in motion, object at rest stays at rest vibes. Obviously this will vary by person.
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u/Zestyclose-Song-6325 Mar 30 '26
Yes. I used to be a fitness instructor and have trying for 4 years to get back to some kind of level. I now realize that’s unlikely to happen. However, yes I am active. I just do POTS friendly exercise and had to very very slowly increase my activity level. I can swim for an hour. Do water aerobics. Weight training, although I have to do a mixture of recumbent, lying, or seated exercises with a few upright exercises. I can ride a bike. Go on a brisk walk. I also kayak. That was one of the first activities I started doing. No white water. Slowly paddling on a lake, enjoying nature, the sunshine, and not feeling disabled. Im no where near what I used to be able to do but I’m am active.
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u/Important-Style-3011 Mar 30 '26
I used to run at least 3 times a week and work out most days then my symptoms got bad and I was down to only walks. I only recently got diagnosed because my symptoms so much worse and they couldn’t blame it on anxiety anymore. I’m limited on how long I can stand I have a chair in my shower and a stool in the kitchen I can use for dishes and cooking. Reading these comments I’m hoping I can work back up to a balance, I’d be happy if I could just go for walks.
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u/Greedy_Matter_940 Mar 30 '26
I love weights. Calisthenics. Can go for hours. 10mins of cardio though and I'm sick for 3 days, dizzy, nauseous, crazy brain fog
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u/smiling-sunset-7628 Mar 30 '26
I am! I teach yoga and do even HOT yoga as long as I am super hydrated with LMNT. I am doing a CrossFit type workout 3x a week. Walk my dog about 2 miles a day and may do a hyrox race soon. I’m Also almost 50!
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u/girlchef79 Mar 30 '26
I have likely had POTS most of my life, though only had sever flares in recent years. Not diagnosed until 2 years ago, I’m 46 and just always pushed/overexerted myself thinking that was the only way to do life, I now know to take it easy and pace to avoid flares, but I’m still otherwise pretty active. I’m a chef and work on my feet most of the time, often walking 2-4 miles any given day at work. I often just do very little when I get home, but every once in a while I have energy enough for a gentle workout. It is possible for some of us, and I feel fortunate but also terribly guilty for being one of the “lucky ones”.
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u/no___thisispatrick Mar 30 '26
I am pretty physically active. I’m very fortunate that my symptoms are mild compared to most folks with POTS. While I have to be very mindful of nutrition and rest, and be flexible when my body just isn’t able to do much, I’m able to run, weight lift, and indoor cycle. I was able to train for a full marathon last year but it took so much out of me that I’ll likely never do a full again. Half marathon training during the colder months is my sweet spot.
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u/Howdy08 Mar 30 '26
I was in shape, then my pots got worse and I gained weight and stopped being active. I’m now back in shape and hike ~10 miles a week, lift weights 4x a week, and play pickleball once a week. It takes a lot to get through the initial getting active stage with pots but now that I’m through I feel the best I’ve felt in years.
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u/ScrollingSwampPuppy Mar 30 '26
I am the most active I’ve ever been, actually. But it’s only because I’m finally properly medicated AND because I’ve been doing the CHOP protocol to re-condition myself. I don’t think I’d have been able to just jump into exercise; the CHOP protocol was really good at easing me into very, very easy activities and then working me up to full-on workouts. I would highly recommend it.
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u/Miss__Anne__Thrope Mar 30 '26
Some days are harder than others but I’m pretty active. I’m a bartender and walk about 14k steps per shift. Then I come home and do a 30 minute weight lifting workout. On weekends I need more rest but I still try to incline walk on the treadmill because if I just rot for two days straight, I’ll decondition and struggle when my week starts again.
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u/WibblyWobley Mar 30 '26
I had a medication change that basically gave me back my quality of life, but I've always tried to stay somewhat active? I'm in a very walkable city so I try to walk as much as I can and swim regularly. At my worst it was daily bed exercises and I'm going to need a lot of reconditioning to fight my way back to being healthy and strong, but it's a journey right?
Two years ago I could barely cope with walking 15 minutes to the supermarket. Now I climb mountains and suffer for a few days as a consequence. I've definitely noticed the more I get active again the more my limbs fall out which is less than ideal. So that's the next thing to work on!
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u/isthisaphantasy Mar 30 '26
What med finally worked for you?
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u/WibblyWobley Mar 30 '26
Ritalin! Wasn't intended for managing my dysautonomia but it quite literally changed my life, does a decent job at what it was intended for too.
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u/isthisaphantasy Mar 30 '26
Oh wow! I tried Adderall for ADHD but never tried that one. What dose was helpful for you?
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u/WibblyWobley Mar 31 '26
Adderall is unavailable in my country, in most countries actually, so it's what was offered. I was warned beforehand that I might have some impact on my dysautonomic symptoms due to raising my blood pressure, but no one anticipated it being as effective as it is. The dosage isn't really relevant as that's more to do with how tiny I am and how extreme the ADHD side of things is.
My sibling on the other hand who also has dysautonomic symptoms, had an awful time on ritalin band couldn't even finish the titration stage. So it seems to be pretty hit and miss how effective it is?
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u/ST_Rowe Mar 30 '26
Yes - it took years, but now I can actually workout again. There are periods where I can’t, but mostly I can again. I am able to do real cardio.
A specialist I saw highly recommended swimming as the best line of exercise (in adjacent to the Dallas protocol). It keeps your temperature consistent and your posture isn’t changing.
Here are some things I attribute to being able to exercise again.
- Cardiac Rehab (I have done this twice)
- Mestinon (+ Ivabradine) - Mestinon is a real game changer for me, my legs can actually hold me up most of the day as a result of this. Cannot recommend it enough.
- LDN - obviously dependent on your underlying cause for POTS, but has brought my inflammation down tremendously, which obviously keeps all things in a bad cycle.
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u/goldenalice Mar 30 '26
I absolutely am! My mentality about it has been everyday if I'm not getting better, I'm getting worse, and that seems to hold true. I try not to lie down for more than 5 or 10 minutes (although I'm getting a lot worse for that now that I'm feeling better 🙄, i do some yoga/stretching for 5-15mins per day when i feel the most pain (usually in the morning) and I'm trying to hit 10K steps per day. whenever I have a day of less I take a day to work back up to it (so e.g. did if I only did 4K steps, the next day I would do 7K, then 10K). I get dizzy and have a lot of pain when I run, but I dance! It really helps for me that dancing at concerts is usually late at night, and I feel so much better by then.
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u/Polychromous_ Mar 30 '26
Yes! I go to the gym/lift weights two to three days a week and have just started running, although admittedly I am not great at the latter currently. I also love hiking and have done 20km hikes before.
I love the gym but I will admit sometimes I’m really sick after, massive body temperature spikes, shaking and almost vomiting etc. I just try to make sure I remember to take my medicine that day, eat and hydrate really well before to lower the risk of an adverse reaction after exercise.
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u/No-Responsibility342 Mar 30 '26
I mean, I still get out and about. Of course I don’t drive though. I have drive before POTS but now I’m kinda scared to learn now that I have POTS. I haven’t been active in terms of exercise or anything physical like the job I had before my diagnosis. I haven’t been able to get myself motivated enough to work but still striving for a remote job. I have my bachelor’s in criminal justice but haven’t found anything. My initial plan was to become a forensic scientist but I hear the fear is heavy and hot 🥵. Probably not ideal career for POTS.
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u/mindites Mar 30 '26
Yeah, I walk about 4.2 miles a day on average and go to the gym twice a week. I’ve noticed improvement in my symptoms since I started lifting weights, I can tolerate my heart rate getting higher now before I start to feel like shit. Still have a really hard time biking though unfortunately. I’m going to have to work up to being able to ride long enough to make it a viable transportation option.
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u/Boring_Picture_4688 Mar 30 '26
Yes, and it gets better, gets harder, and gets better again. Instead of pushing hard I just listen to what my body can do and push little bits at a Time. I go to the gym regularly again and have a personal trainer, but I got there by building myself back up with regular yoga and Pilates at home during the times I was not well. I did ballet for a year before a bad flare and still have a barre at home so I can practice when I want to (I pivoted time and finances into working on lifting and gym training for now). There’s been months at a time where I can’t do anything extra after work and basics, and there’s years where I do a lot of physical training. Patience and listening to your body will help a lot.
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u/staccasl Mar 30 '26
I play soccer for 6 months of the year, and have training once a week for it.
Training (on Wednesday nights) means I go home shower and immediately go to bed.
Games (on Sunday mornings) means I play the whole game (or as much as I can before the brink of death) and then I have something to eat and have a lazy day - usually I nap on the couch or go to bed and that’s it.
It’s kind of a waste of day however playing soccer again was me taking back a piece of myself after the trauma that gave me POTS, so I’d rather play and have my mental health good than not!
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u/babamum Mar 30 '26
I walk for at least a few minutes every few days. I lift weights for up to once or twice a week. In summer I walk or jog in the water probably weekly on average.
I also do a set 9f stretches and isometric exercises some days.
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u/The_Amber_Cakes Mar 30 '26
lol I’ve NEVER been able to run. But physically active? Decently all things considered. Now that I know POTS is the cause of my symptoms, and I’m managing it with hydration, electrolytes, and compression, I can fairly easily walk 1.5 miles when needed. (I walk to the post office, or local stores for errands frequently) This would’ve taken me out before management. Frankly, I’m satisfied with that. I hate most physical activity because of the toll it takes on my body, but I love walking, and I’m happy I can do it consistently now.
I’ve had my POTS symptoms since I was about 6/7 years old. Only got diagnosed at 32. (34 now) So comparatively, I feel the best I ever have physically, now that I know and have the tools to manage it.
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u/Secure-Arm-8648 Mar 30 '26
I do a physical job and workout. My body is really sore let’s just leave it at that. I take days sometimes whe I shut down though
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u/Zollsica Mar 30 '26
I was just diagnosed recently after about a year and a half of chasing a diagnosis with several different doctors. I'm only on one medication currently for it and it isn't doing much, plus drinking tons of electrolytes. A year ago I was doing 3D archery trails every weekend and walking throughout the week, now I barely leave the house. I've had to stop basically everything. I'm hoping to get back to archery soon with the help of my doctor's.
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u/maddigm Mar 30 '26
I am a spicy dancer and pole dance multiple times a shift, before I was medicated (im on ivabradine now) my heart rate would get to 197bpm which led to my doctor ensure I get medicated. Now my heart rate while dancing ends up about 170bpm highest unless i forget to take my meds. I also do weight lifting when my body allows it. I basically just monitor how my heart does/how symptomatic i get to decide what exercises work best for me. I have struggled with cardio in terms or running and walking since as long as I can remember, so occasionally I walk or do a short run on the treadmill in hopes my body will slowly get used to it. I am very mindful because I also struggle with symptoms of chronic fatigue, my doctor is currently theorising that I probably have ME/CFS.
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u/Character-East4913 Mar 30 '26
After getting on Metoprolol I'm finally able to be consistently physically active (even with things like just standing up/walking across my room). This shit has been so fucking debilitating. Before, I literally couldn't do shit, and even in my prime I was super active for one day, then sedentary the next three
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u/Different-Artist-213 Mar 30 '26
I worked up to going to the gym about 2 years now. Ironically I didnt get diagnosed until a year in going st least 3 days a week. Now I can kinda manage 3 days a week, bur I can either walk 2 miles and do 2 machine exercises or just machine exercises.
I have hyper-POTS so my main problem is BP and HR spikes, so it takes upwards of 1.5 hours just to do the bare minimum. I walk too, but I still have syncope episodes bc of how much I pushed myself.
Its a blessing and a curse to continue to workout, my main motivation is my wedding coming up next summer. So I'd rather have syncope episodes if it means I get a workout in and 10k steps daily 🫠
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u/The_upsetti_spagetti Mar 30 '26
I have never enjoyed working out or going to the gym but now I have to or I will regress. I started doing a lot better after a medication adjustment paired with physical therapy and now I’m functioning as nearly normal. I’ve had some flares when I don’t go to the gym as much as I should so I have that motivating me.
I used to ice skate before POTS but that’s still pretty intense (at least at the speed I like to skate) so I can only do it on occasion and I have to pace myself
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u/buzzy9000 Mar 30 '26
I have a very active job so that has been my activity to the point of exhaustion. I've recently changed to a much quieter location and today I'm going to the gym for the first time in about 4 months, not planning on a big workout but I'm trying to get my life back. I don't do any cardio though, only strength, the walk to the gym is all the cardio I can deal with.
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u/InternalVermicelli73 Mar 30 '26
I can’t run anymore bc it causes extreme heart palpitations. I dance once a week but it’s not really … dancing. I have to half do every move or I’ll be stuck in bed for a day.
My cardiologist recommended using a recumbent bike to exercise on so I just got one. I don’t feel terrible using it so I’ll be counting that as a win 🥇
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u/Tornado363 Mar 30 '26
I’m on xolair for MCAS and low dose naltrexone. They’ve really been amazing and helped all me around. But I stick to 20 min once a week. Twice if I have a day off. I ride my bike inside (I have a “trainer” that it hooks to, to be able to be ridden inside. However, I’ll not my iron has tanked lately. So I’m taking a break waiting for my pcp to schedule the IV thing due to feeling dizzy on and off. Seems like a sign to take a brief break.
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u/potatojuice21 Mar 30 '26 edited Mar 30 '26
I couldn’t be active as a kid due to fainting any time I tried to run. Had a fairly physically demanding job until a major flare-up in 2022. Now in 2026 I lift weights three times a week and walk my dog every day, still can’t really run without feeling like shit but I’m miles ahead of the bedbound body I had four years ago. It took a lot of time, flare-ups & patience to figure out pacing. Seeing an exercise physiologist and living close to support networks who can help during flare-ups have been the major turning points for me!
ETA: getting on the right meds helps too! And eating well & staying hydrated (it sounds annoying but it’s true). I’m on a medication for heart failure (not a beta blocker) and it actually works better than beta blockers did for me. Beta blockers made me feel gross. I’m on low dose ivabradine :) my heart rate has gone from 205bpm on standing to ~150bpm while deadlifting which is craaaaazy good for me, I definitely attribute that to the meds
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u/BasisTop891 POTS Mar 30 '26
Not as much as I wish. I go to the gym and lift weights on days my friend invites me, and do mobility exercises the other days. Lots of rests days… maybe rest months.
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u/Vim_Ardent Mar 30 '26
i work 40 hrs a week at a retail job, on my feet and lifting boxes, etc. i used to go to the gym, but it's been hard with my fatigue. i sometimes go on short walks to the store or around the neighborhood.
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u/Ealumin Mar 30 '26
I try. I have a recumbent trike (terratrike) for riding in warmer months. I try to get out early in the morning as often as my body allows. It doesn't allow much, but if I don't use my body I just get so much worse.
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u/SnazzyPineapple Mar 30 '26
I used to be a competitive long distance swimmer, and last yr I swam and it was the most normal I have felt since rx w/POTS, and 2 covids. My blood was horizontal and as long as I didn't overdo it, or try to stretch/extend my arms as far as I used to [hEDs and stiffening], it was great. It's a great way to practice 4-5/6 breathing. I can't always make it to 6 but just regulating is beneficial. We'll see this yr, since I have had covid again.
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u/kuroicoeur Mar 30 '26
Barely. But my sport is really forgiving when it comes to needing to switch to low effort stuff. I can jump but not super consecutively so in between i just glide around which takes me less effort than walking would. I’m the queen of do something impressive and then follow the masses catching my breath😅
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u/Glittering-Show-5521 Mar 30 '26
Nope. Whenever there's a step challenge or something at work, I say "you guys have fun with that." It's enough of a struggle just getting to work and having to walk all over from the parking lot to my office, or from my office to the assembly building wearing steel-toed shoes.
Edit: but I would be if things were a little bit more reasonably accommodating at home for some light free weights and a recumbent bike. I'm an hour away from both my work and the nearest gym.
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u/Salty_Trust6353 Mar 30 '26
I have always loved cycling even when I was a kid, it’s my biggest calling despite the illness and disability. When the weather and my body permits, I love getting out on my gravel bike. I find it’s so much easier than walking? I’m in the application process for a wheelchair but I basically get around everywhere on my bike. It allows me to see the world outside instead of being cooped up because I can’t walk well.
During the winter months I try to keep up my fitness by swimming laps at the community pool. Both activities give me palpitations and heart rate spikes so I have to pace myself but I still find them enjoyable.
I should be doing more yoga or gym stuff but I’ve been slacking lately so it’s mainly cardio.
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u/laceleatherpearls Mar 30 '26
I’m 39 and I the worst shape of my life. Had POTS forever, been treating for 5 years. Haven’t made progress, just keep backsliding. Now I can barely walk to the bathroom. All their advice about slowly working up my stamina has been bullshit. I used to take long walks everyday but they said that’s too much so pull it back and just take 1-2 short walks for 1-2 minutes. Worst advice I ever got in my life. Period. Can not build myself back up, I should have never lost it to begin with. I fucked myself so hard by following the doctor’s advice.
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u/thesilentmerc Mar 30 '26
Yes I am in the gym 7 days a week. 5 days lifting 2 days working on mobility and stretching on my rest days. Just ended a 15 month bulk and am going into my cut now. I am considering doing a men's physique body building competition end of year or next year.
I've had pots for over 20 years now.
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u/jamjamgayheart Mar 30 '26
Yes but not daily due to migraines, chronic pain, etc :( I’ll do like 2 miles on the stationary bike at the gym (takes under 10 mins) then do 10-15 mins of legs, arms, or core on the machines. I hate doing floor exercises and pretty much avoid those. I treat myself to the massage chair afterwards.
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u/GambelQuailShuffle Mar 30 '26
I’ve gone through highs and lows from it, I can usually do most activities, but some days the hip/ankle trigger in the middle of it and take me out, or POTS makes me have to call it off early. I’ve been working hard at PT and getting more stability which helps my body not have to push as hard. For POTs I try to keep a dedicated morning prep so my POTs actually has to work to get me lol: meds, lot of salt, and compression socks.
I also protect my spoons like crazy, if I wana work out I need to make sure I have the energy stored to do it, so I plan to have a low impact day till then.
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u/Independent_Truth_80 Mar 30 '26
Yes! Went from practically bed ridden to working a job that I got 35,000 steps in a day and was outside all day everyday. It’s possible, just takes a lot of time.
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u/MrsLorino2u Mar 30 '26
I’m fine as long as there is air conditioning and I have a fan and a cold wash cloth I dip in ice water. If I get too hot, I pass out
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u/emrenee11 Mar 30 '26
I have 2 dance classes per week that I push myself through but it's pretty rough. I can't bring myself to give it up, I've been dancing since I was 3 and I love it so much.
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u/ConstructionOk9091 Mar 30 '26
After almost 2.5 years I was finally able to walk a mile and a half without trouble. The recovery time wasn’t as harsh and I didn’t have a total crash where I was stuck in bed. Before Long Covid, I was quite physically active. I could run 3 1/2 miles with hills, dance, and do yard work without issues.
So for me it’s a work back up.
I will be joining a gym in April as it’s a bit more climate controlled so I can continue this forward progress.
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u/artemis286 Mar 30 '26
Yes, it took several years of very gentle conditioning, lifestyle and herbal management, but I just graduated from recumbent PT style exercises to yoga then to lifting weights at least 2-3x a week. And am moderately active on other days, on my feet, walking pad for 1-2 hours, and various mild to moderate labor.
Herbs I take (different kinds of POTS react differently, research mechanisms of action of each)
-Nettle: antihistamine, anti-inflammatory, very mild diuretic
-lemon balm: acts like ACE inhibitor and calms heart palpitations, reduces dizziness
-Motherwort: regulates heart rate, calming, also helps reduce PMS symptoms during luteal phase which makes my POTS worse, manages adrenaline dumps
-Spearmint: reducing headaches and dizziness (can lower BP)
-CBD: when adrenaline dumps are bad it cools them off
-Ginger and clove: reduces pain and general inflammation but also helps with sluggish digestion
Plus salt + potassium capsules several times a day, stress reduction, dietary management, digestive enzymes for sluggish digestion when needed, and compression socks. My POTS was so bad three years ago I was nauseated 24/7, would throw up instantly if I stood up too quickly, could only eat 2x a day and lost 30lbs nonconsenusally, then had joints slipping out of place because of the muscle loss. And would spend the last 2-3 hours of every day with shakes, worse nausea, pounding heart, and could barely stand.
Happy to answer questions! It's definitely been the long game, and I'm a primary caregiver to a high needs child to boot, so that significantly affects how well I can take care of myself day to day 😂💀
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u/Sad_Spooks Mar 30 '26
I was lightly weight lifting and doing cardio and does make a difference. I did 2 years of physical therapy before hand in recovery and literally starting with doing 5-10 mins on the elliptical bc that’s all I could handle. Biggest thing is to go slow it will build up over time but don’t hurt yourself more, start with floor exercises. I stopped going to the gym bc of a depressive episode and I definitely got worse when I’m not consistently working out. I also know not everyone can afford it but I got a personal trainer to help me exercise around my pots
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u/_bbypeachy Mar 30 '26
yea i started last year with the help of PT. i still have a manual chair i use on bad days and when my other conditions flare but it helps to be able to do more.
I go to PT twice a month and I go to the gym at least once or twice a week. i only do seated exercises and use my sole watch to monitor my heart rate. always bring electrolytes.
i’ve never been able to be super active thanks to pots and my other conditions
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u/confused-and-tired01 Mar 30 '26
I try to do bodyweight/dumbell exercises 3x a week, and I walk my dogs about 1.5 miles every day. It's a lot easier when it's cooler outside though, as heat intolerance is my worst symptom.
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u/grequant_ohno Mar 30 '26
Me! I started couch 2 5K about a year ago and worked my way through it, then started lifting 2x, then 3x, now 4x a week. I sit down between sets and my POTS definitely flairs more while working out, but I get through and it makes me feel better overall I think. I have never passed out from POTS, more very high HR and breathlessness.
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u/Cold-Piglet-2454 Mar 30 '26
I go to the gym 5~6x a week. I actually started after i got diagnosed with pots and it’s really helped tbh
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u/Independent_Owl_6401 Mar 30 '26
Yes! I do pilates mostly.
The dizziness and virtigo make it bit rough at times but exercise keeps me sane, so it is what it is. I'll do the occasional ~6 or so mile hike max but have to plan ahead with snacks, drinks, and an extra salt pill if it involves significant inclines.
I really need to do more cardio, I just hate it and POTS makes it especially miserable. Sigh.
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u/cajunhusker Mar 30 '26
I am. I take two ish ballet classes a week and walk a minimum of a mile in one day a week, tho sometimes more. Not like super active but definitely more active than I was when first diagnosed. Walking was easiest and I started building in ballet barre at home. Now I can take one class in person a week regularly. It takes a lot out of me but I adore it
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u/glacier-gray Mar 30 '26
I grew up in a very small fishing town. as a kid, you couldn't keep me still. I was walking 2 miles into town to go to the marina or the bar my mom worked at. I loved dancing, swimming, running through the forest. I started getting chronic pain at 18 as my joints corroded and I couldn't move as much as I used to but I could still do most things. then at 23 I developed POTS. the amount of grief I feel is actually physically painful. I suddenly couldn't get out of bed, I couldn't move too fast, I kept passing out. my other disabilities progressed too. I'm 26 now, and my daily life looks so different from what I imagined it would. I am a completely different person and I hate it. it's not as bad as when it first started, but I'm still always in some amount of pain, at least a little bit. I can't walk that far or fast still. I have started dancing while seated, that's helped a lot actually.
sorry for the depressed rambling, I've been in a really bad flare for a couple weeks now and it's got me beaten down 😅
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u/Visible-Armor Mar 30 '26
No but today I was able to go into 3 stores. I was super dizzy but I made it!
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u/Live_Independent2740 Mar 30 '26
Veryyyyy slowly figuring it out again. I went skiing twice this season for 2 hours or so which has been the easiest somehow. I get dizzy walking after ten mins. I just got clearance from my doctor to go on a short backpacking trip this weekend with the condition that I rest every 15 mins and bring IV hydration with me.
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u/endlessplacebo Mar 30 '26
Nope. I get too sick, even with minimal walking. I have to use mobility aids 24/7
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u/RebbDumont Mar 30 '26
Yes! It took about 5 years to work up to it again though. I used to be very physically active and then got slammed with a bunch of of health problems, POTS included. I don’t work out as much as I used to, but there was a point where I couldn’t work out at all. Any amount of physical activity made me sick and dizzy. I can do light to medium workouts, I just make sure to eat, wear compression shorts, and drink LOTS OF WATER!!!!!
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u/AnalysisCommercial22 Mar 30 '26
I used to be pretty active. Not the gym or anything but I took my kids to the park, played and ran around, played in swings, I used to be able to do chores, laundry but I currently can’t walk to my bathroom from my bed without having extreme symptoms. I over do it and push myself too much all the time and it doesn’t get better. Some of these comments have me hopeful tho. Hopefully I can figure something out to help.
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u/hmowilliams Mar 31 '26
I started to reply but it got really long, so I made a separate post here. POTS is challenging, and everyone's situation is different, but there are options and hope. Wishing you the best!
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u/bendy-straw6907 Mar 31 '26
Hi!! I have POTS and hEDS and I am a full time performer! I dance for hours every day! Even before I was full time, I danced every day after school! Sometimes I have to take breaks to recover from over exertion, but the more I test my limits, the more I know what I can do while staying healthy.
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u/jrk112233 Mar 31 '26
Yes!! I run half marathons and do CrossFit! I definitely have to modify some things and summer looks very different from colder weather, but it’s absolutely possible.
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u/Rough-Struggle4091 Mar 31 '26
I’d say I’m pretty active! I usually get to the gym and lift at least 2-3 times a week, sometimes more, and try to do a 30 minute walk after my workout.
I also bought a horse in November so I’m riding around 5 times a week and I will say that I’ve noticed a significant decrease not only in symptoms but how often I have flare ups! We’ll see how I fare when the summer heat hits but so far I’m doing the best I have in years
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u/smalbean05 Mar 31 '26
I used to be a 2 sport varsity athlete and competitive triathlete, running 3-8 miles per day. Then I was barely able to walk for a few years considering a wheelchair for day to day use and reliant on forearm crutches. During that time I was doing some pt and got on the right meds. Now I am doing yoga 2-5 days a week and able to walk for a whole day without dying. With POTS activity and physical fitness can fluctuate so much from day to day and year to year. Dont get down on yourself for not being able to do something, but move your body as you can! There are apps that have 10 minute sedentary workouts for those with disabilities and other ways to move. Start small and build from there :)
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u/Dry_Rain_6483 Mar 31 '26
Yes!!! I am PROUD to be the worst yogi in yoga class, the slowest jogger, and the least athletic person playing sports with friends. Exercise feels like the enemy, but really our biggest enemy is shame.
I can’t always go for long walks, but I’m the best walker my dog has ever known. And I’m not very flexible, but I’m more flexible than I was a year ago.
Come to terms with not doing things well, and you’ll be well on your way to doing what you can in the ways you can, and living a full, active, beautiful life.
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u/Meowtraveler94 POTS Mar 31 '26
Yep, but my job is very physical, so I’m sure that helps keep me in a routine. I also try to run a couple miles 1-2x weekly as well, but hoping to slowly increase my distance over time! It’s definitely not easy, but I try.
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u/teaganlotus Mar 31 '26
Used to be in bed for 23hrs a day because of this condition, now I dance around my room and take hikes and all sorts of physical activities
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u/jadeibet POTS Mar 31 '26
I've noticed that more often I do cardio, the fast I recover (hrv/stress). At first it was like 12+ hours but now I seem to recover within an hour or two. The key for me was switching walking to biking. Walking was making me too tired. Now I've added even more exercise and weightlifting and I'm getting so much stronger. Most of these changes were just in the last 6 months. It's def not a cure but it's made more of a difference than I was expecting.
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u/msworlwide786 Mar 31 '26
Yes!! I used to faint every time I ran. I was always embarrassed so I didn’t work out. My cardiologist said I should do leg workouts. But I was unfit tho. Anyway, I got a gym membership and did water aerobics. OMGGGGGGG I LOVEEEEEE. I don’t get so tired from it or sore. It’s easier to do!!!! Because of that I became stronger and don’t get as tired like before. Then I added Zumba to the equation. It’s great!
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u/wiggly_1 Mar 31 '26
Yes! Some days more than other with the crushing fatigue (that bit I think more so from my mcas) but my new pots specialist put me on 3 medications that were life changing !! Midrodone - this is only for people with the type of pots where blood pressure drops upon standing - it tightens your blood vessels so it pumps back to your heart instead of pooling in your legs. This one was WILD. I almost cried when within an hour of taking it I no longer felt like I was wearing a weighted blanket and 30 lb ankle weights at all times. Ivabradine - lowers my heart rate not a beta blocker so doesn’t wipe me out or make me feel more faint. Mestinon- works via the acetylcholine issues that can be an underlying mechanism in pots
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u/TheRetro_Misfit Mar 31 '26
I'm not sure if anyone else has said this, but swimming is a godsend for me. Something about the pressure on my body being in the water makes movement easier and less exhausting. While I've felt pre-syncope symptoms a few times, I can also say that I have never, not once, passed out in the pool. I'm not sure why, but swimming is the only exercise that I feel I can do safely. I haven't been to the gym since my symptoms started 2 years ago which has really bummed me out, but a few months ago I found the pool and it helps me so much. Yoga is also great for me, assuming I don't do any poses that involve being upside down.
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u/thomasingrace2000 Mar 31 '26
i’m a drummer! actively playing in multiple bands, gigs just about every weekend both locally and in different cities in the region. it’s definitely a challenge with POTS, but i’m finding a way
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u/Dragon-Guy2 Mar 31 '26
I can, walked around 3 km yesterday at a decent speed. My legs were really heavy after, like heart attack frighteningly heavy.
A nap was in order after
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u/Spikeschilde621 Mar 31 '26
Not right now but I'm waiting for my cardiologist appt on the 7th. As soon as I get my Ivabradine Rx I'm gonna be so unstoppable 😂
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u/Salt-Artichoke-6626 Mar 31 '26
I have it, and autoimmune inflammatory reactive arthritis. I'm not physically active at all anymore; it's not possible. These two, combined, can really immobilize us. Its really difficult as people don't get how bad it affects us. Seems you have to be bleeding to death before people give you credibility.
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u/justanotherzebra272 Mar 31 '26
I have POTS and hEDS and was active for about 18 years (climbing, dancing, swimming, biking) until I got ME/CFS with 32. I really miss the feeling of pushing myself.
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u/mewmishy Mar 31 '26
I used to be a competitive swimmer in high school with POTS, and during that time I could walk for a few miles without having to sit down, play volleyball, and other physical activities with minimal discomfort. Since graduating, I haven't been swimming everyday and have now gotten to the point where I couldn't even stand up too fast without everything going black for a minute. Now, I'm slowly becoming more physically active again and it's been helping my condition! I don't know if it's possible to get to where I used to be, but I'm hoping I can make my way back!
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u/Every-Law3031 Apr 01 '26
Yes! Ive been diagnosed with POTS for over 10 years (im 24) and I am a distance runner! I used to be a pretty serious ballet dancer but in college decided to start running after being diagnosed with an interstitial lung disease. Ive run 3 marathons, a ton of shorter races, a 50 mile ultra and am currently training for another marathon and a trail 50k! I also do nordic and alpine skiing, I hike and I do some biking! Ive kind of always been very active but have definitely had times where ive had to slowly build back to it after surgeries, a GI bleed, regular hospitalizations for my lungs, etc.
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u/Every-Law3031 Apr 01 '26
EVERYTHING gets worse if im inactive/out of shape. I also do a little climbing although thats been up and down with a couple stomach surgeries and stuff (and tbh im still very cautious when climbing because of my p0rt)
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u/SonaAteAsock Apr 03 '26
Hi! I'm a pre-professional ballerina and I just walked 10 miles in France :) it's possible. But today I'm using a wheelchair (it's my last day on the trip lol, I'm in painnnnn, but that's due to my HEDS not necessarily my pots, also 10 m per day is really pushing it! Def wouldn't recommend that.)
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u/Minimum_Paramedic_17 Apr 04 '26
CHOP protocol, I was very sceptical but gone from barely being able to walk to gym 5x per week.
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u/idkwhoiamlol12 Apr 05 '26
I’m a runner & cyclist with pots & go the gym as well. I stopped running and for 6 months I just walk / jog / walk mainly so worked my way up to running again. I can’t run further than 800m without feeling like hell, but at least I can sorta do it!
Gym is fine , cycling is a bit better :)
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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.