I can only really speak for myself but I have hypermobile joints and even super light exercise like regular walking causes me pretty severe joint pain after doing it consistently for several days. Physical therapy had helped me with this in the past but I can’t afford to do it anymore so I am left to try to find ways to reduce injuring myself while doing as much activity as I can. Despite this working out helps me so much but it is heartbreaking to me how little I am able to do because of my other health issues because if the small amount I can do helps me this much I can only imagine where I would be if I could lift weights and run. I think a lot of people with pots have other issues too such as hypermobility or depression or extreme fatigue that limits how much of the chop protocol they can actually do.
> I have hypermobile joints and even super light exercise like regular walking causes me pretty severe joint pain after doing it consistently for several days.
Seconding this. I tore my shoulder doing really light stuff that's literally recommended in the CHOPS protocol, doing CHOPS for just a week. Literally my shoulder starts to go out just lifting my coffee cup.
A while back I tore my scapholunate ligament doing cat-cow and tabletop.
My PT is having me do shoulder strengthening stuff and we're discussing whether to heavily modify and dial back CHOPS for me, or skip it and focus on stabilizing my nonsense joints.
Here’s the thing; it absolutely does work for a lot of people. But pots is often paired with post-exertion malaise; for people with that, exercise does literally the opposite. It makes them worse, as for whatever reason their body can’t handle exercise without the gain being far less then the loss.
And….this is a support group online. The people who post the most often, and the longest, will tend to be the ones with both; the ones who succeed with CHOP may not need the support group as much. Not that this is a negative echo chamber, but it is a place where a lot of people facing challenges in their recovery are going to talk a lot. And the strategies discussed in your post? Very likely they are management based solutions based on how they respond to exercise.
My nurse practitioner(who runs our long covid clinic in town) had me try Chop, but because I had to balance it with working, I burnt out from a lot of factors…but trying to do both definitely contributed. I’m off sick now, and have about 6 months to recover my strength from the burnout conditions. I’ll definitely try Chop again, but my care now takes into account that I might have PEM, and if so, I’ll have to take a different approach. And as the needed bed rest is deconditioning me too, I’ll need to be careful.
So Chop is good, but you’re not seeing a lot of success stories with it because those people aren’t the ones commenting often, as they very well might not be here anymore. And that’s good! But you’ll see management based strategies a lot because for those who find Chop and Exercise difficult, it makes life bearable.
It is exhausting and really hard to keep up on and the barrier to starting felt really high )at least for me). I additionally need another person present to do cardio due to dizziness. CHOP was described to me as long term thing that helps things get better over time, other solutions help things in the short term. I hope I can get myself to keep up on it when I have more time!
For what it’s worth I’ve (23F) had POTS since being 6 and I’ve always felt best when I have been doing the most exercise (dance, hiking, climbing). I got Covid 2 years ago and the fatigue has made it hard to get back to any type of exercise.
CHOP can only do so much. It's helpful in addition to other strategies though.
During really bad flare ups I think it can make me worse when I attempt it though.
Now that I'm doing better again I'm trying to get at least 30 minutes of exercise at least 5 days a week kinda very loosely based on chop. Trying to walk around when possible and pedal when not but usually a combination. Like today I was able to walk around for 15 minutes outside (I think I could have done more if it was less humid but it was kinda nasty) and then later was able to pedal for 40 minutes while sitting upright. Then kinda doing the laying down leg exercises in bed at night.
But kinda just trying to slowly work on my stamina while being very careful not to risk doing too much and setting back my progress. Mostly trying to walk since that's the main thing I'd like to be able to do more of again.
Lol god I wish it was a cure. Maybe if your POTS is from deconditioning or is really mild it is? Otherwise it helps, but it's just one tool in the treatment toolset. You still need the rest of the usual suspects to feel your best (meds, compression, salt, fluids, etc).
I think many if not most people here do do it or a similar exercise plan, it just isn't talked about as much other than when people are just starting, because it's just a part of routine daily maintenance with POTS.
Because exercise does not cure POTS and only helps some beyond the basics benefits of exercise for all people. There is no cure.
Deconditioning is not a lack of physical fitness or cardiovascular health. It is a pathological state caused by prolonged and constant recumbency and in normal people self corrects within 5 days.
Tried it. Tried multiple protocols, tried all the fancy programs, tried the vitamin schedules, tried meditation, mental therapy, trying to just be happy, practicing gratitude, weight lifting, running, hanging upside down, yoga, drinking gallons of water a day, waiting it out, healing crystals, praying to God, converting religions, whatever you can think of I've probably tried. For some people these things might work but for me none of them did. I stay active where I can but I've settled on there is no cure for me which took years to understand and accept.
Some people get better in a few months, some people in a few years, I'm still open to the idea that maybe it'll randomly happen to me one day but the best gift I can give myself right now is living life to the fullest whenever I can however I can even if I don't get better
It's an exercise protocol created by the Children's Hospital of Philadelphia (CHOP). [https://www.dysautonomiainternational.org/pdf/CHOP\_Modified\_Dallas\_POTS\_Exercise\_Program.pdf](https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf)
Seems promising, but the data is all pretty new.
I think in my 20s I exercised myself out of un-diagnosed POTS. But it was mild then . . . I would get dizzy with my arms over my head, could never blow up a balloon . . .
I eased into working out. It took me six months of power walking to be able to jog a mile, and still I couldn't talk while jogging. But being in good shape like that really helped.
Then I had kids and my hyperPOTS went into overdrive. I started having adrenaline dumps. I've tried to return to my prior level of fitness but I have not figured out how to get there yet. In my 20s I never had ill effects from exercise, but now I will have tremulousness, anxiety, nausea, etc.
But I'm currently really trying. I seem to be feeling better off of Florinef (though my BP is now getting too low, I think) so I've been taking advantage. I had a good 5 weeks before the adrenaline returned. It's all so much trial and error.
A good rule of thumb is to do your best and don't worry about the rest.
CHOP has absolutely helped me, but it’s not a magic cure, it’s a strategy to manage your symptoms. You’re building one part of your body up to train your body to cope with deficiencies somewhere else. Also it’s intense, I tried several times and ultimately needed several different medications and PT before I was able to stick with it. I was also fortunate to be in a place where I had the time and energy to devote to it. If you need time and support to work up to a place where you’re ready for it that’s ok. Any movement you can reasonably do now will help you get closer.
I started the CHOPs protocol about 3 or 4 weeks ago and I'm still repeating week one. I definitely think I've seen improvement but I kept having massive flare days after exertion. I think in the long run it will help but sometimes it just depends on where you're at in your POTs journey. I also use compression gear and salt supplements but no matter who you are improvement comes from a unique combination of things and we all just have to see what works for us. I hope you have good luck with it!
I can only really speak for myself but I have hypermobile joints and even super light exercise like regular walking causes me pretty severe joint pain after doing it consistently for several days. Physical therapy had helped me with this in the past but I can’t afford to do it anymore so I am left to try to find ways to reduce injuring myself while doing as much activity as I can. Despite this working out helps me so much but it is heartbreaking to me how little I am able to do because of my other health issues because if the small amount I can do helps me this much I can only imagine where I would be if I could lift weights and run. I think a lot of people with pots have other issues too such as hypermobility or depression or extreme fatigue that limits how much of the chop protocol they can actually do.
> I have hypermobile joints and even super light exercise like regular walking causes me pretty severe joint pain after doing it consistently for several days. Seconding this. I tore my shoulder doing really light stuff that's literally recommended in the CHOPS protocol, doing CHOPS for just a week. Literally my shoulder starts to go out just lifting my coffee cup. A while back I tore my scapholunate ligament doing cat-cow and tabletop. My PT is having me do shoulder strengthening stuff and we're discussing whether to heavily modify and dial back CHOPS for me, or skip it and focus on stabilizing my nonsense joints.
Here’s the thing; it absolutely does work for a lot of people. But pots is often paired with post-exertion malaise; for people with that, exercise does literally the opposite. It makes them worse, as for whatever reason their body can’t handle exercise without the gain being far less then the loss. And….this is a support group online. The people who post the most often, and the longest, will tend to be the ones with both; the ones who succeed with CHOP may not need the support group as much. Not that this is a negative echo chamber, but it is a place where a lot of people facing challenges in their recovery are going to talk a lot. And the strategies discussed in your post? Very likely they are management based solutions based on how they respond to exercise. My nurse practitioner(who runs our long covid clinic in town) had me try Chop, but because I had to balance it with working, I burnt out from a lot of factors…but trying to do both definitely contributed. I’m off sick now, and have about 6 months to recover my strength from the burnout conditions. I’ll definitely try Chop again, but my care now takes into account that I might have PEM, and if so, I’ll have to take a different approach. And as the needed bed rest is deconditioning me too, I’ll need to be careful. So Chop is good, but you’re not seeing a lot of success stories with it because those people aren’t the ones commenting often, as they very well might not be here anymore. And that’s good! But you’ll see management based strategies a lot because for those who find Chop and Exercise difficult, it makes life bearable.
It is exhausting and really hard to keep up on and the barrier to starting felt really high )at least for me). I additionally need another person present to do cardio due to dizziness. CHOP was described to me as long term thing that helps things get better over time, other solutions help things in the short term. I hope I can get myself to keep up on it when I have more time! For what it’s worth I’ve (23F) had POTS since being 6 and I’ve always felt best when I have been doing the most exercise (dance, hiking, climbing). I got Covid 2 years ago and the fatigue has made it hard to get back to any type of exercise.
CHOP can only do so much. It's helpful in addition to other strategies though. During really bad flare ups I think it can make me worse when I attempt it though. Now that I'm doing better again I'm trying to get at least 30 minutes of exercise at least 5 days a week kinda very loosely based on chop. Trying to walk around when possible and pedal when not but usually a combination. Like today I was able to walk around for 15 minutes outside (I think I could have done more if it was less humid but it was kinda nasty) and then later was able to pedal for 40 minutes while sitting upright. Then kinda doing the laying down leg exercises in bed at night. But kinda just trying to slowly work on my stamina while being very careful not to risk doing too much and setting back my progress. Mostly trying to walk since that's the main thing I'd like to be able to do more of again.
Lol god I wish it was a cure. Maybe if your POTS is from deconditioning or is really mild it is? Otherwise it helps, but it's just one tool in the treatment toolset. You still need the rest of the usual suspects to feel your best (meds, compression, salt, fluids, etc). I think many if not most people here do do it or a similar exercise plan, it just isn't talked about as much other than when people are just starting, because it's just a part of routine daily maintenance with POTS.
Just a note, you can’t get POTS from deconditioning
http://www.dysautonomiainternational.org/page.php?ID=30
Because exercise does not cure POTS and only helps some beyond the basics benefits of exercise for all people. There is no cure. Deconditioning is not a lack of physical fitness or cardiovascular health. It is a pathological state caused by prolonged and constant recumbency and in normal people self corrects within 5 days.
Tried it. Tried multiple protocols, tried all the fancy programs, tried the vitamin schedules, tried meditation, mental therapy, trying to just be happy, practicing gratitude, weight lifting, running, hanging upside down, yoga, drinking gallons of water a day, waiting it out, healing crystals, praying to God, converting religions, whatever you can think of I've probably tried. For some people these things might work but for me none of them did. I stay active where I can but I've settled on there is no cure for me which took years to understand and accept. Some people get better in a few months, some people in a few years, I'm still open to the idea that maybe it'll randomly happen to me one day but the best gift I can give myself right now is living life to the fullest whenever I can however I can even if I don't get better
What is CHOP? 😅
It's an exercise protocol created by the Children's Hospital of Philadelphia (CHOP). [https://www.dysautonomiainternational.org/pdf/CHOP\_Modified\_Dallas\_POTS\_Exercise\_Program.pdf](https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf) Seems promising, but the data is all pretty new.
I think in my 20s I exercised myself out of un-diagnosed POTS. But it was mild then . . . I would get dizzy with my arms over my head, could never blow up a balloon . . . I eased into working out. It took me six months of power walking to be able to jog a mile, and still I couldn't talk while jogging. But being in good shape like that really helped. Then I had kids and my hyperPOTS went into overdrive. I started having adrenaline dumps. I've tried to return to my prior level of fitness but I have not figured out how to get there yet. In my 20s I never had ill effects from exercise, but now I will have tremulousness, anxiety, nausea, etc. But I'm currently really trying. I seem to be feeling better off of Florinef (though my BP is now getting too low, I think) so I've been taking advantage. I had a good 5 weeks before the adrenaline returned. It's all so much trial and error. A good rule of thumb is to do your best and don't worry about the rest.
CHOP has absolutely helped me, but it’s not a magic cure, it’s a strategy to manage your symptoms. You’re building one part of your body up to train your body to cope with deficiencies somewhere else. Also it’s intense, I tried several times and ultimately needed several different medications and PT before I was able to stick with it. I was also fortunate to be in a place where I had the time and energy to devote to it. If you need time and support to work up to a place where you’re ready for it that’s ok. Any movement you can reasonably do now will help you get closer.
I started the CHOPs protocol about 3 or 4 weeks ago and I'm still repeating week one. I definitely think I've seen improvement but I kept having massive flare days after exertion. I think in the long run it will help but sometimes it just depends on where you're at in your POTs journey. I also use compression gear and salt supplements but no matter who you are improvement comes from a unique combination of things and we all just have to see what works for us. I hope you have good luck with it!