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I am curious what everyone else experiences with exercise intolerance.  

For me, I feel mostly ok when performing the exercise - I get somewhat fatigued and short of breath but it is manageable.  The real problem is that after the exercise (often not until several hours later), my heart rate is extremely high, I feel anxious, and I develop terrible fatigue.  These symptoms will gradually resolve over the next several days.  Is this typical?

I also never know how much exercise is too much that it will trigger an exacerbation of my symptoms.  When exercising, has anyone learned to recognize signals that tell them when to stop?

I am also currently unable to walk for more than about 3 minutes at a time.  I am desperate to increase the amount of time I am able to walk.  Does anyone have suggestions for exercises I could do to improve my walking endurance?

I'd very much appreciate people's thoughts.

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28 minutes ago, SCOOBY said:

I also never know how much exercise is too much that it will trigger an exacerbation of my symptoms.  When exercising, has anyone learned to recognize signals that tell them when to stop?

I just went thru Cardio rehab not to long ago, I can say it was worth the effort. What they had me do was to gauge how i felt (Perceived Exertion (RPE) Scale) and when i would get to a moderate level i would stop and rest up for a bit and then start again.

https://my.clevelandclinic.org/health/articles/17450-rated-perceived-exertion-rpe-scale

 

34 minutes ago, SCOOBY said:

I am also currently unable to walk for more than about 3 minutes at a time.  I am desperate to increase the amount of time I am able to walk.  Does anyone have suggestions for exercises I could do to improve my walking endurance?

As part of the Cardio program they had me use the treadmill. So using the above scale i was progressed over time to tolerate longer walking times and even steeper grades.

So as an example i started out at 2.0 mph and 0% grade and once i could work up to walking 8 minutes we increased the grade by 1% and repeated until i could make the 8 minute mark (i made it to 9%) The overall results is that i am able to walk now for 40 or so mins. Keep in mind this did not happen overnight but with enough persistent you will see the benefits.  

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I have a few things you could consider. If you are just starting up with exercise, or if you are starting with upright exercise (i.e., walking), you may be pushing your body a little hard. Have you looked at the CHOP protocol? It’s designed for people with POTS, to build exercise capacity, first in reclining positions and then moving to more upright exercises. When I tried it pre-pandemic (it was hard for me to maintain without access to a gym), I found that I felt worse overall for several weeks (maybe 6-8 weeks?), then started to feel better overall.  So also if you are just getting started, it can takes the body a while to adjust to any kind of exercise. 

Another thing to consider is that you might have post-exertional malaise, which would be something to ask a doctor about, as that would change the exercise

recommendations for you. 

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I'm luck to walk 300 yards to/from mailbox these days.  I start looking for a safe place to land before I get back to the house.  I've tried a recumbant exercise bike but don't last three minutes with resistance set at "1".  I start getting discomfort.  I had a stress test 17 months ago, and numerous EKGs since, including wearing a ZioPatch monitor for two weeks.  All cardio indicators are normal.  So, I talked my cardiologist to set me up with another stress test just to be sure I can safely engage in pushing myself harder.  I feel confident that I can benefit from trying to restore muscle tone in my legs, and perhaps reduce the pooling that occurs.  

After my meager exercises, I do my best to get my legs elevated and try knee-to-chest crunches while on my back, which takes me from the brink of syncope.  But, like you, I too crater a couple hours afterwards.  I do not have elevated heart rate or anxiety, other than being bummed.  Recently, during these post exercise crashes, I have started to get prone and do a lot of leg elevations and knee-chest crunches and abdominal contracting.  This seems to resolve the severe exhaustion/fatigue sypmtoms so I can safely walk about the space and maybe even get a few things done in the kitchen.  

Once I get the stress test, I hope to do four or five sessions per day on the recumbant xbike, and, hopefully be able to sustain each session much longer than the paltry three minutes I do now.  Two years ago, I could do 30 minutes at high resistance levels and go straight to the yard and garden work, or deck building or ...  I was pretty proud of getting my just retired hulk in shape.  Then this stuff started.  Oh well.  

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9 hours ago, SCOOBY said:

The real problem is that after the exercise (often not until several hours later), my heart rate is extremely high, I feel anxious, and I develop terrible fatigue.  These symptoms will gradually resolve over the next several days.  Is this typical?

Yes, that sounds like post exertional malaise, commonly known as PEM. It is typical for many. So the trick is to learn your body’s signals as to when you are crossing your line. It took me a long time, but now I recognize my signals, though they are subtle—a feeling in my chest is one of them, sort of a hollowness, but it is probably quite individual. I also did cardiac rehab and was able to double my exercise capacity over three months. They had me exercise on equipment for 3 - 5 minutes, then rest for 5 minutes. after each segment they measured my vitals. They increased the time and level VERY slowly, and I think that is key.

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On 1/17/2022 at 12:02 PM, Yhoun said:

I downloaded and read this months ago, but still have no idea what I'm supposed to be doing. 

For example; Day 1 Month 1 reads: 

Training Mode 1

5-10 min Warm Up

3 min Base Pace

2 min recovery

3 min Base Pace

5-10 min Cool down

What is Base Pace? There's no link to these exercises. Can I do all of this without access to equipment? 

Day 2 Month 1: 

Strength Training

That's it. How many exercises? For how long? 

This is an incredibly confusing regimen as written. Even the doctors I've brought it to have no idea how this works. 

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10 hours ago, MTRJ75 said:

I downloaded and read this months ago, but still have no idea what I'm supposed to be doing. 

For example; Day 1 Month 1 reads: 

Training Mode 1

5-10 min Warm Up

3 min Base Pace

2 min recovery

3 min Base Pace

5-10 min Cool down

What is Base Pace? There's no link to these exercises. Can I do all of this without access to equipment? 

Day 2 Month 1: 

Strength Training

That's it. How many exercises? For how long? 

This is an incredibly confusing regimen as written. Even the doctors I've brought it to have no idea how this works. 

It’s not the most clearly written, that’s for sure. You do need access to equipment, whether at the gym or at home. I had trouble keeping up with it when the pandemic hit and the gyms closed. 

Page 12 has the chart that explains “base pace,”  “recovery,” etc. I am on a beta blockers, so I used “perceived exertion, not the heart rate chart. A health professional is supposed to calculate the best heart rates for you, if you’re not on a beta blocker. 

It doesn’t give much guidance for strength training, only the sample exercises. But I think it doesn’t matter what strength training you do, as long as you focus on core and legs. I just decided to do whatever I could in 15-20 minutes, sometimes I did the suggested exercises, sometimes I used gym machines.

There’s a Facebook Group (POTS Exercise Protocol) with other people who are, or have been, working on it, if you’re on Facebook and want more explanation/conversation/support. 

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On 1/18/2022 at 1:28 AM, Sushi said:

Yes, that sounds like post exertional malaise, commonly known as PEM. It is typical for many. So the trick is to learn your body’s signals as to when you are crossing your line. It took me a long time, but now I recognize my signals, though they are subtle—a feeling in my chest is one of them, sort of a hollowness, but it is probably quite individual. I also did cardiac rehab and was able to double my exercise capacity over three months. They had me exercise on equipment for 3 - 5 minutes, then rest for 5 minutes. after each segment they measured my vitals. They increased the time and level VERY slowly, and I think that is key.

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

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3 hours ago, MTRJ75 said:

I understand what Base Pace means, but what am I supposed to be doing at Base Pace? Although, with lack of any equipment that isn't in my house, it probably won't matter much anyway. 

Depends on what part of the program you’re in. For the first few months, you’re rowing or recumbent cycling or swimming. 

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1 hour ago, Nin said:

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

I previously had the same question.  I was told by my doctor that I needed to exercise consistently to see improvement.  For me, consistent exercise made me worse.  After exercise, my HR would increase significantly for several days and I would feel terribly exhausted.  I found that if I attempted to exercise in that state I would only get worse, and my overall exercise tolerance would decrease.  This is just my experience - I don't know if it is typical for others.

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I have the same issues @SCOOBY. I obviously can't go back to my pre-POTS workout routine, but it still seems anything I try to do has devastating consequences/after-effects, which is why I hoped maybe the CHOP regimen would help, but it doesn't seem to be something we can do from the comfort of home. 

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Just makes me wonder if there is more to it like chronic fatigue syndrome as well as pots. I know with cfs you got to be very careful how far you push yourself otherwise you make yourself really ill. It does seem to coexist with pots

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20 hours ago, MTRJ75 said:

I understand what Base Pace means, but what am I supposed to be doing at Base Pace? Although, with lack of any equipment that isn't in my house, it probably won't matter much anyway. 

Base pace applies to whatever means of exercise i.e walking, treadmill, seated stepper machine. so when i exercise on the treadmill my base pace is 2.5 mph. Yeah not having any home equipment is not very helpful. I know some of the folks that were at Cardio Rehab with me used the stairs in their homes to get a workout. But this is not for everybody. 

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I personally think the POTS protocols where patients are forced to push themselves to the limit exercising in an upright position make no sense. The exercise hangovers from cardio were awful with me, with migraines and tachycardia lasting for days after.  I switched to doing floor exercises/stretches and gradually moved into advanced yoga without any side effects to my pots. I think this is a much better for exercise for me personally. 

Edited by yogini
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5 hours ago, yogini said:

I personally think the POTS protocols where patients are forced to push themselves to the limit exercising in an upright position make no sense

In my case I have to agree, I cannot do any exercises unless I stop when I can tell that I've had enough. I do best doing exercises ( I use a rowing machine and swear by it ) when I am well rested and can assure that I can rest afterwards. When I am in a flare and cannot exercise I do leg and abs exercises in bed. 

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Well i have never been forced to push my limits while exercising at rehab and was encouraged to stop when i felt i had enough. What has worked is being persistent in keeping up with with the exercises. small gains over time add up. 

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12 hours ago, Pistol said:

In my case I have to agree, I cannot do any exercises unless I stop when I can tell that I've had enough. I do best doing exercises ( I use a rowing machine and swear by it ) when I am well rested and can assure that I can rest afterwards. When I am in a flare and cannot exercise I do leg and abs exercises in bed. 

Being in a reclining position is a big help.  Honestly I can’t believe that doctors didn’t figure all this out for us.  POTS is triggered by being upright. 

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  • 2 weeks later...
On 1/20/2022 at 1:39 PM, Nin said:

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

For me, if I get PEM, that is a signal to back off to a level where I don’t get it. I was lucky that I had an autonomic specialist who told me to immediately sit down if I felt symptoms—even if it met sitting down on the floor of a store. It felt weird at first but I found it to be good advice.

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7 hours ago, Sushi said:

For me, if I get PEM, that is a signal to back off to a level where I don’t get it. I was lucky that I had an autonomic specialist who told me to immediately sit down if I felt symptoms—even if it met sitting down on the floor of a store. It felt weird at first but I found it to be good advice.

Same here. I barely leave the house, but if I have to ( to go to a doctor etc ) I take either my wheel chair or my walker with a seat, so I always have a seat available immediately. Stores especially are bad for me and I really do not want to be wheel chair dependent, so the walker comes in really handy! I can sit whenever and where ever I need to but can walk when I can tolerate it. 

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@MikeO haha! I sooo relate! I no longer wish to EVER have those stares come in my direction, so the walker with a seat is perfect. I got mine from amazon and it was not expensive. 

P.S. I stopped dying my hair bright red, so with my grey streaks I blend in perfectly as an old lady!

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