Should I keep HR low or push it high while exercising with POTS?

[Rebeccare]

Although I've been sick for years, in the past few months POTS symptoms have become much more difficult and disabling, so I'm new to POTS management. I know that exercise if often prescribed for POTS, and for people without ME/CFS exercise routines can make a difference. But how do you balance the need for exercise with the limitations of ME/CFS?

I'm trying to figure out what kind of exercise would be helpful and not harmful. In the past I've been able to successfully increase my strength with gentle recumbent cycling, so it seems like now is a good time to buckle down with that again.

I guess my big question is: with both POTS and ME/CFS, when I'm exercising does it make more sense to keep my heart rate in a low range, or try to push it higher? I'll tag @Sushi here just because I know she has had some success with very careful (and carefully supervised) exercise.

 

[nerd]

From my experience, when I still wasn't aware that it's CFS/ME, I would lose my consciousness when pushing it too far, and I would feel PEM for days after exercising. If I still did exercises, I would do mild exercise and I wouldn't trigger aerobic glycolysis. This means long intervals. Get your HR down during pauses and keep them low during exercise. Get sufficient proteins, no glycaemic food that pushes insulin and glycolysis. It's not about reaching limits as it is for healthy people. The hyper-inflammation in CFS/ME allows for any microtrauma to cause a long trauma. Even if your HR stays low, I don't think it's advised for CFS/ME.

 

[Judee]

Just an opinion but I would keep it low and just work on making your workouts a little longer each time.

@ljimbo423 talked about just adding one minute to his workout each time and how that really helped in this thread:https://forums.phoenixrising.me/threads/what-are-you-grateful-for-today.56762/page-164

I think that the Workwell Foundation also says you should stay within your anaerobic threshold.

Edit: I also cannot find the original story but they had a patient that would do her aerobics laying in bed along with stretching, I believe. When she came back after a year to get tested again, they were happily surprised that she had managed to raise her anerobic threshold.

 

[ljimbo423]

What I've done is kept my exercise well within my anaerobic limits. I walk at a comfortable pace, about 3 miles an hour, so that I don't get winded or feel like I'm pushing myself.

As I mentioned in the thread Judee posted. I've been able to increase my walking from 10 to15 minutes (1/2 mile to 3/4 of a mile) in a very short time, with possibly some minor extra fatigue here or there but overall my energy has increased.

I think there needs to be a balance. Where I push myself a little, to extend the length of my exercising. While at the same time, staying within my energy envelope, so I don't get significant PEM or excessive fatigue.

You might need to start with cycling or walking for just 2-3 minutes and work your way up from there. Your body will let you know. My best advice I think, would be to listen to your body and adjust your exercise according to how it makes you feel.

A little fatigue is probably expected. PEM or excessive fatigue, might be signs to slow down a little.

 

[Sushi]

From my experience, I agree with all the comments above. I have experimented with increasing my exercise time by one minute a week and that worked quite well. I also keep my heart rate low and if I am going to stretch my exercise time I will take a rest in the middle—often trying not to look like a bum while I sit on a curb. I pay later if I push my HR. If I am cycling I go incredibly slow! Good luck—it is hard to restrain ourselves sometimes.

 

[Rebeccare]

Thank you, @nerd , @Judee , and @ljimbo423 and @Sushi ! I recently got a fitbit so I can carefully monitor my heart rate while exercising (and doing everything else).

I guess I was curious if getting my heart rate up a little more might be beneficial POTS-wise, but what you guys are saying is in line with what I was feeling in my gut. And if simple bed aerobics and stretching can lead to some benefit, I guess slow and gentle cycling will, too. I've found that, if I'm careful with my pace and my breathing, I can keep my heart rate right about at the anaerobic threshold (whereas a short walk around the block with my brother resulted in a heart rate of 168 ).

I had previously increased my limits similar to you guys; I had gone from 2 minutes on the recumbent cycle to 30. But when the pandemic hit I traded in biking for walking, just so I could get outside more. But now I'm going back to the bike and, instead of walking, lying down in the garden when it's warm enough.

 

[Rufous McKinney]

My best advice I think, would be to listen to your body and adjust y

I think the additional trick here is: the body might not send a message right away- stop now. I think my half hour here at the table, in a chair with a brush, was within my window- but the next day I found out it wasn't.

which is why pacing is so hard. so you might need to simply make an arbitrary decision to start at some very small amount of effort...tiny...and then just be real gradual in the build up.

If I walk a little more- I seem to develop more POTS and tachycardia and negative symptoms.

But there just has to be some way! (our eternal optimist is still in there someplace)

 

[Rebeccare]

I think the additional trick here is: the body might not send a message right away- stop now. I

That's really good advice! I was once told: do only 60% of what you think you are capable of. So if I'm on the bike thinking: I feel great! I could go for another 5 minutes! But if I've already been on the bike for 5 minutes, I'll start winding down so I can quit while I'm ahead.

 

[ljimbo423]

I think the additional trick here is: the body might not send a message right away- stop now.

Mine won't send the message that I've done too much for 2 days. Just like clockwork. So I take that into account when I exercise.

I think my half hour here at the table, in a chair with a brush, was within my window- but the next day I found out it wasn't.

which is why pacing is so hard. so you might need to simply make an arbitrary decision to start at some very small amount of effort...tiny...and then just be real gradual in the build up.

I think for many of us, finding out how much we can do before PEM kicks in is very difficult, without adding in extra physical activity. So, increasing one's health through increased physical activity can be fraught with PEM.

I can say for sure that while I was mostly bedridden. Thinking about increasing my physical activity, was the last thing on my mine. It was often a struggle to get something to eat.

 

[Rufous McKinney]

increasing one's health through increased physical activity can be fraught with PEM.

I simply witnessed myself, having to walk further for basic pragmatic reasons (food, water is further away).

My enlarged lymph nodes went way way down. My lymph was much better, I was a bit stronger in the legs etc.

Traded those improvements, for more neurological misery.

 

[Booble]

With POTS I've found it best to NOT look at my heart rate monitor and let my body do what it needs to do. When I try to control it by adjusting what I'm doing it always ends up worse.
So my advice is to pick something you are comfortable with -- something gentle like walking, light swimming or bicycling on flat ground. Start with a slow amount of time that feels good. Do that for several days and your POTS body will learn to handle it nicely. Then if you want up whatever by a bit -- and extra 5 minutes on the walk, and extra lap in the pool, a wee bit further on the bike. Do that level for a week or two and if you acclimate nicely either stay there or go up another time. I've found that with POTS my body needs to know what to expect so changing often isn't great. But changing and then staying at that level seems to work.

When I was doing my dancing to songs (privately at night when nobody could see me!) I started with one or two songs and then I was up to about 8 songs. I don't like the add more every day thing as my body PEMS with that. But if it knows what to expect it's pretty good.

Good luck!

Edited to add: And don't forget to stay hydrated!

 

[panckage]

Personally I haven't found heart rate to mean much. Perceived exertion gives me a much better idea. I can go 20-30min on an exercise bike with minimal resistance.

Also I noticed that "going slowly" with POTS just made me weaker and worse mobility. I find it is better to stand up fast, for example. Sure it makes me feel sick but it passes. Holding myself up with my arms after standing quickly is helpful too. Deconditioning makes POTS worse so it is important for me to make sure I use my strength.

Wim Hof breathing was a huge help in basic strengthening when I was too weak to even do yoga

 

[Booble]

Personally I haven't found heart rate to mean much. Perceived exertion gives me a much better idea. I can go 20-30min on an exercise bike with minimal resistance.

Also I noticed that "going slowly" with POTS just made me weaker and worse mobility. I find it is better to stand up fast, for example. Sure it makes me feel sick but it passes. Holding myself up with my arms after standing quickly is helpful too. Deconditioning makes POTS worse so it is important for me to make sure I use my strength.

Wim Hof breathing was a huge help in basic strengthening when I was too weak to even do yoga

Wow, you can stand up quickly?

 

[panckage]

Wow, you can stand up quickly?

Yes, it takes a while for things to fade back in but I have never fainted. Holding onto something during this period helps but is not necessary

 

[Learner1]

@Rebeccare The first thing that's important in exercising with POTS is to treat it, or exercise will be mighty difficult.

For low BP, some are on fludricortisone, wear compression socks, and increase salt and water. For high BP, beta blockers are prescribed. In either case, increasing acetycholine is important, either through Mestinon (pyridostigmine) or the supplement Huperzine A.

When I was at my worst, I found weightlifting to be most doable and efficient. I could do 1-3 sets of 10 exercises and have a nap on the floor before continuing on. The strategy of slowly increasing as I felt ok to do it was useful.

Then, I began walking, in short amounts, napping on the ground if needed before continuing on. I slowly, over time, as treatments helped was able to eventually increase distance up to as much as 17-19,000 steps, slowly, on my best days, with a couple of rests.

I found that taking hydrocortisone, liothyronine (which testing says I need), NAD+, glutathione and branched chain amino acids (BCAAs) all support my exercise and help prevent PEM. It is important to provide the things your body needs to support exercise. A high protein diet to support muscles is important too.

To this day, I still have trouble with any aerobic or intense exercise. Before my illness, I did high intensity interval training, which is still impossible. I have trouble swimming, as my heart races and I need too much oxygen, even though I was an excellent swimmer. No amount of aerobic trading has improved this. I can't go over 120 beats per minute, which doesn't take much to get there, while I exercise, or I crash still.

. If I still did exercises, I would do mild exercise and I wouldn't trigger aerobic glycolysis

This doesnt make sense to me..Were you tested? How do you know this?

The reason I say this is that I have done metabolic testing, where I wore a mask to collect everything that came out in my breath, and the test showed I was doing almost all glycolysis, using up glycogen stores in my muscles too quickly, pointing to why aerobic exercise is for difficult, why I hit a wall, and why I feel a burning in my forearms and legs ehrn I go over a particular threshold. The answer is to switch to more fatty acid oxidation, which my body doesn't seem to like to do, even though I have plenty of carnitine.

I'd also say that ensuring any infections are treated would help ability to exercise..if they're not, placing more demand on the body may make one sicker. As a former athlete, I exercised carefully and rested a lot while I was on antivirals and antibiotics for my 7 infections.

Good luck!

 

[Rebeccare]

@Rebeccare The first thing that's important in exercising with POTS is to treat it, or exercise will be mighty difficult.

For low BP, some are on fludricortisone, wear compression socks, and increase salt and water.

Yes, I'm on it! I drink like a camel, consume amounts of salt that would make my mother blanch in horror, and I wear thigh-high compression stockings. Plus I've re-started taking midodrine in the last few days which so far seems to be helpful.

have a nap on the floor before continuing on

I had always resisted doing this. I think part of it was my pre-ME/CFS attitude of: "I need to just power through!" And part of it was that I was scared if I took a break I wouldn't go back to exercising. It's good I'm now learning this is a helpful strategy.

I began walking, in short amounts, napping on the ground if needed before continuing on.

Did you try any kind of recumbent exercise first, or just move from weightlifting to walking? At the moment my heart rate goes up to anywhere from 120-170 if I try even gentle, short walks (although I've not tried walking since starting the midodrine). But for the most part I can be on a recumbent cycle without getting my heart rate too high. And on days when I'm not able to tolerate even that I'm trying some strengthening exercises in bed, and my heart rate barely goes up.

I'd say that my goal is not to work up to high-intensity aerobic exercise; I didn't work out even before I got sick. I just want to be able to regain some of the functioning I've lost in the last few months: the ability to sit and stand for certain amounts of time without it being a big deal for my body so I can do everyday things like laundry, cooking, and cleaning house. And if I regain the ability to take my daily walk as well, that would be a nice bonus.

How on earth do you manage napping on the ground without attracting curious glances from the neighbors or getting chilly (at least in the winter)?

branched chain amino acids (BCAAs)

I've recently started these, as well!

I can't go over 120 beats per minute, which doesn't take much to get there, while I exercise, or I crash still.

When you exercise, what range do you try to keep your heart rate in (and I understand it's different for each person)? Based on Workwell's recommendations (stay within 15 bpm of your resting heart rate) I should try to keep my heart rate below 80, which just feels low to me, but seems like it's necessary.

Yes, it takes a while for things to fade back in but I have never fainted. Holding onto something during this period helps but is not necessary

I'm the same way; I'm so impatient! My strategy is that when I get up I often launch myself at something such as a wall or a piece of furniture that I can cling to while I wait for my vision to come back (I never faint, but my vision can go sparkly or black for a few seconds).

 

[Booble]

Interesting how we are all different.
I'm good if I don't have to do anything where I have to bend over or go down to the floor and get up again.
I don't think I could ever do weightlifting for that reason.

Swimming on the other hand provides that weightlessness and compression of the water and the cold water and boy do I feel great with the most energy ever (for about 15 minutes) after.

Walking is great for me because my head and body don't have to change position from down to up.

And my faux secret dancing let's me move in whatever directions are comfortable and loosen me up and get some aerobic.

 

[Booble]

Yes, it takes a while for things to fade back in but I have never fainted. Holding onto something during this period helps but is not necessary

Oh yes, I know that fade back in very well. I've never fainted either. When I was younger I thought everybody had that.

And I also thought that everybody found it uncomfortable to pick things up off the floor. What a surprise to learn that "normal" bodies can do that as a matter of course without noticing it.

 

[Jyoti]

When you exercise, what range do you try to keep your heart rate in (and I understand it's different for each person)? Based on Workwell's recommendations (stay within 15 bpm of your resting heart rate) I should try to keep my heart rate below 80, which just feels low to me, but seems like it's necessary.

I recently asked my POTS/Cardio doctor this and he said that I should try to stay under 60% of my maximum heart rate based on age. Yours I believe would be about 185? Not entirely sure, but that is easy to check. And 60% of that would be around 110. Which I find a lot more doable than under 80, given that I routinely get over 90 just puttering around the house.

 

[hapl808]

Puttering around the house regularly puts me over 120, so keeping in a 'healthy range' isn't really an option for me.