Pacing, PEM, Energy Crashes and Flares

[Simone_Em_Aus]

Using a heart rate monitor was a game changer for me for managing PEM. I’ve had the same HRM for the past five or so years (MIO Alpha 2), and it’s been great (after a false start with a different HRM which shall remain nameless, which died after only a few months).

Sadly, my MIO has now gone to HRM heaven, and I need to find a buy a new one. I’ve not been keeping up with which ones are good, and have forgotten just how overwhelming it was to research them all last time.

So, I’m turning to the brains trust on here, and wondering which HRM you use and what you like about it? I’m only interested in wrist monitors, even though chest straps are more accurate, because I can’t tolerate wearing a chest strap all day.

I do have a Wahoo Tickr for measuring HRV (which has a chest strap), which has been terrific and was very inexpensive, for anyone interested in HRV!

[river]

I use the Garmin Vivoactive 4S (it comes in two sizes, so it's one the few round watches that actually fits my tiny wrists). While not among the most accurate on the market, it's better than certain brands which shall remain unnamed and the features and app are excellent. It has the ability to set alarms for heart rate zones, fully customise your zones, and customise the data shown while running activities on the watch. I made a very detailed instruction document on how to set it up with the most useful features for pacing, which I'd be happy to share with anyone interested in trying this model.
Garmin has their own version of HRV built in, though as it's not a chest strap one should take the data with a grain of salt. Garmin calls it "stress"; their "high stress" is low HRV, and "low stress" is high HRV. They also have a feature called "body battery", which is meant to estimate how much energy you have based on your sleep quality, HRV and heart rate. Mine is almost always bottomed out, lol.

Edited to add: my document on setting up the Garmin watch probably needs updating, as a few things have changed with how it works since I wrote it.

[Simone_Em_Aus]

Thanks so much, @river! I’ve heard good things about Garmin! Thanks for sharing your doc!

[SandyAtHome]

I'm really glad to hear that heart rater monitoring has helped you @Simone_Em_Aus . I'd love to hear your story of how you did it. I've used heart rate monitoring in the past using a polar chest strap and my mobile phone, but I also tried with a Garmin vivosmart 4 watch. I could never work out how to set an alarm that would let me know when my heart rate was too high. (I'm so not tech savvy). I also found that some days just standing and cleaning my teeth put my heart rate over it's maximum and so I found no wriggle room with what I could or couldn't do. I also found that some days I would still crash even though my heart rate remained under the max. I ended up more confused than when I began!!!

[Coggles77]

@SandyAtHome I feel the same! I had a Garmin vivosmart but couldn't work out how to change the alarm so it alerted me at the time I went over a set HR. And it almost seemed irrelevant because even if my HR went too high on tasks like getting food, I had no choice but to still get food, or brush my teeth or any of the other daily tasks I need to do. I keep wondering if I should try again...but I'm not convinced the effort it worth it.

[Chris]

Hi all.
I’ve gone through months of trying Graded Exercise Therapy with no real change. I would seem like I was improving only to have it all catch up to me and be struck down with PEM (Post exertional malaise) days later.
I was doing 20 min to 1 hr sessions managing my heart rate and effort.
Just wondering if High Intensity Interval Training would be better?
Any advice or experiences would be interesting to read.
Thanks team
Chris

[Chris]

Hi. I just bought a Fitbit charge 4. It seems pretty good.
I can get a read out of my heart rate during the day as well as anytime I check the unit.
Also has a sleep analysis.
This is all I know as I haven’t used any other wrist ones.
Good luck

[Simone_Em_Aus]

@SandyAtHome Pacing with a HRM is something that definitely takes time. It’s not magic, and it doesn’t prevent PEM (at least it didn’t with me). I guess if you’re super strict about it, maybe you could prevent PEM entirely, but for me balance and quality of life are important too, so I wasn’t ever that strict.

I don’t know how the Garmin works, so can’t help with setting an alarm. My Mio has an alarm, but I ended up not using it. It also had a flashing light which changed from green (below my AT) to red (above my AT), and I became really good at noticing the change in my peripheral vision, sand found it less jarring than an alarm.

For me, it wasn’t about eliminating PEM, but minimising it. I’m mostly bedbound and my HR goes above my AT if I get up to go to the toilet. On bad days, it goes up if I just sit up in bed. So I didn’t try to keep my HR below my threshold 100% of the time, just most of the time. And I tried to keep the time above the threshold in short bursts. Sometimes that’s not possible (especially on bad days). And POTS makes it harder too.

I also found that the HRM helped me to know when to stop doing something, even something cognitive. I would find my HR would start creeping up as I was getting tired, but before I was even aware that I was getting tired. So I would try to stop my activity before I got to my threshold (I found if I waited until my HR got to threshold, it was often too late and I was later crash).

I also found it helpful to look back at the graph of my HR over the day, to see how much time I’d spent over my threshold that day. I knew when I’d gone over too much that I’d probably have some bad days coming.

Finally, I found that measuring morning resting heart rate was a great way to have a gauge of how my body was that day and whether I need to be careful and rest, or whether I could do some activity. I tend to overestimate what I’m able to do, and underestimate how much rest I need, so having something objective which tells me I need to take it slow, really helps!

We can start a thread on using HR monitors for pacing if that would be helpful? I’m sure others would have useful tips they could share too!

[Simone_Em_Aus]

@Coggles77 It’s not worth it if the tech is too much of a pain to use. I think the hard part about using HRM for pacing is realising that it’s almost impossible to stop our HR from going over the threshold. But, for me, that wasn’t really the goal. For me it was about minimising PEM where I could.

Using a HRM can help you notice what activities (or duration of activities) push your HR over your threshold and track changes you might make too. There are some things that you just have to do regardless, but for most of us there are probably some things we can tweak to reduce the impact of those activities on us, whether it’s breaking a task down into small chunks, or doing it sitting or with elevated feet etc. The HRM gives objective feedback on how much difference those tweaks make.

It’s not magic and it doesn’t eliminate PEM, but it can help. That said, it isn’t for everyone, so I’m not trying to convince you to try it again. I can understand why you’re not doing it. I stopped wearing my monitor for a while, too.

[Simone_Em_Aus]

Thanks, @Chris. That’s really helpful!

[Daffy_Dave]

Hi Chris

In terms of exercise, as best I understand it the latest science on ME/CFS supports the idea of exercise using the concept of pacing - so trying to exercise without triggering PEM (keeping diaries of how you're travelling after exercise can be good for this, particularly if brain fog plays merry havoc with your memory).

GET, in its traditional form (some practitioners have been more-or-less relabelling pacing as GET which has muddied the water somewhat, but it sounds like you might have been doing traditional GET) has been found to be far more likely to trigger PEM and cause harm for people with ME/CFS, and so should be approached with a high degree of caution - depending on its severity and frequency, PEM can lead to a longer-term deterioration in symptoms, which is most definitely worth avoiding!

I've just had a quick Google of HIIT, and it looks like something that would be quite difficult to assess in terms of PEM management, and quite risky, but the key to pacing is understanding and listening to your own body. If it were me trying HIIT, and I was well enough to be trying that kind of thing, I would start (noting this is just my 2 cents, and in no way scientific) with very short sessions, with a couple of days between them, to make it very easy to assess any PEM. If I was getting away with it, I'd then build up very slowly, and dial-down how much I did on days when I was a bit rougher. I'd keep a careful record of how much exercise I did, and how I travelled after each session. My PEM tends to come on no later than a day afterwards (it doesn't always peak then, but I know the day after if I've misbehaved) so a two-day gap between workouts would work for me, but you may need to adjust the time period depending on how you're affected by PEM.

Personally (and this is just "what I do when health allows" - it's not particularly scientific), when I go through patches where I can exercise (unfortunately far less frequently than I'd like - two decent patches in the last decade), I start with stretches (3-5 minutes a day, building up to about 15), and then if I'm still alright, start adding very small quantities of 'traditional' exercises, usually anaerobic (for whatever reason - and I think there is a scientific reason but I can't recall it right now, we tolerate anaerobic exercise better), like sit-ups or push-ups, and then build up as far as the health will allow. If I'm having a rough day, I dial back what I'm doing, all the way to nothing as appropriate (I catch every bug under the sun, so I get plenty of rough days from that, as well as from PEM from real-world things that are hard/impossible to avoid). I have to be careful - usually at some point during the good patch I'll throw caution to the wind, and try and jog or something, and get hammered by PEM - during the last patch, a 2.5 minute light (not much more than an enthusiastic shuffle) jog set me back for over a week, and that was when I'd worked up to two sets of ten push-ups and two sets of about 20 sit-ups.

I do find that if I can get to a level of health where I can exercise, that the exercise does seem to build in some resilience as well, but to-date other developments (eg. viral or bacterial illness, emergencies requiring PEM-inducing activity) have always triggered enough PEM to knock me back to ground zero. At the moment, I'm not even at the regular stretching stage, and haven't been there since mid-2019. Prior to my good patch in 2018-2019, I hadn't been able to do anything other than patchy short stretching since a nasty bug in very early 2013. At the moment, I do the household cooking, which I pace out (so I don't do a recipe all at once, but do some chopping in the morning say, then have a rest, then some more chopping at lunch, then the actual cooking in the evening) and that's about as intense a physical activity as I can handle (and I've had patches years-long where that was beyond me) without serious PEM.

Best of luck with your exercise - if you're happy sharing, it would be good to hear what approach you go with, and how it goes

[Jop]

I use a Fitbit Versa. You can choose from hundreds of watch faces, most have HR as a feature. You can study graphs of you HR in the app, and there are different colours for different HR zones. But I would be wary of buying a Fitbit. I’ve had five in the last five years, and none have lasted more than a year. They have a 12 month warranty and have been good about replacing the watches that have broken down, but they should be making units that will last.

Personally though, I found it too draining to constantly monitor my HR. I’m more focussed on knowing my limits and sticking to them.

[Daffy_Dave]

Thanks to everyone that's posted Getting a HRM for pacing is something that's been "on my list" forever, and I've never gotten around to, but it's very close to the top and is something I'm very interested in, and all of this information is very useful.

@Simone_Em_Aus said in Which heart rate monitor do you use?:

We can start a thread on using HR monitors for pacing if that would be helpful? I’m sure others would have useful tips they could share too!

I think that's a great idea - I'll start one now

[Daffy_Dave]

One of the techniques we (ME/CFSers) can use for pacing is to monitor how we're travelling, and whether we're overdoing it, is to use a heart-rate monitor (often abbreviated as HRM) for pacing. If people are happy to share their tips below, I'll collate them all in this post to provide an easy-reference tool for people to look at. The first tips come from the thread on which heart-rate monitor people use.

Up-front, note that heart-rate monitoring is not a silver bullet - some MEEPs have found there's no clear pattern between elevated heart-rate and PEM, and for many MEEPs even basic tasks like brushing teeth can lead to elevated heart-rate - but at least in some cases it's been useful, and so it felt worthwhile to do a thread/post like this.

• Glossary of acronyms and useful terms (click link to go to post containing glossary) - will be updated over time.

• Using an alarm or visual indicator to highlight when your heart-rate is above what it should be. A visual indicator spotted via peripheral vision may be less jarring than an audible alarm.

• The HRM can help indicate when to stop doing something, even something cognitive. For example, @Simone_Em_Aus would find their HR would start creeping up as they were getting tired, but before they were even aware that they were getting tired, and could try to stop the activity before reaching their threshold (if they waited until their HR got to threshold, it was often too late and they would later crash).

• It can be helpful to look back at the heart-rate graph over the day, to see how much time has been spent over the threshold. Going over too much can be a sign that there may well be a few rough days ahead.

• @Simone_Em_Aus found that measuring morning resting heart rate was a great way to have a gauge of how their body was that day and whether they needed to be careful and rest, or whether they could do some activity.

Many thanks for these tips which are brought to you by the posts either in this thread, or the "which heart-rate monitor do you use" thread, from:
@Simone_Em_Aus @SandyAtHome @Coggles77

[SandyAtHome]

@Coggles77 it seems like we both have the same experience using the heart rate monitor. I'm too not sure if I'll give it another try.

[SandyAtHome]

Thanks @Simone_Em_Aus. I was using it to prevent PEM and became frustrated because it wasn't working. I thought that if I could monitor my HR then I could stop the crashing before it started.
One thing I did find interesting was that my HR increased by at least 10bpm during and after eating even when lying down.

[SandyAtHome]

Thanks @Daffy_Dave .

[KateH_Em_Aus]

I'll throw my hat in the ring for a garmin. I ended up getting the instinct because there was a video of someone throwing it against a boulder and it was unscathed. I'm tough on gadgets. I do not want to worry about forgetting it in the shower or scraping it against something in the garden. It's not as accurate as a chest strap but I found I wasn't disciplined enough to do morning HRV readings regularly enough. I find the body battery function super helpful, and I can have a continuous 4 hrly graph of my HR so I can see if it's creeping up or down. I don't set alarms. I have POTS and I would go nuts if it told me every time I stood up I'd crossed my AT. But I can see how that would be useful.

[KateH_Em_Aus]

Hi Chris, this doesn't answer your question specifically, but I'm just wondering if you are familiar with the work of the Workwell Foundation? Here's one link. I had hoped to link you to few more articles of theirs but the links appear broken at the moment. https://www.healthrising.org/blog/2017/10/10/physical-therapy-workwell-chronic-fatigue-syndrome/. While it doesn't specifically address your question, their work on aerobic/anaerobic issues in ME/CFS might be helpful in working out what a safe approach for you might be.

[Simone_Em_Aus]

@SandyAtHome I think preventing PEM is a pretty tall order. A more realistic goal is minimising PEM. I didn’t eliminate it, but was more likely to stop activity, and so my crashes were less intense.