Using Heart rate monitoring to help with pacing.

[AliceLily]

Further back on the thread we were talking about heart strain and having to slow down when walking. I keep forgetting to liken it to the Covid slow walk and breathiness. It felt similar to how my ME is at times in that regard. Might not mean anything, just thought I would mention.

 

[ElephantNerd]

Where is the evidence base for that? We don't have any theoretical base for it so far.

This is such an interesting set of questions! If anyone is doing a study on this I'd be so happy to participate if eligible for inclusion criteria. Anyone know of anyone doing a good study on them use?

My gut feeling has been off quite a lot more than it has been "on", whereas a more objective external tracker tended to be much more accurate.

Yes!

I can literally sum up the math over a series of days and see with pretty good consistency whether it leads to PEM on the nth day. I will readily admit this is anecdotal and I would not want anyone claiming "evidence based" treatments off of that alone. But it is something I really wish someone would have told me to be aware of earlier from a service like the one @ElephantNerd describes

Agree so much! If someone had pointed me to this resource sooner I would have made very different life choices in the last decade, and maybe that might have prevented some of my decline. Maybe not, but I wonder.

To use the hypothalmus as accountant metaphor, it seems to me that when i'm very stressed something makes it temporarily stop telling me it's measuring, makes it 'run silent', so that I feel like I can do much more, and all symptoms are reduced to allow me to do more (in the moment).... but it's still counting. So that once I calm down it then 'tells' me how much I done (which is always FAAARRRR TOOO MUCH because i had no warning signals, no gut sense that i was going too far) & I start the PEM/crash process. Which is bizarrely then delayed by yet more 'wired but tired' & doesnt fully hit me until after I've slept.

This is such a brilliant metaphor I may have to use it when explaining to family and friends why I often seem "fine/well" when they see me but crash afterward.

I didn't really believe it could have such an effect until I checked what it was doing to my heart rate.

So relatable! I'm often surprised what affects my HR.

Not sure if this is helpful but I wear my HRM on my dominant hand and I have the setting for "no dominant", so it counts my arm movements as steps. This has been helpful for me to avoid overdoing activity with my arms.

Just to say I found overnight hrv a better , simpler pattern indicator of where I am in my pacing vs pem battle rather than micro managing steps or heart rate tracking. A low or excessively high score tells me I have triggered pem and need to be extra careful. Logging lots of symptoms or health data is beyond me now I am severe.

This is part of my calculus too. I think I have found that high resting HR generally correlates with low HRV, which indicates I should take it easier. High resting HR/low HRV days often follow days with higher HR or step count. But I don't know if that's just my biased interpretation.

Unfortunately that process had to be relearned all over again when my baseline severity changed.

Ugh yes this is so relatable.

work of rest' is so, so hard

YES!!!!


This conversation is insightful if dizzying. Most of the medical theorizing is way over my head, but I'm really intrigued by everyone's perspectives and experiences. And I'm learning about how others use HRM, which is really helpful for me. Thanks to everyone who has contributed to this conversation!

 

[Kiristar]

This is such an interesting set of questions! If anyone is doing a study on this I'd be so happy to participate if eligible for inclusion criteria. Anyone know of anyone doing a good study on them use?


Yes!


Agree so much! If someone had pointed me to this resource sooner I would have made very different life choices in the last decade, and maybe that might have prevented some of my decline. Maybe not, but I wonder.


This is such a brilliant metaphor I may have to use it when explaining to family and friends why I often seem "fine/well" when they see me but crash afterward.


So relatable! I'm often surprised what affects my HR.

Not sure if this is helpful but I wear my HRM on my dominant hand and I have the setting for "no dominant", so it counts my arm movements as steps. This has been helpful for me to avoid overdoing activity with my arms.


This is part of my calculus too. I think I have found that high resting HR generally correlates with low HRV, which indicates I should take it easier. High resting HR/low HRV days often follow days with higher HR or step count. But I don't know if that's just my biased interpretation.


Ugh yes this is so relatable.


YES!!!!


This conversation is insightful if dizzying. Most of the medical theorizing is way over my head, but I'm really intrigued by everyone's perspectives and experiences. And I'm learning about how others use HRM, which is really helpful for me. Thanks to everyone who has contributed to this conversation!

Yes, when I tracked it, an elevated RHR correlated to PEM (in my case an excessively low or high HRV) for me too. I just find hrv easier because my smartwatch does it all automatically. (eta Also somehow I trust an overnight calculated metric more than a spot morning figure I guess, which dates back to when I was trying to use a chest strap)

 

[Utsikt]

That has to be the worst survey I’ve ever attempted completing. Are they trying to get as few responses as possible?

 

[JemPD]

Ok so those of you who use HR monitoring to help with pacing... how do you calculate what figure to set yr alerts at?

I looked at the workwell recommendations here of 15bpm above average RHR.... but its hopeless. my ave rhr is 70 putting the alert at 85. It goes up to 90 just rolling over in bed, & up to 110 when i simply walk from bed to toliet.

I simply dont have a life where I can restrict activity to less than that or even only that. I have a lot of hosptial appts for other things, a house that is constantly in need of attention (i mean with essential repairs not cleaning/cosmetic stuff - lol it hasnt been decorated for 20yrs & is in a frightful state) and I'm alone with only part time care. No one else to sort anything out or I'd let them!

It just seems unworkable for me. I guess the

I saw one calculation yrs ago that was something to do with age.

But i remember when i tried hr monitoring yrs ago that i gave it up for the same reason, because it was impossible to keep hr under the threshold & since i get PEM from cognitive & sensory activity too, it just seems impossible to do the whole 'well it's individual so see what gives you PEM & set it under that' because my life simply isnt the same amount of activity every day, it just cannot be unless i was living with husband, parents or could get out of this sodding house.

And to a large extent i'm forced to do activities when there is help available to do them rather than when my symptoms are at optimum levels.

So which calsulation/guideline do you guys use?

 

[wigglethemouse]

I looked at the workwell recommendations here of 15bpm above average RHR.... but its hopeless. my ave rhr is 70 putting the alert at 85. It goes up to 90 just rolling over in bed, & up to 110 when i simply walk from bed to toliet.

Yeah, that does not work for me either. lol at just rolling over in bed. Some people have no idea what we go through.

So which calsulation/guideline do you guys use?

I use a number that seems workable for my situation and not have the alarm go off all the time. The alarm I have has a delay - I have to be over the threshold for X mins.

 

[Trish]

Jem, I agree it's not the answer for everyone, as things other than physical activity can trigger PEM too. And I have the same problem with the Workwell 15 beats above resting heart rate. Mine also averages 70, and getting out of bed and being up for a minute or 2 takes it over 85. But I have still found it helpful, not on its own, but more as a bit of evidence to tell me that, yes, I have done too much and need to stop.

I can walk about in my house (no stairs) and cobble meals together for me and my daughter, usually mostly ready meals. It's tempting when I've been upright for, say 3 minutes, to do just one more thing, but I can feel OI kicking in and know I need to lie down. Looking at my fitbit at that stage and confirming that my HR has gone over 100 confirms it. It has made me better at taking notice of my symptoms and stopping sooner.

It also tells me when I've been doing too much angry letter writing, as that can send my heart rate up too.

 

[Yan]

It also tells me when I've been doing too much angry letter writing, as that can send my heart rate up too.

Speaking of angry letter writing.. I just finished writing one. And really should rest now and not browse forums!

Spoiler

My HR gets up quite fast when I get up from bed. I can do things like cooking etc for few minutes, then go back to bed and usually my HR returns to around 60. But if I do too much, the resting HR won't go back down for hours. When my HR stays at 80-100 even if I've been in bed for let's say 10 minutes.. Then it's a sign to really try to drop everything. Probably! At least it feels like it.

 

[JemPD]

I can walk about in my house (no stairs) and cobble meals together for me and my daughter, usually mostly ready meals. It's tempting when I've been upright for, say 3 minutes, to do just one more thing, but I can feel OI kicking in and know I need to lie down. Looking at my fitbit at that stage and confirming that my HR has gone over 100 confirms it. It has made me better at taking notice of my symptoms and stopping sooner.

It also tells me when I've been doing too much angry letter writing, as that can send my heart rate

Thanks Trish. Yes this is what I’m hoping it will help me with… Im prone to ‘while Im here I’ll just’ & with the cognitive difficulties added in, I find it hard to remember not to override symptoms to do something that’s really needed, until the symptoms become overwhelming & force me to lie down. So I’m hoping it’ll be a prompter.

Interesting both you and @wigglethemouse use 100

 

[JemPD]

Speaking of angry letter writing.. I just finished writing one. And really should rest now and not browse forums!

Spoiler

View attachment 26934

My HR gets up quite fast when I get up from bed. I can do things like cooking etc for few minutes, then go back to bed and usually my HR returns to around 60. But if I do too much, the resting HR won't go back down for hours. When my HR stays at 80-100 even if I've been in bed for let's say 10 minutes.. Then it's a sign to really try to drop everything. Probably! At least it feels like it.

Yes it’s interesting, I noticed my hr shoots up when I cry, some good sobbing for a few mins takes it up over 120. I not been angry yet (been using the monitor a wk) I trying to stay away from rage makers at moment as hot too much personal stress.

But then being on my feet more than 3 mins takes it to 160!

I using Apple Watch with Tachymon app.
It has 2 alert levels so lvl 1 buzzes every 5seconds & lvl 2 buzzes every 2 secs (haptics). I don’t think I can use 100 as it shoots to at least 110 just standing up. Perhaps I’ll use 100 & 115 & see how I get on.

The trouble is I been in rolling PEM for so long <sigh> just won’t ruddy well allow me to rest.

 

[Trish]

Interesting both you and @wigglethemouse use 100

Sometimes I have to let it go well over 100, especially when I have a shower. I don't wear my fitbit in the shower, but try to stop when sitting drying myself for a bit and rest my head forward on my arms if it goes over 120, waiting until it comes down below 100 if I can. It's all just trial and error really.

 

[JemPD]

Thanks @Trish yes it’s been an eye opener what takes it up that I didn’t expect.

When you say rest your head on arms do you mean your arms on your knees like when feeling faint?

 

[Trish]

When you say rest your head on arms do you mean your arms on your knees like when feeling faint?

Yes, I sit on the loo lid to when drying myself and dressing, and lean forward and rest my head on my folded arms, or lean sideways and rest my head on one arm on the side of the basin. Not for more than a minute of two though, as I really need to be back in bed.

 

[JemPD]

@Trish how often does your Fitbit need to be charged?

 

[Trish]

I think about once a week to ten days, but I keep the charger set up by my bed along with chargers for laptop and phone, so I tend to just plug them in when I think of it. The fitbit charges quickly, from half full to full in a hour or so if I remember to look.

 

[Chandelier]

Just as a side note: My Fitbit Charge 5 is really bad at measuring heart rate spikes.
Here’s a comparison with my Polar H10 Chest strap.
According to The Quantified Scientist on YouTube, the H10 is the gold standard for measuring heart rate at home.

 

[Trish]

Thanks, that's interesting.

I think if we need to monitor our hearts for heart related medical reasons it's best to use medical grade kit with a chest strap. For people like me who want to monitor in a fairly haphazard way to reinforce our symptom based decisions, a wrist worn monitor intended for amateur fitness feedback something like a Fitbit is fine.

It's good we are made aware not to treat it as definitive medical information. I have a finger pulse oximeter which I use occasionally to check if it's giving the same HR as my fitbit. It's usually pretty good, but I agree spikes can be missed, though some do show up.

 

[Chandelier]

I think if we need to monitor our hearts for heart related medical reasons it's best to use medical grade kit with a chest strap. For people like me who want to monitor in a fairly haphazard way to reinforce our symptom based decisions, a wrist worn monitor intended for amateur fitness feedback something like a Fitbit is fine.

I agree.
I find the chest strap uncomfortable while laying in bed, so I only use it on special occasions.
The Quantified Scientist on YouTube has nice slides that compare the accuracy of different smartwatch models.
I wouldn’t buy a new one without first consulting his slides. Especially after realizing how terrible my Fitbit is for my use case of very little movement in a stop-and-go style that results in many spikes.
The Fitbit is much better, when I move continuously for a while.



But another thing to consider: the apple watches are really accurate at measuring heart rate. However, they have much worse battery life and they don’t show continuous messurements.
„Your HR was 65 10 minutes ago“ is rather useless. And putting it in training mode drains the battery even faster.
So, be aware of the pitfalls.

 

[JemPD]

But another thing to consider: the apple watches are really accurate at measuring heart rate. However, they have much worse battery life and they don’t show continuous messurements.
„Your HR was 65 10 minutes ago“ is rather useless. And putting it in training mode drains the battery even faster.
So, be aware of the pitfalls.

I have an Apple Watch and using an app called Tachymon that works with it. Which reads from it. You set your min & max hr for alerts & it gives a haptic on the watch whenever it spikes over your min max.

It’s good but it needs charging every 5 hrs or so if I have it running Tachymon continuously & I don’t know if that’s because it’s an old series 3 watch gifted by someone when they upgraded, or if it just not going to be much good.

So That’s interesting thanks.

I have chargers by the bed but I often forget to take it off.

The other thing is that due to tuning out such a lot of physical discomfort signals continuously, I am already starting to automatically ignore the alerts! I think if it was a sound it would be better as it would hurt! But Tachymon only offers haptics.

Chest straps are a no no for me I have have my bras too big, I just too tender for anything snugly fitting.

 

[Chandelier]

I have an Apple Watch and using an app called Tachymon

Thanks, I checked it out. Seems to be subscription based, $20/year.

The other thing is that due to tuning out such a lot of physical discomfort signals continuously, I am already starting to automatically ignore the alerts! I think if it was a sound it would be better as it would hurt! But Tachymon only offers haptics.

I wonder how your current app compares to Heart Graph by Smoky Cat Software Ltd.
It also allows to set min and max heart rate and you can enable an audio alarm.

It’s good but it needs charging every 5 hrs or so if I have it running Tachymon continuously & I don’t know if that’s because it’s an old series 3 watch

From what I remember from the reviews, all the Apple watches had a terrible battery life with the exception of the Apple Ultra watches which run for ~ 2 days and cost a fortune.

Chest straps are a no no for me I have have my bras too big, I just too tender for anything snugly fitting.

There’s also the Polar Verity Sense, an armband, that should be quite accurate according to that YouTube reviewer.
But for most sufferers, a smartwatch with high accuracy is probably the best choice.
Or like Trish mentioned, a pulseoximeter can do the job.

Those Huawei models seem to score really high. I wonder if they display the heartrate in a more sensible interval than the Apple Watches?
That’s one of the things I really like about my Fitbit.