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?