Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

[gbells]

Are you following the protocol of sitting, resting a few minutes and breathing normally for all the readings? I find that the supine (laying down) readings aren't accurate but the sitting ones work.

 

[Mary]

Have you gotten your Corsense?

Yes, but haven't been able to sit down and figure it out yet. It might be very simple, but I've often found that when I think something is simple, it usually ends up taking a lot of energy to sort out!

I understand not wanting to spend the money a Corsense or other device right now - I just thought the Elite free app might be more accurate than welltory - perhaps worth an experiment?

I believe the Elite app can be used the same way as the Welltory, without having to buy the Corsense or other device.

 

[Jyoti]

I believe the Elite app can be used the same way as the Welltory, without having to buy the Corsense or other device.

Oh...I just downloaded it and it asked me where my device was! I will look into this further. Thanks!

Are you following the protocol of sitting, resting a few minutes and breathing normally for all the readings?

I am. And every day same time, same place, same position. Weird. I had decided that it was just garbage until you started having helpful results @gbells.

 

[Mary]

Oh...I just downloaded it and it asked me where my device was! I will look into this further. Thanks!

You know what - I might be wrong about this! I know it works with lots of different devices (Heart Variability Monitors and Elite HRV Compatible Monitors ) but not sure about the phone. I had assumed, perhaps incorrectly, that it would work with your phone.

You might email the Elite company and ask them - I had a question before I bought the Corsense and they responded within a few hours.

 

[Jyoti]

I believe the Elite app can be used the same way as the Welltory

Apparently not. They even have a screen on their app where they explain why you can't use the phone or even most wrist wearables.

 

[CedarHome]

I know 10 repetitions may not seem a lot for some people but to me and how often I've been bedridden off and on, it feels like a miracle.

CONGRATULATIONS!!!! on getting back to some weight bearing exercise! that is fantastic!

and thanks for sharing your experience with HRV, it's really helpful to know what it can and doesn't do.

 

[CedarHome]

After 3 days of multiple HRV results daily ot seems to map pretty well too how I feel about my energy. My issue with heart rate was while it showed physical exertion it missed the mental aspect, HRV seems to accomodate the impact of both. So the question for me now comes how the heck do you monitor this all day long and get an alarm to go and lie down?

I *think* the thing to do is to combine HRV (morning reading) with heart rate monitoring (continual day time reading).

I'm using a fitbit for the HR but there are many choices out there (garmin, apple watches, etc) that do HR. You can set the fitbit to buzz at a certain threshold.

HRV isn't designed to monitor activity- it's designed to monitor how well you recover from activity (I think.)

I found this article helpful:
https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/
and this:
http://www.cfsselfhelp.org/library/...our-heart-rate-to-stay-inside-energy-envelope

And look there's this also:
https://me-pedia.org/wiki/Pacing_with_a_heart_rate_monitor

Good luck, keep us posted!

 

[CedarHome]

Are you following the protocol of sitting, resting a few minutes and breathing normally for all the readings? I find that the supine (laying down) readings aren't accurate but the sitting ones work.

Interesting! I only do supine readings.
Too tired to sit up lately! Guess I'll have to experiment.

 

[Abrin]

Yes, but haven't been able to sit down and figure it out yet. It might be very simple, but I've often found that when I think something is simple, it usually ends up taking a lot of energy to sort out!

I understand not wanting to spend the money a Corsense or other device right now - I just thought the Elite free app might be more accurate than welltory - perhaps worth an experiment?

I believe the Elite app can be used the same way as the Welltory, without having to buy the Corsense or other device.

Mary, if you need help figuring out your Corsense feel free to hit me up in PM.

 

[Mary]

Thanks so much @Abrin !

I'm getting my second Pfizer jab on Wednesday and so I'm rationing my energy right now, it's an hour's drive for me both ways and there have been things I've wanted to get done before I go, and I figure I'll be somewhat incapacitated afterwards, so it may be another week or so before I get to this. But I will definitely take you up on your offer if I get stuck or have questions!

 

[Abrin]

Having read this entire thread--several times-- as well as Cort's article on the Oura ring, I keep circling a sense that there is much of value for me here, and yet not quite grasping how to make it work. Like @gbells, I have only the free Welltory option for now--because I want to see where and how there is some correlation to my felt experience before I dive in and spend a lot on a new device.

I know different apps use different ways of describing the data they record. Welltory tells me repeatedly that I have super high HRV scores, that I am 'running like a well-oiled machine' and that "now is a great time to hit the gym for an intense workout.' Given that I have been nearly paralyzed at the times of these readings, you will understand why I am confused. @keepswimming points to a piece (and there are many which say this) that acknowledge that at some times, when the body is totally overwhelmed you may get a high HRV. All the time though?

And then I had my first jab on three days ago and felt fine (my baseline awful normal) throughout the first 24 hours--high HRV scores. Then things got a tiny bit worse. And interestingly, my HRV scores plummeted. I got messages telling me 'you might be getting sick' and 'resist the urge to do anything other than rest.' It put me in mind of Cort's experience with the Oura ring and an approaching virus. I am sure my body is responding to the vaccination provocation and that, at least, seems to be showing up in the Welltory HRV scores.

Unfortunately, HRV is way more complicated that high HRV = good and low HRV = bad. Because of this it makes it really hard to sum things up technically in a short paragraph.

Tracking your HRV is just another way to learn about your bodies patterns. It is a lot like normal pacing but instead of keep tracking of having to guess how you are feeling through internal mental searching you can use mathematical numbers instead.

No matter what device or app anyone decides to use it is going to take a LONG time before that data will be really useful to people. While the EliteHRV app morning reading snapshot was able to give me an idea on whether I needed more rest that day it took me at least an entire year of data until I was able to start to see patterns in my daily behaviors compared to the long term numbers I was getting back.

My advice is that if you have something that works and is currently within your budget then stick with it for at least six months and then sit down and look at that data with a long-term view.

 

[Abrin]

Thanks so much @Abrin !

I'm getting my second Pfizer jab on Wednesday and so I'm rationing my energy right now, it's an hour's drive for me both ways and there have been things I've wanted to get done before I go, and I figure I'll be somewhat incapacitated afterwards, so it may be another week or so before I get to this. But I will definitely take you up on your offer if I get stuck or have questions!

No worries!

I promise I've got your back if you need me. If you end up figuring it out on your own that is good too! Either way I'll be here cheering you on. ❤︎

 

[Abrin]

After 3 days of multiple HRV results daily ot seems to map pretty well too how I feel about my energy. My issue with heart rate was while it showed physical exertion it missed the mental aspect, HRV seems to accomodate the impact of both. So the question for me now comes how the heck do you monitor this all day long and get an alarm to go and lie down?

I think you'd have to a specific device that monitors all-day as well as has an alarm. I know the device I am currently using doesn't do either. But maybe someone else knows of a device out there that does?

 

[Learner1]

I'm flabbergasted that nowhere in this discussion is that commonly prescribed drugs for ME/CFS dramatically affect HRV...

Here are 3 readouts from my Oura ring. I'm the same person, with similar symptoms and energy, but the difference is whether or not I'm taking a beta blocker or Benadryl or both... note that the scales, average and max HRV are very different on each of these days...

The HRV studies that have been done are on patients not taking any meds. But, I honestly haven't found HRV to be useful st all due to the effects of the meds I'm on, unfortunately.

 

[Abrin]

I'm flabbergasted that nowhere in this discussion is that commonly prescribed drugs for ME/CFS dramatically affect HRV...

<snip...>

The HRV studies that have been done are on patients not taking any meds. But, I honestly haven't found HRV to be useful st all due to the effects of the meds I'm on, unfortunately.

This a good point. There are lots of outside factors that can affect someone's HRV reading. I can totally see how if someone was taking specific drugs that HRV tracking wouldn't be helpful for them. Honestly, it just never occurred to me because I am not on any drugs that would affect my readings. I also take a very long view when it comes to look back on my data so overly high numbers and overly low numbers end up being thrown out.

 

[hapl808]

My heart rate is almost always high, so I've definitely been interested in medications like beta blockers that might lower it. I have as of yet to try any, though.

 

[gbells]

I'm flabbergasted that nowhere in this discussion is that commonly prescribed drugs for ME/CFS dramatically affect HRV...

They do take a baseline so if you are your usual drugs that should be taken into consideration. I take a bunch of things and have found the position critical but not the drugs.

 

[gbells]

I read some information about the Oura ring. I think there could be a problem with immunotherapy because finger inflammation occurs which changes the diameter of the ring so you couldn't use it during periods of high inflammation or it might be difficult to remove. Best to stick with HRV monitoring on the phone.

 

[Learner1]

They do take a baseline so if you are your usual drugs that should be taken into consideration. I take a bunch of things and have found the position critical but not the drugs.

The issue is not the baseline. It's variation based on taking drugs that have dramatically different impacts on HRV.

I read some information about the Oura ring. I think there could be a problem with immunotherapy because finger inflammation occurs which changes the diameter of the ring so you couldn't use it during periods of high inflammation or it might be difficult to remove. Best to stick with HRV monitoring on the phone.

I don't really find inflammation has anything ykndo with it.

My heart rate is almost always high, so I've definitely been interested in medications like beta blockers that might lower it. I have as of yet to try any, though.

Beta blockers can definitely lower pulse and blood pressure. So can other POTS meds.

This a good point. There are lots of outside factors that can affect someone's HRV reading. I can totally see how if someone was taking specific drugs that HRV tracking wouldn't be helpful for them. Honestly, it just never occurred to me because I am not on any drugs that would affect my readings. I also take a very long view when it comes to look back on my data so overly high numbers and overly low numbers end up being thrown out.

Drugs that ME/CFS patients commonly take, including medications for mast cell activation syndrome and orthostatic intolerance Can dramatically affect HRV. I am absolutely surprised that none of these researchers is taking this into account. Throwing out high and low numbers ends up with meaningless data because if you throw out the 15 to 20 and the 75 to 120 numbers, you end up with the average of 20 to 75, or an average of that which is around 35 to 40. Not sure what that tells you. From the information that Oura provides on HRV, it has to do with your overall fitness, and your heart's ability to respond to the stresses of daily life. If one is on meds that artificially lower HRV as well as artificially raise HRV it doesn't really tell you how fit you are at all.

 

[junkcrap50]

Well which drugs affect HRV? Is that known? Is there data on HRV and drugs? I’m sure it’s likely medications can affect HRV, and people may be aware of it in a general sense. But I doubt there is info out there saying “this particular drug raises/lowers/affects HRV.”