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

[maple]

Is anyone using Fitbit Sense?

 

[Hufsamor]

I am using visible and finding it very interesting. That's how I happened to get the heartmath monitor- HRV turns out to be more useful than I thought. I don't have a wearable like the garmin, but I thought I might try whatever visible recommends when they get to that stage.

I downloaded visible after I read those posts yesterday, and I tried to measure my hrv for the first time today.
I did struggle a bit..
May you please give me an easy explanation on how you do it?
Are your fingertip actually pressing against the camera ?

 

[Jyoti]

@Hufsamor --what happened when you tried to measure HRV? Did it just not start measuring? Or did you get the message that something went wrong when you finished?

You do have to put a finger (I experiment to find the best one) right over the camera aperture and press a bit. You have to hold still as well. Any jiggling will cause it not to work right.

They have had some problems, I see, with HRV camera measurement. (As do other apps with the same mechanism.) I would gather that the technology is not the best way to measure HRV, but it is easy and accessible. I know they are working on improvements but some days I need to re-do the measurement a few times to get one that is deemed accurate.

Hope you can get it to work!

 

[Hufsamor]

Thank you

first, it was too dark for it to measure anything
I brought on some more light, but got unsure whether I was meant to keep the finger away from the camera, not to block the light.
I then got a measure that seems too good to be true

I’ll try again tomorrow, keeping your comments in mind

 

[Jyoti]

You have to totally block the camera lens, I think. Keep the pressure on, though gently. I think the skin color changes with the pulsing of blood through capillaries and the camera sees that and translates it into HRV. So it has be a 'tight seal.' You don't need any outside light. The measurement happens between your skin and the camera lens.

I then got a measure that seems too good to be true

Yup. Know what you mean. Over time, my observation has been that a lot of what we can glean from these devices/apps is a measure of our own well-being against....ourselves. So I watch to see--am I up or down and how does that correspond with my felt experience? And while I haven't found anything that is impeccable in its assessments, over time there is a fairly good indicator of how I am doing.

I have a good friend who has been severe/bed bound (I am high moderate) and sometimes we compare Garmin readings. Mine do tend to be higher on the whole but sometimes she will see a good day register as pretty high body battery numbers. Though for me, subjectively, her day would be a bad one and I would likely get low numbers.

I often look at others' numbers or reports and think--how can I be so high and yet, so sick? I have pretty much stopped worrying about that and just look for indications of my own capacity on a given day or week.

Keep us posted!

 

[Hufsamor]

I often look at others' numbers or reports and think--how can I be so high and yet, so sick?

(I have a garmin myself, struggling with the thing youre mentioning . I hope to see a pattern after a while. I’m now curious to see if the hrv will add helpful information)

But-I have to show you…
A Norwegian doctor just wrote a book,
and he’s posting his own measurements everyday on instagram.

Those are his measures for the last two days

Here, he’s sleeping until 8, but he sleeps poorly because he ate pizza before bedtime
He then have pizza again for lunch at noon, and is hardly doing anything for a while.
Big stress after the lunch
He does some exercises, and the stress is going a bit down about an hour or two later.

When it’s finally showing some blue, he’s reading. (“Lesing”)
At the end of the day, he’s driving to “Eidsvoll”, where he’s going to work something that seems like a 24 hours shift:

He starts working, getting some sleep around 4-8, and then have a very busy day at work for the rest of the day.

I’ve hardly seen this man getting more than 80 in body battery.
He tries to stay above 25 at the end of the day, but he’s often empty long before.

And those measures are AFTER he had he’s eyes opened for all the stress in his life,
he’s made a ton of adjustments
and written a best- selling book about how to avoid sickness by keeping an eye on the puls
(he’s actually using three different things: oura ring, garmin watch, and a third something I don’t remember )

 

[wabi-sabi]

Are your fingertip actually pressing against the camera ?

Yes, I press my fingertip to the camera and hold it there. Often I lay the phone on my chest and hold it that way so I don't have to use energy to hold it up in the air.

 

[Judee]

When I bought my Garmin Vivosmart, the Battery didn't go up at all for the first week. Seemed like a total dud - then started working.

I hope your watch heals itself,

Thank you to you both. I was mighty discouraged thinking I was going to have to live with this but it is starting to respond a bit more now...at least I got to 21 on the body battery yesterday and the stress numbers are looking more like my previous normal.

 

[Hufsamor]

Thank you to you both. I was mighty discouraged thinking I was going to have to live with this but it is starting to respond a bit more now...at least I got to 21 on the body battery yesterday and the stress numbers are looking more like my previous norma

Maybe it has done a good job pacing itself for a while

A suggestion for those of you who are struggling to get your stress down.
I’m member of a Norwegian Facebook group with me/cfs people with - mostly -garmin, those watches with body batteries (meaning it measures your heartbeats and you heart rate variability and makes a graph of it. Like in the examples above)

One thing people are trying for the moment is a cold shower.
Or to have cold water in your face several times a day, or shower your feet only.
For many, many people it brings the stress down immediately

 

[Hufsamor]

I’m laying down , trying to relax, but the stress is still rather high.
I take a cold shower on my feet, and the stress drops.
When it rises later on, I’m eating dinne.

I don’t always gets as good results as this, but more often than not.

 

[Jyoti]

That graph is a great illustration, @Hufsamor. It's a great suggestion and wonderful when we can see someone working in real time, isn't it? And the cold water to alleviate stress makes sense--I use an ice wrap on my head/neck for the same outcome--because cold does seem to stimulate the parasympathetic which will in turn bring down stress. I may try cold water on my feet next time! Thanks for sharing that 'hack.'

 

[Hufsamor]

You might try feet only, feet and leg, or all the way up the hips.
depending on how much you care to dress off and on.
And keep an eye on how you respond.

ice packs are a clever idea as well

 

[Nord Wolf]

I got a new Garmin watch, Venu Sq2. On the watch I clicked on activate alerts for irregular heatbeat and a high heartbeat threshold. However, even in a sport mode like yoga, my heartrate went to 116 and no alarm sounded. I'm terrible with this technology, just horrible at it. With my eyesight being what is I really need this watch to sound off when I hit my HTR threshold.
Anyone know what I'm doing wrong, and or how to get the watch to sound an alarm/notification when reaching a threshold?

 

[Hufsamor]

@Nord Wolf I don’t have a venu, but on my watch, I can go in and adjust the alert on yoga. Then I start yoga whenever I’m going to do anything.
On my unit, I push the button on bottom right on the watch,
Choose the * sign at the bottom
Choose activity
Yoga
Settings
Alerts

 

[Jyoti]

A quick update related to both my Garmin BB and the Visible app.

I have been in a pretty profound crash for the last month and it has allowed me to see how both these technologies recognize, help or hinder--at least I have some new insights.

Garmin Body Battery: there is the obvious benefit of being able to see your 'charge' dissipate in real time, being able to say--I am in dangerous territory for me and I need to lie down right now. But both through my own observation and that of a couple other people, it now seems that another measure that may be more helpful/accurate is how fast or slowly the BB drains or recharges.

During this crash, I have watched it plummet doing nothing but being propped up in bed. Whereas in better times, it might take all of a fairly active day to slowly lose 60 or 70 points, it has been dropping that much in no time (3-4 hours) and with activity like going to the bathroom or getting water to drink. The opposite is true of re-charging. While I generally (and of course we all have our own 'norms') charge up to 100 in a decent night's sleep, during this crash, I often see it laboriously refilling just 20 points over 10 hours of (attempted) sleep.

@Hufsamor has highlighted the connection of the BB to the 'stress' reading, and it seems accurate. A good metric to keep an eye on. And I have found, as noted, that watching the resiliency of the BB gives me really helpful info about my overall state--how to proceed over the next few days.

Visible: it has been pretty accurate (though not entirely--I got just a couple of really high 'stability score' readings over the last month that were subjectively far from reality) throughout, telling me that I needed to lie low and take it easier than usual. This makes senses, given that it includes recorded symptom severity in its assessment, along with HRV, heart rate and self-reported sleep success.

 

[Hufsamor]

Visible: it has been pretty accurate (though not entirely--I got just a couple of really high 'stability score' readings over the last month that were subjectively far from reality) throughout, telling me that I needed to lie low and take it easier than usual. This makes senses, given that it includes recorded symptom severity in its assessment, along with HRV, heart rate and self-reported sleep success.

Yes, the advice I’ve got from others are…
Live after the worst measures…
If your body battery tells you to take it slow, but your HRV on visible gives you thumbs up, live after what the body battery tells you.
And vice versa, if the HRV tells you to take it easy but you body battery are ok, plan your day after the HRV.

 

[hapl808]

Yep. Unfortunately my Garmin just always shows my Battery declining fast if I'm not in bed, and sometimes even when I'm in bed. Occasionally I'll go through periods where it recharges more during sleep, and other times I'm lucky if it makes it to 30 overnight.

It's helpful when trying to find effective treatments, but I've mostly failed at finding anything to improve my Battery or Stress numbers consistently.

 

[Jyoti]

It's helpful when trying to find effective treatments, but I've mostly failed at finding anything to improve my Battery or Stress numbers consistently.

This totally sucks. I am so sorry. It has to be so discouraging. I wonder if it ends up being at all helpful or if instead you find it distressing to see how low your energy is?

 

[hapl808]

This totally sucks. I am so sorry. It has to be so discouraging. I wonder if it ends up being at all helpful or if instead you find it distressing to see how low your energy is?

Hmmm. I guess still helpful, as I'm an eternal optimist and nihilist at the same time. In other words, I have a spreadsheet that tracks every supplement I take and constantly review if fisetin and fenugreek will work synergistically to protect against glutamate toxicity that is potentially causing my PEM crashes or if d-limonene will remodel gut bacteria and change neurotransmitter generation…and simultaneously believe that I will never solve this and will continue to worsen.

Every once in awhile the HR will drop into the low 80's (good for me) and Stress will drop below 50 when I'm out of bed, so I'm eternally chasing overall improvement. I've also found that if I stop all anti-pathogen supplements, my Stress and Battery get better…temporarily. Then eventually all my symptoms worsen. If I take anti-pathogen supplements, my Stress and Battery get worse, but my symptoms stabilize. So I'm always chasing some anti-pathogen treatment that will hold.

So yeah - discouraging, but I'm such a data nerd that I can't imagine stopping.

 

[Judee]

I got a new Garmin watch, Venu Sq2. On the watch I clicked on activate alerts for irregular heatbeat and a high heartbeat threshold. However, even in a sport mode like yoga, my heartrate went to 116 and no alarm sounded. I'm terrible with this technology, just horrible at it. With my eyesight being what is I really need this watch to sound off when I hit my HTR threshold.
Anyone know what I'm doing wrong, and or how to get the watch to sound an alarm/notification when reaching a threshold?

I don't know if your watch will have the same settings on the app as mine because I have Vivosmart 4.

On mine, I go into the app on my phone,

-hit the 3 menu bars in the upper left hand side of the screen,
-then Garmin Devices,
-and choose the watch you're using,
-Sounds and Alerts,
-Abnormal Heart Rate Alert,
-and then turn on High Alert and Low Alert (if you want that one too) by sliding the slider for each. Mine turns blue when activated.
I think this is also the screen where you can also change the High and Low Alert Thresholds by tapping on first High, and scrolling up or down as you wish and selecting done. Though on mine the lowest I can set the High Alert to sound is at 100 bpm.

You can then then do the same for Low alert if you choose.

To get out of that screen you can use the arrows at the top, swipe from the left or just close the app and reopen it.

Hope that helps some.