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Heart Rate Monitor Factsheet - Workwell Foundation

Discussion in 'Lifestyle Management' started by Andy, Mar 5, 2021.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Moderators note: This post has been copied from the "USA: News from the Workwell Foundation." thread.

    From an email.

    NEW RELEASE
    Heart Rate Monitor Factsheet

    Workwell is pleased to announce our new factsheet on Activity Management with a Heart Rate Monitor!

    Heart rate monitoring provides real-time biofeedback that promotes symptom awareness and control. When heart rate is associated with symptoms and perceived exertion, it can be a powerful tool to manage post-exertional malaise (PEM), i.e., worsening symptoms after activity (for more, see our PEM Time Course Factsheet).

    We include advice on using your own CPET findings and what to do if you have not yet had a CPET.

    We urge people to avoid using heart rate formulas for estimating the anaerobic threshold, the point at which energy production becomes less efficient. Instead, we urge people with ME/CFS to use resting heart rate (RHR) as the relevant benchmark for activity management.

    We reviewed the heart rate factsheet discussing “the why, the how, and the what” in our recent VIP webinar on activity management with a heart rate monitor. The webinar was such a success that we will be providing a second webinar that will be open to more participants in April - stay tuned!

    Link to their educational material, including the factsheet, https://workwellfoundation.org/resources/#edmat
     
    Ariel likes this.
  2. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I think this is interesting....taking my measurement I have a baseline of 58. Going by this logic I should avoid activity that takes me above 73? This means no showers (95bpm)

    not sure I think this is entirely practical but it says that perhaps my keeping activity below 100 may be a bit too generous?

    The part about measuring rhr after waking doesn’t seem to be straightforward ..mine always rises over 10bpm from my baseline at the point of waking and this doesn’t drop right down while I’m lying down ..perhaps I’ve not got what they mean by that bit?
     
    Ravn, alktipping, Michelle and 7 others like this.
  3. Trish

    Trish Moderator Staff Member

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    According to my fitbit my resting heart rate varies around 70. That means I shouldn't go above 85 for more than 2 minutes at a time before resting and bring it back down below 80. That's a very narrow band. Keeping below 85 is impossible since just putting a cardigan on while sitting can take it up to 90, and having a seated shower and the accompanying undressing and dressing (sitting) takes it up to about 120 if I do it, as now, without help.

    I have, however, found that trying where possible to sit with feet raised or lie down between stages of getting a meal does help. And I agree with their description of immediate effects of trying to keep going for more than a couple of minutes - breathlessness, dizziness, nausea.

    I'd say it's pretty accurate for me. Just happens that life's necessities get in the way of living up to it.
     
    pteropus, Mariaba, JemPD and 13 others like this.
  4. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    According to Garmin, my average heart rate is 94 for last month. According to Garmin, my resting heart rate for the month is 60. So I should try to stay below 80, which is next to impossible. Today, I put in a single load of laundry and my heart jumped up to 103. When I lay down, it takes about an hour for my heart to stop having tachycardia spells where it goes over 100, then back down to a slow pace.

    Now it is time to put my clothes in the dryer. My heart jumped up to 99. Back to resting. I get an alarm when my resting heart is over 100 for a few minutes. My heart has trouble returning to a slow steady cycle after I've been busy. It's like my brain is a teenager throwing the gas to his car because he likes to hear the motor racing.

    After all these years I still find this disease horribly frustrating. I'll be very pleased when Workwell finds some drugs that give me more freedom.
     
    Mariaba, Aslaug, Ravn and 11 others like this.
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I found it interesting but would also struggle to apply it. Knowledge is power & all that but in this case I think this factsheet would be far better aimed at physios, GPs etc to demonstrate the threshold Workwell think patients should stay below and how much support they should have to stay within the ideal HR for them.

    I also think there's an assumption or oversimplification happening. All sorts can screw up my heart rate - a sudden warm spell of weather, allergy season (hazel is the culprit currently) and I'm sure there are others.

    Also if females took the rhr figures measured during the last week before a period that can raise that figure slightly.

    I'm also not at all happy with point number 7. Basically if you follow their guide your short and long term PEM symptoms will resolve. No, sorry PEM isn't nearly that straightforward or your using some different definition if it. Also we don't know that PEM stops just because the symptoms do.

    I concede that keeping the HR down is a good thing but I think they're giving a false impression of how easy it is to establish RHR, how easy it is to control it and making assumptions about how much we really know about PEM.
     
    vsou, Simbindi, JemPD and 13 others like this.
  6. Starlight

    Starlight Senior Member (Voting Rights)

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    Are the heart rate monitors we can buy commercially even sensitive enough to maintain such a narrow margin of error? I've read up and some felt just gesticulating and waving their hands was sending heart rate much higher, or at least sending the recording higher. Does anyone have a monitor they feel will be sensitive enough to accommodate this level of fine detail capture?
     
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    None of the one that I have seen is.
     
  8. Ravn

    Ravn Senior Member (Voting Rights)

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    Disappointing that they keep pushing that linear time course conception of PEM. Parts of it are good but others are at the very least highly misleading.

    Yes, immediate symptoms are different from short- and long-term ones (though many of us would call the immediate syptoms fatiguability, not PEM).

    And yes, PEM can be of shorter or longer duration.

    But no, there aren't any well-defined, separate symptom clusters for short- and long-term PEM, it's perfectly possible to get all the so-called long-term symptoms mixed up with all the so-called short-term symptoms no matter the duration of PEM.

    Also, it's possible to get both short- and long-term PEM without ever getting any immediate symptoms at all. This is relevant to point 6 which claims it's safe to continue an activity which feels easy and doesn't create any immediate symptoms. No, it's not always safe. For me immediate symptoms are no guide at all except that when I do get them I'm waaaayyyy beyond my limits and will have a very prolonged spell of PEM. To avoid PEM I have to stop well before any immediate symptoms occur.

    It's unfortunate there's no mention of POT on the infosheet. I recall someone from Workwell discussing it elsewhere, basically saying that the RHR+15 doesn't work if you also have POT and you'll have to go by trial and error.

    The overall message, that trying to keep your heart rate from spiking for too long, is a good one. I'm pretty sure it's helped me stabilise my condition (even though RHR=15 is impossible thanks to POT, and of course anecdotal n=1). But the detail is too formulaic, and the conclusion in point 7 - stay under RHR+15 and your PEM symptoms will resolve - is overly optimistic (to me resolve implies elimination). Sure, the HR monitoring can help you reduce the number of physical-exertion-induced PEM events and associated symptoms but in real life reduction is all we can realistically aim for. And then there are all the other PEM triggers not linked to HR.
     
    Medfeb, Hutan, RoseE and 11 others like this.
  9. Aslaug

    Aslaug Moderator Staff Member

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    The most my rhr has changed during my period is 14. That eats up nearly all of my freedom if I were to follow this.

    With orthostatic intolerance I don't see this as realistic at all. And as others have mentioned, it's rather optimistic re PEM. As with others, if I have immediate symptoms that means I am already past my limit. Case in point, I have been enjoying walks in the nearby park the last few weeks, a route I can do fairly easily. It has been fine until two days ago when it wasn't and caused a bad crash. I felt fine during the walk, but throughout the rest of the day I deteoriated.
     
    Starlight, Ravn, MEMarge and 6 others like this.
  10. Trish

    Trish Moderator Staff Member

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    I agree it's too formulaic. But I also think as a starting point for learning your body's reactions to activity it can be useful. I have been trying for a few years now to take more notice of what my heart rate is doing, and to come closer to their 2 minute limit to aerobic activity. (except when an activity like showering precludes stopping and lying down). Combining that with reducing my daily step count limit has, I think, contributed to a significant reduction in episodes of PEM.

    As to accuracy of wearable trackers, mine does do odd things sometimes, but when I check it against the reading on my finger pulse oximeter, it is a lot of the time remarkably accurate. If I think it's wrong, I check with finger on pulse.
     
  11. kilfinnan

    kilfinnan Established Member (Voting Rights)

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    I use a chest strap paired to a watch and it's 100% accurate. By far the best thing I've ever done to help my condition.

    There were too many errors with my Fitbit. Sold it and bought Polar strap and watch.
     
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  12. Trish

    Trish Moderator Staff Member

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    Is the chest strap uncomfortable?
     
  13. JemPD

    JemPD Senior Member (Voting Rights)

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    I'm also interested to know what they say about anxiety. I do deal with an unavoidable amount of stress & my HR rises unpredictably then. I also feel physically MUCH better when stressed, presumably due to stress hormones like adrenaline, so a lot of things that would feel very hard when calm & relaxed feel easy when i' stressed, especially if i angry/irritated. So that cant be relied on as a measure of whether an activity is ok or not... As Ravn says...
     
    Starlight, Ravn, MEMarge and 4 others like this.
  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I'm not so sure.

    Don't get me wrong, I think Workwell do important work and are taking a serious look at how exe and HR might affect a pwME. I also think HR monitors have an important role to play. But.....

    I think it's actually very misleading for a newbie. It gives a false, overconfident impression of what we actually do and don't know & that can be very dangerous indeed.

    I used a lot of different measuring tools in my career and the one thing they all had in common, no matter how good or bad they are, is that people often misunderstood or placed undue emphasis on what was actually being measured.

    All that's happening here is we are looking at HR. That's useful and one of the few measurables available to us but is only one aspect of a much murkier picture.

    We know HR can trigger PEM but it's not the only trigger. The range of symptoms that make up "PEM" are only the noticeable ones and much more could be happening beneath the threshold of what's noticeable to us.

    I also worry about the false sense of control this can give. Especially to the newbie. Humans like control and like measuring things but in situations where we are overconfident in our ability to control something and when our response to measurements aren't successful this can lead to self blame and guilt in some people.

    It's something to try & think about but I wouldn't rely on it.
     
  15. Mij

    Mij Senior Member (Voting Rights)

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    Agree. I don't get immediate symptoms, my PEM experience is delayed by 14-16 hrs. It's taken me years of trial and error to calculated my 'energy window' to avoid PEM altogether, and it's not calculated by a HR monitor.
     
    voner, ahimsa, Ravn and 3 others like this.
  16. Trish

    Trish Moderator Staff Member

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    I don't see the immediate symptoms of exceeding what I guess is my anaerobic threshold as part of PEM.

    Feeling breathless, muscle fatiguability, lightheadedness, increased pulse rate, etc that occur after a very few minutes activity standing or walking are, to me, signals I need to stop and rest.

    If I don't push on and overdo activity, and don't ignore these symptoms more than a few times a day, I am less likely to get PEM the next day.

    It is only when look back after an episode of PEM, and see that i have pushed through this symptom threshold and ignored these symptoms too much, that I could, if I interpret it that way see the early symptoms as a prelude to the later PEM.

    Does that make sense?

    Using heart rate is only part of the picture. I think its greatest value for me is that it gives me objective evidence that I'm doing too much and need to take a rest break. Before I started using it, I would more often keep pushing on doing necessary stuff. HR enabled me to give myself permission to stop and rest. That I wasn't just being a wimp and imagining I was overdoing it.
     
  17. sb1

    sb1 New Member

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    What Garmin device do you use?
     
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  18. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    Garmin Vivosmart 4
     

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