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Questions about heart rate monitoring

Discussion in 'General ME/CFS Discussion' started by sickntired771, May 1, 2016.

  1. sickntired771

    sickntired771

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    1. I am generally not exceeding my AT even though I followed the mathematical formula. Does it mean I possibly have a lower AT?

    2. Is being close to the AT a problem or anything below is truly safe? Sometimes I feel very exhausted but my numbers aren't in the range but feel like I am overdoing it.

    3. How do we get our hearts healthy if we are always aiming to be below cardio levels and AT? What good is exercising aside from strength if we can't build our hearts?
     
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    1. Firstly, don't worry about targets. No one can live within their heart rate with a disease like ME, as it involves autonomic dysfunction. (Your autonomic nervous system dictates your pulse rate, as does a plethora of other variables not within your control: Infection, blood volume etc). Living within a pulse rate is only possibly in people with burn our or Chronic Fatigue, AKA Nancy Klimas's ideas she has about getting people to stare at their pulse rate to prevent 'crashes' (doesn't work in ME as you crash sitting still on the sofa, irrespective of movement and pulse rate). This is why I say, don't stress about your heart rate in terms of keeping to a 'goal'. It won't work in a chronic neuroimmune disease like ME, for the reasons given above.

    To make you laugh, I have severe ME and without beta blockers my pulse rate is 130 bpm standing up, rising to 180bpm or so after a few mins. Sadly, this is what POTS does to people with ME, and POTS is common in ME and CFS. Another feature of ME and CFS, is that your maximum heart rate is too slow, when exercising. If you are at the higher end of functioning it might be worth considering having someone evaluate your heart rates when walking, exercising gently, or even better have a VO2 max assessment in a specialist clinic or Hospital to see how your body responds to exercise, in a safe environment. (Although rare, some PWME die from exercise and Dr Lerner (CFS specialist in America now deceased) always warned CFS patients never to exercise unless recovered.

    2. Every heart rate is safe if it's within normal limits and appropriate for task in hand. Feeling exhausted in ME CFS is not related to pulse rate. Naturally if you try and move and are more exhausted, your pulse rate will usually rise, sometimes dramatically, so an elevated pulse rate (compared to normal) may be a sign how 'sick' you feel on a given day. Again in ME CFS, there is nothing you can do about this and it's part of the pathogenesis of the condition.

    3. Your heart might be healthy already, although it may lack blood flow or mitochondrial energy due to the disease process no one understands yet. ME involves mitochondrial dysfunction of a type that is new to Science and is being investigated by at least one group as you read this. Other than chronic infection (possible) this lack of ATP affects cardiac tissue and is also associate to oxidative injury. There is no current information that ME CFS have unhealthy hearts in terms of organ health, other than the fact that oxidative stress (long term) is damaging for the whole body and having a chronically activated immune system will be pouring in cytokines and other chemicals, that long term won't do cardiac tissue any good. Other than takes masses of supplements, there is very little anyone can do to reduce this problem,because again, Science isn't clever enough yet to find out why this can happen in ME CFS.

    No one can exercise to get fully fit (build real strength), in ME CFS, if you're being told you can, you're misinformed.
    If they could when in a better phase of health and they didn't relapse ever (e.g no severe pay-back in days, weeks, months, years), then they would be recovering anyway (possible but rare) or misdiagnosed.

    This doesn't mean you shouldn't exercise, if you're recovering from CFS/Burnout and have no symptoms. The danger comes though, is from relapse. Many patients report they feel 'cured only to relapse once more, sometimes to a worse state than before. It doesn't mean it will happen to you, but it might do. We don't know, and that's why we have to be careful.

    Always seek an alternative diagnosis if you feel trapped by your symptoms/body, but it doesn't fit in with the core traits of the diagnosis you have. For example, in CFS the diagnosis is you have 50% or more loss of functioning and that minimal exertion physical or mental leads to relapse for hours, days, weeks, months etc. If you have this, I would not be concerned about heart rates and sticking to a goal, unless you have mild CFS and aren't slammed by your symptoms every day like most (but not all) patients are.

    Hence I can't really comment about building your heart up, as that wouldn't be possible in ME CFS as the more severely affected are bed ridden or housebound and others can do gentle walking in bursts and real exercise (literally to build up muscle in a gym), simply isn't possible.

    I'd just listen to your body and trust your instincts and take things very slowly. No doctor can promise you that looking t pulse rates can enable higher levels of functioning as there is no Science to support this. Currently there is no diagnostic test for CFS or ME, so literally, no researcher knows who has what.

    This is a huge problem when suggestion treatment protocols to patients based on increasing activity, immune therapy or practically anything else.

    Hope that helps.
     
    CedarHome, merylg, Jan and 11 others like this.
  3. sickntired771

    sickntired771

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    Thanks that is really helpful and informative. I guess there is no current way to outsmart ME/CFS :(
     
    Mel9 likes this.
  4. TiredSam

    TiredSam The wise nematode hibernates

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  5. Keela Too

    Keela Too Sally Burch

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    There are various calculations etc. However in my view they are all estimates and so may or may not be good for each individual. So after using the calculations as a starting point I think it is best to then use your personal experience to adjust the critical level for yourself.

    You may need to use a slightly lower number than calculated by the formula.

    More thoughts here: http://sallyjustme.blogspot.co.uk/2015/12/startingHRmonitoring.html
     
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  6. Sidney

    Sidney Senior Member

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    I am late entering this thread, perhaps too late. I have only just started using an HR monitor this week; I agree with everything that @ResearchFirst has said about its limited ( or non-existent) value; but it has raised my consciousness and I think helped me.

    At first I generally forgot to look at it; now when I know I'm being overactive, I've started to check it, and seeing a high number is very salutary. It makes me stop sooner than I would otherwise, as I have a congenital compulsion to rush as fast as possible, and keep squeezing in more and more before I crash.

    But it doesn't register a high number when I'm desperately exhausted, sick and dizzy and already crashing. As @Reasearchfirst said, it does not correlate with the ME situation.But I want to go on with it for its limited use.

    I wanted to ask whether anyone can recommend a particular app for use with the Fitbit Charge 2 so I can see a graph, or log?
    (I am disappointed in the device: I thought I'd be able to set the alarm for when I am approaching my AT. But it seems the alarm can only be set for a time, not a pulse rate.)
    Thanks!
     
    Mel9 likes this.
  7. -Jessie-

    -Jessie- Senior Member

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    @Sidney I also just started using a HR monitor last week, and I agree with your post about continuing use for any benefits I can get from it.

    Sorry, I do not have an answer to your Fitbit Charge 2 question.

    I am using a Mio Alpha 2, which has options to have an audible alarm when going over and under HR limits that I can set, and an option for using flashing colored lights on the monitor to indicate an "alarm" for the same limits. I can set the limits and use both types of alarms/threshold indicators together, just one of those alarm options, or turn them both off. And this can be changed anytime on the app. I like this option. Will turn the audible one off while running errands in public. The free Mio app also shows a graph, plus other info, and allows me to customize and change many of the settings. I am still learning about this device & app, and slowly adjusting to using a HR monitor though.

    I read the helpful link that @TiredSam posted prior to beginning use. I also checked out many other threads on the forum about Heart Rate Monitoring, which have been informative and helpful.

    The first and main thing that I noticed when beginning use last week was that I go over my dang threshold and set the alarm off a lot. Over recent years I have stopped, minimized, or adjusted so many things in my life, and I am already very limited in my activity. :cry: :mad:This new awareness has made me pretty angry... I don't know how much more I can back off on things when I am already down to just the basics and survival mode every day. This first week of HR monitoring has been frustrating.

    Slowly standing up from sitting on the couch and walking to the bathroom, Beep. Slightly bending to grab something out of the fridge, Beep. Standing at the counter for 2 minutes while heating up food in the microwave, Beep. Brushing my hair and putting it in a ponytail, Beep. Getting dressed, Beep. All things more strenuous than these, of course, Beep. I guess I have more adjustments to make. :(

    I was crabby, stressed, and trying to figure out how I can possibly do less and still survive. But then I found this thread, and the posts from @Research 1st and @Keela Too helped me to calm down a bit.

    Perhaps part of my post would fit better in other threads, but this thread has helped me through the past week. So I want to thank you guys for the questions and information you have shared here.
     
    Last edited: Dec 30, 2016
    TiredSam, slysaint, Mel9 and 4 others like this.
  8. Kenny Banya

    Kenny Banya Senior Member

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    I would be interested in finding out from others what their average resting heart rate is.
    My is very low - literally elite athlete territory.

    I have this theory that because of POTS, we are like other people walking 20 kilometres a day, when standing only. So we do our 'cardio' by simply standing.

    Thoughts?
     
  9. Sidney

    Sidney Senior Member

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    Thank you so much for this, @jessie! I am having such a similar experience - if I stopped when going over my AT ( though I only know about it if I remember to check the 'watch'), I would be moving so slowly that everything I do, just to keep daily life going, would not get done.

    On the other hand, I do have to spend so much time in bed, from going beyond limits, that perhaps moving slowly might not be a waste of time...

    I see that I have made an expensive mistake. I thought I'd read the relevant threads on monitors, but I obviously didn't look hard enough.The beep on the Mio,Alpha I see would be annoying, but perhaps one would soon learn to anticipate it? And the app with graph might be great, again just to get an overall picture.

    I think my next step will be to get the Oximeter, which tests blood oxygen and which several people ( I wish I could find the thread!) have said can give valuable information.

    Then there is the Heart Rate Variability test: a very interesting blog on healthrising.org, 'Your Crash in a Graph? 'How HRV testing could help you improve your health' - so sorry, I couldn't seem to copy the actual link, but I got it from someone on this site.

    This is all fascinating, what I can gather through my bad fog. Good luck with your (very good) monitor !
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    About 50 for me.
    I have this one, which vibrates instead of beeps, and you can set how strongly it vibrates:
    https://www.amazon.co.uk/Garmin-Viv...79&sr=8-12&keywords=heart rate monitor Garmin
    I've been very happy with it.
     
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  11. -Jessie-

    -Jessie- Senior Member

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    @Kenny Banya, I haven't figured out my resting heart rate yet. But once I get this monitoring figured out a little better, I will try to remember to post it here.

    @Sidney, thank you for the information on the Oximeter and Heart Rate Variability test. I will look into those too. Good luck to you as well! :)

    @TiredSam, awhile ago I found a post with your link to the Garmin heart rate monitor and researched it more. It was my number 1 pick as I was saving up to get a monitor. I found the Mio Alpha 2, and it seemed to have all of the options I was looking for at a lower price, so that's why I chose it. It is still to be determined how well this Mio will work, the overall quality, and how long it will last. I am keeping the Garmin in mind and if the Mio doesn't ultimately work out for me, I will probably save up the $ and go with the Garmin in the future. Thank you for posting about the Garmin in other threads and recommending it. The information you shared helped me a lot in my process of looking for a HR monitor.
     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    Mine is low too--around 50.
     

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