Using Heart rate monitoring to help with pacing.

I've been heart rate monitoring seriously for about 6 months now and found it incredibly useful. Initially it felt really restrictive because I was continually going over my AT. Now I feel lost without it.

I use a Mio Alpha 2. I chose this because it doesn't need a chest strap has reasonably big display and good battery life. It can be set to beep or flash when I go over my AT.

The last month or so I have also been measuring my heart rate variability first thing in the morning and that is also useful.

The main thing I have found is that keeping recordings over a period of time is most useful because you can see patterns of how activity physical cognitive emotional effects heart rate and heart rate variability.

I've also modified the way I do things quite considerably as a result of monitoring my heart rate. I'd say that as result I feel a bit more in control and my symptoms are a little more stable.

The way I look at it is that it has taken me many many years to get into the position I am now. I have been slowly deteriorating with occasional sharp deteriorations. So I expect progress to be slow if I'm going to start getting out of this hole to any degree.

There is a Facebook group pacing with a heart rate monitor specifically for people with ME and I find that very useful too.

 

Attached is an example of a graph for the whole day on Monday from the Mio app. (Ignore the 1hr at the bottom, it's a glitch in the app)

I also use the sports gear tracker app which records my heart rate as I go along and my average heart rate as I go. Average heart rate as I go along is very useful because it can be used to warn me to rest more if I have been too active earlier. I know that if I keep my average heart rate at 75 or under then my symptoms are less likely to be exacerbated.

 

The ones I've joined have been too focused on "GET-lite". Basically aimed at trying to improve their disease by increasing activity levels, albeit being responsive to symptoms and heart rate thresholds. While it might not be as physically harmful as real GET, it's still based on unsubstantiated (and contradicted) beliefs about exercise, and gives people false hope while pressuring them to improve themselves.

I suppose a proper pacing group with heart rate monitoring would be too boring, with the lack of hype or goals beyond not crashing. Or maybe such groups just all inevitably get permeated with people who believe they can or should cure themselves. It's an attractive message to buy into, and the people promoting it are usually a lot more active than the ones who really need to pace - it can be hard to keep refuting them, when too ill.

Anyhow, my general impression is that Facebook groups for any aspect of managing disease invariably suck The format doesn't help either.

 

@Valentijn and @Trish I'm not a fan of Facebook either. It does seem to bring out the worst in some people and it can be difficult to find information that you have previously found useful.

However I have found the pacing with a heart rate monitor group one of the more "mature" groups and useful for its discussions of the various monitors available. The monitors are really designed for people who are fit and well so it's always a trade off between the features that you want and the ones you can live without. It's the same with the apps available, but it is helpful to hear about the experience of others when using them.

Also useful has been the discussions around the record keeping that members maintain to assess progress over time. One of the members kindly devised a Excel spreadsheet (with some complex formulas which are way beyond me) for calculating an energy score based on average heart rate for the day which I have found very useful.

The emphasis of the group is on calculating and then staying under your AT. GET is recognised as harmful, often from the experience of members. Almost inevitably, and certainly in my case, using a heart rate monitor has resulted in a reduction in activity. It has also raised my awareness of my orthostatic intolerance and likely POTS (though persuading my GP is a different matter!). When I first started using a monitor it was a massive eye opener as to how high my HR goes just cleaning my teeth or sitting up in bed.

The discussions around research is also interesting, for example the Workwell conceptual model which I think has been previously mentioned. https://academic.oup.com/ptj/article/90/4/602/2888236?searchresult=1 and of course the ICC which also recommends use of a heart rate monitor.

 

Yet many members of those groups are still trying to methodically increase activity levels as in GET (typically while calling it pacing - it isn't), and encouraging others to do the same. I've probably been in the group you're talking about it, and the benefits weren't worth listening to the bad advice.

I can get heart rate monitor advice, spreadsheet tips, and info about heart rate variability just as well on forums, and without the conversation getting dominated by the GET-lite crowd. It's simply too agitating for me to see the misinformation being propagated in those Facebook groups.

It's probably not their fault. A lot of BPS clinics realize how unpopular GET is, and that pacing is promoted by other patients, so they have rebranded GET as pacing. But most of the patients in Facebook groups are singularly uninterested in the science showing their approach to be ineffective, or widespread reports of the harm it can do. They'll probably figure it out eventually the hard way, but trying to convince them before that happens is about as effective as joining a cult to try to talk sense into true believers.

 

Sounds like I need to keep my policy of avoiding Facebook. I've never got why I would want to have someone "PR'ing" themselves about how great they are ...I don't care if a friend of a friend are at the shops or has seen a lovely stray cat in their garden

I assume Twitter is just a similar more incoherent poorly thought out thing...judging by Trump

 

@Trish briefly, heart rate variability is the time between each beat of your heart. Generally speaking higher heart rate variability is an indicator of better health. This is because it indicates that the body is more responsive to stressors and the changes within the body systems needed to maintain homeostasis. A spike or a drop-in heart rate variability is an indicator that the body is not responding as well to stressors. Heart rate variability can also be an indicator of whether you are in sympathetic or parasympathetic dominance.

If my morning heart rate variability drops or spikes I use it as a warning that I need to rest more than usual. This is even if I am feeling relatively ok, (for me) because my symptoms may be masked by adrenaline. Attached is a screenshot of my HRV readings over the past month or so. You can clearly see where my heart rate variability dropped/spiked as a result of a doctor's appointment, stressful phone calls etc

As I mentioned above what I'm looking to do is to look for trends over time so that I can see the effect of pacing, meds, supplements, food etc on my heart rate and heart rate variability. I also use my heart rate figures as a rough measure of my sleep and again it is useful as a record of changes over time with for example the introduction of a new medication. I'll see if I can find some web links for you on heart rate variability if you are interested.

@Valentijn we will have to agree to disagree about the Facebook groups. I'm only a member of one, so can't comment on any others that you may have been a member of. Just to say that the group I'm a member of doesn't promote GET lite. Different people find different methods of accessing information helpful. And on a more wider note the closed Facebook group for our local patient/carer group has provided support for people who otherwise have been very isolated. Facebook is a far from ideal platform, but it is the best there is in some circumstances.

 

Just to add if you like accessing information via podcast, Elite (who have a good heart rate variability app) have a whole series on heart rate variability for those who would like a deep dive into the topic. The podcasts are aimed at people who are fit and well, nonetheless the ones that I have listened to have been interesting.
https://elitehrv.com/podcast

Sweetbeat http://sweetwaterhrv.com also have useful HRV information. Their app for iOS looks to be pretty good but if you are on Android I wouldn't bother buying it as it has much reduced functionality.

 

Determination of exercise training heart rate in patients on β-blockers after myocardial infarction

http://journals.sagepub.com/doi/abs/10.1097/01.hjr.0000209813.05573.4d?journalCode=cprb

Paywalled, so can't read it all, but that seems to be the modified formula they used.

Edited to add: the answer to your question might be useful

the modified formula that I've found was : .6 - .7 (maximum heart rate - resting heart rate) + resting heart rate (2)

from https://www.escardio.org/Journals/E...stablish-an-exercise-plan-in-cardiac-patients

I'm not sure if the (2) means squared or not, so i'll ask one of our less brainfogged math challenged members to weigh in before deciding the answer.

 

Is it just a reference? There seem to be other parenthesised numbers, with numbers ranging 1 to 5, and there are 5 refs.

 

Thanks Trish and Barry

Spoiler: a novel excuse

In my defence,

• the reference numbers go 1, 3, 2, 4, 5!
• my instant mash was demanding 475ml of hot water in a jug that goes up by 20ml increments
• I'm an idiot

Thus ends the instant mashed potato defence for math deficiency m'lud. Pathetic, but creative.

Seriously though, it's hard to find anything about heart rate and beta blockers that is useful for those of us on beta blockers.

I did it by working out the range out the range for 'normal' people and making adjustments by the effects.

 

@Daisy could you tell us the name of this group, please?

 

Sorry for the delay in responding @Louie41

The FB group is "ME/CFS pacing with a heart rate monitor"

If you ask to join please be patient, the mods are very busy as it is a popular group.

Most recently I've found the group very helpful in finding my way round a new app I'm trying HRV4TRAINING. One of the group members is also in contact with the developer.

Happy new year to all here.

 

Another good description of HRV here and summarised

 

Possibly I'm really old, but I remember the time when if you wanted a particular thing, with certain features being important, you asked someone who knew about that type of thing, and probably sold them.

Does this type of person still exist - specifically with reference to wrist HR monitors - coz google reviews, youtube and manufacturers websites just aren't cutting it for me.

I don't need swimming, biking, golf, maps, or running functions, I don't really need or want any of that, what I do want is something that can easily be set up so it will sound an alarm (audible or vibrate) if I go above a set HR, not 5 minutes later, that is robust and comfortable, and that doesn't need charging every 5 minutes. If it also does steps and sleep with a decent logging system/app then that's all to the good. But, given my not owning every single type of device out there I don;t know what will do the job, and the above mentioned sources, no help for my very basic but specific needs.

So, does that type of person still exist? And if so how do I find them?