Using Heart rate monitoring to help with pacing.

I'd like to find that person too. I keep reading stuff and changing my mind as to which item I might consider buying. I can do HR and oxygen thingy (blood O2 level?) using phone, but not easy and not ongoing - have to decide to do it. Hope you find some help @Wonko. Best of luck to you.

 

I too recommend the group "pacing with a heart rate monitor "@Daisy described. There is a lot of expertise in this group.

They do not urge increasing activity, rather the opposite, preferably keeping under .5-.6 of age related HR, so most people are trying hard to reduce activity. For me that is a hr of 75-90.

I have also seen recommended resting heart rate + 20%, or 10 % if resting hard which for me means about 71 if resting hard or 78 if allowing myself to go 20% above. Most people are shocked at how little they can do.

I too don't know how to adapt this @Luther Blissett if taking beta blockers so try to tend towards the lower number. It can seem impossible but over time my resting HR has lowered.

I also had some very helpful individual responses when I asked about personal experience of a stress echo which is my next step.

 

My experience was that many vocal members seemed to believe that they could use heart rate monitoring to increase their activity levels, and/or recover from or improve their ME/CFS. Is that no longer the case? If so, I would consider rejoining, but I simply could not and cannot handle a GET-lite club where new members are given the impression that any form of exercise (even with limits imposed by an HR monitor) can make them less ill.

The admin of the group did not seem willing or even interested in keeping it as a true pacing group when I was a member, hence my departure from the group.

 

If only it was that simple, I would have recovered the day after I got sick.

 

@Valentijn - site below is the one I have used although only dropping in now very occasionally. It tends to be quite techie using all the features of various monitors, graphs, plots etc. Alternatively it can be used just monitoring basic HR. There are people with a range of expertise who I have found very willing to share knowledge. Good set of files too.

https://www.facebook.com/groups/ME.CFS.HRM/

 

No, you are not really old. I can remember when you asked actual salespeople in actual stores about the the things you wanted to buy and I am not old at all.

You can do HR and blood O2 lever with a little device you put on the end of your finger. I do not understand why people think you should be able to do everything with your phone.

 

@Wonko you asked about HR monitors. I use a Mio alpha 2. It can be set up to beep when you go over your AT. I also have a Polar A360 which vibrates when I go over my AT. Both have reasonable battery life and don't need a chest strap. I find the Mio more comfortable even though it is a bit chunkier. YMMV. The Polar has recently released the A370, so the A360's can be picked up reasonably cheeply from eBay (I got one for £25)

Also popular on the FB group are the Fitbit Alta HR, the Fitbit Ionic and the Garmin Vivosmart. Amazon is a good place to browse for the reviews. HTH and let me know if you have any further queries.

 

Just for clarity, I do *not* think I should be able to do everything with my phone. Being able to do it on my phone is my first experience of measuring HR (other than timing pulse at wrist using a clock with a second hand) and blood O2 (other than when I nearly passed out at dentist and he used the thing on the end of my finger).

I'm looking for something that does it more automatically. I've heard people talking about things like FitBits that you wear on your wrist. But there seem to be differences between the various different electronic wrist things. Prob a waste of time anyway, since I've been bed bound since we came home from Christmas in Wales. But I just try and keep optimistic that I'll improve to at least being able to go downstairs and sit in our front porch for a chat with husband and to look at moon and stars if it isn't too cloudy which it mostly is.

Useful to have measures when I MUST go out too - dentist, GP, hospital etc.

 

@ladycatlover

Only you can say whether heart rate monitoring is for you while you are bedridden but you might find it useful to have a HR monitor to record your heart rate now. As you improve (which I very much hope you do and soon ) tracking that on a monitor might be useful. Just a thought.

 

That wasn't really aimed at you. More a general rant about the ubiquity of smart phones from someone who still uses a flip phone. {And if anyone is thinking "cranky old woman", you are wrong }

 

In my opinion the best balance between usability, price and function was the chest strap and watch option.

Most watches can be programmed to give out alerts for certain thresholds, and also function as a monitor screen, and as a watch.

• If you're not monitoring your heart, you still have a watch.
• You don't have to rely on extra devices to see what is happening.
• It is simpler technology.

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I get frustrated by products that assume you have a smart phone. (It's an external cost that is added to a product too.)

I must be a cranky old man, because I don't understand why people are happy with telling Mark Zuckerberg where they are, what they are doing, their daily patterns, who they live with, etc etc.

It's fascinating to observe the addictive nature of small glowing screens, and the behaviours that accompany them.

 

I am looking to get my first HR monitor, I liked the look of the Mio Fuse but am concerned about battery life. There is one question that I’m struggling to find the answer to – when do you have your monitor in ‘exercise’ mode? I’m understanding that needs to happen in order for it to notify me (by alarm/vibrate) so would I have it in that mode continuously? I know there are certain acitivities like showering, walking etc where I would benefit from an alert of some sort. Maybe whilst I’m resting I wouldn’t need it in exercise mode? Does any of this make sense?! Any advice gratefully received!

 

Thanks for the welcome @Trish, I have a three year old so an alert would be great as I’m constantly finding myself being far too active. Thought it might also be useful to help my daughter understand, if she hears an alert and knows that I need to stop. Probably hoping for too much, compliance and patience are not her fortes. I just can’t get my head round how often I’d need to charge the thing!

 

That's usually the case for ones with alarms. They usually have a setting for alarms and can be turned off when not needed.

I found the alarm function useful as it 'trained' me in activities that set it off. After a while, I was more aware and so didn't need to have it on so much.

I know not everyone is keen on chest straps, but as it trained me in a few weeks it didn't annoy me. The other advantage is having a battery for the monitor and a battery in the watch, which seems to prolong life.

This review gives 8 hours battery life in continuous use for the monitoring function. Doesn't seem much to me.

If you are having a problem finding battery life info for devices, try putting this into a search engine: "inbody:product name battery life" (Don't leave a space after the colon, and don't use the quote marks) It should bring up posts in which the battery life is mentioned.

 

Thanks @Luther, I opted for the Mio alpha 2 in the end, found a used one on eBay for £50.

Been using it for two days, certainly is an eye opener. I’m over my AT (111) LOTS by doing very little! But then again, I know I’m in PEM at the mo and as I understand it, overall higher HR is usual in PEM.

No chance of dealing with my ET (84) yet. Dare not set it to beep at me yet either, the thing would be going off all the time and I may well destroy it. One thing at a time I reckon.

 

For anyone interested in the Mio Alpha 2, they are currently selling at £47.69 here (shorter strap only):

https://www.tredz.co.uk/.Mio-Alpha-2-Heart-Rate-Monitor-Sports-Watch_76813.htm

 

I got a mio alpha as it provided the best match in terms of the function I needed. I simply couldn't get the bloomin' thing to sync with the smartphone app. I'm usually pretty good with gadgets.

I got my husband (aka the gadget king) to read the instructions and try it. No go.

Then we tried it with his newer smartphone.

Finally I rang the company's tech support. They suggested running the battery right down and trying it.

I wasted hours with it, got nowhere and sent it back. Shame.

I eventually ended up with a garmin vivosmart.

When taking the plunge I would recommend making sure that you can easily return it, even if the package has been opened, just in case you decide its not the right one for you.

 

This heart rate variability business is very interesting. Mine is all over the place.

It seems to shoot up really high, really quickly - like by 30 bpm in about 2 minutes.

 

Interestingly, a mum on one of the parents' forums asked the physio on the first visit if she could use a heart monitor for a week prior to looking at exercise programme. Her daughter is mild/ moderate, but had a horrible paralysis episode after HPV vaccination. This was provided. A week later physio was horrified and no version of GET, just small movements to try and retain muscle.