Using Heart rate monitoring to help with pacing.

arewenearlythereyet said:
I use the coordination one too...when I start dropping things that's when it's time to sit/lie down
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The problem is that, for me, that's too late. And re the co-ordination/agility thing, it's always very poor in my case, it suddenly not being so poor is an indication I am improving, but it dropping, who notices "normal" ;)

The only semi-reliable indicator I have, other than partial cognitive shutdown, is sudden "fade", a pronounced temporary drop in strength which seems to precede PEM by several hours, usually occurring the day before. Paying attention to this seems to result in less severe and shorter duration.
 
Wonko said:
The problem is that, for me, that's too late. And re the co-ordination/agility thing, it's always very poor in my case, it suddenly not being so poor is an indication I am improving, but it dropping, who notices "normal" ;)
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That’s a tough one. I went thru a phase where I dropped an item on the floor about once a day. I could never seem to find my car keys, wallet, etc.
 
Really helpful to hear what monitors people use. Before I was ill I had one which was great, with a strap. I used that for sport. Don't have it now. I need one without a strap anyway I sometimes struggle with breathing so don't want something round my chest. Cost Cant be too high but maybe I'll get one for Christmas. Need something which is comfortable to sleep in too.
 
I use a garmin vivosmart 3 (iirc). I find it more or less ok, it's easy enough to check my heart rate, and I connect it to my phone for data over time. I wish I had had it years ago as it has been helpful, and I now have a better idea of how my subjective idea of how I'm doing tallies with more objective measurement.

It does tell me to 'move!', usually just after I've lain down which is just rude, and I don't know if I can turn that off. It highlights for me, as do other people's comments here, that we are using software that isn't designed for us, and that can be problematic.

ETA - after a little over a year of use (so out of warranty) the silicon strap has broken on my vivosmart 3. So far I've been unable to find a replacement strap for sale. Garmin will refit one themselves at a cost of £70/$89US. They're currently selling this model as a sale item for £69. I feel ripped off.

I think it's worth bearing this in mind about silicon straps and doing a little research about spares when considering what to buy.
 
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Workwell Foundation have published guidelines for pacing with a heart rate monitor, based on their research.

Workwell recommend that we don't cross our anaerobic threshold, because it will trigger PEM / PENE. (and Ron Davis suspects that PEM reinitiates the ME/cfs metabolic state).

if you haven't had CPET or similar testing to measure your anaerobic threshold (AT), you can use Workwell estimates of 50-60% of your age-predicted maximum heart rate (this is much lower than for healthy people). with severe ME, use the lowest %.

when we start physical activity, we use (a) stored ATP for the first ~30 seconds; then (b) glycolysis for up to 2 minutes (glycolysis creates a lot of lactate, AND is usually wonky in pwME); then (c) we *attempt* to use aerobic energy, but fail to do so. so our bodies revert back to glycolysis, until our lactate levels go nuclear-fission-ish and PEM-ish.

Workwell recommend that we do 'activity' in 30 second bursts, and never do 'activity' for more than 2 minutes (because of the problems with aerobic energy and glycolysis), and that we rest for 3 to 6 times longer than we are 'active'. this allows time for the body to reduce the lactate levels in the cells, etc.

and yes, it's ridiculously tricky, trying to find medications and other techniques to achieve our daily essential tasks, without crossing our anaerobic threshold, and without triggering the PEM response.

and for people with severe ME, a lot of caution is needed, because wiggling a toe might take them above their anaerobic threshold.

and there are other factors involved - cognitive exertion, emotional exertion, viruses etc.

it's not a perfect technique - but many people have found it useful, & have a better quality of life - because they have a more objective method to minimise PEM.

[there's lots of other information - eg our anaerobic threshold is not static, and is usually a lot lower when we're in PEM - and there are various techniques to help keep our heart rate lower - and monitoring our heart rate variability can be helpful in predicting patterns - this is just a short summary - apologies for any errors]
 
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Trish said:
Thanks, @pteropus that's really helpful. Workwell do seem to be the world leaders on this, with their work on the 2 day CPET (cardiopulmonary exercise test). I've read some of their stuff before and it makes a lot of sense.

Do you have links to the specific publications on heart rate monitoring?
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sorry, i don't have specific links. some of it will be here ->http://www.workwellfoundation.org/sample-page/
 
personally, i like pacing with a heart rate monitor, because it's objective. instead of pretending to myself that 'a few more minutes of this light activity shouldn't be a problem', i can look at my wrist-HRM, and know IMMEDIATELY that my heart rate is still nice and low, or is about to cross the anaerobic threshold and trigger PEM. i also track my resting heart rate - if that goes up, i need to rest more.

some HRM provide an audible or visible warning, when we're about to enter our 'danger zone'.
 
pteropus said:
i also track my resting heart rate - if that goes up, i need to rest more.
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Yes I find this helpful too.



It's a pity we don't all have the same devices. I'm wondering if it's possible design and carry out our own little study of some kind, or do a survey or something. I don't have any skills in this sort of area.

This is a neglected area, and I for one have never been advised to use a heartrate monitor by any of my doctors or other health professionals, despite it being mentioned in NICE guidelines. Despite it being of practical benefit and relatively cheap.
 
I have just brought the Fitbit Ionic. It was pricy but I have programmed an app for it that checks for heart rate zones based on the principles of pacing with a heart rate monitor - i.e., Resting, Active Recovery, Exertion, and Anaerobic Threshold. I am currently testing the app but hope to be able to publish it for others to use. It is a slow process as I only have a few moments of clarity to think straight enough to program.
 
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Wonko said:
I'm still trying to find a HRM that is acceptable in terms of price, battery life, comfort, features, and above all an alarm that tells me, then, not a few minutes later, when my HR has gone above the limit I set.

They don't seem at all designed for it, they seem to be designed to tell you when HR drops below a threshold, not when it goes above one.

:(
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If a heart rate monitor was to listen for the second when a it goes above a limit it could be going off every few seconds if your heart rate is close to the limit set. That is why they generally wait for the heart rate to be above or below the limit for a set time, i.e. one or two minutes. Otherwise it would be quite annoying.
 
I use heart rate in many ways. I have both a Polar A370 (fancy heart rate monitor) and an Oura ring.

At night, my Oura ring measures resting heart rate and average heart rate variability every 5 minutes. Together they give a pretty detailed picture of my level of restitution. During the day, my Polar watch measures my pulse every second and buzzes if I go over my AT. It also differentiates between different levels of activity and the time spent at each level (through the app), which is useful to help compare apples with apples:)

My AT at age 30 is approximately 114, which I think is pretty accurate. Above that and my heart rate seems to skyrocket in seconds.

My resting heart rate during the day is 43 when I'm well rested. It's partly genetic and has always been like that regardless of my fitness at the time.

I find I can tolerate going above my AT for a minute or two at a time, but not more than 30 minutes total during the day. Others have much more severe restrictions, it seems to be very individual.

My average HRV should ideally be between 70 and 80. Again this is highly individual. My range is 10 to about 140. An average above 80 is a warning sign I might have overdone it the day before and should rest to avoid crashing. An average below 70, and especially below 60, is a sign I'm not well rested and headed for disaster if I don't turn it around.

The HRV measurements also gives me a min and a max during the night. These can also be used. A minimum of less than 25 is a sign my SNS is over activated and is usually paired with a raised resting heart rate. A maximum of more than 110 is a sign my PSNS is over activated and that my body is working hard to prevent damage, a sign that I have overdone it before the consequences make themselves known.

All in all I find heart rate measurements of many kinds very helpful and informative.
 
pteropus said:
personally, i like pacing with a heart rate monitor, because it's objective. instead of pretending to myself that 'a few more minutes of this light activity shouldn't be a problem'
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When I first go my pulse oximeter, I was amazed and appalled at how high my heart rate went on just a short, moderate paced walk.
:nailbiting:
 
How do you adjust the formula if you take a beta blocker. I take 40 (mg?) a day. I took it originally for Essential Tremor but now for heart rate which is over 140. Still waiting for ECG (or is it EKG) results.
 
Another question. How on earth are we suppose to stay fit if we have to remain in our AT? Are we suppose to do imaginary weight lifting?
 
Staying fit is not an option when unwell @PandaEyes

However once some improvement comes it is easy to regain some fitness - well up to the new ceiling imposed by whatever improved level you find yourself at.

I have written a few blogs on pacing... check out the link in my signature line to my blog index, where some of the pacing blogs are grouped.
http://sallyjustme.blogspot.co.uk/2014/08/index.html

I still wear a HR monitor even though I'm currently faring better than before.
 
I agree with @Keela Too. I made the mistake for many years of pushing beyond my energy envelope and as a result I stayed fairly fit, but my energy envelope kept shrinking. In other words, the more I pushed myself into PEM, the less it took send me into PEM the next time. So in the end, by trying to keep up any level of fitness, I made myself sicker.

I understand the principle of staying inside the energy envelope, however small it is, the better the chance of that envelope gradually getting bigger as the body has few crashes and a better chance to heal a bit. If it's health first, or fitness first, I'd rather have health.
 
PandaEyes said:
Another question. How on earth are we suppose to stay fit if we have to remain in our AT? Are we suppose to do imaginary weight lifting?
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Good question! @Keela Too and @Trish are right. Staying safely within the energy envelope is important for our ongoing health. I wish I had known this a lot earlier in my illness. I have found Keela Too's blog very helpful.

You could consider stretching exercises or something like yoga. These can be adapted to be done lying down. Whatever you do has to remain, alongside all the other activity you do to live, within your energy envelope. It very much depends on your level of health and the demands on you, and is an individual thing.

PandaEyes said:
How do you adjust the formula if you take a beta blocker. I take 40 (mg?) a day. I took it originally for Essential Tremor but now for heart rate which is over 140. Still waiting for ECG (or is it EKG) results.
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As you still have results and discussion with your medical practitioner to come your medication may be altered, and you may be given new advice. Your heart rate may be better managed in future, but at present it's high. I don't know what to suggest in terms of the formula, it may be something to aim towards rather than being achievable given your current heart rate.

If I were in your situation, I would want to monitor what my heart is doing with the activity I do at present, and then see where I can lower it - eg resting on stairs, walking slowly, sitting instead of standing, lying instead of sitting etc.

I would monitor any changes I can make, because that would be useful information and might help me lower my heart rate during activity as much as I can at the moment.

That's my personal take, not medical advice which I'm far from qualified to give.

In my experience living with heart rate monitoring isn't an exact science because life is messy and awkward. It also takes a bit of time to get used to and adapt to. It is worth it though.

If I'm not helpful feel free to ignore me :)
 
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Skycloud said:
Good question! @Keela Too and @Trish are right. Staying safely within the energy envelope is important for our ongoing health. I wish I had known this a lot earlier in my illness. I have found Keela Too's blog very helpful.
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:)

Skycloud said:
In my experience living with heart rate monitoring isn't an exact science because life is messy and awkward. It also takes a bit of time to get used to and adapt to. It is worth it though.
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This! Exactly this! :)
 
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