Using Heart rate monitoring to help with pacing.

Utsikt said:
Thank you for spelling that out for me - I needed it!
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I still may be incorrect on my interpretation, happy to get clarification. I'm also supplementing what has been said in other threads months ago at this point. The thread has certainly made a lot of twists and turns!
 
Kitty said:
Seems to be the case for people who're moderately ill at least.



Yep. In my case it's nearly always low blood pressure that's making my heart work harder.

Sometimes I've got both low blood pressure and a low heart rate. I felt like this a couple of weeks ago and the monitor showed 88/61 and a heart rate of 42 bpm, which explained why standing up was even harder than usual.

It's been happening periodically for decades. I can't see a link with anything in particular, so it's in my Just One Of Those Things tray. It always goes away on its own.
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At the moment I have something weird going on - I say at the moment because there are various things over the years (.severity of illness,medication, comorbidity) that could mean it’s new or it could just be because I never measured it much. My blood pressure has normally been on the low side going by hospital measures, gym (took it 3times in row) etc over the years but I seemed to remember back then it never was when I mentioned it at last GP.

This GP gets that and I’ve been having to have it taken more for certain meds. I’ve eventually started using my own at home properly because I wanted to check even though I could feel I was under strain having got to said appointment did whatever so wanted to check if it was white coat syndrome.

I also noticed that because I’m so ill and so rubbish at getting the thing on right that the first reading I take is around where it was at GP. Then if I recline a bit and rest as I keep clicking button to do it again then the second reading onwards is what I’d expect my normal slightly low blood pressure. Particularly the bottom one comes down by 40 (and top one 20) in the space of minutes of rest , slight recline and head support. It stays that way then if I put the chair upright (in fact top one comes down by 10 at first but as the next one it returned a bit I assume that’s just variation).

Anyway the bit that’s weird is the jump in my heart rate on the blood pressure machine. When my blood pressure is done at first and is high for me and I feel like I’m breathing a bit from exertion by heart rate is 45. A few minutes later after I’ve rested it then my blood pressure is my normal low-ish but my pulse rate is 87.

I guess it could that be that one feature, pulse rate is going up eg five mins after the activity that made by blood pressure rise but I’d expect the other way round. Basically atm my pulse rate increases a lot and my blood pressure comes down as my body rests from small exertion of getting to other room and getting cuff on etc.
 
I am currently mid Atlantic in howling wind but currently past the dank fog that required the use of the fog horn at 2 minute intervals throughout yesterday.
Does anyone else plan activities that they know will precipitate pem but do them regardless?

Well I am in that position lying on the bed where I had breakfast and lunch and have planned for dinner this evening here too. I am alarmed that the pem is severe and fearful of how it is going to develop.

Theoretically the journey here is manageable - taxi to the boat, go aboard in my wheelchair, rest in cabin as necessary, wheelchair if outside cabin, taxi from the boat taking 20-30 minutes to destination. It should be possible but I can predict that
pem will follow but I do it anyway.

I was about to argue that it is not steps that has precipitated the crash, checked my phone and found the day after boarding which was 2 days ago I did 3038 steps. This is mega for me. During all of 2024 my average steps were 586 per day. So something intervened and encouraged me to neglect observation of my usual patterns and has caused a huge crash. I think this may link to being human; some things are more important/ enticing than following a planned schedule. How much capacity I may lose in the longer term is what troubles me. But can I / do I want to give up something ( visiting our son) that is so important in being human ( a hypothesis) in order to prevent pem, and can I be sure it would work. I do believe that step counts are a relevant factor but there are others, emotion, stress, illness. We are human beings with other drivers for our behaviour.

So do others override their knowledge that pem will be the result if they do a particular activity? edit: If I'm not here for a few hours, I will be trying to sleep. Time changes most days here.
 
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Utsikt said:
If you block the signals to/from the brain, how can you know that the brain isn’t keeping track in some way just because you don’t get the same results?
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Because the whole system falls apart when the signals are blocked. If the brain was still making predictions in the absence of signals, it would try and compensate in some way, but it doesn't.

Jonathan Edwards said:
Yes there is. I go for a walk most days and when I get back I usually guesstimate how many steps I have done. I am usually reasonably accurate. However it does it, the brain keeps score. Events keep score of how far they have walked in any given direction.
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You know that is not what I mean. The brain is simply not counting how much kj is utlised or how much work is done by the muscles. There is no tallying on that level. The brain does not predict metabolic state based on muscle activity, it simply responds to the metabolic signals on an ongoing basis.
 
Snow Leopard said:
You know that is not what I mean. The brain is simply not counting how much kj is utlised or how much work is done by the muscles. There is no tallying on that level. The brain does not predict metabolic state based on muscle activity, it simply responds to the metabolic signals on an ongoing basis.
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But that isn't what I mean either @Snow Leopard. There is lots of tallying in terms of steps performed - as I say, even ants can tot up steps and multiple directions and walk back in the right direction. And I don't see that we are talking about predicting a metabolic state either. The brain judges whether or not the body has done more than is a good idea in terms of maybe repair processes. If there is prediction I suspect it has more to do with predicting pain than a metabolic state.

Maybe fatigue has to do with a cumulative shift in metabolic state during sport but even with Alcaraz and Sinner I suspect that their ultimate fatigue may have had more to do with signals of impending carpal tunnel compression and retromalleolar tenosynovitis. In the daily events that people with ME/CFS have trouble with I remain sceptical that metabolic signals have anything much to do with the 'fatigue' - and people even dispute that we are talking about fatigue. I asked for some data but haven't seen it yet!

In my own experience both fatigue and appetite are influenced by a whole range of contextual factors that cannot be signalling metabolically. Appetite is different in important respects but it illustrates how many overriding factors there can be - flavour, bulk, expected time to next meal, social factors. I don't see why monitoring of physical activity should not be just as complex. Metabolism is likely to be a major factor in sport but lots of other things affect my fatigue. If I travel much more than 100 miles my brain clock nearly always adds an hour to the time, irrespective of time zones. Not more than an hour though. I can ski a 22Km run from 3,500M above sea level at maximum safe speed and keep up with people forty years younger twice a year but just walking to the shops drains me at home. I don't see that as just responding to lactic acid or whatever.

And I don't think we can predict what will happen if the regulation of signals goes haywire - even if they originate from metabolic shifts. In disease the normal regulatory responses expected need not apply any more.
 
Jonathan Edwards said:
If there is prediction I suspect it has more to do with predicting pain than a metabolic state.
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I think that is wrong too (if you are talking about muscular pain itself), I get a similar amount of pain after 500 steps as 10,000 steps when walking. (due to ankle weakness, in turn due to motor unit loss, this is not necessarily a ME/CFS thing) the brain doesn't seem to notice or care how much steps.

We know what happens when we block the signals - the ventilatory responses are impaired and instead of central fatigue we get peripheral fatigue. You can do the effort to learn the science if you are skeptical.
 
Binkie4 said:
So do others override their knowledge that pem will be the result if they do a particular activity? edit: If I'm not here for a few hours, I will be trying to sleep. Time changes most days here.
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I think that’s quite normal, plenty of us will push ourselves past our limits for the sake of human experience. Social connection and enrichment are needs too.

I think it’s also very common not to be able to consciously gauge how much activity you’ve done when you’re pushing yourself for an emergency, something emotionally important to you, or just something that is more enriching/stimulating than running an errand.

When I was more moderate, my most intense PEM often came from days where I was able to see my friends—I was just enjoying it so much that I didn’t even register when I went past my limit. But like your experience here, the more objective measures proved more “accurate.”

I don’t think anyone’s arguing that we ought to always capitulate to our step counts or heart rate monitors—plenty of us talk about doing activities in spite of PEM just because we want to. They’re just useful tools if one still wants to be able to monitor activity but isn’t in a place to track it all mentally.

I hope your rest and recovery goes well!
 
I don't have all the knowledge the rest of you seem to be referencing. But, I think in some way our bodies must keep track. When we were normal our bodies became tired in relstion to a certain amount of activity. I don't think that has actually changed. I think our bodies still react to a certain amount of activity but the me/cfs has introduced different and shifting parameters and we don't fully understand what they are and why they are doing it.
 
I feel like it is possible that PEM that is actually fully seemingly out of nowhere (and for sure not triggered by emotional exertion or something similar), could be caused by something else like an unknown infection etc.
I do think it is a rare occurance for someone to have PEM that isn't triggered by exertion in some way. I personally never experienced it, although I am quite often in rolling PEM and most likely wouldn't even clearly notice it if something didn't have an explainable trigger. This is also I think what really makes a difference between me/cfs and other chronic illnesses. I often hear people with some other chronic illness be confused about "flare ups" that they cannot explain, while that has never really happened to me.
 
PrairieLights said:
I don't have all the knowledge the rest of you seem to be referencing. But, I think in some way our bodies must keep track. When we were normal our bodies became tired in relstion to a certain amount of activity. I don't think that has actually changed. I think our bodies still react to a certain amount of activity but the me/cfs has introduced different and shifting parameters and we don't fully understand what they are and why they are doing it.
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It's a wisdom that took a while to fully develop, probably over a year or two. It's both learning from trial and error (e.g. "being at the grocery store for X minutes only triggers PEM if I had already done another errand the day before"), and eventually learning to "tune in" to specific bodily signals during the activity that correlate quite well with whether I'm going to experience PEM later. It's a bit hard to describe the second part in words--It's like knowing that a torrential downpour is coming just from sensing slight changes in atmospheric pressure. In a similar way, I can sense that I'm approaching my "limit", and if I keep pushing myself beyond that point, PEM will follow.

Unfortunately that process had to be relearned all over again when my baseline severity changed. I think it is much easier to notice and keep track of the patterns if your overall illness is rather consistent for long periods of time--if you have fluctuations, or some additional comorbidity throwing a wrench into the mix, I'm sure that keeping track of patterns just becomes infeasible.
 
jnmaciuch said:
It's a wisdom that took a while to fully develop, probably over a year or two. It's both learning from trial and error (e.g. "being at the grocery store for X minutes only triggers PEM if I had already done another errand the day before"), and eventually learning to "tune in" to specific bodily signals during the activity that correlate quite well with whether I'm going to experience PEM later. It's a bit hard to describe the second part in words--It's like knowing that a torrential downpour is coming just from sensing slight changes in atmospheric pressure. In a similar way, I can sense that I'm approaching my "limit", and if I keep pushing myself beyond that point, PEM will follow.

Unfortunately that process had to be relearned all over again when my baseline severity changed. I think it is much easier to notice and keep track of the patterns if your overall illness is rather consistent for long periods of time--if you have fluctuations, or some additional comorbidity throwing a wrench into the mix, I'm sure that keeping track of patterns just becomes infeasible.
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I can relate to this but I think I am less tuned in. I can interpret my reactions to physical activities like walking, cleaning, and so on. But, I don't feel how mental or emotional stuff will affect PEM but I know that ot usually does.... but sometimes I get super upset and it doesn't and I don't know why not.
 
PrairieLights said:
I can relate to this but I think I am less tuned in. I can interpret my reactions to physical activities like walking, cleaning, and so on. But, I don't feel how mental or emotional stuff will affect PEM but I know that ot usually does.... but sometimes I get super upset and it doesn't and I don't know why not.
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It might just be a matter of learning over time, and the patterns are different for everyone!

In my case, I noticed that my mental/emotional state is more of a warning sign for underlying physical state rather than the thing that affects physical state. If I've been doing too much activity in the last few days or just was around enough total sensory stimulation (even if none of it was particularly emotionally stressful), then the smallest inconvenience will suddenly have me start sobbing. Which is how my close friends know that I desperately need to rest, since normally I'm the smooth sailing ship in the storm among them.

Now whenever I seem really emotional for no reason, I do a quick calculation of how much activity I've done vs. how much quiet rest time I got in the last few days, and 95% of the time it checks out.
 
I just came across Oonagh Cousins' post today in the #ThereforME campaign. It's brilliant and so relevant to what we're discussing. She describes how aggressive resting firstly improved her health so she could resume rowing training but then she had to pull back because it was too much which meant giving up the Olympics dream.

"Come the next Olympics, we will celebrate the medalists for their extraordinary performances. But let’s also create space to honour something much less visible, yet no less demanding, disciplined, or full of sacrifice: the work of rest for those with chronic illness."

'The work of rest' is so, so hard.

"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt. Amid all this, the emotional cost of rest is almost entirely overlooked. To rest in the context of chronic illness demands the endurance of immense grief."
 
Binkie4 said:
"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt. Amid all this, the emotional cost of rest is almost entirely overlooked. To rest in the context of chronic illness demands the endurance of immense grief."
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so so true. Do you have a link pls Binkie? No worries if not but I'd like to share that widely
 
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