PEM without heart rate change?

I'm new to an ME diagnosis (got it Dec 27, 2022, although I'd had ME symptoms since 1994 if not before) but not new to cardiac issues. I've had lots of testing as a result of chest pain while exercising (nothing wrong with my heart; in retrospect an ME symptom related to pushing myself too hard) and arrhythmia (diagnosed wrongly with a-fib in 2005; cardiologist in 2021 corrected that to atrial tachycardia) that worsens when I exert myself and am probably in PEM. (Still trying to figure out what's PEM for me and what's baseline--another issue.) What I don't have, and what I see described by many people as being a hallmark of PEM, is a change in heart rate (brachycardia or tachycardia) or HrV (which I still don't completely understand).

Can one be in PEM without a change (slowing or quickening) of heart rate?

 

Atrial tachycardia is a supraventricular tachycardia and is explained here

https://www.mayoclinic.org/diseases-conditions/atrial-tachycardia/cdc-20355258

In very simple terms (from a retired medic): The atrium fires off it’s own rhythm (that’s the supra part, above the ventricle), and so we diagnose on the rate (as per Atrial fibrillation), The arrhythmia is the atrium going haywire and suddenly the heart rate can shoot up quickly from normal (say 60-70) to tachycardia (100)and above to 180 (not good, lots of symptoms). In the emergency dept we usually use carotid artery massage (via the vagus) to bring it down while we do investigations eg - ECG bloods etc. You would have had this done and investigated by the cardiologist etc.

So the heart is controlled by the sympathetic nervous system firing it up to prepare for action, and the parasympathetic nervous system fires off to bring abnormal heart rates back to resting and homeostasis (unique to the person).

A rough guide to your resting heart rate/and HRV, is first thing in the morning after an overnight sleep when cortisol levels are starting to rise quickly and triggers waking, starts around 4 am for “normal” people, (of course we have unusual sleep, circadian rhythms and cortisol levels - never really understood….) and so this rise prepares your physiology to function for the day ahead.

You would need to learn to record your resting heart rate via palpating your pulse at wrist or neck and counting the beats for a minute, or use a smart watch, or a BP monitor or a pulse oximeter (all of them measure heart rate).

It does take a while to work out what is your “normal for you” resting heart rate, perhaps do it for two weeks and if you do have a good sleep cycle…but if you record a rough estimate of sleep hours a pattern will emerge. It may also be useful to record events of the day that may increase heart rate like going upstairs, walking faster, activities that make you breathless (likely PEM) and stressful events or emotions that do increase heart rate but once abate, your heart rate should go down, sometimes not back to normal, but with sleep hopefully.

HRV is also a pattern but is more affected by the normal fluctuations of cortisol levels during the day so big rise in morning, peaking midday dipping a bit in afternoon then rising a bit to a lesser peak and then falling off for bedtime. (ME can change all of that but it will depend on your particular experience/physiology and severity of illness)

If you use a smart watch app like WatchME, you can set limits and get warnings and see what various activities increase your HR (and likely Post exertional symptom exacerbation (PESE) or PEM (depends on your lived experience, ME status, whether you have a tiny window of improvement in symptoms whilst in PEM and can identify aggravating factors).

Look for changes in heart rate, especially standing (orthostatic stress) but also when you do relaxing and pleasurable activities, or deep abdominal breathing, mindfulness techniques, breathwork etc, (and meditation which needs a quiet space to learn it so you get the result - over time.) as well as all the visualisation stuff, or what ever people find useful eg: listening to music, doing repetitive craft movements etc.

You can also use the Welltory app but need to read all the information they provide for “normal” people. There are also Facebook groups, specifically for ME using HR and HRV for pacing with a variety of apps and heart rate recording devices.

I do think PEM is shown in heart rate changes, as that is what I experience, my baseline ( housebound severity) but with orthostatic symptoms but controlling PEM, my resting heart rate is about 65 and can keep within the recommended 15 beats more (Workwell Foundation guidelines - if my recollection is right) so 80 pacing through day but if something stressful happens goes up to say 90 plus but settles back. My HRV is on average around 30 but fluctuates between 11 (full PESE and PEM) but the odd ones above that up to 50 if doing lots of stop, sit, slow down, rest, deep breathing if PESE starts.

edited for accuracy

 

The only relationship I've managed to uncover between PEM and active heart rate shows up when I'm in the "PEM gap". This is where I've incurred some significant PEM but it isn't yet obvious, meaning I can make the mistake of doing activity I'm not really fit for.

My heart rate doesn't increase to the level I usually see during the activity. Rather than spiking too high, mine seems to be suppressed. I've noticed this through swimming, which I can do up to twice a week at times.

Normally my heart rate after warm-up runs consistently in the mid-to-high 130s, but if I make the mistake of swimming when I've incurred PEM, the average will be noticeably slower even though my pace is the same. I've even noticed that pace sometimes appears to be improved during this phase, so that I'm swimming a bit faster than usual but with a slower heart rate. Hard to be sure about this due to lack of data, though, as I mostly manage to avoid swimming on the wrong day!

I am pretty sure that if my average heart rate goes a bit higher than normal, perhaps because the pool is quiet and I don't have to moderate my pace, it doesn't automatically result in more PEM. The problem for me seems to be working when my heart rate is suppressed, not working at times when it will increase normally.

 

I think it is a much more complicated issue than simply HR going up with PEM.

There are different levels of organisation in the body - how biochemistry makes the cell function, how cells join together to make an organ function then how organs coordinate to make the body function. I have tried to get my head round how these levels interact for fifty years! It is a part of biology that has not been properly researched.

The relevance to ME is that the HR goes up as a whole body response with the heart interacting with muscles, blood, hormones, brain and so on but the broken energy system is at the level of the cell's biochemistry.

If we do too much the body is overwhelmed by how much has gone wrong in so many cells so it we get high HR and all the other things but if we have just used up all the energy in one small part of the body only that part will have "PEM". When I was at school and tried writing my fingers would go funny and I had excruciating pain in my wrist but not general fatigue.

Nowadays, I love to do crafting, usually 5 minutes then lay down for an hour for the afternoon. If I don't want to stop I am forced to because I begin to tremble and can't use tools. At that point my heart rate is still low, less than if if I have a shower, say, probably because I am sitting down and find the process relaxing.

There is a lot still to find out about ME. We have researchers and medics who know a lot about it now but they make broad pronouncements that don't exactly match lived experience. Inevitable, really and not that much of a problem as it is just a start but new patients may think they are the finished description when they are a tentative first step.

Also, PEM is not a discrete symptom but a collection of them which we learn to recognise as common to when we have exerted too much.

Also, others have noted and I have found to be true, when we are in a crash our heart rates go down not up. When my HR goes down below a certain point I know I am in real trouble and need to be horizontal.

 

That's one theory, but not one that I support. I don't believe that mitochondrial dysfunction is a core part of ME. ME might make me feel really lousy, but my physical ability remains unchanged, so my mitochondria seem unaffected. I believe that ME's core dysfunction involves brain cells, most likely glial. Which brain cells are affected to what degree determines what our downstream symptoms are. Some of the results of neural dysfunction might be reduced mitochondrial function, or it might be reduced blood flow to some parts, which results in less available energy, or it might simply be neurological, with brain cells giving the signal of "low energy" without an actual physical reduction in energy (that's not a psychological dysfunction, but physical one).

 

I've never had HR issues, PEM related or otherwise. Age is messing things up but I had ME/CFS for at least two decades and maintained a good HR response to activity/rest patterns and no obvious variations in PEM versus non PEM.

 

I have only started pacing with a HR/HRV monitor for the last 6 months to a year as I decided to reconnect with the finer points of ME science (outside my clinical knowledge) and the ME community, and what has changed since I got ME 30 years ago and didn’t have all the education many have had from their country of origin on pacing etc, just did it intuitively over time and a bit of reading and got by from mild- mod and now to severe. I do find the visual reference very good and informative to prompt me to stay on track with the Pace and not do my normal “get involved in something” and forget to pace. (likely a cognitive effect and personal to me). Sometimes we have no choice but to induce PEM and have to deal with payback due to responsibilities within our home environment etc.

There are medics in this forum who have specialised clinical, technical and lived experience in HR/HRV pacing and they may be able to contribute, on this thread, if available.

A lot of HR/HRV is unique to the person, their illness and severity, existing medical conditions, fitness (if they can still do sport/exercise) and the state of their cardiovascular and possibly their neurological and brain health too (that is more speculative as we know so little). As one ages, everything in the CV and neurological system starts to age and lessen in function.

So people need to take that into consideration as well as the specific problems for pwME- orthostatic stress and intolerance.

Also some people with hormonal eg thyroid may have problems controlling heart rate due to their illness etc and the medications they take to relieve symptoms.

Edited for accuracy

 

My heartrate has never been affected by PEM.

 

Thank you for this very thorough and helpful reply, Hibiscuswahine. From what you and @Trish say, I definitely will start keeping track of my HR nd HRV. Other than the episodes of atrial tachycardia or simple skipped beats, I generally haven't paid attention to my heart rate. And I also nearly always put myself into PEM each day, judging by other symptoms. This could really help me learn to pace better. Thanks again!

 

I find my HR does tend to relate to my "status" in terms of the ups-and-downs of symptoms. Whether that relates to PEM - in terms of it being post-exertional - I don't know. Probably. I'm interested to note @TigerLilea does not vary HR with PEM.

In my current mental model of the disease I think of the cardiovascular symptoms as a downstream effect, but that they don't have a 1:1 relationship with other symptoms. OI I think is down to endothelial dysfunction, and tachycardia is a response to challenge, along with the reduced HRV that presumably reflects sympathetic upregulation. But tachycardia may be a lesser or even absent feature for some people's compensation (or they have much less endothelial dysfunction).

Also for me, symptoms seem to not rise and fall together. Eg I can have days of fatigue but decent HR, or less fatigue but bad headache, or higher HR but otherwise relatively OK. I think the variation in the underlying metabolic abnormalities (declaring as fatigue) need not be in lock-step with these other symptoms and if they do occur there may be a variable delay.

It's complicated though because fatigue that's primarily a result of a particular organ's abnormal cellular processes (say busted mitochondria) will be augmented by abnormal blood flow to that organ.

 

Yes, probably. There is also specific comorbidities like POTS annd LC to consider and people with diagnosable Orthostatic Hypotension etc etc.

Experiences of HR changes in PEM would have to be qualified with specific data of measuring heart rate to be of use if one is considering using HR/HRV monitoring of pacing, in my opinion.

We are still some time out getting a full picture of the pathophysiology of ME, (endothelial, vascular, neurological eg. glial, immune and auto-immune factors, cell membrane transporters, mitochondrial function, viral and infection effects - well basically the usual list as long as one’s arm….)

Also determinants of PEM, which is now being actively researched (and definitely looking hopeful as the UK realigns research away from BPS to biomedical science) by Dr Todd Davenport for the Workwell Foundation which is where I got a lot of my information from.

 

Thanks, everyone. This is all very helpful. I have two more questions--sort of a follow-up to everyone's contributions but especially to @hibiscuswahine 's initial response.

Questions: has anyone else experienced arrhythmia as part of PEM or ME symptoms more generally? And for those of you with medical expertise, should I be pursuing possible treatment for the AT with my cardiologist, even though she said she wouldn't be concerned unless my episodes were lasting 30 seconds or longer (which she said would suggest a-fib)?

I read a bit on atrial tachycardia to understand it better, and from what I read on the Cleveland Clinic's site, it seems this is normally a short-lived condition but, if longer term, can be damaging (i.e., cardiomyopathy). I've had this since I first pushed myself beyond my energy limits (but not sure if I had ME then or it was just past my juv RA limits) when I was 18. I'm now 54 and still having episodes, and they almost always happen when I over-exert--i.e., am in PEM. Today, for instance, I stupidly ran three errands in the morning even though I awoke exhausted (yeah, too "good" at pushing my body when I'm not in a place to be doing much of anything). By tonight, am crashing, and while lying down watching TV, I had atrial tachycardia episodes (lasting about 10-12 seconds each) for about a half hour before my body/heart finally calmed down.

I freak out about heart issues and don't want to let something potentially life-threatening go untreated. Thanks!

Edited to add: thanks @shak8 --I will contact my cardiologist after I'm somewhat recovered from surgery next week. I was just curious if anyone here had experience or knowledge of a link between atria tachycardia and ME, since my cardiologist as of now knows nothing about ME. (At our last appointment, even knowing my struggles with fatigue--though before I had an ME Dx--she was encouraging me to get at least 150 mn of moderate [i.e., brisk walking, for ex.] exercise per week.)

 

Thanks, Trish. Does the Visible app work with your Fitbit? I'm trying to figure out what's the least expensive but still accurate and helpful technology to get to help me keep track of this. I've found that trying to just take my pulse when I awake first thing isn't very accurate, because my alarm literally alarms me awake (usually out of a deep and disturbing dream), so that alone elevates my HR, probably, from rest.

Any others who have technology recommendations--I'd be grateful for yours, too. Thank you!

 

Very interesting that some people will experience tachycardia and others brachycardia in relation to PEM. Definitely don't understand why that would be--or why, for me (at least with the little data I have so far), PEM seems to go hand-in-hand with arrhythmia.

 

Interesting, Creekside. The "quick-and-dirty" explanation for ME (with their caveat that it's still a very poorly understood illness or constellation of illnesses) that the Stanford folks gave me was that ME was due to BOTH mitochondrial dysfunction and neural inflammation in the brain. They didn't go into any more depth than that, partly because we'd run out of time.

 

This is making me think about how I would take my pulse during or right after exertion back when I could push (and was pushing) myself to do vigorous physical exercise (at least 80 mn of water running in the deep end of the pool, or riding fast on a stationary bike) because I had read that one "should" get one's heart-rate up to the target point for one's age group. No matter how hard I worked, my pulse never got above about 90 beats/mn, and my resting is about 75-80.

 

Yes, I have had about 30 years with this (29 to be exact), but I didn't even try to do pacing intuitively--thought I needed to keep pushing myself because exercise was good for my RA, and intellectual activity was necessary for my degree program and later, my brain function more generally. So I am impressed that you tried pacing on your own, though sorry things still got worse. What you said about aging and other comorbidities makes sense--I think one always needs to look holistically at the body and weigh all factors that can affect functioning, and I have many of them (including having spent the past 29 years doing nothing other than attempted afternoon naps).

Curious: what HR/HRV monitor did you get?

 

This makes a lot of sense, @SNT Gatchaman . Thank you.

 

Hi @SunnyK
I hope something here is of help to you.

I have worn a FitBit Charge 4 (recommended to me by a friend in the local support group) since March 2021. I use the free FB app together with a free app called Cardiogram which has an area for notes, so I can record what I am doing during any high readings.

My FB displays HR if I scroll through my watch. So if I have palpitations when sitting on sofa with my legs up, I can easily see what my HR is.

I also use the Visible app but all my recordings are taken by my mobile

My problem (under new investigation at POTS clinic) is that I suffer with very high heart rate on exertion, rather than syncope - which would be more classic POTS. I have suffered with Orthostatic Intolerance & dysautonomia for more than 6 years and was referred for a Tilt Table Test in 2017. Following a shortened TTT, I was just discharged by the consultant. Since then I have continued to suffer PEM/worsened symptoms, especially on standing.

After requesting another referral, I am now due to have a HR monitor attached for a 7 day reading. But I waited 7 months for my 1st appointment at POtS clinic (NHS), so I am not expecting my referral to Cardiology to arrive any time soon.