M.E. As a runner & HR findings.

[feeb]

I haven't, no. HRV wasn't very easy to measure with consumer products at the time I was training. Now the consumer products are there, but my ability to train isn't!

It'd still be interesting to look at my HRV at rest though, now that it's easier to do that, so thanks for the reminder. Must see if I can find my chest strap.

 

[junkcrap50]

I haven't, no. HRV wasn't very easy to measure with consumer products at the time I was training. Now the consumer products are there, but my ability to train isn't!

It'd still be interesting to look at my HRV at rest though, now that it's easier to do that, so thanks for the reminder. Must see if I can find my chest strap.

If you have your old HR data, you might be able to feed that data into HRV apps to analyze your prior HRV. I don't know how exactly though.

 

[philw44]

Hi @philw44,


Your sleep patterns are also virtually identical to mine - a nice, flat line on good days, and a spiky nightmare with significantly higher bpm on bad days.

hi @feeb ... its nice not to be alone! Really sorry about your situation too, I hope you can still pursue your cycling.

@philw44 and @feeb have either of you tracked your HRV with your training?

I'd never heard of it until you mentioned it. I've actually just seen that the new Garmin watches can measure HRV and also have a pulse oximeter. Just need some £££ ha!

 

[junkcrap50]

I've actually just seen that the new Garmin watches can measure HRV and also have a pulse oximeter. Just need some £££ ha!

Yes, they can. But there are a lot of iPhone apps that can analyze your heart rate data and use that to measure/calculate your HRV.

 

[adambeyoncelowe]

Thanks Ryan, i'll look more into it.

I could get a CPET test, at least if nothing abnormal was found i'd get my V02 max and lactate threshold measurements! Do you know a place in London that would do this test?

I do have a chest strap HR monitor, but wouldn't be sure exactly what i'm looking for!

Hi Phil,

There's a list of UK places that do the testing here: https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/ (if you can run 5K, it might be easy for you).

There's also info about the protocol in that thread too. It seems like it's pretty decisive in testing for PEM, rather than other types of exertion intolerance (MS patients, for instance, report exertion intolerance but then don't get the drop in function on the second day that ME patients do). It will also show you if the drop is in VO2max, maximum heart rate, workload, etc. That might be a clue.

ETA: It's still an experimental test, though, and it's certainly not required--but it sounds like it's something you're doing for peace of mind more than anything else.

I suppose it's possible that if you're in recovery you won't get the clear drop in function on the second day, but it might still be worth a shot to put your mind at ease. Sometimes, when you get diagnosed with ME, doctors attribute everything to this, which is unhelpful if there's something very treatable happening in addition to the ME.

The heart pain and dyspnea might be clues--my heart hurts when I have an asthma attack, for example (and I can feel it palpitating). My asthma also gets worse when I pick up a virus, which can last for a while.

You've probably been tested for asthma already, and I know you've had an ECG, but the breathing + heart thing for me = something cardiovascular (though ME can affect cardiovascular health). So, as I say, it may be a clue.

POTS is the other thing to consider, as Ryan says, especially because, anecdotally, exercise may help POTS in some cases. The NASA lean test done over a long period of time (10 minutes+) can sometimes work and can be done at home or in your GP's surgery. But if it's a more complex type of dysautonomia, then it may require more complex testing. Dysautonomia is common in ME, so it doesn't necessarily mean it would replace that diagnosis, but may overlap. Especially if the two-day CPET is positive.

Good luck!

 

[adambeyoncelowe]

Hi Phil,

There's a list of UK places that do the testing here: https://www.s4me.info/threads/uk-locations-that-offer-cpet-vo2max-testing.4999/

There's also info about the protocol in that thread too. It's pretty decisive in testing for PEM, rather than other types of exertion intolerance (MS patients, for instance, report exertion intolerance but then don't get the drop in function on the second day that ME patients do). It will also show you if the drop is in VO2max, maximum heartrate, workload, etc. That might be a clue.

I suppose it's possible that if you're in recovery you won't get the clear drop in function on the second day, but it might still be worth a shot to put your mind at ease. Sometimes, when you get diagnosed with ME, doctors attribute everything to this, which is unhelpful if there's something very treatable happening in addition to the ME.

The heart pain and dyspnea might be clues--my heart hurts when I have an asthma attack, for example (and I can feel it palpitating). My asthma also gets worse when I pick up a virus, which can last for a while.

You've probably been tested for asthma already, and I know you've had an ECG, but the breathing + heart thing for me = something cardiovascular (though ME can affect cardiovascular health). So, as I say, it may be a clue.

POTS is the other thing to consider, as Ryan says, especially because, anecdotally, exercise may help POTS in some cases. The NASA lean test done over a long period of time (10 minutes+) can sometimes work and can be done at home or in your GP's surgery. But if it's a more complex type of dysautonomia, then it may require more complex testing. Dysautonomia is common in ME, so it doesn't necessarily mean it would replace that diagnosis, but may overlap. Especially if the two-day CPET is positive.

Good luck!

I've also just remembered that some older studies suggested a small heart was common in ME. Could this be the cause of the heart pain?

 

[feeb]

I guess the frustration for me at the moment is that people see me with this high level of fitness (higher than many without M.E.) and can't understand how there is a problem.

Come to think, that was also a huge problem for me. Try convincing a GP that "my resting heart rate has increased to 70bpm" isn't normal and they laugh you out of the surgery. Matters not that your normal resting HR was in the low 40s just 3 months previously, so you've seen a 30bpm average increase practically overnight. The normal range is a variance of about 12bpm! How sick do I need to get before you'll take me seriously?

I also failed to get across the level of my decline; I used to cycle 200 miles a week, do an hour of circuit training every day, and ran 5k 3 times a week. When things started going wrong I had to give all that up, but I also had to start working from home because commuting on the train twice a day was too much for me. I had to start getting groceries delivered to my house because I couldn't carry out the task of shopping myself. For some reason I couldn't get my GP to see the difference as abnormal in any way. "Just stress", apparently, before ending up with "just CFS" diagnosis. It's ridiculous, really.

FWIW I'm going to be using this free app to measure HRV: https://elitehrv.com/ - I haven't tried it yet but it works over ANT+. Just need a new battery for my chest strap first as the poor thing is very dead now.

 

[Binkie4]

@feeb

Just to let you know that there is a fb group “ Pacing with a hr monitor” that is very helpful. The files are useful, there are some very Knowledgeable members, many check HRV etc and understand the science. I found it very helpful before I deteriorated ( and had a heart condition diagnosed) and I found it useful when I was doing stress exercise testing for my heart, wishing to keep it in a safe place for ME.

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

I wish I could be safely tested for POTS. The cardiologist who tested me ( despite being on the POTS website) did not do an accurate test, and my OI is now so bad that I wonder if POTS would be a more accurate diagnosis than ME, or alongside ME.

@Ryan31337 - I seem to remember from a while back you investigating autonomic dysfunction very thoroughly. It has all got very complicated because I now have a heart valve condition, am very satisfied with my new hospital but wonder where would be the best place to go in London for thorough POTS testing. Would you mind sending me a pm?

Eta: I did choose someone from the pots site but it was not a success; understatement.

 

[MerryB]

Hi, I know this post is from a while ago but just wanted to say that I notice similar patterns in my HR, although I am much less active than you.

I have pretty much no exercise tolerance, so something like going up the stairs too many times in one day, doing a little housework, etc. will trigger a PEM day for me.

On non-PEM days my HR is better controlled - not do many spikes and troughs, and doesn't drop lower than about 50bpm at night.

When I am in PEM, my HR is super spiky - any tiny move will send it shooting up. And it will
also drop very low randomly as well, after it spikes, lie beating fast tired out the muscle or something.

Especially in my sleep it will do this more. E.g. if I wake up to go pee, when I get up it will shoot from 50bpm to 120, then when I lie down and go back to sleep it will drop very quickly down to e.g. 30-40bpm, then slowly rise back up to 50bpm.

 

[Snow Leopard]

When I am in PEM, my HR is super spiky - any tiny move will send it shooting up. And it will
also drop very low randomly as well, after it spikes, lie beating fast tired out the muscle or something.

Especially in my sleep it will do this more. E.g. if I wake up to go pee, when I get up it will shoot from 50bpm to 120, then when I lie down and go back to sleep it will drop very quickly down to e.g. 30-40bpm, then slowly rise back up to 50bpm.

This is not typical of ME, and your HR should not be dropping to 30-40 bpm, which suggests some sort of heart or breathing issue. Someone who is quite deconditioned may have spikes to 120 upon standing however. The key is that the heart rate response lags behind energy demands and normally ramps up due to autonomic nervous system regulation.

Several friends/relatives have heart condtions, one had heart rate that dropped dangerously low and stayed low even when exercising (now has a pacemaker), the other has postural tachycardia, leading to very high heart rates, eg 190 while jogging slowly, 150+ upon standing and has some symptom overlap with ME, but can exercise lightly without major PEM.