Feedback please on HR data

[AndyPR]

OK, so I'm doing the thing that you really shouldn't on the internet, asking a bunch of strangers for medical advice, but I'm feeling that all the feedback from the 'experts' (GP and cardiologist) that I'm getting is being totally dismissive of what the data seems to be telling me.

Here is an example of the data that my Fitbit gives me on my heart rate, it is pretty typical data for me;

Each data point is the averaged rate for 5 mins, heart rate zones are determined using the standard 220-age calculation.

My activity shown above was to get up, eat breakfast, remain seated until lunch, go to my appointment after lunch, then visit two shops while we were out, then once we were back home I was either led on my bed recovering, sat at my desk or sat on the sofa until I went to bed. While I understand the heart is going to react to changes in activity, I feel that the reaction is extreme whereas the experts I've seen so far don't - problem is I have no faith in them.

BIt of background on me. Male, 44, live in the UK, officially diagnosed CFS 10 years ago but I suspect I've had this from childhood, was still able to just about work full time up to 8 years ago, went part time to try to cope better but had to give that up 4 years ago and haven't worked since. Was doing daily exercise for 13 months up until December last year, with hindsight this wasn't sensible of me but it was my last attempt at getting better that way, although, in my opinion, it limits the effect deconditioning should have on my HR results.

So I guess I'm looking for opinions on whether I'm being reasonable in being concerned with what is shown or not. I appreciate that there won't be a lot that can be done anyway but it's nice to get confirmation of anything with this disease. I also understand that the Fitbit won't be 100% accurate but it lines up pretty closely with a Polar HR monitor with chest strap that I have. I just don't think that what is being shown is normal, which is what I'm being told.

 

[halcyon]

I have similar results from my fitbit and I feel like it's excessive as well. There are some days when it shows me in fat burn zone for 8 or 9 hours a day. I'm 100% sedentary and laying down the large majority of the day (though I do have POTS). I'm curious what a healthy persons looks like under similar conditions.

 

[halcyon]

I'm pretty sure the fitbit underestimates heart rate as well. It's quite sluggish to respond to large spikes in heart rate I've noticed when comparing it against a pulse oximeter.

 

[Jenny TipsforME]

@AndyPR I'm guessing you've looked up POTS?

If not try a Poor Man's Tilt Table:

Lie down for a bit and check your heart rate
Stand up and check again (could take up to 10mins to notice if well enough to stand that long)

If BPM increases more than 30 or is 120 or more just standing it indicates POTS (and you should have more formal tests to check)

POTS overlaps a lot of ME symptoms but around 1/3 pwme have both. Not many doctors know that though!

There are off label meds for POTS that really do help, although there isn't a cure it is better treatment wise than ME.

 

[AndyPR]

@AndyPR I'm guessing you've looked up POTS?

If not try a Poor Man's Tilt Table:

Thanks for the replies.

I'm pretty convinced that I have POTS and I have raised the subject with both my GP and the cardiologist that I saw but very much got the impression that they weren't interested in what I had to say - hand waving and talking about how the heart responds to any change and I'm in the 'normal' range, so frustrating, especially when brain fog hinders my ability to argue my point.

 

[Jenny TipsforME]

I recorded the Poor Man's Tilt Table results a few times and records of BPM doing ordinary tasks eg brushing teeth 145bpm etc. Showed it to GP and cardiologist.

My heart rate clearly wasn't normal though so that probably helped. Eg when I saw the cardiologist 120bpm sitting and 150bpm standing so the tilt table was a bit of a formality. If yours is sometimes normal that's trickier.

There are some things you can do at home things I've tried are:
Graduated compression long socks/leggings/tights
Extra salt (i don't have high BP), salty snacks, electrolyte drinks
Drink more but this needs to be balanced by salt
Less carbs especially refined
Licorice to boost blood volume (not too much or low potassium)
Avoiding things that are vasodilators
Experiment, does caffeine make you better or worse? Mixed for me

 

[taniaaust1]

Thanks for the replies.

I'm pretty convinced that I have POTS and I have raised the subject with both my GP and the cardiologist that I saw but very much got the impression that they weren't interested in what I had to say - hand waving and talking about how the heart responds to any change and I'm in the 'normal' range, so frustrating, especially when brain fog hinders my ability to argue my point.

how do they even know that you are in the normal range if they havent tested you at all for POTS......

that high spike into cardio zone around 9am, I suppose that was when you were getting your breakfast. As other said it could be POTS which settled down again when you then resat.

 

[Mary]

@AndyPR - I've found that when my potassium gets low, my HR goes up. Like you, just standing to brush my teeth or something and it would be over 100.

I generally take 700 - 800 mg. potassium gluconate (in divided doses) a day, plus drink 1 or 2 glasses of low-sodium V8 (900 mg. potassium chloride in 8 oz. glass), and this helps quite a bit. On blood work my potassium is always in the normal range, but on the low side of normal.

 

[Keela Too]

Some of my HR data was shared in this post from last year:

http://sallyjustme.blogspot.co.uk/2015/11/HRmonitoring-NICE.html

Also some info on NICE guidelines and HR monitoring etc.

 

[Little Bluestem]

heart rate zones are determined using the standard 220-age calculation.

Which are probably meaningless for you. Can you get an anaerobic threshold test done?

I'm pretty sure the fitbit underestimates heart rate as well. It's quite sluggish to respond to large spikes in heart rate I've noticed when comparing it against a pulse oximeter.

Wouldn't the 5 minute averages 'even out' any spikes?

 

[AndyPR]

Thanks for all the tips guys, especially the link to your blog @Keela Too

Which are probably meaningless for you. Can you get an anaerobic threshold test done?

Wouldn't the 5 minute averages 'even out' any spikes?

Just looked the that test up and it seems to need about 30mins of exercise, which obviously I'd be reluctant to do, is that right?

Yes, the averages would even out spikes but to my addled brain, it suggests that where a spike is shown either the actual spike was even higher or the rate shown was pretty consistent over that time.

I've dusted off my Polar HR monitor and did the 'poor man's tilt table test' suggested - I just about get the 30bpm spike, from approx 75bpm to 105bpm, so nowhere near as severe as some of you. I'll plan on doing a number of them to see what that shows me.

 

[PennyIA]

I know I got the same response. I've worn a heart monitor but they assume I'm being misleading about the activity level.

 

[Sea]

Was doing daily exercise for 13 months up until December last year, with hindsight this wasn't sensible of me but it was my last attempt at getting better that way, although, in my opinion, it limits the effect deconditioning should have on my HR results.

It doesn't actually take very long to lose conditioning when you stop exercising. I wouldn't expect exercising in December to have any impact on your heart rate now.

I'm pretty convinced that I have POTS and I have raised the subject with both my GP and the cardiologist that I saw but very much got the impression that they weren't interested in what I had to say - hand waving and talking about how the heart responds to any change and I'm in the 'normal' range, so frustrating, especially when brain fog hinders my ability to argue my point.

I don't think I've heard of anyone being able to convince a doctor or cardiologist of anything. It's a waste of precious energy to argue the point. The best advice is to find a doctor and cardio who are knowledgeable about POTS.

Just looked the that test up and it seems to need about 30mins of exercise, which obviously I'd be reluctant to do, is that right?

The test length depends on your capability. The fitter you are the longer it takes. Mostly though a maximal CPET is around 8-10mins for the average person and a test that only takes you to AT would be even less time and demand.

 

[halcyon]

Wouldn't the 5 minute averages 'even out' any spikes?

Probably, if that is indeed the sample rate for the graphs generated. I was talking more about the read out from the display on the fitbit, which clearly has a much faster sample rate than that, but it still slow by maybe 30-60 seconds.

 

[Little Bluestem]

The graph is for five-minute intervals.

Each data point is the averaged rate for 5 mins

 

[NL93]

When i started wearing my fitbit, my heart rate was in the "fatburn zone" for 4 to 5 hours a day.
I was hardly doing anything, but i interpreted the results as if i was still doing too much. Basically my body thought i was exercising 4 to 5 hours a day, which obviously isn't good
I tried to do even less, lying down in darkness and silence even more.
I got it down to 2 hours in the fatburn zone.
AND i started to feel much better. Started to feel like a sort of healthy person who was resting, instead of feeling so profoundly ill that i had no choice but to rest. Then gradually my body started to recover a little bit. I am now able to do more than 6 months ago, and my heart rate is lower while doing it.

 

[PennyIA]

When i started wearing my fitbit, my heart rate was in the "fatburn zone" for 4 to 5 hours a day.
I was hardly doing anything, but i interpreted the results as if i was still doing too much. Basically my body thought i was exercising 4 to 5 hours a day, which obviously isn't good
I tried to do even less, lying down in darkness and silence even more.
I got it down to 2 hours in the fatburn zone.
AND i started to feel much better. Started to feel like a sort of healthy person who was resting, instead of feeling so profoundly ill that i had no choice but to rest. Then gradually my body started to recover a little bit. I am now able to do more than 6 months ago, and my heart rate is lower while doing it.

This has just raised my interest in getting a fitbit. I would love to have the kind of feedback that my tolerance for exertion is lower than it was previously so that I can improve my aggressive pacing. I try to closely monitor my activity and keep it below my perceived limit. But when the limit can change without warning and the 'penalty' can be delayed... it can be very hard to know when you have to reduce activity levels.

 

[AndyPR]

Thanks for the feedback @NL93 - I think maybe that I need to be more 'aggressive' with my resting than I'm being at the moment. Perhaps we could even start 'extreme resting'.....

@PennyIA I would rate my Fitbit as good and helpful in having the ability to create the kind of chart in my original post already in place, the one thing it lacks though that I would now look for in any replacement is a heart rate alarm/alert, so that it would alert you when your heart rate goes over a certain number. I don't believe it can be accurate as a HR monitor with a chest strap but, on the other hand, freedom from a chest strap might make up for it.