Using Heart rate monitoring to help with pacing.

People with ME/CFS usually find pacing the best strategy to try to avoid crashes and give the best chance of improvement over time. Some use activity diaries, others use step counters (pedometer/actometer), others use heart rate monitoring with the aim of using it to alert you to rises that take you over the aerobic threshold. This tells you when to stop and take a break rather than pushing through and trying to complete an activity.

A common way of calculating a personal threshold is (220 - age in years) multiplied by 0.6.

A description I found helpful is here:

http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

I have started this thread to invite people to share their experiences of using heart rate monitoring.

 

IIRC, that for PwME, it's likely that the normal age-based calculation is likely to overestimate our aerobic thresholds, possibly considerably.

I'm sorry I don't have a reference for that!

 

I've heard our AT may be lower than normal. I think I'd start with a lower threshold and see what happens. Maybe making adjustments. But that's just me.

 

I think (damn you, memory!) that the lower AT has been established by researchers/clinicians. The data may be in those CPET papers - the Workwell etc. stuff.

 

I use a Fitbit HR which I've had for a few months. I wear it all the time (except when charging, and when in the shower). I press a button on the side to see my step count so far that day and my current heart rate. On my tablet computer I can see the record of how my heart rate has varied through the day and night, and a graph of my resting heart rate day by day.

I am probably classed as severe (not very severe), needing to spend about 90% of the day resting on my bed.

Here are some of my findings so far. Make of them what you will.

Calculated aerobic threshold (220 - 68) x 0.6 = 91

Resting heart rate: varies from 66 to 72.

Sample effect of activities on heart rate:

Walk slowly from bed to kitchen (no stairs) fetch drink and snack, involving bending to fridge and reaching up to cupboard, return to bed. Pulse rate 96

Walk from bed to bathroom (no stairs), go to loo, undress and do sitting basin wash, dress, walk back to bed. Pulse rate 105

Walk to bathroom, undress, shower, wash hair (sitting on shower stool), dry and dress, walk back to bedroom, sit to dry hair with hairdryer. Pulse rate 125.

As you can see from that sample of activities, everything I do takes my pulse over my aerobic threshold.

I am lucky to get a state benefit that enables me to employ help with housekeeping, gardening and showering. I still exceed my aerobic threshold several times a day just dealing with my basic needs. I see no way around this.

I can tell from my symptoms that I have reached my threshold, feeling light headed, my legs feeling like giving way, and feeling increasingly weak and exhausted, so I'm pretty sure the figure is correct for me. By being more careful to split activities into tiny bits, I have noticed I am having fewer complete collapse / PEM days, so it is helpful.

If I tried to keep to below my threshold, I'd have to stay in bed all the time!

 

Here's what I do

220-49 *0.6= 103

My base heart rate is lowish (59, 48-50 while asleep).

I treat 100 bpm as my limit. I can cope with a couple of minutes between 100-120 but will get PEM if it is more than 120.

What I notice is that the more things I do in the day there is a compounding effect that makes bringing my heart rate down to base progressively more difficult (needling longer periods of lying down). So say if I have a shower and walk around the corner to get some eggs, I then have to rest up for the rest of the day until my walk to pick my son up from school, otherwise half way to the school I get beyond 120. It doesn't help there is slight incline as you go over a railway bridge, but I just walk very very slowly up,that bit and normally it's ok. On another day I can potter all day with lots of sitting down and my heart rate never gets over 90.

I guess I have a wider range because my heart rate has always been large output, low bpm.

 

I think your calculations and examples would pretty much mine if I were to try them, Trish, except that my resting heart rate has always been 75+, even when I was ridiculously fit.

 

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.

I did have one for a week or so before it went back (edit- in fact it was 2 but I couldn't figure out how to drive one of them, at all). I have a high resting heart rate, rarely falling below 80bpm even when lying down. I was seeing my HR go up to above 130 simply through standing up, above 140 from standing up in the bath, and routine lurching around would see it above 110 most of the time, with no "exertion". As my AT is somewhere around 102bpm (according to the formula) this probably negates the purpose of using one as it doesn't seem to be possible for me to do anything, at all, without exceeding my AT.

 

It can help to restructure activities a bit to avoid the worst problems. Eg, use a shower chair and rest for a minute or two after each bit of scrubbing, don't raise arms over your head (or tuck elbows down at least).

 

@Trish do you rest between showering/washing hair and getting dressed and drying hair? It's quite

a large chunk of activity in one go. I tend to have bath then rest with bathrobe on before dressing. The bathrobe saves having to dry myself.

And I don't usually wash my hair and shower on the same day. I do have longish hair though which is a bit of an ordeal to dry.

 

I'll remember that tip, Jan about leaving washing and drying my hair. It's not so much the washing and drying that's the problem, but the search and number process is quite energy intensive.

 

The topic of why I don't have a shower fitted is one for another thread, if it ever seems like a good idea, and feel like a pointless rant

I break every task up into absurdly small chunks as it is, I also use the dressing gown trick, tho I assumed it was coz I was inherently lazy not for any other reasons. Actually that's not entirely true, I use a dressing gown coz I rest before doing other things after a bath, like shaving or cleaning teeth - but lazy sounds so much more "normal" lol.

 

Hi @Jan, I tried that - wrapping myself in towels, lying down until my pulse dropped significantly, doing it a bit at a time, and I still had to spend the rest of the day in bed completely crashed out.

I now employ a carer to help with showering three times a week. It's surprising how much difference it makes having someone else helping haul clothes on and off, and washing and drying me. Instead of my pulse rate going over 120 after my shower, it's more like 100, and I'm not completely wiped for the rest of the day.

 

My get ready time is about 2 hrs ...I also rest on the bed after a shower. When I first got my HRM. I discovered that I wasn't putting my socks on efficiently. Bending is definitely not good same for putting on shoes...better to sit and bring your leg half way up rather than bend down to it.

 

I have a Beurer PM25 .

• High and low HR audio alarm.
  
• No phone needed,
• Watch is comfortable,
  
• with a clear display,
  
• Low power mode if it stops receiving a signal.
• Chest strap is not uncomfortable.
• Watch strap slightly on the short side.
• Battery life seems ok.
• Has day and date on display .
  
• can tell you how long you've been above a self set HR zone.
  
• Can't be too expensive as I bought it

The instruction manual is there if you want to examine further.

 

Yeah, it's the chest strap that's putting me off, I already have a polar chest strap and whilst it's not actively "uncomfortable", I am always aware of it, and have never been able to wear it without being so.

I've also tried a vivoactive HR, after a day or so that was quite uncomfortable and it took over a week for the damage it did to my wrist to fade. It also seemed to think I needed to eat over 5000kcal a day for some reason, possibly because of my high resting heart rate, it went back. I've also tried a fenix 5, nice bit of kit, if you can drive it, I couldn't, not even to get a HR out of it.

I've been considering the new vivoactive 3, but, apart from looks and the fact it's a bit more solid, it's basically the HR, with the option of using straps that don't annoy my skin, hopefully. And it seems from some reports it may still be a bit buggy, and if I couldn't get the HR to report going up out of a HR zone, I see no reason why the version 3 would be any easier, whilst "some" of the other things it does would be nice, the must have is a HR alert when my AT is breached.

What's annoying is older models seemed to be able to do it, they had upper and lower bounds on heart rate zones, but firmware updates have removed this, or so it seems. Deal breakers are that it shouldn't upset my skin, and that it shouldn't break/fall apart when I move (which rules out the fitbits according to reviews lol).

I'll find something eventually

 

One of things i like about it is that the watch is good just as a watch, so if I decided I didn't like the strap or how it monitored, at least I hadn't wasted all the money.

 

I used to wear my HR monitor 24 hours a day, and take my BP atleast 10 times a day. Now I simply listen to my breathing, which has been a better source for me to determine how my pacing is coming along. Secondly, I notice my agility and coordination; when they start to decline I immediately stop everything, lie down, and relax.

 

I use the coordination one too...when I start dropping things that's when it's time to sit/lie down