Rough Crash - HR Monitor be damned

[SDSue]

I knew I'd done too much in the past couple of weeks. I kept my heart rate under the magical tipping point, but still, here I am. Another difficult lesson.

I had developed a false sense of security while wearing my HR monitor - I fooled myself into thinking that if I just kept that number down, I wouldn't crash .... and I got cocky and pushed my limits. My monitor screamed at me and I ignored it. I have a love-hate relationship with that thing.

So here I am, vertigo, vomit, diarrhea, tremor, HA, and all the other crap we know so well. Another crash. Another hole from which I must climb. Another chance to lie in bed for an unspecified period of time, worried that this one will stick.

Any suggestions on how to (properly) use and respect the HR monitor? 'Cause apparently I have no idea.

 

[SOC]

Any suggestions on how to (properly) use and respect the HR monitor? 'Cause apparently I have no idea.

Unfortunately, there's probably no one best way that works for everyone. Here's what works for me, though.

MY AT is an absolute top-end instant stop boundary, not a working level. I can't function continuously just below my AT or I will go into a slow decline and eventually crash. I can go up to it for specific, brief exertions like climbing stairs, but for routine activities I have to stay well below my AT -- maybe 20 bpm below it.

If I get up to my AT, I have to stop immediately and sit or lie down. If I go over my AT for more than a minute (or less) I'm pretty much guaranteed to have a crash. There is NO ignoring the HR alarm if I want to avoid PEM.

One helpful (for me) measure is to watch how fast my HR is climbing when I'm being active. When it starts to climb rapidly, even if it's still well below my AT, I know that activity is a little too much and that comes off my mental list of safe activities. For example, there was a long stretch where unloading the dishwasher (or anything else that required having my arms above shoulder level) was off my safe list because it could make my HR shoot up in no time flat. I couldn't do it with any degree of regularity without overdoing.

That also works for slower, longer-term activities like standing at the whiteboard teaching. I can do it for a while, but if I do it too long, my HR starts to climb rapidly and I know it's time to stop even if I'm well below my AT. This is how I manage to do as much as I can without crashing -- by watching not only my AT, but the rate at which my HR is increasing.

Over Memorial Day weekend I went out to some gardens and decided to walk a bit (about 100 yds) instead of wheelchair because I've been feeling better and thought I could handle it. I forgot my HR monitor, but decided it was okay because I've become a pretty good judge of what is too much. WRONG! A 100yd slow stroll stopping to look at flowers, which did not bother me at the time, resulted 3-4 days later (the usual delay for me) in a full-blown PEM crash.

I can't judge without the equipment. I don't feel particularly bad in the moment, I just get the PEM hit 4 days later. I suppose I have to keep reminding myself the hard way that without the hard data, I simply can't judge what is in that borderline region of overdoing. Sure, I know better than to go for a run or clean the garage, but the everyday, "Maybe I could...." stuff is too hard to tell without the data.

 

[Sushi]

@SDSue @SOC

My experience agrees with SOC's. I can't stay at the top of my limit. If I get up there, I have to get it down 10 or 15 beats quickly. Generally I prefer to stay much lower than my guesstimated AT (I haven't been tested but have a pretty good idea.) Alarms mean business!

I am most comfortable about 30 beats lower than my assumed AT, though I have a low resting HR.

Sushi

 

[SDSue]

@SOC and @Sushi That is very helpful. Thanks so much.

My AT, judging from personal experience while I await a proper CPET test, is 120. I have apparently been making the mistake of hovering too long near that level. And you are right - unloading the dishwasher is not on the safe list. Nor is showering.

Once I am out of bed again (fingers crossed for a quick end to this) I will follow this advice.

Am I relatively close on my estimate of AT if my RHR is 65? Perhaps I'm also guessing too high? May I ask what your numbers are?

Thanks.

 

[Sushi]

@SOC and @Sushi That is very helpful. Thanks so much.

My AT, judging from personal experience while I await a proper CPET test, is 120. I have apparently been making the mistake of hovering too long near that level. And you are right - unloading the dishwasher is not on the safe list. Nor is showering.

Once I am out of bed again (fingers crossed for a quick end to this) I will follow this advice.

Am I relatively close on my estimate of AT if my RHR is 65? Perhaps I'm also guessing too high? May I ask what your numbers are?

Thanks.

I'd guess that your guess is too high. Just from how I respond (so I am guessing not following a formula) I shouldn't go above 100, though my resting HR is lower than yours, about 55. If I am doing something like a lying-down pilates class I keep it between 70 - 85

Sushi

 

[SDSue]

Looks like it's time to lower that number. I told you I hate that thing lol

Oh, to again be limited only by time!

 

[Ruthie24]

I think on the videos I've seen, both Staci and Connie have said a good place to guess for AT would be at 60% of your target exercise HR. You can calculate that using the (220 - your age) x .6 = your target.

I was tested and my second day AT was a little below this number but not much.

I've been using a fitbit and a HR monitor and I'm still having trouble pacing and not over-doing things so you're not alone in this department.

 

[SDSue]

@Ruthie24 Yikes! Looks like I overshot that by a mile lol. I'm going to have to cross a lot of things off my list - things which clearly crashed me anyway. Good to know!

 

[Ruthie24]

I'm on a beta-blocker for my POTS stuff which makes all this more complicated to figure out as well. The rule of thumb is that if you check your morning resting HR and it's elevated then you're supposed to decrease activity for the day and not exercise etc.

One of my problems is, I've found that on days when I have overdone it, my MRHR actually drops significantly and runs much lower. It's almost like I don't have enough energy to raise my HR. Other days, just rolling over to get my monitor will send my HR up 30-40 BPM so it's been hard to figure out a consistent pattern even at baseline.

Then there's that stubborn little part of my brain that thinks "this time I'll be able to sneak this little bit of extra activity in and my body won't notice." Every once in awhile it actually seems to work or at least the pay back isn't SO horrible that I learn my lesson. It's kind of like a gambling addiction I'm beginning to think. That intermittent reinforcement is just enough to keep you trying....

 

[SOC]

@SOC and @Sushi That is very helpful. Thanks so much.

My AT, judging from personal experience while I await a proper CPET test, is 120. I have apparently been making the mistake of hovering too long near that level. And you are right - unloading the dishwasher is not on the safe list. Nor is showering.

Once I am out of bed again (fingers crossed for a quick end to this) I will follow this advice.

Am I relatively close on my estimate of AT if my RHR is 65? Perhaps I'm also guessing too high? May I ask what your numbers are?

Thanks.

My AT is 125, which is at the higher end for PWME, but at the time I was tested my RHR was in the 90's, so that may have been a factor. I suspect if I had a 2-day CPET today, my AT would actually be found to be significantly lower on the second day.

My wild guess is that 120 bpm is too high unless you're 20yo. I'm betting your tested AT will be closer to 100 bpm. One way I've heard to estimate for PWME is (220-age)*0.6

I generally stay between 80 and 95 for my normal activities. My RHR now (with treatment) is 65-70.

Once I got better treatment for OI, unloading the dishwasher and showering got easier. I still sit in the shower, but can stand some of the time and don't have to go to bed afterwards anymore.

ETA: Looks like I came late to the party and just repeated what others already said. Oh well, maybe it bears repeating.

 

[alex3619]

One thing that gets lost in the talk of keeping the HR low, is that exercise is not the only thing that can cause a crash.

Too much activity duration can possibly do it. We don't have huge energy reserves. The exercise programs put together for us at Workwell are low intensity and short duration.

Heart rate is only one guide. Controlling that improves pacing, but its not a magic bullet.

The heart rate set for the AT is also not a fixed number. I suspect it moves. If it drops and you operate at the old number, then you are above your limit. Look for puffing/panting. If that happens you know you are operating at too high an intensity or for too long.

Coming into contact with allergens, food or chemicals we might be sensitive to, bacteria, viruses, mold etc, all of these are possible crash causes. I have had some bad food crashes in the past.

If I have any rotting food around, say it gets dropped and bounces behind the fridge, then I crash.

If I have even a very mild infection then I might crash ... though sometimes even a serious flu does not cause a crash beyond the flu crash itself.. I think the type of infection is important.

 

[SDSue]

@Ruthie24 I was JUST wondering about this. I'm in a crash and my HR is much lower than usual. But it also goes much higher with ANY activity, even rolling over in bed. Geesh, I wonder what my BP is up to lol.

Comparison to a gambling addiction is priceless. It IS a gamble every time I do anything. I fail repeatedly, and yet I go right back to my own personal "slot machine" every time, stuffing in activities rather than nickels, and expecting different results. You're a genus

 

[SDSue]

Heart rate is only one guide. Controlling that improves pacing, but its not a magic bullet.

Dangit, @alex3619 , I was looking for that magic bullet! It would seem that hope really does spring eternal.

And yes, I think you're right that the AT moves, dependant on what I've done in the previous 4 days.

I seem to have a quiet little voice inside that tells me I'm doing too much. I usually try to stuff a rag in it's mouth ....... and then I pay.

 

[alex3619]

Dangit, @alex3619 , I was looking for that magic bullet! It would seem that hope really does spring eternal.

And yes, I think you're right that the AT moves, dependant on what I've done in the previous 4 days.

I seem to have a quiet little voice inside that tells me I'm doing too much. I usually try to stuff a rag in it's mouth ....... and then I pay.

I have had ME a very long time. I have been pacing for way over a decade. I still have times I do too much. My intuition nearly always says I can handle something a little more than I can.

 

[SOC]

One thing that gets lost in the talk of keeping the HR low, is that exercise is not the only thing that can cause a crash.

Too much activity duration can possibly do it. We don't have huge energy reserves. The exercise programs put together for us at Workwell are low intensity and short duration.

Heart rate is only one guide. Controlling that improves pacing, but its not a magic bullet.

No, it is certainly not a magic bullet. There a no guarantees anywhere with this illness.

Look for puffing/panting. If that happens you know you are operating at too high an intensity or for too long.

That never worked for me. If I wait until I'm puffing/panting, I've gone WAY too far.

Coming into contact with allergens, food or chemicals we might be sensitive to, bacteria, viruses, mold etc, all of these are possible crash causes. I have had some bad food crashes in the past.

If I have any rotting food around, say it gets dropped and bounces behind the fridge, then I crash.

If I have even a very mild infection then I might crash ... though sometimes even a serious flu does not cause a crash beyond the flu crash itself.. I think the type of infection is important.

Oh yes, overdoing is not the only thing that can cause a crash. It is the one I have some degree of control over, however. An infection will crash me even if I'm pacing perfectly (hah!). I don't know if I call that kind of crash PEM, exactly. For me they are somewhat different. Not that it really matters. A crash is a crash.

 

[Ruthie24]

@SOC- I am SO impressed that you can correlate your PEM with what you did 4 days previously. I can't even remember what I did this morning let alone trying to figure out how it impacts me 4 days later. It's a helpful tip that you keep your HR that far below your AT. I'm usually right on the edge of my AT most of the time I'm upright. Maybe that's why pacing hasn't been so successful for me.

@alex3619- according to what Staci Stevens told me when I did the 2 day test, your supposition is correct in that AT moves and doesn't stay the same from day to day depending on multiple factors like infection, diet, lack of sleep, fatigue level, allergies, etc etc.

@SDSue - you are too funny. I love the "stuffing a rag in the mouth" of your quiet little voice and the image of stuffing activities in your personal slot machine. You have quite a way with words!

 

[SOC]

@SOC- I am SO impressed that you can correlate your PEM with what you did 4 days previously. I can't even remember what I did this morning let alone trying to figure out how it impacts me 4 days later.

I think it actually helped that my PEM happens several days after the exertion and hits like a truck. Long before we knew about ME, my family noticed the strange way I felt terrible consistently exactly 4 days after we did something exceptional. It was a joke for years. It wasn't until we learned about ME and PEM that we had some explanation for it.

As time went by and I got sicker so that everything I did was overdoing, I was in a constant state of PEM. At that point there was really no way to connect any particular behavior with the symptoms. Now that I'm a lot better and not constantly sick and exhausted, we can see the clear connection between some specific overexertion and the PEM again.

If I relied on my memory, I'd never know. It was my friends and family who first noticed it. I was just trying to survive from one day to the next at that point.

 

[alex3619]

I learnt a lot by keeping a symptom journal for several years, along with what I did, what I ate, what supplements I took. Written memory is far better than my feeble brain memory.

 

[NK17]

Another fellow gambler here who would like to pick your amazing brains. Honestly if PwithoutME were so wise and knowledgable they would all be part of the MENSA club .

I've been living with ME for decades, I've been basically home bound and bed bound for 9 months now but never got a HR monitor.

I don't think I've POTS (tilt table test last year was negative) but definitely a form of OI.

As all of you I know that any activity that requires standing and/or raising my arms above the shoulders is a big no no (emptying the damn dishwasher and taking showers while standings are memories of the past ;().

Last summer I wanted to do the CPET 2 days test here in SoCal with Stacy Stevens, but Dr. K suggested to save the money and probably avoid a major relapse/crash.

Here I am now a year later, in much worse physical condition, on Valcyte and regretting not having done the test.

What shall I do? Should I get a Fitbit? Should I push and have the CEPT test done (it might be useful to apply for disability if I continue on the path I've been it's highly possible that I'll need it).

Today I was in a total body pain mode, but decided to drive 9 blocks to the polling post to vote with my mail in voting ballot and managed to walk 100 feet with no "apparent" distress.

We'll see how and when PEM/PENE will set in ...

I'd like your candid and wise opinions .

 

[NK17]

I learnt a lot by keeping a symptom journal for several years, along with what I did, what I ate, what supplements I took. Written memory is far better than my feeble brain memory.

Still haven't resolved to keep such a written log.
I guess I'll start to do it. My memory is quite good, but my lack of concentration is of epic magnitude.
Still manage to be quite fluent in 3 languages, I confess I talk to my cat in french while I'm confined at home all day, it's my form of mental gymnastic .