Resource An Overview of Pacing and the Energy Envelope Hypothesis

[Cort]

Cort submitted a new resource:

An Overview of Pacing and the Energy Envelope Hypothesis - Why pacing is important for getting better

Most people with the illness are still doing too much….on the other hand,
perhaps 1 in 4 people are doing too little” Dr. Friedberg​

The Energy Envelope theory is founded on the idea that ME/CFS patients have a kind of physiological ‘safety’ zone available to chronic fatigue syndrome patients. It’s different for each person and is largely defined by how much activity you engage in. Partaking in too much mental or physical or even emotional...

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[weyland]

The "doing too little" thing to me smacks of the deconditioning/exercise phobia hypothesis. We have a hard enough time holding ourselves back from doing too much even when we're really sick. I really can't imagine someone that is doing better holding themselves back too much.

My experience has been that my activity level dynamically expands or contracts to fit my capacity for it. The limitations I impose on myself are constantly calculated by watching symptoms. If I was asymptomatic, I would impose no limitations.

 

[GG]

The "doing too little" thing to me smacks of the deconditioning/exercise phobia hypothesis. We have a hard enough time holding ourselves back from doing too much even when we're really sick. I really can't imagine someone that is doing better holding themselves back too much.

My experience has been that my activity level dynamically expands or contracts to fit my capacity for it. The limitations I impose on myself are constantly calculated by watching symptoms. If I was asymptomatic, I would impose no limitations.

How would you know you are holding back to much anyways? We know you are better off doing to little, than paying a price for doing to much!

GG

 

[IrisRV]

Continuous HR monitoring is the best tool I've found for achieving the most activity without doing myself more harm. Going by symptoms almost always results in doing too much. By the time you've got symptoms, you've already overdone.

When I first started HR monitoring, I found out I had to do A LOT less than I was doing. That was discouraging, but the result of staying in the right HR zone was that I stopped getting worse, I stopped roller coastering, I stopped having 'inexplicable' random crashes, and my treatments worked better.

As I stopped physically overstressing my body and my treatments started working, I found that I could very slowly do more while still staying under my target HR. Years later, I can do a lot more, but I still stay in my target HR zone.

You have to be strong, to have a lot of willpower, to be successful using HR monitoring to stay within your energy envelope. If you cheat, you pay in the long run. You can't decide to do more simply because you don't feel bad in the moment. That puts your body in a constant state of physiological stress.

I think it's Workwell's Mark VanNess who has a story about a woman who felt better and started a light exercise program. She didn't have symptoms when exercising and felt good about doing it. She came in for another CPET convinced that the extra mild exercise improved her condition. Wrong! She did worse on the new CPET test. She had been overworking her body without realizing it.

 

[Cort]

Continuous HR monitoring is the best tool I've found for achieving the most activity without doing myself more harm. Going by symptoms almost always results in doing too much. By the time you've got symptoms, you've already overdone.

When I first started HR monitoring, I found out I had to do A LOT less than I was doing. That was discouraging, but the result of staying in the right HR zone was that I stopped getting worse, I stopped roller coastering, I stopped having 'inexplicable' random crashes, and my treatments worked better.

As I stopped physically overstressing my body and my treatments started working, I found that I could very slowly do more while still staying under my target HR. Years later, I can do a lot more, but I still stay in my target HR zone.

You have to be strong, to have a lot of willpower, to be successful using HR monitoring to stay within your energy envelope. If you cheat, you pay in the long run. You can't decide to do more simply because you don't feel bad in the moment. That puts your body in a constant state of physiological stress.

I think it's Workwell's Mark VanNess who has a story about a woman who felt better and started a light exercise program. She didn't have symptoms when exercising and felt good about doing it. She came in for another CPET convinced that the extra mild exercise improved her condition. Wrong! She did worse on the new CPET test. She had been overworking her body without realizing it.

I'll bet HR monitoring is the best way to go. I need to start doing that.

 

[Seven]

@Cort if you can pls ever ask somebody how to use the HRM once you are in beta blockers???? I tried in every ME/OI presentation and my question never gets asked. I used to use the HRM for pacing and I do really recommend it (my AT is 115BPM) but once you get put on beta blocker that does not work anymore why I am struggling.

2) My envelope changes from day to day so is getting very impossible to know what I can do or not until is too late. I have no idea why my range varies sooooo much. Unlike everybody else's. I can be a 8 for a week then I wake up a 3 (doing exactly the same and eating exactly the same that week).

 

[IrisRV]

if you can pls ever ask somebody how to use the HRM once you are in beta blockers????

I'll try to remember to put that on my list of questions to ask Dr R at my appt next month. Do you think it makes a difference whether the tachy med is a beta blocker or a calcium channel blocker?

 

[IrisRV]

I'll bet HR monitoring is the best way to go. I need to start doing that.

It's very hard to get started and stay consistent. The temptation to overdo is overwhelming. What worked for me is using a continuous monitor with an alarm set a few BPM below my AT. Then I swore to myself I would sit or lie down when it went off, no matter what. I know myself and I would have been doing the old "Just a little more... it'll be fine" It took a tremendous amount of willpower, but it was worth it.

Another thing that helped is telling people around me that the alarm means I have to sit or lie down. You might as well tell them since they're going to hear the alarm go off anyway. I had an early teen daughter homeschooling at the time, so the house was always full of kids. They delighted in being allowed to boss me around and nag me. They wouldn't let me cheat, haha.

One big benefit of the continuous monitor with an alarm is that you don't have to think about it all the time and can just go about your business until you alarm. It's much less stressful/annoying and more consistent than trying to remember to check manually all the time. It's far too easy to just not look when you're in the middle of something you want to do.

It doesn't take long to see which of your normal activities are overdoing. For me it was walking across a room. Once you've trained yourself to not do those things or develop workarounds, it gets a lot easier.

 

[Veet]

@IrisRV or anyone else using them, what monitor are you using? thx.

 

[IrisRV]

I used to use an Omron brand with a chest strap. I haven't worn one for a while because I had developed an activity routine that wasn't ever setting off my alarm. Now that I'm starting to do more and different things, I need to get a new one to re-calibrate myself. Now they all seem to be wrist monitors, which is a huge improvement.

My daughter got a MIO Fuse, I think. I don't remember paying $100 for it. Hers doesn't have the sleep and calorie-tracking, iirc.

I like the all-day calorie tracking. My earliest HR monitor had that. It became clear that I could use x amount of energy in a day before things started going haywire. Knowing what my calorie limit was made planning and pacing much easier. I knew if I was more than halfway to my calorie limit by mid-day, I'd have to plan a quiet afternoon. I missed that feature when that monitor crapped out and I had to get a new one.

 

[lisaadele]

Continuous HR monitoring is the best tool I've found for achieving the most activity without doing myself more harm. Going by symptoms almost always results in doing too much. By the time you've got symptoms, you've already overdone.

When I first started HR monitoring, I found out I had to do A LOT less than I was doing. That was discouraging, but the result of staying in the right HR zone was that I stopped getting worse, I stopped roller coastering, I stopped having 'inexplicable' random crashes, and my treatments worked better.

As I stopped physically overstressing my body and my treatments started working, I found that I could very slowly do more while still staying under my target HR. Years later, I can do a lot more, but I still stay in my target HR zone.

You have to be strong, to have a lot of willpower, to be successful using HR monitoring to stay within your energy envelope. If you cheat, you pay in the long run. You can't decide to do more simply because you don't feel bad in the moment. That puts your body in a constant state of physiological stress.

I think it's Workwell's Mark VanNess who has a story about a woman who felt better and started a light exercise program. She didn't have symptoms when exercising and felt good about doing it. She came in for another CPET convinced that the extra mild exercise improved her condition. Wrong! She did worse on the new CPET test. She had been overworking her body without realizing it.

This was so encouraging to read. I feel inspired to give this a proper try.

I have had a couple of less sophisticated monitors that didn't work very well & after getting frustrated with it just abandoned the project altogether.

 

[Lissa]

It's very hard to get started and stay consistent. The temptation to overdo is overwhelming. What worked for me is using a continuous monitor with an alarm set a few BPM below my AT. Then I swore to myself I would sit or lie down when it went off, no matter what. I know myself and I would have been doing the old "Just a little more... it'll be fine" It took a tremendous amount of willpower, but it was worth it.

Another thing that helped is telling people around me that the alarm means I have to sit or lie down. You might as well tell them since they're going to hear the alarm go off anyway. I had an early teen daughter homeschooling at the time, so the house was always full of kids. They delighted in being allowed to boss me around and nag me. They wouldn't let me cheat, haha.

One big benefit of the continuous monitor with an alarm is that you don't have to think about it all the time and can just go about your business until you alarm. It's much less stressful/annoying and more consistent than trying to remember to check manually all the time. It's far too easy to just not look when you're in the middle of something you want to do.

It doesn't take long to see which of your normal activities are overdoing. For me it was walking across a room. Once you've trained yourself to not do those things or develop workarounds, it gets a lot easier.

That sounds inspiring! I had tried an alarm a few years ago and found that it only stressed me out. It was going off all the time -- I had calculated an AT of 105 or 110 I think? I couldn't do anything! Even talking would set it off. The beeping was so obnoxious that I stopped wearing it. It felt so stressful to be that attentive -- my heart seemed to go faster just listening to the alarm! I tapered off my expectations to match my discovery of how little I could actually do... and made an effort to pace better. I think I made progress, but maybe its time to break it out again and see where I am these days!

 

[IrisRV]

I had tried an alarm a few years ago and found that it only stressed me out. It was going off all the time -- I had calculated an AT of 105 or 110 I think? I couldn't do anything! Even talking would set it off.

I know what you mean.

The problem here is that if it's going off all the time, that's not a problem with the monitor, it's a problem with your body. You are constantly overdoing, which is not good for you. You may need to be couchbound for a while to let your body recover a bit from constantly overdoing. You might need a bit of Aggressive Rest Therapy.

At first, I was shocked at how little I could do without setting off the alarm. I couldn't walk across a room at a normal pace. I couldn't towel off after a shower. Stairs were definitely out. It was very, very hard to cut down to doing nearly nothing, but I decided I had to give it a fair try for several months. It became clear that I was much more predictable if I stayed below my AT. I could do a lot less, but I finally knew what I could do reliably. That made life much easier.

I realized I had been living in a constant state of PEM. No wonder I was getting worse and the treatments weren't working!

I learned workarounds to do things I had to do. Walking at a step-pause, step-pause pace was annoying, but I could get around the house without PEMing myself. I sat in the shower. I sat to towel off and dried my hair upside down. Hands above the heart and quick movements were out. You can learn to conserve energy to stay below your AT without giving up everything.

Another thing to think about is OI treatment if your normal HR is already close to 105.

 

[Lissa]

I know what you mean.

The problem here is that if it's going off all the time, that's not a problem with the monitor, it's a problem with your body. You are constantly overdoing, which is not good for you. You may need to be couchbound for a while to let your body recover a bit from constantly overdoing. You might need a bit of Aggressive Rest Therapy.

At first, I was shocked at how little I could do without setting off the alarm. I couldn't walk across a room at a normal pace. I couldn't towel off after a shower. Stairs were definitely out. It was very, very hard to cut down to doing nearly nothing, but I decided I had to give it a fair try for several months. It became clear that I was much more predictable if I stayed below my AT. I could do a lot less, but I finally knew what I could do reliably. That made life much easier.

I realized I had been living in a constant state of PEM. No wonder I was getting worse and the treatments weren't working!

I learned workarounds to do things I had to do. Walking at a step-pause, step-pause pace was annoying, but I could get around the house without PEMing myself. I sat in the shower. I sat to towel off and dried my hair upside down. Hands above the heart and quick movements were out. You can learn to conserve energy to stay below your AT without giving up everything.

Another thing to think about is OI treatment if your normal HR is already close to 105.

Fortunately my HR has improved over the past couple years. But it certainly wouldn't hurt to check again to see where my baseline is now. Ignorance has been bliss I guess... Ha haaa!

Worth doing though- thanks for the reminder!

 

[Veet]

Thanks Iris for the brands. I've just started using a BP monitor. I see that my pulse hasn't been generally going over 105. I finally went for a walk yesterday, and was 104 afterwards. And in the evening, taken after breaking into a sweat, it was 79 sitting, 103 standing. So maybe this isn't a measurement that offers much for me.

 

[IrisRV]

Fortunately my HR has improved over the past couple years.

That's great! How did you do it? My HR at AT has been rock steady no matter how well I'm functioning. I'd love to find a way to increase it. My HR is down with meds, but my AT is unchanged. I'm probably due for a new test, to banish or verify my wishful thinking that my AT has improved.

So maybe this isn't a measurement that offers much for me.

Doesn't sound like it unless your AT is under 100 bpm, which it could well be. Many PWME have ATs well below 100. If you broke a sweat, you were probably over your AT. Check the very rough equation -- 0.6*(220-age) to see if that 103-105 range is likely to be in your safe range. It isn't for me, but I could be a lot older than you.

 

[Kim Garrett]

I was simply told " stay in pain thrush holds" and no more than 10 minutes a work out . I thought ah huh okay . Well I guess some is better than none.

 

[IrisRV]

I was simply told " stay in pain thrush holds" and no more than 10 minutes a work out . I thought ah huh okay . Well I guess some is better than none.

10 minutes straight? When I was able to start a bit of exercise, I was told 30-60 seconds of exercise, 2-5 minutes rest, 30-60 seconds of exercise... for 3-5 sets. So a total of maybe 5 minutes of actual exercise each day. Drove me bananas. I couldn't do it. I added a minute to my ADLs here and there instead. 10 minutes straight of any kind of exercises would have destroyed me -- sent me over my AT big time. Still would, I imagine.

Now that I'm functional enough to actually do some strength exercise (not aerobic ), I go to a club with machines and do 30 seconds on a machine, 30-60 seconds rest, 30 seconds on a machine... HR has to return to baseline before I start a new machine, so some days I have to rest more than 60 seconds between.

I was also told to increase weight, not number of reps. We can sometimes improve our strength, but often not our stamina. I suppose it has something to do with mitochondria -- if they only produce so much energy, well, that's all they can do. Expecting more is not a good idea. So we have to let them recover far more often than the rest of the population does.

 

[Kim Garrett]

10 minutes straight? When I was able to start a bit of exercise, I was told 30-60 seconds of exercise, 2-5 minutes rest, 30-60 seconds of exercise... for 3-5 sets. So a total of maybe 5 minutes of actual exercise each day. Drove me bananas. I couldn't do it. I added a minute to my ADLs here and there instead. 10 minutes straight of any kind of exercises would have destroyed me -- sent me over my AT big time. Still would, I imagine.

Now that I'm functional enough to actually do some strength exercise (not aerobic ), I go to a club with machines and do 30 seconds on a machine, 30-60 seconds rest, 30 seconds on a machine... HR has to return to baseline before I start a new machine, so some days I have to rest more than 60 seconds between.

I was also told to increase weight, not number of reps. We can sometimes improve our strength, but often not our stamina. I suppose it has something to do with mitochondria -- if they only produce so much energy, well, that's all they can do. Expecting more is not a good idea. So we have to let them recover far more often than the rest of the population does.

Before I got sick . I was working out 5 to 7 days a week . 6 miles on my exercise bike and strength training . Rotating upper and lower body . My compacted has greatly demented now . So at this point they do not pressure me to do anything really . And my history with falls and weakness they just let lie

 

[Kim Garrett]

Before I got sick . I was working out 5 to 7 days a week . 6 miles on my exercise bike and strength training . Rotating upper and lower body . My compacted has greatly demented now . So at this point they do not pressure me to do anything really . And my history with falls and weakness they just let lie

Yes and I think it's hard for them to understand. They have no idea what it's like to lay there at times feeling like you barely have the strength to breath unable to say a word because the strength has escaped you . It's hard for people to grasp . It's more than being just tired . Until late they actually experience it . I don't think they completely will either