Resource An Overview of Pacing and the Energy Envelope Hypothesis

[Lissa]

That's great! How did you do it?

Not sure that my AT has improved at all. My HR is way less erratic these days though. For instance, a few years ago simply laughing shot it up to 132. Being out in the garden for a few minutes on a hot day sent it up to a frightening 176 once. I usually never felt it pounding -- just the wristband told me the actual numbers.

I wore the monitor for a while to re-gauge my activity levels, and I turned the alarm part off lest it drive me batty all day long. I would continue watching the numbers and curtailing my activity - just without the sound. That helped me adjust my expectations, and to learn to ask for help more often. It was good to have "proof" as to why I felt so crappy all the time.

Fast forward (hah hah... Like we even know what that is now, with our slow motion lives...), and I had stopped wearing the monitor daily because quite frankly the chest strap was uncomfortable after a few hours. Between pacing myself better, and probably my regimen of various supplements, (who knows which specific ones helped?) I seem to be doing much better with my HR being pretty stable.

For the past few years my resting HR was in the 70's, sometimes 60's even. Yet POTS would make it jump to the 90's or low 100's in the process of standing. Then it would come back down again, staying below the AT while active. (Active as we know being relative.... Brushing my teeth, showering, etc.)

However, I've been handling thyroid issues in the last few months - and if anything I'm starting to think that HR may be getting more erratic again. It would be worth wearing the gadget again to find out for sure.[/QUOTE]

 

[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.

Iris what kind of strength training are you doing because at this point I haven't been able to do anything. Because if I over do it in will end up dizzy and in pain and fatigued for days

 

[IrisRV]

@Lissa
Ah, I see. I'm pretty much in the same boat -- much more stable now that I know what I can and can't do. Those chest straps are a pain, quite literally sometimes. Now that my daughter has a wristband one, I'm going to borrow it and recalibrate what I can and can't do.

Treatment did make a difference in how much I can do and stay under my AT. Sounds like it's the same with you. OI treatment helped a lot. Are you managing to get treatment for your POTS?

Doh!!!! My reply got morphed into the quote box.... Whoops!

If you want to bother, you can fix that. Add [/quote] after my question and delete any similar quote statements around yours and that should clean it up.

 

[IrisRV]

Iris what kind of strength training are you doing because at this point I haven't been able to do anything. Because if I over do it in will end up dizzy and in pain and fatigued for days

I need to say upfront that if you have uncontrolled OI, you'll probably won't have much success with even strength exercise unless you can do it all lying down. It sounds like you might have some form of OI that's not yet well-treated.

Short answer:
I can do sitting back, chest, shoulders, abdominal exercises in sets of about 10 reps in 30 seconds with 30-60 seconds rest sitting or lying down between sets. See here for the machines I use (scroll about halfway down the page to the woman in purple). I can do 8 of these machines with some restrictions for a total of 8 minutes of exercise. Then I do some stretching.

The MS trust has some good at-home exercises suitable for PWME. I do better if I go to the club.

Long answer:
My women's fitness club (Curves) has a circuit of machines that runs 30 secs on a machine, 30 secs of aerobics, 30 secs of machine.... This works great for me because I'm forced to quit a machine after 30 secs and rest. During the 30 secs of aerobic, I sit or lie down. If I need more than 30 secs rest, I just step out of the circuit to rest and jump in again when I'm ready. I also do the machines at about half the speed of most people, so about 10 reps in 30 secs.

As a former gymnast, I would have avoided the "silly girly" Curves as wussy. I stopped in because it's only 3 blocks from home, so I figured I ought to look at least. Turns out their program works really well for PWME who can exercise a little. I explained my exercise/energy limitations and they've been tremendously supportive. I don't have to deal with gym rats looking down on me or the coaches trying to push me.

I cannot do most any the machines that require standing. I just take extra rest or skip them when I come to them. Generally the leg ones are too hard on me, too. Big muscles using too much energy perhaps. I am managing 2-3 reps on the sitting leg machines. Not much, but I might as well do something while I'm sitting there. Arms-over-head machines send my HR up rapidly, so those are out now, too. I have to move slowly, so about 10 reps per machine. If I don't follow those restrictions, I PEM myself sure enough.

I decided which machines to use, and how many reps to do by checking my HR using a fingertip pulse oximeter. If my HR climbs fast or doesn't recover in 30 secs, that machine is out for me.

What's left is mostly back, chest, shoulders, and abdominal machines. I can do 6 Curves machines for 30 sec each and 2 machines for 15 sec each in a single circuit. I can do 2-3 circuits, so 8-12 mins of exercise in 15-30 mins. Then I stretch for 10-15 mins.

I can do machines at the club better than at-home exercise on the same time schedule. It feels less like I'm doing practically nothing, and I'm forced to quit when I should.

 

[Veet]

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.


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.

AT = anaerobic threshold? The equation works out at 92.4. You're younger than I. So I shouldn't be getting over this when exercising?

We can sometimes improve our strength, but often not our stamina. Your exercise guidelines are excellent, thanks.

 

[IrisRV]

AT = anaerobic threshold? The equation works out at 92.4. You're younger than I. So I shouldn't be getting over this when exercising?

Yep, AT = anaerobic threshold. If yours is 92, you've been overdoing it at 104. If your HR was 104 after your walk, it was probably even higher during your walk. You might need to cut that walk shorter. So yes, you probably shouldn't go over 92 bpm until you get better data on your actual AT. It might be higher or lower. The 92 is just a very rough estimate.

If you only want to check your HR during certain activities, such as on your walk, a pulse oximeter would work and is a lot cheaper than an HR monitor -- $15-30 US.

I would caution most people starting HR monitoring not to simply spot check when you think you may be overdoing. I was astounded at the number of everyday things I thought were fine for me, but were actually overdoing. If you're not continuously monitoring all day (in the beginning at least), you are almost certainly not seeing all the times you are overdoing. You need to modify those activities to stay below your AT or you'll probably be in a constant state of PEM.

For example: when I started monitoring, I would have said I was mild-moderate with a couple of months-long PEM episodes a year. I was wrong I was closer to severe. There were many things I was doing over my AT every day in order to appear mild-moderate -- things like walking more than 10 ft, climbing stairs, showering, toweling dry, dressing, cooking a simple meal, putting away groceries, making the bed, pretty much all housework. Everything needed modifying or eliminating. Who knew? Not me. And I would never have known if I hadn't monitored during normal activities.

 

[Lissa]

@Lissa


Treatment did make a difference in how much I can do and stay under my AT. Sounds like it's the same with you. OI treatment helped a lot. Are you managing to get treatment for your POTS?

I have not treated for POTS. Technically speaking my doctor has not diagnosed it. In their terms it is tachycardia when they see it happen at the office. But from researching and reading other's experiences I've learned it's actually POTS.

I'm hesitant to use beta blockers-- in my mind it's just more pills to swallow, possible side effects, and even less money in my pocket. I'm trying to do herbals mostly for everything else. The less money going to pharmaceutical companies the better! Hah!

I do have a good naturopath who said he could do saline IV, but I haven't resorted to that. I'm hoping it never gets bad enough to warrant that. Good to know its there if I need it though.

Will definitely need to see what my latest baseline is. Maybe this weekend I'll bust out the old HR strap!

Thanks for your input @IrisRV

 

[IrisRV]

I have not treated for POTS. Technically speaking my doctor has not diagnosed it. In their terms it is tachycardia when they see it happen at the office. But from researching and reading other's experiences I've learned it's actually POTS.

I'm hesitant to use beta blockers--

Many PWME have low blood volume and/or forms of OI other than classic POTS. There are a number of treatments other than beta-blockers, depending on your flavor of OI. I don't take a beta blocker as part of my OI treatment. Still, most of those treatments are more pills and money in the pharms companies pockets. If you don't want to go that way, there's not much point to investigating along those lines.

A couple of non-pharma interventions that might help are compression garments and increasing electrolytes and fluids. They don't work in many cases, but they do in some, so they're always worth trying if OI is getting in your way.

Good luck with whatever treatments you choose! If you have success with a non-pharma intervention, please share. I think there are quite a few people here who would be very interested in improving their OI without meds.

 

[Veet]

Thanks so much @IrisRV This is not exactly welcome news, but it's certainly invaluable. (re extreme limiting of activities) But things don't change just by limiting, right? It must have taken some sort of treatment to shift you into tolerating more activity? The good news is now I can attribute some of my *sickness behavior* to these circulatory issues. I've just not been able to push myself up from lying and reading for significant parts of the day.

This looks like a good resource, just posted elsewhere. I've been wanting a POTS info site. Dysautonomia Information network http://dinet.org/

 

[IrisRV]

But things don't change just by limiting, right? It must have taken some sort of treatment to shift you into tolerating more activity?

ETA: Dang, I've gone long-winded again. When life is more difficult than usual, I tend to revert to professorial lecture mode. I don't have the energy to edit.

Here's the short answer:
Some things do change by limiting. You can do more, in a way, just by pacing. However, imo it takes treatments to get significantly more total energy/functionality.
________________________________________________________________________________________________________________________________________________________

The long-winded answer:
Think of it this way: your energy is like money. Everything costs something. Sadly, we're broke in energy currency. We're not going to get richer. So what do we do?

Suppose you're broke, but you keep going on expensive month-long vacations, buying designer clothes, and eating out at expensive restaurants every week. You can't pay the power bill. You can barely afford the most basic groceries. You can't afford to put gas in your car. You can't pay the mortgage so you're likely to lose your house. The creditors are after you which causes you untold emotional stress. You're not keeping track of your bills and expenditures, so you never know from one week to the next if you'll have enough money to eat. You're roller-coastering -- sometimes living high, sometimes barely surviving.

That's us if we don't pace correctly. We're living beyond our means. We often don't have the energy for the basics. We don't know from one day to the next how much energy we'll have. It's out of control and very stressful.

So, you give up the extravagances. You don't buy designer clothes. Does that mean you can't by any clothes? No. You might even be able to buy more clothes than before, just less expensive ones. You might eat better in the long run because you're not blowing a huge chunk of your food budget once a week and eating white bread and baloney the rest of the time.

Get the idea? Limiting ourselves with pacing doesn't mean we do nothing. Chances are we are going to be able to do more in some areas. On balance, we can do more, just less extravagantly.

So in a way you can do more by limiting yourself. Pacing is far from a cure. It's not going to change what's wrong with our bodies. We're still broke. But there's a good chance you can live better than you did before pacing. You'll probably be able to live a more predictable, less stressful life. You might find you can do more by doing less.


If you don't fritter away your energy unnecessarily, you have more energy for things you want (or need) to do. Why waste energy standing to shower and dress when you could sit? Why waste energy going up and down the stairs 3 times a day, when with a little planning (and determination) you can only do it once? Why waste your precious, limited aerobic energy stores when you can use your easily replenished low-level anaerobic metabolism? You just have to do things by the very littles. If you don't waste the small amount you have, you can do more overall.

I can't go for my 6 block walk anymore, but I can visit a friend, go to a movie, and watch my kid's soccer match all in the same week instead. Do I blow all my energy on one big energy-consumer, or do I do several low-energy activities? Am I doing more? I guess that's all in your perspective. There's no question I'm limited. I'm not doing my 6 block walk and doing more activities. I'm doing more less expensive activities.

I don't believe pacing is going to improve our condition hugely. It doesn't deal with what's wrong with our bodies. But the simple fact that by pacing we're no longer continuously doing the equivalent of running all day means a number of symptoms are likely to improve. Stopping abusing our bodies has got to help, at least a little.

IMO, it takes treatments, not just pacing, to get improvements in our total energy. I don't know why or how that works. For me, antivirals were big. Maybe not having to fight off multiple infections means my body has more energy for other activities. Or maybe it's something else entirely. Who knows? What does seem to be true is that very few, if any, PWME find that by pacing alone, they can eventually do what they did pre-pacing and a lot more.

 

[Seven]

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

I tried a few. To be honest I have HUGE breast (DDD) so when I use the belts in the chest the reasing is not great because they get pushed away.
2) I STINKKKKKKKKKK so baaaaaaaaaad no matter how much I use baking soda, and wash the belt, after a few months of use the smell was too bad for me,. I am very sensitive to bad smells in my body so might not be so bad for others.

3) I love love love my new one is strap free and always accurate is the MIO. Down side is EXPENSIVE. but for all the issues I had I don't care for the use I have for it.
The belt one was Polar but was very accurate and good. Just the chest strap was my issue.

 

[Seven]

what kind of strength training are you doing because at this point I haven't been able to do anything

Try laying down and start very little (like beans cans or whatever cans you have) then go up. So lay flat in the floor facing up. Lift your cans and watch your heart rate. Keep HR under AT. If your HR shoots up over AT, then you are not ready to do even that. If HR stays under AT, do like 10 reps (or less if you hit AT) then rest for 5 minutes and go like 3 sets. Increase every 2 weeks only if you do not have PEM. if you have PEM go down. to where you were. Keep eye in HR so it goes down within the hour of exercise. If it dones't you over did it.

Is better to start with laughable amounts and increase slowly that way you do not crash and you learn to experiment with yourself.

At first focus where you pool blood the most. For me is legs and tummy, I can tell because is very obvious, If you start by those, your OI will get better and you will be able to transition faster to sitting then standing "exercises".

 

[IrisRV]

At first focus where you pool blood the most.

This is more important than many people realize. If you have blood pooling (not all of us do), stronger leg and abdominal muscless can improve OI which will make you more functional. It doesn't help general stamina, ie more energy, but if OI is getting in the way of your function, this kind of careful exercise could give you an improved quality of life. So in this limited situation, increasing exercise can improve functionality somewhat.

It's critical to remember that we're not shooting for more stamina in this case. Just more strength in particular muscles. Increase weight, not number of reps (or so I was told).

To make sure I'm being clear -- this kind of increasing exercise isn't going to give PWME more energy. We all know how well GET works. In some cases, however, it can improve OI -- which is a benefit.

I don't have blood pooling, but my arms were getting so weak I was having trouble with simple household lifting. I was also beginning to struggle with posture issues from weak back and abdominal muscles. After 8 months of exercise at 30 sec exercise (~10 reps), 30-60 secs rest, ~16 times, changing muscle groups after every exercise, I feel I've accomplished something. There is no question I'm a bit stronger and I can hold my body in a sitting or standing position more comfortably. I have not improved the amount of daily activity I can do before PEM. Not even a little. I can't do the exercises any faster, nor can I consistently add more sets without PEM. I'm just a little stronger.

 

[tatt]

Wasn't quite sure where to put this but I've recently become aware that it's possible to measure lactate in muscles without blood test using this device http://www.dcrainmaker.com/2016/01/insight-depth-review.html

It seems to me that this would offer an alternative to heart rate monitoring and is something that almost requires a research study of its own - to see if people with ME hit lactate thresholds at a different time to other people.

 

[weyland]

to see if people with ME hit lactate thresholds at a different time to other people.

I believe several studies have already shown that we do have early and excessive lactic acid production in muscles.

 

[madie]

I've never used a HR monitor. I'm liking the idea of wrist models. If anybody has specific recommendations, please share them. I saw that Iris wasn't sure about her daughter's model. I have insomnia, and am interested in the sleep tracking also, if anybody knows about that. I don't have a smart phone.

How do we calculate our safety zone, as PWCFS? Can I just use the formula back a few posts, or are we wacky?

 

[tatt]

I bought a fitbug orb as a sleep tracker. It's useless. At the moment there isn't one that is a reasonable price and worth having. There is one due out in May that may be better http://www.cloudtag.com/

 

[IrisRV]

It seems to me that this would offer an alternative to heart rate monitoring and is something that almost requires a research study of its own - to see if people with ME hit lactate thresholds at a different time to other people.

The lactate threshold is at essentially the same place as the anaerobic threshold because lactate is produced when you go anaerobic. Lowered anaerobic threshold (AT) in PWME has been shown in multiple studies.

As far as I can tell, this is really no different from an exercise test on a treadmill except that you're not in a hospital/clinic so when you collapse from running to your body's limit you'll have to cope on your own.

 

[IrisRV]

How do we calculate our safety zone, as PWCFS? Can I just use the formula back a few posts, or are we wacky?

We're wacky. For your average healthy person (And who's that average person anyway?), the AT occurs at about 80% of maximum capacity. In many cases a rough age-based HR at max capacity (220-age) is used because it's nontrivial to find your maximum capacity using a maximal exercise test.

Exercise physiologists who know ME are suggesting that we hit our AT closer to 60% of maximum capacity, and that can vary a lot among PWME. That's where the 60% in the formula comes from. If you don't have solid data on your own physiology, you're stuck using a bunch of rough estimates.

You can use the equation above or the table below which is just a tabular form of that formula. Find your age, then find the HR at 60% capacity. So, if you are a 45yo PWME, your AT might be 105 bpm. It's an estimate, but better than nothing. It's also important to remember that while the chart says that's the bottom of the weight control/fitness/fat burn range, the equivalent amount of physical effort for a PWME might occur from walking across a room or climbing a half-flight of stairs. Don't expect to jog at 60% max, like a healthy person can.

It puts things in perspective when you finally get it through your head that the things you do at your AT (showering, walking to the mailbox, getting out of bed) are equivalent to a healthy person doing hardcore training. Think about it. That is above cardio training. Do you want to spend a significant part of your day doing the equivalent of hardcore training? Your body is not going to thank you for that.

Give your body a break and start pacing.

 

[lisaadele]

I took the plunge and started pacing with a hr monitor... It's a Polar brand with a chest strap. I don't find it great as it has cut out a few times but for now it is getting the job done.

It HAS been discouraging for the past couple of days because like others have said it goes off so easily. But I'm taking what Iris said to heart (no pun intended!) and really slowing down and breaking up activities. That does work. It's really surprising how little it takes though to go high. Also interesting how a short rest break sitting or lying makes it go low.

My usual pattern would be to just get some things done - be efficient - so that I could go rest but it is clearer now that being efficient was putting me well over my AT.

I am wondering if the amount of activity it takes to go over your AT varies - if you are in a bad stretch and feeling worse compared to a good week? Or do you find it is a more fixed thing?