This post and comments are so helpful. I’m on this journey as well. I’m still functional enough to still go to work, but only because it is not full time and I’ve had to adjust hours. I have had to drop doing stairs and all the exercise I was doing 2 years ago. I’m noticing how weak I’ve become, and it makes my joint pain worse. It’s hard to imagine running.
I’ve recently returned to trying 2.5 minutes of cardio and up 10-20 min yoga poses/mobilizing joints to keep my shoulder moveable. On bad days I do the poses/mobilizations in bed.
Ugh - the brain fog! Makes it so hard to even set a goal to improve.
Here’s to s l o w improvement, and not overdoing it!
Thank you, Paul, for further clarification. I too want to use pacing as an actual therapy and not just as a way to cope. I can cope by lying in bed all day and have it kill me that way, but how boring. I too was at a high level of fitness at the start, in 2015, but I did too much crashing and pushing along the way. But if I can be dumb enough to get this bad by going about it all wrong, then I can be smart enough to maybe, actually improve. Ok, well it wouldn't be me being smart enough, it would be me following your example backed by Midge’s and your own clarifications. But I will be steadfast and stubborn enough. I can't tell you how much you have helped me in so many ways through these years. I wish you continued improvement! If it won't work for me, it has to work for you! You're such a badass, even if you don't feel like one. ❤️❤️ Jody
Hi Midge, you have made it so clear. I think you are completely right and I couldn't see or understand through all the confusion and brain fog. I don't know that I eventually would have so I can't thank you enough. It seems the big difference is exactly what you said about no external targets but relying on one’s inner clues. I hope things are going as well for you as for Paul.
First let me congratulate you on being able to run at all! I know firsthand the whole added agony of this illness is knowing exercise will kill you, but knowing also that no exercising will kill you. And now, no pacing. I'm still not sure what the difference between what you are doing and pacing is, other than the knowledge that pacing doesn't "cure" you. Am I understanding this correctly?
I am finally in the dreaded space of any movement, including walking to the mailbox, sends me into a crash. Movement, stressful conversation, thinking too much all seem to precipitate a crash, especially moving around too much. I've been reading everywhere that crashing and then moving forward once you feel better again is a sure way to make this thing worse. And that is what happened here. I crashed, recovered, moved mildly on, crashed again, etc. So I have hit bottom but how to get back up is still elusive to me. Obviously avoiding crashes is the answer, but what is it the answer to? Just not crashing? If so, here I am doing nothing and surely deconditioning with each day. But you have been able to add on a bit to what you can do, obviously without crashing. It seems to me you are getting better! I suppose I can add a little to "doing nothing" each day, being careful, but how is that not pacing? I'm confused! f
If you answer, please remember the hideous brain fog if you are thinking, "she just doesn't get it!" I've been an athlete all of my life so I understand how you felt and how happy you must be. And I am happy for you! I don't even want to run anymore, just walk without consequences, you know?
"knowing exercise will kill you, but knowing also that no exercising will kill you"
That was nicely said, Jody. 🙂
As for the distinction between "pacing" and what I’m doing, Midge pretty much had it there (and I also like that "takes money to make money" analogy). But I'll add a bit of clarification, because all the different ways of defining pacing are indeed a bit confusing! But basically it’s just a matter of degree.
As well-defined by MEpedia, the intent of pacing is "stop BEFORE you overdo it," because it is "not a therapy, but a coping strategy." The intent is to preserve as much fitness as possible, but stay within the limits imposed by exercise intolerance.
What I’m doing is actually attempting to change the limit, to use pacing as a therapy by very carefully and slowly trying to push past the limit. I do this knowing full well that it may not work, but the hypothesis is that it MIGHT work in SOME people if the progression is slow enough.
And right now my workouts are roughly AT the limit. The progress of the last 3 months wasn't pushing PAST my limit, but slowly working up TO my limit (which I know from long experience).
And if I was doing pacing just to "cope" and not "treat," I would now STOP at this intensity, hovering just below my limit. 🙂 That would be standard pacing-to-cope.
I am going to keep progressing… but VERY slowly, the tiniest measurable increases. If I don’t trigger any setbacks, MAYBE the exercise intolerance will yield. Pacing-to-breakthrough? So my next 2-3 weeks are the "moment of truth" for this experiment.
I could be wrong, but I think Paul is saying “yes pacing”, and documenting success (so far) with using pacing to gradually increase exercise tolerance (knowing there could be setbacks anytime).
MEpedia summarizes pacing principles as,
1) Stop before you overdo it
2) No [external] plans or targets but [rely on your own body’s] internal cues
3) Switching (between activities to avoid overstraining any one particular faculty — what PainScience might call relative rest)
4) Use a diary or activity tracker (if you’re up to it and you find that it helps)
So pacing isn’t a therapy (6), but helps you budget energy to do the therapies you tolerate, including exercise therapy. And it allows for cautiously, gradually trying out increased activity (5).
Your predicament, an activity budget so limited that figuring out how to recondition under it would strain anyone’s ingenuity, sounds extremely frustrating!
The old saying, “It takes money to make money,” seems to apply to exercise tolerance, too. I hope you catch a lucky break soon that gives you some leeway to experiment.
That's great progress. How are you monitoring your effort during runs? It will be important to ensure you are well within the aerobic zone. You can use Dr. Phil Maffetones Maximum Aerobic Function (MAF). It involves training at an intensity that allows you to develop your aerobic system without going into anaerobic metabolism. Your correct heart rate can roughly be calculated by subtracting your age from 180 and adjusting for certain factors like fitness level and health.
Some peoples aerobic systems are so neglected (thrashed) that they often have to just walk to remain in the aerobic zone. They can be overtrained in this case, called aerobic deficiency syndrome (ADS). It can be very slow progress to remedy this if you have it, but a well worthwhile journey in the long run.
I have a watch for monitoring my workouts. I’m always far into the aerobic zone on my runs, usually 150-170 bpm, possibly even too high. My exercise intolerance is mild, so I have always been surprisingly fit for someone with that problem. I was fit when disaster struck in 2015, and have clung to that stubbornly, and so I am still quite functional if I stay within my limits. Indeed, I do more than many people who don’t have those limits!
But I can't do nearly as much as truly healthy AND fit people. And holy hell things get ugly fast if I try to push past my limits.
With those figures it sounds like you are deep into the anerobic zone quite often. Well trained athletes who have been studied were found to naturally follow paretos principle (80/20 rule). 80% of their training was Easy running (HR zone 2) and 20% was MODERATE to hard running (emphasis on moderate) HR Zone 3-5. Those that broke this principle were either under trained, over trained, stale, hitting glass ceilings etc.
To find your exact HR zones you would need to do a lactate threshold test with an exercise physiologist etc. Otherwise use the MAF rule.
Thinking about it more a lot of your symptoms remind me of athletes who suffer from Relative Energy Deficiency Syndrome in Sport (RED-S syndrome).
This post and comments are so helpful. I’m on this journey as well. I’m still functional enough to still go to work, but only because it is not full time and I’ve had to adjust hours. I have had to drop doing stairs and all the exercise I was doing 2 years ago. I’m noticing how weak I’ve become, and it makes my joint pain worse. It’s hard to imagine running.
I’ve recently returned to trying 2.5 minutes of cardio and up 10-20 min yoga poses/mobilizing joints to keep my shoulder moveable. On bad days I do the poses/mobilizations in bed.
Ugh - the brain fog! Makes it so hard to even set a goal to improve.
Here’s to s l o w improvement, and not overdoing it!
Thank you, Paul, for further clarification. I too want to use pacing as an actual therapy and not just as a way to cope. I can cope by lying in bed all day and have it kill me that way, but how boring. I too was at a high level of fitness at the start, in 2015, but I did too much crashing and pushing along the way. But if I can be dumb enough to get this bad by going about it all wrong, then I can be smart enough to maybe, actually improve. Ok, well it wouldn't be me being smart enough, it would be me following your example backed by Midge’s and your own clarifications. But I will be steadfast and stubborn enough. I can't tell you how much you have helped me in so many ways through these years. I wish you continued improvement! If it won't work for me, it has to work for you! You're such a badass, even if you don't feel like one. ❤️❤️ Jody
Hi Midge, you have made it so clear. I think you are completely right and I couldn't see or understand through all the confusion and brain fog. I don't know that I eventually would have so I can't thank you enough. It seems the big difference is exactly what you said about no external targets but relying on one’s inner clues. I hope things are going as well for you as for Paul.
First let me congratulate you on being able to run at all! I know firsthand the whole added agony of this illness is knowing exercise will kill you, but knowing also that no exercising will kill you. And now, no pacing. I'm still not sure what the difference between what you are doing and pacing is, other than the knowledge that pacing doesn't "cure" you. Am I understanding this correctly?
I am finally in the dreaded space of any movement, including walking to the mailbox, sends me into a crash. Movement, stressful conversation, thinking too much all seem to precipitate a crash, especially moving around too much. I've been reading everywhere that crashing and then moving forward once you feel better again is a sure way to make this thing worse. And that is what happened here. I crashed, recovered, moved mildly on, crashed again, etc. So I have hit bottom but how to get back up is still elusive to me. Obviously avoiding crashes is the answer, but what is it the answer to? Just not crashing? If so, here I am doing nothing and surely deconditioning with each day. But you have been able to add on a bit to what you can do, obviously without crashing. It seems to me you are getting better! I suppose I can add a little to "doing nothing" each day, being careful, but how is that not pacing? I'm confused! f
If you answer, please remember the hideous brain fog if you are thinking, "she just doesn't get it!" I've been an athlete all of my life so I understand how you felt and how happy you must be. And I am happy for you! I don't even want to run anymore, just walk without consequences, you know?
Thanks for listening,
Jody Eastman
"knowing exercise will kill you, but knowing also that no exercising will kill you"
That was nicely said, Jody. 🙂
As for the distinction between "pacing" and what I’m doing, Midge pretty much had it there (and I also like that "takes money to make money" analogy). But I'll add a bit of clarification, because all the different ways of defining pacing are indeed a bit confusing! But basically it’s just a matter of degree.
As well-defined by MEpedia, the intent of pacing is "stop BEFORE you overdo it," because it is "not a therapy, but a coping strategy." The intent is to preserve as much fitness as possible, but stay within the limits imposed by exercise intolerance.
What I’m doing is actually attempting to change the limit, to use pacing as a therapy by very carefully and slowly trying to push past the limit. I do this knowing full well that it may not work, but the hypothesis is that it MIGHT work in SOME people if the progression is slow enough.
And right now my workouts are roughly AT the limit. The progress of the last 3 months wasn't pushing PAST my limit, but slowly working up TO my limit (which I know from long experience).
And if I was doing pacing just to "cope" and not "treat," I would now STOP at this intensity, hovering just below my limit. 🙂 That would be standard pacing-to-cope.
I am going to keep progressing… but VERY slowly, the tiniest measurable increases. If I don’t trigger any setbacks, MAYBE the exercise intolerance will yield. Pacing-to-breakthrough? So my next 2-3 weeks are the "moment of truth" for this experiment.
I could be wrong, but I think Paul is saying “yes pacing”, and documenting success (so far) with using pacing to gradually increase exercise tolerance (knowing there could be setbacks anytime).
MEpedia summarizes pacing principles as,
1) Stop before you overdo it
2) No [external] plans or targets but [rely on your own body’s] internal cues
3) Switching (between activities to avoid overstraining any one particular faculty — what PainScience might call relative rest)
4) Use a diary or activity tracker (if you’re up to it and you find that it helps)
5) Increase activity when you are ready
6) Pacing is not a therapy, but a coping strategy
https://me-pedia.org/wiki/Pacing
So pacing isn’t a therapy (6), but helps you budget energy to do the therapies you tolerate, including exercise therapy. And it allows for cautiously, gradually trying out increased activity (5).
Your predicament, an activity budget so limited that figuring out how to recondition under it would strain anyone’s ingenuity, sounds extremely frustrating!
The old saying, “It takes money to make money,” seems to apply to exercise tolerance, too. I hope you catch a lucky break soon that gives you some leeway to experiment.
That's great progress. How are you monitoring your effort during runs? It will be important to ensure you are well within the aerobic zone. You can use Dr. Phil Maffetones Maximum Aerobic Function (MAF). It involves training at an intensity that allows you to develop your aerobic system without going into anaerobic metabolism. Your correct heart rate can roughly be calculated by subtracting your age from 180 and adjusting for certain factors like fitness level and health.
Some peoples aerobic systems are so neglected (thrashed) that they often have to just walk to remain in the aerobic zone. They can be overtrained in this case, called aerobic deficiency syndrome (ADS). It can be very slow progress to remedy this if you have it, but a well worthwhile journey in the long run.
JK
I have a watch for monitoring my workouts. I’m always far into the aerobic zone on my runs, usually 150-170 bpm, possibly even too high. My exercise intolerance is mild, so I have always been surprisingly fit for someone with that problem. I was fit when disaster struck in 2015, and have clung to that stubbornly, and so I am still quite functional if I stay within my limits. Indeed, I do more than many people who don’t have those limits!
But I can't do nearly as much as truly healthy AND fit people. And holy hell things get ugly fast if I try to push past my limits.
With those figures it sounds like you are deep into the anerobic zone quite often. Well trained athletes who have been studied were found to naturally follow paretos principle (80/20 rule). 80% of their training was Easy running (HR zone 2) and 20% was MODERATE to hard running (emphasis on moderate) HR Zone 3-5. Those that broke this principle were either under trained, over trained, stale, hitting glass ceilings etc.
To find your exact HR zones you would need to do a lactate threshold test with an exercise physiologist etc. Otherwise use the MAF rule.
Thinking about it more a lot of your symptoms remind me of athletes who suffer from Relative Energy Deficiency Syndrome in Sport (RED-S syndrome).
Here's a symptoms illustrated chart: https://images.app.goo.gl/qWgbTkVHQWYRN6un6
It's a condition athletes can be stuck in for years before the penny drops.
I know a sports nutritionist who specialises in helping people rehab out of this problem.
By the way I'm a running coach as well as a Neuromuscular Therapist in case you were wondering!
Another avenue to explore Paul.
JK