Sneaking past exercise intolerance
Staying fit in spite of exercise intolerance…or maybe even beating it?
The biggest problem I’ve had since I first got sick in 2015 is that exercise triggers rough patches —classic “exercise intolerance.” And so one of the things I’ve wanted to try since the beginning of Project Try Everything is very gradual fitness improvement. Since a full frontal assault on fitness always goes badly, can I … sneak up it? If I increase the difficulty of exercise v e r y s l o w l y, can I safely reach fitness levels I’ve been unable to for the last few years? Without triggering a meltdown?
Or — and this is the fear — do I have a maximum tolerance for exercise that I am going to hit no matter how slowly I work up to it?
I’m about eight months into experimenting with this. I’m definitely not done — emphasizing how hard it is to “try everything.” But I have been through two phases of trying to “sneak past exercise intolerance,” one before COVID hit this summer, and another since then. I have good news (maybe) and bad news (probably).
But before I get to that, I'll explain the rationale for this approach first.
How do you stay in shape when you cannot tolerate exercise? Or barely?
People with ME/CFS are sick. They are so sick that they cannot exercise effectively any more than someone going through chemotherapy. It is extremely clear that most are not just lazy/deconditioned and can actually get quite a lot sicker when they exercise, a distint phenomenon known as “exercise intolerance.” The notorious British PACE trial got all this spectacularly wrong, with serious consequences for a generation of ME/CFS sufferers. [1] [2] Repeat after me:
Exercise can actually harm ME/CFS patients!
Exercise can actually harm ME/CFS patients!
Exercise can actually harm ME/CFS patients!
This is clear in the case of ME/CFS, but it applies to most unexplained chronic illness. Exercise is only pushed on patients who have no objectively obvious disease.
I extoll the virtues of exercise-as-medicine extensively on PainScience.com. However, I no longer ever speak of exercise being “the next best thing to a miracle cure” [3] without at least mentioning the phenomenon of exercise intolerance — because it such a potent, serious, and relatively unknown caveat for so many people with chronic illness and pain.
But the only thing worse than exercise intolerance is also being seriously de-conditioned. Knowing that we may be getting literally weaker, our condition ever more destructive, adds substantially to our frustration and depression. And so most ME/CFS patients certainly want to be as fit as we possibly can be. We just want to do it safely! We want a solution.
Given the legacy of PACE, it’s ironic that the solution is actually still “pacing” … just with a different goal, and slower and more careful.
Pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate.
~ Fatigue Can Shatter a Person, Ed Yong (in his last post for The Atlantic) [4]
How do you work around exercise intolerance?
Some ideas…
Many ME/CFS patients can maintain some degree of physical fitness, but some really just cannot — and it’s dangerous to even try. However, whatever capacity you do have, however little, it is wise to use it (or lose that too).
The challenge is identical in principle to what healthier people face: everyone must find their Goldilocks zone. The difference is that the Goldilocks zone for ME/CFS patients is much smaller, so it require much more meticulous “load management.” You must pay much closer attention to activity levels and stressors, much like a diabetic has to pay way closer attention to diet and blood sugar than non-diabetics. Healthy people have a crapload more “leeway” than, and yet they still routinely overdo and underdo it … but mostly out of ignorance, carelessness. They haven’t been forced by experience to be super careful!
It is often necessary to redefine "exercise," and to consider and include quite easy activities that most people wouldn't call "exercise." For you, taking the dog out for a pee and climb three flights of stairs might not register as a workout for a healthy person, but it can be your workout!
Most people with exercise intolerance have good days and bad days … and weeks, and even months. It’s important to learn to recognize them as best you can, to adapt to the changes in how much exercise can be tolerated. Periods of remission are precious. Pounce on those opportunities! But pounce gently, being careful not to overdo it and cause a relapse. Conversely, it’s important to skip the vulnerable days, or at least take it easier. The threshold for triggering exercise intolerance gets even lower when you're compromised by, say, sleep deprivation. Small doses of exercise that might be fine while well-rested could be a real problem on days when you’re not.
Fitness is not just about exercise — it’s about protecting and optimizing your ability to exercise. Optimize every other possible thing, especially diet and sleep. Don’t sabotage fitness in other ways with preventable failures. The more days you have to skip due to sleep loss that might have been prevented, the more fitness it costs!
The scenario that every ME/CFS sufferer dreads: the Goldilocks zone shrinking down to almost nothing, such a small target that they can no longer hit it, no matter how careful they are. And there are people in that predicament. However, most ME/CFS patients can, with careful load management, probably keep themselves fitter than an couch potato.
If fatigue was an Olympic sport, I’d probably come in fourth so I didn’t have to walk up to the podium.
~ unknown
Can exercise intolerance be beaten by building up fitness very slowly?
Many people with exercise intolerance can probably preserve a lot of their physical fitness despite their illness. But what about actually getting better? What if we respected the limits of exercise intolerance but also still tried to progress beyond it?
In general, the PACE trial was wrong because it was based on the bogus assumption that the only problem was de-conditioning, and so it recommended exercise that was too much like an ordinary get-back-in-shape challenge, and that is doomed to collide with fundamental pathological limitations. Some causes of exercise intolerance are never going to be beaten by exercise, just impossible in principle, like trying to cure cancer with push-ups.
In some people, it might be possible in theory, but just too difficult in practice.
And maybe a few people can work through exercise intolerance. If they go slow enough. Maybe. The strategy would be just extremely slow progression, with great caution about never overdoing it. Very baby steps. Painfully slow. So slow that it seems almost ridiculous.
For instance, running just a single kilometre… and then, three days later, running 1.1 kilometres!
And that is what I’ve been trying: sneaking up on my limits! Without much hope. But I had to try.
The first test of very slow exercise progression: probably failed
Quitting ultimate was a pre-requisite for this: I couldn’t very well test a cautious exercise regimen while I was still regularly, recklessly overdosing on exercise! Getting rid of those overdoses was one of the things I wanted to try… and then I could move on to testing super slow exercise progression.
From May through August I did my first full experiment.
It seemed to end badly and just how I feared: I advanced with no problems until I hit the same limits that have plagued me for the last several years. It was a disappointment, but not particularly harsh: I’m used to hitting my limits, both by accident and deliberately, and paying the price. And I was moving slowly, so there was no major overdose, nothing even as bad as what I had routinely suffered with ultimate.
But it was just clear that I felt lousy after workouts. The exercise intolerance seems to have just been waiting for me.
And then I got COVID. I definitely got sick after I had already decided that I’d hit my limit, and I’d been stuck at that level for at least a couple weeks. Maybe if I’d stuck with it I would have slowly, painstakingly pushed through that limit? But that was fairly unlikely, and then COVID made it a moot point.
The second test: looking good, but too soon to call
After COVID, I resumed exercising as soon as I possibly could, about three weeks after the infection, beginning with some of the easiest “workouts” I’ve ever done.
Three months later, I’m now roughly at the same point I was when I hit my limits this summer — but doing better! I feel okay, and I have started to see some signs of progressing beyond my historical limits. Exciting!
Here's that graph again, my last twenty-two runs (averaging about 4 days apart):
As you can see, I got excited and impatient and carried away … and I screwed up by speeding up! But … I also got away with it… which has added significantly to my (still premature) excitement. After 3 runs that were arguably really pushing my luck, I still feel okay. No sign that I’ve triggered the exercise intolerance. Yet. And this is definitely further than I got this summer.
The next month should be interesting.
Cynically, I fully expect this experiment to be disrupted by something like another case of covid, or some other bug, or even just the holidays (which often seem to take over). That is just what happens with life, and that’s is why it’s so very difficult and slow to “try everything”!
Notes
www.virology.ws [Internet]. Tuller D. Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study; 2017 August 17 [cited 21 Nov 18].
www.nytimes.com [Internet]. Rehmeyer J, Tuller D. Getting It Wrong on Chronic Fatigue Syndrome; 2021 November 18 [cited 23 Aug 30].
The huge but notoriously flawed PACE trial seemed to support the idea that chronic fatigue syndrome patients are just de-conditioned and therefore need to suck it up and exercise, slowly building themselves back up again. This was evidence-based medicine at its very worst: one low quality but influential study drowning out both contradictory evidence and patient voices. It has become the most extreme example of telling sick people that their illness is “all in your head.” Julie Rehmeyer and David Tuller’s NYT piece is the canonical summary of the whole debacle.
Academy of Medical Royal Colleges. Exercise: The miracle cure and the role of the doctor in promoting it. AOMRC.org.uk. 2015 Feb.
This citation is the primary authoritative source of the quote “exercise is the closest thing there is to a miracle cure” (although it are no doubt many variations on it from other sources over the years).
www.theatlantic.com [Internet]. Yong E. Fatigue Can Shatter a Person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience; 2023 August 3 [cited 23 Aug 3].
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.