I've been this methodical with my food intake trying to figure out my gut issues. I'm rarely able to explain it so my healthy friends get it. But when I read your account of how you didn't push past x, or didn't add more km than y - I get that.
Bummer enough that my stomach absolutely sucks but I had POTs back in 2012 before it was as well known as it is now. Back when Dr's just thought I was some chick with anxiety. I was actively fainting and couldn't figure out what was happening. Why I share this is to say that I did get better being very methodical at progressing my standing tolerance, exercise tolerance, retraining my nervous system. My way probably isn't the way, but it worked for me.
All this to say that there's always the chance that recovery is in your future. My body is glitchy and I have to pay attention but I did get back to doing almost everything I previously could do. And the same could be true for you too.
Hello Paul. So glad to hear you are back at it trying to beat this beast. I am still at no energy but then again I was never one to do anything related to exercise. Walking is and always has been a mode of transportation for me, growing up in Germany. I still hope that if I could ever get a good 3-4 hours of sleep in at night I could move mountains. Anything that I take to make me sleep for that amount of hours I feel more exhausted when I get up.
Keep up the good work and don’t give up, you got it. I know you are doing a lot of research in regards to this so I probably won’t be able to give you any useful information you have not already considered or explored yourself. To tell you the truth I, for now, have given up finding a reason why I feel the way I do.
Oh yeah, reading the comments others left, this is another change I made. My original goal was to stay around 118lbs, well now I am glad if I keep up with 107…yes it explains the lack of energy but if I don’t feel well I can’t eat. And when I do, I keep on eating but I don’t gain any weight. I know some folks who have the opposite issue might not understand but by now I would be glad to put on some weight.
Early in my disability I was able to do this too! I blew it ONE TIME though...hiked up something I knew I shouldn't have...and I never did get recovered past it (years later). Stopping at 5k is wise for now!
Just between you and me and anyone following the comments… my second 5k run hit really hard, despite postponing it a bit. Might be a few days before I find out just how hard it hit.
That delay varies with the form of exercise. If I overdo it with walking, the consequences hit while I’m still walking and stop me — which has been murder on hiking, but at least it was obvious.
But running … I dunno, maybe it’s the endorphins, but I often feel really great for a few hours after. But then I get the first warning signs by late in the day. The problem is is that I can then spend the next two days not knowing how high the price was, because it’s as much about how long it lasts as how intense it is. Many, many times I’ve thought, "This isn't bad, I’m okay, I got away with it!"
But then it JUST KEEPS GOING, and a week later I still feel truck-hit, and I’m no longer thinking I got away with it.
Dear Paul, like you I used to be a very athletic, sporty person. I got sick 15 years ago and it has affected my ability to work, exercise, walk, even for a period of about 6 months I was too ill to eat properly and lost a worrying amount of weight. Roughly two years ago I got treatment for Mast Cell Activation syndrome and I am geting slowly better and can allow myself to hope again. It has been a hard, slow road because unlike the USA the medical profession here in England & Wales does not agree that MCAS exists, so within the NHS there is no treatment for it. Anyway I don't want to suggest something you’ve already tried (like you, I get masses of “have you tried X” suggestions!) , but have you been assessed/treated for MCAS. With best wishes for the future x
I'm not sure about Canada (where Paul lives), but medicos in the US also disagree as to whether MCAS exists.
Which is funny, since there are obviously all sorts of ways mast cells can activate dysfunctionally, specific instances of which (like asthma and allergies) are well accepted.
I was diagnosed with EDS, which often overlaps with MCAS, decades after I was diagnosed with allergies and asthma. To this day, US allergists disagree on whether, say, GI disturbance in reaction to airborne allergens is something they should acknowledge. Some do, but many are more into reassuring patients not to worry about such things (which is less-than-reassuring to the patients it happens to!).
I fit a typical MCAS gal profile ("Indeed, an MCAS patient’s history often will date back to a childhood of excessive 'colic,' 'allergies,' 'food intolerances,' dysmenorrhea/menorrhagia soon after menarche, and other inflammatory or allergic-type problems either incorrectly diagnosed as normal or dismissed as of unknown cause and insignificant." https://www.degruyterbrill.com/document/doi/10.1515/dx-2020-0005/html ). And, when I forget my Montelukast, prescribed for asthma, *everything* gets "mysteriously" worse :-) Still, I sense that the US doctors I have access to would find MCAS a redundant label for a patient who already has diagnosed allergies and asthma ("*of course* the patient has dysfunctional mast-cell activation – that's clear from the other labels, no need to humor the patient with *another* 'special' label!")
So I haven't sought treatment for MCAS as such, though I continue to hope that appropriate treatment of my asthma and allergies (which I'm already struggling to get) may also result in taming less-acknowledged mast-cell-mediated symptoms.
The "realness" of MCAS is endorsed by no less a skeptic that Dr. Steven Novella: "Mast Cell Activation Disorder is real, but there are a large number of fake diagnoses out there. How do you tell the difference?"
I have tried. HRV was one of the things I tracked during my particularly diligent "tracking all the things" phase, hoping it might be validated as a useful signal. Unfortunately, it was not: sometimes it harmonized with what was obviously going on, and other times it pointed exactly the wrong way.
My experience is that HRV doesn’t correlate very well with my overall state. Although it did predict an illness at least twice before I felt it coming on. Resting HR seems to correlate pretty well. reliably high when sick or fatigued from intense exercise.
I’ve heard similar from others, but have yet to see a clear pattern. Possible I have a measurement problem: I’m just using my Apple Watch's HRV estimate. I check on the data every now and then, either when I’ve got something notable going on subjectively (to see if it's reflected by an unusual HRV number), or I just check recent data to see if there are highs/lows that correlate with anything I can remember. It’s so noisy that I'll probably stop trying soon. But before giving up on HRV, I should try another way of measuring.
Yep, good idea. Worth a "try" in the spirit of "try everything," for sure! Just added it to the big list.
Hopefully the Apple Watch data isn't completely useless. I might fully expect it to be out of step with expectations on any one day, or just unable to pick up on a subtle vulnerability that I’m unsure of myself (e.g. an infection coming on).
But I would expect it to be able to at least show relative trends that correlate with fairly major multiday physiological events — and so far it hasn't even done that. So either HRV just isn't actually that good an indicator with me …or the Apple Watch is amazingly bad at measuring HRV … or perhaps a bit of both. 🙂
Paul, this is absolutely NOT a “have you tried…”, just something I’ve been musing about as a sedentary, out of shape, middle-aged dad: Based on the assumption that “any exercise is good exercise”, for a person who does serious workouts like yourself, would it be feasible/advisable to ‘top up’ those sessions with low-effort activities like, say, a walking pad, or one of those under-the-desk foot cycles? I’m not sure that’s even achievable during a period of exercise intolerance, but maybe for overweight normals like me?
Not every "have you tried" comment is objectional, but thank you for being careful about it. 🙂
"Topping up" is basically just more load during recovery, a concept probably best known as "active recovery." If you can tolerate it, great — it’s essentially just a way to keep that exercise ball rolling when you're still recovering from a more intense workout. But it’s not risk free, and even healthy people risk overdoing it with this strategy, not giving themselves enough time to recover … and if that's true for healthy people, it’s even more of a risk with exercise intolerance.
Thank you! A helpful reply and a handy reminder to always check the articles. The thing about Project Try Everything is that yes, you probably have tried it.
That’s so cool, you must be thrilled. I love the adaptation of exertion level to the circumstances of the day; that was such a radical idea for me but it is the vital key to being able to have behavioural consistency in these contexts I have learned! And the need to limit any increase to a very slight 5% or so no matter how good the day - same here, and it still surprises me. My scale is all so much smaller (12-15 min walks, never running) but the principles match, and it’s reassuring to see! Woohoo!
I’ve talked to quite a few people over the years who have struggled with exactly the same principles, applying them to varying degrees of severity of exercise intolerance. The worse it is, the finickier it gets. The margins for error get so narrow, and the consequences of error so much worse, that it seems almost impossible: just too sick for anything a healthy person would recognize as "exercise."
And yet! I suspect the logic still applies: even if it’s very little, you fight to maintain whatever activity can possibly be maintained.
Or maybe you just say fuck it and let biology have its way with you and make sure you enjoy plenty of ice cream while you still can. 😜
This is such an inspirational post, thank you for sharing! Well done on the 5K! I’m currently suffering with what I think is bilateral gluteal tendinopathy but I haven’t had a scan to prove it. But the result is I can’t do Any cardio right now and your description of how you’ve done this is sort of how I’ve been contemplating any sort of recovery, with micro-esque increments, I can’t even manage 1 min now without a flare up! Anyway I’m very pleased for you! I suppose if you didn’t want to push further you could try a different form of cardio like a light row, or a short ruck for a short distance.
Re "different form of cardio" — that's actually also a part of how I got here, and the topic of the next post!
That easy flaring we call high "irritability," a distinct concept from how much something hurts: how easily it is triggered. And high irritability calls for a "let shit calm down" phase of rehab, where you maximally baby those hurty bits. I recently went through some super high irritability with my shoulder incident. Those phases feel like they are never going to end! But they do. Usually. 🙂
Kudos on your persistence AND discipline to increment so gradually.
I’ve experience what I think was post/long-COVID a couple of times and it was brutal… I could run 30 minutes and feel great, 45 minutes and feel tired but ok, but if I went over that, just 5 more minutes—even if I felt great during the run—I could count on an intense headache and fatigue precisely 4 hours later that might last days.
Thankfully, I think I’m past that (although, I also haven’t tried longer runs for some time now). I can point to a number of things I think helped (more frequent slower runs, more sleep, creatine or ketone supplementation, etc.), but it’s very likely to simply be an indeterminable time for full recovery to happen.
Here’s hoping you can maintain it for a good stretch!
You've definitely experienced "exercise intolerance" then! That reaction a few hours later … yep. Even when you feel great during, which always feels so UNFAIR, y'know?
And the only way to navigate that is a lot of painful experimentation.
Really happy to hear you got free of it. How long was that phase?
I've been this methodical with my food intake trying to figure out my gut issues. I'm rarely able to explain it so my healthy friends get it. But when I read your account of how you didn't push past x, or didn't add more km than y - I get that.
Bummer enough that my stomach absolutely sucks but I had POTs back in 2012 before it was as well known as it is now. Back when Dr's just thought I was some chick with anxiety. I was actively fainting and couldn't figure out what was happening. Why I share this is to say that I did get better being very methodical at progressing my standing tolerance, exercise tolerance, retraining my nervous system. My way probably isn't the way, but it worked for me.
All this to say that there's always the chance that recovery is in your future. My body is glitchy and I have to pay attention but I did get back to doing almost everything I previously could do. And the same could be true for you too.
Hello Paul. So glad to hear you are back at it trying to beat this beast. I am still at no energy but then again I was never one to do anything related to exercise. Walking is and always has been a mode of transportation for me, growing up in Germany. I still hope that if I could ever get a good 3-4 hours of sleep in at night I could move mountains. Anything that I take to make me sleep for that amount of hours I feel more exhausted when I get up.
Keep up the good work and don’t give up, you got it. I know you are doing a lot of research in regards to this so I probably won’t be able to give you any useful information you have not already considered or explored yourself. To tell you the truth I, for now, have given up finding a reason why I feel the way I do.
Oh yeah, reading the comments others left, this is another change I made. My original goal was to stay around 118lbs, well now I am glad if I keep up with 107…yes it explains the lack of energy but if I don’t feel well I can’t eat. And when I do, I keep on eating but I don’t gain any weight. I know some folks who have the opposite issue might not understand but by now I would be glad to put on some weight.
Huzzah!
YESSSSSS we need a win.
Early in my disability I was able to do this too! I blew it ONE TIME though...hiked up something I knew I shouldn't have...and I never did get recovered past it (years later). Stopping at 5k is wise for now!
Just between you and me and anyone following the comments… my second 5k run hit really hard, despite postponing it a bit. Might be a few days before I find out just how hard it hit.
Dammit. Ain't that just the way. It took me ages to realize the payback is 24-48 hours after, not immediately...
That delay varies with the form of exercise. If I overdo it with walking, the consequences hit while I’m still walking and stop me — which has been murder on hiking, but at least it was obvious.
But running … I dunno, maybe it’s the endorphins, but I often feel really great for a few hours after. But then I get the first warning signs by late in the day. The problem is is that I can then spend the next two days not knowing how high the price was, because it’s as much about how long it lasts as how intense it is. Many, many times I’ve thought, "This isn't bad, I’m okay, I got away with it!"
But then it JUST KEEPS GOING, and a week later I still feel truck-hit, and I’m no longer thinking I got away with it.
It's awesome and a testimony to your persistence!
Dear Paul, like you I used to be a very athletic, sporty person. I got sick 15 years ago and it has affected my ability to work, exercise, walk, even for a period of about 6 months I was too ill to eat properly and lost a worrying amount of weight. Roughly two years ago I got treatment for Mast Cell Activation syndrome and I am geting slowly better and can allow myself to hope again. It has been a hard, slow road because unlike the USA the medical profession here in England & Wales does not agree that MCAS exists, so within the NHS there is no treatment for it. Anyway I don't want to suggest something you’ve already tried (like you, I get masses of “have you tried X” suggestions!) , but have you been assessed/treated for MCAS. With best wishes for the future x
I'm not sure about Canada (where Paul lives), but medicos in the US also disagree as to whether MCAS exists.
Which is funny, since there are obviously all sorts of ways mast cells can activate dysfunctionally, specific instances of which (like asthma and allergies) are well accepted.
I was diagnosed with EDS, which often overlaps with MCAS, decades after I was diagnosed with allergies and asthma. To this day, US allergists disagree on whether, say, GI disturbance in reaction to airborne allergens is something they should acknowledge. Some do, but many are more into reassuring patients not to worry about such things (which is less-than-reassuring to the patients it happens to!).
I fit a typical MCAS gal profile ("Indeed, an MCAS patient’s history often will date back to a childhood of excessive 'colic,' 'allergies,' 'food intolerances,' dysmenorrhea/menorrhagia soon after menarche, and other inflammatory or allergic-type problems either incorrectly diagnosed as normal or dismissed as of unknown cause and insignificant." https://www.degruyterbrill.com/document/doi/10.1515/dx-2020-0005/html ). And, when I forget my Montelukast, prescribed for asthma, *everything* gets "mysteriously" worse :-) Still, I sense that the US doctors I have access to would find MCAS a redundant label for a patient who already has diagnosed allergies and asthma ("*of course* the patient has dysfunctional mast-cell activation – that's clear from the other labels, no need to humor the patient with *another* 'special' label!")
So I haven't sought treatment for MCAS as such, though I continue to hope that appropriate treatment of my asthma and allergies (which I'm already struggling to get) may also result in taming less-acknowledged mast-cell-mediated symptoms.
The "realness" of MCAS is endorsed by no less a skeptic that Dr. Steven Novella: "Mast Cell Activation Disorder is real, but there are a large number of fake diagnoses out there. How do you tell the difference?"
https://sciencebasedmedicine.org/mast-cell-activation-disorder-yes-its-real/
Always nice when a notorious "naysayer" says "yay" — you can trust it more!
Congrats Paul! Do you monitor HRV as a way to assess readiness for a challenge?
I have tried. HRV was one of the things I tracked during my particularly diligent "tracking all the things" phase, hoping it might be validated as a useful signal. Unfortunately, it was not: sometimes it harmonized with what was obviously going on, and other times it pointed exactly the wrong way.
My experience is that HRV doesn’t correlate very well with my overall state. Although it did predict an illness at least twice before I felt it coming on. Resting HR seems to correlate pretty well. reliably high when sick or fatigued from intense exercise.
I’ve heard similar from others, but have yet to see a clear pattern. Possible I have a measurement problem: I’m just using my Apple Watch's HRV estimate. I check on the data every now and then, either when I’ve got something notable going on subjectively (to see if it's reflected by an unusual HRV number), or I just check recent data to see if there are highs/lows that correlate with anything I can remember. It’s so noisy that I'll probably stop trying soon. But before giving up on HRV, I should try another way of measuring.
You probably need a chest strap for HRV. Marco is my trusted source on this topic. Alan Couzens too. https://marcoaltini.substack.com. https://alancouzens.substack.com
Yep, good idea. Worth a "try" in the spirit of "try everything," for sure! Just added it to the big list.
Hopefully the Apple Watch data isn't completely useless. I might fully expect it to be out of step with expectations on any one day, or just unable to pick up on a subtle vulnerability that I’m unsure of myself (e.g. an infection coming on).
But I would expect it to be able to at least show relative trends that correlate with fairly major multiday physiological events — and so far it hasn't even done that. So either HRV just isn't actually that good an indicator with me …or the Apple Watch is amazingly bad at measuring HRV … or perhaps a bit of both. 🙂
So, time to find out.
Paul, this is absolutely NOT a “have you tried…”, just something I’ve been musing about as a sedentary, out of shape, middle-aged dad: Based on the assumption that “any exercise is good exercise”, for a person who does serious workouts like yourself, would it be feasible/advisable to ‘top up’ those sessions with low-effort activities like, say, a walking pad, or one of those under-the-desk foot cycles? I’m not sure that’s even achievable during a period of exercise intolerance, but maybe for overweight normals like me?
Not every "have you tried" comment is objectional, but thank you for being careful about it. 🙂
"Topping up" is basically just more load during recovery, a concept probably best known as "active recovery." If you can tolerate it, great — it’s essentially just a way to keep that exercise ball rolling when you're still recovering from a more intense workout. But it’s not risk free, and even healthy people risk overdoing it with this strategy, not giving themselves enough time to recover … and if that's true for healthy people, it’s even more of a risk with exercise intolerance.
This is a topic I’ve written about for PainScience.com:
https://www.painscience.com/blog/should-you-exercise-when-youre-still-sore-from-the-last-workout.html
Thank you! A helpful reply and a handy reminder to always check the articles. The thing about Project Try Everything is that yes, you probably have tried it.
Certainly I have tried a LOT. But, amazingly, still quite far short of "everything." 🙂
That’s so cool, you must be thrilled. I love the adaptation of exertion level to the circumstances of the day; that was such a radical idea for me but it is the vital key to being able to have behavioural consistency in these contexts I have learned! And the need to limit any increase to a very slight 5% or so no matter how good the day - same here, and it still surprises me. My scale is all so much smaller (12-15 min walks, never running) but the principles match, and it’s reassuring to see! Woohoo!
I’ve talked to quite a few people over the years who have struggled with exactly the same principles, applying them to varying degrees of severity of exercise intolerance. The worse it is, the finickier it gets. The margins for error get so narrow, and the consequences of error so much worse, that it seems almost impossible: just too sick for anything a healthy person would recognize as "exercise."
And yet! I suspect the logic still applies: even if it’s very little, you fight to maintain whatever activity can possibly be maintained.
Or maybe you just say fuck it and let biology have its way with you and make sure you enjoy plenty of ice cream while you still can. 😜
This is such an inspirational post, thank you for sharing! Well done on the 5K! I’m currently suffering with what I think is bilateral gluteal tendinopathy but I haven’t had a scan to prove it. But the result is I can’t do Any cardio right now and your description of how you’ve done this is sort of how I’ve been contemplating any sort of recovery, with micro-esque increments, I can’t even manage 1 min now without a flare up! Anyway I’m very pleased for you! I suppose if you didn’t want to push further you could try a different form of cardio like a light row, or a short ruck for a short distance.
Re "different form of cardio" — that's actually also a part of how I got here, and the topic of the next post!
That easy flaring we call high "irritability," a distinct concept from how much something hurts: how easily it is triggered. And high irritability calls for a "let shit calm down" phase of rehab, where you maximally baby those hurty bits. I recently went through some super high irritability with my shoulder incident. Those phases feel like they are never going to end! But they do. Usually. 🙂
Kudos on your persistence AND discipline to increment so gradually.
I’ve experience what I think was post/long-COVID a couple of times and it was brutal… I could run 30 minutes and feel great, 45 minutes and feel tired but ok, but if I went over that, just 5 more minutes—even if I felt great during the run—I could count on an intense headache and fatigue precisely 4 hours later that might last days.
Thankfully, I think I’m past that (although, I also haven’t tried longer runs for some time now). I can point to a number of things I think helped (more frequent slower runs, more sleep, creatine or ketone supplementation, etc.), but it’s very likely to simply be an indeterminable time for full recovery to happen.
Here’s hoping you can maintain it for a good stretch!
You've definitely experienced "exercise intolerance" then! That reaction a few hours later … yep. Even when you feel great during, which always feels so UNFAIR, y'know?
And the only way to navigate that is a lot of painful experimentation.
Really happy to hear you got free of it. How long was that phase?