Why might exercise help me?

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Before I get hate, let me explain my journey.

I have CFS as a diagnosis of exclusion. Though, I certainly have not had all of the sensitive tests a lot of folks have had here, just basics.

I certainly get PEM, brain fog, (burning head, sinus congestion, anhedonia, psychosis)

HOWEVER, it's like a threshold. I got Covid, was bed-bound for 3 weeks. Now my PEM threshold is close to zero, a 10 minute walk- PEM.

Prior to Covid? My PEM wasn't triggered unless I was squatting heavy weight, but I could go for intense runs and weight lift.

It seems to go like this for me: I exercise, get PEM, I feel consistently worse every day, until I exercise again, and then I feel normal again for a few days.

If I don't exercise at all, I get worse quick.

It seems to work in a threshold that I must keep or I lose it fast.

Heavy leg-related exercises induce PEM, however, but martial arts for 2 hours leaves me feeling normal and euphoric, with little-to no crash-

So I sense it's related to energy systems, the same one that is responsible for the body deconditioning- just accelerated?

Is anyone else like this? I have to keep up activity or else I get worse, even with PEM, I can't get RID of PEM unless I do some sort of cardio-based exercise.
 
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I would also like to add, I had a viral onset, and part of this cause me to suffer hypoventilation syndrome- I had immense air hunger and I was hyperventilating 24-7, for two weeks or so.

Every now and then I will still get it- but I wonder if I did some permanent damage from that long stretch.

Fasting makes me feel almost normal some days, but not if I am already PEM'd
 
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And I did fine great relief from a supplement called C4, it contains some things like N-acetyl L-tyrosine which may have helped me.
 

Wishful

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Heavy leg-related exercises induce PEM, however, but martial arts for 2 hours leaves me feeling normal and euphoric, with little-to no crash-
While my PEM triggers were different, I was similar in that I could do some fairly strenuous activities, such as hours-long hikes or bike rides, without triggering PEM, yet some simple non-standard movements, such as washing one window or climbing a ladder once, would trigger PEM. I think it's a matter of whether an activity damages the muscles in a way that activates the immune system. I'm not sure how martial arts wouldn't damage muscles, but I'm not sure what sort of movements are actually involved. Maybe your leg-straining activities does more damage, or the cytokines reach the brain from there more easily.

I think there's a possibility that Covid or other infections can either remain to some degree and keep the immune system in a state that worsens ME, or maybe they pass completely, but still leave the immune system in an altered state. Something happened to me a couple of weeks ago that made me much more sensitive to high-protein foods (probably the tryptophan), and my most likely suspect is a viral infection that didn't cause any other noticeable symptoms. Maybe it was Covid. I'm going to try to find some elderberry product next trip into town, since I know that stimulates my immune system, so maybe it can shock my immune system out of it's present abnormal state.

If fasting seems to help, try some dietary experiments to see if you can identify something that makes you feel worse. If you always consume the same foods each day, it's hard to know whether they are making you feel worse than you otherwise would.
 
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While my PEM triggers were different, I was similar in that I could do some fairly strenuous activities, such as hours-long hikes or bike rides, without triggering PEM, yet some simple non-standard movements, such as washing one window or climbing a ladder once, would trigger PEM. I think it's a matter of whether an activity damages the muscles in a way that activates the immune system. I'm not sure how martial arts wouldn't damage muscles, but I'm not sure what sort of movements are actually involved. Maybe your leg-straining activities does more damage, or the cytokines reach the brain from there more easily.

I think there's a possibility that Covid or other infections can either remain to some degree and keep the immune system in a state that worsens ME, or maybe they pass completely, but still leave the immune system in an altered state. Something happened to me a couple of weeks ago that made me much more sensitive to high-protein foods (probably the tryptophan), and my most likely suspect is a viral infection that didn't cause any other noticeable symptoms. Maybe it was Covid. I'm going to try to find some elderberry product next trip into town, since I know that stimulates my immune system, so maybe it can shock my immune system out of it's present abnormal state.

If fasting seems to help, try some dietary experiments to see if you can identify something that makes you feel worse. If you always consume the same foods each day, it's hard to know whether they are making you feel worse than you otherwise would.
i was thinking that since legs are the largest muscle groups- something to do with the mechanism that’s triggered when muscles are broken down and rebuilt or become sore.

it was JiuJitsu, grappling, like wrestling, I wondered if maybe my blood is thick or something or doesn’t reach my brain properly unless I do some cardio based stuff haha

do you take any supplements? Was thinking if Curcumin
 
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While my PEM triggers were different, I was similar in that I could do some fairly strenuous activities, such as hours-long hikes or bike rides, without triggering PEM, yet some simple non-standard movements, such as washing one window or climbing a ladder once, would trigger PEM. I think it's a matter of whether an activity damages the muscles in a way that activates the immune system. I'm not sure how martial arts wouldn't damage muscles, but I'm not sure what sort of movements are actually involved. Maybe your leg-straining activities does more damage, or the cytokines reach the brain from there more easily.

I think there's a possibility that Covid or other infections can either remain to some degree and keep the immune system in a state that worsens ME, or maybe they pass completely, but still leave the immune system in an altered state. Something happened to me a couple of weeks ago that made me much more sensitive to high-protein foods (probably the tryptophan), and my most likely suspect is a viral infection that didn't cause any other noticeable symptoms. Maybe it was Covid. I'm going to try to find some elderberry product next trip into town, since I know that stimulates my immune system, so maybe it can shock my immune system out of it's present abnormal state.

If fasting seems to help, try some dietary experiments to see if you can identify something that makes you feel worse. If you always consume the same foods each day, it's hard to know whether they are making you feel worse than you otherwise would.
Also, yes! I could do strenuous exercise but then a car drive on a certain day it would trigger PEM, but just last week I could drive to airport and back (5hours) it’s so damn random.

I’m hoping I can work my way back to where I was pre-illness
 

ljimbo423

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It seems to go like this for me: I exercise, get PEM, I feel consistently worse every day, until I exercise again, and then I feel normal again for a few days.

If I don't exercise at all, I get worse quick.

It seems to work in a threshold that I must keep or I lose it fast.
I also feel much worse when I don't exercise. If I don't over-do-it and get PEM, I feel better for a few days, then it repeats. Even if I do get PEM, it only lasts 24 hours and I still feel better overall for a few days, than if I don't exercise.
 
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I also feel much worse when I don't exercise. If I don't over-do-it and get PEM, I feel better for a few days, then it repeats. Even if I do get PEM, it only lasts 24 hours and I still feel better overall for a few days, than if I don't exercise.
Exactly this! What’s your level of activity? My PEM seems to last 24-48 in rare cases, and it’s mostly in my head.

Feels like my ears are full and throbbing and I can’t do simple thinking tasks/cranky but I COULD lift heavy shit up steps with PEM
 

leokitten

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I certainly get PEM, brain fog, (burning head, sinus congestion, anhedonia, psychosis)
These seem like pretty unorthodox PEM symptoms? PEM is a worsening of some or all of your baseline ME symptoms, for me it feels like the volume is cranked up on all my symptoms that I feel pretty much all the time at a baseline level.
 

ljimbo423

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Exactly this! What’s your level of activity?
I'm a 6 on the activity scale used here at PR.

Feels like my ears are full and throbbing and I can’t do simple thinking tasks/cranky but I COULD lift heavy shit up steps with PEM
My PEM is just a worsening of fatigue, body aches and a mild headache.
 

xebex

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IMO everyones capacity for exercise is different. When i was mild, i couldn't do anything intense with my legs, as you describe - i was a BMX racer and my ability to do explosive bursts with my legs just disappeared over night, my calf muscles would cramp like crazy and they constantly ached, i would have sleep attacks at work and my head would feel like i couldn't hold it up and would be constantly exhausted but i could still exercise without it getting worse (just not the explosive exercise) - once i got over my loss of racing i found volleyball - it could be fairly intense but it was nothing like the explosive power i needed for BMX, i played that for a couple of years and my ME seemed to fade into the background, it was still there but very very mild.

Now 10 years later i cant exercise at all - but i try to move and be active as much as possibile . I need to lie down for 21 hours a day, and my movements and activity level consist of making meals and doing the dish washer. If I wanted to exercises i could possibly walk for 10minutes twice a day but as a result I wouldn't be able to homeschool my kid or make her meals. I think that when we have ME movement and activity within our limits is absolutely important, for our mental health and to try and keep ourselves functioning and not decondition, and everyone has different limits.
 
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These seem like pretty unorthodox PEM symptoms? PEM is a worsening of some or all of your baseline ME symptoms, for me it feels like the volume is cranked up on all my symptoms that I feel pretty much all the time at a baseline level.
Hey Leo! I’ve read a few time’s a lot of people get sinus related PEM

To clarify- my head feels like it’s burning, as if my my brain has been pumped up with a bicycle pump, I do get some heart rate challenges.

a “sick” feeling, like when you KNOW you’re coming down with something


my cognition is greatly reduced and I can only operate automatically- things I already know how to do without
 
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IMO everyones capacity for exercise is different. When i was mild, i couldn't do anything intense with my legs, as you describe - i was a BMX racer and my ability to do explosive bursts with my legs just disappeared over night, my calf muscles would cramp like crazy and they constantly ached, i would have sleep attacks at work and my head would feel like i couldn't hold it up and would be constantly exhausted but i could still exercise without it getting worse (just not the explosive exercise) - once i got over my loss of racing i found volleyball - it could be fairly intense but it was nothing like the explosive power i needed for BMX, i played that for a couple of years and my ME seemed to fade into the background, it was still there but very very mild.

Now 10 years later i cant exercise at all - but i try to move and be active as much as possibile . I need to lie down for 21 hours a day, and my movements and activity level consist of making meals and doing the dish washer. If I wanted to exercises i could possibly walk for 10minutes twice a day but as a result I wouldn't be able to homeschool my kid or make her meals. I think that when we have ME movement and activity within our limits is absolutely important, for our mental health and to try and keep ourselves functioning and not decondition, and everyone has different limits.
yes! The explosive movements! This seems to be a trigger as well, BUT sometimes if it triggers PEM the first time it won’t the second, it’s very strange.

what do you attribute your decline to?
 

xebex

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what do you attribute your decline to?
i was actually just talking about this in another active thread on here - basically "overtraining" but i wasn't really overtraining I was training no harder than the rest of the people on my team, infact one of them was an olympic athlete and was training much harder than me and she didn't get sick, BUT i was kept wake every nigth for 4 years by noisy and abusive neighbours and there was possibly hidden mold in my apartment (the other flats were covered in mold but mine seemed to have been treated before i bought it) plus my workplace was emotionally and physically toxic - it was a new build and i'm sure it was off gassing, then i had a vaccine and BANG two days later life changed forever.
 
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When you had ME and was playing playing volleyball- you had a decline again? Why do you believe that so?

Yes, I believe a lot of us have been burning the candle at both ends before symptoms, I always had panic and anxiety disorder, was my own business owner barely slept, and worked out intensively prior to being forcibly slow down
 

ljimbo423

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Yes, I believe a lot of us have been burning the candle at both ends before symptoms, I always had panic and anxiety disorder, was my own business owner barely slept, and worked out intensively prior to being forcibly slow down
Same here. Panic and anxiety disorder, as well as a VERY unhealthy/stressful lifestyle for years before I developed ME/CFS.
 

xebex

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When you had ME and was playing playing volleyball- you had a decline again? Why do you believe that so?
I played volleyball for 2 years without too much issue then moved to Canada, basically lived a normal life for about 6 years, ME was very mild, i would crash after an intense bike ride or intense amount of skiing i knew there was something wrong but i could basically live as normal. I even entered some downhill races and won one of them! But then 5 years ago i had a miscarriage, and i'm not sure if its related but i very slowly started to get worse, stated getting crazy sore throats and losing my voice, and then i wasn't recovering well after a weekend of teaching english online, it would take all day Monday to recovered form essentially just sitting in my room chatting to people online, then we renovated our house, and shortly after that I crashed into moderato/severe. I believe the stress of the reno combined with the off gassing of the new materials is what did it. However I do believe the initial insult was way back years before, and my immune system was just waiting for a hit to take me down.