Anyone barely experience PEM at all?

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I have all the secondary symptoms of CFS, namely unrefreshing sleep every day for over a year, all-day tiredness, trouble falling asleep, frequent sore throats, objective upper GI inflammation, and chronic pressure headache.

But I can keep up with my friends on a 2 hour hike, or go for occasional bike rides, without any obvious worsening of symptoms, and never any muscle pain. It's the one thing that makes me doubt having CFS, although even my PCP suspects I have it.

I've also never really had a "crash", although I do sort of get an "over-tired" uncomfortable wired feeling if I stay up too late or mentally exert too long. But I've always had this since I was a kid, long before CFS symptoms appeared. (Although, I did get frequent URT infections my whole life, which I guess is associated with CFS).

Due to my apparent tolerance of exercise, I tried exercising 1hr every day for a couple weeks, but it seemed to just cause a very gradual decrease in my mental energy.

I suspected sleep apnea for a long time (despite being young and skinny), and did register an AHI of 6 on an overnight sleep study, but CPAP just gave me horrible headaches, despite adjusting the mask and pressure. Also tried a oral appliance, but didn't improve any of my symptoms.

Did others experience a similar tolerance for exercise when they were mild?
 

Rvanson

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No PEM no CFS/ME, it's called idiopathic chronic fatigue. But sometimes PEM can be subtle and one day after accumulated fatigue there's a crash.
If you're overweight weight loss is the easiest treatment of sleep apnea.
As far as I am concerned, calling ME/CFS " Idiopathic" is the same as saying " it's all in our heads". Funny that, as went from a normal to a ME/CFS patient in five hours, after consuming what I believe was contaminated food.
 
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I had really bad PEM before the Joshua Leisk protocol. Now it's either extremely mild or I don't get any until a certain point at which it will very gradually return.

But I'm currently in a post vaccine dip which hasn't abated yet. Although I had stopped taking full dose oat bran as an experiment to try and see if my prolactin levels went down. This was probably a bad idea because it means I need to clear down various viruses again which the oat bran will hit.

Anyway to answer your question I did have bad PEM on exertion of almost any kind. Now I can't go out for a 40 minute walk 3x a week but I did do an exercise tolerance test last week. This consisted of a ten minute walk which brought on tiredness and a crashing set of symptoms but they only lasted about 2 hours and then I was recovered.

Sadly in the last 7 days I've somehow lost all the strength I had and I've got a bladder infection of some sort (mild). But also suffering from headaches and some lymph node pain. Plus the oat bran is causing me to feel sleepy. So I'm not well with possible reactivations. Otherwise I'd be PEM free.

What I'm noticing is it will wax and wane now depending on some biomarker for immune strength and I have no idea which one.
 

nerd

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I have improved my PEM susceptibility/score a lot over the recent months. Of course, I can't tell why because I've done too many changes and tried various therapies. It might be the ketogenic diet combined with antivirals, it might be the azithromycin, or some of the many supplements.

When I previously would always feel wrecked, with headache, sore throat, desorientation, maxed out air hunger, POTS, tachycardia, I know only experience mild and short symptoms. I still need a lot of sleep and feel fever without fever during the sleep.

It's the "official" denomination. Idiopathic doesn't mean without cause but with without KNOWN cause.
But practically, it's often used synonymous to "without positive biomarkers" or "seronegative".
 

Hip

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What about mental exertion, @bob800, like concentrating on a difficult task, reading, taking to people for several hours, etc. Does that cause any repercussions the next day?

PEM is defined as not just the worsening of ME/CFS symptoms from physical exertion, but also from mental exertion.

In my case, I am more sensitive to mental exertion than physical. A few hours socializing and talking to people causes me to get increased brain fog, tiredness and almost a mental numbness for the next day or two.
 

hapl808

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What about mental exertion, @bob800, like concentrating on a difficult task, reading, taking to people for several hours, etc. Does that cause any repercussions the next day?

PEM is defined as not just the worsening of ME/CFS symptoms from physical exertion, but also from mental exertion.

In my case, I am more sensitive to mental exertion than physical. A few hours socializing and talking to people causes me to get increased brain fog, tiredness and almost a mental numbness for the next day or two.
I think I've commented on this before - I have a lot of muscular problems so I can't really do anything physical anyways (I think it's part of my severe status, but also could be some connective tissue problems - no idea). But any mental activity gives me maybe 1-4 days of brain fog, nauseous exhaustion, migraines, burning acid reflux, etc.
 

Wishful

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I wasn't aware of PEM in my first few years of ME (I didn't know about ME either). It may have been 5 years later that I noticed that really long bikes consistently made me feel worse the next day (consistent 24 hr delay). A few years more passed before I checked the Canadian criteria for ME rather than the confusing Fukuda list, and then realized that I was getting PEM. 20 km rides were PEM-free, but the 40 km rides would trigger it. Other relatively minor activities, such as climbing a ladder just once, or washing one window, would trigger PEM, so it seemed to depend on how abnormal the muscle exertion was. I believe that it was the immune response to muscle damage (microtears) that triggered PEM. Later I realized that I also triggered on cerebral activities, with a shorter and less consistent delay.

Cumin blocked my physically-induced PEM completely, and after 2 years of that, I stopped having PEM completely. Being PEM-free does not mean that I no longer have ME; just that I've successfully cured one symptom. I don't think it's unreasonable for some people with ME to have minimal PEM symptoms or to not trigger on all the same triggers that other people have. Some people will trigger after a 5 minute walk, while others might need a 5 hour hike in hilly terrain before triggering.

Hmmm, maybe I didn't cure my PEM, but rather increased the triggering level to something I haven't reached yet, like a 200 km bike ride.
 

junkcrap50

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PEM can present in different ways, according to people's experiences I've read on here and elsewhere. Even though malaise is the symptom in the name, I've seen people describe that their PEM presents as insomnia and GI problems. But I've never experienced something such as that. Malaise is my most common symptom.
 

Emmarose47

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My experience of CFS is on a continuum so if I look back to 3 yrs ago I was working 30hrs a wk as a psych nurse running teams of people with huge responsibility. Would cycle to work , hike at wkends , have hobbies etc but would have an overall tiredness and throat , ear , stomach , headache issues .
I'd be running around but exhausted . adrenaline fuelled and brain tired .
When in I stopped nursing ( for other reasons and took I'll health retirement that's when I gave more time to myself and took lots of rest . As time has gone on CFS was diagnosed and there has been a steady and consistent decline . A year ago I became severe and have been pretty much homebound since .
I see it as the past ' catching up with me '
It's been in the stopping my brain and body said ' were done ' ...

If I had my time again I would have slowed down much much sooner but I couldn't it seems . Hindsight is a sour teacher for a lot of CFS sufferers I hear .

What seems best is where ever we are with diagnosis or not ... Something else or not ...
Taking big doses of self care and rest are so important .
If there is all day tiredness what would be the kind things to do for that ?
 
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Hey Emma,

Sorry to hear how bad you are now. That's truly not nice!

I think it's easy to beat ourselves up but truth is meant of us almost all of us have to keep going for some reason. Probably most likely financial. It's bad that we can't just stop and recouperate. Maybe if that was financially and socially and culturally possibly we might all be in better places.

I guess what I'm trying to say is give yourself a pat on the back. You did great getting to where you got to and through no fault of your own. I think we all just hope and pray we can get through the next few years. But often it's a bit futile.

I read about a guy the other day on Cort Johnson's blog who had been in remission for a very long time. Over ten years. He got the covid vaccines and he relapsed hard and has not recovered months later. Went from active and working full time to bedbound.

It's terrible what this disease does to us. But I think we have to remember to be kind to ourselves. We're sick after all and we didn't ask for this nor did we do anything to deserve it. Even if my ex gf certainly made me feel like it was my fault! When I first had PVFS.
 
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I never had tolerance for exercise and I have been mild for years, I was moderate for 2 but managed to claw back to mild.

I had a very brief quasi remission where I tolerated running for 10 minutes twice a week, but a general anesthetic in hospital put all that to bed.