Triggering PEM in mild CFS?

[panckage]

I find PEM hard to trigger and below is a discussion of that. My CFS is considered mild and 60 (or a bit less) on this scale: http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

The only repeatable PEM I have had is when feeling particularly good, going for a 20 min run. I attempted this twice. Both times my heart rate got to ~180. i felt great during and after. The next day was definitely a PEM crash and lasted for a few days and didn't really return to baseline. I've done this twice and both times I've had the same result.

The rest of my PEM instances I've had aren't repeatable. When I go on my exercise bike I get my heart to ~130bpm average (~160 max). This is usually ok, although may occasionally may trigger PEM.

Thoughts:
130bpm isn't normally doable. I need ritalin else I can only manage ~115bpm due to chronotropic imcompetence. Ritalin cures the CI as far as I can tell.

So my hypothesis is that while PEM usually isn't attainable, ritalin fixes the CI problem and allows my heart to beat fast enough to trigger PEM, which in my case seems to need quite a high bpm (~180)

Do other milds find a problem with triggering PEM consistently? Do you find that heart rate doesn't seem to have much predictive value in regards to PEM?

 

[Woolie]

@panckage, most of us have fluctuations in our response to exercise, which occur for reasons we don't fully understand. Sometimes, the consequences of activity are severe, other times less so. My sense is that physical activity is one factor that can alter the expression of the disease, but there are others too that are harder to track (e.g., infections, current immune activity not related to exercise). So overlaid on the activity-deficit pattern is another layer of variablity that we just don't understand.

Because your condition is very mild, its perfectly reasonable to expect mild PEM sometimes and no effect other times, depending upon these other factors.

I'm not dismissing your suffering, though. Every one of us here is struggling with limitations that we don't deserve to have, be they large or small. It all sucks, whatever the level of severity. Mild CFS is especially hard for folks like yourself, form whom physical fitness is an important part of life. It robs you of your sense of control over your body.

 

[meandthecat]

I guess I am mild, though the idea of this being mild is similar to a 'gentle' shark attack, and an HR of 120 and over for more than a minute is dangerous territory for me. Resting horizontal can head it off, carrying on will just make it inevitable and worse!

One oddness is that if I get up when I wake, 6am and get ready for work by 7, then use coffee to ride the cortisol wave, I can hold onto a full-time job and feel good.......till I stop. A lazy morning can finish me off. Like a shark I have to keep swimming, but not too hard.

If I stop then I stiffen and the pain can be outrageous when I move, or even when I don't. As I have recovered PEM has become less awful, less lengthy and quicker to come on, often over and done on the same day, with only mild weakness the following day. The horror of it lasting 3 weeks and it's severity are in the past,

 

[ryan31337]

Hi @panckage,

I've had prolonged remission periods (years), where I eventually reached about 85 on that scale (after initial illness @20). Unfortunately I wasn't tracking heart rate back then but during those times after gentle progression I could eventually swim and play sports pretty much at max capacity with very little PEM (assuming I was well rested to begin with). Activities that reliably gave me PEM for a few days involved back-to-back days of exercising or any intensive muscle building, so weightlifting, rock climbing etc. - thankfully I always bounced back though.

With a recent relapse back to approx 25 on that scale, just sitting at my desk, relaxed, for more than a hour would give me PEM. Now I'm around 40 on the scale and will get PEM from more than a few hours concentrating, travelling, overdoing housework etc.

My point being that heart rate doesn't seem to play a defining role in triggering PEM in me. I can see the point of trying to remain under an established HR @AT but I don't think it is something to obsess over. I know that I could keep my heart rate nice and low whilst lifting some dumbbells and still have the worst PEM tomorrow...

 

[Keela Too]

I think PEM should be avoided at all costs as it leads to a ratcheting downwards of physical and mental abilities. Caution should be the name of the game, and if sometimes you do less than the max you might have been able to do - then think of it as an investment for your future health.

Better to do less and feel well longer, than do more in the moment for short-term pleasure, and risk long term severe worsening. xx

 

[JaimeS]

I guess I am mild, though the idea of this being mild is similar to a 'gentle' shark attack

Haha! Ditto. And while I can (almost) work full-time and can go out and do things (gently... carefully...) I still get PEM pretty easily. I agree with @Keela Too regarding avoiding PEM. Sometimes I accidentally get there, but I don't go tempting fate.

One oddness is that if I get up when I wake, 6am and get ready for work by 7, then use coffee to ride the cortisol wave, I can hold onto a full-time job and feel good.......till I stop. A lazy morning can finish me off.

Yes! I went to Johns Hopkins and took their epidemiology seminar. I was excited and engaged, and I walked everywhere (in tiny bursts with plenty of stops, but STILL.) It's at times like these that I think, "I'm really almost well! I can do this!"

But once it was over and I let the adrenaline (or cortisol!) wear off, I melted into a puddle of goo.

This, or similar, has happened often enough that I do feel it's characteristic of my endocrine system.

It's also at times like these that you realize why some are still enamoured of GET. Superficially, it seems like if you just keep busy, you'll be okay.

But then I remember how I 'kept busy' for years of mild illness and slid slowly but inexorably downhill until I had moderate/acute symptoms. It's just not tenable to keep doing it. Society and 'common sense' told me that I should just keep pushing (because the alternative is... what?) until I was a puddle of goo on a semi-permanent basis.

PEM has become less awful, less lengthy and quicker to come on, often over and done on the same day, with only mild weakness the following day.

Here's where we're different, though. My PEM has become slower to come on as I've improved. I used to get it immediately after overdoing it, and now it's typically the next day. Though now I can experience a few hours of it before dragging myself upright again, rather than days.

PEM is one of the great mysteries of this illness. The way different people experience it is surreal.

-J

 

[Mij]

There is no such thing as "mild" CFS, the pathology is still THERE and if you continue to push yourself you will end up worse.

 

[RyeRyeBread]

I consider myself to be in the “mild” territory right now, but geeeez I cannot fathom running that long, or at all for that matter 😂😭
My HR goes to 117-120 when I’m standing/walking, and ups to 135-145 while moving up stairs or with a little more pep (or for longer periods), and that tuckers me out..

Guess I’m a little more moderate than I thought 😅

When I had bigger crashes, I do belief my HR was a tell, and did have to do with it. But I think it varies quite a bit as well 😕

 

[hapl808]

I'm more on the severe end of the scale so pretty much anything crashes me now, but 10+ years ago your description of mild is similar. I've tried to track heart rate lately with a Garmin. High heart rate can crash me, but I also crash without a high heart rate. My HRV correlates with PEM, but can't really predict it. That's probably not much help.