What are your PEM/Crash triggers? - Poll

[hamsterman]

I couldnt find this poll here, so I figured I'd add it. Please let me know if I need to change the wording or add anything.

 

[Bansaw]

For me, now, aerobic does not trigger PEM.
But "using a muscle group I've not used in a while does".
So maybe you could expand your poll items to differentiate:
- Aerobic exertion
- Muscle exertion

 

[TigerLilea]

Mine is physical exertion, but not with minor activity so I couldn't answer your poll.

 

[hamsterman]

I couldnt find a way to edit the answers. But I added 'Specific Muscle Group Exertion' so hopefully that will be useful.

 

[Deltrus]

That is cool that specifically social engagement is very commonly a trigger. In the future, I would be very interested to find out answers for why this is!

 

[Dichotohmy]

Its all of the above choices for me.

PEM really is like an energy depletion state for me, and there are a lot of ways to deplete one's battery, or spoons if you prefer. All of my symptoms revolve around an inadequate ability to recharge and PEM is always the result when I reach a sufficient state of energy discharge - be it from any imaginable physical or mental expenditure.

 

[hamsterman]

That is cool that specifically social engagement is very commonly a trigger. In the future, I would be very interested to find out answers for why this is!

Yes, I wasn't aware it was so common. This is a shocker for me. It's definitely the most concerning to me, since I am having a very tough time trying to control it, and it always takes me out 3 days at a time. (not to mention, I am suffering from it at this moment).

 

[AndyPR]

Social engagement is mental concentration for me. I have to concentrate to follow what other people say, what it means, then what my response is/should be, and then try to find the words to express myself. Also I find that I am very easily distracted if there is other noise/activity taking place nearby, so I might need to concentrate to filter that out as well. So, it doesn't surprise me but then I've always rated my brain fog as impacting far more on me than my fatigue.

Having a career in sales used to be quite challenging, as I'm sure you can imagine

 

[rosie26]

I seem to be really badly affected when it comes to social engagement. I was with a bunch of ME's a year ago and I was unable to follow the conversation after a half hour. If I don't have to concentrate hard I could last a bit longer. I run out of mental energy quickly and then everyone's talking becomes one to me. It's a clashing of sound and it hurts my brain. I feel pain, everything is loud and I can no longer tolerate being there.

I like to garden but I found from repeated experience that the muscles used while squatting triggers quite severe PEM for me. I don't know what it is about the muscles there that trigger such a nasty PEM. The other big one is digging the garden - really have to avoid this one, it really is a bad one for me. These two have given me some of the worst PEM's repeatedly over the years.

I ticked all boxes in the poll.

 

[ScottTriGuy]

I only experience physical exertion induced PEM, not cognitive nor emotional.

I will also experience PEM if I use my arms - it doesn't even have to be heavy stuff, which would obviously cause PEM due to effort to lift / carry - but also reaching above my head for multiple items off a shelf will cause almost immediate malaise.

Though, I'm not sure if that's because there is extra exertion to push blood up my arms or if there is something wrong with my actual arm muscles.

 

[hamsterman]

I seem to be really badly affected when it comes to social engagement. I was with a bunch of ME's a year ago and I was unable to follow the conversation after a half hour. If I don't have to concentrate hard I could last a bit longer. I run out of mental energy quickly and then everyone's talking becomes one to me. It's a clashing of sound and it hurts my brain. I feel pain, everything is loud and I can no longer tolerate being there.

I don't seem to get PEM from concentration or from loud talking or noise... but plain-old conversation gets to me. I went to my mom's for a quiet visit, it was very calm and peaceful... but I got in a conversation with her for over an hour... and boom... PEM that I am sill suffering from

But previously in the week, I visited my Dad and brother in a bar. It was loud, and they monopolized the conversation... but since I did very little of the talking... there was no PEM at all. With my dad and my brother... its more like I'm watching a movie, rather than engaging in a conversation... so it doesn't seem to affect me.

 

[Mij]

I will also experience PEM if I use my arms - it doesn't even have to be heavy stuff, which would obviously cause PEM due to effort to lift / carry - but also reaching above my head for multiple items off a shelf will cause almost immediate malaise.

This sounds like OI. I get this too. I also have the same issue when I tilt my head back to look up, like cleaning my bathroom vent for example. I need to lie down right after.

 

[Mij]

I get both physical and mental PEM, but the mental PEM started years after the onset of M.E.

 

[ScottTriGuy]

I get both physical and mental PEM, but the mental PEM started years after the onset of M.E.

Yikes.

I didn't think of that.

 

[Mij]

@ScottTriGuy to put it into perspective, I'm not so sure the mental fatigue would have started if I didn't do aerobic (yes running) during the time I started improving. I'm 90% sure of this. It was a big mistake.

 

[erin]

Social engagement and conversation. I am Ok online social engagement as long as I am in control and I dictate it. But real life conversation is terrible trigger for me.

 

[TiredSam]

I only experience physical exertion induced PEM, not cognitive nor emotional.

I will also experience PEM if I use my arms - it doesn't even have to be heavy stuff, which would obviously cause PEM due to effort to lift / carry - but also reaching above my head for multiple items off a shelf will cause almost immediate malaise.

Me too exactly. Only physical, and moving my arms about, even if it's only to try on a few clothes in a shop, or try playing the piano again, or doing stuff in the kitchen.

 

[rosie26]

I only experience physical exertion induced PEM, not cognitive nor emotional.

I will also experience PEM if I use my arms - it doesn't even have to be heavy stuff, which would obviously cause PEM due to effort to lift / carry - but also reaching above my head for multiple items off a shelf will cause almost immediate malaise.

Though, I'm not sure if that's because there is extra exertion to push blood up my arms or if there is something wrong with my actual arm muscles.

I now have a shopping trolley and put my handbag in it. Wish I had bought one years ago. I still have to pull it along but it's still much better than carrying something. I really feel it when I am hanging washing out on the line. Putting the arms up above the head and looking up - pretty much an instant affect on the ME.

 

[Mel9]

@ScottTriGuy to put it into perspective, I'm not so sure the mental fatigue would have started if I didn't do aerobic (yes running) during the time I started improving. I'm 90% sure of this. It was a big mistake.

Thanks @Mij your story is a very good warning to those of us who may feel we are starting to recover

 

[hamsterman]

to put it into perspective, I'm not so sure the mental fatigue would have started if I didn't do aerobic (yes running) during the time I started improving. I'm 90% sure of this. It was a big mistake.

That may be the case for me too. The social fatigue came later... and I also think it was a reaction to my overall baseline going lower after a series of 'pushing and crashing' far too much... mostly just because I hadnt figured out what was happening.