What's your first/last sign of PEM?

[hapl808]

Ironically, I think my best sign of oncoming PEM is feeling good, especially if I'm getting PEM from something physical.

Yep, whether it's physical or mental, if it's stimulating enough to make me feel good, I've learned that a crash within 24-48 hours is pretty likely.

 

[vision blue]

I haven't paid enough attention to this, clearly.

Ironically, I think my best sign of oncoming PEM is feeling good, especially if I'm getting PEM from something physical. If I do enough stuff to get an emotional boost- yippee, I got something done! that is enough to put me in PEM. Any day that I go to bed happy that I have accomplished something, I know I will wake up feeling just awful the next day. It's hard to say how I know it's going away. I never feel normal anymore, just less impaired some days and lately I've been in a constant crash anyway. Can't remember what not crashed feels like, so not sure if I'm just getting worse or just can't dig myself out of the crash, since I do need to eat and bathe every once in a while.

Sure makes it hard to avoid.

So if we propose that at least for some pf us, an abnormal adreniline burst (in part to allow us to do what our bodies cannot, ) I am then curious to know if those on beta andrenergic blockers experience the sane delayed PEM crash. Anyone? I know blocking just beta Receptors still leaves other receptors but still interesting as a starting point

i gave up bathing by the way. So it is possible. Not eating tho...hungrier than ever. I think my body thinks it is starving. Maybe cant use the nutrients for fuel.

 

[vision blue]

Nothing very solid. My guess is neurotransmitter related as that would explain why it happens after mental activity as well as physical activity, and many neurotransmitters are in the gut. So potentially improperly regulated dopamine-glutamate-GABA? But that's not particularly actionable. I've tried all kinds of supplements that should work on either neurotransmitters or directly on reflux, and haven't gotten reliable results.

Makes sense. Good hypothesis. Serotonin too in both places. I suppose another possibility is energy is diverted away from digestion to essential body repair after depleting energy we dont have

 

[wabi-sabi]

So if we propose that at least for some pf us, an abnormal adreniline burst (in part to allow us to do what our bodies cannot, )

I very much think I experience this, both in short term like trying to cook a meal and in long term. Taking care of the OI helps a bit. I'm guessing this may be where the tired and wired feeling comes from, since if I am careful not to overdo as much , I get less tired and wired.

 

[Rufous McKinney]

I never feel normal anymore, just less impaired some days and lately I've been in a constant crash anyway.

feel very similar here. My husband noticed how much I enjoyed my errand field trip, he drove. He observed how I was OK.

And then the next day.....its horrible. And no way did I predict that. No, I"m sure I'm fine. (the delusion of fineness)

For me crashed is, however different and intensely worse, usually with digestive issues go sideways rapidly.

But not crashed is still not very functional.

 

[hapl808]

So if we propose that at least for some pf us, an abnormal adreniline burst (in part to allow us to do what our bodies cannot, ) I am then curious to know if those on beta andrenergic blockers experience the sane delayed PEM crash. Anyone? I know blocking just beta Receptors still leaves other receptors but still interesting as a starting point

I've had this for years, even 10+ years ago when I was more mild-moderate. I noticed, for instance, that the amount of sleep I got before a job didn't affect me at all - because when I was working, I would function purely on adrenaline. When the work day ended, though, I would first get the adrenaline crash (shaky, nauseous, etc), and then the next day(s) PEM. I never understood it, and really still don't.

I've been interested in beta blockers but seems like many people here have tried them and usually doesn't have a big impact on their ME/CFS but usually for their other symptoms like POTS? Closest I've done I guess is taking hawthorne but didn't notice much. I have pretty much constant low grade tachycardia.

 

[Woof!]

Another sign I'm on the edge of triggering PEM: a feeling of compression in my chest where the act of breathing switches from relaxed and natural to harder to do. I get light-headed and dizzy as a result and need to sit down.

 

[Woof!]

when I was working, I would function purely on adrenaline. When the work day ended, though, I would first get the adrenaline crash (shaky, nauseous, etc), and then the next day(s) PEM. I never understood it, and really still don't.

Tapping and depleting adrenaline stores is something I know well.

I think the difference between a life pre-ME/CFS (when adrenaline stores were only tapped when something big occurred, such as when my horse slipped in the mud and fell on me) and present life with ME/CFS (when adrenaline stores are tapped to accomplish mundane tasks, such as washing dishes or helping other volunteers do light tasks at a local non-profit) is how often (and for what) adrenaline stores are tapped.

 

[Zebra]

Hi, @TracyD

I want to thank you for posing these questions and I also want to thank all those who have responded thus far.

Your post is the nudge I need to be more mindful about warning signs on both ends of the crash, that is, going into it and coming out of it.

I am much better about pacing than I used to be, but I appreciate the nudge to look a little deeper and be more observant.

And, everyone's responses thus far have given me ideas about possible early manifestations of PEM. VERY helpful!

 

[TracyD]

I am much better about pacing than I used to be, but I appreciate the nudge to look a little deeper and be more observant.

And, everyone's responses thus far have given me ideas about possible early manifestations of PEM. VERY helpful!

I'm in the same boat. Somehow this question had never occurred to me before.

Pacing, pills, and breathing exercises have reduced my PEM symptoms in number and severity. Like @Woof!, I used to have greater difficulty breathing (to be specific: expanding my chest/diaphragm to breathe) as an early and late sign of PEM.