How do you classify your PEM? How does your PEM behave? How has it changed over time?

[Rebecca under the papyrus]

PEM will hit when I go over a certain threashold. I will wake up with it the next morning. 2-3 days of maximal demolition, where I am basically bedbound (I'm low moderate normally), have a lot of muscle pain and more sound sensitivity, then 2-3 weeks to get back to baseline.
Like your crash-flare distinction I wonder wether in those 2-3 weeks the PEM mechanism is still at work or wether I am "only" recovering from it.

When I was mild, the whole PEM-complex would only last 2-3 days.

Just like you when I did a little too much, but didn't cross the threashold, I will also be more fatigued and have muscle pain, but in severity not comparable with actual PEM. This sets in right during the exertion and lasts an hour to a few days, depending on the amount of "exercise".

Another type of flare is during and after immune activation. Severity and length here are in proportion to the amount of activation (days and housebound for a cold, 2 months and bedbound in the beginning for the Covid vaccine).

And I don't think that I ever had PEM from mental exercise. I have brain fog, and am easiliy exhausted mentally and emotionally, even for days, but haven't yet gotten anything PEM-like from it.

 

[hapl808]

Ugh, the constant PEM crashes from any mental exertion are frustrating. Constant tachycardia and reflux as well, although the reflux is more a symptom of my PEM and the tachycardia is pretty constant at this point. Sitting at my desk now and relaxing and aimlessly surfing the net, with my watch constantly warning me that my pulse is over 120. Yeah, I know.

 

[Nord Wolf]

I have not been ill with any virus or bacteria in a while. However, the last times I was ill it caused severe PEM for 6-10 weeks from time of infection. As if being ill isn’t bad enough…

In 2015 I had a surgery and I was put under. Afterward it took me 6 months to recover! I couldn’t figure it out and my docs at the time (no longer work with any of them) had no ideas.

Earlier this year I had some minor dental work done. They used a local anesthetic. It was a mid afternoon appointment. By morning I was in severe PEM and had no idea why. It lasted three weeks.

My primary care doc suggested it (and the reaction after the surgery years back) might have been caused by the anesthetic. Further research had discovered sites talking about the possible dangers of anesthetics to people with ME/CFS. This made perfect sense. I couldn’t say why/what happens in some folks with ME/CFS when given anesthesia, but I can certainly detail my own experiences of the aftermath.

Since then I was given a medical anesthesia warning card to carry and the warming was placed in my main medical files. Today if I need anesthesia I resort to acupuncture.

 

[Pyrrhus]

Further research had discovered sites talking about the possible dangers of anesthetics to people with ME/CFS. This made perfect sense. I couldn’t say why/what happens in some folks with ME/CFS when given anesthesia, but I can certainly detail my own experiences of the aftermath.

You may be interested in this:

Reaction to local anaesthetic
https://forums.phoenixrising.me/threads/reaction-to-local-anaesthetic.53282/page-2#post-2382474

 

[Nord Wolf]

You may be interested in this:

Reaction to local anaesthetic

Thanks. Yes I found this a while back.

 

[Rufous McKinney]

Today if I need anesthesia I resort to acupuncture.

you a red head? they have different pain genes....

 

[Nord Wolf]

you a red head? they have different pain genes....

No I'm not a red head. I'm also not allergic to the pain, just the anesthetics And acupuncture works as a nerve block to mimic anesthesia. One just has to find a trained acupuncturist who knows how to use it as such,

 

[Emmarose47]

My PEM.had become more irratic...
I can get stable ish and convinced I can do a little more and then bam ...
When I'm floored in crash I can get a good day . For example yesturday I woke with adrenalin rush and awake like I was normal then by later morning I'm gone again . It used to be I'd crash few days out and boom I was back ..
So long story short I'm all over the shop but can gain ground it just takes wks .
Maybe I need to accept when I get stable I keep in my energy envelope and keep living that way ..somehow though I don't think I can accept it and so yep the whole cycle will.continue ( if I'm lucky ... I may not be one day and will lose the function I have then I'll be sorry ....

 

[Rufous McKinney]

I just had a really intense PEM event...after being really sick with "other stuff" /stomach related....its three weeks later and I simply felt OK enough to stand in the kitchen some, do a few small house keeping tasks. But somehow it was just too many small things added together.

Rather than continue to feel a bit better recovering, it was the worst PEM ever. I literally could not see or stand or think and literally had to just throw in the towel 100%.

I think I've got to sit up and move around some because my back gives me grief, fully laid up.

Anyway, it was awful PEM but fully giving in and giving up did seem to really help get thru it.

 

[Rufous McKinney]

Maybe I need to accept when I get stable I keep in my energy envelope

its so hard darn it. I really swore I wasn't overdoing and there I was the next day: baked Alaska (photo posted elsewhere)...layers and layers of baked, and burnt meringue.

eyes glued shut. just ...awful the poisoning. But the totally give up (I decided the a symphony was too stimulating and reverted to 527 or 428.

 

[Rufous McKinney]

awful the poisoning. But the totally give up (I decided the a symphony was too stimulating and reverted to 527 or 428.

oh well that incomplete sentence was attempting to say: I listened to a sound healing tape and went out for almost two hours...and did extra nothing all evening.

I'm far better rested than normal on Day 2 of a bad crash. So that big rest was super helpful.

But the message seems to still be: do almost nothing, and keep at this nothing.

 

[vision blue]

Mine have changed alot and i dont know how to think about it.

When i first got sick, the lag depended on how much exertion there was. If it was a small anout, then fairly quickly, within 4 hours of event, id crash.the faster the onset, the less time i was bed bound. So in beginning i coukd get up
After just 3 hours of being unable to move for any reason

But then the crashes started lasting 3 days The more i did, the longer lag til it hit. And the longer lag correlated with lnger time veing compketely non functional and feeling horrible. I remember thinking, as i was lying down “I need to lie down”! The exhaustion feeling was constant

Now discrete onset and offset of crashes are less. But not in a good way. So not sure how to thonk about this (and for first time cog stuff doing it.) so lets so i have to do something unexpected for my computer- like have to put on software asap or have to fill out a form on a wevsite. I get really jittery and when im done even if it onky took 20 minutes i cannot do anything ekse on my to do list. I feel so overwhelmed and drained at the same time i have to get very still nothing is getting done know because the spacing between these events is getting bigger and bigger. I feel immon the threshold of not being able to do the things one needs to stay alive in a modern society- alot of computer stuff

Rushing is the worst. Deadlines etc. the having to do sonethibg today. Like i said i cant keep up. Even if very pressing i just CANT do it. So maybe i should post in the thread on how stable are you.

I guess thats too far from a pen crash but i do t now how to thing about it. The amount i can do is less and less- evennas noradreniline is higher.
If i do t shut done- turn off ringers abd not even critical tasks and make sure have no further contact withvworkd or stumlatiin or accomplishing tasks feels like i will- i dont know - break? Explode?

 

[Rufous McKinney]

If i do t shut done- turn off ringers abd not even critical tasks and make sure have no further contact withvworkd or stumlatiin or accomplishing tasks feels like i will- i dont know - break? Explode?

really similar here, and lately.

Today I simply came to (others call it waking up) covered in anxiety. And I can't tolerate a molecules worth of anxiety. Its like one of the poisons.

I'm dropping things alot. too. Lately. EGAD

 

[Rufous McKinney]

I guess thats too far from a pen crash but i do t now how to thing about it. The amount i can do is less and less- evennas noradreniline is higher.

lately I"ve decided that my "Being Up" as in upright all day with out a lay down and give it all up session: that is clearly not working at the moment. So I have to GIVE IT Up...consistently. I"m going to try THAT method and see if I can stop Dropping things.