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instant flu-like symptoms instead of PEM

Messages
3
Hi,

everybody seems to be getting PEM multiple hours *after* activity or even the next day.

Well, I don't. I get "P"EM (flu-like symptoms) *instantly* for every moment I keep on going, increasingly.

If I was to ride a bike I'd start with almost 0% flu symptoms.

* Stage 1: I start getting dry mouth/sore throat.

* Stage 2 (maybe 2 minutes): I'd get a running nose and some ear problems.

* Stage 3 (after 3 minutes): I'd feel fever-ish and dizzy.

Now I'm at 100% flu symptoms and have to abort and rest.

During the next 15 minutes (lying down) the flu symptoms will continue to worsen.

Then, after about 30 minutes I'm slowly recovering and will stay at about 50% flu symptoms for the rest of the day, ~30% flu symptoms the following day and almost 0% two days after.

This has been going on for years and is 100% reproduceable. If I was to abort at Stage 1 or 2 it turns out basically the same but less severe.

Now the "timeout" for stage 1-3 somewhat varies on a per day basis. It might be longer for lucky days and as short as a few seconds when I'm at my lowest.

Flu-like symptoms emerge "real-time" as long as I keep going. But why?

Any help is appreciated!

Thanks!
 
Last edited:

Hajnalka

Senior Member
Messages
910
Location
Germany
Hi @fl11, my symptoms are always there, not just with PEM. I've got constantly this feverish flu-feeling you describe. It worsens with exertion, but it's always there. Sometimes I feel the worsening like you during the activity (too much reading/writing) and sometimes it hits later.
 
Messages
3
Thanks for your replies. I did not have orthostatic intolerance neither exercise intolerance on my radar yet and am looking into it.

Though I stumbled on "PENE" (Post-Exertional Neuroimmune Exhaustion) which might additionally apply to me.

Out of all the symptoms (join paint, ...) the flu-like symptoms are the worst. Maybe my immune system falls apart during activity because of depleted energy (ATP)?

Now PENE still got the "post-" in the name whereas I get it immediately during activity (might add this includes mental activity as well, e.g. a stressful telephone call).

I just can't wrap my head around the fact that you all could theoretically "enjoy" 15 minutes of any activity and "only" have to pay for it later in 1-2 days time.

Whereas I am getting punished immediately for every additional step I take.
 
Messages
2
When I was more severe I had real-time worsening flu-like symptoms + headache, like you describe, mainly from mental exertion but physical too (i.e. 1 minute of reading I would get a sore throat + headache, and this would progressively worsen as I kept reading until it became unbearable). I also got very bad regular PEM as well. I actually thought this was completely normal...

Edit: This was actually very useful, once I figured out what was going on. It allowed me to avoid PEM, as I knew that I would trigger PEM proper if my symptoms worsened beyond a particular point – although it wasn't always entirely reliable
 
Messages
86
Sounds like I was a few years ago. I would get fluey legs after any amount of walking, going up or downstairs, even walking too fast across my lounge floor. Since I have stabilised a bit, I only get severe flueyness when I have really overdone it, and then usually 24 to 48 hours later. I empathise as the flueyness is beyond awful and a symptom that very few people understand.
 

flitza

Senior Member
Messages
145
Hi,

everybody seems to be getting PEM multiple hours *after* activity or even the next day.

Well, I don't. I get "P"EM (flu-like symptoms) *instantly* for every moment I keep on going, increasingly.

If I was to ride a bike I'd start with almost 0% flu symptoms.

* Stage 1: I start getting dry mouth/sore throat.

* Stage 2 (maybe 2 minutes): I'd get a running nose and some ear problems.

* Stage 3 (after 3 minutes): I'd feel fever-ish and dizzy.

Now I'm at 100% flu symptoms and have to abort and rest.

During the next 15 minutes (lying down) the flu symptoms will continue to worsen.

Then, after about 30 minutes I'm slowly recovering and will stay at about 50% flu symptoms for the rest of the day, ~30% flu symptoms the following day and almost 0% two days after.

This has been going on for years and is 100% reproduceable. If I was to abort at Stage 1 or 2 it turns out basically the same but less severe.

Now the "timeout" for stage 1-3 somewhat varies on a per day basis. It might be longer for lucky days and as short as a few seconds when I'm at my lowest.

Flu-like symptoms emerge "real-time" as long as I keep going. But why?

Any help is appreciated!

Thanks!
I got something similar when I first started Equilibrant and still get more of it when I have upped the dose or when I recently started LDN. It may be that we get into a more active inflammatory state, fighting an indolent virus or infection at those times.