LOOKING BACK, when did your first PEM occur?? What was going on? Did something PROCEED it happening?

[grapes]

My first PEM crash occurred 4-5 months after I had detoxed two high heavy metals for 6 months. I NEVER had PEM before that detox. That detox was constant unrelenting fatigue and clearly stressful to my body. When the detox ended, the fatigue greatly lessened. But 4 months later, I had serious candida, and that is when the initial PEM started (after sightseeing).

I crashed terribly later that year while lifting and rearranging heavy rocks in my garden---PEM for over a week. Then the next year, when lifting heavy boxes from one side of a room to the other. PEM for me comes suddenly, like dropping a heavy rock off the roof and staying on the ground for days. Another time, I had it after doing housework for a sick friend. There are more examples.

And most of the time, they seem to occur when my body is already stressed and I do activity on top of that stress.

I also wonder about genetics. Some of mine below my name.

 

[Wishful]

Long before I knew about PEM or even ME, I noticed that sometimes I'd feel a bit more energetic than usual and go for a long (40 km on hilly gravel roads) bike ride, and then my 'illness" symptoms would be worse than usual the next day. I can't remember it happening from other physical activities, but they probably did, but I just wrote it off as a random bad day. Since it was so long ago, I don't recall any particular event that might have preceded developing PEM. I can say that there was no detoxing involved.

 

[grapes]

Long before I knew about PEM or even ME, I noticed that sometimes I'd feel a bit more energetic than usual and go for a long (40 km on hilly gravel roads) bike ride, and then my 'illness" symptoms would be worse than usual the next day. I can't remember it happening from other physical activities, but they probably did, but I just wrote it off as a random bad day. Since it was so long ago, I don't recall any particular event that might have preceded developing PEM. I can say that there was no detoxing involved.

What I wonder about is if many of us had some kind of biological stress going on with our bodies (even if we didn't recognize it), and putting exercise or activity on top of the stress that was already there is what crashes us with PEM.

 

[Wishful]

Well, if you're asking about stress that none of us recognized at the time, it'll be kind of hard to get positive responses.

I certainly don't remember any significant changes in my life prior to developing ME. I was living a pretty low-stress life at the time. I think it was just an age thing: at 39, some biological activity dropped to the point where my cells were able to get locked into the ME state once triggered by immune activation, whereas before that, my cells were able to switch back to the normal state as they were supposed to.

As for PEM, I think my physically-induced PEM is triggered by immune activation (by damaged muscle cells), involving IFN-g. I have no good theories about what triggers my cerebrally-induced PEM, but it seems to be different.

 

[MariaMagdalena]

My PEM goes back to childhood. I lived with my mother who was a pretty sedentary introvert so I did okay there and was pretty active when I could set my own pace. I had to visit my father and stepmonster who were extroverted recreationalists. They were also very abusive. When I was forced to visit them every other weekend they would force me into heavy activity like skiing, camping, motorcycle riding and much various kinds of abuse.

Routinely after coming home Sunday night I would miss Monday and Tuesday school and be in bed or on the couch for 2 days with what I now know was PEM, but at the time was "I just don't feel good".

Once I grew up enough to not have to go over there and I got to live my life the way I wanted I stopped having PEM for many years. I did have lots of acute illnesses (bronchitis, toncillitis) those years though and it would take me much longer to recover than normal people.

The PEM came back when I was in nursing school around the same time as I came down with Hashimoto's Thyroiditis/ subacute thyroiditis and shingles. Its been a problem ever since.

Honestly I feel like I've been sick my entire life.

 

[Rufous McKinney]

Well, if you're asking about stress that none of us recognized at the time, it'll be kind of hard to get positive responses.

I was doing MASSIVELY stressful work. WIth what we now consider a "mild" case of ME, which does not feel mild at all when your experiencing it for most of your adult life. So I could directly observe that my job was killing me. And then another massive pile of stressors happened. I proceeded to get MUCH WORSE over a period of about 10 months. So after decades of Mild, I'm two steps from Bedridden now.

PEM therefore was an abstraction until recently, as I was not plugged into the "lingo" of our symptoms. For about 15 years, I had to limit meetings and going out...in order to RECOVER from the energy that required. So that was my version of PEM for a long time. So most of that exhaustion was mental and emotional, not physical. And then when the insomnia got really bad, I had to stop doing certain activities which triggered not sleeping, as THAT was gonna kill me otherwise.

 

[Wishful]

I was doing MASSIVELY stressful work.

Well, that doesn't qualify as unrecognized stress. Obvious stress does seem to cause or worsen many health problems. However, recognizable stress doesn't seem to be required for developing ME. At this point we can only guess at how much stress contributes to developing ME. The GET trials might indicate that stress can make ME worse.

Once they figure out what ME actually is, maybe someone can figure out which factors increase the chance of developing it. Maybe there'll be a blood test for prediliction for ME, and a recommendation to avoid certain types of activities.

"Your blood tests show that you should avoid skydiving and squaredancing."

 

[Wolfcub]

It took me quite some time to recognise PEM, and to pin it down. I think that was because at first I thought I had a viral illness that just wasn't going away as quickly as I'd expected.

I wasn't really looking for PEM in the earlier stages.

Then later in, when it was looking more and more like ME/CFS, I still found it hard to discern PEM because I had to be doing something every single day. I rested a lot, but there were still tasks that had to be done (no-one else to do them) so one day kind of ran into another in that respect.
I couldn't isolate any particular day when I had exerted myself and got PEM as a result, because it was just one huge blur of mild to moderate exertion (never anything extreme) and a miasma of constantly feeling unwell (with some days in between when I felt better for no apparent reason).

But as more time went on, I found I could understand it better. But mine came with 48 hour delays sometimes too, which made figuring it out even harder.

 

[Wishful]

Yes, PEM certainly is hard to identify, especially when you'd never heard of PEM before. It's easy to write it off as just another bad day. Even worse if you're constantly triggering it and aren't aware that you are, and if you do stop that daily exertion, you just assume that the extra rest has helped. I think it took me several years of the 'feeling lousier the day after a long bike ride' before I accepted the correlation as real. I didn't find the concept of PEM until years later.

I'm feeling lousier than usual at the moment. Is that PEM? Was it yesterday's drive to town that caused it, or did I do something physical that I don't remember? I don't know.

Stupid hard to figure out PEM!