Anyone else almost never feel tired but do suffer from PEM?

[Sam200]

I have been dealing with what I think and have been told is me/CFS for about six years.

At the beginning of my illness I did have a lot of tiredness but over the years this has faded. Recently it almost feels like I have too much energy and have to restrain myself because if I do anything remotely strenuous, even concentrating for 30 minutes, I will get PEM. My PEM doesn't involve feeling tired either unless it is really severe, I just get swollen glands, sore throats, headaches, and muscle aches. I am seeing a chronic fatigue specialist but they just don't seem to understand that I seem to have this illness but not the tiredness in the name.

I'm just wondering if anyone else is the same way or if I am just crazy or have the wrong diagnosis?

 

[Wolfcub]

I do get tired. Well, "tired" is the wrong word. This is more like absolute exhaustion so I start to get shaky.

But I also do get times when I start off feeling as if I've only slept 2 hours or something the night before -then suddenly get a burst of "normal" positive energy out of nowhere.
Most times I'll just enjoy the feeling but not push too hard, finish my walk or whatever I'm doing, and go home or try to focus on steadying out. I won't do any extra things I can sensibly avoid.

That feeling seems to signal that PEM isn't far away.
But it is so tempting to slip into the old thing of feeling better -great -now I can do stuff!!
That's the way it always USED to work before ME/CFS

It's hard for me to define PEM and always was as I have to be active to some extent every day. Some days I get away with it....some days not. And my PEM can be delayed sometimes by two days. So at times it's hard to find the trigger.

 

[Wishful]

The 'fatigue' or 'tiredness' of ME is really hard to define. For me, it's a lack of mental energy; my legs would be okay with a 6 hr bike ride, but my mind wants to flop down onto a pillow and rest. I no longer get PEM from physical exertion. I can imagine ME allowing mental energy, but still having PEM. I certainly wouldn't consider it crazy, and PEM is pretty much the defining symptom of ME (I still get PEM from cerebral exertion).

 

[keepswimming]

At the beginning of my illness I did have a lot of tiredness but over the years this has faded. Recently it almost feels like I have too much energy and have to restrain myself because if I do anything remotely strenuous, even concentrating for 30 minutes, I will get PEM. My PEM doesn't involve feeling tired either unless it is really severe, I just get swollen glands, sore throats, headaches, and muscle aches

Some of what you've said here definitely sounds familiar. Actually it's been the other way round for me, nowadays I do experience feelings of tiredness, but when I first got ill, I felt more like you describe. I wouldn't feel tired, I'd think I had energy, but then I'd do too much and get PEM. PEM wouldn't necessarily mean I felt tired, sometimes it would just come out in the ways you've described, along with getting very emotional (a sign of tiredness I guess) and IBS attacks. This really confused me and made me doubt myself and my symptoms.

As time has gone on I feel I've become more aware of how tired my body and mind gets. I'm not sure if this is because my symptoms have changed, or that I now understand and notice the signs of tiredness more, and by managing it better I've stopped running on adrenaline (which I find masks feelings of tiredness but leads to PEM).

That feeling seems to signal that PEM isn't far away.
But it is so tempting to slip into the old thing of feeling better -great -now I can do stuff!!

This sounds familiar! When I first got ill I used to believe that I really had normal energy again, do too much and then have an almighty crash... But like you say its critical to pace even when you don't feel like you need to...