Let me point out that some with Sjogrens might actually also have ME, so the different types of fatigue, one of which is PEM-like, might not be specific for Sjogrens.
Yes, a few folks on the boards here have both diagnoses.
I wonder if it might be worth trying to put together a "vocabulary" for fatigue-related complaints? Its seems one of the problems with reporting fatigue to our docs is that it covers so many things. The doctor thinks of one thing (like the pleasant relaxed tiredness you get from an afternoon hike, or maybe the feeling you get when you have to get up and go to a job you don't like). We think of something else entirely.
To start the ball rolling, I get three distinct types:
"lying beneath a cement block" sensation. Like my diaphragm is compressed, and its hard to breathe. This one comes on of its own accord, and usually heralds a new flare for me, and I'll likely see more severe symptoms come on in the next 2-3 days. I suspect this type of fatigue is related to some new infection I've acquired. It usually means getting rest, but as long as I rest, I'm often still able to do some things, like read or write.
On a rating from 1 to 10 of tolerability, with 10 being the worst sensation you can imagine, excluding localised pain (which is probably nausea for me), this one is a 2.
"burning head and muscles" sensation. This one is caused by overdoing it, and for me, often comes on during the night after that activity, or the next day. Its a sharp feeling in my muscles, throat glands and head, accompanied by a throbbing or pulsing sensation (maybe high heart rate?). The feeling is there even when I'm resting, but feels much worse even after light exercise, like going to the bathroom.
Tolerability rating: 3
Full flare sick/immobile feeling: This is the worst for me. It happens when I'm in full flare. Its a sick malaise feeling (but not like anything I ever experienced when sick before ME). Moving any muscle, even a finger, makes me feel more awful. But doing nothing doesn't make it go away, you still feel awful. Just have to wait. A lot of accompanying headache, sometimes also feel very hot, although not always enough to raise the thermometer.
Tolerability rating: 9 awful!
I'm pretty atypical, I think, cos I'm a relapsing-remitting case (so I get really marked flares). So would like to hear from others that are more typical.