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"13 Types of Sjogren's Fatigue"

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Sidereal

Senior Member
Messages
4,856
Rebound fatigue
2. If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.
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L

lansbergen

Senior Member
Messages
2,512
Yes typical.

During flares I have very dry mucosa but the glands are still not destroyed, only temporarily out of order.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Very interesting. Thanks for posting, @Dolphin.

There are some very interesting parallels with ME/CFS, as well as the extract that @Sidereal has posted above:
Flare-related fatigue
7. Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.
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Fatigue that impairs concentration
9. Fatigue that impairs concentration precludes thought, makes me too tired to talk, think or read. Fatigue robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts. For me, brain fog goes hand-in-hand with other kinds of pernicious fatigue.
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It's difficult to explain the unnatural quality and intensity of this fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. It’s apples and artichokes. Sjögren’s fatigue is pervasive. It assaults everything I do. There isn’t a part of my life that hasn’t been touched by it. It is there even on my happiest days.

Because people don’t understand, it’s often misinterpreted. "Is it depression?" a health care professional who didn't know much about Sjögren’s asked me. I tensed. Was he saying it was all in my head? I began to get angry but then gave him the benefit of the doubt. I put my first reaction aside and decided he was trying to understand. I was relating something outside his frame of reference, and he was attempting to find a point with which he could identify.

...

"No," I said to the doctor who asked about depression, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.
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alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Sidereal said:
Rebound fatigue
2. If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow. An extended period of doing more than I should will almost certainly cause a flare.
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Sounds a lot like PEM.

(PS When I first posted this I did not notice my quoted section was missing, being a quote within my quote.)
 
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Woolie

Woolie

Senior Member
Messages
3,263
alex3619 said:
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.
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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.
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I have discussed the fatigue label issue before. I am going to have to think about it, too spaced right now to reply. Its a lot like the mythical umpteen names for snow the Inuits supposedly have. If someone is deeply involved with something they can create additional names. I think this is worth at least working on to see where it goes.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Woolie said:
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.
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I'm not sure if being a relapsing-remitting case and having really marked flares is atypical, Woolie. I think a lot of us experience that. I don't know what proportion though. Or, perhaps not many of us experience a full remission, but relapsing-improving may be a more accurate description for many of us.
 
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