Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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"13 Types of Sjogren's Fatigue"

Discussion in 'Other Health News and Research' started by Dolphin, Jul 23, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Woolie, WillowJ, alex3619 and 11 others like this.
  2. Sidereal

    Sidereal Senior Member

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  3. lansbergen

    lansbergen Senior Member

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    Yes typical.

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

    Bob

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    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:
     
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  5. alex3619

    alex3619 Senior Member

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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.)
     
    Last edited: Jul 25, 2015
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  6. alex3619

    alex3619 Senior Member

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    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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  7. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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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.
     
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  8. alex3619

    alex3619 Senior Member

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    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.
     
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  9. Bob

    Bob

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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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  10. daisybell

    daisybell Senior Member

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    Just read a new article on Medscape reporting on advances in diagnosing and treating Sjogren's.
    http://www.medscape.com/viewarticle/848782_1?nlid=85846_1842
    Interesting comment also posted by someone with Sjogren's who developed lymphoma and reported that the fatigue and muscle aches were improved for several years after treatment with Rituximab...
     
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  11. charlie1

    charlie1 Senior Member

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    @daisybell I can't get the article opened. Can you cut and paste it?

    EDIT: found it. :)
     
    Last edited: Aug 12, 2015

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