Fatigue self-help guide: Hi all, Due to some... - LUPUS UK

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Fatigue self-help guide

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Hi all,

Due to some inquiries about this on Tulipano's post about fatigue from a couple days ago, I'm adding a link here in a new post with some information my Rheumatologist gave me in a pamphlet called 'Fatigue and Arthritis' from Arthritis Research UK. I've found it very helpful.

I don't have arthritis, but she said it would apply to all autoimmune conditions mostly because when we are in a flare the inflammation in our bodies creates cytokines (proteins) that mimic a viral illness -- so, aches and fatigue. I just found it so helpful to know there was actual cellular activity taking place and a reason for getting fatigue out of the blue. There's lots more about it on these pages along with the self-help ideas that apply just as much to those of us with Connective Tissue Disease as with Arthritis.

arthritisresearchuk.org/art...

Panda

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I was told the same thing as you learned from ARUK info by my vascular doctor at CTD clinic.

He also said the fatigue of Sjögren’s (probably my main disease) is notoriously hard to manage because of unique viscosity of the blood from lack of moisture. Apparently this means we have fatigue regardless of disease activity or inflammation because our blood is thick and our system perceives this as inflammation and fights it 24/7. No medication will change this he explained.

It didn’t endear me to Sjögren’s too much I must say🙄

panda2 profile image
panda2 in reply to

No! I can't imagine it would!

I didn't know about thick blood being misperceived as inflammation. That's very interesting too. The last time I had blood taken, the nurse told me she'd never seen such thick blood. So it's clearly something that happens to me too. Hmmmm....

Thanks for that.

elizaSunflower profile image
elizaSunflower

Thank you so much for that link. Having a physical reason for the fatigue helps. I get so tired of trying to convince people (including my doctors) that the fatigue is real that I start wondering if it is in my head. The self doubt and judgment doesn't help anything.

panda2 profile image
panda2 in reply to elizaSunflower

Couldn't agree more, elizaSunflower. I'm going to explain cytokines every chance I have and to anyone who will listen from now on! : )

in reply to panda2

Lol I felt like I’d won the lottery when this vascular dr explained the medical science behind my fatigue. How sad are we?! But like most of us I feel lost and self destructive with symptoms that I can’t make sense of.

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