Thursday, October 9, 2014

An Accurate Assessment: " ever-present, fluctuating, and nonrelievable lack of vitality"

Ever play Sheepshead? According to the rules of the game followed by our family, the queen of clubs is all-powerful. She's the trump that trumps all trump. If that makes sense....

Thanks to the Sjogren's Society of Canada for tweeting the link to the results of this small study entitled Primary Sj√∂gren's syndrome: fatigue is an ever-present, fluctuating, and uncontrollable lack of energy by Mengshoel AM1, Norheim KB, Omdal R, conducted at the University of Oslo, Oslo, Norway, and published in Arthritis Care Res 2014 Aug;66(8):1227-32. doi: 10.1002/acr.22263.

The study authors conclude:
Fatigue in primary SS clearly differs from ordinary tiredness. Patients describe it as an ever-present, fluctuating, and nonrelievable lack of vitality being beyond one's own control.
I would agree with this study's conclusion (what an understatement), and I wish I had access to the entire study results rather than just the abstract. We need more and larger studies that examine the fatigue associated with Sjogren's syndrome. This fatigue is real, it is life-changing, and it is debilitating.

I've said it before and I'll say it again: Fatigue is the _most_ catastrophic symptom of this disease for me. Yes, I have dry eyes, and yes, I have a dry mouth and enlarged parotids. I also deal with peripheral neurophathy and have a seriously cranky GI system which is in all probability related to my autoimmune disease. These things impact my life, yes.

But fatigue?

Ah -- there's the trump card. The big one. The queen of clubs. The factor that is responsible for dictating the events of my entire life.

C'mon, research world. Get ON it. I really want to win this game.


Jane said...

Too true - it is the worst symptom of my disease too - I could almost stand the rest...

Melody said...

My doctors have been working on a solution for my ongoing sinus infections/bronchitis now for a couple of years. What I'd really like a solution for is the fatigue! They've suggested Intravenous Infusion (Xolair) in a effort to keep me from constantly having infections. I'm wondering if it will also help the fatigue issue. Does anyone have experience with this?

Christina said...

I was told to exercise, since I also have Fibromyalgia, and I said well what makes you think I don't exercise? I do and have since way before being diagnosed. It's only become worse over the years with exercise, not better. I actually blogged about exercise and fatigue today.

Kate S said...

Agreed. and yet again, agreed.

And for me, it's dear companion, brain fog.

Brigid Rauch said...

Noodling around at the link, I came across the term "autoimmune epitheliitis", which sounds so much more accurate and impressive than "dry eyes and dry mouth"!