Thanks to a tweet by rheumatologist Dr. Michiel Zandbelt, I read this from Oxford Journals Rheumatology:
Fatigue and depression predict physician visits and work disability in women with primary Sjögren’s syndrome: results from a cohort study by Gisela Westhoff, Thomas Dörner, and Angela Zink
Conclusion. In pSS, lack of stamina and/or depression cause a higher level of individual and societal burden than dry eyes and mouth. Fatigue and depression deserve more recognition as treatment targets in pSS.The article was included in a themed issue on rheumatology and work, February 2012, although the original piece was written in 2011.
I've said repeatedly that even though my issues with Sjogren's related dryness are problematic, my biggest difficulty by far is the fatigue and lack of stamina that I experience almost every day. I could tote my eye drops to work with me. I could drink enormous volumes of water. I could slather on lotion every five minutes.
But.
There is nothing I can do at present to treat or erase the effects of my fatigue to the point where I could be reliably and consistently be physically able to work. And when my fatigue is at it's highest, my mental capability is at it's lowest, which only compounds the problem of being a good employee.
Currently, the most effective treatment of my fatigue is to simply become horizontal. For lengthy periods of time. Which decreases most employee's productivity significantly.
I would love to see fatigue and yes, depression, become important autoimmune disease "treatment targets".
Now. So get on it, people.
8 comments:
Fatigue (well, extreme fatigue) was my very first symptom of PSS, but it took 5 plus years and lots of bloodwork to finally be diagnosed. Depression has turned into a big problem for me as well, PLUS horrible brain fog. Fatigue is what keeps me from working outside the home, and when it hits, all I want to do is cry for my old life and old energy levels...thank you so much for this post, Julia!
I didn't know about Dr. Zandbelt, but I'm following him on Twitter now. Thanks!
As for fatigue, I am so glad it's getting more attention. It can be absolutely crushing.
I would say that dry mouth and eyes are secondary to the fatigue,pain,lightheadedness and gut problems I experience on a daily basis. I'm with you, Julia. If I had the stamina, and did not have the other problems, especially fatigue and congnitive issues, I would be able to work.
I'm the "anonymous". I guess my brain fog is worst than I thought if I forgot to type in my name!!
The exhaustion and the brain fog is the worst for me. My dry eyes, etc. aren't all that bad, but being so tired that I feel, at times, that it is unsafe to drive - now that's an issue! Not to mention having at best one to two hours where my brain is somewhat capable.
Yes, let's try to find out how to treat them!
I agree... totally.
The fatigue is the worst... therefore depression.
ToOdLeS.
I absolutely love your blog and the insight you give to those who have Sjogren's and those of us whose loved ones have it.
Thank you.
Yes,yes and YES!! I owned my own (successful) business and had to give it up. Since I was the boss I could make as many accommodations as I wanted. It didn't bode well for business when the accommodation I needed most often was a 2 hour nap. Brain fog pretty much ruined the times I was awake - I was in the marketing and communications business. Big ideas and good communication pretty much disappeared into the fog.
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