When talking with my rheumatologist today about my concerns, I was trying to stress that it’s not the dry eyes and dry mouth (the “hallmarks”) of Sjögren’s that is concerning me…it’s the fatigue, muscle weakness, loss of fine motor control, joint pain, etc.
If it was just the dry eyes and mouth I would be much better off than I am. Those are annoying symptoms, but not life-altering like the others!
I explained that I get a good 8-9 hours of sleep each night and then often need a nap (I don’t always get it, but almost always need it). So a lot of days I’m sleeping 11 hours of sleep (or more!)
When I was talking to the resident rheumatologist (a whole other frustrating experience I previously blogged about), he asked of if had a sleep study when I was describing my fatigue. No, I haven’t. Yes, I know what sleep apnea is. No, I don’t snore (unless I’m sick and am congested or something). No, I’m not a mouth-breather when I sleep. Yes, I feel like I got good sleep at night when I wake up – I don’t wake up exhausted…I just don’t make it long in the day before the exhaustion sets in.
And then today my attending doctor went through the same conversation with me. And has actually ordered a sleep study.
Why is it so hard for these rheumatologists to fathom the bone-deep fatigue is due to my autoimmune diseases instead of some other cause that doesn’t fit what I’m telling them?
Fatigue is a major symptom of autoimmune disease. Every website, every organization and association working with these diseases and every informational pamphlet talks about it. So why do the doctors that specialize in these diseases find it so hard to believe that fatigue is one my most concerning symptoms of autoimmune disease?
My primary care doctor is great, but it took four months of complaining that fatigue is my most debilitating symptom before she really heard that. Some doctors never get it. The other day, my primary care doctor said she’s sorry she didn’t hear me at first, that she was too worried about my pain to “get it.” She says that realization has made her a better listener for me and other patients, so that’s lovely. It’s so frustrating that even doctors can’t contemplate the kind of fatigue we’re trying to communicate about.
Thank you so much for your blog. You put into words what all of us go through when dealing with our autoimmune(s).
I am on Rheumy #5 and I have to go through all the tests, treatments all over again! Can’t they read the chart notes and see I have already tried everything already? I have been in pain for over 15 years and the prescriptions I am on now( thanks to a listen and get it primary doc). Now #5 wants me to go to classes to learn how to deal with my pain. Really?!