Sjogren's: Dry Eyes and Dry Mouth

The Myth of Isolated Symptoms.

So many of my symptoms were ignored because they did not fit into the classic categories of dry eyes and dry mouth. It took over five years for me to be diagnosed, perhaps because I never complained of dry eyes or dry mouth. The symptoms that affected my life were widespread and systemic, but none of my initial doctors associated them with Sjogren’s.

“The symptoms that affected my life were widespread and systemic, but none of my initial doctors associated them with Sjogren’s.”

I was diagnosed purely by chance, on my primary physician’s suspicion that I may have arthritis. I hate to think of how much longer it would have taken for an accurate diagnosis had this accidental one not occurred.

Even after I was diagnosed with Sjogren’s, my initial rheumatologist (from a reputable hospital) focused only on treating dry eyes and dry mouth. He barely acknowledged my fatigue or chronic feelings of malaise. It frustrated me tremendously that these specialists, while versed in analyzing blood tests and antibody levels, knew so little of the physical symptoms and manifestations of the condition. Maybe their medical training focused only on the former, and not the latter, but how can doctors effectively treat patients if they are not familiar with the physical manifestations of symptoms and cannot connect symptoms to disease.

“Why is it that with all of these patient information around us, some medical professionals are still fixated on dry eyes and dry mouth?”

Once I looked into internet resources for Sjogren’s, I noticed that many Sjogren’s patients complained of fatigue. Even some high-profile ones, like Venus Williams, described initial symptoms of fatigue and not being able to get out of bed. Why is it that with all of these patient information around us, some medical professionals are still fixated on dry eyes and dry mouth?

When I told another rheumatologist that I seemed to have flares, periods when I would feel extremely unwell, she remarked that it was atypical of Sjogren’s. When I suggested using a corticosteroid such as Prednisone to treat flares, she was doubtful, but went ahead with it because I insisted. There was this mindset among certain rheumatologists that treating Sjogren’s meant only treating dry eyes and dry mouth and dismissing the various other symptoms as “atypical.”

But my symptoms were not actually atypical. When I finally went to Johns Hopkins’ Sjogren’s Center, the physicians there actually acknowledged that patients with Sjogren’s often experience fatigue and malaise. When I eventually found physicians in NYC who had practical experience treating Sjogren’s, they noted that my symptoms and flares were common, and that Prednisone was a good course for treating them (although dangerous if used too often).

I hope to debunk the myth that Sjogren’s is simply a mild autoimmune disorder that causes dry eyes and dry mouth. While autoimmune disorders can affect individuals differently, there is certainly evidence that, for many people, it can be quite systemic and debilitating. Please share how Sjogren’s affects you and how you have coped with its symptoms.