A desert in the silhouette of a man

Dry, Cracked, and Very Parched

A few years ago, I presented with blurry vision and a weird sensation of people moving away from me while I looked at them. The best way I can describe that it was like forced-perspective and, the longer I looked at someone/thing, they jumped backward.

It was a very odd sensation so I went to my ophthalmologist and he diagnosed me with severe dry eye due to secondary Sjogren’s. We began drops and he gave me other tips on how to manage my dryness and the symptoms receded. And, since then, my Sjogren’s really hasn’t been too much of an issue…

Until last year…

Symptoms of secondary Sjogren's syndrome

Even with the drops, my eyes felt dry and itchy. The veins were prominent and red. My eyes were puffy and uncomfortable. But, it didn’t stop there. Now, I was experiencing Sjogren’s symptoms everywhere. My skin was cracking and my mouth was sticky. My throat was perpetually sore. I barely had saliva and I experienced another surge of cavities in my teeth.

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I have experienced these symptoms before when my Sjogren’s flared (usually, in tandem with a rheumatoid arthritis flare), but it was not that perceptible in the sense that I sort of noticed it but it didn’t bother me.

For the first time, in December 2019, I weathered a severe flare with the above symptoms but to. the. extreme.

A severe flare with Sjogren's syndrome

I couldn’t swallow, my nose and sinuses bled, my head ached because my sinuses were so dry. My skin cracked and bled, I applied lip balm and it immediately disappeared. My lips were bruised. I had canker sores in my mouth. It actually felt like the moisture was being pulled out of my body.

It was a very weird sensation. I drank more water, but it was just siphoned away. I moisturized like mad but I might as well have been rubbing water all over my body. I felt like a reptile left out too long under a heating lamp.

The symptoms simply went away

And, then, one day it went away as quickly as snapping my fingers. I felt plump again. My skin returned to normal. My sinuses were no longer bleeding and I could actually swallow (and food didn’t feel like it was scratching the inside of my throat).

What triggered that Sjogren's flare?

We still don’t know what triggered it or why it went away. My RA was not particularly symptomatic at that time and the Sjogren’s flare didn’t really coincide with anything (period, sinus infection, change in dietary habits, etc – and you KNOW I keep tabs on everything so I would have noticed any trends).

And, really we don’t know what else we could have done to treat it. I kept my water intake up, I moisturized, I wore sunscreen, I used my humidifier, I used my drops and rinsed my sinuses. What else was there to do but weather this storm?

It was so uncomfortable

I never experienced it again and I am happy about it. I remember texting my cousin saying I wanted to scratch my skin off because it was so uncomfortable. I guess it was one of those funny things that happen with rheumatoid arthritis sometimes. Usually, I can figure out the cause of a particular symptom but, 1 out of 10 times, it pops up out of the blue.

Do you experience excessive dryness? What brings you relief from it?

This article was originally written by Monica Y. Sengupta and published on our sister rheumatic community, RheumatoidArthritis.net.

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