What is Sjogren's Syndrome?

Sjogren's Syndrome (pronounced SHOW-grins) is an autoimmune disorder that is surprisingly common, affecting between 0.5% to 1% of the population in the United States. While it has a larger prevalence in women over age 40, Sjogren's can affect anyone at any age. Like a lot of autoimmune disorders, it often shows up with others of its ilk, such as better known counterparts, Lupus and Rheumatoid Arthritis (RA). If it does show up with friends, it's called Secondary Sjogren's Syndrome, and if it occurs alone, it's called Primary Sjogren's Syndrome. If you google Sjogren's, you'll find a lot of info about dry eye and dry mouth, since these are two pretty common symptoms, but they're far from the other only ones.

Like most autoimmune disorders, Sjogren's tends to attack certain areas of the body first. In this case, it's usually the lacrimal (tear) and salivary (saliva) glands, but it will go after any moisture-making cells in the body if allowed to, affecting joints and sometimes even the lungs. Like other autoimmune disorders, it can mess with your entire body from brain to t0es. Despite this, it's still not a well known disorder or one that gets nearly the amount of funding/research that others do because it's "just" a disorder of dry eyes and mouth. Right?

I really wish that was it, I do.

I've wondered about having Sjogren's since I was in my early twenties. I ended up with this weird reaction after going to the dentist with the sides of my lips cracking. Turned out, it was something called angular cheilitis, which is sometimes seen in Sjogren's, but can also be seen in allergies and a host of other things. Still, I dismissed it because I didn't have dry eyes and my dentist said my mouth wasn't dry despite the fact that I hated to eat without something to drink because food would stick in random parts of my mouth. But that's totally normal...

The dry eyes and dry mouth didn't start until my early 30s. Once upon a time I used to be able to wear contacts all day long. Now? Yeah, I can hardly tolerate them for five minutes. And my mouth? No amount of water will ever make it feel like it's not cotton-y or stop food from sticking to my teeth when I eat, forcing me to swish with whatever I'm drinking to free the food and swallow. And that's just the "normal" dryness, since Sjogren's can attack any and all lubricating glands in your body, turning you into the equivalent of a human desert.

Another common symptom of Sjogren's is joint pain. I've had back pain since I was about 13 years old. I probably should have figured out that wasn't normal, but hey, I was a kid who was told to stop complaining because "nothing is wrong" with me. Suffice to say, the pain continued to get worse as I got older. And then came the fatigue (also another common autoimmune symptom) that I wrote off as me being lazy. Or maybe it had been there before. It's really hard to tell when certain things started because they built up slowly over time. Eventually, however, it turned into me getting so stupid tired in the middle of everyday things that I have to lay down and take a nap to have a hope of functioning the rest of the day. Again, these are all "normal" symptoms of Sjogren's. But since it isn't destroying my kidneys or twisting my joints, it's clearly not that bad. Right?

My kidneys might be alright (though I'd like to debate that after the kidney stone I had last year) and my joints don't appear to have any extra damage to them, that doesn't address quality of life. It also ignores other symptoms caused by the damage Sjogren's does like fatigue, neuropathy (tingling, numbness, and pain caused by nerves so NSAIDs and Tylenol do jack), brain fog, skin rashes, repeat sinus infections, and hoarseness. There's so much still unknown about Sjogren's! This includes a lack of viable treatment options beyond symptom management, but that's for another post.

Anyway, if you're curious to learn more about Sjogren's, you can find info at the Sjogren's Foundation or the Mayo Clinic. If you have Sjogren's or think you might, Sjogren's Advocate is another great resource for information, particularly if you're having trouble getting a diagnosis or the care you need. If you're curious what it's like to live with, at least for me, check out my tags for any entries under "Sjogren's," or hit the subscribe button and you'll receive updates to the blog straight to your email. Be warned, I also blog about lots of geeky stuff, writing fiction, and yarn.