You may have Sjogren's Disease if...
(Disclaimer: I'm not a doctor or any other type of medical professional. This post isn't intended to give medical advice.)
If you’ve heard of Sjogren’s (and don’t feel bad if you haven’t), you probably think of it as an autoimmune disease that causes dry eyes and dry mouth. Which it does — here’s a link to a Johns Hopkins page where you can read all about it. But it’s not widely understood, even among the medical community, and it can take people years to get a diagnosis. Moreover, a lot of doctors aren’t aware that there can be systemic effects that go far beyond the eyes and mouth, which makes it hard to connect the dots (and why the medical literature is only now starting to call it a “disease” instead of a “syndrome”). Looking back, I can see that I had symptoms for decades before getting diagnosed.
That’s what this post is for. You may have Sjogren’s Disease if…
You don’t have eyebrows
As strange as it sounds, losing your eyebrows — especially the outer two-thirds — is fairly common. This is why my midwestern husband will have to pry my makeup out of my cold, dead, southern hands. I’m not leaving the house without eyebrows, and if I’m going to draw eyebrows on my face, I might as well go the distance. Sephora loves me.
This is really a thing?
It sure is. But you don’t have to draw eyebrows on if you don’t want to. I’m a diva.
You can hear yourself blink
If you hear a “click” every time you blink, it’s not just weird; it could be Sjogren’s, especially if your eyes are very dry. Every time you blink, your eyelids rubbing over that dry surface causes irritation, eventually creating rough spots. Those rough spots are why you can hear yourself blink.
(Author’s note: I had actually forgotten about this one until just this morning. I was reading a Twitter thread on autism, and several people mentioned this as something that drives them nuts. As I kept reading, I discovered that an awful lot of the things that bug autistic people are also symptoms of Sjogren’s Disease, although it would take somebody a lot smarter than I am to decide if there’s any possibility of causation or comorbidity. I’m not implying that, and my teeny brain can’t imagine a mechanism by which there could be causation. I’m just pointing out something I found interesting.)
You have to drink before you can talk
And I’m not talking about having to do tequila shots before you can strike up a conversation with a stranger in a bar. I’m talking about having to take a sip of water (or other beverage of your choice) so that you can pry your tongue from the roof of your mouth.
My family likes to lovingly (I hope!) make fun of me when I do this. They keep peppering me with questions while I’m struggling to get my mouth open.
If you wear contacts, they float up when you blink, and your eyes itch like crazy when you take them out
Sounds crazy, right? It really isn’t, though. The dryness can cause little rashes on the inside of your eyelids, and when you blink, they drag your contacts up.
Similarly, the contacts protect your eyes from the rash on your eyelids. So when you take your contacts out, there’s nothing to shield your eyes from the rash when you blink. This happened to me decades ago, but I still remember rubbing my eyes so hard that it caused what looked like little blisters — I couldn’t even close my eyes all the way.
So that’s why my eyes hurt worse when I take my contacts out (since this is exactly the opposite of what you’d expect)?
Yep, and it makes so much sense that I still wonder why none of the doctors I saw mentioned it. But this was about 25 years ago, when there wasn’t as much information about Sjogren’s Disease as there is now.
If you wear glasses, you can never seem to get the right prescription
I’ve lost count of how many times this happened to me. Sitting in that big chair at the optometrist’s office, having dutifully answered a series of, “Which one is better, A or B?” questions, we’d get my vision to 20/20. Then I’d pick my glasses up, thinking, “Maybe this time it will work!”, only to get out in the real world having to strain to see once again.
Eventually, my vision totally collapsed. I was seeing double — not totally double, but more like text with a drop shadow. And the timing was horrible. I had spent months providing content strategy services for a client’s book. Now it was time to proofread, and I couldn’t tell the difference between a comma and a period if my life depended on it.
This time I went to an ophthalmologist experienced in working with Sjogren’s patients, and he quickly solved the mystery of why I could never get glasses that worked. When your eyes are that dry, every blink roughs up the surface of the cornea, and that affects your vision.
“Hmm…so is that why I can never get a glasses prescription that works?”
It sure could be. All of those the glasses prescriptions I got were correct for that single moment in time, but my vision wasn’t stable — not only from one day to the next, but even within the same day. I could work until early afternoon, but eventually I’d get to the point where I couldn’t really focus no matter how big I made the text.
You have a cough that just won’t stop
Or you’ve been diagnosed with cough variant asthma, even though your oxygen levels are always perfect
Aside from the days of having three children under 4, this was the most sleep deprived I’ve ever been. When I say I had a cough that wouldn’t stop, I’m not exaggerating. I’d cough for two or three months at a time, sometimes for 30 minutes straight (or until I threw up). My husband and I would take turns sleeping on the couch so at least one of us could sleep — although my coughing was so violent I don’t think it mattered.
Eventually, my doctors and I figured out that a round of steroids would clear it up, although nobody really knew why. (The one good thing is that, once I finished the steroids, I would crash and get the best sleep of my life!)
“Oh…could that be why I can’t stop coughing, even when I’m not sick?”
Yep. It’s called xerotrachea — literally “dry trachea”. It’s a common symptom of Sjogren’s and other autoimmune diseases.
Editor’s note: If you cough a lot, please be careful what you eat. I started coughing one time when I had a mouthful of baby carrots. I inhaled them, started choking, and thought I was going to die. And all I could think about was my three babies napping upstairs.
You wake up in the middle of the night completely unable to breathe
This only happened two or three times, but it’s scary enough to scar you (and your spouse!) for life. I’d wake up unable to draw a breath, my throat so closed up that I couldn’t even make any noise. All I could think about was that, by the time an ambulance could get to me, I’d be dead. Eventually, though, I’d be able to draw tiny, tight breaths. After about 30 minutes, everything would be back to normal.
Could Sjogren’s have been responsible for those choking episodes, too?
It’s amazing what you can get used to when you have all of these strange, scary symptoms and nobody has any answers that make sense. I had always chalked this up to just another one of those weird things that was my normal.
But once I had a rheumatologist I trusted, I asked about it. Once again, Sjogren’s was indeed the prime suspect, causing something called laryngospasms. As it turns out, they’re not really dangerous, as terrifying as they are to experience. As my doctor jokingly said, “The worst that will happen is that you’ll pass out. Then your muscles will relax and you’ll be fine.”
Your teeth look like those of a meth addict
I had regular dental care my whole life, and I brushed and flossed like a good little girl. Nonetheless, by my mid-forties, the enamel on my teeth was so eroded that you could see the different layers. They also looked tiny in comparison to normal teeth.
I’ll be the first to admit I’m a diva (read: vain), but spending thousands of dollars for cosmetic fixes to my teeth was more than I was willing to do. But then the pain from the exposed dentin kicked in. Even semi-cool air hurt. So I went to see a friend’s husband (Hey, Giles!) to discuss my options. We decided that the only real option was to crown every tooth, a few at a time over the course of nearly a year. I ended up with a perfect, white smile — although I wasn’t sad when one of my front teeth chipped. I thought it added a touch of character!
For the record, I’m aware of my privilege in being able to afford a mouthful of crowns. Otherwise, I would have had to have all my teeth pulled and get fitted for dentures. So I’m going to undergo some self-inflicted humiliation and share a picture of what my teeth looked like before the crowns (my rheumatologist said he’d have diagnosed me from this picture alone!). This is the picture my dentist took on my first visit:
See? Meth addict.
Looking back, I’m mortified. I can’t believe I let things go so far (it’s so easy to just get used to stuff), and I can’t believe I’m showing it to you. But in the name of authenticity, here it is.
So could Sjogren’s be behind my dental problems?
Yes. In fact, dental hygienists are often the first health care providers to suggest Sjogren’s Disease, because they see it up close and personal. Lack of saliva wreaks havoc on teeth. Sometimes it just causes a lot of cavities. Other people are like me and suffer extensive erosion of tooth enamel. If your teeth look anything like mine (and you’re not on meth!), you should raise the question with your dentist — especially if you have erosion at the gum line.
You feel things that aren’t there
Sjogren’s can have so-called “extra-glandular” symptoms, one of which is neuropathy, a sign of damage to the nerves. For me, it first manifested in the sensation of water running down my legs, or feeling like I had stepped in a puddle (not impossible since we have an elderly dog who has forgotten her bathroom manners, but still).
My doctor put me on gabapentin, and that helped a lot. It also gave me just enough knowledge to solve another problem that had been driving me nuts for years, as you can read below.
So I’m not crazy?
Well, you may be. I don’t know you, after all. But if you’re feeling sensations that aren’t real, it’s certainly worth asking your doctor about it.
You itch to the point of insanity — and scratch until you’re bruised and bloody
I think the itching started when I was in my early 20s. You might be thinking that itching would be an expected result of the dry skin caused by a disease that parches every moisture-producing gland in your body, but this wasn’t normal itching.
This was stick-a-fork-down-the-back-of-your-dress-in-a-fancy-restaurant itching. Pay-no-attention-to-the-blood-and-bruising itching.
And there was never a rash to start with; that only happened after my relentless scratching. I truly worried my mind might just crack if it didn’t stop.
I finally asked my rheumatologist if the incessant itching could be a type of neuropathy. He said he had never heard of it, but that it was certainly possible. He upped my dosage of gabapentin a bit, and now my itching episodes are few and far between. (Have I said how much I love my rheumatologist?)
So this damned itching could be about more than just dry skin? That’s why moisturizer doesn’t help?
It’s certainly possible, and definitely worth asking about. Especially if you have a dog like mine, who never met a moisturized leg she didn’t want to lick.
Takeaways
While Sjogren’s Disease does primarily affect the eyes and mouth, it’s a systemic disease. It can affect every part of the body — fatigue, joint pain, stiffness, and even organ damage are all in its arsenal. To make things even more challenging, a lot of doctors don’t know much about it. I’ve had a pulmonologist tell me Sjogren’s doesn’t affect the respiratory system (false) and an orthopedic specialist tell me Sjogren’s doesn’t affect the joints (also false).
Moreover, it can be tough to find a good rheumatologist. There aren’t enough where I live, so some are choosy about which patients they take on. I had one doctor turn me down because I’m seronegative (meaning I lack the antibodies that are markers for Sjogren’s) even though it’s estimated that as many as half of all people with Sjogren’s are seronegative.
I had another tell me I shouldn’t be doing my own research. She claimed that, if she found a lump in her breast, she wouldn’t do any research before talking to a doctor who knew more than she did.
First of all, bullsh*t.
Second of all, I’m a content writer who covers a wide range of topics. I know how to do research. I’m not getting my info from WebMD; I’m getting it from Mayo Clinic, Cleveland Clinic, NIH, Johns Hopkins, and clinical reports.
Plus, the few rheumatologists we have here are clustered in just a few practices, none of which allow you to switch doctors. Which explains why I make a six-hour round trip a few times of year to see my incredible rheumatologist halfway across the state. If something comes up between visits, we communicate through the portal.
Finally…
I want to reiterate that I’m not a doctor and have no business giving medical advice.
I wrote this article to let my readers know about a lifetime of random symptoms that turned out to have a single explanation — things that had plagued me for years but that I had just accepted as my weird normal.
So if you’re experiencing any of these things, or they make you wonder about other symptoms you’re having, talk to your doctor. Most rheumatologists won’t see you without a referral (even if your insurance doesn’t require one), so you may want to start with your primary care doctor or even your dentist, especially if your teeth are eroded at the gum line. An eye doctor can also perform a couple of non-invasive tests that can help you build a case.
This site, Sjogren’s Advocate, is an outstanding resource for getting doctors to take you seriously. I highly recommend it to anyone having trouble getting proper care. It’s also a great place to educate yourself about the disease.
Do you have anything to add? If you have Sjogren’s and would like to share your weird symptoms, or if you have questions, please comment below. I’d love to get a robust conversation going on this topic. And feel free to share with anyone you think may benefit.
And, as always, please subscribe if you’d like to see more posts like this. The more subscribers I get, the more visibility I’ll have — and the less likely I’ll be to get discouraged and give up!