I’ve kind of teased this in recent months, but back in January, I was diagnosed with Sjögren’s Syndrome after 5+ years of symptoms. As an arthritis advocate and someone who knows people with Sjögren’s, I knew a lot more than the average person does, but I still wondered what Sjögren’s syndrome is.
I’ve learned a lot since January, so I figured it was time to do a beginner’s guide to this autoimmune disease. We’re going to look at the definition, the symptoms, the treatments, and more, including, of course, how “Sjögren’s” is pronounced.
I am not a medical professional. I provide sources for all of my factual information. When in doubt, listen to a medical professional!
What Sjögren’s Syndrome Is: A Beginner’s Guide
When I was diagnosed with Sjögren’s syndrome, I knew a couple of things about it. One, it’s under the arthritis umbrella. Two, it’s an autoimmune disease. Three, dry eye and dry mouth are involved.
That’s a lot more than the average person knows about it, but it still doesn’t cover everything, or even everything important. I mean, I didn’t even know how exactly to pronounce it. So if I knew so little about it, I figured that most people could use some help.
And before we get into it, it’s pronounced show-grenz, with an emphasis on the first syllable 😉
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What Sjögren’s Syndrome Is
The absolute first thing to cover is what exactly Sjögren’s is.
The Mayo Clinic says that Sjögren’s is “a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth” (x). They go on to say that it “often accompanies other immune system disorders, such as rheumatoid arthritis and lupus” (x).
So what’s happening when you have Sjögren’s? The Arthritis Foundation says, “In Sjögren’s syndrome, the infection-fighting cells of the immune system (called lymphocytes) attack the normal cells of exocrine glands – the glands that produce moisture in the eyes, mouth and other tissues” (x).
Mayo adds that “In Sjögren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva” (x).
There are 2 different categories of Sjögren’s syndrome: primary and secondary. The NIH says that primary Sjögren’s is when “you do not have another rheumatic disease” in addition to Sjögren’s, and secondary is when you do have another one (x). I personally have secondary Sjögren’s, as I also have rheumatoid arthritis, and my RA is my main condition in general and when it comes to Sjögren’s.
This is what places it under the arthritis umbrella: it can develop as a result of having another rheumatic disease. A whopping 30% of RA patients develop Sjögren’s (x).
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Sjögren’s Syndrome Symptoms
The classic symptoms of Sjögren’s Syndrome are dry eye and dry mouth (x). But like I said, that’s nowhere near all there is about Sjögren’s!
First of all, “dry eye and dry mouth” aren’t just mildly uncomfortable. Dry eyes mean that “Your eyes may burn or itch or feel like they have sand in them” (x). This can also mean that your vision gets blurry or that you have light sensitivity (x).
For me personally, “dry eye” also means that I can’t wear contacts because my eyes can’t hold onto tears. That’s because there’s inflammation around my tear ducts, which is from Sjögren’s.
“Dry mouth” involves “your mouth feel[ing] chalky, and you may have trouble swallowing, speaking, and tasting” (x). In addition to experiencing dry mouth, I also have trouble swallowing at least once a day, if not more often. That’s a problem when you take pills 4+ times a day!
The other problem with dry mouth is that this leads to dental problems. The NIH says, “Because you lack the protective effects of saliva, you may develop more dental decay (cavities) and mouth infections, such as candidiasis (also called thrush)” (x). To deal with this, many Sjögren’s patients go to the dentist more frequently than someone without Sjögren’s.
Again, dry eye and dry mouth aren’t the only symptoms. Patients can also experience swollen salivary glands, skin rashes or dry skin, fatigue, a dry cough, vaginal dryness, acid reflux, muscle weakness, and more (x, x).
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How Sjögren’s Syndrome Is Diagnosed
You might be diagnosed by a rheumatologist, optometrist, dentist, or any combination thereof. I personally was diagnosed by my rheumatologist and my optometrist, who is a dry eye specialist, as a lot of my rheumatologist symptoms could be explained by my RA.
And I’m nowhere near the only person who experienced that while getting a Sjögren’s diagnosis. The American College of Rheumatology says, “The diagnosis of Sjögren’s cannot be based on symptoms alone because dry eyes and mouth are highly prevalent symptoms in the general population and can be caused by many other conditions or medications” (x). That’s why it took at least 5 years from when my Sjögren’s symptoms started to be diagnosed.
When Sjögren’s is suspected, it’s a good idea to see a dry eye specialist. “An eye examination with staining of the cornea and conjunctiva with vital dyes helps detect and assess for damage (i.e. dry spots) to the outer surface of the eyes caused by dryness” (x). I’m not going to lie: this is really uncomfortable, but it’s not painful at all.
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After my eye tests showed that, as my optometrist put it, “The dry eye symptoms look like it’s some Sjögren’s stuff,” we talked about other tests that could be used to diagnose it.
Blood tests to diagnose Sjögren’s include tests to look for the presence of antibodies common in Sjögren’s syndrome, inflammatory markers, or looking at your kidney and liver function (x). These tests are most helpful if you don’t have another autoimmune disease because many of these tests are the same tests done for rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis. I mean, of course my inflammatory markers are going to be elevated: I have rheumatoid arthritis.
Finally, you might need to have tests done to review your salivary glands. The NIH says, “ultrasound imaging and biopsy can help determine if the salivary gland tissues are altered by inflammation” (x). Salivary and eye tests are the ones that really demonstrate if it’s Sjögren’s or a different form of autoimmune arthritis.
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My Sjögren’s Syndrome Diagnosis
Like I said, I was diagnosed by my rheumatologist and my optometrist.
I take a lot of medications, and a lot of those medications have side effects of dry eye and dry mouth, so for a long time I thought those symptoms were side effects.
It started to seem different in 2016, when my dry eye got to the point where I really couldn’t wear contacts any more. I finally brought it up to my then-optometrist in April 2017, and she took a look at my eyes. According to her, while I was producing a normal amount of tears, my eyes couldn’t hold onto them. She offered to plug my tear ducts, but that freaks me out so much and I truly don’t care that much about contacts, so I passed.
I didn’t really think much more about it because this was also the time that I developed POTS. Like, the day after that appointment I was in the hospital with a heart rate of 180+ and low, low blood pressure. My vitals were so bad that they brought me back to the part of the ER they take people who are in car accidents or having heart attacks. So, you know, dry eye wasn’t exactly my priority.
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I just lived with it for years after that because my priority was POTS, finishing grad school, having major foot surgery, getting a job, managing a job with chronic illness, The Fiasco, recovering from The Fiasco, going to Ireland, and the pandemic.
This brings us to fall 2020. I had changed insurance companies, and I couldn’t see my previous optometrist any more. I saw a new one, and my symptoms were problematic enough that I brought them up to her. She said that I should talk to my rheumatologist about getting tested for Sjögren’s.
My rheumatologist agreed with her, but he wanted her to do it. As I mentioned, a lot of my symptoms like dry eye, dry mouth, and fatigue could be written off as side effects of my medications or due to my other illnesses. He felt that the work that would clarify what was Sjögren’s and what was RA was on the optometry side and not the rheumatology side.
By the time my annual optometry appointment came around in the end of 2021, I finally was able to make a follow-up appointment to get a full dry eye work-up, which happened in January 2022. The testing she did clearly demonstrated my dry eye symptoms were Sjögren’s related and not medication side effects or miscellaneous dry eye disease.
We decided to go the optometry route and not the dentistry route for my diagnosis because, as mentioned, a lot of my medications can cause dry mouth. My dentist would treat me and my mouth the same way regardless of what caused the dry mouth.
Additionally, the dry eye work-up is easier, cheaper, and less-invasive than looking at my salivary glands. If my dry eye work-up results had been vaguer, we would have done that next, but I’m not mad that I didn’t need it. Contrast is not my favorite thing.
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Sjögren’s Syndrome Treatment
Like other chronic illnesses, there is no cure for Sjögren’s syndrome, but treatments can help. Some treatments are for symptoms, and some are for systematic things.
Dry eye can be treated by artificial tears (eye drops), eye ointments, or tear duct plugs (x). Some eye drops can be prescription ones, but it will depend on the person if it’s necessary to use over-the-counter eye drops. I’m currently waiting for my insurance to approve prescription eye drops that I’ll take every day, but in the meantime I take over-the-counter eye drops as needed.
Some medications out there that might help are medications designed to decrease eye inflammation, and therefore dry eyes; increase saliva production, to reduce dry mouth; and to treat system-wide symptoms, like fatigue (x).
Currently, there aren’t nearly as many medications to treat the specific immune system issues of Sjögren’s as there are for diseases like rheumatoid arthritis. I hope that will change, and I do think it will; when I developed RA, there were only a couple of medications available for it, and there are so many available now.
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Sjögren’s Syndrome and Rheumatoid Arthritis
There are 2 key things that are important to keep in mind when it comes to Sjögren’s syndrome and rheumatoid arthritis: one, they’re very similar; two, like I mentioned, as many as 30% of RA patients have Sjögren’s.
You might be thinking that Sjögren’s and RA aren’t, in fact, similar. But when you look at data points of the 2 conditions, they really are.
Both involve fatigue.
Both involve inflammation, especially inflammation markers in your blood work.
Both involve joint pain.
And if you’re on RA medications, you can have dry eye and/or dry mouth from side effects and from Sjögren’s.
I’m currently learning how to differentiate between my RA and my Sjögren’s, but since I’ve pretty much got this whole chronic illness thing down, there isn’t too much of a learning curve. The biggest thing I’m working on is paying attention to when my dry eye and dry mouth increase and decrease so that I can figure out patterns and adjust my life accordingly.
But if you have rheumatoid arthritis and you experience dry eye and/or dry mouth, make sure you talk to your rheumatologist about Sjögren’s. It’s better to be safe than sorry!
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Sjögren’s Syndrome and Fibromyalgia
While Sjögren’s is less connected to fibromyalgia than it is to rheumatoid arthritis, it is important to look at these two conditions.
Fibromyalgia is another condition under the arthritis umbrella, and it’s one that causes widespread pain, sleep trouble, fatigue, and more (x, x).
People with RA are more likely to have fibromyalgia, just like Sjögren’s (x, x).
AFAB people (people assigned female at birth) are more likely to have fibromyalgia, just like Sjögren’s (x, x).
You’re more likely to develop fibromyalgia as you age, just like Sjögren’s (x, x).
Many of the same blood tests are run for fibromyalgia as there are for Sjögren’s, but in Sjögren’s the results indicate if you do have Sjögren’s, while in fibromyalgia the results indicate if you have any other condition, and if they’re all negative or normal, then you might have fibromyalgia (x, x).
In addition to Sjögren’s and rheumatoid arthritis, I have fibromyalgia, and I can very clearly identify which of my symptoms are for which condition.
Except for fatigue; all of that sh*t’s blends together to give me a fatigue soup. All 7 of my conditions have fatigue as a symptom. Unfortunately, when I developed Sjögren’s, my body didn’t go, “Oh look, someone has already covered fatigue. Guess we don’t need to give her that.”
There are, of course, many other things that make fibromyalgia different from Sjögren’s, but as you can see, there are a lot of ways they are similar.
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I hope that this post has helped you to better understand what Sjögren’s is, whether or not you have it. Maybe you have it, maybe you’re wondering if you have it, maybe you know someone who has it. Like the title of the post says, this is just a beginner’s guide, but I think it’s a pretty good way to start your Sjögren’s knowledge journey.
Like this post? Share it! Then check out:
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Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Thank you so much for posting this information. I have had many symptoms of SD for many years but never a diagnosis. In 2007 I was diagnosed with Fibromyalgia. I also have spinal stenosis and fusion in my neck and lower back. The doctors tell me I have spondyloarthritis but not AS. I don’t agree but what do I know! Now I have developed Peripheral Neuropathy but vascular and arterial studies are normal. No blockage or reflux. This summer has been so frustrating. I will be seeing a Cardiologist soon. I will be following your post. I am a retired RN. Sometimes having been a Nurse is a disadvantage because you know just enough to be scared .