Artificial tears are great for soothing dry, gritty eyes, unless you’re constantly reaching for that little squeeze bottle. Maybe you can’t even tear up on your own. Or swallow normally without drinking water. Or have pain-free sex without lubing up. Or make it through the day without being utterly fatigued.
Bodily secretions sapped? Energy zapped? You may have more than just a case of dry eye—there’s a chance you could have Sjogren’s syndrome.
What is Sjogren’s syndrome?
Sjogren’s (pronounced SHOW-grins) is an autoimmune condition, meaning the body’s own immune system turns on itself by attacking healthy tissue. The disease targets and inflames glands that make tears and saliva. It can also attack other moisture-producing glands and damage major organs and body systems.
Scientists don’t know exactly what causes Sjogren’s. They think your genes make you susceptible, and that some environmental factor, like a virus or bacteria, pulls the trigger, prompting your immune system’s over-the-top reaction.
Although it’s the second most common autoimmune disease after rheumatoid arthritis (RA), Sjogren’s isn’t widely known and often goes undiagnosed or misdiagnosed. With its odd collection of core symptoms—dry eyes, dry mouth, fatigue, and joint pain—it can take a while for people to recognize that something’s not right, and some doctors fail to piece it all together.
And, like other autoimmune conditions, Sjogren’s symptoms can settle down for periods of time and then flare up again. Tennis star Venus Williams famously struggled with chronic fatigue and other symptoms for several years before being properly diagnosed with Sjogren’s.
Esen Akpek, MD, professor of ophthalmology at Johns Hopkins University’s Wilmer Eye Institute in Baltimore, says many people with Sjogren’s just shrug off symptoms. “For years and years, it just smolders,” she says.
Sjogren’s can occur alone or along with other autoimmune diseases, like RA or lupus.
Primary Sjogren’s “has a life of its own,” with dryness that can be “horrific,” says Tammi Shlotzhauer, MD, a practicing rheumatologist in Rochester, NY, and author of Living with Rheumatoid Arthritis. RA patients with secondary Sjogren’s experience some dry eye and dry mouth symptoms, “but nothing to the degree of primary Sjogren’s,” she explains.
While there’s no cure for Sjogren’s, there are treatments for controlling inflammation and providing symptom relief. Doctors say the sooner you get treated, the better your outcome.
What are the symptoms of Sjogren’s syndrome?
Could your dry orbs be a symptom of something deeper? Consider these Sjogren’s syndrome symptoms and signs, and get checked out.
Dry eyes
Sjogren’s syndrome inflames the body’s tear-producing glands, reducing normal tear production. People with this condition suffer from chronic dry eye.
“They will notice that they can’t tear, for example, when they dice onions,” Dr. Akpek says.
Dry eyes are more than just a nuisance. When starved for moisture, the transparent layer of tissue covering the eye can become hazy. And sometimes little perforations, or ulcers, develop, allowing infection to set in. Or other vision-threatening complications can occur.
“Chronic, significant dry eye is never normal,” she cautions. “It is a finding of something, and usually that’s Sjogren’s.”
Dry mouth
People with Sjogren’s suffer from chronic cottonmouth because they don’t make enough saliva.
“If they’re not able to eat crackers without having to swallow some water … that’s bad enough,” says Dr. Akpek, a member of the Sjogren’s Syndrome Center multidisciplinary team at Johns Hopkins University.
The composition of their saliva also changes. People with Sjogren’s may develop problems with their teeth and gums, such as cavities, gingivitis, or infection. Some people may notice that their salivary glands are swollen.
Joint pain
For some people, joint pain may be the first sign of Sjogren’s, even before dry eye and dry mouth.
Tenderness and swelling of joints, particularly in the fingers, wrists, and ankles, is a common symptom. Some people have shoulder, knee, or hip pain. Others may perceive their discomfort as muscle pain or generalized pain throughout the body.
Periods of painful flare-ups can occur due to inflammation caused by primary Sjogren’s or an underlying autoimmune condition.
Dr. Akpek says some of her patients can’t sit for 5 minutes without hurting.
Fatigue
Feeling drained? Chronic fatigue is a core symptom of many autoimmune diseases, and Sjogren’s is no exception.
Even in primary Sjogren’s, physical fatigue is extremely common.
In published treatment guidelines, University of Pennsylvania rheumatologist Frederick Vivino, MD, and colleagues describe fatigue as “among the greatest therapeutic challenges” in the management of Sjogren’s.
Dry skin, rashes, and sores
Sometimes people with Sjogren’s can develop dry or thinning skin. Or their skin can break out in a rash, often as a result of sun exposure. It can also lead to non-healing skin sores, a condition known as vasculitis.
In a recent report, doctors in Chicago describe a 29-year-old Sjogren’s patient who developed a rash on her legs and right upper arm that lasted for 6 months. Initially, her rash consisted of petechiae, or pinprick-sized dots, which are typically red or purple in color. As her condition worsened, the dots formed scattered purplish patches on her skin.
Vaginal dryness and infections
When you have Sjogren’s, it gets dry down there, too. And when vaginal secretions dry up, problems begin to surface. You might come down with yeast infections or have vaginal pain, burning, or itching.
“The normal flora is disturbed and abnormal germs take over,” Dr. Akpek explains.
Vaginal dryness, of course, in common during menopause. Unfortunately, Sjogren’s can makes things even worse for you, causing pain during sex, for example.
Numbness, dizziness, or memory problems
Sjogren’s can damage your body’s central and peripheral nervous systems.
Neurologic complications run the gamut. You might have pain, burning, tingling, or numbness in your extremities, particularly you feet and hands. Some people say they have problems with brain fog or concentration.
“You can have gait problems, like walking and balance issues,” Dr. Akpek notes. It can even affect your speech, she adds.
Are there any Sjogren’s syndrome complications?
Sjogren’s can take a toll on multiple organs throughout the body, including the lungs, liver, and kidneys. You might develop a persistent cough or come down with recurrent bronchitis, for example.
“The worst complication is obviously lymphoma,” Dr. Akpek notes.
Lymphoma is a type of cancer that begins in the affects the body’s infection-fighting white blood cells, called lymphocytes. In Sjogren’s, these are the cells that attack the body’s moisture-producing glands. Why these cells become cancerous is unclear. But people with Sjogren’s are much more likely to develop lymphoma than folks in the general population.
