A hoarse voice. Itchy eyes. Wanting to crawl back into bed in the morning because you’re still tired. These symptoms might sound like allergies or a cold, but in some people, they could indicate that you have a chronic autoimmune disease: Sjögren’s syndrome.
An autoimmune disease occurs when your immune system starts attacking your body’s own healthy cells by mistake. In the case of Sjögren’s syndrome, the immune cells mainly target saliva- and tear-making glands, but Sjögren’s is a systemic disease that can affect the entire body. Symptoms usually first show up in adults over the age of 40, especially women.
Sjögren’s can occur on its own (primary Sjögren’s syndrome), but it more commonly overlaps with a pre-existing autoimmune disease like rheumatoid arthritis or lupus (known as secondary Sjögren’s syndrome).
In fact, studies show that up to 31 percent of people with rheumatoid arthritis have Sjögren’s. Studies suggest that certain genetic factors increase the risk of producing antibodies that lead to autoimmune conditions — Sjögren’s included — but they haven’t figured out why certain people develop them, says Sara McCoy, MD, a board-certified rheumatologist with UW Health in Madison, Wisconsin.
Whether you have primary or secondary Sjögren’s syndrome, the possible symptoms are the same — but that doesn’t mean the disease is necessarily easy to spot. Signs of Sjögren’s syndrome can mimic other conditions, are sometimes vague, and each patient can experience them differently, which makes it hard to pin down. Here, we list some of the possible signs of Sjögren’s syndrome to be aware of.
1. Your eyes feel dry
You might chalk up dry eyes to air quality, allergies, or trouble with your contact lenses, but it’s also one of the main symptoms of Sjögren’s syndrome. The immune system starts attacking glands that produce tears, so they aren’t able to produce moisture like they should.
“Dry eyes would need to be recurrent, daily, and persistent for at least three months,” says Dr. McCoy. Your eyes might feel an itchy, sore, or burning sensation, or feel as if there’s something in your eye that can’t be rubbed out.
2. Your mouth is dry, no matter how much water you drink
Dehydration is a common cause of dry mouth, but the sensation is also a telltale sign of Sjögren’s. The immune system also attacks glands involved with saliva production, which makes you need to constantly reach for drinking water. It can be particularly noticeable when you’re eating — you might feel like dry foods like crackers get stuck in your throat, especially if you don’t wash it down with water. Even the taste of certain foods might change due to having less saliva present. Even when you’re not having a meal, “cotton mouth” might make your voice sound hoarse, and the corners of your mouth could become dry and sore.
3. You have dental problems
Even if you’re diligent about brushing and flossing, a lack of saliva could leave you vulnerable to a slew of dental issues. “Saliva has a bacteriostatic effect,” says Dr. McCoy. “It doesn’t kill bacteria, but it prevents them from replicating.” Not only is there less saliva protecting your mouth, but the saliva that remains isn’t as protective as the saliva in a healthy person’s mouth, she adds. Some Sjögren’s syndrome patients will get gingivitis or tooth decay; others might notice mouth ulcers or a fungal infection that turns the tongue red or white.
4. You wake up feeling aches and pains
Sjögren’s syndrome is a systemic disease, which means that it can affect all parts of the body — not just moisture production. Arthritis is another of the most common symptoms. Those with secondary Sjögren’s might already be experiencing joint pain from their related rheumatoid arthritis or lupus, but pain can also occur independently of those other conditions in primary Sjögren’s syndrome patients. Typically, the pain strikes in small joints like the fingers, wrists, and ankles, though the tenderness and swelling can also show up in the knees, shoulders, and hips.
5. You have vaginal dryness
Because Sjögren’s syndrome often develops after the age of 40, you might chalk up vaginal changes to perimenopause or menopause. But Sjögren’s syndrome can aggravate the thinning and inflammation of vaginal walls that your body naturally experiences as estrogen levels drop with age. This can lead to painful sex, a burning or itching sensation, and an increase in vaginal discharge. A small study of 30- to 68-year-old women published in the Archives of Rheumatology found that those with Sjögren’s had more vaginal pain and lower levels of lubrication, arousal, satisfaction, and orgasm than their healthy counterparts.
6. Your skin is dry and itchy
When your glands aren’t able to create moisture, you might also feel changes in your body’s largest organ: the skin. Unless you use heavy moisturizers and take extra steps to lock in hydration, Sjögren’s can cause your skin to feel rough and itchy. You might also notice an eczema-like rash, which is likely more related to underlying autoimmune problems as opposed to the body’s moisture production, says Dr. McCoy.
7. You’re always tired
This isn’t that lack-of-shuteye sleepiness you experience after a late night. Even if you get enough sleep, autoimmune conditions like Sjögren’s can cause fatigue, which makes your whole body feel exhausted, physically and mentally. Part of it could have to do with active inflammation wearing your body out, but you might also feel extra-tired if symptoms — such as getting up at night to drink water for your dry mouth — have been keeping you from a good night’s rest.
8. You have a cough that isn’t going away
About 40 to 60 percent of people with Sjögren’s experience a chronic cough. “For one example, saliva buffers against heartburn reflux,” says Dr. McCoy. Without enough saliva protecting against acid reflux, you might get a dry cough when you lie down at night. Sjögren’s can also increase the risk of asthma and make the body more sensitive to triggers like tobacco smoke and pollution. Less commonly, the autoimmune problems can spread to the lungs and trigger pulmonary disease.
9. Your glands are enlarged
In some Sjögren’s patients, the major salivary gland located near the jaw could be visibly larger. Touching your face in front of the ear, you might notice your glands feel swollen, and it could even give that “chipmunk cheek” look.
10. You keep getting brain fog
You might find your short-term memory seems to be slipping, or you’ve been having trouble concentrating — which is important to bring up to your doctor. “The most important thing is you want to make sure there’s nothing else driving it,” says Dr. McCoy.
11. Your nerves feel funny
In addition to affecting your glands and joints, Sjögren’s can also occasionally travel to the nervous system. Some patients develop neuropathy, which means the peripheral nerves — the ones that connect to the rest of your body to your spinal cord and brain — are inflamed or damaged. It’s especially common in the hands and feet; symptoms can range from feeling numb or weak to burning or cold.
What to Do if You Suspect Sjögren’s
Do those symptoms sound familiar? If so, talk to your doctor; your primary care doctor may refer you to a rheumatologist for more testing. There’s currently no FDA-approved medication for Sjögren’s syndrome, but there are things you can do to manage the symptoms. For instance, if over-the-counter eye drops aren’t effective enough, you could get prescription drops or wear special glasses that help your eyes retain moisture. Drinking more water and using saliva-stimulating products can relieve dry mouth.
You can manage arthritis symptoms with non-steroidal anti-inflammatory drugs (NSAIDs) or disease-modifying drugs to treat your inflammatory arthritis. Your doctor can also recommend lifestyle changes like exercise and sleep to help clear up brain fog. “Right now, it’s just trying to maintain function as much as possible,” says Dr. McCoy.
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