Sjögren’s can affect all parts of the body, including the nervous system. For some people, Sjögren’s affects their autonomic nervous system (ANS) — the part of the nervous system that controls body processes that you don’t have to think about, like making your heart beat or regulating your body temperature. When the ANS is impacted by Sjögren’s, it can cause a problem called dysautonomia (also called autonomic dysfunction). Dysautonomia is a general term for when the autonomic nervous system isn’t working as it should.
Signs and Symptoms of Dysautonomia in Sjögren’s Disease
Dysautonomia can cause a range of signs and symptoms — and not everyone has the same symptoms.
Signs and symptoms associated with dysautonomia may include:
- Heart rate and blood pressure problems, including dizziness or fainting
- Problems with the muscles in the esophagus (the tube that carries food from the mouth to the stomach) and digestive tract
- Bladder problems, such as urinating more than normal or not being able to hold urine
- Problems with moisture glands throughout the body, including the tear ducts, salivary glands, and glands that produce mucus
- Vision problems, including blurry vision or problems with the pupils opening and closing to adjust to changes in brightness
- Breathing problems, such as shortness of breath
- Problems with regulating the body temperature, including not sweating enough to stay cool or sweating too much
- Brain fog
- Trouble keeping your balance
- Sleep problems, like trouble falling or staying asleep, or not feeling rested after waking up
Keep in mind that it can be difficult to know if certain symptoms are caused by autonomic dysfunction or because a specific organ is being impacted by Sjögren’s.
When certain dysautonomia signs or symptoms happen together, doctors may recognize them as a specific syndrome or disorder. For example:
- Orthostatic intolerance (OI): When a person experiences symptoms such as dizziness, feeling faint, blurry vision, or lightheadedness when they stand or sit up. OI symptoms usually go away or get better when a person lies down. POTS (postural orthostatic tachycardia) is a type of OI that some people with Sjögren’s have that may cause symptoms like significant and sustained dizziness, shortness of breath, or a racing heartbeat.
- Gastrointestinal dysmotility: When muscles along the gastrointestinal (digestive) tract don’t move food through the tract as they should. This can cause symptoms like nausea, vomiting, feeling full without eating very much food, constipation, stomach pain, or diarrhea.
- Autonomic neuropathy: When nerves that are part of the ANS are damaged. Autonomic neuropathy can cause a range of symptoms (for example, sweating more than normal or not enough, dizziness, or trouble swallowing), depending on which nerves are impacted. One type that Sjögren’s patients may experience is called small fiber neuropathy. Small nerve fibers help gather information about pain and temperature and send it to the brain and can be involved in symptoms like lightheadedness, pain or lack of pain, and sweating abnormalities.
Like other nervous system manifestations of Sjögren’s disease, dysautonomia may be underrecognized in the Sjögren’s community. That means more people with Sjögren’s may have dysautonomia than have been formally diagnosed with the condition.
For some people, nervous system signs and symptoms — including dysautonomia — may be the first signs that they have Sjögren’s disease. In some cases, nervous system problems may happen years before other, more well-known Sjögren’s symptoms, like dry eye or dry mouth.
Causes of Dysautonomia in Sjögren’s Disease
Sjögren’s experts aren’t exactly sure what causes dysautonomia in Sjögren’s disease. Researchers are working to learn more about how the 2 conditions are related.
Based on research to date, experts believe that Sjögren’s disease may damage nerves that are part of the autonomic nervous system (ANS), including the vagus nerve, which carries signals between the brain, heart, and digestive system. Abnormal immune system activity associated with Sjögren’s may interfere with how these nerves function, leading to symptoms related to heart rate, digestion, or blood pressure.
Diagnosing Dysautonomia in Sjögren’s Disease
Dysautonomia can be a difficult condition to diagnose because its symptoms overlap with other conditions. Diagnosing dysautonomia usually involves ruling out other conditions that could be causing your symptoms. For example, infections or heart disease can cause some of the same symptoms as dysautonomia.
If you think you may have dysautonomia, it’s important to talk with your primary care doctor, a rheumatologist (a doctor who treats conditions like Sjögren’s), or a neurologist (a doctor who treats the nervous system) about your concerns. They may ask questions to learn about your symptoms, recommend tests to check how well your ANS is working, or do an exam.
Tests to check for dysautonomia depend on the symptoms you’re experiencing but could include:
- Tilt table test: For this test, a doctor will measure your heart rate and blood pressure as a device called a tilt table moves your body from a lying-down position to standing.
- Heart tests: These may include tests like an electrocardiogram (or ECG) that records your heart’s electrical activity.
- Sweat test: This test checks how well the nerves that signal your body to sweat are working.
- Pupillometry: This test measures the size of your pupils.
- Ultrasound: If your symptoms include bladder problems, your doctor may use this imaging test to check your bladder.
- Blood tests: These may include tests to check for antibodies that could be a sign of autoimmune disorders or to measure levels of neurotransmitters (chemicals that the nervous system uses to send signals).
Managing Dysautonomia in Sjögren’s Disease
There’s no cure for dysautonomia. But lifestyle changes or treatments can help you manage the symptoms and make it easier for you to go about your daily life.
Treatment options for dysautonomia depend on your specific symptoms. If you have dysautonomia, work with your doctor to make a treatment plan that works for you. Management may include:
- Medicines to treat Sjögren’s disease — If Sjögren’s is contributing to your dysautonomia, taking medicines to treat it can help improve your dysautonomia symptoms.
- Drinking plenty of water — Staying hydrated can help prevent big changes in your blood pressure, which may improve symptoms like dizziness or lightheadedness.
- Consuming more salt — Salt can also help prevent big drops in blood pressure, which can help if you have OI symptoms.
Get Support for Managing Sjögren’s Disease
Dysautonomia and other Sjögren’s disease symptoms can have a big impact on your daily life. If you’re living with dysautonomia and Sjögren’s, know that you’re not alone.
Remember to talk with your doctor about any dysautonomia symptoms you notice. They can help you manage these and other Sjögren’s symptoms.