{"id":1398,"date":"2025-04-05T19:56:08","date_gmt":"2025-04-05T23:56:08","guid":{"rendered":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/?p=1398"},"modified":"2025-04-17T13:46:48","modified_gmt":"2025-04-17T17:46:48","slug":"your-dysautonomia-may-be-caused-by-sjogrens-disease-heres-why-that-matters","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/your-dysautonomia-may-be-caused-by-sjogrens-disease-heres-why-that-matters\/","title":{"rendered":"Your dysautonomia may be caused by Sjogren\u2019s disease. Here\u2019s why that matters."},"content":{"rendered":"

\"SjogrensManifestationsDIgraphic\"<\/a><\/p>\n

Sjogren’s is the second most common cause of autonomic neuropathy, and April is Sjogren’s Awareness Month, so we invited guest blogger Sarah Schafer, MD to share some information on Sjogren’s for the dysautonomia community.<\/em><\/p>\n

Your dysautonomia may be caused by Sjogren\u2019s disease.
\n<\/strong>Here\u2019s why that matters. <\/strong><\/h3>\n

I\u2019m a medical doctor with POTS and Sjogren\u2019s disease. It took years to get diagnosed, and I’m determined to make sure no one else goes through the ordeal I\u2019ve had to endure.<\/p>\n

I’ve had symptoms of both postural orthostatic tachycardia syndrome (POTS) and Sjogren\u2019s since I was a teenager. Though I felt increasingly unwell as I aged, I remained able to function until a sudden decline at 44, when extreme fatigue, lightheadedness, and other symptoms left me mostly bedridden. I lost my career, my ability to do things with my children, and almost everything else I loved to do.<\/p>\n

This was the early 2000s. My doctors never considered Sjogren’s, even though I had classic symptoms, including 25 years of specialty treatment for severe dry eyes. Neither they nor I knew much about Sjogren’s, and none of us had heard of POTS.<\/p>\n

After a year of normal tests, my doctors started downplaying my symptoms as being caused by stress or depression. I wasn’t depressed. My symptoms weren’t caused by stress; they were caused by Sjogren’s and POTS. I was stressed because I was severely ill and unable to get a proper diagnosis and care.<\/p>\n

Even though I\u2019m a doctor, I encountered the same dismissal and psychologization of my symptoms that many women face when doctors can\u2019t find a diagnosis. Fortunately, my medical knowledge enabled me to research scientific literature, which helped me figure out that I likely had Sjogren\u2019s and POTS.\u00a0 I then used my research to advocate with my doctors for a Sjogren\u2019s diagnosis, and later, to educate them about POTS.<\/p>\n

Although treatments have helped somewhat, they came too late for me to have the quality of life I could have had with earlier intervention.<\/p>\n

What is Sjogren\u2019s disease?
\n<\/strong>Sjogren’s is a serious autoimmune rheumatic disease that affects many body systems. Sjogren\u2019s is never<\/em><\/strong> just dry eye and dry mouth, even though that is how it was originally described.<\/p>\n

Sjogren\u2019s disease is a common cause of dysautonomia.
\n<\/strong>Most people with Sjogren’s disease have dysautonomia, which can cause a multitude of conditions such as POTS, orthostatic hypotension (OH), stomach, gut, and bladder problems, and unusual sweating. But most doctors don’t know much about dysautonomia and don\u2019t realize that many symptoms of Sjogren\u2019s disease are related to dysautonomia. If you have dysautonomia, you might also have Sjogren\u2019s.<\/p>\n

Why is it important to know if you have Sjogren\u2019s?
\n<\/strong>Sjogren\u2019s is a complex and unpredictable disease that frequently leads to a significant decline in quality of life, mainly related to fatigue and pain, not dryness. In some instances, especially if it’s not diagnosed and monitored closely, Sjogren’s can be life-threatening.<\/p>\n

Sjogren\u2019s disease can damage nerves, organs, and joints, sometimes without producing obvious symptoms. The only way to detect this silent damage is by monitoring Sjogren\u2019s patients for a wide range of systemic manifestations. Early detection of systemic (non-dryness) manifestations allows for timely intervention, when treatments are most likely to be effective. Contrary to what some doctors may tell you, there are treatments that help slow the progression of Sjogren\u2019s disease, make you feel better, and sometimes even save your life.<\/p>\n

Early symptoms of Sjogren’s disease
\n<\/strong>Sjogren’s affects everyone differently. While doctors are taught to look for dry eyes and mouth as signs of Sjogren’s, most people seek a diagnosis because of other symptoms like fatigue, cognitive problems, and pain, not dryness. And dry eyes and mouth aren’t always present, especially in people with neurological problems like dysautonomia.<\/p>\n

Doctors often overlook lightheadedness (due to POTS or OH) and painful neuropathy as early Sjogren’s symptoms. Other common early symptoms include severe fatigue, widespread pain, cognitive dysfunction (or “brain fog”), severe headaches, difficulty swallowing or digesting, joint and muscle pain, a persistent cough, shortness of breath, and Raynaud’s phenomenon.<\/p>\n

It’s possible to have many of these symptoms, or none of them. Since most doctors aren\u2019t trained to recognize all the different ways Sjogren’s can show up in the body, they frequently mistake it for fibromyalgia, irritable bowel syndrome, anxiety, or functional neurological disorder (FND).\u00a0\u00a0
\n<\/strong><\/p>\n

Why is Sjogren\u2019s diagnosis missed or late?
\n<\/strong>Extreme delays in Sjogren’s diagnosis are common because clinicians receive minimal education about Sjogren\u2019s disease. The limited information they\u2019re provided is often inaccurate and outdated. Many medical educators perpetuate the misconception that Sjogren’s is a rare, unimportant dryness syndrome, primarily affecting middle-aged women.<\/p>\n

The reality is that:<\/strong><\/p>\n