The Sjogren’s & Dysautonomia Connection Doctors Often Miss (POTS, Dizziness, Fatigue)
If you have Sjogren’s Disease and are dealing with dizziness, fainting, digestive issues, or feeling like your body’s thermostat is broken, this article could be life-changing. Or perhaps you experience these symptoms and wonder what could be driving them.
As an allergist/immunologist, and a fellow patient living with both Sjogren’s Disease and dysautonomia (my blood pressure does annoying things when I try to have fun!), I’m speaking from both professional and personal experience. For years, my own seemingly unrelated symptoms – racing heart upon standing, dizziness if I stood still too long, chronic digestive issues, temperature intolerance – were often dismissed. I’ve seen countless Sjogren's patients told their dizziness is just dehydration, their digestive problems are just IBS, or their fatigue is "just fibromyalgia."
But there’s often a more specific explanation, and more importantly, treatments that can help. Dysautonomia, or the misfiring of your autonomic (automatic) nervous system, affects a significant number of people with Sjogren’s. It's not a separate condition; it's often a direct result of the same autoimmune inflammatory processes affecting other parts of your body. Let’s unpack what’s really happening and why understanding this connection can transform your approach to treatment.
What is Dysautonomia? Your Body’s Autopilot Gone Haywire
Think of your autonomic nervous system as your body’s autopilot. It controls all the things you don’t consciously think about: heart rate, blood pressure, digestion, temperature regulation, and sweating. It has two main branches – sympathetic (fight or flight) and parasympathetic (rest and digest) – which usually work in a choreographed dance to keep your body running smoothly.
In dysautonomia, this dance becomes chaotic. In Sjogren’s, the same autoimmune process that attacks salivary and tear glands can also affect the nerves controlling these autonomic functions. It’s like a computer virus affecting the entire operating system, not just one program. This explains why so many Sjogren’s patients experience symptoms seemingly unrelated to dryness. My own journey reinforced this – I struggled to understand how Sjogren's, which was "just" causing dry eyes and mouth, could affect my heart rate, digestion, or temperature.
The Science: How Sjogren’s Affects Your Nerves
The research connecting Sjogren’s and dysautonomia is fascinating. Autonomic problems in Sjogren’s often don't correlate with the severity of dryness or glandular symptoms. You might have mild dry eyes/mouth but significant neurological or autonomic dysfunction, or vice versa. This tells us it's not just about gland destruction.
Your immune system produces autoantibodies that can directly target autonomic nerve fibers and receptors (specifically muscarinic M3 receptors). These autoantibodies are like keys opening the wrong locks throughout your body, interfering with nerve signals that control your heart rate, blood pressure, digestion, and temperature. This is why dysautonomia in Sjogren's can respond to immunomodulatory therapy – we're not just treating symptoms; we're addressing the underlying autoimmune process.
Common Dysautonomia Symptoms in Sjogren’s
When you know what to look for, you’ll see dysautonomia far more often in Sjogren’s patients. I certainly didn't realize these connections when I was experiencing them myself!
Orthostatic Issues: Symptoms when changing position (lying to standing). Orthostatic intolerance (what I deal with) includes lightheadedness, dizziness, racing heart, feeling faint, and worsening in hot weather or after hot showers. Orthostatic hypotension (blood pressure drops significantly upon standing) or Postural Orthostatic Tachycardia Syndrome (POTS) (heart rate jumps by 30+ bpm upon standing, usually with normal blood pressure) are more severe forms.
Gastrointestinal Dysautonomia: Beyond dry mouth, the autonomic nervous system heavily controls digestion. Symptoms include gastroparesis (slow stomach emptying), nausea (worse in morning or with position changes), bloating, chronic constipation, alternating diarrhea/constipation (like IBS), and severe post-meal bloating.
Temperature & Sweating Problems: Your body’s thermostat is controlled autonomically. You might experience heat intolerance, excessive sweating, or the inability to sweat. Before my diagnosis, I went through a period where I couldn't get warm, even bundled up in the Midwest winter – my thyroid was fine, but it was severe temperature dysregulation.
Bladder & Urinary Issues: Urgency, frequency, incomplete bladder emptying, or incontinence can stem from autonomic dysfunction.
Overwhelming Fatigue: This isn't "just being tired." It's a bone-deep exhaustion that doesn't improve with rest. When your autonomic nervous system isn't working properly, your body works much harder to maintain basic functions.
If you’re reading this list and thinking, "That's me!" – you're not alone. These symptoms cluster together much more frequently in Sjogren's patients than in the general population.
Diagnosing Dysautonomia: Beyond the Basics
Ideally, diagnosis involves specialized testing, often done by neurologists or cardiologists:
Tilt Table Test: The gold standard for diagnosing orthostatic intolerance and POTS.
Heart Rate Variability (HRV) Testing: Measures how well your autonomic nervous system controls your heart rate. (My Oura Ring tracks my HRV, and I see how it's affected by sleep, alcohol, and exercise!).
Sweat Testing (QSART): Assesses your body’s temperature regulation through sweating, often helpful for small fiber neuropathy.
Gastrointestinal Motility Studies: Show if your digestive system is moving food properly.
What you can do at home: Check orthostatic vital signs (heart rate and blood pressure lying down, then immediately and several minutes after standing up). Significant changes can suggest issues. Always discuss this with your medical team before trying it at home to prevent injury. Symptom tracking with a health wearable can also be very helpful.
Finding the Right Medical Team
It's critical to find a physician who understands both Sjogren's and dysautonomia. This might be a rheumatologist with autonomic expertise (like my friend Dr. Brittany Panko!), a neurologist specializing in autonomic disorders, a cardiologist specializing in POTS, or a gastroenterologist who understands GI motility issues. Occasionally, an allergist/immunologist with a focus on these complex conditions (like me!) can also be key.
Don't be discouraged if your first doctor doesn't understand this connection. This isn't yet widely taught in medical schools. Organizations like the Sjogren's Foundation and Dysautonomia International are working hard to train physicians and build better toolkits.
Stay Tuned for Part 2: Treatment Strategies!
My next video will dive deep into treatment strategies for Sjogren's and dysautonomia. We'll cover a holistic, multimodal approach to address both the underlying autoimmune process and the symptoms. Subscribe so you don't miss it!
Dysautonomia and Sjogren's do not mean you cannot live a full, active life. It means you have to be smarter about how you manage your body and advocate for appropriate care. Understanding this connection and getting proper treatment has made a world of difference in my quality of life. When you treat it comprehensively, addressing both the autoimmune component and symptom management, so many patients see significant improvement.
What are your questions about dysautonomia or Sjogren's? If you’ve experienced these connections, share your story in the comments below – your experience might help someone else realize they’re not alone!
