Sjogren’s & Dysautonomia Treatment: A Doctor-Patient's Toolkit for Relief
As an allergist/immunologist and lifestyle medicine doctor, and maybe more importantly for this topic, a fellow patient, I'm navigating the unpredictable world of autoimmune disease. In this article, we’re continuing our deep dive into the connection many physicians miss: the link between Sjogren’s Disease and dysautonomia.
Today is all about action: What do we do? I have both Sjogren’s and dysautonomia, and for years I dealt with symptoms that seemed completely unrelated to my dryness – racing heart when I’d stand up, dizziness if I squatted down to play with my kids, chronic digestive woes, and temperature intolerance. I was living with all these symptoms while seeing patients and being a mom.
I've seen countless Sjogren's patients and dysautonomia patients told their dizziness is "just dehydration," their digestive problems are "just IBS," or their fatigue is "just part of having an autoimmune disease." But there are specific explanations, and more importantly, treatments that can help!
Beyond the Basics: Understanding Root Causes & Building a Plan
Sjogren’s patients are often affected by neurological problems, impacting nerves from the tiniest small fibers (at your fingertips!) all the way to your brain. So, we need to think about: Where are these issues originating? How can we turn down inflammation? And what practical strategies can we use to work with what our body is doing right now?
While we’re still working to fully understand the intricate science, the good news is we have many tools in our toolkit. Remember, you’ll always want to run any new strategies by your personal healthcare team, because even though I’m a doctor, I'm not your doctor in this context!
The Foundational Toolkit: Non-Medication Interventions
These are the core strategies, often yielding the most significant "bang for your buck" with lower risks. Many cardiologists and neurologists are on board with these:
Fluid and Salt Management: This often sounds counterintuitive, but for dysautonomia, we often recommend increasing fluid and salt intake (2-3 grams of salt, 2-3 liters of water daily), unless you have other conditions like heart or kidney issues that would prevent this. Electrolyte supplements can also be helpful, especially in hot weather or if you're dehydrated. Be mindful of alcohol and excessive caffeine, as they can worsen orthostatic symptoms (symptoms that occur when you change position).
Compression Garments: Compression stockings (20-30 mmHg) that go all the way up to your torso can significantly help return blood flow to your heart.
Positional Strategies: Take your time when changing positions. Don't jump out of bed. Move slowly, allowing your body to adjust.
Exercise and Movement: Starting with a graded approach is key, especially with a physical therapist or exercise physiologist. Begin with horizontal exercises (like a recumbent bike) and gradually build to upright activities. Focus on leg strengthening to improve blood return to your heart.
Medication Toolkit: Symptomatic Relief
Your healthcare team might consider adding medications to your regimen to manage specific symptoms:
For Blood Pressure/Heart Rate: Fludrocortisone (helps retain salt and water), Midodrine (constricts blood vessels), or Beta-blockers (regulate heart rate).
For Gastrointestinal Symptoms: Smaller, more frequent meals, avoiding high-fat or high-carb meals, and sometimes digestive enzymes.
For Neuropathic Symptoms: Low-dose Naltrexone (a newer tool that can downregulate inflammation and help reset neurological function), Gabapentin, or low-dose tricyclics. (These need thoughtful use, as some can worsen Sjogren’s dryness).
Targeting Immune Dysfunction: Deeper Treatments
For more severe or persistent symptoms, targeting the underlying immune process may be necessary:
Rituximab: Sometimes used for severe neuro-Sjogren’s, as it depletes B-cells (factories for autoantibodies).
Intravenous Immunoglobulin (IVIG): An increasingly explored option for severe autonomic neuropathy.
Disease-Modifying Anti-Rheumatic Drugs (DMARDs): Like hydroxychloroquine (Plaquenil), mycophenolate, or azathioprine. Corticosteroids can be used for acute flares.
New Treatments in the Pipeline: I’m incredibly hopeful about new medications in clinical trials specifically targeting Sjogren’s inflammation (like Nipocalimab and Dazodalibep). We’ll see if these also lead to improvements in neurological symptoms as follow-up data emerges!
The key is finding a healthcare professional who understands Sjogren’s and dysautonomia, or who is willing to learn. This knowledge isn't widely taught in medical schools yet, but organizations like the Sjogren's Foundation and Dysautonomia International are working hard to bridge this gap.
Creating Your Personalized Dysautonomia Plan
Managing dysautonomia in Sjogren’s is highly individualized. Here’s my approach:
Start with the Basics: These are foundational and often yield the most results. Raising the head of your bed (10-30%), graduated exercise programs, hydration, and salt management – these aren't "sexy," but consistent daily practice makes a monumental difference.
Layer in Symptomatic Treatments: Address your most troublesome symptoms first.
Be Patient & Experiment: It takes time and experimentation to find the right combination of strategies. Your plan will likely evolve over time.
Address Comorbidities: Optimizing overall health by addressing other conditions (allergies, sleep disorders, stress) can significantly impact your dysautonomia and Sjogren’s.
Having dysautonomia and Sjogren’s does not mean you cannot live a full, active life. It means you need to be smarter about how you manage your body and advocate for appropriate care. Understanding this connection and getting proper treatment has made a tremendous difference in my quality of life – as a partner, a parent, a daughter, and a physician. When we put all these puzzle pieces together, we can truly move the dial!
Daily Tips & How to Connect:
Plan your day around your energy patterns.
Stay ahead of your symptoms.
Educate your support system: Share this article with them!
Connect with others who understand: Join our free Facebook groups (links below)! You'll find others who understand the frustration of having symptoms dismissed and the relief of finally getting answers.
Your symptoms are real. They are connected. They are treatable. You deserve comprehensive care that addresses all aspects of your condition. Keep advocating for yourself, keep learning, and know that better days are possible with the right approach.
What are your questions about dysautonomia or Sjogren's? What strategies have helped you manage these symptoms? Share your experiences in the comments below – your story might help someone else realize they’re not alone!
