Sneaky Sjogren’s: Commonly Overlooked Symptoms That Delay Diagnosis and Treatment

Sjogren’s is a master of disguise—it doesn’t walk into the doctor’s office wearing a big flashing “CALL ME SJOGREN’S” sign. It tiptoes around and spreads its symptoms across different body systems. Forcing specialists to play medical hide-and-seek (and many providers aren’t good at that game).

Most people know Sjogren’s for its poster children: dry eyes and dry mouth. Those are the ones that get all the press. But for many of us, the dryness part doesn’t even show up until years later, or isn’t even our worst symptom. The real chaos happens behind the scenes, like fatigue, brain fog, and joint pain that commonly hide from tests and labs.

But it is the commonly overlooked symptoms that can really blow up your life. Symptoms like…

• Numbness, burning, or tingling in your feet or hands could be small fiber neuropathy.
• Standing up and suddenly feeling like your body forgot how to regulate blood pressure is pesky dysautonomia (and Sjogren’s is actually the second leading cause).
• Chronic bloating, constipation, or slow stomach emptying may be gastroparesis.
• Urgency or pain with urination that’s not an infection? That could be interstitial cystitis.
• And if your fingers turn blue or white when it’s cold, that’s Raynaud’s phenomenon, another Sjogren’s companion.
• And many more!

And because each one sends you to a different specialist, the dots rarely get connected. My gosh, I remember the frustration and outrage like it was yesterday. A neurologist might treat your neuropathy, a GI doctor might focus on your digestion, and a urologist might shrug and hand you cranberry pills. Meanwhile, the big picture—Sjogren’s—is hiding in plain sight. Sneaky little jerk.

That’s how people end up spending years ping-ponging between providers. It is medical limbo, and it’s exhausting. The problem is that most providers aren’t taught to recognize the pattern that spans multiple departments. Too many still just think it is a nuisance dryness condition and not a serious, systemic disease.

If this sounds familiar, please know you’re not alone. Sjogren’s can take years to diagnose, but the earlier you understand what’s going on, the faster you can advocate for different doctors, better tests, and more appropriate treatments.

This is exactly why I created the course Streamlining Sjogren’s: How to Navigate Your Path to Diagnosis and Treatment. It’s a roadmap for cutting through confusion, understanding your symptoms, and learning how to advocate like a pro at your next appointment. You’ll get practical scripts, symptom checklists, and guidance from me and Dr. Sarah Schafer of SjogrensAdvocate.com.

And since we could all use a win this season, use code HEALTHYHOLIDAY for 20% off your purchase through the end of the year. Head to resources.littleenginepatientadvocacy.com