Sjogren's: Why Diagnosis and Treatment Can Be So Tricky (and What to Do About It)

Sjogren’s Disease. It’s a puzzle, a maze, a medical merry-go-round. If you’ve been searching for answers, feeling dismissed, or bouncing between specialists, you’re not alone.

As both a physician and a Sjogren’s patient, I understand this frustrating journey firsthand. It took years for me to get my own diagnosis, even with my medical background!

In this article, we’ll unpack why Sjogren’s is so challenging to diagnose and treat, and –– more importantly –– empower you to take control of your health journey.

Sjogren's: The Diagnostic Puzzle

Why is Sjogren’s so difficult to pin down? It's a combination of factors:

1. Symptom Diversity: Sjogren's isn't just dry eyes and dry mouth (though those are common). It can manifest in a myriad of ways: bone-deep fatigue, pain (often centered in the low back), brain fog, digestive issues, skin problems, nerve pain – the list goes on! Plus, these symptoms can fluctuate dramatically. They’re not always linear. For instance, my back pain always improved during pregnancy!

2. The Invisible Illness: Sjogren’s is often invisible to others. You might look fine, even while struggling with debilitating symptoms. This can lead to skepticism from family, friends, and even healthcare providers.

3. Symptom Overlap: Sjogren's symptoms mimic other conditions, like fibromyalgia, chronic fatigue syndrome, lupus, rheumatoid arthritis, even anxiety and depression. This makes diagnosis challenging!

4. Knowledge Gaps in Medical Education: Doctors receive minimal training on Sjogren’s, focusing mainly on dryness and a few lab tests. They miss the nuances, like the neurologic implications, which are huge. My own Sjogren's education has come from patients and resources like the Sjogren’s Foundation.

Diagnosing Sjogren’s: Looking at the Whole Picture

It’s vital to take a comprehensive approach:

• Thorough History & Physical Exam: This isn’t just about checking for dryness; it’s about evaluating how Sjogren’s might be affecting your entire body.

• Objective Tests:

  • Eye Tests (Schirmer’s Test): Measure tear production.

  • Salivary Gland Function Tests: Quantify dry mouth.

  • Bloodwork: Check for antibodies (SS-A/SS-B) and inflammatory markers. I also use the early Sjogren’s antibody profile.

  • Imaging: Salivary gland ultrasound can reveal inflammation.

  • Biopsy: A minor salivary gland biopsy (from the lip) might be necessary.

Even with tests, there can be an overemphasis on dryness. My goal as a clinician is to use all available information to connect the dots!

Why the “Wait and See” Approach Doesn’t Work

Many doctors take a “wait and see” approach with Sjogren's. This can be problematic because Sjogren’s is progressive. Untreated inflammation causes damage, increasing the risk of complications. Early intervention and preventive measures are key.

A Proactive & Balanced Approach to Sjogren’s Care

You shouldn’t suffer while waiting for a definitive diagnosis! A balanced approach, starting with lifestyle changes and incorporating medication when needed, is often best.

Building Your Sjogren’s Healthcare Team

Managing Sjogren’s is a team effort! Ideally, your team includes a rheumatologist, ophthalmologist, dentist, primary care doctor, and other specialists as needed. Choose providers knowledgeable about Sjogren’s –– or willing to learn!

Sjogren's Treatment Options: A Holistic Perspective

Treatment should be comprehensive and personalized:

• Symptom Management: Artificial tears, oral moisturizers, medications.

• Systemic Treatment: Anti-inflammatory meds, immunosuppressants, biologics, clinical trials.

• Lifestyle: Diet, exercise, stress management, and self-care practices.

You’re Not Alone! Find Support and Connection

Join my free Facebook group, the Success with Sjogren’s Sisterhood, and download my Sjogren’s Superhero Starter Kit!

I’m also accepting new patients at my telehealth practice! 

LEARN MORE HERE

What’s been your biggest challenge with Sjogren's?

Share your story in the comments!