What is it like living with Sjögren's disease? | Inmunidad Consciente Podcast

Cristina Montoya, RD
Sep 14
5 min read

Welcome to Inmunidad Consciente, the first Spanish-language space where we open a dialogue about autoimmune diseases, co-hosted by my colleague Carlos Ferragut.

We both share a deep passion for anti-inflammatory nutrition and gut health for autoimmune rheumatic diseases. We also live with them!

In this first episode of Inmunidad Consciente, we explore my story (Cristina Montoya) with Sjögren’s and rheumatoid arthritis.

I wanted to provide you with a summary of this touching episode. Thank you for supporting our channel, and please share our videos with anyone who speaks Spanish and might benefit from our discussions.

🧠 Understanding Sjögren’s Disease: Beyond Dryness

Formerly known as “Sjögren’s syndrome,” 2024 marked a crucial milestone: it was finally recognized as a disease. This autoimmune rheumatologic condition goes far beyond dry eyes and mouth.

While it attacks glandular tissue affecting tear and saliva production, it can also impact other epithelial tissues like the skin and—more worryingly—internal organs.

The previous classification of “primary Sjögren’s” (not associated with other autoimmune diseases) and “secondary Sjögren’s” (associated with others) has evolved.

We now understand that Sjögren’s has many systemic manifestations and can attack any organ, with the neurological system and lungs being especially vulnerable. In my case, the gastrointestinal system has been heavily affected.

Classic symptoms like dryness in the eyes, mouth, and skin are accompanied by profound fatigue and muscle and joint pain, classifying it as a rheumatologic disease.

A lesser-known aspect is seronegative Sjögren’s, where diagnostic antibodies are absent.

These individuals, often with more neurological symptoms than dryness, face even delayed diagnoses and are frequently misdiagnosed with fibromyalgia.

This highlights the importance of education and research—like the rheumatology conferences I attend—to advance understanding of this complex disease.

Visit Sjögren's Advocate to learn more about Sjögren's complex systemic manifestations

💪 My Personal Sjögren and RA Story: A Journey of Resilience

My symptoms began in childhood, but sadly, years ago, knowledge about Sjögren’s was nearly nonexistent.

At age five, my mother started taking me to the ER for gastrointestinal issues.

At eight, I began suffering from “mumps” every six months—recurring salivary gland inflammation misdiagnosed as infections.

By ten, dry eyes and mouth joined my constant digestive problems.

I shared my childhood Sjögren story with Take A Check Pain When a Child Can’t Cry, Don’t Turn a Blind Eye

The diagnosis finally came at age 21, when rheumatoid arthritis flared up with unbearable force.

A family doctor, seeing the full spectrum of my symptoms, suspected Sjögren’s, and a rheumatologist confirmed it through lab tests, a lip biopsy, and eye exams.

Ironically, although Sjögren’s symptoms appeared first, I was initially diagnosed with secondary Sjögren’s.

At that time, the impact of rheumatoid arthritis was so intense that Sjögren’s didn’t seem as devastating.

At 21, in my final year of university, the pain was so severe that my mother had to dress me, brush my hair, and feed me.

The rheumatologist even predicted I’d be in a wheelchair by 40. The focus was on controlling the pain and inflammation from rheumatoid arthritis. Thanks to the advancement in therapies, I'm still physically functional.

🩺 Treatments and Daily Management: A Lifelong Routine

Today, for rheumatoid arthritis, I use a biosimilar, methotrexate, and prednisone, which I’ve taken for 20 years.

For Sjögren’s, I’ve tried treatments like hydroxychloroquine and pilocarpine. While pilocarpine stimulated secretions, side effects like excessive sweating and digestive issues forced me to stop.

It’s frustrating that even in 2025, many treatments for Sjögren’s are “borrowed” from other diseases, like hydroxychloroquine and methotrexate.

They help manage symptoms, but we need more targeted therapies. Thankfully, over 20 clinical trials are underway, giving me hope.

Sjögren’s symptoms—especially dryness—require constant management. My eyes are so dry that my tear ducts were cauterized, and extreme dryness can cause retinal detachment.

When I recorded this episode, my eyes were severely affected by Sjögren's.

Dry mouth is equally critical, as saliva plays a crucial role in protecting the oral cavity and teeth. Its absence leads to severe dental deterioration, constant cavities, and tooth loss—frustrating and costly, especially since insurance doesn’t cover these treatments.

Add to that the profound fatigue, which has no direct treatment, forcing us to find alternative coping strategies.

🌿 My Daily Life with Sjögren’s and RA

My daily routine is strict to manage symptoms. Upon waking, eye drops and brushing my teeth are essential.

A glass of water with psyllium fibre ensures intestinal function. My diet consists of soft foods—I can’t tolerate dry items like crackers or chips—so I rely on smoothies and soups.

Discover how to implement an anti-inflammatory diet for Sjögren's disease.

Hydrating my skin with coconut oil and protecting my lips with a gel made from olive oil and beeswax are key steps.

Exercise is my ally against fatigue and the “brain fog” caused by Sjögren’s. Though it may seem contradictory, movement—even stretching—helps clear the mind.

My morning routine includes going to the gym or taking a walk. I take hourly breaks, step away from screens, and move around. I try to keep set meal times to regulate energy levels and take my medications on schedule.

Oral hygiene is a challenge. After each meal, I rinse with baking soda and xylitol—crucial because the lack of saliva makes the mouth highly acidic.

You shouldn’t brush immediately after eating; you should wait 30 minutes. But for someone with Sjögren’s, it’s even more aggressive.

At night, the routine repeats: rinse, gentle brushing with low-foam toothpaste, fluoride rinse, and if needed, coconut oil in the mouth and gel in the eyes to prevent nighttime dryness. It’s not easy, but it’s vital.

🫂 Reflections and Final Advice: Resilience, Strength, and Community

Living with a chronic, incurable, and unpredictable diseases like Sjögren’s and rheumatoid arthritis deeply affects mental health.

Depression and anxiety are common, which is why a strong support network is essential.

My mother has been my rock since diagnosis, and my husband in Canada supports me in everything—from cooking to my initiatives to help other patients.

Community—family, friends, and partners—is vital to get through each day.

This disease has taught me an invaluable lesson: “You don’t know how strong you are until being strong is your only option.”

These diseases have made me stronger as a person, helping me focus less on body image and more on maintaining a healthy lifestyle that allows me to move and play with my child.

But above all, connecting with other autoimmune patients brings me joy.

Knowing my story can help someone feel understood and find a way to live with their illness—without being defeated by it—drives me forward.

Final Thoughts

My final advice for those living with Sjögren’s: keep sharing your stories and amplifying your voice.

Despite its recognition as a disease, many healthcare professionals still minimize it as a “dryness syndrome.”

Educate yourselves through reliable sources like patient associations:

Sjögren Canada, Sjögren Europe, Sjogren's Ireland, and more recently, Sjogren's Australia are excellent resources. Explore these communities for evidence-based education and mutual support.

Thank you for listening and for being part of this community. Please support us, follow us on Instagram and YouTube.

Your support and questions are essential to continue spreading this vital information en Español. Thank you all, and have a beautiful day!

Carlos Ferragut @nutritionaltrainer

Cristina Montoya en TikTok @arthritisdietitian (Español)