Fatigue: The Top Unmet Need

Fatigue - Part 1 This is the first post in a series dedicated to fatigue, which patients often describe as their most disabling Sjogren’s symptom. The goal of this blog series is to help you work with your doctors to create an individualized fatigue management strategy.

Don’t miss out on the self-advocacy resources at this post.

What is Sjogren’s Fatigue?  

Fatigue is a core systemic feature of Sjogren’s disease, affecting 70% to 96% of patients (240, 268, 279). It is defined as “an overwhelming sense of tiredness, lack of energy and feeling of exhaustion" (88). This is a pathological (illness-driven) state; it is not the same as normal tiredness from physical exertion or sleep deprivation. Sjogren’s fatigue does not resolve with rest, self-care, or a weekend off. It is often unrelenting, unpredictable, and impossible to fully control through lifestyle alone.

Kathy Hammitt, of the Sjogren’s Foundation captures the experience perfectly when she describes Sjogren’s fatigue as an “overwhelming engulfing, earthshattering, toxic, bone-tired, draining of life force, and feeling crumpled like a pile of laundry” (161). 

Fatigue is the Top Unmet Need    

Doctors are taught that dryness is the main (and sometimes the only) patient concern. But studies consistently reveal fatigue, not dryness, to be the primary cause of diminished quality of life and loss of function in Sjogren’s (27,198, 279).

Patient surveys consistently identify fatigue as their top concern because it is what keeps many patients from living a normal life.  While fatigue severity varies from patient to patient, it is usually life-altering. For many, fatigue is extreme and devastating. It impacts everything from parenting and exercise to traveling and seeing friends. It also makes working very difficult. Many people have to work fewer hours; 30-47% are forced to stop working entirely (47, 94).  These challenges often strain family life at a time when patients feel unsupported by friends, family, and even healthcare providers who continue to believe the myth that Sjogren’s is merely a "mild dryness" disease.

Why is it so Difficult to Find Help for Fatigue?

The short answer: Doctors are not given the time, resources, or training to address this complex problem. Fatigue is invisible and cannot be measured by lab tests. Managing it is time-consuming and often requires a trial-and-error approach. Because it is difficult to evaluate, it is often ignored, downplayed, or misattributed to anxiety, depression, or fibromyalgia. People with debilitating Sjogren’s fatigue are often given no real help, but instead told to lose weight, exercise, or do more yoga.While the failure to address fatigue is common across many chronic illnesses, the gap is particularly wide in Sjogren’s. On average, Sjogren’s patients experience more severe fatigue than those with lupus or rheumatoid arthritis (99, 187). Despite this, many doctors remain unaware of extreme fatigue that the impact because they were taught that Sjögren’s is merely a "nuisance dryness disease."

Self-Advocacy: Getting Better Care for Fatigue

Patients often need to advocate for their own fatigue management.

Upcoming posts in this series will explore why clinical gaps in fatigue management exist. You will find information and strategies to help your doctor identify and treat your fatigue more effectively.

This series will address:

• The Many Faces of Fatigue: The different types of fatigue experienced by Sjögren’s patients and what we currently know about their causes.

• The Biological Basis: Evidence that fatigue is a systemic, biological (physical) feature caused directly by Sjogren’s and Sjogren’s comorbidities.

• Essential Screening: Which potential causes of fatigue should be routinely screened for, regardless of your specific symptoms?

• Identifying Red Flags: Specific signs and symptoms that can help point you and your doctor toward areas that call for further testing.

• Effective Communication: How to describe your fatigue—including its quality, triggers, and impact on function—using concrete examples and advanced preparation.

• Debunking Myths: Common misconceptions about Sjogren’s fatigue and how to counter them with information backed by the peer-reviewed literature.

• Management Strategies: A look at both medical interventions and lifestyle adjustments.

Self-Advocacy Tools

 1. Review Myths #6 and #7 on the MYTHS ABOUT SJOGREN’S page. I especially recommend sharing Kathy Hammitt’s article, as instructed under item 1 on Myth #6.

2. Kristina Kelly’s Mini-Course: Getting the Most Out of Your Appointments.  Careful preparation and strategic messaging can make a significant difference in being heard. This is especially important when addressing fatigue.

   
   

Credit: Emanuel Abreu, Unsplash