Crushing Fatigue & Brain Fog: Must-Know Insights from Rheumatic Disease Experts | ACR 2024 with Deb

At the ACR 2024 conference, patient advocate Eileen Davidson, widely known as Chronic Eileen and serving as AiArthritis’ Educational Media Assistant, moderated an impactful session focused on shedding light on often-overlooked symptoms of rheumatic diseases. Featuring a multidisciplinary panel, this session included contributions from a rheumatologist, occupational therapist Cheryl Crow, arthritis dietitian Cristina Montoya, physiotherapist Daniel, and psychologist and researcher Dr. Susan Bartlett from McGill University. Together, they explored the broader impact of rheumatic diseases, emphasizing symptoms that remain neglected in standard medical care.

Here are the key takeaways:

Fatigue: The Overlooked Burden

What It Is: Fatigue is one of the most common and debilitating symptoms of rheumatic diseases, but it is often misunderstood or dismissed during medical consultations.

Expert Insights: The panel stressed that fatigue is not just “feeling tired”—it is a relentless, physical and mental exhaustion that is not relieved by rest. Many patients are told to simply "power through," but experts emphasized the importance of personalized management strategies. Addressing fatigue is not a one-size-fits-all approach—it requires understanding the underlying causes, like inflammation, sleep disturbances, or medication side effects.

Why It Matters: Better fatigue management could enable patients to improve their quality of life by restoring energy for work, family, and social engagements.

Cognitive Impairment (Brain Fog): The Invisible Challenge

What It Is: Brain fog affects countless patients with rheumatic diseases, making it difficult to concentrate, recall information, or make decisions.

Expert Insights: The panel noted that many clinicians overlook this symptom because it is less tangible than joint pain or swelling. However, it profoundly affects day-to-day life, from completing work tasks to managing household responsibilities. They advocated for raising awareness among healthcare professionals to recognize brain fog as a genuine and significant issue.

Why It Matters: By addressing brain fog, patients can regain confidence in their cognitive abilities and better manage the complexities of living with a chronic illness.

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Mental Health: Prioritizing Emotional Well-Being

What It Is: Depression and anxiety are common in patients with rheumatic diseases due to the emotional toll of chronic pain and fatigue. Unfortunately, mental health concerns are often sidelined during brief medical appointments.

Expert Insights: Dr. Susan Bartlett underscored the importance of integrating mental health care into routine rheumatology visits. Stress management techniques, counseling, and open conversations about emotional health can make a significant difference. Multidisciplinary care involving psychologists and counselors could help patients develop coping strategies and improve resilience.

Why It Matters: Taking mental health seriously alongside physical health helps reduce the emotional burden of living with a chronic condition, fostering a better quality of life.

Sleep Disturbances: Breaking the Cycle

What It Is: Poor sleep is both a symptom and a driver of rheumatic diseases. Pain and inflammation often interfere with sleep quality, while lack of sleep exacerbates fatigue and emotional stress.

Expert Insights: Sleep is frequently overlooked in treatment plans, but addressing it can yield significant improvements. The panel discussed interventions like cognitive behavioral therapy for insomnia (CBT-I), sleep hygiene practices, and adjustments to medications that may be disrupting rest.

Why It Matters: Prioritizing sleep could reduce the overall symptom burden, including fatigue, pain, and mental health challenges.

Improving Communication in Healthcare

A significant theme of the session was the critical need for better communication between patients and providers:

Short Appointments, Missed Conversations: The panel acknowledged that limited appointment times often focus on managing visible symptoms like joint inflammation, leaving little room to address “hidden” symptoms like fatigue and brain fog.
Empowering Patients: Resources, such as the QR code shared during the session, empower patients to advocate for themselves. These tools encourage patients to bring up neglected symptoms and ensure they’re part of the conversation during medical visits.

Example of Empowerment: Patients could use tools like symptom-tracking apps to clearly communicate their experiences with fatigue or brain

Why This Matters for Patients

The symptoms highlighted—fatigue, brain fog, mental health issues, and sleep disturbances—often have a more significant impact on daily life than joint pain alone. Tackling these symptoms:

Enables Holistic Care: Patients can receive support that considers their entire well-being, not just physical pain.
Improves Quality of Life: Addressing these hidden challenges can empower patients to better manage their routines, relationships, and aspirations.

Next Steps for Patients and Providers

For Patients:

Speak Up: Don’t hesitate to bring up symptoms like fatigue, brain fog, and sleep disturbances during medical appointments.
Seek Support: Join patient communities or consult multidisciplinary experts who understand the complexities of rheumatic diseases.
Track Symptoms: Keeping a log of your experiences can help you clearly communicate your needs to your healthcare provider.

For Providers:

Dedicate Time: Make space during appointments to discuss symptoms beyond joint pain.
Refer to Specialists: Consider referrals to occupational therapists, dietitians, or psychologists to address symptoms holistically.
Educate Patients: Provide resources and tools that empower patients to better manage their conditions.

This session at ACR 2024 emphasized the urgent need to address the often-ignored symptoms of rheumatic diseases. By fostering open communication, integrating mental health into care, and prioritizing holistic symptom management, we can take meaningful steps toward improving patient outcomes.