Living with a rheumatic disease brings unique challenges beyond joint pain. This page offers resources and insights to help you manage often overlooked symptoms like fatigue, cognitive impairment, and mental health concerns. Find practical guidance for patients and healthcare providers alike, and discover tools to foster collaboration and enhance care. Drawing on expert insights and patient experiences, this page is dedicated to helping you navigate the complexities of rheumatic diseases and improve well-being.
Origin of It’s Not Just Joint Pain: Demystifying Difficult Symptoms of Rheumatic Diseases Often Neglected
A panel discussion spearheaded by patient advocate Eileen Davidson at the 2024 American College of Rheumatology Conference highlighted the need for resources addressing the complex challenges of rheumatic diseases. This discussion has been instrumental in creating the patient-focused resources presented here.
About the #ACR24 Session
It’s Not Just Joint Pain: Demystifying Difficult Symptoms of Rheumatic Diseases Often Neglected
Saturday November 16th 2024 at the American College of Rheumatology Convergence (Annual Scientific Meeting) in Washington , DC, US
This session aims to guide patients and a multidisciplinary team of healthcare professionals in comprehending and addressing the complex symptoms of rheumatic diseases, such as cognitive impairment, mental health concerns, fatigue, sleep issues, and comorbidities, while exploring effective management strategies across various supportive specialties.
Learning Objectives:
- Discuss the concerns with fatigue, sleep issues, cognitive impairment, comorbidities, and mental health struggles and identify the advice given by multidisciplinary healthcare professionals and patients’ awareness
- Demonstrate tools, resources, and strategies, including guidelines, support programs, and personalized treatment plans
- Devise discussions between patients, rheumatologists, and other healthcare professionals
Many patients with rheumatic and musculoskeletal diseases report fatigue, cognitive dysfunction, sleep disturbances, mental health struggles, and common comorbidities as a main concern with quality of life. Research shows these contribute to poorer disease outcomes. However, little guidance and information is provided for rheumatology professionals and patients. Recent guidelines show these symptoms across many rheumatic diseases require an integrative approach, although not all patients have access to or are offered the necessary resources to understand, self-manage, and navigate these debilitating symptoms that are often neglected. This session aims to guide a multidisciplinary team of healthcare professionals in comprehending and addressing the complex symptoms of rheumatic diseases, while exploring effective management strategies across various supportive specialties. One of the goals is to spark a conversation between patients and rheumatology professionals around symptoms that are often overlooked and misunderstood. Audiences will learn various symptom focuses beyond pain and explore personalized treatments and self-management for patients, influencing disease outcomes.
Articles and Recordings
Features
Chronic Eileen Blog Posts
The Team
Dr. Ayman Askari is a seasoned Consultant Rheumatologist based in picturesque Shropshire, UK. With extensive experience treating rheumatic conditions, he is a trusted authority in his field. Complementing his clinical practice, Dr. Askari has taught rheumatology at Keele University and presented research at renowned conferences. He currently supervises musculoskeletal research as an Orthopaedic Institute trustee. Active in professional organizations, Dr. Askari focuses on inflammatory arthritis and chronic pain management within the National Health Service.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for twenty one years. Cheryl started Arthritis Life and the Arthritis Life Podcast to educate, empower and support people living with inflammatory forms of arthritis. She created and facilitates the online course and support group Rheum to THRIVE to help people live full and meaningful lives and connect to a supportive community. Cheryl graduated from Samuel Merritt University in 2012 with a Masters in Occupational Therapy and earned a BA from Vassar College with honors in Psychology in 2004.
Dr. Susan Bartlett is a Clinical Psychologist, Behavioral Epidemiologist, Professor of Medicine, McGill University; Adjunct Professor of Medicine, Johns Hopkins Medicine.
Cristina Montoya is a dynamic Registered Dietitian who lives with RA and Sjogren’s Disease. She founded Arthritis Dietitian to empower women with rheumatic diseases to embrace a non-restrictive, wellness-focused lifestyle while supporting their gut health. Over the past five years, Cristina has played a pivotal role in developing wellness and nutrition resources for the Arthritis Society of Canada and the Sjogren’s Society of Canada.
Dr. Daniel Whibley is an Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan and an Honorary Lecturer in Applied Health Sciences at the University of Aberdeen, Scotland. His research is focused on the intersection of chronic pain, sleep health and physical activity, and includes developing and testing non-pharmacological interventions for pain management.
Eileen Davidson is a rheumatoid arthritis patient advocate, writer and speaker from Vancouver BC. She is a regular writer for Creaky Joints, an ambassador with The Arthritis Society and patient advisory board member (APAB) with Arthritis Research Canada among many more. Healthline, Everyday Health and Health Central have called her blog and social media channels one of the best in the arthritis community to follow.
Navigating Fatigue and Cognitive Dysfunction in Rheumatic Diseases
Fatigue and cognitive dysfunction (“brain fog”) in rheumatic diseases can be debilitating, impacting daily activities and quality of life more than joint pain. It’s essential to acknowledge these pervasive symptoms and provide more support for patients to manage them effectively.
Versus Arthritis
- Managing Fatigue Online Learning Program
Autoimmune Association
National Axial Spondylarthritis Society
Arthritis Australia
Fatigue and Cognitive Dysfunction References
- 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases
- Fatigue in inflammatory rheumatic diseases: current knowledge and areas for future research
- Role of Fatigue in Difficult to Treat Rheumatoid Arthritis
- Residual’ Fatigue and Its Severity in Patients with Rheumatoid Arthritis in Clinical Remission: Prevalence and Associated Factors
- Benefits of exercise in patients with rheumatoid arthritis: a randomized controlled trial of a patient-specific exercise programme (2014)
- The Effect of Exercise on Sleep and Fatigue in Rheumatoid Arthritis: A Randomized Controlled Study (2020)
- Neuropsychological Evaluation of Cognitive Impairment in Patients with Rheumatic Diseases
- Cognitive implications of rheumatoid arthritis: A call for comprehensive care and research focus
Patient Perspectives
- How I Explain Chronic Fatigue to Those Who Don’t Have It
- Since Being Diagnosed with Rheumatoid Arthritis, I Always Feel Like I Have the Flu. Here’s What I’ve Learned About Malaise
- Why Rheumatoid Arthritis Mistakes Happen and How I Manage Them
- Occupational Therapy and Arthritis: The Unsung Hero of My Arthritis Care Team
Summary Blog Post
Navigating Mental Health in Rheumatic Diseases
The emotional toll of rheumatic diseases, such as chronic pain and unpredictability, can lead to anxiety, depression, and stress. Addressing mental health is crucial for improving quality of life and treatment outcomes. Open conversations and comprehensive support can help patients better manage their condition.
The Arthritis Foundation
Versus Arthritis
Autoimmune Association
The Arthritis Society
Arthritis Research Canada
Arthritis National Research Foundation
Arthritis Life Cheryl
Diet and Mental Health Resources Provided by Cristina Montoya, RD
Mental Health References
- Depression in patients with rheumatoid arthritis: description, causes and mechanisms
- The risk for depression in patients with ankylosing spondylitis: a population-based cohort study
- Improving recognition of anxiety and depression in rheumatoid arthritis: a qualitative study in a community clinic
- Risk of Psychiatric Disorders following Ankylosing Spondylitis: A Nationwide Population-based Retrospective Cohort Study
- Centers for Disease Control and Prevention. Symptoms of Anxiety and Depression Among Adults with Arthritis
Masood A et al. Are we missing the diagnosis of depression in patients with rheumatoid arthritis at a tertiary care facility?
Patient Perspectives
- The 11 Moods of Rheumatoid Arthritis and How I’ve Learned To Cope With Them
- Mourning Your Old Life After a Rheumatoid Arthritis Diagnosis – And How to Move On
- Arthritis ‘Flare Fear’: What I Do When Flare Anxiety Makes Me Feel Trapped
- Self-Love and Self-Care: What Chronic Illness Taught Me About Both
- Top 10 Frustrations I Regularly Experience Living with Rheumatoid Arthritis
- What Stress Does to My Rheumatoid Arthritis — and How I Deal With It
- 8 Strategies for Coping with Envy and Chronic Illness
- Managing Burnout While Living with Rheumatoid Arthritis
- How I Cope With Loss From Chronic Illness
- You Can’t Get This From a Doctor: The Impact of Support Groups for Those Living With Arthritis
Summary Blog Post
Navigating Sleep in Rheumatic Diseases
Sleep disruptions are common in rheumatic diseases, worsening symptoms like pain, fatigue, and emotional distress. Addressing sleep issues is crucial not only for improving comfort but also for managing the condition holistically and enhancing overall health outcomes.
The Arthritis Foundation
- Sleep Solutions for Pain Webinar
- Sleep and Fatigue Strategies for Arthritis Webinar
Versus Arthritis
The Arthritis Society
Arthritis Research Canada
Sleep References
- Can’t Sleep, Won’t Sleep: A Systematic Review and Meta-Analysis of Insomnia Prevalence in 70,105 Rheumatoid Arthritis Patients
- Direct Comparison of Sleep Quality and Risk Factors for Poor Sleep Across Rheumatoid Arthritis, Axial Spondyloarthritis and Psoriatic Arthritis
- The Effect of Exercise on Sleep and Fatigue in Rheumatoid Arthritis: A Randomized Controlled Study
- Occupational Therapy Practice in Sleep Management: A Review of Conceptual Models and Research Evidence
- How Occupational Therapists Assess and Address the Occupational Domain of Sleep: A Survey Study
Patient Perspectives
Summary Blog Post
Physical Activity and it’s role in Navigating extra-Articular Symptoms of Rheumatic Diseases
Regular, tailored exercise is vital for managing rheumatic diseases, helping to alleviate fatigue, improve cognitive function, and enhance emotional well-being. Physical activity promotes better sleep, reduces inflammation, and empowers patients to navigate their condition more effectively.
The Arthritis Foundation
Versus Arthritis
The Arthritis Society
Arthritis Research Canada
- Just One Move
- 30-Day Exercise Challenge for Arthritis
- Arthritis At Home Exercise Guide for Arthritis
- Strong With Arthritis Education Series
- I-START
- I START: Individuals with Rheumatoid Arthritis Strength Training Guide
- ISTART PDF
- Indoor Exercise Snacks Higher Intensity by Arthritis Consumer Experts Arthritis At Home Youtube
National Axial Spondylarthritis Society
- Exercise Matters – Take Charge – Take Action Guide
National Rheumatoid Arthritis Society
Arthritis Australia
Physical Activity References
Patient Perspectives
Nutrition and it’s role in Navigating extra-Articular Symptoms of Rheumatic Diseases
Nutrition is crucial for managing rheumatic diseases, with certain diets helping reduce inflammation and improve symptoms. However, misinformation often leads to patient confusion. Relying on trusted, evidence-based resources helps individuals make informed nutritional decisions supporting their health.
The Arthritis Foundation
- Healthy Eating Made Easy for Arthritis Webinar
- Best Supplements for Arthritis Webinar
- Taming Inflammation with Culinary Medicine Webinar
- Plant-Based Diets Webinar
- Microbiome-Arthritis Connection Webinar
Versus Arthritis
- Eating Well With Arthritis Youtube
Arthritis National Research Foundation
The Arthritis Society
Autoimmune Association
Patient Perspectives
Summary Blog Post
More information to navigate the rheumatic disease journey
Living with rheumatic diseases requires a multifaceted approach, including medical treatment, lifestyle changes, and support from healthcare professionals and peer communities. Joining supportive organizations and groups provides tailored resources and alleviates feelings of isolation.
Support Groups
Creaky Joints
Many useful articles and also a community favorite. What sets CreakyJoints aside from other sites? They attend ACR and do research.
Comprehensive self-management program, addresses every concern listed with an optional support group option (open worldwide) created by Cheryl Crow, occupational therapist and person living with rheumatic disease.
The International Foundation For Autoimmune and Autoinflammatory Arthritis
The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) is a patient-led organization dedicated to advancing education, advocacy, and research for those impacted by autoimmune and autoinflammatory arthritis diseases through collaboration and resources driven by patient-identified issues and solutions
Clinician Created Resources
Contact For Resource or Reference Suggestion
Do you have a reference or resource missing from this page that you would like to add? Please email us about it! Note that we do review all resources and references for accuracy.
