The Origin of It’s Not Just Joint Pain: Demystifying Difficult Symptoms of Rheumatic Diseases Often Neglected

Drawing on my personal experience as a patient living with rheumatoid arthritis, I’ve become an active advocate within the arthritis community, known online as Chronic Eileen. Since 2018, I’ve served on the Arthritis Research Canada Patient Advisory Board.I’ve authored over 100 published essays on my journey with rheumatoid arthritis on  Creaky Joints and many more elsewhere. I run support groups for people with arthritis, both locally and online through the Arthritis Society, and have built a social media following of nearly 20,000 between multiple platforms. This is my 6th ACR. My deep roots in the arthritis community mean I hear from patients every day. They resonate with the content I create, and I’ve identified gaps in care and understanding that many of us face. My goal is to shed light on these challenges and work towards solutions to improve the care of rheumatology patients like myself. 

I created this session to start a conversation on the symptoms that Rheumatic disease patients need answers to in hopes to improve the care of patients anywhere in the world.  I created this session to drive research questions around topics that are most important to us patients regardless of how difficult they are. I created the session to move the needle forward.  I created this session as a One-Stop resource for these difficult to navigate symptoms for patients and clinicians and researchers to be able to go back to. 

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.

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 Topics

• 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

Session Rationale

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.

Who was involved

Dr. Ayman Askari – Rheumatologist, The Robert Jones and Agnes Hunt Orthopaedic Hospital

Dr. Susan  Bartlett – Clinical Psychologist, Behavioral Epidemiologist, Professor of Medicine, McGill University; Adjunct Professor of Medicine, Johns Hopkins Medicine

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.

Cristina Montoya –  Cristina has been a Registered Dietitian for over 15 years in Colombia and Canada. Her experience includes research, clinical care, government affairs, nutritional coaching, public speaking, and patient advocacy.Cristina is the owner and founder of the Arthritis Dietitian. She is passionate about empowering women living with Sjogren’s and other rheumatic diseases to adopt an anti-inflammatory lifestyle without unnecessary restrictions while supporting their gut health. She believes in self-compassion, connection and commitment to achieving healthy lifestyle goals, one bite at a time!
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 (Epidemiology) at the University of Aberdeen, Scotland. His research activity is focused on the intersection of sleep health, chronic pain, cognitive function, and physical activity, with a view to developing and testing non-pharmacological interventions for pain management.

Eileen Davidson

Opening Question Of panel Discussion: Why is This Session Important To You?

Ayman: I am essentially a Holistic Educator, and a General Rheumatologist relative to a Superspecialist  who is an expert in one condition. The interaction between Body and Mind has always fascinated me. The need to have a healthy balance between  these two is fundamental in our life. This session is interactive  with colleagues , moreover, few participants are patients with rheumatic conditions sharing their views. This session is important to trainees in medicine, rheumatology and even experienced Rheumatologists who  would like to be more aware of co-morbid,and cognitive conditions.

Daniel: The main reason that this session is important to me is that it was conceived and organized by a person with lived expertise. I am passionate about and committed to collaborating with people living with the conditions that I study in all parts of the research process to ensure relevance and optimal impact. Regarding the multi-symptom focus of the session, my research into non-pharmacological approaches to pain management incorporates assessment and measurement of sleep disturbance, mood, fatigue and cognitive function. Not only is this constellation of symptoms common across different rheumatic and musculoskeletal conditions, but improving one holds potential to improve the others, providing multiple opportunities to improve the quality of life of those affected.

Cristina: As someone who has lived with rheumatoid arthritis and Sjögren’s Disease for over 20 years, I’ve experienced firsthand how neglected symptoms like fatigue, sleep disorders, and depression can impact disease control. Misleading information about diets and “natural” treatments has skyrocketed, often delaying proper treatment and adherence to evidence-based advice. This session is important to me as a Dietitian and patient because I advocate for interdisciplinary teams to address care gaps and combat misinformation. I strongly believe that a comprehensive care approach can significantly improve a patient’s quality of life, enhance employment access, reduce co-morbidities, and enable a more active family and social life.

Cheryl: This session is extremely important as both a patient and an occupational therapist. I started my own comprehensive self-management program, Rheum to THRIVE, in 2020 because I saw that people with rheumatic diseases were left alone to figure out every single aspect of their condition other than medications.

 20 minutes with a rheumatologist once a month is entirely inadequate to meet the comprehensive needs of patients, no matter how wonderful the rheumatologist is. People with rheumatic disease like RA and PSA deserve better support for navigating sleep, stress, fatigue, mental health challenges and more. Why did I learn tools for fatigue, sleep, stress management and more in OT school, yet when it comes to implementation of OT in practice, often patients’ joint pain is the only factor they get services for? We can’t use “insurance won’t cover preventative care / patient education” as an excuse anymore. We have an ethical obligation to serve our patients’ needs BEYOND joint pain. (System level changes are needed for this to happen).

The Resource

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.