If you have any kind of inflammatory arthritis — such as rheumatoid arthritis, psoriatic arthritis, or axial spondyloarthritis — you know that working closely with your rheumatologist and taking medications as directed is crucial. But there are also many things you can do on your own to better protect — and advocate for — your physical and mental health as you go about daily life with inflammatory arthritis.
The European Alliance of Associations for Rheumatology (EULAR) task force recently released recommendations based on a review of the most current scientific evidence available. After combining the literature review with input from health care providers and patient representatives, they came up with nine key recommendations.
All of these recommendations — which you can read in their entirety in the Annals of the Rheumatic Diseases — tie back to a few overarching principals: The authors noted that self-management entails taking an active role in learning about your condition and engaging in shared decision-making, and that feeling confident in your ability to cope with your condition can help is worthwhile.
They also highlighted the importance of patient organizations, noting that, “asides from practical advice and physical support, patient organizations can provide support with mental health issues, self-isolation and loneliness.”
“Self-management, especially with a painful musculoskeletal condition, can be extra challenging, as it requires a great deal of self-motivation. That is why CreakyJoints is so important to those impacted by arthritis,” says Seth Ginsberg, Co-founder and President of CreakyJoints and the Global Healthy Living Foundation. “We provide information, tips, and tools about self-management but, as importantly, the motivation and support from others going through the exact same thing.”
(For more information, motivation, and support, make sure you sign up to get the CreakyJoints newsletter and other valuable resources — all of which are always free.)
Here’s an overview of EULAR’s nine specific recommendations for self-management that both patients and doctors should know about:
1. An active partnership between patient and provider is key
Long gone are the days of the all-knowing doctor and obedient patient. People who work with their doctor to make treatment decisions tend to have better outcomes. But being an active patient isn’t just about making decisions. According to the EULAR recommendations, being an active patient means meeting (and maintaining) relationships with all members of your health care team, joining patient organizations, and educating yourself on your condition.
2. Learn as much as you can about your condition
Knowledge can make you more confident in managing your condition now and in the future. Not only will this newfound knowledge enable you to make the best health care decisions, but studies have found that patient education has improved treatment adherence, which is critical for pain management and possible remission. Turn to trusted health information sources to educate yourself; just keep in mind that every patient is different, and what you read may not necessarily apply to your situation.
3. Health care providers should work with patients on problem solving and goal setting
Frequent check-ins and close coordination are important to building on skills that will allow you to manage your disease confidently
4. Doctors and patients should routinely discuss physical activity
Exercise often improves arthritis symptoms, though many patients don’t exercise regularly. It’s natural to have concerns about exercising safely when you have joint pain and fatigue. Talk to your rheumatologist, a physical therapist, or personal trainer to determine which exercises are best — and safest — for you.
5. Health care providers should share evidence-based advice about lifestyle habits
This is especially true when talking to patients who have comorbid conditions, like diabetes or heart disease. Making certain dietary changes, losing weight if you’re overweight, and not smoking can all be important adjuncts to your treatment.
6. Don’t ignore mental health
Mental and physical health are closely connected and the EULAR recommendations suggest that “addressing mental health issues can help mitigate self-isolation and feelings of loneliness and can result in better self-management.” Though your rheumatologist may be able to help assess your mental well-being, they can also refer you to a mental health professional for more assessment and support.
7. Discuss work-related challenges
Work can contribute to financial independence, self-esteem, and overall quality of life. Unfortunately, it’s common for inflammatory arthritis to keep people from working. It’s important to address any work-related issues with your rheumatologist, and enlist the help of an occupational therapist if advice, resources, and extra guidance are needed.
8. Embrace digital health care where appropriate
In many instances, mobile health apps and other electronic tools can make it easier to stay in touch with your physician in between checkups and keep tabs on your health. It may also help to download our ArthritisPower app, which can help you manage your disease by letting you track your disease activity. This can provide useful information to help you and your doctor make decisions about treatment.
9. Health care providers should learn about and promote patient organizations in their offices.
Patients should know about trusted resources, such as medical journals, health websites, and patient organizations, which can help them take better care of themselves.
“When it comes to living with a lifelong chronic condition like arthritis, we must be resolved in doing the best we can with what we’ve got,” says Ginsberg. “This is also one of the most rewarding things about CreakyJoints and the Global Healthy Living Foundation — knowing that often times we are the difference between someone having a bad day and a normal day.”
Having a chronic disease like arthritis usually means there’s no one way to manage your condition. Trial and error of different medications, lifestyle changes, and complementary therapies is often required to continue to feel well over time. Patient organizations can help provide both the know-how and motivation to continue to make such changes.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Back I. EULAR Task Force Recommendations: Implementation of Self-Management Strategies for Inflammatory Arthritis. Rheumatology Advisor. July 23, 2021. https://www.rheumatologyadvisor.com/home/general-rheumatology/eular-implementation-of-self-management-strategies-inflammatory-arthritis/.
Interview with Seth Ginsberg, Co-founder and President of CreakyJoints and the Global Healthy Living Foundation
Nikiphorou E, et al. 2021 EULAR Recommendations for the implementation of self-management strategies in patients with inflammatory arthritis. Annals of the Rheumatic Diseases. May 7, 2021. doi: http://doi.org/10.1136/annrheumdis-2021-220249.