Tracking my physical activity gave me a deeper understanding of my RA symptoms and answered many questions I had about my overall health.

Between pain, fatigue, anxiety, depression, difficulty fighting off infections, surgeries, comorbidities, and other symptoms or side effects, physical activity can be an enormous task for someone living with rheumatoid arthritis (RA).

More often than not, I am left wondering:

Am I doing too much, or could I be doing too little?

How much rest do I really need?

What are my triggers for pain and fatigue?

Does exercise really help rheumatoid arthritis symptoms?

Are these health professionals who tell me to exercise because it will help me with my pain telling me the truth? Or are they as lost and confused about what to do with the pain and fatigue as I am?

Before I was diagnosed with RA in 2015, I was overweight, struggling to do simple tasks like walking 5 minutes to the train station, or grocery shopping around a large store.

Now, with the right biologic and consistency with exercise, I am able to complete more steps a day than the average Canadian, who completes just 4,819 steps daily.

My own personal goal each day is to walk 10,000 steps a day, but I often beat that.

My highest recorded day was just over 27,000 steps — not bad for an arthritic girl who thought she would never get to enjoy the beauty of the Stanley Park seawall in full or who gets off an extra train station or two early just to be more active.

But how did I get here and become so in love with tracking my physical activity while living with RA?

When I joined the Arthritis Research Canada patient advisory board in September 2018, I wanted answers to many of the questions I had about living with arthritis.

Participating in research has given me a deeper understanding of my health outside of what my rheumatologist or other healthcare providers can give me during short and infrequent appointments.

Most recently, I joined an Arthritis Research Canada study aimed at learning how health monitoring can help those living with RA.

As a participant in the OPAM-IA (effectiveness of Online Physical Activity Monitoring in Inflammatory Arthritis) study, I attended an in-person education session, tracked my physical activity using a Fitbit Flex, and participated in online physical activity counseling.

I used the OPERAS (On-demand Program to EmpoweR Active Self-management) app developed by the researchers, which was linked to my Fitbit, to track my activity and my symptoms.

The app is designed to help folks with RA visualize how their symptoms and physical activity levels change over time, together with the treatments they are using. It also features tools for tracking medications, recording health notes, and creating action plans to help with reaching specific health goals.

The app provided me visualization with charts of my symptoms on a monthly basis, allowing me to track my progress or decline. It also had an option for printing monthly reports to show my healthcare providers.

I used the app and my Fitbit to track increases in pain or fatigue in order to see patterns I needed to address to my healthcare team. I was also able to take note of how my menstrual cycle impacts my pain, mood, and fatigue at certain times of the month.

Tracking my physical activity gave me a deeper understanding of my RA symptoms and answered many questions I had about my overall health.

Exercise is really helpful

Tracking my activity showed me that, yes, exercise was helping with my fatigue, pain, mood, and more. This has motivated me to be even more active.

Seeing me walking more every day and setting a goal has inspired my young son to want to walk more, too.

Tracking helps me feel organized

The OPERAS app features a health journal, which helps me feel more organized about my health with brain fog and such a complex illness.

Not only was I able to track my symptoms and physical activity but also any changes in supplements, vitamins, and medications to see if they were working for me.

Good sleep is crucial

Tracking my sleep habits really showed me how sleep impacts my fatigue levels during the day. It also showed how much I can handle doing and how my mood is impacted if I don’t get a good night’s sleep. This is especially true on days I am dealing with higher than normal pain or stress.

I was one of 118 people with rheumatoid arthritis or systemic lupus erythematosus (SLE) enrolled in the OPAM-IA study.

The results show that the program has potential to improve the time people spend in moderate-level physical activity, says Dr. Linda Li, PT, PhD, a senior research scientist for Arthritis Research Canada who’s leading the study.

When the team analyzed the data by diagnosis, they found significant improvement in physical activity participation and pain in people with RA but not those with lupus.

More testing is needed to understand if this enhanced self-monitoring strategy is effective for supporting self-care in people with rheumatoid arthritis, says Li.

If you would like to take charge of your health and further advance arthritis research, Arthritis Research Canada has opened OPERAS globally to patients living with RA.

For more information on how to get started with OPERAS, visit Arthritis Research Canada.

Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver, British Columbia, Canada. She’s an ambassador for the Arthritis Society, an Arthritis Research Canada arthritis patient advisory board member, a member of the Doctors of BC Shared Care Chronic Pain Advisory Committee and a patient engagement research ambassador for the Canadian Institutes of Health Research — Institute for Musculoskeletal Health and Arthritis. She’s a regular contributor to Creaky Joints and runs her personal blog, Chronic Eileen. When she’s not advocating or busy being a single mother to her young son, Jacob, she can be found exercising, painting, or cooking.