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In my 5+ decades of living with rheumatoid arthritis (RA), I’ve learned that setbacks are inevitable, whether caused by flares, difficulty finding effective treatment, overdoing it, or injuries. Once the flare ends or an injury improves, you need to build back your strength and stamina, but sometimes exercise can be complicated by the state of your health. In those situations, you may need a gentler approach to fitness. In this post, I’ll share my recent experience of building back my strength after a substantial RA setback, share tips on rebuilding that I’ve learned throughout many such experiences in my life, and how I use tools like the Talk Over RA Discussion Guide to have better conversations with my doctors.

My participation in the 2024 Talk Over RA Open Mic event is supported by AbbVie. They have no editorial role; all opinions are my own. This information should not be a substitute for medical advice by a doctor who knows you and your RA.

As I shared in yesterday’s post on the effect of RA on motivation, I recently went through a forced medication switch mandated by my funding source. I had great hopes that the new drug wouldn’t cause any changes but instead, it turned out to be a 7-month experiment in how to reawaken my RA, erode my health, and diminish my fitness level. Thankfully, I was approved to go back on the medication that’s kept me in remission for the past 18 years, and as it began healing my body, it was time for me to work on building back the strength and stamina I’d lost because of the switch.

Exercise with RA Can Be Difficult

I’ve been here before, ebbed and flowed in and out of weakness and strength. RA is a progressive illness, and it affects everything in your body and your life. According to the Talk Over RA website, 88% of people with RA have pain and 92% have trouble with daily activities, and a full two-thirds need help with daily living. When you have these kinds of barriers to getting through the day, it’s probably safe to assume that regular exercise may hurt, cause a flare, or maybe you can’t do it at all. That’s why I try to avoid using the word ‘exercise’ and expand my idea of what exercise is when you live with RA.

Are you interested in learning more about exercising with RA? Check out the Talk Over RA Schedule for more events on moving your body with different levels of RA.

In my view, the type of physical activity doesn’t matter: Intentionally moving your body with the aim of getting stronger is exercise. I have a lot of damage to my joints and limited range of motion, so simply making a cup of tea is a symphony of stretches, i.e., range of motion exercises. So is flossing my teeth, cleaning my desk, making lunch, brushing the cat (with additional strength training via a chonky cat on my lap), getting dressed, and so much more. It’s all exercise.

Watch my video on building back your strength:

This is what I’ve learned about building back after an RA setback:

Talk to Your Doctor

Your rheumatologist is an important partner in your life with RA and in the conversation about how to keep or build back your strength. Two pieces of information are essential: your current health and its impact on your daily life. The Talk Over RA Discussion Guide is one example of a tool that can help you have this conversation with your rheumatologist, so they understand your situation. They may suggest to tweak your medication, as well as recommend physiotherapy as a way to identify movements that will work for your body as you build back your strength. Of course, you’ll also need to keep up the work in your day-to-day life.

Start Where You Are

Pick a physical activity that’s appropriate for your current fitness level to avoid overdoing it or getting an injury. Starting slowly with something that’s easy and interesting will increase your commitment to doing it again. Don’t measure your progress by comparing yourself to other people — your journey exists in the context of your life, your health, and your current ability. Whatever keeps your body moving will be right for you.

One of my favourite exercises is taking long walks in my wheelchair. Each bump in the sidewalk travels through my body, giving a workout to muscles in my legs, arms, butt, stomach and back. I can intensify the workout by bringing my camera, twisting and leaning forward to get the shots I want. Over time, my strength increases, and the walks become longer.

Be Realistic About Timelines

Building back often takes longer than you think, but of course it depends on where you were before the setback and how significant the setback was. For me, it takes about the same amount of time to regain my strength and ability as it took to lose it. Applying this personal formula to my latest setback means this: Since I spent seven months gradually losing ground as I tried different medications, when I went back to my tried-and-true RA drug I knew it would take at least seven months to build back. During that time, I regularly pushed myself just to my limit and a tiny step past it, as experiences taught me more will trigger a flare that will set me back again. Listening closely to your body will help you discover how far you can push yourself.

The Emotional Side of the Building Back

I’ve done this setback-rebuilding process many times and it can be intensely frustrating. The longer it takes, the more likely it is to also add anxiety and depression, which sap what little energy I have. That makes it harder to cope and take the action needed to persist in the activity that helps me get stronger.

It’s normal to feel frustrated. When I do, I let myself feel it — I call this Having a Swish — and I seek support from loved ones, as well as book a few extra sessions with my therapist. And then I remind myself how long it took to get wrecked, give my body to grace it needs to keep going, and get back on track.

Living with RA means living with setbacks. They will never not be frustrating a feel devastating. Having a plan in place, one that’s informed by your past experience with this process, will help you move at the pace your body needs to build back without injury and flares. Getting stronger means working with your RA, taking it slow and steady. Be patient with yourself and your body. You’ll get there.