Adapted from a presentation to the Early RA Support and Education Program
Being diagnosed with a chronic illness such as rheumatoid arthritis (RA) can be overwhelming, and may bring up many questions for you. One of your first concerns is likely to be: “How will I manage my daily life and tasks? The purpose of this summary is to provide some strategies, skills and tools that you can use to help maintain a better quality of life. Armed with an understanding of how RA affects the body, and learning about simple adaptations or work-arounds you can make, the goal is for you to remain as active, productive and healthy as you can be.
RA is a systemic inflammatory disease. “Systemic” means that it affects the whole body, especially the joints. RA is also an autoimmune disease, which means that the immune system in the body, usually responsible for fighting off infections, instead begins to attack cells. The symptoms of RA affect different people in different ways. Certain symptoms, though, are very common. These include:
Fatigue, which is one of the most common features of RA, can have a major impact on your ability to function and take care of your daily tasks at home and responsibilities at work. The unpredictability of a chronic illness like RA, in which there can be periods of remission (having no or only few symptoms) alternating with flares (periods when you have increased joint inflammation), can be challenging physically and emotionally. Given the unpredictability and intensity of flares, it can also be difficult to manage daily tasks during these periods.
Learning how to protect your joints from further damage is an important part of managing living with RA. A good rule of thumb is to respect your pain and inflammation. These are signals that your body needs to take it a little easier. A good way to protect your joints is to reduce your effort by using the larger joints (hips, knees, shoulders and elbows) when possible. For instance, push open a door with your shoulder instead of your hands. (Swapping out a purse in favor of backpack or cross-body bag, for another example, spreads the load across your back.) It’s also a good strategy to avoid “stressful” positions, such as sitting in low chairs that can be hard to exit.
There are several strategies you can use to help manage your daily life with RA.
While medication has a central role in RA management, the information below focuses on coping strategies that are lifestyle-based. You may find that including some of these strategies in your daily routine may have a positive impact on the health and mobility of your joints, and on your ability to function at your best.
Besides getting enough sleep and rest, eating with an eye toward good nutrition, avoiding smoking, and getting regular exercise all play important roles in maintaining a healthy lifestyle. When coping with the pain and fatigue associated with RA, it can be difficult to find the motivation to exercise. But many people with RA find that regular exercise is beneficial in many ways: strengthening muscles and bones, improving stamina and balance, decreasing fatigue and improving mood. But before beginning to exercise, it’s important to talk to your doctor or physical therapist to identify a safe and effective exercise regimen for you. A good way to start is with low-impact exercise.
Walking, swimming or participating in water aerobics classes are low-impact activities that are enjoyable and kind to your joints. Depending on your pace, they can also help with aerobic conditioning. T’ai chi, another low-impact exercise that features slow-motion movements, is a mind-body practice that can have many benefits, including improving flexibility and balance. Over time, and with the guidance of a physical therapist, you may want to expand your exercise routine to a well-rounded approach that would include strength training, stretching and flexibility exercises.
Everyone has had the experience of pushing themselves too hard to get things done. For a person living with RA, taking this approach may leave you depleted (feeling that you have no energy left). The principles of energy conversation aim to address this, and to help you achieve a different outcome. Energy conservation is designed to ration, or save, energy in order to maximize function and independence and minimize the worsening of symptoms.
This involves trying to use your body in the ideal way. If you are a morning person, schedule activities that are difficult for the morning, when you typically feel your best. Or, if you usually feel better during the afternoon, wait until then to attempt the task. Also, make sure you have enough time to accomplish the task and, when necessary, plan time for breaks. Try this: Write down your tasks on a calendar.
Related to planning, is pacing. Don't try to rush a task, but proceed at a moderate (not too fast, not too slow) tempo. Movements that are either too fast or too slow can be taxing on your joints. Power napping for 10 or 20 minutes at a time, can be extremely effective in reducing symptoms and increasing productivity. Try this: Build rest breaks into your daily/weekly tasks.
Perform the most important activities, and postpone or eliminate tasks that are unnecessary. For example, wait to do a physically difficult task until someone is available to help you. Use your energy for things that only you can do. Try this: Write each task on a sticky note. Then arrange them in order of priority.
Using your body to its mechanical advantage will reduce the amount of effort needed to complete a task. This is the principle behind ergonomics. For example, sit down to put on your shoes, and use a cart to move belongings. Try this: Evaluate your “work station” (desk, kitchen, etc.) for ways to optimize how the body fits the space and the task being performed. At work, find out whether your employer offers a complimentary ergonomic assessment of your work space.
Some everyday and seemingly small activities can be very taxing on your joints. If you already work with a physical or occupational therapist, they can suggest a range of adaptive equipment that will make small, daily tasks easier. These devices may also be covered by your insurance.
For example, there are shoelaces that need to be tied only once, knives with easier grips, and levers that can be added to doorknobs. Using large-diameter toothbrushes and pens, bigger key holders, larger caps on medicine bottles or grippy pads to open jars can all take the stress and strain out of “simple” everyday tasks. The Arthritis Foundation Ease of Use Commendation program may be helpful for you to find products of these kinds. When traveling, don’t hesitate to get help managing your load: Ask for luggage assistance from the airline (skycap), train (redcap) or hotel (from the bellhop).
In summary, as someone who lives with RA, it may be helpful for you to think about the best way to accomplish tasks that require physical exertion, no matter how simple they may seem. It may also require modifying your lifestyle: engaging in low-impact exercise, applying the principles of energy conversation to your daily life, and using helpful adaptive equipment – even for the “easy” things. Coping with RA can be difficult, but there are ways to manage the challenges, make daily life the best it can be, and help keep you doing the things you need and love to do.
John Indalecio OTR/L, CHT, MS
Hand and Upper Extremity Therapy Center