Rheumatoid arthritis (RA) is a type of inflammatory arthritis that occurs when the immune system malfunctions and starts to attack the synovium, the linings of the joints. RA causes joint pain and swelling, severe fatigue, sleep problems, and reduced mobility. All these symptoms can affect a person’s overall well-being and daily aspects of their life.
RA is unpredictable—you might feel better today, but you don’t know what tomorrow will bring. You might also worry about pain and the daily physical impact of the condition. Some people with RA are concerned with the long-term effects of RA, including disease complications that might affect life expectancies, such as heart disease and life-threatening infections.
This article will cover coming to terms with your diagnosis, living with RA day-to-day, daily reminders, planning, and more.
Coming to Terms With Your RA Diagnosis
People who have RA want normalcy just like everyone else. But chronic illnesses like RA can be disruptive. The reality is, that no matter how tightly you hold on and try to fight the changes RA brings, the disease will progress.
Fortunately, RA is a treatable and manageable condition. It might pose some limitations, but it does not have to take over every aspect of your life. Even with disease progression, it surprisingly gets easier to recognize changes, work with limitations, and enjoy life with and despite RA.
Personal Patient Experiences
There is no cure for RA, but treatments, including medicines and physical therapy, can help you to manage the disease. It will take some time, but you will find what best works for you as you manage RA from day to day.
To offer some hope and insight, people living with RA share how they manage the disease and thrive.
Laura, age 45, says: “Fifteen years ago, I was a new mom when I awoke to severe joint pain and stiffness that affected my ability to care for my baby. I was afraid that I would no longer be able to care for myself and my family, work, and continue my cooking blog.
“It took about five years, but my doctor and I finally found a treatment plan that cut down the number of flares (periods when symptoms worsen) I experienced. Currently, my RA is well controlled, and I continue to thrive in my career, care for my family, and share my passion for cooking.
“I work as an editor for an online publisher, and my workspace, which includes a sit/stand desk and an ergonomic chair, makes it easier to carry out parts of my job. In my kitchen, I use ergonomic kitchen tools designed for people with arthritis and other hand conditions.”
John, 60, was an avid runner before being diagnosed with RA in 2015. “My biggest fear was I wouldn’t be able to run anymore. But I listened to my doctor, paid attention to my diet, took my medications exactly as prescribed, and kept moving. It wasn’t always an easy experience, but I ran my first half-marathon last year.”
Addison was diagnosed with RA at age 22. At 35, she shares, “At the time of my diagnosis, I had a very busy and active lifestyle. I enjoyed running, volunteering, and being outdoors. I was also working on a degree in education. RA came into my life and slowed me down.
“The most important thing I have learned is that I shouldn’t be so hard on myself when I can’t accomplish everything I want. On the days I feel stronger, I take the time to do at least one important thing to me, whether it is volunteering, going for a hike with a friend, or preparing something special for my students. RA may have slowed me down, but it has not stopped me.”
Each Day Won’t Be the Same
One of the biggest challenges faced by people with RA is the unpredictable nature of the disease. Symptoms, such as pain and stiffness, can sometimes appear overnight without any immediate or known disease triggers.
According to a 2017 report that explored RA symptoms and their effect on a person’s quality of life, common themes emerged. Themes included “fluctuating symptoms,” “unpredictability of symptoms,” and “challenging” to describe symptoms. Researchers also noted daily and hourly variations in pain, fatigue, and mood.
Because of RA’s unpredictable nature, living with the condition takes a lot of planning. With time, you learn to prepare for what the disease brings to your life. You will learn to listen to your body, know when to rest, and how to best deal with symptoms and flare-ups.
Day-to-day living with RA can impact a person’s life in different ways. It is possible to lesson some of these effects as you go about the different parts of your day.
Many people with RA will awaken to stiff and achy joints. This is often the result of reduced movement during sleep.
You may awaken fatigued and groggy after a night of unrefreshing sleep. This might happen because you struggle to fall asleep, don’t sleep long enough, or wake up frequently during the night.
A study reported in 2014 found that disrupted sleep was common in people with RA. Poor sleep quality was linked to more severe disease and depression in people with RA.
RA can be tiring, and as you get moving and busy with your day, you might find yourself easily fatigued. You might feel drained when afternoon comes about. The type of fatigue people with RA experience is unrelated to physical activity and is not relieved by rest.
According to a 2018 report in the journal Rheumatology, prevalence studies report fatigue rates of 4 to 8 times higher for people with RA than people in the general population. This report also notes that 74% of people with RA experience high and worsening fatigue levels.
If you have been fortunate to keep working, your job can still be exhausting. For example, if your job requires much sitting or standing, your joints might be painful and stiff when the workday ends. Or you may feel fatigued and need to nap as soon as you get home.
Pain and fatigue might also affect focus and job performance. According to a 2019 report, workplace limitations, disability, and reduced health-related quality of life are seen frequently in people with RA. The authors further note the worsening of the disease added to decreased work productivity and reduced quality of life.
For many people with RA, evenings can be difficult, especially after a long day of fighting the effects of a compromised immune system. But going to bed early isn’t always an option.
If you have children, pets, or older parents, evening doesn’t mean your workday has ended. You may have to prepare dinner for your family, clean, do laundry, feed a pet, or take your dog out for a walk.
RA might also affect your relationship with your significant other. It can impact different parts of a relationship, including who does chores, what you do in your spare time, and even your intimacy.
By the time bedtime rolls around, RA has drained you. Once you lie down, you realize how painful and stiff your joints are, and this is where your sleep struggles start.
Daily Reminders and Planning
You can use different strategies to manage your daily life with RA, conserve your energy, and manage joint pain and stiffness.
Try a warm shower and some gentle stretching to get moving in the morning. Consider taking a short walk at lunchtime—even a 15-minute walk can increase your energy and keep you moving.
When you are out and about running errands, park farther away from the entrance to get some more steps in. You might even consider a short walk after you have had dinner if your schedule allows.
A healthy breakfast can give you energy and reduce fatigue. If you don’t like to eat breakfast in the morning, try sipping on a smoothie or nibbling on a piece of toast with peanut butter—whatever you can handle.
Do Only What You Can
Plan your days for what you know you can handle. Try to not overdo things even on your good days. RA is a fluctuating condition so you can go from feeling great to flaring up pretty quickly.
Take Naps Only as Necessary
Naps can be tricky. They may feel needed, but they can actually affect your nighttime sleep. So, only take them if you had struggled to sleep the night before or wore yourself out during the day. Limit naps to no more than 30 minutes a day.
Know Your Exercise Limits
When coping with pain and fatigue, exercise is beneficial. An excellent way to start is with low-impact activities like swimming or water aerobics. Physical therapy can help you expand your exercise routine to include strength training and exercises that improve stretching and exercises.
Stay on Top of Your Medication Schedule
Taking care of yourself and staying on top of RA starts with taking your medication on schedule as your healthcare provider has prescribed. Try not to skip doses and let your healthcare provider know if you experience severe or ongoing side effects.
While it can be tempting to want to stop taking a medication because of side effects, do not make that decision without your healthcare provider’s guidance.
Have an Evening Routine
Establishing an evening routine can help you unwind and get to sleep quicker. Take a warm bath, take any medications you need, and put away the electronics.
Make sure your mattress and bed are as comfortable as possible. Choose soft blankets and bed linens that won’t put pressure on your joints.
Nurture Your Most Important Relationship
People with RA sometimes feel their partner doesn’t take the time to understand their daily struggles. But the challenges that RA brings in its wake affect both partners. Having a supportive partner makes many of the aspects of living with RA less difficult.
It is not always easy for your significant other to see your pain, struggles, and limitations. They cannot read your mind. They love you and want to hear about your stress, needs, and worries, including those that affect intimacy. Speak up, and allow your loved one to be there for you.
Get Comfortable Using Physical Therapy Aids
Some daily activities can be demanding on your joints. A physical or occupational therapist can suggest assistive devices to make everyday activities easier.
Some of these might be covered by private health insurance or Medicare. Check with your insurance company to see what costs and devices your plan covers.
Examples of assistive devices that might be helpful to people with RA are:
- Button hooks, zipper pulls, and dressing sticks
- Large-diameter toothbrushes and pens
- Large, easy-to-open medicine caps
- Grip pads to open jars
- Bed risers
- Supportive pillows
- Adaptive kitchen tools
- Ergonomic office equipment to make your workday less stressful, including supportive chairs, sit/stand desks, handsfree headsets, and slanted writing boards
- Heated seats in your car to soothe RA pain and swelling
- Doorknob covers that make twisting and gripping when opening a door much easier
The Arthritis Foundation’s Ease of Use Products page can be a helpful tool for finding the right assistive devices for you.
Self-Criticism, Ableism, and Mental Health
People with RA often experience barriers that affect their ability to manage the emotional effects of the disease, which in turn affects their physical health.
Living with RA can make you more critical of yourself. It is hard to feel good about yourself when facing physical limits, chronic pain, and changing life plans.
RA can also affect self-esteem because it leads to body changes, including weight gain or loss, deformity in the hands and feet, and problems with walking. According to a study reported in 2019 in the Archives of Rheumatology, people with RA are 8 times more likely to have a poor body image than those without RA.
“Ableism” refers to practices or ideas that discriminate against people with disabilities, with a mindset that not being disabled is normal. People with RA experience invisible disabilities, meaning RA’s effects on them are not always visible to the rest of the world.
This type of judgment can come from anyone, including people in the medical field. For example, someone might say to you, “At least it is not cancer,” or say to someone in their 20s, “You’re too young to have arthritis.”
Ableism can make people with invisible disabilities feel self-conscious, so they refuse to use accommodations in their job, personal life, and when they venture out. This is often due to fear of judgment from those around them.
RA can take its toll on your mental health. According to a 2020 report, people with RA are more susceptible to anxiety, depression, and cognitive impairments (declines in thinking and memory) than others in the general, healthy population. These mental health effects can also contribute to a lower response to treatment and higher disease activity.
Mental health issues might be the result of chronic fatigue and body pain. They might also result from living with the consequences of RA, including self-criticism and ableism.
If you have RA and are worried about your mental health, talk to your healthcare provider about your concerns. They can assess you, recommend treatment, and refer you to a mental health professional.
Rheumatoid arthritis is a lifelong condition without a cure. It has the potential to affect every part of your daily life. Despite its complicated and unpredictable nature, you can still manage and reduce its effects on yourself and your loved ones.
You can do many things to make day-to-day living more manageable, including eating healthy, staying active, practicing good sleep hygiene, resting as needed, using assistive devices, and more. It is also essential to avoid self-criticism and work to prioritize your mental health.
A Word From Verywell
Living with rheumatoid arthritis is not for the faint of heart. It is a difficult journey, and it can be a challenging disease to control. But you are not alone. There are others out there dealing with some of the same things you are going through.
Consider reaching out others like you by joining a support group. If one group doesn’t seem like a good fit, don’t give up. Keep looking until you find your people; they are out there.
Frequently Asked Questions
Do rheumatoid arthritis patients have pain-free days?
Most people with RA experience some level of pain, stiffness, or fatigue every day despite treatment with newer and more advanced therapies. But it is possible to have pain-free days or experience remission (periods with little or no symptoms).
What are common RA triggers?
Episodes of severe symptoms called flares are common in RA. These can be unpredictable and draining. They can make you feel temporarily worse but will resolve with some time.
RA flares can occur for an unknown reason or due to a disease trigger. RA disease triggers include poor sleep, stress, infection, illness, and overexertion.
Can you qualify for disability benefits with RA?
Having RA does not automatically qualify you for disability benefits. However, if you can prove RA affects your ability to work, you might be entitled to Social Security disability benefits.
What can others do to help patients living with rheumatoid arthritis?
You can start by learning about your loved one’s condition. Read up about RA and ask how RA impacts them in their daily life. Or just simply take the time to listen and learn when your loved one seeks out your support.