Q:First, can you describe the role of fatigue and pain in rheumatoid arthritis (RA) systemic lupus erythematous (SLE)? What do these symptoms feel like, and what is the range of severity that patients living with the disease might experience?
Pain and fatigue are, by far, one of the most common concerns. While most patients expect to experience some amount of pain, many are surprised at the impact of fatigue.
The range of severity of pain can vary widely, depending on several factors, including the number of joints affected, stress, time of day, weather, how well the disease is controlled, and a patient’s activity level. There are so many variables to consider when assessing a patient’s pain scale.
Patients’ descriptions of pain can also vary widely. Some patients describe their joint pain as “achy,” “stiff,” or “uncomfortable,” whereas others describe the pain as so debilitating that they are convinced they have broken a bone.
When patients describe fatigue, it is usually a more consistent description. They typically describe it as “more than just being tired” or as an “overwhelming exhaustion.” When a patient complains of fatigue, the first question I ask is, “How do you feel you sleep at night, and do you wake up feeling rested?” Many of them tell me that they do not sleep well due to pain and discomfort, which leads to fatigue. Surprisingly, however, many patients report that they do sleep well for at least eight hours but do not wake up feeling rested, which is common with autoimmune related fatigue.
Q: How do these symptoms affect quality of life?
Both pain and fatigue can have a significant impact on quality of life for women in particular. Women today seem to have so many pressures on them—many have demanding professional lives and are also parents, and the stress of trying to keep up with a “normal routine” can be exhausting. Simple tasks, which many of us take for granted, such as opening jars, turning on faucets, and even buttoning or zipping pants, can become impossible due to pain. Many women are exhausted after a quick trip to the grocery store or even a walk around the block. When the symptoms start to interfere with a woman’s routine activities of daily living, it can have a negative impact on her quality of life.
Q: How might living long term with pain and fatigue lead to depression?
The long-term effects of living with chronic pain and fatigue can cause many women to feel invaluable or powerless. As mentioned before, women can feel the burden of high expectations, whether their own or those perceived as societal norms, and these pressures can seem insurmountable at times. Add to those demands living with a chronic disease and dealing with daily pain and fatigue, and it can become overwhelming, increasing the likelihood of developing some level of depression.
Q: If you are experiencing depression as a result of these symptoms, how can you communicate effectively with your care team to get the treatment you need?
Speak up! Talk to your nurse or rheumatologist and tell them how you are feeling. Depression is very common however there are many ways to manage depression, and your healthcare provider can discuss what treatment plan would be best for you. Symptoms of pain, fatigue, and disrupted sleep, can also mimic the symptoms of depression. Therefore, it is important that you be open and honest with your provider. I always tell my patients, “I can’t help you if you don’t tell me.” Communication is key!
Q: Understanding that each patient’s diagnosis and symptoms are unique, what treatment strategies might patients and their care team consider in order to manage the underlying symptoms of pain and fatigue and also the resulting depression?
Identifying depression can help guide treatment. While there are several medications to treat depression and pain, patients often want to know what they can do to feel better without adding medications. The good news is that there are several nonpharmacological therapies that can help fight symptoms effectively. In fact, making simple lifestyle changes can help improve pain and fatigue and fight depression.
The first thing to remember is to keep moving! If there is one phrase that I find myself repeating every day, that is it. It’s easy for patients to become discouraged and feel like they cannot exercise because of their symptoms; however, even small movements every day can help decrease pain and stiffness in joints, decrease stress, and increase energy levels. We always encourage patients to start slowly and to pace themselves when beginning any exercise program.
The next thing that is important is getting enough rest. Getting a good night’s sleep is not always easy for our patients but being consistent with good sleep habits can really help. Sleep at night is important, but so is rest during the day, if you need it. Listen to your body—after all, you know it better than anyone else. If you need to rest, no matter the time, that is okay! Give your body and mind a time out.
Proper hydration and nutrition are also important, especially in fighting fatigue. While there is no specific diet that universally helps manage symptoms using common sense and maintaining healthy eating habits and proper nutrition is essential to increasing energy levels.
Finally, I always encourage patients to find a support group. Many patients feel alone or lost in their diagnosis, especially young women, and that can lead to depression. Sometimes just knowing that there is someone else who is going through similar trials can be empowering. Being able to talk to someone who truly understands can be an integral part of the treatment plan.
Carrie Beach, RN, BSN,has been a dedicated rheumatology nurse with the Columbus Arthritis Center for more than 11 years. She graduated with honors from The Ohio State University College of Nursing in 2003. A compassionate patient advocate, Carrie has a passion for serving those with rheumatologic diseases and ensuring that they receive the best care possible. Carrie currently serves on the Rheumatology Nurses Society Board of Directors. She is an active volunteer for the Arthritis Foundation, serving as a member of the Mission Committee. She has also recently participated in Ohio’s Arthritis and Advocacy Day to help raise awareness and advocate for the needs of patient living with arthritis.