May 2020 Issue
Focus on Fitness: Exercising With Lupus
By Jennifer Van Pelt, MA
Vol. 22, No. 5, P. 50
For people with lupus and those fighting to raise awareness of its effects, May is an important month. Not only is it Lupus Awareness Month, but May 10 is World Lupus Day. Both designations are intended to raise awareness of lupus, an autoimmune disease that can be difficult to diagnose—for many patients it can take years.
Lupus often is referred to as the “great imitator” because its symptoms are varied and changing, can affect the entire body, and may mimic other diseases. You may be familiar with the internet meme, “It’s not lupus!” originating from the popular medical drama House, M.D., starring Hugh Laurie as the brilliant but cantankerous title character Gregory House, who solves medical mysteries with his residents. In several episodes, his younger colleagues propose lupus as a diagnosis, to which he replies, “It’s not lupus” or “It’s never lupus.” For 1.5 million Americans (approximately 16,000 new cases annually) and more than 5 million worldwide, it is, in fact, lupus.
The most common form of lupus and the focus of this article is systemic lupus erythematosus (SLE), which occurs in approximately 70% of all lupus cases. This form can affect joints, skin, and/or major organs. In approximately one-half of all SLE cases, one or more major organs, including the heart, lungs, kidneys, and brain, will be affected.
Another type of lupus—cutaneous lupus—affects only the skin and occurs in approximately 10% of all lupus cases. The remaining 20% of lupus cases include drug-induced lupus and neonatal lupus.
SLE generally develops between the ages of 15 and 44 years; of adults with the disease, 90% are women. SLE can be fatal—between 10% and 15% die prematurely from complications of SLE. The Lupus Foundation of America describes SLE as “an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it’s hidden from view and undefined, has a range of symptoms, and strikes without warning, and has no known cause or cure.”
Symptoms and Severity
In autoimmune diseases, the body’s immune system attacks its own tissues and organs, causing inflammation and other damage. Symptoms and disease severity of SLE vary depending on the organs and tissues affected. Symptoms can include the following:
• extreme fatigue;
• butterfly-shaped facial rash and rashes in other areas;
• hair loss;
• unexplained fevers;
• mouth or nose ulcers;
• swelling from edema in hands, feet, or legs;
• abnormal blood clotting;
• heart disease and stroke;
• kidney disease;
• painful breathing due to inflammation in the chest;
• neurologic dysfunction, including cognitive loss, vision problems, memory issues, dizziness, and seizures; and
• chronic painful swollen joints and muscles.
Those with SLE have a much higher risk of CVD and mortality. The leading cause of death in those with SLE is heart attack, which occurs, on average, 20 years earlier than in the general adult population.1
Regular exercise is important in helping to minimize cardiovascular risk, but general exercise recommendations for SLE patients are difficult due to the disease’s complexity and the variation in severity between patients. For example, some patients may have no visible symptoms, while others may have physical disabilities. Daily functioning varies depending on symptoms.
As with all autoimmune diseases, SLE is characterized by flares—exacerbations—in symptoms. One in 3 patients with SLE has multiple autoimmune diseases, which may further complicate symptoms and daily functioning. The ability of an individual with SLE to exercise regularly will depend on the severity of the disease and the type of symptoms, as well as other medical conditions.
A 2017 meta-analysis found that therapeutic exercise is safe and doesn’t adversely affect SLE disease progression or severity. Reported benefits of exercise for SLE patients include reductions in depression and fatigue as well as improvements in physical fitness.1
In comparison with exercise research for other medical conditions, studies on exercise for SLE are limited. In fact, insufficient research has been conducted to definitively determine the ideal exercise activities for those with SLE. Aerobic exercise has been studied the most; most studies reporting benefits were for low-impact aerobic activities.1
Researchers with the National Strength and Conditioning Association (NSCA) published exercise guidance for those with SLE, noting that most of these patients safely can engage in exercise training provided they receive physician clearance. The NSCA cited the following benefits of regular exercise for those with SLE2:
• increased aerobic capacity and endurance;
• improved sleep quality;
• reduced anxiety and depression;
• decreased fatigue; and
• improved overall quality of life.
For those cleared by a physician for exercise, a combination of aerobic activities, resistance training, and stretching is recommended. Walking, cycling, water exercise, Wii Fit exergaming, strength training with handheld weights and resistance bands, and static and dynamic stretching have been shown to provide fitness benefits for those with SLE.2
SLE patients with cardiopulmonary symptoms or photosensitivity or who use pain medications regularly require additional considerations for an exercise prescription. When SLE involves the heart and lungs, exercise may be contraindicated, or medically supervised exercise may be required. For patients taking medications such as analgesics or corticosteroids for pain and inflammation, exercise intensity should be monitored. Pain relief from medications may result in overexercise and lead to disease flares.
Patients with photosensitivity require guidance for outdoor exercise to avoid sun-induced rashes and symptom flares; diligent use of sunscreens and UV-blocking clothing, and exercising in the early morning or evening can mitigate photosensitivity reactions.2
The NSCA researchers note, “The range in severity of lupus differs from person to person and from day to day, making it imperative that exercise programs be tailored specifically for each individual.” Exercise plans will need to be adapted to accommodate changes in symptoms that can occur daily. For example, a three-mile walk on an inclined treadmill may be doable one day while chair yoga may bethe only tolerable activity on another day.
No studies have been published on mind-body exercises such as tai chi/qigong, yoga, and Pilates specifically for relieving symptoms of SLE. However, evidence from other medical conditions supports their use to relieve muscle and joint pain and stress, and improve quality of life. Therefore, gentle forms of these mind-body exercises also are likely to benefit those with chronic pain and fatigue from SLE.
For more information, the Lupus Foundation of America has a Lupus Awareness Month toolkit and other educational resources available at www.lupus.org/lupus-awareness-month/lupusawareness-month-toolkit.
— Jennifer Van Pelt, MA, is a certified group fitness instructor and health care researcher in the Lancaster, Pennsylvania, area.
1. O’Dwyer T, Durcan L, Wilson F. Exercise and physical activity in systemic lupus erythematosus: a systematic review with meta-analyses. Semin Arthritis Rheum. 2017;47(2):204-215.
2. Yuen EP, Bagley JR. Exercise benefits and considerations for individuals with systemic lupus erythematosus. Strength Cond J. 2016;38(6):69-75.