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Getting Exercise and Keeping Physically Fit While Living with Lupus

Adapted from a talk to the SLE Workshop at Hospital for Special Surgery

Karen Yanelli PT, DPT, Cert. MDT
Owner and Operator, M.Y. Physical Therapy, PLLC

Introduction

Exercise has numerous benefits to help maintain vitality and increase life expectancy, regardless if you are living with an autoimmune disease. Studies show that for individuals with lupus, regular exercise improves one’s ability to function independently. People who exercise report on having a better self-image and are better able to cope with arising challenges. Exercise helps reduce fatigue from lupus and overall fatigue from life in general. It can help decrease depression and anxiety, especially for those populations with chronic illness.

Physically, certain kinds of exercise can also help keep healthy bones strong, decrease the risk of getting osteoporosis and help maintain muscle strength. Exercise has been shown to help improve sleep, control weight, reduce the risk of diabetes and high blood pressure, and lower the risk of stroke and heart disease. It can improve one’s sense of balance, which is important for those individuals who may be at higher risk for falling.

Is It Safe to Exercise with Lupus?

In general, exercise, under the guidance of a physical therapist, and following a discussion with your doctor, is not only safe, but can be of benefit to those that are diagnosed with lupus. Studies show that exercise training can lessen inflammation in women with systemic lupus erythematosus. In one particular study, the effects of an exercise training program on cytokines on soluble TNK receptors (nTNFRs) were assessed in response to acute exercise in women with SLE and women without SLE.1 After a 12-week aerobic exercise program, there was a noticeable difference in some individuals, which revealed that exercise benefits the immune system and does not trigger inflammation in lupus, even if the individual is going through a flare-up.

Preparing to Exercise

There are certain considerations to take into account before someone with lupus starts exercising. Often with autoimmune conditions patients may have secondary health problems, such as arthritis or a cardiac condition that may prompt concerns regarding safety around performing certain exercises. It will be important for your doctor and physical therapist to take your entire medical history into account before approving an exercise regimen or program.

What to expect from a physical therapist

When looking for a physical therapist, make sure to find one that has treated someone with a similar condition before. Confirm that they know how to appropriately treat patients with autoimmune disease. In situations with autoimmune conditions, it is necessary to have a good amount of individual care. Prior to seeing the doctor, ask the receptionist how many patients the physical therapist sees within an hour. If it is more than two, it is recommended that you find a physical therapist that can devote more in-person treatment time to each patient. While seeing several patients within an hour is acceptable for typical post-op patient care, the nature of lupus and its effect on one’s ability to function on a daily and sometimes hourly basis requires individualized treatment and check-ins.

When you decide on a physical therapist, the in-office visit will most likely begin with a testing of your mobility, physical and functional limitations. Strength testing, range of motion testing, balance testing, and a functional activity evaluation will give the physical therapist a general range of reference for your baseline capabilities. He or she will then use this information for future follow-up visits and when determining your treatment plan. On day 1 you will be setting expectations and goals for the therapy. As with any chronic illness, setting expectations with lupus is difficult, because often the individual will want to get back to his or her level of functioning prior to the lupus diagnosis. Reasonable expectations should be given on day 1 so that you know what outcomes to expect in the next 6+ weeks from participating in physical therapy. Your physical therapist will be focusing on your achievement of obtainable goals using exercise as one of the main prescriptions. You will also be assessing together how viable it is for you to do these exercises, given the timeframe and your personal limitations, without the direct oversight of the doctor at all times.

Types of Exercise

The types of exercises that are typically prescribed by a physical therapist include aerobic, non-aerobic, aerobic plus non-aerobic. There are also gentler conservation exercises that are generally range of motion exercises including stretching and isometric contractions. Aerobic exercise is based on elevating one’s heart rate. (Non-aerobic exercise aims to strength-train without needing to raise one’s heart rate significantly.) Aerobic combined with non-aerobic exercise is called circuit training and works to keep your heart rate up while you do muscle training. Lastly, stretching and isometric contraction work is light exercise, and generally good for individuals as a starting point.

Heart health and aerobic strength is currently being studied to show the benefit that exercise has on one’s overall vitality. According to the US Department of Health and Human Services, adults should obtain at least 150 minutes of moderate-intensity physical activity a week to have “substantial” overall health benefit. This can be accomplished by 30 minutes of activity per day, 5 to 7 days a week. This recommendation has also been stated by the Centers for Disease Control and Prevention (CDC) and the American College of Sports Medicine (ACSM). Remember that this is a long-term goal. If your schedule is so limited that you can realistically only go to the gym three days a week or are currently experiencing lupus fatigue, it would be unreasonable to assume that you will be able to exercise for 45 minutes at a time in the beginning. A more feasible amount of time to start would be ten minutes, which has been shown by the American Heart Association to be enough to build up a little bit of cardiac strength. Ten minutes, three times a day is just as beneficial to your heart as 30 minutes in a row. You can also do 15 minutes in the morning and 15 minutes in the afternoon for equal benefit. Energy will improve when you work out, but it takes roughly three weeks to get over the hump of exercise fatigue.

Benefits of aerobic exercise

Studies support the use of appropriately prescribed graded aerobic exercise in the management of patients with fatigue and systemic lupus erythematosus. Some workouts to recommend when starting out are beginner level class-based, low-impact activities and exercises such as dance or bike riding and aquatics. The elliptical, arm bike and arc trainer are some low-impact aerobic exercise machines that can improve cardiovascular health. With the side effects that can occur with taking corticosteroids, avoid the treadmill and the stair trainer, as the force of impact associated with these exercise machines can contribute to the breaking down of cartilage in the joints.

Strength training with lupus

With the use of steroids, it is important to keep your muscles strong. Non-aerobic exercise prescriptions that can help with muscle strength include free weights, hand strengthening exercises using putty, stress balls or a gripper, repeated functional exercises such as going from sitting to standing, and the use of weight machines and elastic resistance bands. If you are feeling strong and want to maximize a short amount of time, try to incorporate circuit training. Circuit training is alternating between strength training and cardiovascular strengthening, like moving from the elliptical to free weights for ten minutes at a time.

Gentle exercises and stretching

Isometric exercises involve gentle muscle contractions that can occur without moving the joint, such as a quad set. These movements are possible if you are having a flare-up because you are not moving your joints as much as with other forms of exercise. Some calming stretching and range of motion exercises include modified yoga or chair yoga, tai chi, dynamic warm-ups to help prepare the body for movement, and stretches for individual muscles. Tai chi has been proven to improve balance, increase the serotonin in your body leading to a decrease in depression, and can help decrease anxiety. For stretching, only holding the poses for 10 seconds, three individual times in a row is sufficient.

Pain with Exercise

If you are experiencing a flare, do not attempt moderate or high-intensity exercise. If you do not know what level of exercise you are engaging in, try the “talk test” when exercising. If you are able to articulately say the alphabet from A to Z with no interruptions as if you were speaking to a person next to you in conversation, then you are below the high intensity threshold. Conversely, if you have trouble speaking the alphabet, either having to take a break or find yourself panting, this signals that you should slow it down. If you experience any type of unfamiliar pain during exercise, stop and tell a professional. Unfamiliar pains include shooting pains or muscle soreness lasting more than three days.

Relaxation/Respiratory Training

Sometimes exercise will affect the respiratory system. A breathing exercise to help strengthen the muscle is diaphragmatic breathing techniques in different positions. You should find your diaphragm by placing your hands on the base of your ribcage, and inhale and exhale with forced exhalation. Forced exhalation triggers a response to take a deep inhalation and triggers neuromuscular retraining. This should be done a few times every hour. In studies, people who partake in a strict diaphragmatic breathing program for three weeks are shown to develop a 70% to 80% stronger diaphragm, just through re-educating the muscles. Joint approximation, which brings joints in your appendages closer to one another, communicates to your brain to release the muscle and to relax the pain response. Standing up if you are having joint pain while sleeping is one easy way to do this. Lastly, slow velocity movements like purposeful movement (being aware of every move) can signal your muscles to contract more efficiently and make you less fatigued.

Balance Training

The effects of balance training are to enhance functional independence through proprioception and coordination. Proprioception is the awareness of one’s various parts of the body and the strength being employed in movement. Functional independence can be obtained with:

  • Posture awareness training: Anytime you pass a mirror, glance at yourself and adjust your posture.
  • Sensory training: You can practice by sitting in a chair, holding your posture upright, closing your eyes, and challenging yourself to sit still for a minute without swaying or losing balance.
  • Task-specific performance training: Repeated actions re-educate your brain, forming pathways to make activities of daily life easier. If you are struggling with a task, such as picking up a fork, practice this task repeatedly first on solid ground and then with conditions like walking towards the fork and walking away from the fork.

An easy way to test your baseline standard for balance is to conduct a single leg stance. You will want to stand with your arms across the chest and legs not touching each other, ideally with your shoes off. Stand on one leg without either legs or arms moving from the start position. The norms for each age group on how long they should be able to stand on one leg are below. The test is stopped if you have trunk sway or if you put your hand or leg down to ground you. Try this test three times and take the best number of seconds out of the three. Your aim is to get to 10 to 20 seconds regardless of age.

  • Age 18 to 39: 43 seconds (plus or minus 5 seconds)
  • Age 40 to 49: 40 seconds (plus or minus 10 seconds)
  • Age 50 to 59: 37 seconds (plus or minus 12 seconds)
  • Age 60 to 69: 22 seconds (plus or minus 8 seconds)
  • Age 70 to 79: 14 seconds (plus or minus 9 seconds)*
  • Age 80 to 89: 6 seconds (plus or minus 8 seconds*
    *Test for fall risk
 

After Discharge from Physical Therapy

After you complete therapy, when your fatigue is down and you feel stronger, it is important to continue with your exercises to keep up your new level of vitality. Joining a gym would be ideal. A wellness group program, such as the one found in the HSS Orthopedic Physical Therapy Center. You pay a small fee per session to work out with a supervisor. A clinic technician or physical therapy assistant is there to set up the equipment and support you should you have questions or concerns relating to your exercise. Signing up for exercise classes or exercising with a friend helps promote motivation and adherence to your exercise regimen. Lastly, exercising at home is an easy, economic way to continue with your treatment plan.

Here is a link to the recreation centers managed by the New York City Department of Parks & Recreation. The department also sponsors a city-wide program called Shape Up NYC, which organizes free seasonal workout classes, such as aerobics, cardio-kickboxing, Hatha yoga, etc.

HSS also offers many low-cost exercise classes, see Education to Empowerment. We hope that you find these resources helpful; they are provided for informational purposes only and are not intended to comprise a complete list. Links to sites are not meant as endorsements or recommendations by HSS or its faculty.

Learn more information about the SLE Workshop at HSS, a free support and education group held monthly for people with lupus, their families and friends.

1 Perandini LA, Sales-de-Oliveira D, Mello SB, Camara NO, Benatti FB, Lima FR, Borba E, Bonfa E, Sá-Pinto AL, Roschel H, Gualano B. Exercise training can attenuate the inflammatory milieu in women with systemic lupus erythematosus. J Appl Physiol (1985). 2014 Sep 15;117(6):639-47.

Summary by Sarah Kencel
Social Work Intern and Coordinator, SLE Workshop
Department of Social Work Programs


 

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