Q&A with Dr. Betsy Blazek-O’Neill: Exercise and Lupus

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. I was wondering if exercise can trigger a lupus flare and if so, how much is too much exercise? Melbourne, Australia

In general, exercise helps the body control harmful inflammation, but it is always possible that over-exercising (for you) could cause a flare of symptoms, especially joint symptoms. The amount of exercise that would be a problem would vary for each person. The best thing to do is try low-impact exercises like walking, biking, swimming, tai chi, and/or yoga--starting slowly and increasing gradually. You have to pay attention to how your own body responds to exercise type and intensity, and find what works for you. Remember that sometimes the symptoms won't show up until a day or two after too-vigorous exercise. Making exercise a regular habit could lessen the chances of flares related to exercise that you are not used to.

2. Is there a fitness plan specifically for people with lupus? If I do too much then my knees swell. How do I find the balance? New Milford, CT

There is no fitness plan specific to people with lupus, but the Arthritis Foundation does offer a program called "Tai Chi for Arthritis" that is an excellent choice for patients with lupus (or people with other joint problems). This program modifies tai chi exercises to be especially kind to joints, like knees, that might have difficulty with other forms of exercise. You can find locations with that program on the Arthritis Foundation website. The best exercise types for people with knee problems would be low-impact exercises like walking, swimming, and biking. Finding the right balance for you involves trying a few different types of exercises, starting slowly and building up slowly until you find a level of exercise that seems to give you the benefits of a fitness program without causing pain and swelling. You may also have to decrease the duration or intensity of your exercise plan occasionally when you are having symptom flares related to other things.

3. I have lupus but it has been very hard for me to lose weight. I am not on steroids. I work out at least three days a week and watch what I eat. Can you tell me if having lupus is keeping me from dropping the pounds? Mesquite, TX

I am not aware of anything about lupus itself that leads to weight gain. You are doing a great job with your exercise program, especially if your sessions three times a week are at least 30 minutes long and include a significant portion of aerobic exercise--the type that gets your heart rate up, like fast walking, biking, and swimming. (Weight lifting is also very good for overall health but will have less of an effect on weight loss.) Many people think they are doing a good job with their diet, but a closer look will reveal an excess of carbohydrates that is often behind persistent weight gain. I hope you try to avoid processed foods, as these contain many ingredients that stimulate appetite and foster weight gain. If you are eating healthy whole foods (foods more like how they started out--fresh vegetables and fruits, whole grains, high-quality meat and dairy sources) you might want to look at the amounts of carbs you are eating: pasta, rice, breads, sugars-- even whole grains can lead to weight gain if you are eating too much of them. Make sure you are getting enough protein, and try to eat small portions of carbohydrates. Also remember that a healthy weight for you might not look the same as that wafer-thin model on a billboard. Marketing materials often promote a concept of the human body that has little basis in reality for most of us.

4. I was diagnosed in August and am currently on 40mg of prednisone. I've gained 60lbs or so in 9 months but no matter how much walking I do (I get in about 5 miles a day), I can't seem to stop gaining weight let alone begin to lose it. Is there any kind of exercise other than walking which might help to keep me from at least gaining more weight? I've been trying to keep it low impact in order to prevent my lupus attacks? Is it even possible to lose weight while being on such high doses of prednisone? Painesville, OH

It might be very difficult to lose weight while on such high doses of prednisone. The drug makes you retain water weight regardless of your food intake, and stimulates appetite, especially an appetite for carbohydrates, salt and fats. You are doing an excellent job with your walking program, and please don't stop because you are discouraged. You would weigh more if you weren't walking, and you need exercise for overall health. Walking is an excellent choice because it is low-impact as you say. Biking and swimming are two other good choices, and it is possible that some cross-training (using different exercise types on different days) could help some. Work with your physician to see if your prednisone dose can be gradually lowered or even stopped eventually. In the meantime, do the best you can by trying to eat healthy foods and staying active.

5. I was diagnosed with lupus while training for my first marathon six years ago. I have since competed in over 100 miles of road races and try to run at least 6 times a week. (I am very careful to wear sun protection!) I love how it makes my body feel empowered and healthy. But some days I have very bad joint pain before exercising. This pain goes away after my first few minutes of movement but I was wondering if I am doing any damage by “running through the pain”? I feel so much more mobile and flexible after runs on those days. Nashville, TN

Sometimes joint pain can be related to stiffness, which will improve once the person starts moving around or exercising. As long as you don't get much pain during or after exercise, you are probably not hurting your joints, but you should let your physician know so that he or she can examine your joints for any signs of trouble. Running is a high-impact activity that not all lupus patients will be able to tolerate.

6. Other than the obvious injury or exhaustion are there signs to look for that would indicate I am overdoing my regular exercise routine or exercising in a manner that could be detrimental? What should I be looking out for? Fairfax, VA

Signs that you are exercising in a harmful way would be pain during or after the exercise session that is more than just the usual type of muscle soreness. Joint pain in particular, especially during exercise, would be a warning sign. Any swelling that would occur during or after exercise would also be concerning. Also, any increase in your other lupus symptoms, if you have any, would be a concern.

7. I do gentle stretching during a flare; it's all I can manage. How soon after a flare can I restart my low impact cardio and machine weights? Chattanooga, TN

This will vary from person to person. You are doing a great job to continue some stretching during a flare. You will have to experiment a little to find the right timing to resume exercise. Some people can resume exercise, maybe at reduced duration or intensity, while the flare is receding. Others will have to wait until symptoms are completely gone. It is usually best to resume exercise in a gradual fashion. You can try a little bit of exercise when you are starting to feel better, but if that is too difficult or causes symptoms to start returning, you will have to wait longer. Some trial and error will be needed, and it may even vary with the severity of the flare. Sorry--no standard formula here!

8. Every morning when I wake up, I have stiffness in my hands/fingers along with swelling in the hands and sometimes up the arm. I stretch every morning to get myself going. I stretch my hamstrings and so forth. Each morning you would think that my flexibility would improve, but it is as if I am stretching for the first time in months every morning. Why is that? Any recommendations? Mesa, AZ

I'm not sure if you've ever been told you have joint problems related to lupus, but it is very common for people with joint problems to develop stiffening overnight that improves once they get up and start to move around. This happens in other arthritis conditions besides lupus, too. The stiffness seems to be related to the inflammation, such that the joints sort of "gel" during periods of inactivity. It is possible that inflammation also affects the muscles themselves, so that even the muscles will tighten up when inactive.

9. I'm 30 years old. I had a severe lupus flare after childbirth in 2010. Among other things I also had Libmann-Sachs endocarditis. Do I have to worry about my heart rate during exercise? Is there a recommended heart rate range? Slovenia

If you have had endocarditis or any other heart problems you should definitely check with your cardiologist or rheumatologist for their precautions about exercise. They will want you to exercise regularly, but they may ask you to avoid certain levels of intensity. Your own physicians should determine this based on your previous medical course.

10. I am in decent shape. Why am I so exhausted, inflamed, and why do my muscles twitch after a long walk or other form of exercise? It is very hard to keep healthy when it's one step forward, three steps back. Northville, MI

First of all, most people with normal health will have muscle twitching in their legs after a long walk or other form of exercise. That is probably normal. Exhaustion and inflammation are not normal except with very vigorous exercise, so these may be related to your lupus. The exhaustion may result because your body is working hard over-producing inflammation when you have lupus, and then you ask it to exercise too, so energy stores are used up more quickly. If lupus already causes inflammation in your body, exercise on top of that may lead to more inflammation. Are you sure you are not exercising too vigorously? The best exercises for lupus patients are walking, biking, and swimming, because they are low impact forms. If you are using some type of high-impact exercise (jogging, jumping sports, etc.) you may want to consider a less jarring type. If you are already doing low impact exercise, perhaps the duration is too long or you need rest breaks during the exercise session. Please give yourself credit for working hard to stay in shape. Maybe just some minor modifications could make it more comfortable for you.

11. What should I tell a physical trainer at a gym regarding lupus and physical exercise? Saint Petersburg, FL

This would depend on how your lupus affects you. If you have specific joint issues, you should let the physical trainer know about those so he or she doesn't ask you to do things that would irritate those areas. If fatigue is a problem, let them know that you may need frequent breaks or may need less vigorous exercise. If you are having a flare, you should definitely let the trainer know that you probably need to go easy until the flare is over.

12. I have been doing Yoga and Tai-Chi for approximately 15 years, about the entire time I have had lupus. In the last few years, I have found myself pulling or tearing a muscle. I continue with modifications while I recover. Each time I injure myself, I am unaware of how or when exactly I injured myself. Performing such slow and controlled movements for so many years which require body-mind centering and focus, I am perplexed as to how I have been unaware as to what caused such severe injury, to the point of once having to be admitted to hospital for an intravenous anti-inflammatory and observation. Any insight would be appreciated. Long Beach, CA

Lupus itself can cause muscle weakness and muscle inflammation, and both could contribute to muscle tearing or strain, quite possibly with exercises or movements that would not cause a problem for someone without lupus. Steroids like prednisone can also weaken muscle, if you have been treated with these. Yoga and tai chi would still be good choices for you, as long as the yoga does not require you to push or strain into movements or postures that are difficult for you. There are modified tai chi programs such as "Tai Chi for Arthritis" sponsored by the Arthritis Foundation, that would be particularly good for you. I wouldn't give up on exercise, but do the best you can with gentle forms of exercise like you have chosen.

13. I was very active before my lupus diagnosis, and I've noticed since my first flare I'm not recovering normally. It seems like it takes longer to recover and that if I try exercising too soon I fatigue early. It's causing a lot of trouble with building endurance. Is this common in lupus? Are there any studies on endurance in lupus patients? And is there anything I can do to train more effectively as an athlete with lupus? Yakima, WA

There have been studies that show that lupus patients who exercise regularly are able to increase their endurance, but generally these are people who were not very active before the study was started. If you have been very active in your life before your lupus diagnosis, it is possible that you may not tolerate the same intensity and duration of exercise that you could do before. It is important to pay attention to symptom flares, and learn for your own body when it works to resume exercise. The best option is to reduce the intensity and duration of exercise during a flare but maintain some type of movement and gentle stretching. When you resume exercise after a flare, it is best to do so gradually. Sometimes an athletic personality type will have difficulty with this type of activity modification, but if you are able to be kind to your body during a flare you will generally be able to do more sooner. Regular exercise generally benefits lupus patients, but over exercising is not very well tolerated except in patients with very mild disease. Are you choosing low-impact exercise forms such as walking, biking and swimming? Higher-impact activities are generally less well tolerated.

14. I've talked with my doctors who have said it's OK for me to exercise, but my body feels consistently tired with an assortment of discomforts in my joints and muscles. Because of this I am apprehensive to start an exercise plan in addition to the fact that I do not have the energy. Do you have any suggestions on how I can overcome my tiredness and discomforts so I can exercise? Columbus, OH

It may be helpful for you to know that if you can get into a regular exercise program, there is a good chance that you will experience less fatigue overall. It sounds like in your particular situation, you need to pick a low-impact activity like walking, biking, or swimming, and start very gradually and increase slowly. Tai chi would also be an excellent choice for you, because in addition to exercise, there is a relaxation and stress management aspect. The Arthritis Foundation sponsors a class called "Tai Chi for Arthritis" that is offered in many cities in the U.S. and would be an excellent choice. Perhaps you could begin by walking for 10-15 minutes per day during the time that you usually have the most energy. When you feel able, you can start to increase by 5 minutes per day every few days or week, until you get up to 30 minutes or more of walking per day. Sometimes it is also helpful to split it up into two shorter sessions per day, such as 15 minutes in the morning and 15 minutes in the evening. Studies show that exercise does not have to happen all at once for benefits to result. Start with what you can handle and increase slowly. Try to pick something you enjoy so you will stick with it. Make it part of your daily routine, and usually before long you will feel better and look forward to it.

15. What is the best way to deal with exercising outside? During the summer months it is just too hot to wear long protective clothing but I love to do outdoor activities such as running or biking. Washington, DC

A good sunscreen can make outdoor exercise easier for lupus patients. This should be SPF 50 or greater, and may need to be reapplied if you are outside more than a few hours. Exercising outdoors early in the morning or later in the evening may work, when the sun intensity is less. You may also be able to find shaded outdoor areas that would work well, such as wooded paths, as long as they are safe. Exercising outdoors often has a mental health benefit that is superior to indoor exercise, particularly if it brings you in contact with nature, so you are smart to look for ways to do this.