Cindy Coney, a nationally recognized speaker and former national board chair of the Lupus Foundation of America, draws from her own personal experience about how to find energy to play while living with lupus.
Q&A with Dr. Hazel L. Breland - 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. This month, Dr. Hazel L. Breland, PhD, OTR/L, speaks about exercise and lupus.
1. I love walking and I know that exercising is good for your wellbeing, but what if you find yourself physically unable to get out of bed due to unbearable pain? This is how it is for me; some days I cannot even make it to the front door. Red Bluff, CA
I acknowledge that pain levels vary and affect individuals differently. Thus, I recommend that you learn more about pain and consider participating in either the Arthritis Self-Management Program (ASMP) or Chronic Disease Self-Management Program (CDSMP) for a multifaceted, non-pharmaceutical approach to being an active participant in your care. Visit the CDC website for more information on both. In the meantime, begin slow and easy with some stretches in or on the side of your bed. Additionally, move your body in its natural patterns in a repetitive motion to keep limber. Finally, consult with your doctor before beginning any exercise routine.
2. People told me that exercise would help with my severe fatigue. Every time I exercise, I get a lupus flare up. Then I’m stuck in bed and can't go to work. Exercise only hurts me and causes my joints to swell, my muscles to ache, and makes me more lethargic. What exercises would you suggest that may not cause a flare up? Garner, NC
You may want to consider low impact exercises such as yoga, Tai Chi, water aerobics, or a stationary bike. As you, engage in your planned exercise routine stay in contact with your physician to monitor your symptoms.
3. What are some ways that will help motivate me to exercise when I don’t feel so well? Holland, MA
Your desire to remain motivated in an exercise routine is admirable. Some ways to stay motivated include setting meaningful goals that suit your lifestyle and interests. Additionally, you may want to consider finding a supportive accountability and exercise partner. Moreover, journal or track all of your accomplishments, no matter how small.
4. What type of exercises would you suggest for a person with heat intolerance? Before my heat intolerance and lupus, I ran marathons, loved going to the gym, and doing outdoor activities. However, since then, I have been unable to do any exercise. As soon as my body temperature rises or I go out into the sun, I get sick. Thank you for any suggestions. Honolulu, HI
Heat intolerance poses an interesting dilemma, especially given your geographic location. Exercising in an indoor pool may be the best option. Similarly, you may consider less vigorous exercises in an air-conditioned environment; namely, yoga, Tai Chi, or use of a stationary bike. It is also important to stay hydrated while you exercise to help keep your body cool. Finally, you should definitely consult your physician regarding this matter if you haven’t already.
5. I am struggling to learn how much exercise I can do without depleting my needed energy reserves for the day. I know discovering "how much is too much" is a question only I can answer, but I would welcome tips. How do I balance, the “push” needed to extend my endurance, with, the “pull” needed to hold back, so I can get through a regular workday without exhausting myself? Brownsville, OR
I would encourage you to plan your week proactively to include exercise but you may need to exercise in short intervals rather than all at once. You will benefit from the cumulative effect of your exercise intervals. Further, you may want to consider implementing energy conservation strategies to your routine. For instance, do your most energy demanding activities in parts and after you are well rested; sit when you can, take frequent breaks, ask for assistance when available, and listen to your body as you strive to identify just the right balance between exercise and your daily routine.
6. I have noticed that on some rainy days or when the weather is bad, my joints ache. I know that is a sign of my lupus flaring up. Does that have anything to do with the weather and how do I ease this aching prior to working out? Waynesboro, VA
You are not alone in the perception that weather triggers a change in your symptoms. Patients with all types of rheumatic conditions report that weather changes worsen their joint pain. We do not know why this occurs. If you can tolerate relatively warm water you may choose to shower, soak or apply warm moist heat to the joints that ache prior to working out.
7. I have lupus and APS (antiphospholipid antibody syndrome) and oftentimes develop blood clots. In addition, I have difficulty breathing at times. What are some easy ways to keep myself active and get some sort of physical routine in without having a major complication? Kaneohe, HI
Because your health profile is a bit complicated I recommend that you consult with your physician before starting or overhauling your physical routine. Yet, I encourage you to keep mobile, stretch regularly, learn about and incorporate diaphragmatic breathing while you continue your physical routine. As you can tolerate, move in your natural body patterns repetitively, slowly then more vigorously to stay limber and to promote normal range of motion.
8. I am newly diagnosed with lupus. I have Crohn's Disease and Fibromyalgia, as well. Every time I try to exercise, my body breaks out in hives. It usually occurs after I have been power walking. My legs feel like they are on fire, are flushed and warm to the touch, and hives always appear. Is this a strange symptom of lupus that is brought on by the stress of exercise? Or could it be connected to my medication? Mercersburg, PA
My recommendation, if you have not already, is to see your physician as he/she should have a better understanding of these symptoms and may know if they are exercise or medication related.
9. Can exercise make lupus worse (For example, 30 - 45 minutes of cardio on a bike or elliptical 3 to 4 times a week)? Montreal, Canada
This is not an absolute yes for everyone with lupus. Hence, you should monitor your personal response to exercising on a bike or elliptical and adjust accordingly. Because it seems that 30-45 minutes of exercise on a bike or elliptical makes your lupus worse, maybe you would benefit from exercising in shorter increments of time to prevent making your lupus worse.
10. Are exercise bands a good alternative to weights and other higher impact exercises for those with an arthritis component to their Lupus? If so, what are some exercises that I can do? New Milford, CT
Exercise bands may be a suitable alternative to weights if you use a resistance that challenges but does not hurt you when exercising. I typically recommend moving in your natural body patterns repetitively, slowly then more vigorously. This means move your joints as they normally function with the resistance bands.
11. To stay active and fight fatigue I like to run and lift weights. All my friends who work out tell me that I need to consume enough protein for muscle health. I was diagnosed with Lupus Nephritis, but it is now under control with the medication CellCept. Since the medicine is working great, and there is no longer protein in my urine, is it okay to up my protein, or will it be an unnecessary additional strain on my kidneys? Austin, TX
I am happy to hear that your medication has helped to manage your diagnosis of Lupus Nephritis. I am not a medical doctor or a certified dietician; hence, I recommend that you consult with one or both of those health professionals for an accurate response to your question. Stay active and healthy.
12. I used to run for exercise- I enjoy it so much that I have ran 4 half marathons! But 2 years ago I started noticing running became harder due to muscle cramps in my calves which prevented me from running more than 8 minutes without a break. I was diagnosed with lupus this past summer (2014). Since then I have been struggling to find a solution to the cramps in my legs, which have progressed to cramping at rest on some days, as well. I have purchased compression socks, which helps slightly. Are people who have been diagnosed with Lupus ever able to run for exercise? Is there anything else I can do for the muscle cramps? Do I need to find another form of exercise and is there any you can recommend? Stockton, CA
Yes, people with lupus are able to run. I would be remiss if I simply said find another form of exercise but the more pressing issue might be finding the root cause of your cramping. Therefore, consult with your physician and potentially a dietician for more definitive answers about the cramping. Manage the cramping then reconsider running or other forms of exercise.
13. I suffer from multiple autoimmune diseases, including lupus. I find that while one exercise is good for one condition, it causes complications for another. For example when I swim for my fibromyalgia, it causes costochondritis (inflammation of the cartilage that connects a rib to the breastbone). And a walk tears up my knees! What is the best way to avoid this? Howell, MI
My recommendation is to explore how you may possibly modify your current exercise routine to reap the benefits yet reduce the consequences. I would say stay in the water – swim but alternate your stroke type and exercise in the water without excessive use of your arms. Finally, use moderation – swim and exercise in the water in shorter intervals.
14. I am attempting to run a ½ marathon in March for the second time. I was forced to defer from last year’s ½ marathon due to illness. It wasn't until I started training again that sure enough I got sick again and after doing research I found a possible link between running intensity, and not necessarily mileage. I seem to be ok if the mileage is 4 miles or under. I've built up to 8 miles this time in my training, but complained within minutes after finishing about not feeling well. Is it time to hang up my running shoes? Could these symptoms be related to an exercise induced lupus flare? My doctors are all bewildered and I'm pretty disappointed in my body. Obviously my lupus has been fairly mild allowing me to push myself to this point but I'm left wondering if maybe as I'm getting older (38 this year) my lupus is getting worse or am I just getting old? Virginia Beach, VA
Grant yourself some grace and stay encouraged that you are still able to run despite the fact you are not running a half marathon. Think quality rather than quantity. Similarly, it is important to maintain a good mind-body balance; therefore, focus your mind and listen to your body. Moreover, the body and lupus are complicated but to answer your question, is it time to hang up your running shoes – only you will have that answer. Nevertheless, as a health professional I am an advocate of adapting how you do what you do rather than stopping an activity completely. Finally, it is impossible to offer a definitive answer related to the worsening of your symptoms and/or your age.
15. I am a nurse and hate taking medication, but I experience severe pain as a result of my lupus. My Rheumatologist convinced me to start taking pain medications, but I still had pain, so I started physical therapy involving aquatic therapy. Aquatic therapy helped me while I was there but the pain returned once I was home. I try to do yoga type exercises at home, but sometimes even mild exercise causes me pain. I have had lupus since my 30's and I am now 57. I want to stay active, but I have no idea how to. Do you have any recommendations? Fayetteville, WV
My recommendation is stay active. You may have to redefine and even reimage what active looks like for you. Pay attention to your body and challenge it within your tolerance level for various forms of exercise.
The best part about warm weather is our renewed ability to enjoy outdoor activities. However, it’s best not to jump right into a rigorous exercise program. This is a good time to ease your body into the idea of working out. Learn key tools that all people with lupus should know about exercise.