I’ve had the privilege of training with a lupus patient for just over a year now, and it has been both a challenging and rewarding journey. The objective of this article is to share some of my initial questions and advice for coaches new to clients with lupus.
 
Lupus is an autoimmune disease that can damage any part of the body such as skin, joints, and organs. The immune system normally produces antibodies to fight foreign invaders such as viruses, germs, and bacteria. In lupus, however, the immune system cannot tell the difference between these foreign invaders and healthy tissues. As a result, the immune system creates antibodies that attack healthy tissue and causes flare-ups within the body. Lupus affects mostly women of childbearing age. However, men, children, and teenagers develop lupus too. Most people with lupus develop the disease between the ages of 15 to 44. Once diagnosed with lupus, the goals of any treatment plan are to mainly reduce inflammation caused by lupus, minimize damage to organs, and control symptoms like joint pain and fatigue.
 
It is important to realize that systemic lupus erythematosus (SLE) is both a complex rheumatic disease of unknown etiology and that it has a psychological element as well. The heartbreak of finding out you have a chronic autoimmune condition for no known reason is almost impossible to imagine. What is known is that the widespread potential for harm in the body and the unpredictable nature of SLE often leads to anxiety. In turn, the more depressed a patient feels, the greater their disability. It has been reported that SLE patients exercise noticeably less than the general population.
 
Generally speaking, a vicious cycle may occur when fatigue and depression cause patients to remain in a sedentary state which then further impairs their physical condition, leading to more fatigue and depression. I hope this sheds some light on the critical role of a coach in ensuring SLE patients do not stop training completely. The main role of the coach or trainer is simply to help improve the client's quality of life through effective routine management.
 
The use of complementary and alternative medicine is common among SLE patients. It is beneficial getting feedback from professionals that can advise from their own field of expertise. With the client’s consent, working alongside either an osteopath or some form of a therapist is an ideal scenario. This means that the client has a team of individuals with different perspectives in place, working together for the client’s well-being.
 
As with any client, it’s important to give them ownership of their own training. Adherence to the training program can be particularly difficult with SLE clients. This is because the level of workload and quality will be highly determined by how he or she is feeling at that point in time. Ultimately, a coach can anticipate mood swings. It is fundamental to remain professional and not take these situations personally. At the same time, endeavor to be empathetic and genuine. Common sense would suggest all of this, but it is always a good reminder, including for myself.
 
Is there a place for periodization among SLE clients? Often there isn’t due to the erratic inflammatory responses. However, dependent on SLE severity and specific training goals of the client, periodization can sometimes be beneficial. It is important to have clear direction with training. Having goals for the client in mind aids the process of exercise selection and makes monitoring progression easier. Despite the setbacks that may be faced, setting targets to be achieved in training will also provide a lying undertone of positivity for each training session and help with motivation and determination of the client to keep moving forward.
 
So, what does scientific based research have to say about physical exercise and its implications on the disease activity itself? From the few existing studies available, results indicate that training does not elicit any change in disease activity or organ damage. Both aerobic exercise and resistance training are safe in patients with low-to-moderate disease activity and low disease severity. There are more long-term studies required on this topic.
 
Nonetheless, there are numerous studies indicating strong reasons for patients with SLE to be physically active and avoid living sedentary lifestyles. Potential benefits include: improving quality of life, reducing fatigue, reducing sleep disturbances as well as attenuating obesity and osteoporosis. As previously mentioned, the individual’s severity of lupus massively limits what the client is able to perform. Overall, exercise for SLE patients is highly recommended, irrespective of how light or short this may be. This can be seen as a positive step moving forward and massively outweighs any possible reason to remain inactive. In fact, according to one study, being physically inactive increases the risk of morbidity and mortality caused by premature cardiovascular disease (CVD), though, this was demonstrated to be more prevalent in patients who had older-onset SLE.
 
What is the optimal exercise protocol for SLE patients? Unfortunately, this is again very specific to each case, and the optimal exercise protocol remains unclear. Bearing that in mind, we do know that cardiovascular exercise must play an important role in minimizing the risk of premature CVD. Those of us coming from an S&C background know that it is easy to give resistance training priority and almost neglect the importance of sustained aerobic exercise.
 
An interesting study compared the efficacy of cardiovascular training versus resistance training in improving quality of life and physical function in SLE patients. Cardiovascular training was found to be superior to resistance training in improving health-related quality of life, but no significant differences other than aerobic capacity were found in the physical function aspect.
 
A nice split between resistance training and aerobic exercise it is, then. This is great news for the S&C coach. In terms of training intensity, duration and frequency, I would suggest exercise of a low to moderate intensity (heart rate corresponding to around 50 percent of peak oxygen consumption), at least three to four times per week ranging from 30 up to 90 minutes, taking into consideration fatigue levels which will inevitably vary from individual to individual. People with lupus often have joint pain, and therefore flexibility training and exercises related to joint health are ideal. For example, non-weight bearing forms of aerobic exercise such as swimming and cycling can mitigate joint stress and impact. In addition, walking for short durations frequently throughout the day is an excellent way to encourage physical activity and to minimize extensive periods of sitting.
 
Personally, I am fortunate not to have a desk job but having traveled a fair bit in the last year; I’ve racked up the “sitting miles.” To combat sitting posture, I’ve gradually developed my bridge from a simple glute bridge into full body bridges with movement. I love the fact that these exercises only require your own bodyweight and can be done almost anywhere. I have found my shoulders and hip flexors to really open up while simultaneously my glutes and back have strengthened significantly. From putting the time in prehab work, I feel confident to go about daily activities knowing there is minimized risk of injury at the most vulnerable areas of my body such as my lower back.
 
Research and studies notwithstanding, SLE patients are still humans, with the same movement patterns and habits as everyone else. It is important to find a balance between training on the side of caution and doing just enough to push physical barriers and strive for continuous improvement.