A common medical opinion regarding LEMS patients is that a completely sedentary patient can develop muscle atrophy or even deconditioning syndrome, so some amount of physical activity is required to avoid these conditions. However, too high a level of activity, which may be defined differently for different patients, can be detrimental (e.g., causing the patient to be weaker and more fatigued than usual the next day). In part of a recorded Muscular Dystrophy Canada podcast on LEMS, two neurologists who treat LEMS patients discuss this topic (go to 43:22 of the video). 

Scientific studies on the benefits of exercise specifically to LEMS patients do not appear to exist. However, multiple studies have provided good evidence that regular structured aerobic and resistance training can improve the muscle strength and overall quality of life of patients with mild and moderate myasthenia gravis, and that regular respiratory training can improve their respiratory function and reduce fatigue [11]. 

Physical Therapist or Physiotherapists are health professionals who perform manual therapy and design physical training programs for patients with injuries or diseases. Some members of the LEMS meeting group have reported good results from working with physiotherapists who have knowledge of neuromuscular diseases or who are receptive to learning about LEMS from the patient. One member has reported being pushed to a too high level of activity by a physiotherapist with no previous experience of working with myasthenia gravis or LEMS patients. 

An online DxCheck article gives an overview how a physiotherapist may work with a myasthenia gravis patient. This information may be relevant to LEMS patients. 

Hydrotherapy, or aquatic therapy, is a form of physical training that involves performing exercises in a pool of warm water. This is sometimes prescribed by a physiotherapist, and has been recommended as a treatment for LEMS patients. However, heat can exacerbate the LEMS symptoms of some patients, and one member of the LEMS meeting group has reported trying hydrotherapy and finding that the water temperature caused increased muscle weakness.

Occupational therapists teach techniques to disabled patients that help them perform necessary or desired daily activities to which the disabilities are an obstacle. These techniques include physical exercises, planning, modification to living spaces, and the use of adaptive equipment. Some LEMS patients have difficulties with activities such as getting dressed, showering, and cooking, even while receiving neurologist-prescribed treatments. Occupational therapy has been recommended for such LEMS patients.

An online MG United article gives examples of techniques to help myasthenia gravis patients that were recommended by an occupational therapist who has that disease. Such techniques may also be helpful to LEMS patients.

A LEMS patient can experience muscle weakness in the head and neck that causes problems with speaking, chewing and swallowing, even while receiving neurologist-prescribed treatments. Speech therapy treatments provided by a speech language therapist have been recommended for LEMS patients who have these symptoms. However, there appears to be no published scientific studies on the effectiveness of these for LEMS patients.

Chronic inflammation is inflammation that persists indefinitely rather than lasting only long enough to respond to a specific injury or infection. There is growing evidence that chronic inflammation is connected to the development of autoimmune diseases by damaging adaptive immune cells. This has led to recent research on drug therapies that target inflammatory molecules as a treatment for autoimmune diseases, including myasthenia gravis [12].

Some lifestyle factors, including diet, have been shown to cause chronic inflammation [12]. Therefore, diets that are modified to exclude inflammatory effects and include anti-inflammatory effects (anti-inflammatory diets) [13] have been proposed as a drug-free way of treating autoimmune diseases, including LEMS.

General guidelines of foods to include and exclude to achieve an anti-inflammatory diet are widely published (e.g., [14]). The autoimmune protocol diet (AIP) is an alternative approach to defining an anti-inflammatory diet that is motivated by the belief that the same diet may not be optimal for everyone. The AIP is based on first eliminating from the patient’s diet for a period of 6 weeks to 6 months those foods that have a high likelihood of being autoimmune triggers. Then, excluded foods are gradually reintroduced over a period of 1 to 3 months. If a reintroduced food coincides with increased disease symptoms it is excluded from the final diet. There is limited evidence that an AIP-defined autoimmune diet alleviates symptoms of autoimmune diseases [15].

The AIP is practically challenging and requires professional guidance and monitoring to ensure that the patient receives all required nutrients and to identify any emerging health issues during the process. No member of the LEMS meeting group has indicated having used the AIP.

There appears to be no published scientific studies on the effectiveness of autoimmune diets for either myasthenia gravis or LEMS patients.

A recent study compared the quality of life for LEMS patients to that of the general population and of myasthenia gravis patients and found that it was lowest among LEMS patients, with generalized anxiety and depression prevalent (the study involved 46 LEMS patients, 92 myasthenia gravis patients, and 92 people from the general population) [16]. 

Generalized anxiety and depression are serious conditions. They can greatly reduce the quality of life of an individual, and depression can lead to suicide. They may be driven by chronic stress, which can exacerbate an autoimmune disease, so reducing life stressors is an important part of treating these conditions and an associated autoimmune disease.

A Myasthenia Gravis News article discusses how living with myasthenia gravis can lead to generalized anxiety and depression, and provides advice on coping strategies, lifestyle changes, counseling and therapy, support groups, and handling mental-health emergencies. This advice may also be relevant to LEMS patients.

As described in the aforementioned article, social connection and emotional support help people cope with generalized anxiety and depression. Members of the LEMS meeting group generally find the group video conferences to be a source of this, in addition to being a source of information. Some LEMS patients find social connection and emotional support though the LEMS Support Facebook group.