Q. I have been diagnosed with Myasthenia Gravis. It’s affecting my speech, swallowing, and general head, neck, and arm strength. Are there certain activities that I should modify or avoid? Which type of exercise can I perform in order to improve my function? –Owen
A. Thanks for your question, Owen, as it presents an opportunity to discuss a very devastating autoimmune disease, Myasthenia Gravis (MG). Your willingness and desire to maintain your strength and physical function despite the disease is an encouragement to others who may be suffering as well.
Approximately 50 million Americans (20 percent of the population or one in five people) suffer from autoimmune diseases. Women are more likely than men to be affected. Some estimates state that 75 percent of those affected are women.
Myasthenia Gravis (MG) is one of many different types of autoimmune diseases such as Rheumatoid Arthritis (RA), Multiple Sclerosis (MS), and Amyotrophic Lateral Sclerosis (ALS, which is also known as Lou Gehrig’s Disease).
An autoimmune disorder occurs when the body’s immune system attacks and destroys different parts of the body because it has confused itself with a foreign body or invader. The body’s own immunogenic response against itself is a challenging and difficult problem to fix. Although there are many different and evolving treatment methods, most (if not, all) autoimmune disorders are not curable.
In the case of MG, it’s considered a neurologic autoimmune disease because the immune system attacks the nerves that control certain muscles of the body. Symptoms of MG vary wildly and sometimes can be quite severe. Symptoms may include:
- Muscle weakness
- Drooping of one or both eyelids
- Double vision
- Altered speech
- Difficulty swallowing
- Problems chewing
- Limited facial expressions
- Weakness in your neck, arms, and legs. (If the neck is weak, it may be hard to hold up your head.)
Proper medical management is critical in all cases of autoimmune diseases. Those diagnosed with MG (or any other autoimmune disease) should always be medically managed by a specialist in the disease. In most cases, management of MG will be overseen by a neurologist (preferably, with experience in treating MG and other neurologic autoimmune diseases).
In order to best address any autoimmune disorder, a multifactorial approach to managing the disease should be implemented. Although the condition may affect one specific aspect of your body, a healthy and balanced body will always function better and be more resilient to fight and thrive in spite of the condition. In addition, it’s important that you and your loved ones learn as much about the disease as possible.
A Holistic Approach to Managing Autoimmune Disorders (Myasthenia Gravis):
- Medical/Physician Management. Depending on the condition and triggering events, this may include pharmacological management or surgical intervention. In the case of MG, the trigger may be a tumor in the thymus gland. Your physician may order a CT Scan of your chest to screen for a tumor.
- Speech Therapy. Often with MG or other autoimmune disorders, you may develop difficulties with swallowing. I highly recommend that you work with a Speech Therapist (ST). Speech therapists are highly trained medical professionals that specialize in treating disorders that affect swallowing, speech, and cognition. They can use very specific treatment modalities from exercise to diet modification. Neuromuscular electrical stimulation (NMES) can be utilized to help the muscles responsible for swallowing improve in strength and coordination.
- Nutritional Management. Consume foods that promote a low inflammatory diet, including a diet high in Omega-3 fatty acids and other natural herbs (like garlic and turmeric) which can naturally lower inflammation. Consuming food that helps to support the immune system is important because the nervous system is affected by MG and other autoimmune diseases. This includes a diet high in Omega-3 fatty acids and having adequate Vitamin D3 levels. Include foods that support the nerves and are typically high in good fats such as avocados, coconut oil, and healthier fish (such as sardines and wild caught salmon). If you’re experiencing difficulty with swallowing, be sure that your food is prepared in such a way that you can safely eat and that it’s in accordance to advice from your speech therapist.
- Weight Management. It’s important to manage your weight effectively. Excessive body weight can cause additional stress on the body. Whenever possible, work toward optimizing your health. This includes maintaining a healthy body weight. Depending on the autoimmune disease and your body in particular, this may also mean maintaining enough body weight.
- Activity Modification. As the disease progresses, it’s important to understand how your body is functioning, and then learn how to adapt to manage the disease. Unfortunately, certain activities and how you perform them will need to be modified or avoided. Learn to pace yourself and take more frequent rest breaks. Adequate night time sleep is also critical. If any of your joints are affected, learning to limit the use and strain on them will be important. Utilize adaptive devices (such as a cane) in order to limit the strain placed on your body during activities. An assistive device will allow you to be mobile and will reduce your risk of falling.
- Modalities. This is a broad category, but there are many ancillary treatments that can be utilized to help you feel more comfortable. The good news is that they rarely have associated side effects. In general, the application of heat, cold, or over the counter (OTC) topical agents, such as Arnica Montana (an herbal rub) or Biofreeze, may help you to manage pain and stiffness. Gentle massage and TENS (Transcutaneous Electrical Nerve Stimulation, a form of electrical stimulation performed by a physical therapist) may also be beneficial for pain relief. TENS is different than the neuromuscular electrical stimulation (NMES) used by speech therapy. TENS is used for pain control only.
- Limit Stress. Often in cases of autoimmune disorders and in particular, MG, poor stress management will lead to worsening symptoms. The ability to effectively manage stress will be critical in managing your symptoms. There are many different methods to help you manage stress more effectively. Common methods include: meditation; journaling; deep breathing; Tai Chi; and yoga. You may also need to reconsider certain friendships and relationships in your life. The key to effectively managing stress is to find an enjoyable activity, and then stick with it. This is a process–a journey (not a destination).
- Exercise. Implementing exercise in order to promote general health will not only help you to feel better, but it will optimize your well-being during this very difficult time.
- Strength Training. Strength training is encouraged, and the exercise program should be established by a professional who is familiar with managing MG. All exercises should be performed in a slow and controlled environment within the available range of motion (ROM). Maintaining muscle mass through strength training is critical and should be performed only one to two times per week to minimize any risk of over fatigue.
- Endurance Training. Endurance training is critical for general health and should be included as part of a comprehensive exercise program for individuals with MG. Focus on less impact activities such as bicycling, rowing, and water aerobics. Avoid excessive fatigue.
- Flexibility Training. Flexibility training is important for everyone as part of a healthy lifestyle. Take every joint through a full ROM at least once a day. I highly encourage a regular two to three times a week flexibility program in addition to a daily ROM program. Tai Chi and yoga both also address aspects of strength and balance and are wonderful for managing stress. Other options include: Pilates; water aerobics; and a stretching routine.
- Aquatic Therapy. Water can also be very useful in pain control and help with relaxation. Many find that performing a regular exercise program in an aquatic environment can satisfy most exercise needs, including flexibility and strength.
Managing an autoimmune disorder, such as MG, is difficult and everyone’s journey will be different. Your specific treatment protocol should be individualized based on your specific condition, how the symptoms are affecting you (which will vary over time), and your current health status.
Thanks, Owen, for the question. I hope you find this information to be helpful as you manage your condition.
What has your experience with managing autoimmune disorders been like? Are there any treatments that have or have not worked well for you? Additional discussion can help others to manage these difficult diseases as well. Please leave your comments below.
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