Living With Myasthenia Gravis

What makes myasthenia gravis (MG) challenging is that it’s a chronic condition. This autoimmune disorder, which causes muscle weakness and fatigue in multiple body systems, cannot currently be cured outright. Even though symptoms can be managed medically, those with the condition have higher rates of stress and depression.

Despite the challenges, there’s a lot you can do to cope with MG. Dietary and lifestyle adjustments as well as physical therapy play key roles in managing the physical burden of this condition. Counseling, working with support groups, and seeking support from networks of friends, family, and social media communities help take on the emotional impact of living with this progressive disease.

The good news, however, is that with proper management and coping strategies, most people with MG are able to lead full, productive lives.

Emotional

As with many other chronic conditions, there’s a significant emotional and psychological toll associated with myasthenia gravis. Studies have found this disease has a consistent impact on overall quality-of-life, as those with it suffer higher rates of depression, anxiety, and social withdrawal. It’s not easy living with a condition that can't be cured or reversed, and that many may not understand.

However, it’s important to remember two things: these issues are a normal, expected aspect of managing MG, and you can get help. Coping strategies include:

• Talking to your doctor about how you’re feeling and asking for recommendations about taking on any emotional challenges. They may have good resources for you and may be able to connect you to counseling services.
• Sessions with a therapist or mental health counselor may prove helpful to take on depression, anxiety, and other mental health problems that arise as you manage MG. Individualized sessions or group work can help make the task of taking this condition on more manageable.
• Medications for anxiety and sleep (such as alpha one blockers and benzodiazepines, among others) as well as depression (including SSRIs and tricyclic antidepressants) can also help. This type of therapy is carefully monitored due to the risk of side-effects or interactions with other drugs you may be taking, as there are many medications that can exacerbate MG. These include drugs like certain antibiotics, beta-blockers, muscle relaxants, lithium, and others—these should be avoided whenever possible.
• Incorporating healthy habits, such as improving diet, boosting exercise, and ensuring good sleep can help boost your mood and help manage anxiety, depression, and other disorders. Working with your doctor, a nutritionist, or other professionals can help set you on the right track.
• Managing stress may be particularly critical when taking on myasthenia gravis, as high levels can worsen both physical and psychological outcomes. Activities like meditation, yoga, or simply finding some downtime can help ease this burden.

Physical

Since MG is a neuromuscular disorder, it affects communication between the nerves and muscles. The primary goal of taking on the condition is to manage the associated fatigue and motor challenges, swallowing difficulties (clinically called “dysphagia”), and vision problems (double vision). Medications alone may not be sufficient to prevent disease progression, which is why other strategies are needed.

Since MG may wax and wane in severity, taking it on is often an evolving and dynamic process. This is why it’s essential to be open with your doctor about how you’re feeling; monitor your own progress and let them know when you’re not feeling well.  

Diet

Managing diet for myasthenia gravis may mean not only promoting good health and easing symptoms, but also managing the difficulty swallowing that sometimes accompanies the condition. Tips to keep in mind include:

• Emphasizing carbohydrates and proteins to raise energy levels and combat fatigue
• Making sure you’re eating more fresh vegetables, fruit, and whole grains
• Cutting back on sugars, salts, saturated fats, and cholesterol

If MG is making it difficult to swallow, you may need to work with your care team to come up with dietary adjustments you can make. A nutritionist may also be called in to help ensure any changes you make won’t stop you from getting enough vitamins and nutritions.  These changes might include:

• Avoiding large meals and instead opting for more frequent, smaller ones
• Preparing soft, easy to swallow foods
• Adjusting temperature and taste of meals to boost appetite
• Pureeing foods to make them easier to swallow
• Adopting a liquid diet, or relying more on liquid sources of nutrition (smoothies, shakes, etc.)
• Thickening liquids to prevent breathing them into the lungs

Lifestyle

In addition to adjusting diet and eating patterns, there are some other lifestyle changes you can make to help ease the symptoms. These can play a critical role in combatting the fatigue and motor challenges presented by myasthenia gravis:

• Exercise: Getting enough exercise can help build strength and raise energy levels. Given the physical effects of MG, it’s important to come up with a safe fitness plan in consultation with your doctor and/or physical therapist. Moderate and light intensity work are beneficial, but high intensity workouts may not be. Stop working out if symptoms worsen.
• Managing weight: Being obese or overweight can add to the burden of the condition and increase levels of fatigue and motor difficulty. Your doctor may advise you to consider ways of reducing weight; even small reductions can improve the outlook for MG.
• Stopping alcohol/tobacco use: There are many advantages to stopping drinking or smoking. For MG patients, doing so promotes weight loss, improves sleep, and helps prevent injury falls and accidents, among other health benefits.

Physical Therapy

Physical therapy (PT) for MG involves improving strength and muscle functioning. PT isn’t always necessary for milder cases, but it’s proven invaluable in more severe ones. Through guided work, in regular sessions, physical therapists emphasize:

• Developing balance
• Promoting motor coordination
• Strengthening  
• Breathing exercises

In addition to work in regular sessions, you also work to develop exercise and fitness routines to promote better health and ease symptoms. Not only that, if MG is causing severe difficulties walking or coordinating movements, using orthotics (or orthopedic devices), such as walkers, braces, or canes can also help.   

Other Methods

Generally speaking, the severity of MG symptoms fluctuate, with most feeling them less in the mornings and more in the evenings and at night. Managing this condition, then, means being aware of how you’re feeling, and adjusting your daily life to support your therapy.

As such, your doctor or specialist may advise:

• Time management: Plan your day so that you do more physically demanding tasks or exercise in the morning or whatever time of day you feel strongest and least tired. On very hot days, avoid going out in the middle of the day, as heat can worsen symptoms.
• Medication management: Most with myasthenia gravis will be taking several different types of medications. Create a system for you to remember to take these, such as keeping them displayed prominently or using a smartphone app to remind you. Let your doctor know any time you miss a dose, or if you’ve started taking other medications or supplements.
• Scheduling regular rest: Getting rest is a crucial way to help moderate the fatigue associated with MG. Plan for periodic naps throughout your day—and keep a regular sleeping pattern—to manage this symptom.
• Wearing eye patches: For those who experience MG affecting the eyes, double vision is a frequent symptom. Wearing an eye patch or special glasses can help if this becomes problematic. 

Social

Taking on a diagnosis of myasthenia gravis is a lot easier when you’re not alone. In fact, studies have shown that physical and psychological outcomes in chronic conditions improve when patients have a solid support system. Furthermore, there can be great value in finding and interacting with a community of others whose experiences are like yours.

Luckily, there are many avenues of social support for those with MG:

• Family and friends: Talk to your partner, children, or other members of your family about what you’re going through. Trusted friends can also be good sounding boards and offer empathetic ears. In more severe cases, loved ones and friends can also be a source of practical support.
• Support groups: Regular meetings with others with MG or those living with other chronic conditions can also be a great source of emotional support and information exchange. If you don’t know about any in your area (or happening virtually), ask your doctor or physical therapist. Some hospitals have special programs for chronic patients.
• Online communities: There are also a lot of online communities and social media groups for those with MG and caregivers. This can let you connect with folks all over the world who are taking on this condition.
• Advocacy groups: Another great source of information are nonprofit patient advocacy groups. The Myasthenia Gravis Foundation of America and the American Autoimmune Related Diseases Association, among others, work to promote research, raise awareness, and support those with MG.   

Practical

Living with chronic conditions like MG often requires considering accommodations that need to be made for transportation, at the workplace, and at home. You may also have to make arrangements regarding finances and care. What should you keep in mind? Here’s a breakdown:

• In the workplace, remember that many people may not understand what myasthenia gravis and autoimmune disorders are. Have a conversation with your employer or manager about how it may affect your day-to-day routine. In many cases, accommodations can be made for your condition. Remember: you cannot be discriminated against based on a health condition.
• Transportation is another important consideration. Attacks can affect your ability to drive, as can medications taken to manage MG. Only drive when it’s safe to do so and see if you can arrange transportation for errands or appointments.
• At home, it’s always good to see about preventing falls, especially if MG is affecting mobility. This may mean installing handrails in bathrooms and stairs, improving lighting, and clearing away trip hazards.
• Mobile technologies and apps have also proven instrumental in managing life with this condition. These can remind you about appointments, or when it’s time to take medications or fill prescriptions. Others can monitor and promote other aspects of health, such as nutrition, and exercise.
• Legal considerations are also critical. It’s a good idea to designate a health care proxy, someone you trust to make decisions for you if you’re unable.Legal documents, such as living wills and advanced directives, direct how you’d like your care to be, among other arrangements, for your family and doctor.