Shortness of breath can be a sign of myasthenia gravis or a complication of the disease. Myasthenia gravis is an autoimmune disease that affects the neuromuscular junction (NMJ) — the place where nerves and muscles communicate. Myasthenia gravis results in muscle weakness that can affect muscles in different parts of the body. This can potentially include the respiratory muscles you need to breathe.

Members of MGTeam have discussed dealing with this symptom. “Sometimes I get short of breath unexpectedly,” shared one member. “But usually I’m tired, have a slight cold or virus, or have had an extra stressful day.”

These situations can all be triggers that worsen symptoms of myasthenia gravis. Shortness of breath can also be a sign of dangerous complications of myasthenia gravis, such as myasthenic crisis or cholinergic crisis.

In this article, we’ll look more closely at what causes shortness of breath in people living with myasthenia gravis — along with some tips to ease the symptom.

Myasthenic Crisis

A myasthenic crisis occurs when the respiratory muscles are not able to get enough air in and out of the lungs on their own. Between 10 percent and 20 percent of people living with generalized myasthenia gravis — the type that affects multiple muscle groups beyond the ocular (eye) muscles — will experience a myasthenic crisis at least once in their lifetime.

Myasthenic crisis is a life-threatening emergency that requires immediate medical treatment. From 66 percent to 90 percent of people in a myasthenic crisis will require intubation (having a tube is placed into the airway) and mechanical ventilation (being connected to a breathing machine) to help them get enough air. More than 20 percent need intubation when they’re first evaluated at an emergency room. Nearly 60 percent are intubated after being admitted into an intensive care unit (ICU).

A myasthenic crisis can be triggered by various factors, including:

• Menstrual cycle
• Pregnancy
• Sleep deprivation
• Surgery
• Pain
• Very hot or very cold temperatures
• Changing doses of certain medications
• Medications, including corticosteroids, and certain antibiotics
• Vaccination
• Emotional distress

No specific trigger is found in 30 percent to 40 percent of people who experience a myasthenic crisis.

Read more about 8 triggers that can worsen myasthenia gravis.

Cholinergic Crisis

A cholinergic crisis can seem similar to a myasthenic crisis since both can result in trouble breathing. A cholinergic crisis, however, can occur if a person takes too high a dose of medication for myasthenia gravis.

Treatment for a cholinergic crisis can include lowering the dose of medication, taking an antidote to neutralize the medication’s effects, or receiving mechanical ventilation support.

5 Ways To Ease Shortness of Breath With Myasthenia Gravis

Experiencing breathing difficulties can be uncomfortable or scary. Fortunately, there are steps you can take to reduce the symptom if you’re living with myasthenia gravis.

1. Stick to a Safe and Effective Medication Regimen

Work with your doctor to find the best medications to manage your myasthenia gravis symptoms, including shortness of breath. Your doctor may recommend medications like acetylcholinesterase (AChE) inhibitors such as pyridostigmine, corticosteroids such as prednisone, and other immunosuppressives.

While managing your myasthenia gravis, be cautious of certain medications that can trigger a myasthenic crisis. You may need to avoid certain drugs or work with your health care team to find safer alternatives. Make sure your doctors and pharmacist are aware that you have myasthenia gravis so they can help you avoid dangerous interactions when prescribing medications.

2. Manage Your Infection Risk

A 2020 study found that people with myasthenia gravis have a 39 percent higher risk for infections compared with those who don’t have the condition. Infections are the most common trigger of a myasthenic crisis. Taking steps to avoid contact with people who have a cold or flu can be an effective preventive measure to avoid catching a respiratory infection. Proper hand-washing and hygienic practices also help to fight the spread of germs.

Part of myasthenia gravis treatment typically consists of immunosuppressive drugs, which lower the ability of the body to fight infections. If recurrent infections become a problem, your doctor can help you manage your medications to best suit your needs.

Another side effect of AChE inhibitors is an increase in mucus production. The increased mucus production can increase the infection risk, which may lead to worsening breathing problems.

3. Improve Your Lung Function With Exercise

Research studies have shown that exercise can help with shortness of breath in people with myasthenia gravis. One exercise program included aerobic cycling, resistance training exercises such as squats and jumps, and stretching exercises. After participating in this exercise program, the people in the study showed improved lung function.

Another exercise program consisted of aerobic activity, resistance strength exercises, and balance and stretching exercises. After completing this program, participants showed improved strength and aerobic performance, and they reported an improvement in their myasthenia gravis symptoms.

While exercise is great for your body, people with myasthenia gravis should take extra precautions due to the nature of the disease. Muscles in people with myasthenia gravis fatigue more quickly with repeated use. Exercise is still recommended, but it’s essential to take more breaks throughout your exercise session.

4. Strengthen Your Breathing Muscles by Training Them

Just like general exercise, training the muscles responsible for breathing is also beneficial. People with myasthenia gravis often have decreased respiratory muscle strength and endurance. Improving the function of these muscles can significantly aid breathing in those with myasthenia gravis.

One studied exercise program was interval-based because of the fatigue associated with repetitive exercise in people with myasthenia gravis. It included using a respiratory trainer device with different pressure levels tailored to the individual. After 12 weeks of training, participants experienced improvements in lung function, endurance, and cardiovascular capacity.

Respiratory muscle training can help to improve the function of the lungs and the muscles associated with breathing.

5. Reduce Stress and Find Support

Stress can be a major trigger for a myasthenic crisis, and it can come in many forms, including physical, environmental, and emotional stress. “Stress is a huge trigger,” a member of MGTeam said. “I am learning my triggers and my limits. My daughters and I are putting together a tracking form for myself to find patterns of my symptoms.”

Another member talked about their crises being triggered by major life events such as the loss of their spouse and having to go back to work to keep their house.

Recognizing and managing stress before it becomes overwhelming is crucial. Taking rest breaks during tasks can help reduce physical stress, and completing larger tasks earlier in the day can help manage energy demands.

To help manage emotional stress, some find talking to a mental health therapist or counselor to be beneficial, while some prefer confiding in friends and family. Journaling can be another way to get stress out. Support from others with myasthenia gravis can be helpful as well, either from an in-person support group or an online community like MGTeam. It might take some time to discover what works best for you.

Keep Learning About Your Myasthenia Gravis

While not every trigger for myasthenia gravis symptoms is preventable, being aware of what might cause a breathing crisis and knowing how to respond are crucial steps in managing shortness of breath. Work closely with your health care provider to address any questions or concerns you may have about shortness of breath and myasthenia gravis.

Talk With Others Who Understand

MGTeam is the social network for people with myasthenia gravis and their loved ones. On MGTeam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Are you living with myasthenia gravis and experiencing shortness of breath? Have you had a myasthenic or cholinergic crisis? Share your experience in the comments below, or start a conversation by posting on your Activities page.