Some people with multiple sclerosis (MS) experience breathing problems. Also referred to as respiratory dysfunction or respiratory complications, this symptom of MS is especially common in people with advanced disease, but it can also occur early on or as the result of an infection.
If you have breathing problems with MS, you may take more frequent shallow breaths and struggle to take big, satisfying breaths. Your voice may also sound weaker or quieter, and you may have difficulty speaking for extended periods of time. You may also have a reduced lung capacity and find that your coughs are weaker and less productive. “My diaphragm seems to have lost the impetus to have a really good cough,” wrote one MyMSTeam member.
A pulmonologist (doctor specializing in respiratory management) can help you deal with these breathing problems by developing a respiratory care plan. This plan will depend on several factors, including the severity of your symptoms. The plan may involve several action items and treatments, including medication, respiratory therapy, or breathing support (ventilation).
Just as everyone’s MS symptoms and progression are different, so are the causes of different individuals’ breathing problems.
The most common cause of respiratory problems in MS is muscle weakness in the chest and abdomen. Respiratory muscle weakness is common in people with multiple sclerosis. Just as the muscles in the arms or legs can lose their strength and endurance, so can the muscles used to breathe. When the ventilatory (breathing) muscles become weak, inhaling and exhaling become more difficult and tiring.
Much less frequently, breathing problems in MS occur as the result of problems with the autonomic nervous system, which is responsible for controlling the majority of respiratory function. In people with MS, the immune system mistakenly attacks the protective coating (myelin sheath) surrounding nerve fibers in the brain and spinal cord. This process, known as demyelination, results in areas of damage called plaques or lesions. Demyelinating plaques on the areas of the brain associated with breathing can interfere with the function of the autonomic nervous system and lead to respiratory problems.
In severe cases, banding or girdling can also occur, during which a person feels tightness around their chest that makes breathing difficult. This symptom is commonly referred to as the “MS hug.”
People with long-standing MS may experience other respiratory complications — including aspiration (inhalation of food or liquid into the airways), lung infections, and respiratory failure — that could lead to breathing problems.
Certain medications used with MS, such as muscle relaxants, tranquilizers, and opioid pain relievers, can also depress (slow) breathing. Health care providers will carefully monitor the use of these medications in anyone with a history of swallowing problems or respiratory issues.
Some people with MS may also have other underlying conditions that cause respiratory problems. “I didn’t know that MS affects our breathing. I attributed my breathing problems solely to the fact that I have COPD [chronic obstructive pulmonary disease],” wrote a MyMSTeam member.
Breathing problems can do more than make inhaling and exhaling uncomfortable or difficult. They can affect your overall health and well-being.
Respiratory difficulties lower the levels of oxygen in the blood and brain, which can lead to cognitive problems, such as worsened memory and thinking.
Effective coughing plays an important role in keeping the airways clear of secretions and foreign particles. People with MS may have bulbar dysfunction, reduced cough strength due to the weakness of the muscles involved in expiration (breathing out). A weak cough increases the risk of chest infections caused by aspiration of food particles, fluids, or secretions.
Breathing problems can impair the process of voice production and speech, making it much more tiring and difficult to speak loudly or for extended periods of time.
Sleep problems are common in people with MS — affecting as many as 87 percent of people with the condition. Impaired breathing control and weakened upper respiratory muscles can lead to sleep-disordered breathing (called SDB), which can disrupt sleep. Poor sleep can, in turn, cause a person to be tired during the day.
If you experience any difficulty breathing, do not hesitate to contact your doctor or a neurologist. It is important to treat breathing problems early on, especially if you are at risk of developing respiratory complications. “If you’re having breathing difficulties, bring them up to your primary [care provider], then go from there,” advised one MyMSTeam member. “My medical team is in close contact with one another, so they work together to help me the best way they can.”
As this member noted, respiratory care may include a team of several health care professionals, including a pulmonologist (lung specialist), speech and language therapist, physiotherapist, and rehabilitation specialist.
According to the Multiple Sclerosis Trust, treating breathing problems in MS may help alleviate other MS symptoms, such as:
Health care professionals draw from an array of treatments to help manage the shortness of breath that can come with MS.
A doctor may prescribe medications to help open the airways and increase pulmonary function. These medications are taken via inhalation using an inhaler or nebulizer. “I develop asthma with MS — so scary. I now have Flovent [fluticasone propionate] and albuterol,” wrote one MyMSTeam member.
Oxygen therapy, also referred to as supplemental oxygen, involves administering additional oxygen from a tank to the body through a nose tube, mask, or tent. Oxygen therapy may take place at home or in a doctor’s office.
Pulmonary rehabilitation courses help build up the strength and efficiency of the chest muscles and prevent muscle weakening. The courses encourage exercise within a person’s own limits. A respiratory care team can also assess your breathing problems and recommend options for treatment or self-management, such as breathing exercises, while taking into account your needs and overall health.
A cough assist machine, also known as a cough machine, forces air into the lungs and removes air from the lungs at preset pressures. This process helps clear secretions from the lungs and increase lung capacity, producing a more effective cough.
In some cases, people with breathing problems may require additional breathing support, known as ventilation. Ventilators are machines that help you breathe or breathe for you. A continuous positive airway pressure (or CPAP) device is one form of noninvasive ventilation that may be used to help assist a person with MS in breathing throughout the night.
The symptoms of MS can be difficult to manage. It helps to have a team by your side. MyMSTeam is the online community for people with multiple sclerosis and their loved ones. Here, more than 164,000 members from across the globe come together to share advice, support, and stories of daily life with MS.
Have you had breathing problems with MS? How have you managed them? Let others know in the comments below or by posting on MyMSTeam.