Although people face a range of physical and emotional challenges when living with muscular dystrophy (MD), one of the most common is fatigue — a deep exhaustion that rest cannot relieve. Around 7 in 10 people with a muscle-wasting condition say that fatigue causes the most daily problems among MD’s long list of symptoms.
MD is an umbrella term for a group of nearly 30 genetically inherited diseases, all characterized by progressive muscle weakness and degeneration in different parts of the body. By causing muscle wasting, MD directly affects how much energy a person has for relatively simple actions.
This article explains what fatigue is, why MD causes it, and how to manage and prevent those draining moments throughout the day.
What is MD fatigue?
MD fatigue is the persistent mental or physical exhaustion that can stem from living with muscle weakness, as well as from the condition’s knock-on effects, such as pain, difficulty sleeping, breathing problems, medication side effects, or emotional strain.
Fatigue is more than simply feeling tired. It refers to a deep exhaustion and weakness that do not seem to improve with rest. Fatigue may mean:
- everyday tasks, such as getting dressed, take longer
- bathing or showering is tiring
- concentrating becomes more difficult as the day progresses
- more recovery time is needed after appointments
In people with MD, fatigue can come on suddenly and unexpectedly. This unpredictability can often create a major barrier to making plans and mapping out a schedule.
Fatigue, muscle weakness, and sleepiness
Several symptoms of MD are related to fatigue, but understanding the differences between them can help patients discuss them with their multidisciplinary care team and address the root cause of their exhaustion. These include:
- Muscle weakness: This is a reduction in maximum muscle strength. Muscle weakness can make physical movements, such as climbing stairs or picking up objects, difficult and increasingly tiring throughout the day.
- Tiredness and sleepiness: In those with MD, daytime sleepiness can refer to the tendency to fall asleep during the day. This tendency can stem from muscular dystrophy-linked breathing problems at night or poor sleep quality.
- Chronic fatigue: This is a persistent exhaustion that does not get better with rest, stronger muscles, or better sleep. It has many potential causes in those with MD.
Fatigue can also adversely affect posture, concentration, confidence, and mental health.
What causes fatigue in MD?
Several factors can contribute to fatigue in people with MD:
- Muscle weakness and physical effort: Weakened muscles cannot generate sufficient force to perform an activity.
- Breathing problems: Respiratory insufficiency is a common feature of MD. This issue can cause low oxygen and high carbon dioxide levels, leading to fatigue.
- Sleep problems: Many people with MD, especially those with Duchenne and Becker muscular dystrophies, experience sleep disturbances (apnea) and depression that can affect energy levels during the day and cause fatigue.
- Heart problems: These are common in certain types of MD and can be a cause of fatigue.
- Pain, mood, medication, and other health conditions: Coping with pain can be physically and emotionally demanding, potentially leading to fatigue. People with MD may also need to take a range of medications. Some of these, such as steroids or muscle relaxants, can cause side effects, including fatigue and drowsiness. Additionally, MD can increase the risk of some mental health conditions, like depression, which frequently causes fatigue.
Because fatigue can stem from multiple overlapping reasons, managing MD-related fatigue presents a unique challenge.
How is fatigue evaluated?
Evaluating fatigue combines subjective ratings of how much tiredness a patient feels with screening for possible underlying causes.
A care team might ask patients to rate how they feel while concentrating or performing certain physical activities, as well as to evaluate the effects of fatigue on their quality of life.
Doctors will differentiate between muscle weakness and fatigue due to day-long use of the muscles, known as motor fatigability, or the rate at which force declines during repeated or sustained muscle contractions.
The care team may run sleep studies to check for nighttime breathing issues. They may also test for heart issues, such as cardiomyopathy or an irregular heartbeat, by performing echocardiograms and electrocardiograms.
A doctor may review a patient’s medication regimen for drugs that may be causing fatigue as a side effect. Blood tests can help to identify hormonal or metabolic conditions that might be contributing to fatigue, such as an underactive thyroid gland.
How to manage fatigue with MD
Several fatigue management strategies can help to increase energy reserves and quality of life with MD.
Pacing and energy conservation
Taking steps to pace energy use throughout the day can help reduce the impact of fatigue. Measures for energy conservation with MD might include:
- setting small, manageable goals
- balancing physically demanding tasks with less taxing ones
- timing the most demanding tasks to coincide with peak energy windows during the day
- taking regular breaks
- promoting sleep by maintaining a regular sleep schedule, avoiding heavy meals before bedtime, and keeping the bedroom cool and dark
- rearranging the home to keep unnecessary movement to a minimum and ensuring essential items are easily reachable
- storing commonly used cookware and utensils at waist level, directly on countertops, or on racks to avoid repetitive bending and reaching
- grouping items by destination when tidying up to minimize trips between rooms
- using a rolling utility cart to move heavier loads, such as groceries, wet laundry, or dishes, from place to place
- using to-do lists, alarms, and calendars to reduce cognitive load
- using drive-through windows, curbside pickup, or online ordering for errands including banking, prescriptions, and shopping
- consolidating outings by visiting single-stop shopping centers rather than getting in and out of a vehicle at multiple locations
- checking outdoor venues in advance for terrain, parking, and facility accessibility, so unexpected physical barriers do not drain stamina
Exercise and physical therapy
Regular exercise can help with fatigue. Aerobic exercise can increase blood flow, whereas muscle-building exercises, such as weightlifting or other resistance training, may help increase muscle strength, energy levels, mood, and sleep quality.
As certain types of exercise may actually damage muscle and worsen weakness, it is important to consult with your care team and physical therapist to determine the right kind of exercises for MD.
Sleep and daily routines
An occupational therapist can teach energy conservation techniques to ensure body movements are more efficient, which may reduce fatigue.
Nutrition and hydration are also important for maintaining energy levels. Keeping a large flask or water bottle nearby with a straw makes it easy to take frequent sips.
Resting proactively or taking short naps during the day can help to reduce fatigue, especially for those with sleep disturbances or sleep apnea.
A healthcare provider can prescribe medications to treat anxiety or depression, helping patients manage mental-health-related fatigue.
Mobility aids and adaptive equipment
Assistive devices or mobility aids, such as a cane, walker, scooter, or wheelchair, can help reduce fatigue. Other devices that can support daily tasks include:
- electric jar or can openers
- long-handled reachers to pick up items from the floor without straining
- shower benches, sturdy grab rails, and handheld showerheads to conserve stamina during personal grooming
When should fatigue be discussed with a doctor?
Patients should speak to their doctor about any fatigue, especially if it is new, getting worse, or comes with other symptoms, such as:
- morning headaches
- difficulty concentrating
- excessive daytime sleepiness
- heart palpitations
Healthcare providers may need to investigate further due to possible links with more serious health problems, such as those involving the lungs or heart.
A doctor can also refer a patient to a specific member of their care team. For example, if light exercise seems to trigger extreme fatigue, a physical therapist may recommend alternatives to stay active. Or, if other symptoms suggest a nighttime breathing or heart issue, the doctor may refer the patient to a pulmonologist or cardiologist.
Patients should seek immediate medical attention if, along with fatigue, they experience any:
- chest pain
- abdominal pain
- shortness of breath
Bone fractures accompanied by confusion, breathlessness, or other abnormal symptoms are also a medical emergency for those living with MD due to the risk of a rare but life-threatening condition called fat embolism syndrome.
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