How to reduce SMA fatigue

Last updated Nov. 20, 2024, by Susie Strachan
Fact-checked by Ana de Barros, PhD

Spinal muscular atrophy (SMA) is a neuromuscular disorder that causes progressive muscle weakness, which can lead to fatigue.

Fatigue is an extreme tiredness or exhaustion that doesn’t go away with rest. It can make it challenging to do everyday activities, even if you’ve had enough sleep.

SMA fatigue can have a profound effect on your daily life, leaving you feeling worn out physically and mentally.

However, there are strategies that can help you manage SMA fatigue.

Fatigue in SMA

Many people living with SMA report having deep-seated fatigue, which can affect all aspects of life.

One type of fatigue is muscle tiredness, which occurs when muscles become quickly exhausted from activity. Eating or even breathing may even become difficult as SMA weakens the muscles.

You also may experience an overwhelming tiredness that drains your mental energy, even when you are not physically active. This is called perceived fatigue, and it can affect your concentration, memory, and focus.

Perceived fatigue can lead to cognitive fatigue, which is a type of mental strain that comes from doing tasks that require problem-solving, planning, or decision-making. It can affect school or work, as you may find it difficult to pay attention and complete assignments.

What causes fatigue in SMA?

The exact causes of fatigue in SMA are not completely understood.

Muscle fatigue may be linked to problems with muscles receiving the right signals from your nerves, making the muscles work harder to do simple tasks, and causing you to become exhausted more quickly.

There is some evidence that SMA fatigue might involve a phenomenon called conduction blocks — a disruption or interruption in the normal flow of electrical signals along a nerve fiber. Because muscles rely on motor neurons to send electric signals that control movement, a block in these signals can lead to muscle fatigue.

Muscle fatigue also can be intensified by daytime tiredness due to shallow breathing, or hypoventilation, during sleep.

The impact of fatigue on daily life

The combination of physical and mental exhaustion can lead to motivational fatigue, affecting your ability to start or complete tasks.

It can interfere with your daily routines, such as school, work, social activities, and hobbies. Even everyday activities like walking, eating, and getting dressed can become exhausting.

Weakened muscles tire more quickly, which also may make it harder to maintain your independence as you become more reliant on your caregivers.

You may have trouble sticking with your treatment plans, such as occupational therapy, as the physical and mental effort required for such sessions can feel overwhelming.

Strategies to reduce SMA fatigue

There are many strategies you can try to help with fatigue from SMA, including lifestyle changes and therapeutic treatment that help conserve your energy.

While you may not be able to control feeling fatigued, focusing on small, doable changes can make everyday tasks less overwhelming. For example, you can take care of priority tasks when your energy levels are higher, and wait to do less essential tasks at another time.

You may also want to try to plan ahead for certain events, which can involve scheduling rest periods or adjusting activities, to help conserve your energy for what is most important to you.

Exercise

Regular, controlled movement can help you maintain flexibility and prevent contractures, or permanent stiffening of muscles and joints.

A physical therapist can work with you to create an exercise program that suits your mobility, with components such as stretching, aerobics, and resistance training.

Stretching supports mobility and range of motion, while aerobic exercise can improve cardiovascular health and lung function. Both are important for energy management with SMA. Better lung capacity can improve efficiency in breathing, helping to alleviate fatigue.

Resistance training can maintain or build muscle strength, which helps reduce the energy required for movement. Maintaining muscle strength can also improve your posture and reduce the discomfort that can contribute to fatigue.

Keep in mind that it’s important to not over-exercise. Overworking your muscles can contribute to greater fatigue by increasing weakness and atrophy of muscles. It can also worsen SMA symptoms.

Sleep

Muscle weakness, respiratory issues, and difficulty finding comfortable sleeping positions can disrupt your sleep, making it difficult for you to get good rest.

Respiratory issues are common in people with SMA, as weakened muscles make it harder to breathe deeply, especially during sleep. This can lead to hypoventilation at night, reducing oxygen levels and worsening daytime fatigue.

If untreated, sleep-related breathing problems can lead to a cycle of ongoing tiredness, which can affect your physical and mental energy throughout the day.

If you are having trouble sleeping, talk with your primary healthcare provider.

Depending on the severity of your issues, you may be referred to a sleep specialist. This specialist might suggest ways to find more comfortable sleep positions, or recommend the use of respiratory support devices, such as a BiPAP, a noninvasive device that helps people breathe easier, to help maintain better oxygen levels while sleeping.

Diet

Depending on the type of SMA, you may have weakened throat and jaw muscles, occurring from the onset of the disease, or developing as SMA progresses. Such weakness can make it difficult to properly chew and swallow food.

SMA fatigue may also make it feel like too much work to finish meals, as chewing and swallowing require physical effort. You may not get enough calories or vital nutrients, which may worsen fatigue over time.

A nutritionist can suggest ways to prepare foods that are easier to chew and swallow. These specialists can also suggest changes to your diet to ensure that your food choices are both nutritious and not hard to eat.

An occupational therapist can recommend adaptive tools, such as specialized utensils, plates, or cup holders, to make eating easier and more efficient. These tools can help conserve energy by reducing the physical effort required during meals.

Other lifestyle changes

Additional changes to consider include:

• breaking tasks into smaller, manageable steps
• taking rest breaks between activities
• asking for help and delegating tasks
• making adjustments to your work or school environment, such as getting ergonomic furniture, working remotely, and having a flexible schedule
• using technology such as voice-activated controls
• practicing mindfulness, meditation, or breathing exercises to feel more relaxed.

Medical interventions

While there is no cure for SMA, disease-modifying therapies (DMTs) have the potential to slow down or stop its progression.

These treatments target the underlying causes of SMA by improving motor neuron function and muscle strength. DMTs also help reduce complications, such as breathing difficulties, which can affect SMA-related fatigue as well as life expectancy.

Orthotic devices such as spinal braces or supports to improve posture can reduce strain on your weakened muscles, including from scoliosis, or a curvature of the spine, which can develop as your muscles struggle to support your spine properly, and lead to further fatigue and discomfort.

Respiratory support

Fatigue can weaken the muscles involved in breathing, making it harder for you to take deep breaths or maintain adequate airflow.

Severe scoliosis can also affect lung function, leading to increased breathing difficulties and greater fatigue.

When the muscles responsible for breathing become exhausted, it can cause shallow breathing or hypoventilation, especially during physical activity or while at rest.

Poor breathing can further contribute to fatigue, and may eventually require respiratory therapy or, in more severe cases, using a ventilator.

Speech

Fatigue can also affect your speech and your ability to communicate, as the muscles used for speaking tire more quickly.

A speech therapist can provide strategies and exercises to strengthen the muscles used for speech. A therapist can also recommend alternative communication methods, such as augmentative communication or AAC devices. These devices can range from low-tech options, like picture or letter boards, to high-tech solutions, such as speech-generating devices or communication apps on a tablet.

Support and resources

For practical support suggestions for managing SMA, start with your care team.

Depending on your needs and SMA type, your care team can help you or your child manage symptoms such as SMA-related fatigue.

When you have SMA, mental health can be affected, especially if you are also dealing with fatigue. You may want to consider speaking with your doctor about seeing a counselor or therapist for emotional support.

The forum topics at SMA News Today include discussions about living with the disease, such as coping with fatigue, as well as podcasts and videos.

Several organizations host both online and in-person support groups:

• Cure SMA provides family support, and hosts events like the annual SMA Conference, which includes networking and peer support opportunities. The nonprofit also operates specialty care centers across the U.S.
• The Muscular Dystrophy Association offers support groups, and provides guidance on living with SMA through its MDA Care Centers.
• Cure SMA Canada offers family support programs, including online support groups and in-person events.
• Muscular Dystrophy Canada offers peer support programs.
• SMA Europe, an umbrella organization, promotes research, advocacy, and awareness throughout Europe.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.