Fatigue is a common experience for people with spinal muscular atrophy (SMA), an inherited neuromuscular disorder that causes muscle weakness and degeneration. Fatigue can be both perceived and physiological — in the mind and in the body. Understanding the differences between perceived fatigue and muscular fatigue can help you best care for yourself.

Types of Fatigue Experienced by People With SMA

People with spinal muscular atrophy may feel perceived (subjective) fatigue, also known as “experienced fatigue.” They may also have muscular (objective) fatigue, also called “performance fatigue.” While people with SMA often report experiencing both, the two forms of fatigue are not always related and seem to stem from different causes, according to a study at Columbia University Medical Center reported in the Journal of Neuromuscular Diseases.

Perceived Fatigue

Perceived fatigue refers to an overwhelming sense of tiredness and exhaustion. According to the Columbia University study, this exhaustion includes an increasing sense of effort and a lack of energy and motivation.

Some people diagnosed with SMA may feel like they are exhausted or that they don’t have the energy to perform tasks required for daily living. They may feel worn out, even if they are getting enough sleep, eating well, and not overexerting themselves.

The study noted that perceived fatigue is a common clinical phenomenon in SMA. All 32 participants in the study reported experiencing perceived fatigue.

While perceived fatigue can impact a person’s physical abilities and endurance, it is not linked to physical, muscle fatigue. People diagnosed with SMA can feel perceived fatigue regardless of their physical functioning and activity levels.

Muscle Fatigue

Muscle fatigue, also called fatigability, refers to a measurable decline in muscle and motor function over time.

A person diagnosed with spinal muscular atrophy experiencing muscle fatigue may begin a short walk and feel fine, but then feel muscle weakness or a loss of motor function after a few minutes of activity. If they continue walking, they may experience muscle failure that results in stumbling or falling and need assistance to return to their starting point.

Unlike perceived fatigue, which is evaluated through subjective self-reporting, muscle fatigue is measurable and visible — which is why it is referred to as objective. Health care professionals use several tools, including the fatigue severity scale, to assess fatigability among people with SMA. Symptoms of fatigability are also visible, in that a person may be observed losing muscle strength as they walk, move, and perform daily tasks.

Fatigability is present in all types of spinal muscular atrophy, and people with SMA experience muscle fatigue throughout the course of their lives.

Managing Perceived Fatigue

There are a few ways to manage the perceived fatigue and feelings of tiredness associated with spinal muscular atrophy.

Pain Management

If pain is keeping you from sleeping at night or contributing to the exhaustion associated with perceived fatigue, managing it could help you feel better. Some common approaches include mindfulness meditation, medication, and cognitive behavioral therapy. Ask your doctor or physical therapist about these and other techniques to help you feel more comfortable.

Daily Modifications

Perceived fatigue can impact a person’s ability to participate in daily activities. According to Cure SMA, it’s recommended that people with SMA modify their daily schedule or activities to minimize the impact of fatigue on their lives. Take breaks and rest when needed to prevent worsening fatigue or potential injury. Cure SMA also advises people with SMA to understand the signs of perceived fatigue and report them to their doctors or caregivers.

Managing Muscle Fatigue

There are several strategies for managing muscle fatigue caused by SMA, as well.

Medication

Research is ongoing to find medications that help reduce fatigability in people with spinal muscular atrophy. One medication, Spinraza (nusinersen), has been found to reduce fatigue in adults and children diagnosed with SMA. In particular, clinical trials have demonstrated that nusinersen can be effective for adults with spinal muscular atrophy types 2 and 3, as well as children with types 2 and 3.

If you have SMA, talk to your doctor about medications or clinical trials for treatments that could help reduce your fatigability.

Physical Therapy

Physical therapy programs for people with SMA often include stretching exercises and movement to improve cardiovascular fitness and stamina. Working with a physical therapist specializing in neuromuscular disorders can help you manage fatigue.

Pacing Yourself

As you become familiar with the ways you experience fatigability, you’ll develop an awareness of how much physical activity you can do before you start to experience significant muscle fatigue. Working with a physical therapist and monitoring how you feel to keep your activity within these parameters can help reduce muscle fatigue.

Help for Both Perceived Fatigue and Muscle Fatigue

People with all types of SMA experience both perceived and muscle fatigue. Luckily, there are some practices that improve both types of fatigue.

Exercise

Regular exercise appears to reduce both fatigability and perceived fatigue in people with spinal muscular atrophy. Physical activity, tailored to your abilities and needs, may increase motor function and slow the progressive muscle weakness associated with SMA.

Deciding whether to exercise with spinal muscular atrophy — and how to do so — can be confusing. In the past, many physicians have cautioned people with neuromuscular disorders against physical activity for fear of damaging their muscles. Today, there is evidence that exercise may benefit people with SMA and other neuromuscular diseases. However, more research is needed to understand the benefits and long-term impact of exercise on SMA, especially among adults.

Sleep Management

Make sure you get enough rest every night. When it comes to muscle fatigue, adequate sleep gives your muscles as much time to rejuvenate as possible.

Rest can also benefit perceived fatigue. When you sleep, your brain performs several tasks that must happen for you to feel rested and alert the next day.

It’s important that you are lying in a comfortable position when you’re trying to sleep, so tired muscles and joints can fully relax. You may want to support certain areas of the body with extra pillows or rolled towels to stay comfortable and get as much benefit from your sleep as possible.

It Takes a Community

If you or someone you love has been diagnosed with spinal muscular atrophy and is dealing with perceived fatigue, muscle fatigue, or both, reach out on mySMAteam. Ask a question, start a conversation, or share your story to connect with other people just like you.

Have you experienced SMA fatigue? Has anything helped you to feel more energized and alert? Comment below or start a conversation on mySMAteam today.