For many people with muscular dystrophy (MD), early symptoms can be easy to dismiss as aging, overwork, or another health problem. But muscular dystrophy is a group of genetic conditions that cause progressive muscle weakness and degeneration.

The symptoms and age when they begin can vary depending on the type of MD. Some forms begin in infancy or childhood, while others first appear in adulthood.

One myMDteam member shared, “I was diagnosed a year ago. But I’ve had symptoms for a decade. So I was very angry initially because, for years, my symptoms and pain were dismissed by various healthcare professionals.”

We reviewed dozens of comments from members of myMDteam in conversations like this one to learn more about early signs and symptoms that led people to seek a diagnosis. These experiences aren’t a checklist for diagnosing MD. Similar symptoms can have many causes.

Still, symptom changes that persist, worsen, or interfere with daily life are worth discussing with a healthcare professional.

🗳️ At what age did you or your loved one start showing signs of muscular dystrophy?

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Age 30 or older

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Here are six early symptoms myMDteam members said they noticed before diagnosis.

Several members said balance problems and falls were among the first signs that something was wrong. Some described becoming unsteady gradually, while others noticed falls that seemed to happen without warning.

One member shared, “I constantly kept falling out of nowhere. I was very active before the symptoms started.”

“I was born weak. I was a floppy baby. They thought I had polio.”

— A myMDteam member

Another member noticed increasing problems with walking and balance over time: “I was noticing more and more problems with balance and walking distances. I thought it was related to a previous diagnosis but it didn’t quite fit.”

Frequent falls, clumsiness, and difficulty walking can occur when muscle weakness affects the legs, hips, or other muscles involved in movement. Depending on the type of MD, people may also have trouble climbing stairs, standing up, walking long distances, or keeping their balance on uneven ground.

Falls and balance problems can have many causes. If they’re becoming more frequent or affecting your daily activities, consider talking with a healthcare professional.

Pain isn’t a defining symptom for every type of MD. But in some forms, including myotonic dystrophy (DM), muscle pain, cramping, stiffness, and fatigue can occur.

One member shared a long journey of trying to figure out the cause of lower back pain and weakness: “I went for years not knowing. … I had lower back pain and couldn’t climb stairs, thought I had slipped disks and it was pinching a nerve in my 30s. … Started to see a chiropractor, that helped the lower back pain, but it didn’t help issues I was having with climbing stairs. Then I got into my 40s, then started having problems getting up from being seated on the floor.”

“I went for years not knowing. … I had lower back pain and couldn’t climb stairs, thought I had slipped disks and it was pinching a nerve.”

— A myMDteam member

For some members, pain initially pointed them toward a back, joint, or nerve problem instead. Keeping track of when pain occurs — and what activities make it better or worse — may help you explain the pattern to your healthcare professional.

For some people with MD, reduced stamina or fatigue may be an early concern. In myotonic dystrophy, for example, fatigue and muscle pain can occur.

“After a day’s work, I was totally burnt out. I went to a different doctor who finally believed me that something was going on. And didn’t tell me that I was probably lazy.”

— A myMDteam member

One member described struggling to keep up physically at work: “It was my job, I was having trouble doing the work. After a day’s work, I was totally burnt out. I went to a different doctor who finally believed me that something was going on. And didn’t tell me that I was probably lazy.”

When everyday activities take more effort, people may notice that familiar routines leave them unusually tired. Fatigue can be frustrating because it isn’t always visible to other people.

Some forms of MD can affect muscles used for speaking and swallowing. In myotonic dystrophy, swallowing problems may occur. Slurred speech is another possible symptom.

“I got accused of being drunk a couple times because the DM caused slurred speech.”

— A myMDteam member

One member living with myotonic dystrophy shared that they developed swallowing problems, and later slurred speech, which affected their livelihood as an Uber driver: “I got accused of being drunk a couple times because the DM caused slurred speech.”

Depending on the type of MD, weakness in the throat, mouth, face, or tongue may affect speech or swallowing. Talk with a healthcare professional about new or worsening swallowing problems or speech changes.

Some members first noticed weakness in their shoulders and upper arms. Everyday movements, such as lifting objects or reaching overhead, became unexpectedly difficult.

One member shared, “I noticed my arms didn’t raise all the way up. I visited a physical therapist and he sent me to a muscular dystrophy doctor.”

In facioscapulohumeral muscular dystrophy, shoulder and upper-arm weakness can make it hard to lift the arms overhead. Other types of MD may affect the hips, thighs, or legs first.

“I noticed my arms didn’t raise all the way up. I visited a physical therapist and he sent me to a muscular dystrophy doctor.”

— A myMDteam member

People may notice difficulty brushing their hair, reaching shelves, carrying groceries, or getting dressed. Because these changes can happen gradually, some people adapt without realizing how much their strength has changed.

While some people develop symptoms later in life, others recall signs beginning in infancy or childhood. Congenital muscular dystrophy is present at birth or becomes noticeable before age 2. Signs can include low muscle tone, weakness, and delayed motor milestones.

One member shared, “I was born weak. I was a floppy baby. They thought I had polio.”

Early muscle weakness can look different from one person to another. In children, caregivers may notice low muscle tone, delayed sitting or walking, or difficulty keeping up physically with peers. If a child isn’t meeting expected motor milestones, a healthcare professional can help determine what evaluations may be appropriate.

What Should You Do if You Notice These Symptoms?

Muscular dystrophy symptoms vary widely. The pattern of weakness, age of onset, and other symptoms can depend on the type of MD. If you’re noticing progressive weakness, frequent falls, trouble with everyday movements, or new speech or swallowing problems, talk with a healthcare professional.

They may use a medical history and physical exam, along with blood tests, genetic testing, or other evaluations, to look for MD and rule out other causes.

Getting answers can take time, but a diagnosis may help explain symptoms and guide next steps. Connecting with specialists and other people living with MD can also help you feel more supported and less alone.