Cardiomyopathy

Overview

Cardiomyopathy is a disease of the heart muscle. The muscle becomes thickened, stretched, or stiff, so the heart cannot pump blood as well as it should. This can lead to symptoms like breathlessness, tiredness, and swelling, and may cause problems over time. The word comes from 'cardio' (heart), 'myo' (muscle), and 'pathy' (disease).

Cardiomyopathy is not very common, but it is not extremely rare either. It affects around 1 in 500 to 1 in 2,500 people, depending on the type. Some forms are found more often in certain families or age groups.

Cardiomyopathy can affect people of all ages, including children and older adults. Some types are more common in men, while others are more common in women. It can occur in people who are otherwise healthy, especially if it runs in the family. It may also develop as a result of other health conditions such as high blood pressure or heart attack.

Symptoms

Common symptoms

• Breathlessness, especially during activity or when lying down
• Feeling unusually tired or weak
• Swelling in the ankles, feet, legs, or belly
• Heart palpitations (feeling like your heart is racing, fluttering, or skipping beats)
• Chest pain or discomfort, often with activity
• Dizziness or lightheadedness
• Fainting (syncope), sometimes without warning

Symptoms in children

• Poor feeding or difficulty feeding
• Slow weight gain or failure to thrive
• Rapid or very fast breathing
• Being extra sleepy or less active than expected
• Swelling of the face, legs, or belly
• Frequent respiratory infections or wheezing

Symptoms in older adults

• Shortness of breath with everyday tasks, like dressing or walking short distances
• Confusion or feeling unusually forgetful, due to poor blood flow to the brain
• Falls or balance problems because of dizziness or fainting
• Increased fatigue and reduced ability to do usual activities
• Swelling in the legs or belly that may be mistaken for normal aging

Causes

Main causes

• Genetic mutations (changes in your DNA) that you inherit from your parents — this is common in some types of cardiomyopathy
• High blood pressure that weakens or thickens the heart muscle over time
• A heart attack that damages part of the heart muscle
• Infections that affect the heart, especially viral infections
• Long-term heavy alcohol use or use of certain recreational drugs (like cocaine)
• Some chemotherapy medicines that can damage the heart muscle (ask your doctor about your specific treatment)
• Other medical conditions, such as thyroid disease, diabetes, or conditions that cause too much iron in the body

Risk factors

• Having a family member (parent, sibling, or child) with cardiomyopathy or sudden cardiac death
• A personal or family history of heart disease, heart failure, or heart rhythm problems
• Long-standing high blood pressure
• Obesity or being overweight
• Diabetes
• Heavy alcohol consumption
• A history of heart attacks or other heart damage
• Age — some types of cardiomyopathy are more common in older adults, but it can occur at any age

When to see a doctor

See a doctor urgently if:

• If you have any of the emergency symptoms listed above, call your local emergency number right away.
• If you have new or worsening chest pain, fainting, or severe breathlessness, get urgent medical help.
• If you have a family history of cardiomyopathy or sudden cardiac death, talk to your doctor even if you feel fine — you may need screening.

Book a routine appointment if:

• If you experience mild but persistent symptoms like tiredness, swelling, palpitations, or dizziness, make a non-urgent appointment with your doctor.
• If you have a health condition that increases your risk, such as high blood pressure or diabetes, ask how often you should be checked.
• If you are planning to start a family and are concerned about inherited conditions, speak to your healthcare team.

Diagnosis

To diagnose cardiomyopathy, your doctor will ask about your symptoms, medical history, and any family history of heart disease. They will listen to your heart and lungs, check your pulse, and look for signs like swelling or fluid build-up. If they suspect cardiomyopathy, you will usually be referred to a heart specialist (cardiologist) for tests.

Tests that may be done

• Electrocardiogram (ECG) — a quick test that records your heart's electrical activity
• Echocardiogram — an ultrasound that shows the size, shape, and pumping function of your heart
• Blood tests — to check for signs of heart strain, infection, or other conditions
• Cardiac MRI — a detailed scan that gives clear pictures of the heart muscle
• Chest X-ray — to look at the size and shape of your heart and check for fluid in the lungs
• Exercise stress test — to see how your heart responds to activity
• Genetic testing — if a family cause is suspected, you may be offered this after counselling

What to expect at your appointment

You will likely start with simple, painless tests like an ECG and a blood test. An echocardiogram is also common and is completely painless. Some tests, like a cardiac MRI, involve lying still inside a machine. If the diagnosis is confirmed, your doctor will talk through what it means, how to manage it, and whether close family members should be checked. You may need regular follow-up appointments to monitor your heart.

Treatment

Treatment for cardiomyopathy depends on the type, how severe it is, and what is causing it. The main goals are to ease symptoms, prevent complications, and slow down any damage to the heart muscle. Your treatment plan will be personal to you and may include medicines, healthy lifestyle changes, and sometimes devices or procedures. It is important to take any prescribed treatment exactly as your healthcare team advises.

Self-care at home

• Follow your doctor's advice about physical activity and how much you can safely do.
• Limit alcohol and avoid recreational drugs, as they can worsen heart muscle damage.
• Keep a healthy weight and eat a heart-healthy diet.
• Quit smoking if you smoke. Ask your healthcare team for support.
• Manage stress and get enough rest.
• Keep all medical appointments and let your doctor know if symptoms change.
• Talk to your doctor before taking any over-the-counter medicines, including pain relievers or herbal remedies, as some can affect your heart.

Medical treatments

Several types of medicines may be used to help your heart pump better, relax blood vessels, reduce blood pressure, remove extra fluid, or control heart rhythm. Some drugs help prevent blood clots. Your doctor will choose the right treatment for you and explain how to take it. Never stop or change a medication without talking to your healthcare provider. In some cases, a small device called a pacemaker or implantable defibrillator may be fitted to help control the heart rhythm or protect against dangerous irregular heartbeats.

When is surgery considered?

Surgery may be considered if medicines are not enough or if the condition is severe. Options include implanting a device to help the heart pump (a ventricular assist device), removing part of the thickened heart muscle (septal myectomy), or a heart transplant for very advanced disease. Not everyone needs surgery, and your specialist team will discuss the options and risks in detail with you.

Living with this condition

Living with cardiomyopathy means learning about your heart and how to look after it. You may need to pace yourself during daily activities and take rest breaks when you need them. It is helpful to notice and track your symptoms, like how far you can walk or if you feel more tired than usual. Bring a list of your medications and any questions to each doctor's visit. You can still enjoy many of the things you love, but you may need to adapt how you do them.

Lifestyle tips

• Aim for a balanced diet rich in vegetables, fruits, whole grains, and lean protein.
• Reduce salt to help manage fluid and blood pressure.
• Limit alcohol, as it can weaken the heart muscle further.
• Do not smoke and avoid second-hand smoke.
• Stay active at a level that feels safe — your doctor can guide you.
• Weigh yourself regularly, as sudden weight gain can be a sign of fluid build-up.

Diet and exercise

Your healthcare team can help you create a safe diet and exercise plan. In general, a heart-healthy diet means more plant foods and less processed or high-salt food. Exercise is often encouraged, but the type and intensity should be based on your individual condition. Some people may need to avoid heavy weightlifting or intense competitive sports. Walking, gentle cycling, or swimming are often good choices — but always check with your doctor first.

Mental health and emotional wellbeing

Living with a chronic heart condition can sometimes lead to anxiety, worry, or sadness. It is normal to feel overwhelmed at times. Talking to your doctor about your feelings is important, and they can suggest counselling, support groups, or other resources. Remember, your mental and emotional health is just as important as your physical health.

Prevention

In many cases, cardiomyopathy cannot be fully prevented, especially if it is inherited. However, you can reduce your risk of developing heart damage by managing high blood pressure, controlling diabetes, eating a healthy diet, staying active, avoiding harmful substances, and not smoking. If you have a family history, talk to your doctor about screening and genetic counselling.

Vaccines

Staying up to date with recommended vaccinations, such as flu and COVID-19 vaccines, is a good idea because infections can make heart conditions worse. Ask your doctor or pharmacist which vaccines are right for you.

Screening programmes

If you have a close family member with cardiomyopathy, your doctor may suggest regular heart tests, such as an ECG or echocardiogram, even if you have no symptoms. Genetic testing may also be offered in some situations. Early detection can help you manage the condition better.

Complications

If left untreated

• Heart failure — when the heart becomes too weak to pump enough blood for the body's needs
• Serious heart rhythm problems (arrhythmias), which can be life-threatening
• Blood clots that can travel to the brain and cause a stroke
• Heart valve problems, such as leaking or narrowing of the valves
• Sudden cardiac arrest (the heart suddenly stops beating)

Long-term outlook

The outlook for cardiomyopathy varies widely from person to person. Many people live long, active lives, especially with early diagnosis and good treatment. Treatment has improved greatly in recent years, and new therapies help control symptoms and prevent complications. Even if your condition is serious, there are many ways to manage it, and your healthcare team will support you at every stage. Staying engaged in your care and following medical advice makes a big difference.

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