Managing your heart in FA: Practical tips and monitoring

Knowing how Friedreich’s ataxia (FA) affects the heart and what you can do to monitor and care for it can help you to take an active role in your health while living with FA.

The most common heart problem in FA is cardiomyopathy, a heart muscle disease that can lead to heart failure and arrhythmias (irregular heartbeats). While not all FA heart problems cause obvious clinical symptoms, you may find yourself experiencing extreme fatigue, chest pain, shortness of breath, or heart palpitations.

These symptoms can sometimes be subtle or mistaken for other effects of FA, so monitoring heart symptoms at home can help with early detection and care.

Incorporating healthy habits and practicing stress management for FA can also help you protect your heart.

Build heart-healthy habits

Making heart-friendly lifestyle changes that fit your abilities and energy levels can help reduce strain on your heart.

For instance, engaging in low-impact conditioning exercises, such as swimming and gentle aquatic exercises, may help improve heart and lung function, boost your overall endurance, and increase your energy levels.

A balanced diet rich in whole foods and heart-healthy fats, and low in salt, can also support overall heart health in FA by helping maintain healthy blood pressure and reducing inflammation. Although a healthy diet won’t prevent cardiomyopathy, it can help prevent other types of heart disease associated with diet.

If you have other conditions, such as diabetes, keeping your blood sugar and overall wellness in check can further protect your heart.

These practical wellness tips recognize the challenges of FA while helping you build a heart-health routine that works for you.

Keep an eye on your heart

Staying proactive about your heart health and knowing how to recognize FA heart symptoms can help you catch problems early.

Watch for signs such as:

• palpitations or irregular heartbeat
• shortness of breath or chest discomfort
• dizziness or fainting spells
• swelling in legs or ankles
• increased fatigue or reduced exercise tolerance

Monitoring heart symptoms can be done by keeping a wellness journal or using an app to track your energy, mood, and heart or other FA symptoms. This can help you notice changes and share information with your care team.

If you experience sudden chest pain, severe palpitations, fainting, or other acute symptoms, seek emergency medical care promptly, as these could signal serious heart complications requiring immediate attention.

Work with your healthcare team

Your healthcare team plays an important role in protecting your heart health with FA.

Beyond diagnosing the condition through genetic testing, they can also monitor how FA affects your heart over time and guide your treatment plan.

Regular heart monitoring helps detect issues early and informs the best course of care. Your team may recommend:

• regular echocardiograms to check heart muscle thickness and function
• electrocardiograms to detect arrhythmias
• blood pressure and other vital sign checks
• a review of your medications and any new symptoms

While working with your FA healthcare team, consider preparing questions to communicate your concerns better and understand your individual risks. Ask your care team which heart symptoms to watch for, how your FA treatments may affect your heart, and what steps you can take to support your cardiovascular health.

Reduce stress on your heart

Lowering daily stress helps ease the workload on your heart and can improve how you feel emotionally and physically.

You can try:

• deep breathing or meditation exercises done from sitting or reclining positions
• gentle yoga or tai chi movements adapted to your abilities
• creating a calming daily routine to manage fatigue and stress
• avoiding triggers like extreme heat or overexertion that can worsen symptoms

FA support groups and mental health counseling can also help if you’re feeling stressed or overwhelmed.

Use practical daily reminders

Simple heart monitoring strategies that fit into your routine and make heart care in FA more manageable can include:

• alarms or phone reminders for medication and appointments
• checklists to track daily activities and symptoms
• visual cues around your living space to encourage heart-healthy habits

Seeking expert medical advice and following heart care strategies at home are integral parts of heart health treatment in FA, helping manage symptoms and support your well-being every day.