Tips for Managing Fatigue When You Have Fabry Disease
About Fabry disease
Fabry disease is a rare genetic lysosomal storage disorder characterized by an impaired ability to break down a specific type of fat known as globotriaosylceramide (Gb3 or GL-3). This results in the accumulation of GL-3 inside cells, which interferes with organ function and causes symptoms such as chronic pain, gastrointestinal problems, kidney dysfunction, and heart disease.
Fatigue in Fabry disease
It’s not known precisely why people with Fabry disease experience fatigue, but they do. In one study of 49 Fabry disease patients, 48% reported chronic fatigue as a prevalent symptom. In addition, 68% listed excessive daytime sleepiness.
Chronic fatigue can have a significant impact on quality of life. While a common symptom in those with chronic kidney or heart problems, it also appears in Fabry disease patients who show no such dysfunction. Speculation is that primary sleep disorders in people with chronic fatigue are undiagnosed.
There also is speculation that fatigue in Fabry disease may be linked to the disorder’s overall burden on the body, or to secondary causes such as low thyroid function, or low levels of vitamin B or D.
Ongoing pain, inflammation, and depression in Fabry disease also could play a role in chronic fatigue, as can energy-sapping problems such as diarrhea. Dialysis also can cause fatigue.
Tips for managing fatigue in Fabry disease
To help reduce fatigue resulting from chronic pain, which can make it hard to sleep, ask your doctor about lifestyle changes or pain medications.
Enzyme replacement therapy, which addresses the underlying cause of Fabry disease, also can help reduce pain.
You also should try to keep your body cool. Fabry disease can affect the nerve cells that control your sweat glands, causing you not to sweat, or sweat very little. You may feel extra hot in high temperatures or when you work out. This can lead to fatigue.
Here are some ways to avoid overheating:
- Wear cooling gear, such as neck wraps or vests.
- Stay inside on hot days.
- Drink water while you exercise. (Always consult your physician before starting a new routine).
- Swim or do water aerobics in a cool pool.
- Carry a spray bottle so that you can mist your face.
Getting proper sleep
Your doctor may refer you to a specialist who can check for problems such as sleep apnea. You also may try to limit your daytime naps so that you don’t have trouble sleeping at night.
Staying mentally fit
Because depression in Fabry disease can be linked to fatigue and sleepiness, try to keep stress levels in check. Your doctor can refer you to a psychologist or a counselor who is familiar with your condition.
You may want to practice mindfulness, yoga, or other relaxation techniques. Cognitive-behavioral therapy, or talk therapy, may work for you.
Conserving your energy
Because you may tire more easily than your friends and family members, it’s fine to say no when you need to, so that you have the energy for when you need it. Your fatigue may worsen if you don’t pace yourself.
A metaphorical approach called the spoon theory can help family and friends understand what you go through regularly, and why you may not be able to keep up with them all the time.
Talking to your doctor
Your physician will check your kidneys at intervals to see how they’re functioning.
If your fatigue comes on suddenly or worsens, consider alerting your doctor.
Last updated: Nov. 6, 2020
Fabry Disease News 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 providers 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.