Fabry disease can leave you feeling drained, but treatment and lifestyle changes can boost your energy.
There are many reasons why you get fatigue from Fabry disease. Ongoing pain, inflammation, and depression likely play a role. Stomach problems like diarrhea can sap your energy, too. And you may feel worn out after you exercise or if don't sleep very well.
Although there's no cure for Fabry disease, treatment can help you manage your symptoms and curb fatigue. Your doctor may give you enzyme replacement therapy (ERT) or an oral medicine called migalastat (Galafold), which can help your own enzyme work better. These target the main cause of your symptoms. There's another one currently awaiting FDA approval.
It can take several months for these treatments to work. Even if your Fabry disease is under control, you can still get really tired from time to time. But these tips can help:
Keep Your Body Cool
Fabry disease can affect the nerves that trigger your sweat glands. You may not sweat very much or at all. You may overheat in hot temperatures or when you exercise. You'll get really tired when your body's cooling system doesn't work. On the flip side, your fatigue might get worse if you're not active at all.
Whether you're in the summer heat or at the gym, some ways to keep cool are:
- Wear cooling gear, such as vests, hats, or neck wraps
- Stay indoors on hot days
- Exercise in an air-conditioned room
- Drink cool water while you work out
- Swim or do water aerobics in a cool pool
- Carry a spray bottle so you can mist your face
Start off easy if you're new to exercise. You're less likely to overheat that way.
Talk to your doctor before you start a new routine. They can refer you to a physical therapist who can design a workout plan just for you.
Get Enough Sleep
You may have trouble falling or staying asleep. And you may not feel rested when you wake up. That can lead to excessive daytime sleepiness (EDS). That's different than general fatigue, but you can have both at the same time.
Your doctor may refer you to a specialist who can look for sleep problems. They may check for obstructive sleep apnea, a breathing problem that affects your sleep.
It's OK to rest throughout the day, but you may want to limit your daytime naps. You may have trouble sleeping at night if you doze off too much during the day.
Manage Your Pain
Your body can get fatigued when it hurts all the time. Pain can also make it hard to sleep.
Treatments with ERT or migalastat may help lessen your ongoing or sudden pains. But that may not be enough. Talk to your doctor about lifestyle changes and other medications that may help.
Focus on Your Mental Health
Stress can wear anyone out. But living with Fabry disease can raise your chances of depression. That's linked with fatigue and sleepiness.
Studies show you may handle your symptoms better when you treat your mental health issues. Your doctor can refer you to a psychologist or genetic counselor who knows about your condition.
To manage your stress, they may suggest you try:
- Mindfulness meditation
- Medication, such as antidepressants
- Talk therapy
- Cognitive behavioral therapy (CBT)
- Relaxation techniques
You may feel better if you talk to someone who is going through a similar situation. You can find more information through the websites of the Fabry Support & Information Group and National Fabry Disease Foundation.
Conserve Your Energy
You may get tired more easily than your friends and family. Say no when you need to. It's OK to save your strength for when you need it.
Don't feel like you need to do even more on your "good" days. Your fatigue may get worse if you don't pace yourself.
When to Talk to Your Doctor
Check in with your health care team at least once or twice a year. They'll want to keep an eye on how well your kidneys are working and make sure your treatment is doing its job.
Make an appointment sooner if your fatigue comes on suddenly or gets worse. Your doctor can check for other health conditions. Your symptoms may not always be from Fabry disease.