If you have Fabry disease, you may get an episode of intense body pain called a Fabry crisis. Your symptoms may come on suddenly and last for hours or days. There are a number of ways to manage this problem, including medications and lifestyle changes.
Spot Symptoms of a Fabry Crisis
When you have Fabry disease, certain fatty substances build up in your tissue. These fats affect the cells that line your blood vessels. They include the ones in your skin that tell you whether or not something hurts. The nerves that sense pain can go into overdrive.
During a Fabry crisis, a burning pain can start in your hands and feet before it spreads through your whole body. Some people say it feels like their normal symptoms get a lot worse. It may feel like the pain gets in your bones.
You might get symptoms like:
- Shooting, sharp, or knife-like pain
- Joint pain
- Flu-like body aches
- Worsening digestive problems
Avoid Your Triggers
Experts aren't exactly sure what causes pain crises in some people. But they know there are certain situations where they're more likely to happen, such as:
- Physical activity, like sports or running
- Hot weather
Use a pain diary to keep track of your symptoms. That's a good way to pinpoint your triggers. That may help you avoid a crisis in the future.
Try to keep cool when you exercise or go outside in hot weather. Cooling gear, like vests or hats, may help. You can also carry a spray bottle so you can mist your face with cool water. And remember to drink plenty of water.
You can't always predict or avoid your triggers. If you have a pain crisis, try these tips to feel better:
- Get to an air-conditioned room
- Get fast treatment for a fever or infection
- Drink water to cool your body down
Some people rub ice on their skin, but that can make your symptoms worse if you're sensitive to the cold.
Your health care team might give you a mix of medicine. Some drugs prevent pain, while others may help ease your symptoms after a crisis starts. Your doctor might suggest one or more of these medications:
Over-the-counter drugs. Medicine like acetaminophen can lower your fever and lessen some kinds of pain. Ask your doctor before you take ibuprofen or other non-steroidal anti-inflammatory drugs (NSAIDs). They might not be a good choice if you have kidney or stomach problems.
Anti-seizure medications. These can calm down pain signals from your nerves. Common ones used for Fabry disease include:
Numbing lotion. Lidocaine or capsaicin cream may help if you have skin pain in a small area. Your doctor may tell you to put some on before you do physical activity.
Prescription pain medicine. You might get strong drugs, like opioids, if other painkillers don't help.
Lidocaine infusion. This is a full-body pain medicine you can get through a vein in your arm.
Antidepressants. You'll take these all the time, not just during a crisis. Like anti-seizure drugs, they can dampen your pain signals. Options commonly used for Fabry disease include:
- Tricyclic antidepressants, such as amitriptyline
- Serotonin-norepinephrine reuptake inhibitors (SNRIs)
Mental health treatment. You may feel less pain if you get help for your depression or anxiety.
Some ways to manage your stress and your mood:
- Take medicine, like antidepressants
- Talk to a therapist or other mental health professional
- Try cognitive-behavioral therapy (CBT)
- Learn relaxation techniques
It's important to manage your Fabry disease. That's the best way to lessen your painful symptoms. Early treatment can also protect your kidneys and heart from more damage.
Keep track of all the medicine you take. Tell your doctor if your current options don't help. They'll work with you until you find a plan that does.