What Causes Primary Biliary Cholangitis Fatigue — and How to Get Your Energy Back

“Fatigue can vary,” says Frances Lee, MD, an assistant professor in the division of liver diseases at Icahn School of Medicine at Mount Sinai in New York City. “Some people find it manageable, while others say they can’t work, leave their house, or complete basic functions because of excessive fatigue.”

Even though this type of fatigue is complex and often unpredictable, it isn’t something you have to push through. There’s no quick fix, but addressing underlying causes of fatigue and using strategies to preserve your energy can help improve your quality of life.

The exact cause of fatigue in PBC isn’t fully understood, but it may be related to underlying inflammation caused by PBC, says Dr. Lee.

PBC fatigue may include both central and peripheral components.

PBC itself brings with it fatigue, but other symptoms, conditions, and lifestyle factors can further drain your energy. Identifying and addressing these “energy thieves,” such as malnutrition, bleeding, and other medical issues, may help reduce the overall impact of fatigue.

PBC Itch

Applying a cool compress to your skin, moisturizing before bed, and wearing loose, breathable pajamas can help ease the itch. You may also want to talk to your doctor about topical anti-itch creams or other treatment options that can help.

Sleep Disturbances

If you experience frequent sleep disruptions, tell your doctor, who can help identify underlying sleep issues.

Other Health Conditions

Your doctor can evaluate you for autoimmune conditions and possible autonomic dysfunction and may refer you to specialists for further testing. Managing and treating underlying conditions may help improve fatigue.

Mental Health Conditions

Working with a mental health professional can help you manage anxiety, depression,  and stress that can arise from living with a chronic condition, which may improve energy levels.

Nutrition Deficiencies

Your doctor can test the vitamin and mineral levels in your blood and recommend supplements if needed.

Medications

Review the list of medications you take with your doctor to see if any adjustments could help prevent or reduce these side effects.

Fatigue may feel overwhelming, but a combination of lifestyle changes and practical strategies can help preserve energy.

“It’s about setting expectations,” says Lee. “What are good days? What are bad days? What can you manage?”

Implementing these strategies can help:

Practice Good Sleep Hygiene

Try these healthy sleep habits:

• Go to bed and wake up at the same times every day.
• Keep your bedroom comfortable, cool, and dark.
• Avoid alcohol, caffeine, and large meals close to bedtime.
• Shut off devices, such as your TV, phone, and computer, at least 30 minutes before you go to bed.
• Unwind with a relaxing bedtime routine, which may include taking a bath, reading, or meditating.

Conserve Your Energy

Energy conservation involves finding ways to use less energy to do daily tasks. Focus on planning ahead, prioritizing tasks, and pacing yourself:

• Space out tasks, such as grocery shopping and laundry, so you’re not doing them all in one day.
• Prioritize tasks and plan to do the most important ones when you have the most energy.
• Take breaks between tasks or rest as often as you need.
• Use adaptive devices, such as a shower chair, reacher, mobility aid, or electric can opener, to help make tasks easier.

Ask for Help When You Need It

Remember, you don’t need to do everything yourself. It’s okay to ask trusted family members or friends for help when you’re feeling fatigued. Be specific about what you need, whether it’s help cleaning your house, doing your grocery shopping, or driving your children to school.

If fatigue significantly affects your ability to work, you may also be able to ask your employer for accommodations under the Americans With Disabilities Act. These may include longer break times, the option to work from home, or an ergonomic workspace.

Eat Smart to Fuel Your Body

A well-balanced diet can help provide the nutrients and energy your body needs to function. There’s no one diet that’s right for everyone with PBC, but in general you should aim to:

• Include a variety of anti-inflammatory foods, such as fruits and veggies, fatty fish, whole grains, and nuts and seeds.
• Eat smaller meals every three to four hours to help keep blood sugar steady.

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• Drink plenty of water to help prevent dehydration, which zaps energy.
• Cut back on foods high in sugar, which can cause energy levels to crash.
• Limit alcohol, as it can disrupt your sleep (and have a negative impact on your liver).

Strategies such as preparing and freezing meals, buying vegetables that have already been chopped, or using a grocery delivery service can help make cooking easier when you’re fatigued.

Your doctor or a registered dietitian can help you develop a meal plan to manage PBC and maintain your energy.

Exercise Regularly

If you’re new to exercise, start with just a few minutes at a time, and gradually increase the duration as you become more comfortable. Gentle activities such as walking, tai chi, or cycling are all good options when you have PBC.

Try Mind-Body Practices

Mind-body therapies, such as acupuncture, deep breathing exercises, meditation, mindfulness, and yoga, can help reduce stress, improve sleep, and boost mood.

Take Medication as Prescribed

“There are people who feel tired, and then they get started on the correct medication, and they feel better,” says Lee.

Also be sure to talk to your doctor about whether other medications you’re taking may be making fatigue worse. If so, your doctor may recommend adjusting the dose, changing when you take it, or switching to an alternative medication to help reduce fatigue.

• Fatigue is a potentially debilitating condition that affects up to 80 percent of people with primary biliary cholangitis.
• Inflammation, itch, nutrition deficiencies, and other autoimmune conditions can contribute to fatigue in people with PBC.
• Eat a balanced diet, practice energy conservation techniques, prioritize sleep, and stay active to help fight fatigue and restore energy.