If you feel tired all the time and have primary biliary cholangitis (PBC), you’re not imagining it. Fatigue affects around 65 percent of people with PBC and is one of the earliest symptoms they recognize — up to 20 percent of people with PBC experience severe or life-altering chronic fatigue.

Members of myPBCteam often talk about how tired they feel and how much their fatigue affects their quality of life. Often coupled with brain fog, members describe their fatigue as “unexpected,” “exhausting,” and even “devastating.”

Why would a chronic liver disease make you feel so exhausted? Recognizing the causes of fatigue in PBC might help you take more steps to increase your energy day by day. In this article, we discuss why fatigue is so common in people with PBC and explore how the condition impacts your energy.

Why People With PBC Experience Fatigue

Fatigue, or overwhelming tiredness that doesn’t get better with rest, is the most common symptom in people with PBC. However, experts still don’t fully understand how PBC causes fatigue. They know that the level of fatigue you experience doesn’t necessarily correlate with how severe your PBC is or disease progression, and they know fatigue in PBC can be difficult to treat.

Experts believe fatigue in PBC might boil down to two different types of fatigue with separate causes:

Central Fatigue

Central fatigue, described by some experts as a “lack of intention,” reportedly stems from central nervous system (brain and spinal cord) dysfunction and can affect both physical and mental functions. Sleep disturbances and brain fog are both possible features of central fatigue.

Some researchers believe PBC-related central fatigue is directly related to cholestasis. Cholestasis happens when PBC stops or slows the flow of bile through the bile ducts in your liver. Bile acids then back up and affect various organs and tissues, causing inflammation that affects how they function. This includes autonomic nerve centers in your brain, which are responsible for controlling automatic survival functions like your heartbeat and breathing.

Peripheral Fatigue

Peripheral fatigue, described by some experts as a “lack of ability,” includes symptoms that originate in your peripheral nervous system. These are the nerves outside your brain and spinal cord. Peripheral fatigue symptoms can include muscle weakness.

Over half of people with PBC have a sleep disorder, compared with just over 18 percent of the general population.

Some researchers believe the underlying cause of peripheral fatigue in PBC is high levels of lactic acid in the muscles, which causes muscle function to decline. Your body produces lactic acid when your cells use carbohydrates for energy. It’s an anaerobic (nonoxygen) fuel source for cells. Experts have found that the cells of people with PBC-related fatigue use more anaerobic energy than aerobic (oxygen-related) energy, which explains the higher levels of lactic acid.

Factors That Make Fatigue Worse

PBC comorbidities (conditions that occur alongside PBC) and some of its other symptoms might make your fatigue worse.

Poor Sleep

Research shows that people with PBC commonly have trouble sleeping. Over half of people with PBC have a sleep disorder, compared with just over 18 percent of the general population.

For some, sleep problems with PBC are directly related to intense itchy skin that keeps them awake. Others may have trouble sleeping because they stay awake worrying about their health.

In general, people with PBC have a lower quality of sleep, which may contribute to the fatigue they already experience. The severity of PBC-related fatigue appears to be correlated with other signs of poor sleep, like daytime dysfunction.

Anemia

You might experience iron-deficiency anemia with PBC if you also have portal hypertensive gastropathy (PHG).

The portal vein enters your liver, feeding blood from organs like your stomach and spleen. When the blood pressure in this vein gets too high, your body compensates by rerouting the blood through other veins. Those veins expand and can leak, which can lead to PHG or leaking veins in your stomach lining.

Losing blood from PHG can cause anemia, which is a low level of healthy, iron-rich blood cells. Fatigue is a major symptom of anemia, so having anemia from PHG can worsen the fatigue you already have from PBC.

Autoimmune thyroid disorders are common in people with PBC and can cause fatigue.

Thyroid Problems

It’s possible your thyroid is also to blame for some of your fatigue with PBC. Autoimmune thyroid disorders are common in people with PBC, and they often lead to hypothyroidism (a low production of thyroid hormone).

Hypothyroidism is one of the most common hormone-related causes of fatigue. Talk to your doctor about thyroid hormone testing if you also experience symptoms like brain fog, muscle pain or weakness, dry skin and hair, or trouble tolerating cold temperatures.

Low Blood Pressure

Your doctor might prescribe medications to treat portal hypertension (high blood pressure in the portal veins in your liver) with PBC. In some cases, these medications can cause fatigue as a side effect by lowering your blood pressure.

Don’t stop taking a medication due to side effects without first talking to your doctor.

Depression

Some may assume that depression contributes to fatigue in PBC since people with depression often feel tired, speak slowly, and lack motivation. While this may be true for some people, research suggests it’s more common for fatigue in PBC to contribute to depression. However, depression can worsen sleep problems in PBC, indirectly leading to more fatigue.

Managing Fatigue With PBC

While fatigue is extremely common with PBC, it’s important to talk to your doctor about treatment options if you have severe fatigue that impacts your quality of life. Fatigue affects younger people with PBC at higher rates and can affect your ability to work, go to school, or enjoy your favorite activities.

Lab tests can shed light on factors that worsen fatigue, like iron-deficiency anemia, other nutrient deficiencies, and hormone imbalances. To help you manage fatigue, your healthcare provider might recommend:

• Changing medications — If medications make your fatigue worse, your doctor might change your dose or recommend an alternative.
• Treating comorbidities — Conditions you have alongside PBC, like sleep disorders or thyroid disease, might call for treatments other than your PBC treatment.
• Improving your sleep habits — This can be challenging with a sleep disorder, but practicing sleep hygiene habits like minimizing screen time before bed may improve your sleep quality so you feel less tired during the day.
• Exercising — It might sound counterintuitive to manage fatigue with exercise, but regular exercise gives you an energy boost. It also helps you keep your bones strong with PBC.
• Eating a healthy diet — Some foods may help improve energy levels for people living with PBC.

Fatigue affects younger people with PBC at higher rates.

Read more about tips to help with fatigue in PBC.

What myPBCteam Members Suggest

Members of myPBCteam have shared their strategies for managing fatigue:

• “I do believe that physical activity plays an enormous role. ... Simply walking effectively helps.”
• “Several K9 walks per day just perk me up.”
• “I started taking an antidepressant first thing in the morning to help with fatigue and mood. I felt like Lazarus rising from the dead the first 2-3 months, but that feeling has normalized.”
• “I’m good for a 20-minute nap after lunch and then good for the rest of the day. I’m still working full time, so taking a nap at home is fine for days that I’m not traveling.”

Join the Conversation

On myPBCteam, people share their experiences with primary biliary cholangitis, get advice, and find support from others who understand.

How often do you experience fatigue with PBC? Let others know in the comments below.