Fatigue is one of the first symptoms experienced by 65 percent of people with primary biliary cholangitis (PBC), formerly called primary biliary cirrhosis. “I’m just so tired all the time,” said a myPBCteam member. “I wish I could feel energetic for an entire day!”

Fatigue from an autoimmune disease like PBC is different from just feeling tired after a long day. The symptoms of PBC-related fatigue may include ongoing muscle weakness, lack of motivation, and cognitive impairments. While most people with PBC have some level of fatigue, 20 percent report severe fatigue, which significantly affects their quality of life.

Researchers have tried to figure out how to treat fatigue in PBC. One trial tested the stimulant modafinil (Provigil) to help reduce fatigue in people with PBC, but the treatment failed to show a significant improvement compared to a placebo. Unfortunately, many of the interventions that are effective for treating PBC itself, including ursodeoxycholic acid (also called ursodiol or UDCA), obeticholic acid (Ocaliva), and liver transplants, don’t seem to alleviate fatigue. That’s why it’s so important to discuss fatigue with your doctor, even when you’re following other recommendations for managing your PBC.

Here are some ideas to help put the pep back in your step and stop PBC-related fatigue from holding you back.

1. Be More Active

It may seem counterintuitive, but physical activity helps prevent muscle fatigue in people with PBC. While you may wonder how it’s possible to be more active when you’re already so tired, small changes that break up sedentary time can go a long way toward improving your energy levels and stamina. Start with small goals, like a five-minute walk every morning. If possible, use an indoor exercise bike at a comfortable pace while you watch TV or read. You can also focus on deep breathing and stretching as a low-impact way to move more.

People with PBC have an increased risk of certain complications that affect their ability to work out. For example, portal hypertension or osteoporosis can put your safety at risk during strenuous exercise. Ask your health care provider before starting an exercise program. They can help you find appropriate ways to do it without injuring yourself. They may also refer you for a stress test or a few sessions with a physical therapist to determine the best types of exercise for you.

2. Try Light Therapy

One reason people with PBC may feel so fatigued during the day is because they’re not getting enough quality sleep at night. To help regulate the natural sleep-wake cycle, researchers did a pilot study to see the effects of 45 minutes of bright light treatment first thing in the morning for a small group of participants with PBC.

After 15 days of light therapy each morning, the participants reported better sleep and less daytime sleepiness. While larger studies are needed to confirm these results, light therapy is a low-risk treatment option with the potential to help treat PBC-related fatigue. You can purchase light therapy boxes online — look for boxes with 10,000 lux.

3. Take Short Naps

While it’s important to try and stick to a consistent sleep schedule, sometimes a midday nap can give you the energy boost you need to get through the afternoon. “I got a 20-minute power nap, and that helps,” said a myPBCteam member. When done the right way, naps can improve your alertness, reduce fatigue, and boost your mood.

To avoid interfering with sleep, naps shouldn’t last too long. Shorter naps (from 10 to 20 minutes) will give you some rest and prevent you from getting into such a deep sleep that you wake up feeling more exhausted than when you started. In addition, napping earlier in the day will ensure you can still get to bed at your usual time in the evening. Avoid taking naps after 3 p.m. to keep from negatively impacting your bedtime routine.

4. Review Your Medications

Doctors often recommend antihistamines like diphenhydramine (Benadryl) for another common symptom of PBC, itchy skin. Pruritus (itching) is the second most reported PBC symptom. It affects about 55 percent of people with the liver disease. Although antihistamines like diphenhydramine can help reduce the urge to scratch, they can also make you feel groggy when taken during the day. Most antihistamines should be taken close to bedtime. This will prevent side effects like trouble concentrating and sleepiness from interfering with your day.

You can ask your doctor or pharmacist if any of your other medications (prescription or over the counter) may contribute to your feelings of fatigue. They may suggest ways to adjust the dosage or the timing of your medication.

5. Consider Nutrition (and Supplements)

With PBC, your digestive system doesn’t always have the bile acid it needs to absorb certain nutrients from the intestines, especially fats and fat-soluble vitamins.

These include:

• Vitamin A
• Vitamin D
• Vitamin E
• Vitamin K

Over time, PBC can lead to nutrient deficiencies, malnutrition, and weight loss. However, some members have said extreme fatigue caused them to gain unhealthy weight, which can also lead to feeling worn down. “I was tired of it all on top of being ‘tired’ all the time. I had really increased my weight because I ate chocolate bars and drank copious amounts of coffee to fuel me up to get through my days,” explained one member.

Your doctor can run blood tests and check for deficiency symptoms or signs of other metabolic problems that can affect energy levels, like prediabetes. They may recommend nutritional supplements to ensure your body is getting what it needs to function at its best.

You shouldn’t take supplements without talking to your doctor first because they may interfere with your other medications or be difficult for your liver to handle. However, if you’re advised to take supplements, set reminders to take them as directed. You can also meet with a registered dietitian nutritionist to learn how to get adequate nutrition and choose foods that provide energy and promote good health.

6. Seek Social Support

It always helps to know that you’re not alone in dealing with the challenges of PBC. Friends and family can’t always understand or relate to what you’re going through, but other people with PBC may share similar struggles.

Some myPBCteam members encourage each other to stay positive in the face of fatigue. “It’s tough when it feels like others don’t get just how draining it can be. Taking some time to rest and recharge is so important, even if it’s just finding a quiet moment to sit with your thoughts and take some deep breaths. … Sometimes, it’s about celebrating those small victories, like making it through a busy day,” shared one member.

Getting the support you need through in-person or online communities can make it easier to shoulder your symptoms. You can also ask your doctor to refer you to a mental health care provider if you believe depression may be depleting your energy levels.

Talk With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

What side effects of chronic liver disease do you find most challenging? Did you experience fatigue in the early stages of PBC or not until more advanced disease progression and liver damage? Share your experience in the comments below, or start a conversation by posting on your Activities page.