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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi everyone! The symptom that has had the greatest impact on my life is severe unrelenting fatigue. How many of you can relate?

A myPBCteam Member asked a question 💭
Daytona Beach, FL

The fatigue is overwhelming. No amount of sleep, including taking naps, seems to alleviate it. I also have difficulty falling asleep and waking up in the morning even when I set my alarm. I retired a year ago after a 32 year career in secondary education. I was beyond exhausted. Thought retirement would help with the fatigue. Unfortunately, it has not.

July 24
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Reactions
A myPBCteam Member

Oh for sure fatigue was actually why I even made the doctor's appointment back in 2021 when I was diagnosed

July 29
A myPBCteam Member

Fatigue is REAL, mine is getting worse.

July 28
A myPBCteam Member

Hey Lew. When I was first diagnosed I went “crazy” doing research. Not everyone of us will have the same experience. I decided to just deal with symptoms as and when they occurred, and I’m now almost 71. I was diagnosed when I was 40. I think the fatigue is the biggest challenge, especially when you are working. I kept my condition hidden at work. Back then it was still called Primary Biliary Cirrhosis, and people would just assume you were a drinker. I think it’s a process you go through as you parse out what is happening with your body. I’ve had a low fat diet ( no fish and chips for this Cookie 😫 for 30+ years)!😂😂😂, drink lots of water, and keep moving. All the best (to us all).

July 28
myPBCteam

What you're experiencing is incredibly common with PBC — you are absolutely not alone in this. Around 65% of people with PBC experience fatigue, and up to 20% describe it as severe and life-altering. Many myPBCteam members describe their fatigue as "unexpected," "exhausting," and even "devastating."

The frustrating truth Show Full Answer

What you're experiencing is incredibly common with PBC — you are absolutely not alone in this. Around 65% of people with PBC experience fatigue, and up to 20% describe it as severe and life-altering. Many myPBCteam members describe their fatigue as "unexpected," "exhausting," and even "devastating."

The frustrating truth is that PBC-related fatigue doesn't always improve with rest, and it doesn't necessarily reflect how advanced your condition is. That's what makes it so hard to manage. The sleep struggles you're describing are also very common. Over half of people with PBC have a sleep disorder, compared to just 18% of the general population. Poor sleep and fatigue can feed into each other, making both worse.

There are a few things worth discussing with your doctor, including:

- Sleep habits — Reducing screen time before bed and other sleep hygiene practices may help
- Nutrient levels — PBC can affect absorption of key vitamins, which impacts energy
- Thyroid function — Thyroid issues are a common comorbidity of PBC and can worsen fatigue significantly
- Medication review — Some medications can contribute to fatigue as a side effect
- Gentle exercise — It sounds counterintuitive, but even short walks have helped many myPBCteam members feel more energized One myPBCteam member shared that simply walking each day made a real difference for them. Another found that a short 20-minute nap after lunch helped them get through the rest of the day.

It's worth having an open conversation with your doctor specifically about fatigue — even if your other PBC management is on track, fatigue often needs its own attention.

July 24
A myPBCteam Member

What’s even more irritating than the relentless fatigue, is your doctor dismissing it as non-related to PBC. OK, I’m 84 and have no expectations that my body can operate at the same level as even several years ago. I take Ursodiol and my test numbers and scans are good but going downhill more every day.

July 28

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