Living with primary biliary cholangitis (PBC) can feel confusing and overwhelming, especially when pain starts long before you get a diagnosis. Lisa Garza, a myPBCteam member, described how chronic, intense pain has shaped her daily life and shared her strategies to manage PBC and stay positive.

Years of Pain Without Answers

Lisa’s pain began long before she had a name for it. “It took years for me to finally get a diagnosis,” she said. Sharp pain on her right side, just below her ribs, sent Lisa to the emergency room more than once. “Nothing ‘abnormal’ would show up from brief testing, and they would send me home,” she said. “I experienced this for over 15 years, off and on.”

Blood tests showed high levels of alkaline phosphatase, an enzyme often linked to liver issues. However, no one began connecting the results to PBC until Lisa met with a gastrointestinal (GI) specialist. “Approximately seven years ago, I went to a very good GI doctor who took the time to really listen to me,” she said. After a careful review of Lisa’s symptoms and history of blood test results, this doctor moved her closer to the eventual answer: “He diagnosed me with PSC, which turned out to be PBC.” Primary sclerosing cholangitis (PSC) is a different liver disease that can cause symptoms similar to those of PBC.

By then, pain had become a near-constant companion. “It has been so long that I’ve been living with pain from my liver, I don’t remember not having it,” Lisa said. “The past two to three years, it has really increased to more daily pain that comes and goes with no obvious trigger.”

A Sharp, Stabbing Sensation

Lisa described her pain vividly: “Sharp, intense under my ribs, right flank, and radiates to my back at times. Sometimes it shoots across my upper abdomen from right to left, like a piercing arrow or sharp, thin knife.”

The pain is unpredictable and disruptive. “It catches me by surprise, so it makes me stop in my tracks for a few minutes before I can get moving again,” Lisa said. “Sometimes it wakes me up at night. I have to get up and slowly sit up before I can walk around to get my mind off it and go back to sleep.”

Impact on Daily Life

Living with PBC pain has changed Lisa’s lifestyle in many ways. Because the pain can come on without warning, making plans or spending time with others can be difficult. “My pain is unpredictable and can happen at any time,” she shared. “It makes it hard to have a social life because it can make me feel really lousy for a while afterward.”

Lisa also lives with celiac disease, so she prepares her own meals, which is challenging when experiencing pain from PBC. “My PBC pain makes me nauseous most days and makes it hard to cook or bake,” she said. “I make all my food, including bread or rolls.”

Pain-related fatigue also gets in the way of both spontaneous activities and planned parties. “It is hard to be up and ready to go do something fun or just exercise at a moment’s notice,” Lisa said. “My life is slower, more painful, and not focused on celebrations with food anymore.” She added that in many cultures, these events are often a big part of holidays, birthdays, and anniversaries.

A Well-Rounded Pain Management Routine

To manage daily pain, Lisa has built a thoughtful routine focused on both her mind and her body. “I listen to guided meditation a few times a day to assist me with stress, pain, and wellness management,” she said. “I also listen to help me sleep or when I have insomnia.”

Lisa carefully watches meal timing and portion sizes: “I eat small mini meals or snacks throughout the day so that my stomach isn’t empty and causing pain. I also don’t eat past 5 p.m.” She stays hydrated by regularly drinking filtered water both day and night.

Gentle, low-impact exercise also helps. “I exercise in a therapy pool that is heated, so I can walk, jog, and move everything to get a full-body resistance workout without gravity — I love it!” she said. Gentle yoga helps her stay flexible: “It feels good and helps offset pain.”

Lisa’s self-care also includes practicing gratitude and managing stress. “I don’t watch bad news, TV, or stressful shows,” she shared. “I keep goodness in and tell myself to release the bad … pain.”

Lisa strives to be upbeat, speak up for what she needs, and give back when possible: “I try my best to be positive and advocate for all of my health challenges. I have a long list, so I volunteer as best as I can,” she said.

The Power of Positivity

When asked what helps the most, Lisa emphasized the importance of mindset. “It all comes down to staying positive and sharing kindness,” she said. “It makes my heart feel good, and I think it activates natural endorphins to diminish the pain signals.”

Trial and error taught her some of her most valuable lessons, especially regarding diet: “Which foods can I still eat, and what do I have to say goodbye to? I have to be careful with raw vegetables, and I have to very finely chop my favorite steamed broccoli with a little lemon juice.”

She emphasized the importance of small portions: “Overeating is not an option — it just makes me miserable.” Her reduced appetite helped her adjust to eating small amounts, she said.

Advice for Others With PBC Pain

Lisa encouraged others living with PBC to seek out compassionate medical care. “Make sure you have a good team of doctors that you are able to talk to freely,” she advised. “Ask about medication and guidance about how your current symptoms can be best managed — pain, itching, and fatigue.”

She described the frustration of having her symptoms dismissed early on. “My original doctor never acknowledged that those were symptoms of PBC, and it made me crazy because I felt so awful,” Lisa said. “I think when your doctor acknowledges your symptoms, it helps you accept the process and do your best to manage your challenges.”

Lisa hopes that by sharing her story, she can help others feel less alone: “I want people with PBC to know that they are not alone with this pain. Hopefully, in an odd way, that is comforting.”

Finding Peace Through Rest and Self-Care

“Living with PBC pain has taught me to be grateful for the good days and to be OK with bad days,” Lisa reflected. “Don’t fight the pain, because it only makes it worse.”

Lisa now embraces rest as a vital part of healing. “Allowing yourself to go back to sleep is probably what your body needs to heal and recharge. I used to feel guilty if I felt like I wanted to take a nap. Now I call it self-care for a better me,” she said. “I need sleep just like I need good fresh food, filtered water, and exercise, and that’s OK!”

Join the Conversation

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

Do you experience pain from PBC? How has it affected your life? Let others know in the comments below.