Primary biliary cholangitis (PBC), previously primary biliary cirrhosis, is an autoimmune disease that affects the liver. However, symptoms of PBC can occur throughout the body, including various types of pain. This pain can be a direct result of PBC or associated with other conditions PBC can cause, such as edema (severe swelling) and osteoporosis (weak bones).

Members of myPBCteam have reported feeling different types of pain with PBC:

• “I feel so inflamed. Swollen from fingers to toes. I’m in pain.”
• “I feel the pain bad in the liver area.”
• “Woke up extremely tired with diarrhea and a lot of joint pain.”

If you’re diagnosed with PBC and experience pain, it may or may not be directly related to your condition. It is essential to inform your health care provider to determine the root cause and find the most effective treatment. Prescription medications — such as obeticholic acid (Ocaliva) and ‌ursodeoxycholic acid (UDCA, sold as Ursodiol) — are direct treatment options for PBC. Additionally, various over-the-counter and prescription medications can help manage conditions associated with PBC.

Read on for five tips to help ease pain associated with PBC and its complications.

1. Epsom Salts Can Help Relieve Both Pain and Itchy Skin

One of the main symptoms of PBC is itching, which UDCA can worsen. Taking a bath with Epsom salts can help with both muscle pain and itchy skin. The warmth of the bath can help relax your muscles, and the magnesium in Epsom salts may help reduce inflammation, a cause of itching. One myPBCteam member said, “It helps me to take a bath with Epsom salts. Restores a bit of magnesium and eases pains somewhat.”

To try an Epsom salt bath, dissolve about 1 cup of salt in a warm bath. Don’t make the water too hot, as that can actually increase dry skin and itching by stripping away natural oils. Soak for 15 minutes to relax your muscles and reduce inflammation. Don’t drink water with Epsom salts in it, as that can cause diarrhea.

2. Chew Gum To Ease Dry Mouth and Prevent Mouth Sores

The condition Sjӧgren’s syndrome, often associated with PBC, damages the glands that produce tears and saliva, leading to dry eyes and dry mouth. This dryness can be very uncomfortable and may result in painful mouth sores.

While artificial tears and saliva substitutes can help, chewing gum and sucking on hard candies can also help stimulate saliva production. Citrus-flavored varieties are particularly effective, as the acid in citrus boosts saliva production. Choose sugarless or low-sugar gum and candies, as Sjӧgren’s syndrome can increase the risk of dental problems.

3. Exercise and Physical Therapy Can Help With Osteoporosis-Related Pain

PBC can make it difficult to absorb fat-soluble vitamins like vitamins A and D, essential for bone strength. As a result, people with PBC are more likely to develop osteoporosis, which reduces bone density and can cause muscle and bone pain, particularly in the back. It may even lead to fractures with minimal or no trauma.

Over-the-counter and prescription painkillers, along with appropriate vitamin and calcium supplements, can help manage osteoporosis. It is essential to speak with your doctor before starting any new supplements or medications. Gentle exercises, such as Pilates and yoga, can strengthen the muscles around the spine and reduce chronic pain. Stretching and balance exercises have also been found to offset the effects of osteoporosis.

4. Massage and Other Treatments May Reduce Edema-Related Pain

Advanced PBC can cause edema, a buildup of fluid and swelling in the feet and ankles. This excess fluid can stretch the skin, causing pain and discomfort.

Massages can help move excess fluid away from the affected areas and help relieve pain. When performing a massage on yourself or a loved one with PBC, make sure to stroke the fluid toward your torso. A massage therapist can also help show you how to apply the right amount of gentle pressure.

To reduce edema, limit your sodium intake, as salt can cause fluid retention. Diuretics, such as furosemide, can also help reduce edema. Additionally, wearing compression garments, like compression stockings, can prevent fluid buildup before swelling starts.

5. Incorporate Dietary Changes for Jaundice-Related Pain

A healthy liver produces liver enzymes that clear bilirubin, a yellow waste product from old red blood cells, from your body through bile. When the liver cannot process all of the bilirubin, it circulates in the blood, causing jaundice (yellowing of the skin and eyes). PBC can lead to a bilirubin buildup, resulting in jaundice and symptoms such as belly pain and itching.

Dietary changes can help manage jaundice and other PBC symptoms. The American Liver Foundation recommends increasing intake of fruits, vegetables, complex carbohydrates, and whole grains. The nonprofit also suggests moderating your intake of lean meats and avoiding too much sugar and sodium.

Find Your Team

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

What tips have you found for treating primary biliary cholangitis pain? Has your health care provider shared any advice? Share your experiences in the comments below, or start a conversation by posting on your Activities page.