Yea, it is a struggle. I know she wants to believe me.. but also, she doesn't understand the scope of it. She is a firefighter/paramedic, so I feel like if I could find some good medical articles, then that would help. Mostly it is just bile duct stuff, and reference to liver inflammation pain, not the body pain. I think I am going to take her to my next Rheumatologist appointment.. maybe that will make a difference.
Number one. Never apologies or explain our disease. I get you. We look normal on the outside. This is what they struggle with. Because we look normal, they don’t get us. Yes, we have pain. Our right shoulder is connected to the nerves from our liver. We get shoulder pain. Ursodial causes back pain. Malabsorption is a problem we have getting nutrients into our bones and muscles. Our bones get weaker and we end up with Osteoporosis. Our spleen can be enlarged and it rubs against our ribs. Our liver gets inflamed and also rubs on our ribs. Our ankles can swell. We fight inflammation. Our liver does not function as well as a healthy liver.
I hope your wife educates herself and becomes the supportive partner she said she would be when you took your vows.
Take care of you.
Deb
Hope this helps xx
I have chronic pain everyday sometimes it's so bad I cant get out of bed I take codine and Morphine everyday just to do everyday tasks like the washing doing dishes make a simple meal. Nobody understands the pain because they can't see it. People used to think I was been dramatic till they seen me doubled over vomiting with the pain. I hope you manage to explain to your wife your not been a baby the pain is most definitely real xx
How does PBC cause pain, and what can help explain this to loved ones?
PBC can cause very real pain that affects daily life in multiple ways. The pain is often unpredictable and can strike without warning, making it difficult to plan activities or maintain a normal routine.
Common types of PBC-related pain include: