What are some ways you cope with the fatigue?
How has the fatigue affected your life overall?
What have you found helpful on those days?
finally.......has you doctor ever asked you "how's the fatigue?" I know for me, he has never ever asked me in the 20 years I had PBC before my transplant. Now that the PB has returned some 3 years ago, I'm still waiting for him to ask. 😞
I have never been asked. Diagnosed 2006, first fibroscan 2024. 2 DEXA first in 2017. Only just discovered specialist liver nurse at local hospital who will now take bloods twice a year. As lovely as my specialist is he does not need to see me so I am very happy to have discovered this option.
I'm so glad you found someone else that you seem happy with. It makes such a difference, I know. Lab work should be done every 3-6 months according to the Standard of Care. I often wonder how often the docs even realize that people with PBC even have itching and fatigue. Sad but true....
Once in a while I get hit with fatigue. It doesn’t happen every day and can be really random. Most recently it was at around 10 in the morning after I walked my dog and I’d slept fine. My doctor asks about fatigue and itch every time I see her. Her suggestion was to exercise. Walk every day. It’s counterintuitive but she said there’s evidence regular exercise helps. I do that, but when I’m hit with this fatigue a nap seems to help more.
so glad to hear that she asks you every time... she is not the norm, I'm afraid. I agree that when you are fatigued, the thought of exercising is almost unthinkable. Glad that it sounds like the fatigue is manageable for you. Walking is such good exercise. I think naps have their place as well. I nap nearly everyday...love my naps!
Just diagnosed with PBC
Modafinil ( pro vigil)
Methylprednisolone - PBC
PBC downunder, South Australia here. 
