Does anyone else suffer with tiredness with PBC

[Jackflash14]

Hi, I am new here. I was diagnosed with PBC in 2020. I am on medication, which we are still trying to find the right balance of, but really my question is does anyone else suffer with extreme tiredness? I am a relatively busy person with work etc, some day's I'm OK but some day's I feel so tired and drained of energy, I could sleep for a week. I get so frustrated. I know there is nothing you can take for this, and I have been told it is one of the symptoms, and gentle exercise would help, but quite frankly that is the last thing I feel like doing!! I would just like to know that I am not on my own with this.

[Readlots]

I know exactly how you feel but haven’t found a solution yet. I think B vitamins help but other that it’s just about pacing yourself. I gave up work at the end of April but before that I used to start early in the morning so that I could finish early. I also had a policy of not sending emails after 3pm because I knew there would be mistakes if I was tired. My boss was fantastic and we agreed not to have important meetings in the afternoon. She was also happy for me to take extra breaks when I needed them. It is frustrating but you do learn to live around it. It might also be worth asking for an occupational health assessment in case they can suggest workplace adjustments for you. Off to have a nap now 😴

[borzoiharvey]

I know how you feel, truly. I don't know what to do. If I do find out anything to help I will post it. Rest, do things when you can, eat well - and I am fed up with all that. Best of luck.

[LorraineLouise in reply to borzoiharvey]

I too have PBC and suffer from exhaustion. It seems to come in waves. I was diagnosed in 2016. Have been on Urso ever since. I still always have high Alk Phas labs. I’m still working. On my days off , I just could sleep all day. Exercise on some days is out of the question. I’m sorry your dealing with the same.

Best wishes!

Lorraine Louise