Fatigue

I was diagnosed a year and a half ago and take urso since about six months before diagnosis. I experience all the regular symptoms i.e. itching, fatigue, and severe joint pain. As of lately though the fatigue, and pain has gotten so extreme that I can barely keep myself up during the day. I have a 3 year old and 6 year old which just makes that very difficult. The pain has gotten to the point that I can't sit down at all during the day or I WILL NOT GET UP AGAIN. Once I sit it's SO HARD to get moving again, then the pain is ridiculous. Just wondering if this is "normal" for most people with PBC

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  • Hi,. I too had the extreme pain and fatigue. I have been on Urso for 17 years. At its worst I was on morphine and pethedine for the pain. It lasted for about 5 years. The pain is not so bad now. I get good and bad days but thankfully more are good. Regarding the fatigue it still is a killer for me. I get most things done in the morning and slow down in the afternoon going to my bed around 6.30 in the evening. My advice to you is try and get a rest when your children are at school and nursery, housework can wait. It's all about listening to your body and finding your energy point. I found the pain and fatigue was worst after a day of cleaning or a really hard day at work. 😊

  • Yes! That's exactly it. I'm cleaning and taking care of my 3 year old all day. Going out for errands, doing regular activities I'm EXHAUSTED. Ughhh I hate this!

  • Hi Cstar1079

    Sorry to read your post but as June9961 suggests pacing yourself and leaving non essential jobs especially with little ones to look after. Is there anyone in your friends/family circle that would be happy to give you a hand? For instance collect the children from school/nursery.

    In the meantime perhaps a visit to your doctor/specialist may get you some medication to help.

    best wishes

  • I'm assuming you are having your bloods = liver function tests, checked regularly, and all is stable? If not they should be done and anything dealt with by your GP.

    Also, have you been thoroughly checked for all other liver conditions, as well as all other autoimmune conditions (people with PBC often get others). Further, have you been properly checked for arthritis, and all osteo-issues? ... as if Vit D is low- 'cos of PBC - then any Vit D and subsequent calcium decrease can cause osteoporosis. Also, any checks for fibromyalgia??

    Is the Urso dose right for you weight? And is your weight okay? Do you manage to get some regular, gentle, exercise that you enjoy - mad as it sounds regular all-over gentle exercise can work wonders, and raise your spirits

    Above all, are you okay otherwise, are you managing to find 'me' time and have fun, enjoy life, do things you love?? Stress and worry and being down are even worse for people with autoimmune conditions, and you need to find time to enjoy yourself, and have down time.

    I would talk to the trained advisors at the PBC Foundation (Link at top of page), to see if they can add anything else, but you need to go to your GP and make them take note. There may be something else going on, and you need all other PBC issues checking. Even if all else is okay, accepting this degree of pain with the PBC is not an option, and they need to treat you. Take someone with you, and have them up to speed on all your issues, questions etc, in case you forget.

    Take care, hope this helps.

  • Thank you Gritty reads,

    I shall message with information.

    Best wishes

    The PBC Foundation

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