Is this something that is related to PBC or is it as a result of extra rest taken in the day?

I need to sleep or rest every day and still feel tired at bed time, yet I inevitably wake early hours (usually 3ish). Despite all efforts and feeling the need for sleep I remain awake for hours. I am also woken with the itch regulary so now I feel as though my sleep is becoming a nasty pattern. Does anyone else suffer like this as I'm sure its getting worse.

10 Replies

  • Hi I know exactly what your talking about. I cant go all day without a sleep, go to sleep when I go to bed no problem because I am so tired but nearly always wake at that 2.30 - 3.00am slot. Im restless and cant back to sleep for 1 - 2hrs, consequently I am tired when I get up. And so it goes on.....unfortunately the doc is baffled as to why as well. Personally I think it is related to PBC as I never had sleeping problems before, and for me at least, PBC can make me restless and agitated at times, but thats just my view.

  • Hello all. Me too! I have to say that in the last 6mths I may feel slightly tired during the day but not really to want to go to sleep. My husband and I rise at 6a.m. Mon-Fri (tho' odd days I find I have to skip and rise an hr later) so I spend around 16hrs per day awake.

    I start flagging as I call it around 9p.m. but usually 10.30 - 11p.m. when we retire to bed. I find if I'm on a roll (not started to itch as happens now in the evening time), I go to sleep but then I wake suddenly a few hrs later. If I am having a good night I can fall back asleep but if not I toss and turn for hrs and then I do get up in the morning feeling as tho' I've not really been to bed. Not sure if it is related to PBC in my case as I started having regularly broken nights' sleep due to my first late husband wheezing on/off during the night due to asthma. After his death in 1993 I went thru what is probably the norm in grieving and then slowly being a woman then spending the first time in her home overnight with 2 young children I woke regularly. That part passed of being on my own but I think for me it became a vicious circle.

    When I worked from 11a.m. until 3p.m. Mon-Fri up until a few yrs ago I could come home in the afternoon and then sit down and fall asleep. This may have been at the timePBC which was then unknown to me (diagnosed 2010 after the onset of the itch).

    I am finding that despite waking up thru the night regardless of what I have done during the day, very active or mildly active, I am finding it better to not sit down and sleep thru the day as I have it in mind that I need to feel tired and sleepy when I retire to bed of an evening to blot out the itch if it has appeared. I also find that if I don't eat more than a piece of fruit or maybe a couple of plain biscuits during the evening I'm not retiring to bed with a full stomach as I certianly know now if I have an evening meal later than 7p.m., I then wake with a bit of an achey tum.

  • Hi, I have the same problems, I fall asleep every afternoon, I just cant stay awake, I start to flag about 3 PM and then at night I can't sleep and lie there for hours sometimes I wake about 2am and am then tossing turning and scratching till about 4 am ish till I nod off again, but a lot of my problem is I am also getting drenching sweats through the nights. I have also got up on quite a few occasions as I feel the need to eat through the night.

  • Hi, after i've done my chores or walk the dog I find myself very tired for the rest of the day and have to have a nap, which is a bit pointless like some of you I find if difficult to fall asleep at night. If I don't nap then Im very cranky and my eyes are sore.

    I have a neck/shoulder problem at the moment and I am seeing the physio but that also keeps me awake at night. I have had some night sweats but not every night so Im not sure what that could be.

  • yup - same here -- i did not sleep last nite as i had the night sweats most of the night -- can't wait to take a shower! -- tho right NOW i am too Tired to stand in the shower. --

  • I also has severe fatigue. It got so bad that my concentration levels at work were very bad. I went on disability last June, so I should be good now right? But I'm still tired. I have not been reacting the way my doctor had hoped on URSO and my levels have been climbing regularly for the past 3 yrs+. I also have an enlarged spleen. My doctor, though the rise in my levels have alarmed him, seems to think that the fatigue is normal. After all I have both my liver and spleen working a little bit harder then others do. I was told to give in to the fatigue when I'm tired and not stress over how many naps I take, or what other think of it. Because I look healthy and when I'm not scaring up my body with the scratching or taking a nap, it is hard for others to think of me as ill.

  • Hi SLWB, can I ask you what your ALT & AST levels are for the PBC? I know what you mean about people saying you look well! Even the nurse taking my blood today said that! Shame they cannot walk in our shoes for a day or see what is going on inside our bodies. Just got to get on with life and deal with the symptoms when they happen. Stay positive, x

  • My Alkaline phosphatase is high 974, with a normal level around 130. I have requested to have my other blood test results from my doctor, so I'm not sure of the other levels. I will pick them up at my next appointment.

  • Yes, I too am having trouble sleeping. Was diagnosed with PBC 6 months ago, have been having weird sleep patterns since . I don't nap, go to bed at about 10:30 pm and wake up 1:00 am or so feeling itchy, agitated and hungry. I do feel tired in the morning. Have not told Dr. yet, but my 6 month blood work is scheduled. Also find it difficult to get comfortable when I lay down because my liver "feels" tender. Night is the worse time for me.

  • I was like that for about a year before I was diagnosed (my consultant said it was my liver waking me up to eat as it needed energy to function). However, since I was diagnosed and am on medication I usually sleep right through. I don't rest during the day but get sleepy and am really ready for bed by 9/9:30. Usually go to bed by 10:30pm and most nights asleep immediately. I get up at 6am. This seems to be my habit now and works for me. I do notice when I have to stay up longer if I am out of special occasion I can do it but next day am more tired. If I can grasp a nap during the day before a big night I do. I feel like a kid again :) or Scarlett O'Hara in Gone with the Wind!

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