I want to sleep!!!!

its 3am and I am sat here writing this post, tried to sleep but given up made a cup of tea. Last night slept all night, bliss!! unusual. My fault had a spicy chicken for tea!!!! suffering now, aching in my right side just below my rib cage, feeling sick, and hot, why didnt I have something boring, and tasteless then I would be fine. I was diagnosed with PBC 2 years ago, and now have to watch what I eat, fatigue, itching, dry eyes, dry mouth this list goes on, but I look healthy!!! Anybody feel the same? Sorry for the moan, finish my tea go back to bed and try again to sleep, so I will say goodnight!!!!!

19 Replies

  • Good night and I hope that you can get sleep and feel better. I'm sorry that you're not feeling well

  • I've also been sat up for hours with the same thing! Had a very small vodka on Saturday night after working too many 12 hour shifts in a row and that set off my pain really bad and did I learn? No! I went on to have a BBQ yesterday so here I am drinking milk, trying to pass wind, wee absolutely anything to get the swelling and pain down lol it's not fun or lady like is it :-( hope you feel better soon

  • I often find I t hard to sleep. I start feeling tired and usually go to bed - can be as early as 8 o'clock and sleep well throughout the night. However, if I stay up and don't go to bed then when I do try I can't and lie awake for hours! Must listen to my body!

  • Hiya, I find that anything that takes longer to digest , pastry,fried foods, spicy food ..I can eat but always have gaviscon straight after, I find that stops it.OtherwisenI am up all night too....always carry gaviscon with me in the sachets.

  • I'm the other way sleeping for 12 in 24 hours..... hope you feel better soon x

  • Sandie - sadly we pbcers must listen to our bodies or face the consequences 😥.

    I have recently been diagnosed as Coeliac as well so it's now life without gluten too and favourite was crusty bread. I try not to eat fatty, spicy or alcohol for the Pbc and my GP says I'm borderline type 2 diabetes so must restrict sugar. Not much left that tastes nice!

    On the plus side, feeling well, going out, having holidays, enjoying treats that don't involve eating compensates. So I have a sort of contract with my body which says we are not going to hurt each other are we 😁.

    Hope this helps honey. 😃

  • i was diagnosed almost a yr and im having issies with sleep too..thats the first thing my dr asked me was how do u sleep at nite i know it sucks seeing him in may will be talking about it with him thats for sure

  • Christine00450. I take sleeping pill. That at least gives me about 5 - 6 hours sleep, which is enough for me

  • trying not to do that just yet

  • thxs all for the info

  • Hi Sandie1; I find taking 3mg melatonin 30-60 minutes before bedtime helps to get to sleep. I find if I wake thru the night, very difficult to get back to sleep-- not sure if this related to PBC, Sjorgens or just getting older........

  • Quite often I have had tea and toast at silly hours throughout the night..

  • That's what I do as well, toast is delicious at hat time in the morning!!!

  • Yes! I felt the same for five of the most miserable years of my life after being diagnosed with PBC and starting taking Urso. I think I ended up going slightly mad from chronic insomnia (max 3 hours sleep a night). My consultant repeatedly told me it couldn't be the Urso (I knew it was!) as insomnia is not a known side-effect. Try a gluten free diet - this helped me, even though I tested negative for Coeliac's. I tried cutting out lots of different things separately and the wheat/gluten had the biggest impact.

  • 3.30 Tuesday night and we could have a tea party. its frustrating isn't it that's putting it mildly!!!

    i usually get to sleep around 5am.

    i am now on transplant list and was chatting to t. nurse and she said that the nocturnal bit is very common in pbcers.

    ive been pretty nocturnal for 18years but other's don't seem to have this.

    now i just give in and put telly on. best wishes cazer. x

  • should saynot all others have this.

  • Thanks everybody for all your comment. I know now I am not alone x

  • Sandie1. You are not alone. I know the feeling. Luckily, we have our better days. I also found I have to watch very carefully what I eat. It is not worth the suffering afterwards. Happy Easter for you

  • Sorry for your troubles! From the onset of my diagnosis (10 yrs ago) I go the opposite route… I get very, very tired. During the day around 1 o'clock I get so tired I have to fight taking a nap because I'm afraid I won't sleep at bedtime. If I slip and snooze, it seems I still fall right off to sleep at night. However, Six years ago, when I lost my son, I started taking two 5ml melatonin to help prevent me from WAKING during the night and my mind going wild and not being able to go BACK to sleep. They work very well for me!!! My doctor, and PBC information articles, say the tiredness and constantly wanting to sleep can, in later stages, become almost debilitating. Talk to your doctor and ask if you could take them because these pills could possibly help you with, at least, SOME sleep... who knows. Lack of sleep sure makes me a grump so.....*wishing you sweet dreams......😴

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