Fatigue, lethargy?

I have PBC, diagnosed a month ago, but LFT's showing high for a lot longer. I've read on here about people suffering severe fatigue. Over the last year I've had times of ' I can't be bothered to do things' e.g. visiting my sister a which is a long drive which previously I wouldn't have thought twice about, but more worryingly I have 2 bouts of real tiredness, I've been out shopping and suddenly my legs just don't seem to want hold me up, and I just have to go home I'm so tired, yesterday for instance my husband was doing the grocery shopping and I had to go outside and find somewhere to sit and I was bad tempered and just wanted to rest and go home. I've put this lethargy and fatigue down to getting older (I'm 60 next year) but now I'm wondering if this is PBC related. Ive always been one for pushing myself and shaking off the tiredness. So basically can you explain how fatigue affects you? (I do have a full time job which I cope ok with as I can sit down when I want) but these last couple of episodes have been more intense than tiredness. Thanks for your help

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  • Hello lizagood1.

    I started itching early 2010 and at the time I was 45. I did have fatigue but I never thought much of it as I was working full-time in a managerial job at the time. Put it down to 'burning the candles at both ends'. I felt I had to push myself most of the time. I remember coming home from work after finishing later than I should have done and not even bothering to cook tea, just flopping down on the sofa and falling asleep.

    December 2010 I was diagnosed with PBC and by that time I was 46. I started taking the urso and at the same time my husband (of only 18 months by this time) decided what we would do. He convinced me I didn't need to work full-time (when we met up 2 years prior I worked part-time and managed supporting myself) so we went through several days of advantages, disadvantages, etc and I quit and went back into the voluntary sector I had fit between paid employment over the years.

    I also put some of my lack of energy at times down to the fact in the late 1980s I had 2 young children and my former husband got sick and then died in 1993 so I was left to raise our children on my own. Having no mother made me feel I was on my own but I managed. I think for me pushing myself was the norm over the years but I was younger.

    Since diagnosed with PBC I have found that since I hit the 50 mark I have started to slow down a bit more. The itching is a nightmare as urso altered it that it seems to leave me itch-free during the day but come 11p.m. every day it rears up and I have it all through the night until around 6a.m. It causes broken sleep and though I lost the fatigue during 2011 I do get tired some days in the afternoon.

    I think you have to start pacing yourself more if you are feeling fatigued. Fatigue and itching are the commonest symptons of PBC but also at the same time being given a diagnosis of PBC and knowing it is something that will more than likely be with us for life (unless a cure comes along to halt it completely) then it's natural to start getting down and that does start to weigh even heavier on top of feelings of fatigue and tiredness.

    My husband used to push me along and we were always out (he is ex-army and a few years younger than me) but he's noticed since 2010 that sometimes it's not the right thing to do. I know I feel it the day after I've been energetic and in my mind not a good idea to then start getting ready to go once again. We had 2 holidays this year in the UK (one Wales, other Cornwall), both weeks beautiful weather but this year we have noticed we haven't done what we used to do, fly about all week to different places and do a lot of walking.

    Only earlier today we were discussing that after the New Year we are going to get back into some good weekend planning and get out and about as we feel we've got stuck in a rut but unfortunately for me I find it's not good making plans for the following day as I find it better to take it as it comes if you haven't got somewhere to be. If I have a night where I hardly sleep I ultimately then fall asleep around 6a.m. and it can be gone 8a.m. when I wake up, it's later these days than it used to be but I just have to get one with it.

    I am there in knowing how you think before you are going to do something (ie drive to your sister's). As yet I've not been out and about (ie walking to/from town for groceries - it's all downhill for me to town, takes around 25mins but it's walking back loaded) and then felt my legs are going to buckle but I'm obviously younger (not far off 53) and I dont' know what I'll be like in another 7yrs time myself.

    As you're working full-time don't feel guilty about not doing things at times. If you can take a day out when you're not at work and don't do much. I used to feel guilty if I was in during the day but I don't now. I am on the go all the day as it is as when I sit down for a period of time I feel prickly which can be a prelude to the itch so foe me moving about resolves.

  • Hi lizagood1

    I find that the fatigue just washes over me and I need to sleep. I am now 65 and retired so am able to just stop if I need to. My husband shops and cooks the evening meal and I do the tidying and housework so chores are shared well almost😃. Like you in the past I have pushed through fatigue to my detriment and now stop when I need to but then being retired I can. I do find being grumpy is also a part of life now but some of that is because I was so active and like you a long drive would not have phased me but now I am constrained to cope and I think I resent it.

    Sometimes I want to just shut myself away and not be bothered with people but then along come the children and grandchildren to cheer me up.

    You may find cutting yours hours a bit might help or if you have a quiet place take a short sleep at lunchtime. In the past I have benefitted from many a power nap.😎

    Best wishes

  • Hi lizagood, chronic fatigue is a symptom of PBC. I believe it is caused because we are AMA positive and are unable to produce energy as someone without an autoimmune disease. Like you I may be fine but then I hit a wall and just have to stop and feel very emotional as well as inability to move. After a while of shut down I can get on and be ok again. Some days I find it really difficult to do anything. You just listen to your body and do what you can. I took early retirement from teaching because of the fatigue a couple of years ago - now 62, but unfortunately fall in that age group where I have to wait 5 years for my state pension but not considered ill enough for benefits so make do on a small teacher's pension. But things could be a lot worse as have supportive family. Must be difficult working full time. Anyway take care and enjoy Christmas. X

  • Very interesting question and already some good replies. Your description of how your feeling fits with how I started to feel with the fatigue. Mine started with that oh I can't be bothered feeling but I was working full time and thought it was just that I was getting older and tired easily. It was only when I noticed my friends energy levels hadn't waned I thought something was amiss and realised I was now suffering from the fatigue.

    I can get motivated but very soon I hit a brick wall and have to rest , if I try to push too hard I get very bad tempered and emotional. Sleep doesn't seem to help the most frustrating thing is, I retired last year at 62 not so much by choice but by knowing I was struggling with the fatigue and not having energy for anything else. I was hoping to be out and about enjoying some freedom, but seems once I stopped work the energy went as well.

    I had about a year before I realised my life was shrinking so to speak and I was spending every day at home to tired to do much. I love driving and distance never bothered me but I find I can't seem to do it. I get to where I'am going totally wiped out have a short rest and a drive back, not so much the enjoyment I expected.

    You do need to learn to pace yourself and try to stay positive ( good advice on paper, but I constantly over do it just to be normal and then spend days getting over it) and take time to do things you enjoy, let the chores wait.

  • I hit the ' brick wall' when I do I can't do anything but rest. I've had it explained as though I'm a re chargeable battery. You have a pot of energy that you use up. Then you have to rest to recharge the battery. Then you can get up again & do a bit more till the next time. I feel like an alkaline battery rather than a Duracell bunny. Xx

  • Hi Lisagood1

    Ask your GP or consultant to check your Vitamin D levels. My GP said over a year ago that I was deficient in Vit.D but didn't give me any medication, nor did I question it. However, my consultant for PBC did same test and gave me a very high dosage of Vit D for 10 weeks in the Summertime. Since then I take a lower dosage daily to maintain the Vit D levels. My life has changed because of taking this medication. My energy levels have increased, no aches or pains and generally have the good-feel factor. Hope this helps.

  • Fatigue seems to be common , I am always tired , I wake up tired , it is a struggle for much of the day and by the end of the day it's hard work getting showered and into my pyjamas .

    my husband and I used to walk our 3 dogs for miles every weekend, but now he walks them on his own , I love yoga and cooking but I can't manage that just now, I don't have the same lifestyle as before but to me it's all about managing the condition and I just rest as I need , I am hoping that I may have some improvement in the future. I work full time on my feet for 7.5 hrs and as long as I can manage to do that I don't worry much about anything else .

  • Due to restructuring at work 3 years ago when I was 61, I took the decision to retire early as I was finding everything too much for me and wasnt coping well with changes. I found the 'not coping' hard to deal with as I've always been the planner and 'coper' in the family, I felt like I was a failure. However, it was the best thing I could have done as I now pace myself and programme in downtime along with activities and if I've planned something and then don't feel able to do it I don't feel guilty. My husband is very understanding now and knows that if I say I'm having a bad day then I really am having a bad day and not just being lazy as I'm sure he thought when I was originally diagnosed. Taking away all the pressure helps immensely. As I also have an underactive thyroid as well as PBC, if my energy goes down and stays there I also look out for other signs that it might be my thyroid levels that need looking at and I go back to my GP for that to be checked. PBC affects all of us differently although we share common problems such as the fatigue so, as you are new on your PBC journey, be kind to yourself and take time to adjust to your 'life with PBC'. Make sure you get the info you need from the PBC Foundation and/or Liver North so you know what you are dealing with and ways of dealing with it - good luck!

  • Hello all

    I was told in May possible PBC? Still waiting for definite diagnosis. Have MRI booked Jan 2017.

    I just turned 59 in April. I was also getting tired. I would wake about 6 am and would go to bed about 10-11 at night not really remembering my head hitting the pillow. I was such a good sleeper and I got a lot done I was the energizer bunny. That's what people use to say. Well now I feel like the turtle BUT he did win the race slow and steady!!!

    Last summer I found myself pushing myself. Started drinking red bull which helped and expresso coffee. Man could I move again. But then later that fall noticed I had to drink more red bull. Started taking B12 as I heard that helped

    My husband finally said u are just tired. Try to rest! Right. Energizer bunnies don't rest! Well they do now I realize.

    I am not on of the meds people seem to take

    I self medicate with medical cannabis and has been a life saver so far it was prescribed for neck pain and spasmism that I have had for years Dr prescribed Tylenol 4 x's a day for 2 yrs when I stopped it as a nurse said it wasn't good for me

    I have had my legs feel weak and at times they feel like cement block when walking Or I start out ok and just about 20 feet into walk it's like a switch is flicked and energy just drains out of me

    It's hard I do find my feelings of being very angry lately or just pissed off and trying my best not to let it out on my husband He has been amazing we have been married 43 yrs January he just had a heart attack a month ago

    I am so thankful for everyone out there who truly understand what we are all going through cause u are going thru it as well just breath. I am getting into listening to music and audios books is great TV just seems to bore me these days I do a lot of crafts as well when I feel like it That is something I have noticed I have to really push myself to get out into my store to make things And to do paperwork etc is taking me forever. I am just waiting u til I feel the urge so I can get it done. That's what I have been doing now. Trying to change my thinking and they way I do things. And the biggest is to try to not feel guilty about sitting. Still working on afternoon naps. My husband is trying to teach me. Lol.

  • I forgot to say as someone else mentioned vitamin D , I was prescribed vit D after a blood test a year before being diagnosed pbc , but sadly didn't find any improvement in my energy levels

  • Hi lizagood1. I was diagnosed with PBC earlier this year after a high AMA was picked up on a routine blood test. I've been very tired for several years with slightly abnormal liver results but I thought the tiredness was due to running around after 3 kids, working nearly full-time, studying, etc etc, and the liver irregularities were never investigated.

    Now I'm at the stage where I sleep badly most nights and feel so tired when I get up that I often wonder how I'll get through the day. It's a general heaviness and weariness, especially in my legs. If I do anything that requires extra effort like climbing stairs I get a sudden so-tired-I'm about-to-fall-over feeling that passes in a moment or two. I'm ready for bed by about 7.30pm but try to stay up until at least 8.30.

    I'm only 51 and previously fit and active and, like many people who replied, I resent the restrictions the tiredness imposes. I tend to push on with work and family commitments regardless but miss out on social events as often I just can't muster the energy to go out and be sociable, especially in the evenings when I just want to go to bed.

    I suspect we manage better if we slow down and pace ourselves more but there are so many things to do and so little time! You may just need to prioritise the things that have to be done and be selective about when you draw on your energy bank for the other activities. I wish you all the best as you come to terms with your diagnosis and hope the support from people on this forum is helpful to you.

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