I would just like to ask about Fatigue, how tiered do you feel?
I'm asking this because for nearly a year now, I am so tired, but I put it down to Woking full time, being a mum to a 3ry old and house work. However when I think about it, lots of mum's do this. I get up around 6.30am and by 6pm I am feeling so tired and most times feeling sick with it. I get my little girl to bed and an hr after I sometimes follow. There is a few occasion I last till 10-10.30.
What I want to ask is, is this down to PBC or with fatigue do u feel a lot more tiered?
Thank you in advance xx
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Fudger126
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I was 46 back in 2010 when I started with the itch. I was at the time very fatigued but I was at the time working in a full-time job covering Monday to Saturday. I had to step up in my job January 2010 due to my colleague going off sick for 6 months. I became the full-time covering manager having started the job as part-time at 21hrs per wk. I started working more like 50hrs per wk as due to it being a small (chain) shop I never seemed to have enough hours in the day so would stay later or go in earlier than shop opening to catch up, mainly paperwork. I manned the helm for 6 months and before I'd been full-time 3 months, the itch started. I would come home from work usually around 6.30p.m. when got in the house and I'd just sit on the sofa and fall asleep, evening meal went out the window for me.
I thought at the time the fatigue was just due to overworking as I never really got 2 days off together in the 6 months and I had worked 7 months before I got 10 days off on holiday. I had been having 3 months of blood tests and then a scan prior to the holiday my husband and I got in summer 2010 and whilst on holiday he said he wanted me to quit the job. Itching was still ongoing and I was getting increasingly more worried about it all as I had thought it was something and nothing.
My husband knew what the job entailed as it was a paid manager in a charity shop that are nationwide here in the UK. He had become one of my volunteers of a Saturday when I was covering manager (he worked Monday to Friday himself) so saw first hand exactly what a full day entailed.
After much debate and the itch and fatigue still persisting on our return from a 10 days Yorkshire holiday I handed in my notice.
Prior to the shop post I had worked in other jobs part-time (as I was a widow before I reached 30 and had to raise 2 children). I only thought back after finishing the shop post that I had frequently felt tired and exhausted for several years prior but I think for me the full-time working seemed to tip me over.
My children were grown up when I remarried in 2009 and I am fortunate that I receive a lifelong widows' pension from my first late husband's employer so I do have a small monthly income.
Fatigue can be bad in PBC and I remember exactly how I felt for most of 2010. I was diagnosed with PBC end of 2010 and due to quitting my job (I went back into the voluntary sector, still shop but where I had worked on and off over the years in-between paid employment), I did seem to rapidly lose the fatigue. I do sometimes feel I flag around 3p.m. but that is more than likely now due to the fact that I itch at night and if I can't sleep seem to have a knock-on effect the following day.
I do feel that when I do go back into paid employment part-time I am expecting to feel the strain once again so I really do sympathise there. I occasionally have my granddaughter who is almost 4 and I find myself rather tired after a few hours in her company as she is on the go constantly so I now cannot imagine a child living with me 24hrs a day.
With regards to housework, my motto is do what is important but leave what's not, do it when you get round to it. I spend part of my day doing housework and laundry but after evening meal, do the washing-up, occasionally it gets left on the draining board until later or the following morning and then that's my cut-off for the remainder of the day. I fall asleep myself most nights when the tv is put on at 9p.m. as I tend to rise between 6a.m. and 7a.m.
Sorry I cannot be of more help. I find PBC can be a bit of a grey area myself. I personally know I am fit to work (I have done mostly manual since after my son was born 1988) but I somehow think that it will have an effect on me in a notso good way now yet I'm far too fit to even consider some form of disability.
Thank you so much for your reply. I was just unsure if I do have fatigue due to PBC or just life. My little girl is very active and sometimes when I am so tired I feel sick and depressed. When I am home at weekends I sometimes have a little nap in the afternoon if my husband takes my daughter out for a few hours. I just don't want to feel so tired!
Hi I was working full time when I made a visit to doctors with severe fatigue blood tests were done and I was diagnosed with pbc & hypothyroidism while this was corrected the fatigue has never left me i then dropped my hours to part time but still the fatigue didn't leave me eventually I left my job and am now feeling much better I still tire easily and still need my nods but life is much better my advice is listen to your body rest when needed and don't be afraid to ask for help Fatigue is a biggie in pbc world . Hope you feel better soon xx
I am only 33, so it really bothers me being so tired all the time, one minute I feel ok and the next I just get really sleepy. I have had PBC for 9 years now, I was diagnosed by blood text with having joint pain. Not on any medication as yet.
I was interested in finding out back in 2010 the year I was diagnosed with itching that the LFTs on blood check and being abnormal can actually be either bone or liver related so I expect that is why your doctor did the blood test in the first place.
I had to leave work due to the fatigue but still find that I have days when I have to have naps. I usually find that by about 6.30pm I am ready to rest and have had to have my evening meal a lot earlier.
Have you tried a natural energy drink at all. I occasionally buy and excuse the terminology but there is one in supermarket (I found in Tesco) called 'Pussy'. It has milk thistle in it as one ingredient and it isn't loaded with the additives that the standard energy drinks have that I do not partake of at all.
I recently read that coffee has been found to be good for the liver but not drunk in excess. Said around 3 cups max per day is beneficial. I have a coffee after breakfast and also one later afternoon. I have standard and also decaff in the house.
Hello fudger 126 sorry to here you were diagnosed so young, having a young family makes it all the harder lucky for me all my children are grown up, I too have the joint pain and the muscle pain swelling of hands,fingers feet and ankles etc I do get treatment from docs when I'm in a flare usually prednisolone this works like magic unfortunately it is only a quick fix.xx
I've been on lots of painkillers and antyinflamitry tablets but none seem to work, they evan tried me on anti depression tablets but all that did was make my mouth really dry.
I have tried energy drinks as well, they do a little but not much.
The last year have been tough with one thing and another. I am back in March to see my consultant and ultra sound so I will tell him all.
Thanks for all your help, I love this site as there is always plenty of people to offer advice xx
Hi - You need to learn to pace yourself with the fatigue, which is a lot easier to say than do, I know. Unfortunately the tiredness can be a real problem with PBC. You mentioned joint pain with your PBC; after many years of painkillers and visits to rheumatology, I sought a second opinion which was the best thing I ever did. My new rheumatologist is prepared to treat me as having "PBC Arthritis," and has put me on Hydroxychloroquine. This drug is safe for the liver, and has removed the joint pain and so some extent made me less tired. I would liken it to being on steroids, in so much as I feel a lot better than I did before, rather than spending all day feeling like I was walking round with a ball and chain and falling asleep several times a day. I am quite energetic in the morning even if I fade in the afternoon.
It is hard to pace myself in my job, I am in sales working for Newspapers so I am always in meetings every day. Then as soon as I get home I play and sort my little girl out before bed. Many times after she is in bed I carry on working as there is to much to do in my job and not enough hours.
I will take on board what you are saying and try to slow down a little.
Hi, I worked in a high pressure environment and was very active. The fatigue and joint pain became so bad that I had to stop the martial art I was doing and eventually give up my job. Because my husband leaves for work at 4am I am awake then and am in my bed by 6pm at night. I have great energy in the morning, so do everything I need to then. I know I will begin to get wiped out by about 3pm and have learned to slow down then. Obviously this has an effect on any social life but I have never been one for 'going out' in the evenings. On the occassions when I stay up late when we have visitors etc I find I suffer quite badly for a couple of days. I have always found the body pains and fatigue to be most debilitating and worryingly I have recently been very itchy at night. I am going for an ultrasound next week because the pain in my liver area has been quite bad. Last time I had a scan they found I had enlarged lymph glands around my main bile duct and they want to see if they have grown which may explain the pain. My advice to you though is just listen to your body and where possible adjust your life accordingly. Works for me
Hi Fudger sorry to hear your feeling so low,as Iv said a million times Pbc sucks,it comes with all kinds of ailments and for me personally it is the most confusing illness Iv every suffered ie fatigue,itch,bone pain,dry eyes(just took me ten mins to clear away the crust)and of course a little depressing due to the anxiety of it.Im not depressed as such I'm just extremely down re the lack of sleep,even though I am exhausted beyond belief I can't get a full nights sleep no matter what.Yesterday I had a cup of tea after lunch and next thing I knew the head teacher at my work woke me up,luckily enough she knows my story so was concerned.
As everyone above says it's learning to cope,to adjust,to change life patterns and to listen to your own body and to be kind to yourself and look after yourself.My kids are so adjusted now they make their own dinner before I get in from work at 7 as they know I go in to shower then bed as I can't possibly function anymore.
Sorry everyone if I seem as if I am ranting,I don't mean to.
As usual I wish you all the best and hope you have a reasonable day x
I am not at that stage yet but that might be because I don't really stop till I get my little girl to bed at 8pm. Everyone say to slow down but in my job it is demanding and so is home life. I can't go part time or give up work as I'm only 33 and I need the wage.
This has been going on for a long time now but I have just got on with it, I think I am having a bad patch as it is really getting me down. My husband has been great though and can see I'm struggling a bit.
I just wanted to see how everyone els copes, if there is anything I could take of should do? I think by reading all your comments it's just get on with it, as I can't slow down as such.
Thank you to you all it means so much for your comments.
Hi Fudger just been reading your Q & A's. I was In a high pressure job, covering a large area. In & out of meetings and regularly working 16 hour days. I have always been the higher earner and paid most of the bills & mortgage so I understand what your saying re not being able to go P/T or give up work. I think I've had PBC for about 6 years although I was only diagnosed 2 years ago. If you can't cut back you really need to pace yourself or you will burn out. I hit a brick wall last year and have been off work since. I have now had to take ill health retirement. I understand that will not be an option for you but you really need to try not to overdo things at work. I finally realised that every bit of what little energy I had was being given to work and therefore my home life was suffering. My lovely husband was great but even he had to admit that he felt neglected (I was either working or too shattered to do anything) Unfortunately there is no easy answer but you need to manage the fatigue the best way you can. We have had to reevaluate our lifestyle because of the big drop in income but I know that won't be easy for you with a little one to take care of. I hope you find something that works for you. Take care x
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