Chronic fatigue!!

[Lisacj]

Diagnosed at Xmas, and other than a small itch and fatigue not too bad. Now though the fatigue is over whelming,I go to work and sleep,I cant concentrate, cant go out,actually am doing absolutely nothing and am really finding my quality of life is nil. Any advise, suggestions, help??

[Hidden]

If you add pain in the joints to that lot you are also describing me to a "t", I don't go out to work though, I just sit here feeling like crying or lie on the bed, sometimes it an effort to stand up. I was putting in down to the weather at the moment so it will be interesting to see what others say, This is the worst I have felt for a long time.

XXX Linda

[Lisacj in reply to Hidden]

Maybe it is down to the weather, mentally thinking that may help.. nothing else seems too hay Linda. We are not alone, thats good,thanks for your reply.

[Anne123_45 in reply to Lisacj]

I feel exactly the same... sore joints and totally exhausted.. Like sometimes even too tired to hold a conversation.. I also get random spouts of dizziness. Is there drugs that can help...??

[Hidden in reply to Anne123_45]

sometimes I realise I am talking a load of utter garbled rubbish, is that the sort of thing you mean.

[Anne123_45 in reply to Hidden]

Like even getting the energy to converse and then forgetting what I was saying.. And it's not age..I'm 34 lol

[littlemo]

Hi there do no harm to go to dr the fatigue being worse could be down to maybe you being low in Iron or your thyroid being underactive. I actually find that exercise helps with the fatigue I know sometimes its hard to motivate yourself when you feeel like crap but it does help. Other times eg after work I find a power nap of about 40 mins helps me keep going for rest of day. best of luck.

[Hidden]

Hello lisacj.

Well I started like yourself back early 2010, fatigue bad (but I was working more hours than I should have been in a full-time job at the time) and it wsa only the itching that started at the time that made me take a trip to the GP.

Took a further 8mths to get a diagnose (from the AMA test) of PBC and Dec 2010 I started taking urso. That is the only medication I have been on (so far).

I have to say that you do not start to feel a lot better, if you are going to be so, for some time following. Took me about a year after diagnose to actually lose the fatigue but I did adopt lifestyle changes if at all possible, one was my husband of just over a year at PBC diagnosis suggested that I quit a job that was doing me absolutely no good at all. We were on our first real holiday together and we spent a lot of the time talking about his work, my work (both too demanding jobs at the time (his still is)) and also what could be the outcome of how I was feeling at the time as I still had a few months to diagnosis then.

I went back to work with a definite decision and handed in my month's notice to quit and no sooner had I finished I got begged to go back into voluntary work I had left for a full-time job so I returned there.

The fatigue did disappear and almost 3yrs on from diagnose I no longer feel that fatigue altho' I do start to flag and feel tired around 3p.m. daily due to more often than not struggling during the night to sleep due to the itch as I only tend to itch at night.

Due to the itch and in the beginning I did feel it sort of 24hrs a day I find that for me I tend to be on the move nearly all day. I think I associate relaxing with itching as can guarantee once I sit down at night to watch tv from 9p.m., I struggle to stop fidgeting due to the itch rearing up.

As soon as I had my first abnormal LFT in 2010 I didn't have any alcohol anymore. Not bothered me due to the fact I was never much of a drinker prior to 2010 anyway. I haven't taken anything like paracetamol (or aspirin) either in all that time as I think if you can manage without why take something that is actually a toxin to the liver even if it is a drug. I find the simpler foods are far better but I find a lot of that easy as that is what I used to eat prior to 2010 anyway. I try to steet clear of additives if I know they are pretty nasty, ie aspartame or MSG. Never being partial to fizzy pop/soda I don't drink that either.

It can be true what littlemo h as stated, even when you feel like you want to not get moving, drag yourself up and take a short walk if you can, it really can add a great boost. If you can by all means take that cat nap which I envy a lot of you on this site for as I know if I was to drop off in the daytime I just would not sleep at night and for me, with the itch it is something I do not want to risk doing. But there are other ways to relax, sit up and get a magazine out and do a crossword puzzle for eg. I'm not a crossword fan, I have quite a few penfriends so I am often kept busy there and for me whilst thinking about something and doing, you then take your mind off PBC and also at times if you feel prickly, the itch.

Hopefully with more time you will start to feel much better. Best Wishes.

[spoul]

Hi there I have had Pbc for 15 yrs diagnosed at age 39.....for the first few years I could change my lifestyle accordingly this included asking work to make allowances for me as Pbc falls under the dda act. However it soon became apparent that whatever I was offered wasn't enough to keep the debilitating fatigue at bay. So 3 years ago I was awarded ill health retirement in the nhs. I haven't looked back, my quality of life is much improved and I wish I'd done it earlier! Take care don't push yourself because you only feel worse in the long run x

[Lisacj]

Thanks to all of you lovely people for the advise, help, support and care you have shown xxxxx spoul, peridot, lindaclark, littlemo, Jpmac, big and best wishes to us all xxx

[Lynne-k-g]

Hi, unfortunately this is a common side effect of PBC, I found when I had good days I'd try and do as much as I could incase I'd have a bad day the following day. This was making me have more bad days than good, I take it slow now and have resigned myself that I just can't do as much as I've always done before, I'm no longer working so don't have that to contend with. When I was at the specialists last month, he had another consultant was with him who is a thyroid specialist, they both told me if you have a history of thyroid problems and or galll bladder problems you have a lot higher chance of developing liver problems with PBC being the main one. I had gall stones 21 years ago and had my gall bladder removed, and I was diagnosed with an under active thyroid 16 years ago, I was only diagnosed with PBC last October. So basicly what I'm trying to get at is just try and pace yourself and rest if your feeling tired (a nap in the afternoon is good - if possible) and ask your GP if they'd double check your thyroid levels. ( if you have an under active thyroid you are then entitled to a medical exemption for prescriptions, but not if its over active).

I hope this has been of some help even though I seem to have rambled on a bit.

Take care xxx