Extreme treidness

[Charlierose]

Hi my namescharlie I suffer from extreme fatigue to point I will sleep all day get up for 5 10 mins then sleep all night just wondered if anyone else has everything that helps them any help or ideas would be most helpful as I don't wanna miss any more work

[CathieG]

That's a lot of sleep. I have fatigue and although I am not able to work any more, I never slept the amount that you do. Have you told the doctor about this? Do you think you could be suffering from depression and if you're sleeping so much you are not eating or drinking enough. I would advise you to go and talk to someone or call your doctor........today.

[Hidden]

Hello Charlierose.

Sounds like you are encountering fatigue badly and with working, not a good combination at all.

I started itching back in early 2010 when I was aged 45. I was working at the time as a full-time shop manager (small shop but nationwide) at the time. I had to cover for 6mths full-time due to my colleague going off sick. Due to not enough time off as lack of cover from other area shops I seemed to be working constantly and after itching I started getting home from work gone 6p.m. after a 12hr day on my feet and I'd flop on the sofa, drop off to sleep, not have the evening meal and then I could go to bed and normally would sleep for a certain period of time and itch and fidget when I wasn't. Mine persisted until later in the year when pre-diagnosis of PBC I made drastic changes with my husband's advice and quit my job. (I went back to the voluntary sector I'd slotted in-between part-time work over the years.)

For me after PBC diagnosis and quitting a demanding job I started to feel more alive. Fatigue is associated with PBC and depending on your work I think it can have a more detrimental effect on having PBC as fatigue is a sympton with PBC. For me fatigue vanished sometime during 2011 but by then I was established on taking urso and made lifestyle changes.

I do think if your fatigue persists as it is you need to speak to a doctor. I know back in 2010 for me falling asleep, not being able to wake, skipping meals where I started to lose weight isn't a good thing if it seems continually on-going.

I was fortunate that I have a husband who has a pretty decent job and it was his idea I quit the job I had before being diagnosed with PBC. I am also fortunate that I also have my own personal income from my former late husband that I receive for life.

It might just take a few small changes for you to manage fatigue as horrible as it is. I remember full well how it was back for me during 2010 with it. I find itching irritating as it makes me tired later in the day and though you didn't state, if you are a PBC itcher too then you will mroe than likely suffer it all the more.

[PBCFoundation PBC Foundation]

Good morning, CharlieRose,

I have sent you a direct message

Best Wishes

PBC Foundation

[1983cleopatra]

Dear Charlierose,I too have started to suffer badly with sleepiness . I'm constantly tired. I work as a dental nurse full time and sometimes I could just fall asleep.i was considering going part time but due to finance I can't at the moment. I get depress thinking if it all but snap myself out of it. It's a constant battle with the sleep problem . I don't know if there is help out there for PBC sufferes. I'm seeing my consultant in October but may see the doctor as it is getting worse . You take care

Elizabeth

[Flymccoll]

remember not everything is PBC related, so although we get fatigue with it, it is def worth getting your thyroid, anaemia, vit d and b12 levels checked. The b12 for me was very low and it has really helped with my fatigue - good luck

[NotorDJP]

+1 on what Flymccoll said. You need to get checked for other things. I found out that I had hashimotos thyroiditis as well as thyroid cancer a few months ago by accident, and I think much of my fatigue I attributed to PBC was this. Now, don't get me wrong, PBC can cause some serious fatigue, but you need to check other things too. Have you had a liver ultrasound to check for other things in the liver?

[Khara]

Hi Charlie,

I realised my fatigue was related to food, intolerances and very low vitamin D levels. I'm now keeping a food and symptom diary to see if there are any other links! I hope you fine something that helps because I know how much it can effect our lives x

[Khara in reply to Khara]

I just realised how old this post is, if you did find anything that helped please let me know!