PBS chronic Fatique

[stevie1]

I have PBC. One of the symtoms is Chronic Fatigut but on occasions the fatigue can be more severe and I feel exhausted for long periods. Does anyone else have these bouts of exhaustion?

[DCMurphy]

Absolutely! There are some days I feel that if I don’t stop and lie down, I will fall flat onto my face. In fact, it the worst symptom I deal with.

[June9961]

Most definitely! This has to be one of the worst symptoms for me. There are days I just want to stay in bed but determination won't allow me, so I feel dreadful all day, basically dragging my body around. I am in bed by 6.30 each night and have no social life what so ever. When I am really bad I don't even remember my own name and the name of every day objects. I also get quite 'ratty'. According to my consultant there is no cure for severe fatigue as yet.

[kimphoebe in reply to June9961]

Hi June

Fatigue is my worst problem its changed my life completely. Some days get so tired can even string a sentence together. People just think you are being lazy and don't understand.

[June9961 in reply to kimphoebe]

I know and that can be so frustrating. Hang in there though. On here we all feel your pain. 😊

[kimphoebe in reply to June9961]

Thanks June

We can all stick together and give some support at least. Xx

[jane1964]

Definitely for me the fatigue was the first symptom I have times when it worsens and occasional better days.Its very frustrating but I have found I can't fight it if I do it just makes it worse so I try to do things at periods of the day when I have most energy and if I have to have a sleep I do.

[cazer]

hi stevie, think as you read more you will see along with the itch, the fatigue is the most debilitating part of pbc... pacing is really the only way to try and help yourself.

if you know you are going somewhere then rest before hand if possible.

do the things that are important to you and ditch the non essential...

best wishes cazer

[liver-bird]

Oh yes, I can stagger with exhaustion. Nothing to do but rest and pace yourself. So do a bit then rest a bit - that's how I deal with it. You get used to it and it becomes the norm. ☺☺

[Hidden]

I too suffer severely with fatigue, I was diagnosed with PBC in 2009 the worst thing for me was the fatigue, I had to adjust my lifestyle to enable me to cope. I do all things in moderation, i.e cleaning a little each day only and sometimes not at all! I go to bed early each night.

[uandisharing]

I actually had to tell relatives to stop making fun of me because I go to bed at 7:30. If I have an event, I take a nap. Sometimes it takes me three days to get over the event I went to. I feel like I'm sleeping my life away. All I can say, is do what you need to do.

Good Luck!!

[stevie1 in reply to uandisharing]

You just described my life.

[uandisharing in reply to stevie1]

You made me tear up. I'm sorry. It can be depressing.

Look at the bright side. There's a lot of other horrible diseases out there. I can deal with being exhausted. If people don't understand that's their problem not mine.

[Lucky4]

All of the replies sound like me. If I see friends, it's for lunch or a short walk/coffee in the morning or early afternoon. The fatigue (which can be debilitating at any stage) essentially means what everyone else has described: just doing what you can and making decisions on how to use whatever energy you have that day.

I tried Modafinil, which is a prescription medication used for sleepiness due to numerous causes. However, I got severe side effects from it (I'm sensitive to medication side effects, especially medications that are similar). I have heard that some people (e.g. people with MS) have found it helpful so perhaps that's something you can read up about.

All best with it. The challenge can be to have a meaningful life and being able to do some the things that bring you some joy and happiness.