Tired: Well at worst soon as it hits around... - PBC Foundation

PBC Foundation

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Tired

Purdy2017
Purdy2017

Well at worst soon as it hits around 1,30 14,00 struggling to keep my eyes opened it's horrible does anyone else struggle with this time of day ??

25 Replies

Yes I start getting tired around 12 ish and try to fight it, but in the end I give in and have to sleep.

On a bad day I can start to feel drained at around midday, it’s the worst feeling isn’t it! I just feel like all the energy and strength has drained out of my legs and arms and that if I don’t have a lie down I will fall down instead. After a couple of hours lying down I start to feel a bit better again. Those days happen a few times a month at the moment, but it’s just the suddenness of it, I have 2 children 10yrs and 2 yrs and work from home at the moment so it really isn’t ideal. On better days I just feel like I’m not 100%, and could have a nap at any time. It’s a horrible thing to have.

Hi yes thank you for your reply yes it is horrible I fill like my brain is also so lazy to it just wonts to switch of

Before I was diagnosed and started URSO that was always "my time of day" to nod off. I was in an office on my own and I remember crashing one afternoon but my boss came in, I came to with a start and pretended I was looking for something under the desk! Fortunately for me this phase passed however some time later the itch has come and although medicated sometimes it can be very lowering.

Thankyou for your reply yes I wish I could just pull the plug no matter how much sleep you have it does not seem to matter its horrible

For me it's usually around 3ish... Caffeine, lots of caffeine

Yes, and I just take a nap in the afternoon. I cannot stay awake an entire day regardless of the amount of caffeine I use.

I do not work outside the home but also I can’t see how I could.... I usually have to lay down around noon to two and sometimes around 6pm. I’m in early cirrhosis and I think it’s just part of the disease.

Purdy2017
Purdy2017 in reply to IAmTheGlue

Yes I agree it doesn't matter how you try and stop it its not happening trying to go against it is not a good idea keep safe thankyou for your reply

Hi

Yea and when it hit I just have to lie down. I'm newly diagnosed. Going to see liver specialist on Monday.

I also have hypothyroidism, dry eyes, chronic sinusitis and itch.

Sorry to moan but it has helped to read these and see I'm not alone

😀

Purdy2017
Purdy2017 in reply to Nellies47

Sorry to hear that yes that's all you can do apart from when your at work

Nellies47
Nellies47 in reply to Purdy2017

Yes and at work I drink too much coffee which still doesn't take the edge of the tiredness. Does anyone else find they eat too much when fatigued. I'm gaining weight because I eat to stay awake.

Hi there, my worst symptom is exhaustion. I was diagnosed with PBC at age 40 , I’m now 52 . My fatigue is becoming so much worse. I’m really struggling and don’t know if I can keep working for much longer . It’s so difficult. Try and rest when you can.

Best wishes to you

Nellies47
Nellies47 in reply to fudge13

Thanks. Yes understood rr work. I'm working a 4 day week. I'm a nurse and find it hard.Saw the liver specialist today for 1st time.

Just wonder is it usual to not be started on meds. Told I def have PBC , have positive AMA etc and my GGT and ALT are high but that my ALP is normal so I don't need meds.

It's great if I don't need meds but I'm worried that I should to slow the progress.

Thank you

Purdy2017
Purdy2017 in reply to Nellies47

Hi yes you need to go on meds to slow the progression down I've never heard of that before I would question it kind regards

Nellies47
Nellies47 in reply to Purdy2017

Hi.Thanks for the reply. Should I look for second opinion.

It's so new to me I'm lost.

It doesn't hurt to get a second opinion. Believe urso can help normalized your elevated liver enzymes.

Purdy2017
Purdy2017 in reply to Nellies47

Yes defanatly I would

Nellies47
Nellies47 in reply to Purdy2017

Thanks so much. I have booked ph consultant with GP re same.Anyone here on this site from Ireland and can recommend a good liver specialist.

Thanks everyone ☺

Purdy2017
Purdy2017 in reply to Nellies47

Hope it all works out for you and you get something sorted best wishes

Nellies47
Nellies47 in reply to Purdy2017

Thank you. You too

fudge13
fudge13 in reply to Nellies47

Hi there, I think you should definitely be in medication. Why don’t you contact the PBC Foundation for advice, they’re great at giving up to date information. Good luck

Nellies47
Nellies47 in reply to fudge13

Hi Thanks for reply. I contacted my gp. She also feels I should be on medication. She has referred me to a different liver specialist.

So will see. No harm to have second option.

Nelly

Purdy2017
Purdy2017 in reply to Nellies47

I'm really pleased I'm glad you are being referred and hopefully get sorted x

Nellies47
Nellies47 in reply to Purdy2017

Yes thanks.

Purdy2017
Purdy2017 in reply to fudge13

Hi I'm sorry to hear your struggling yes it's horrible I dont no how long I will be carrying on with work I work four days as a support worker and struggle kind regards

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