fatigue

[Christinarose]

Hi I have PBC (primary biliary cholangitis). I work full time and i'm really struggling with fatigue. I could literally fall asleep at my desk sometimes. I cannot afford to reduce my hours. Has anyone got any advice on what I can do please? Thanks in advance

[Hidden]

Fatigue can be really debilitating.

I am sure our forum members will be along to share their experiences.

I assume you are under the care of a hepatology team - It may be worth contacting them or your GP - fatigue can be a symptom in PBC , however, there may be other causes and it is worthwhile ruling them out.

They will also be able to check that your medication is optimised.

I have included the link to our information

britishlivertrust.org.uk/in...

You can also call our nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm

Trust9

[Christinarose in reply to Hidden]

That's really helpful. Thank you x

[ezz2012]

Hi darling I also have progressive slcerosing cholongitis I think ours are the same disease of the bile ducts I have been so tired lately I’ve been asleep most of today

[Christinarose in reply to ezz2012]

Bless you. It suddenly comes over me in a wave.

[ezz2012 in reply to Christinarose]

I can sometimes feel as if I have no illness’s at all then at times I know I have many im hoping this passes soon I’m feeling quite unwell I hope your fatigue also passes very soon

[Christinarose in reply to ezz2012]

Aw I'm sorry to hear you are feeling unwell. Are you on medication?

[MarcelAurel]

You could maybe try adhd medication? These type of medicines are stimulants and maybe it will help.

[Dotyy in reply to MarcelAurel]

Hi MarcelAurel, I too have PBC, and fatigue is as many pbc sufferers know the most debilitating of all pbc s symptoms. I am curious you recommending stimulants. Many Adhd medications contain amphetamine as I’m sure your aware. This can be lethal for someone with an already weak liver. I believe Modafonil is sometimes prescribed for fatigue in pbc but it isn’t recommended by many consultants. This is a none amphetamine based medication. I suppose I’m saying this should really be thought about carefully and will differ between patients and how far their illness has progressed. All the best.

[MarcelAurel in reply to Dotyy]

I didn't know amphetamines are that toxic for the liver, opiates are worse.I've heard people with cirosis taking Ritalin.

You guys know better I guess.

[An1063]

Think about your situation and any work policies that may help. Long term sick pay for example? After discussion my company paid me off this year to leave which made it worthwhile while I got myself sorted. Hopefully something will give you some time.

[Christinarose in reply to An1063]

My boss is going to refer me to occupational health, so will see what they say. Thank you x

[An1063]

That’s good news at least and hopefully will go well. I too had an OH assessment provided by the company and although they were very favourably supportive my company didn’t take their advice. Hope it goes ok.

I had to be reminded there are always options despite how impossible they might seem.

Take care

[Christinarose in reply to An1063]

Thanks for that, I'm hoping OH can help in some way. Take care x

[LucyH16]

I know it sounds ridiculous, but I find the more exercise I do, the fatigue isn’t as bad. Like you I used to really struggle, the consultant said it’s just part of it and there is nothing that can help. Good luck 😊

[Christinarose in reply to LucyH16]

That makes sense actually. I will exercise more, even though its such an effort!! Thanks for the advice. Take care x