Fatigue

[Polocat]

Hello to all

I was diagnosed with AIH this May and put on Bude. The side affects have been minimal in my case which I’ve been grateful for. However, I am still suffering with extreme fatigue. I am dark under my eyes, tired ALL of the time and lack energy. I spoke to my liver nurse who suggested bloods- these came back ‘ plumb normal’ - which I appreciate is great news regarding my liver.....but why do I feel so crappy???

I’ve now been unable to do my job since April because of this. Any suggestions??

[AyrshireK]

Hi Polocat, are you a member of the AIH Support Group on Facebook? They have an amazing set of 'files' that you can access that explore this side of AIH and many more. The group has over 1700 members of the site who are all either fellow AIH patients or loved ones with the condition. The group is advised and supported by some of the leading doctors and professors in the UK who are treating and researching the condition and it is from them that the files I mentioned are made up.

The group is well worth joining if you need support or somewhere to vent with people who know exactly where you are at.

Page is at:- facebook.com/groups/AIHorgUK/ It's a closed group so only you and those on the page see what is posted & it doesn't circulate round your wider friends list.

Fatigue is common in AIH and liver disease in general, in AIH it's a combination of the condition itself and sometimes the medicinal regime.

Katie

[Hidden]

Hi, I have had AIH for 10 years and fatigue is common, but.... they don't really understand why. If you look at the "Files" section of the Facebook page as Katie has suggested, you will find that they advise exercise to combat the fatigue, which seems counterintuitive, but it does help. I was encouraged to go back to work only 3 weeks after diagnosis (I was working part-time in a new job- eeek!) and I managed despite looking worse for wear and getting very little sleep. I had spent 2 of those 3 weeks in hospital. On top of that, in the space of 3 months two different people ran into my car, but.... I still managed. I felt the same as you, but I really would advocate trying to get back into work, even if it is part time to begin with, as I found this really pushed me forward in recovery. At the time, I thought I would not be able to manage it and that my consultant wasn't being very sympathetic, but I realise for me this was definitely the best approach.

If you can't manage that, I would also suggest finding a walking buddy and get them to call for you daily (if you can find someone willing) and make the effort to go somewhere. I had a bad flare (about 2 years ago) and not long afterwards, I went on holiday, in the UK, with my brother and his kids and I went out with them every day. Each day I was able to do more- I truly believe it helped me to recover quicker than if I had stayed at home and just rested.

In short, find some physical activity to do each day, even if it just pruning plants or sweeping the floors- anything. Set yourself a goal and don't worry if you don't fully achieve it, but find something that will get you moving and hopefully it will force your body out of this state. It works for me, although some days, I can do absolutely nothing, but it is rare to have 2 days together where I do nothing.

Hope that helps and all the best

[Polocat in reply to Hidden]

Thanks for your advice- i do yoga and tend the garden, but, if I’m honest, I could do more. I will try as it seems a lot of people have benefited from exercise.

My job is a completely different kettle of fish- very stressful, very long hours and very emotional ( I’m in child protection- court sector)

I can’t change my job, but I could manage some exercise!

[Hidden in reply to Polocat]

Can totally sympathise on the stressful job- used to teach secondary kids myself. But if I have encouraged you to do more exercise , then great. It does get easier over time and once your body has adjusted to the meds, you will find a new normal, which isn't feeling rubbish all the time. Build up gradually and listen to your body when it needs a rest🙄 good luck