AIH

[Tracy3342]

Diagnosed 2 years ago. Constantly tired though still managing to work. Consultant very dismissive makes me feels that I'm exaggerating . Can sleep for up to 18 hours a day on days off ! Does anyone know if this is normal with this illness ?

[Bolly]

Fatigue is very very common with AIH. The medication doesn't cure the fatigue - are you on medication? There is little doctors can do to help with this symptom.

What you can do yourself is eat a healthy diet, at best one with no convenience foods, no sugar, low salt etc. Try and pace yourself with activity, listen to your body and rest when you can.

How damaged is your liver, do you know? Is there no damage, or is there fibrosis, or is there cirrhosis, do you know.

Do you have a tiring job or a busy lifestyle which makes resting difficult.

[Tracy3342]

Due second biopsy in Feb to decide if I can come off pred 5mgs also on azothioprine 50. Was told caught early so unsure of exact damage. Have a busy very stressful job but unfortunately a change would involve big financial loss so not an option at the moment. Have spent most of last 2 days sleeping. Thanks for reply.

[Jowen in reply to Tracy3342]

Hi Tracy3342, I know how you feel! My consultant look at my test results and then he tells me I am fine. I really wish I felt fine... I think he might feel there is not much he can do and my condition is not life threatning. But I have so little energy to do things, work takes everything I've got (and some more). I just wish he (and perhaps others) would understand, and I think I wish I could be better at figuring out how to live with fatigue etc. I also wish I had the energy to take better decisions regering diet and exercise. But as soon as I start thinking about all the healthy choices I could/should be making I am overwhelmed with the amount of energy it would take.

I am so tired on the Inside, everything I do has to be "forced" - nothing is automatic or easy. Do rest and do what you need, work slower and use less energy on work and more on what makes you you.

I have come to appreciate all the fun things that come my way about twice as much as before. IT is heavy not being able to take anything for granted, but I am hoping to learn something. Perhaps we can figure out how to live with this...

Hope you'll get to feel better soon!

J

[Tracy3342]

Thanks for replying. Everything is an effort these days. In a way its good to know that's its part of this illness and that I'm not going mad !! Its hard though for friends etc to understand because I don't look ill just feel drained most of the time.

[AyrshireK]

There is an amazing support group for AIH patients on Facebook if you use it, they are well supported by some of the top doctors in the UK who are doing research etc. into AIH and even have gatherings where these doctors come and give talks. On their page there is access to research materials including a good document covering fatigue in AIH.

The fatigue is my hubby's major/main symptom of his supposed AIH induced Cirrhosis. It is something he really struggles with since it is not just physical tiredness but draining mental fatigue too which causes him to have zero drive or interest in doing much at all. A complete change to the driven, committed, fanatical guy he was before.

You are not alone.

Facebook group is at :- facebook.com/groups/AIHorgUK/

Katie

[chynablue]

Have you heard of Spoon Theory? It helps when you try to explain fatigue to others.

butyoudontlooksick.com/arti...

[Bolly]

Tracy if you have had AIH for 2 years ( the meds you are on are minimal which is a good sign) I doubt the fatigue will reduce. This is the "new" you. Coming off steroids may help a little but you are on a pretty tiny dose. If you are not to burn out with exhaustion there may come a point where a lifestyle change needs to be looked at. There are always ways to live more frugally and sometimes ones health and enjoyment of life has to take priority over what lifestyle the money buys.

[guineapig1]

I also have AIH diagnosed 2 years ago and suffer with extreme fatigue,you are fortunate that you can work as I've not worked since diagnosis and have to rely on benefits.You must have more energy than you think if you can hold down a job. Have you thought about doing something easier as a good lifestyle is not everything,if you exhauasr yourself working you have no energy for yourself.

Obviously I don't know your situation but you sometimes have to think what's important to you.My AIH was advanced and had done a lot of damage but it made me realize what was important. Hope this helps,incidentally ,do you take lactulose? If not,how do you cope with your bowels,sorry to ask,thanks

[Tracy3342]

I know I'm lucky that I can still work but have had quite a bit of time off recently. I think the time has come for a bit of a career change and I'm fortunate enough that an opportunity has arisen. It was by pure chance and a good GP that I was diagnosed early and if fatigue is what I have to deal with then I know I've got off lightly. It's good to know that Im not alone as many people have never heard of this condition. I don't take lactulose but will be trying in the new year to eat more healthily !!!!

[Bolly in reply to Tracy3342]

Guineapig1 lactulose isn't commonly prescribed in liver damage until the patient has side effects such as hepatic encephalopathy that come with advanced liver disease or decompensated cirrhosis. Tracy has very little if any damage so isn't likely to be prescribed it by her doctor.

Tracy if you have an opportunity to move to a less tiring or stressful career, grab the chance. There are a few AIHers who don't suffer fatigue as a symptom, but not many, and if you have had it for 2 years it's not likely to go away.