decompensated cirrhosis - aching

[Rshc]

Partner diagnosed 22.12.22 decompensated alcohol related cirrhosis. Stopped drinking then. Bloods slowly improving until a bit of a crisis 3 weeks ago when he was suffering from awful edema (he previously couldn't take water tablets due to low sodium). He is back home and bloods are now looking better again, bilirubin down to the lowest its been, platelets climbing back up, water tablets seem to be starting to work and sodium now within normal range so they have upped them again. My question is he has lost a lot of muscle mass and is aching everywhere. I only have to brush against his leg or arm and it causes him so much pain. Is this nutrition related? Muscle wasting related? Water tablet related? What can I do other than continue with the healthy balanced high protein diet/lots of fluids I have been giving him. He knows he should be restarting exercise but is really struggling at the moment.

Thanks

[RustyTractor]

Hi Rsch my husband has similar pain and the only advice he has had has been to try to exercise, which he can't/won't, to prevent more muscle wastage, but very importantly to keep up calorie content and protein. He has a dietitian appointment but its some way off. I've tried to get a private one but so far not managed to get one to return my calls.

Head against a brick wall time I'm afraid...

[BritishLiverTrust6 Moderator British Liver Trust]

Hi Rshc,If you are concerned, have a chat with our nurse led helpline who can offer advice on your specific situation. Call 0800 652 7330 between 10am and 3pm Monday to Friday (excluding bank holidays) or email [e-mail] (emails can be sent at any time and are answered during helpline hours).

[Cat-B]

Hi I had extreme muscle loss, I started with Zimmer frame and then I got a walker for going outside, the physio was brilliant and set low targets ( so I never got disappointed) I gradually set my own targets ( like walker to the next lamppost or road sign) then I tried a small shop( I didn’t buy anything lol) Everyone was so excited when I finally walked up and every isle in Sainsbury’s. To build muscle you need lots of protein and calories. Sounds like you’re doing all the right things. Remember it’s a slow and steady process. Good luck

[Aotea2012]

I had decompensated cirrhosis, now fortunately well compensated. I had a lot of muscle wastage and ached like mad. You are doing all the right things. High protein, high calorie diet. I drank milk like it had gone out of fashion...strangely craved it. My appetite wasn’t good at the start so it was one of the few things I could tolerate. Exercise was the other thing...I set little targets about walking in the village, which given I couldn’t walk at first, were quite small targets to start. Slowly I built up...both muscle mass and exercise. My aching moved from muscle wastage aching to exercise aching but then went completely. I run a couple of miles a day now. My consultant said to me that ‘it’s taken a while to do this to your liver so it’s going to take a while for it to forgive you!’ It has though. So he needs to keep doing what he’s doing. Most importantly leave alcohol alone.

[KulG20]

HiI’m three years post life threatening bleed

I’ve noticed there are up and down cycles and have started to keep a diary

At the moment the skin on my legs is on fire not so three months ago

The livers inflammation seems to vary month on month and can be unpredictable

I’ve also had muscle loss but sometimes don’t have to nervy for exercises

I would say take each day ad it comes and don’t beat yourself up

A day out of bed is a good day!

[Positive001]

Exercise is the key to preventing muscle wastage and once he tries to get mobile again, it will become easier and more pleasurable. As others have said, set small walking targets to start with and increase them. Also use cans of beans as hand weights and do some bicep curls etc to build his arm strength again and invest in a set of small light to medium weight dumbells to progress with. Excercise is also a great tonic to lift the mood. 🏋️‍♂️🚴‍♂️🏊‍♀️🤸‍♂️🧘‍♂️💪😀👍

[Male47]

Can I ask his blood levels, alt, bilirubin, albumin, platelets etc. I am in the same boat, cirrhosis, vastly under weight and malnutrition. I'm now eating high protein low salt. I ache inside from time to time n seem to pull muscles easily but I don't have pain to the touch