British Liver Trust
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Hurting body ☹️

Hi, I was diagnosed with cirrhosis of the liver this January and physically declined very rapidly. Lifelong alcoholic but appeared very fit and healthy. Told I was dying. Had regular abdominal drains and huge amounts of medication, my last drain was 7th April and it was 7 ltrs but miraculously after that one the fluid didn't come back. My liver has returned to normal function although it's still damaged, I couldn't believe it! Although I am so grateful to be alive I hurt every day, some days I am too weak to do anything. Does anyone know how long the painful joints and fatigue lasts please? Also have you had problems with your feet? Mine have been numb and painful through it all. Would love to hear x

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Exactly same hurting from inside and out he'd to toe joints bones muscle the lot to

Tired to do a thing good news about you liver but I no it's awful I have arthritis

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Hi there, i was diagnosed 10 yrs ago with cirrhosis due to alcohol, given 6 months to live.. was in hospital 6 weeks. Had 3 drains done and placed on low sodium diet and fortisip.

Not had any further drains since , my fibroscan is quite high at 27,

My LFT have been good now since 2014, but it does not stop me having constant fatigue, or pain in the tummy ..im on lactulose as i have mild encephalopathy but as to your question, no one knows when or even any of the symptoms will subside,.

Not even a hepatologist can say for certain how anyone is going to be from one minute to the next im afraid...

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I'm not really sure why your liver was able to regenerate at the cirrhosis level. But I'm glad to hear your feeling much better. I really don't know what can be causing pain in your joints. May I ask what medication your taking please? Fatigue is very common with liver conditions, but numbness in the feet could be a circulatory condition. None of us in this room are medically qualified so it would be wrong to say anything really without knowing all the facts. I would go up to A&E just to be on the safe side.

Good Luck Elizableu and please keep us posted.

Richard

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Hi, glad to hear you're on the mend. Unpleasant to go through it all nonetheless. I still have chronic fatigue and pain in my joints/limbs after 4 months of not drinking. I was diagnosed with cirrhosis last year. Unsure about the pain in your feet but heard about numbness and pins and needles. Probably all related. Everyone's different of course but I get the impression it takes a good while to feel better. Just stay off the drink and really look after yourself. Sleep when you need to, I take naps a lot. Maybe ask your doctor with help for the symptoms. You'll get there, all the best x

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Hi, yes the feet thing i understand all too well! I was sdmitted and diagnosed with cirrhosis in October. My liver was decompensated snd it was touch & go but after a month in hospital i was eell enough to come home and my liver is now compensating thankfully, but my last ultrasound shows i will most likely need a transplant at some point.

It was actually my pins & needles & numbness in my feet that started last summer. I went docs but they brushed it off but since diagnosis they confirmed it as neuropathy. The alcohol has damaged the nerves. They said the thiamine should help but i think it's too late now. Very annoying and they often feel buzzing and burning at night. On a positive if yours is just early days then the abstinence with vitamins may still rectify the nerve damage. Just be pleased it's not the hands too - i am!

Charlotte x

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Glad to hear you turned things around Charlotte, yes the feet thing.. i had exactky the same, i had tingling in my left hand and left foot, also a numb feeling which for some reason was worse on waking..i had to have neurological tests where they told me i had neuropathy. 🙁. Im taking thiamine and b12, they could have put me on gabapentin but i refused due to my liver, i have ok days and bad days

No , it wont improve for me unfortunately .but the hands are the worse ! Affects me worse in winter.

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Oh i feel for you. They kept asking about my hands but thankfully they're ok...though very stiff & painful especially in the morning moving my fingers waking up. Not sure if thats related or not - if it is it's got my knees in the morning too! Stiff going downstairs and I'm only 40 😂.

Charlotte x

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Well thats good news! Having it in your hands is the worse i think, don't have it in.my.knees though lol.

Mind you i do have osteopenia in my hip and two prolapsed discs middle to lower back.. im falling apart at the seams. 🤭😂..im.older than you ..your still a spring chicken hehe x

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No one can explain my joint and muscle pain + stiffness, it started up about six weeks after I stopped drinking, been abstinent for over a year now. LFTs are all in normal range, I have cirrhosis. Also suffer from awful circulation, I don't get any explanations from GP or Consultant.

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I read somewhere that potassium is supposed to help with muscle cramps and aches perhaps you could discuss it with your doctor?

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My other half has just been to see his consultant today - he's 7 months post-diagnosis of cirrhosis. She was really pleased with his progress, saying his liver is now compensated, but his aching body was the one thing he asked her about. She said it was perfectly normal and not to expect too much too soon.

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Hi Elizableu,

As many have said each person is different and not everyone will have the same issues. My husbnd has issues with his feet and one doctor recommended Alpha-Lipoic Acid 600 mg per day to see if that might help and it seems to - So you could ask your doctor or medical person if this might be of help to you. Also, it has taken quite a while for him to get back to the point that he seems to have gained muscle back. For that sometimes it just takes getting up and moving some each day - not to the point of pain or discomfort.

Your doctor should have some suggestions for your particular case or be able to suggest where or who to talk to.

Best wishes,

Mary

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Hello Elizableu, Congratulations on your blood tests returning to normal and no more drains but there must be something that is causing your fatigue. Might not be the liver at all. I'm not a big fan of blood test results, I don't believe they tell the whole story. Have you had a test for vitamin B? I need injections of vitamin B every month and that's really not enough. I can tell the difference immediately after I have one. lots of pep. Well, at least more than normal. If your bloods for B12 are high it means you are not processing your B vitamin, so having a low number is a good thing. Try those under the tongue absorbing vitamin B12 for awhile. It can't hurt. Hope it works for you.

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I have been taking b12 extra strong compound 4 yrs now and thiamine, i still get tired. I eat healthy but can't exercise as much due to osteopenia in right hip with onset of osteoarthritis. O too ache but put it down to age lol, not really sure if or how long are we supposed to take these vitamins for ? Im compensated cirrhosis.. .🤔

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Hey Millie, I have no idea how long we take the vitamins, forever I'm guessing. Yes, I'm tired all the time too despite the B12. Also have nothing left of my pancreas so this is a double whammy on tired for me. Aghh, I feel like I"m 100yrs old most day.

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Your probably rught Angelann69. Or I would have thought my hepatologist would have mentioned it. Oh bless you.. tiredness really does interrupt us daily, even if I'm planning to go somewhere I have to have a nap b4 hand or i could not last the evening. X

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I'm not really sure but I think the painful joints and fatigue could be a symptom of liver cirrhosis. Are you eating a proper diet? I think you should formulate a proper diet plan depending on the conditions that are affecting you. Everyone's case is unique so if a particular diet works for somebody doesn't mean that it should work for you. I think asking your doctor about what foods to eat could be beneficial. I THINK you should try to be active. I know you are suffering from fatigue but I remember reading on the net that it's a dangerous cycle. People are too tired to move around and so they lay in bed which causes muscle wastage and fatigue which makes it harder to move around. Being active can help your muscles. Maybe you could try strength training for OLDER people. I don't know what particular activity you should do that could help you and what activities you should avoid which might prove to be harmful.

Also sometimes, I really get confused about the treatments that doctors recommend. Like the doctor recommended my mother to lose weight. But now she looks like an old person. Her muscles look wasted. I think the doctor meant that my mom should lose fat but retain muscle. I don't know. These things really confuse me.

I had come across a website called painscience.com. I think it's really interesting. painscience.com/ I don't know if it's a reliable website. Just that I found it interesting and I have bookmarked it. A different perspective about pain.

If you have kneepain, then there's an invention called Actipatch that they have reviewed. It won't solve your problem but it may relieve your pain by making you feel good. I'm not guaranteeing it. On the product's Amazon website, there are bad reviews as well as good ones. I don't know if that thing really works.

I really hope you get better.

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