I've researched cirrhosis but just wondered if anyone going through or had cirrhosis of the liver also suffered from painful joints, never had the pain before but quite painful most days , or could this be because I'm older (46)😊
Joint pain : I've researched cirrhosis... - British Liver Trust
Joint pain
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janerayne
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47 Replies
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I get it with autoimmune hepatitis. It's a common AIH symptom. I never had it with the chronic viral hep. What 'type' of hepatitis is your diagnosis, sorry not looked to see if you have told us that elsewhere.
No hepatitis, they don't know what is causing mine , loads of tests but no joy😊
Same as me jayne. Have they told you how much damage is done? My consultant said they had to wait till it wasn't iinflamed to tell? I have severe fibromyalgia so around my joints are usually sore but I did have a very painful knee when I was first sick with hepatitis and its sore again now as is the ankle on that side but could be the Fibro I don't know. Sorry I'm not more help.
I never ached before transplant, but now I do. My knees especially. Mine could be side effects of autoimmune suppressants.
Yes its mainly my knees and ankles , I'm on immuno surpressents so at least I know it's not my age ! Thankyou😊
I too get a lot of joint pain, I have cirrhosis and have had it for 6 years. I am a lot older than you 59. It might be a good idea to run it past you specialist.
Jacqui
Going the end of sept so will mention it ,thankyou😊
Hi my wife has alcoholic cirrhosis and her joint pain is bad. Otherwise she's doing remarkably well.
Dealing with her joint pain, this is now her only bad symptom having being taken off the transplant list (4 aborted attempts). Blood tests have revealed a significantly low level of vitamin D. She's just finished a a High dose 3 month course but it's too early to have results and she still has the pain. Otherwise she is very well despite having end stage disease it looks like the old warhorse (liver)is regenerating as her ascites has gone, she is strong and fit and is glowing. By the way she's 60.
Wow thankyou for replying , the joint pain started suddenly and I was unsure if related, glad to hear your wife doing ok 😊
In her case she spent most of 2014 in hospital so I guess the deficiency was due to lack of sunlight. Hers has gradually got worse. I do know in her case that another symptom she suffered was severe malnourishment so maybe there is a degree of pain regaining that muscle. I suppose if everyday your getting stronger, you do more hence maybe associated muscle and joint pain.
Hope you get your answers. Keep positive.
WOW that is great I now have renewed faith and hope in case things don't work out the way I'm hoping. Thanks for sharing!
For around 15 years I have had strong pain in my neck, hips and at various places in my spine. Over the last couple of weeks my right knee pain has become very bad and that's a new location and pain. All the joint pain began to be controlled with morphine day and night but as my cirrhosis is no longer being treated other than with pain relief the arthritis pain has gone to levels far heavier than ever before. But as morphine could be and is not good with liver they are trying to ease me off it so they can give my something more effective later. So yes joint pain is often part of cirrhosis and also can be the result f changing medication.
Hi there JaneRayne, I also have cirrhosis, NASH Pugh A, diagosed more than 5 years now, and the pain in my joint leaves me crying sometimes it's so bad. I have recently been told I have osteopenia and have been prescribed VitD/Calcium supplements, then after blood test Vit D seriously low, so on high dose and waiting to see if it helps. I had a cough, which I never connected, then someone else told me that since taking VitD supplement their cough went, and coincidentally so has mine almost. It all leaves me thinking the body is a mysterious thing. Speak to your hepatologist and perhaps get a bone scan. I am 55, a little older than you, and would say we are at that age when most women can have vit deficiencies anyway, without factoring in the cirrhosis.
I hope you manage to keep the pain under control and wish you all the best.
K
I've had joint pains , bad sleep, severe fatigue since I was 35 now 58. I was diagnosed with cirrhosis this year following siblings were also diagnosed ( Dr's believe vertical transmission from mother) On dihydrocodeine for pain which does ease it for a couple of hours at a time.
Hi Ingart.
Just read your post.
You mention vertical transmission from your mother.
Can I ask why she had Cirrhosis? Do you know why?
There is a Genetic fault know as Alpha 1 Antitrypsin Deficiency not often tested for. It can run in the family via a faulty Gene. If your sibling also has a liver problem and you have not got a definite reason re your mother, then you should be tested.
Alpha1 also causes lung disease, any of your family suffer this way?
Hi Carmik thanks for reply which is interesting . I don't know why my Mother had it. She didn't know until a couple of years before her death. One brother has cirrhosis the other is untouched. I will mention this as I am seeing consultant end September I am having difficulty breathing on exertion and lying down but put that down to enlarged liver and spinal arthritis. Thanks best wishesx
Hi Ingart
You will have to be very assertive. We have found that the medics all think they know it all but unfortunately where ALpha 1 is concerned a lot don't.
If he won't do the Alpha blood test let me know and I will point you in the right direction to get the testing kit from a clinic in Birmingham.
Good Luck
Our answer here is yes.
Mike (my hubby) had joint issues from the time he was diagnosed with cirrhosis due to Alpha1. He attended rheumatology clinics for years but all they kept saying was " you have bigger fish to fry regarding your liver". After transplant joint issues continued. He has had steroid injections in his knees, shoulder and ankle.
We kept on being given different diagnosese until around 2 years ago when asked for a second opinion. By this time he was over a year post transplant and had been complaining for years. Several medics said he had osteo and then a consultant told us he hadn't, that he walked badly and needed to see a podiatrist.
We waited 6 months for the appointment to be told by the podiatrist that he couldn't find anything wrong with the way he walked but his ankle was very stiff.
We then got an opinion with a different hospital. At first we were told that she knew the consultant who we had last seen and I don't think she was very interested. Eventually I got mad and pushed hard for further tests. He came back negative for any autoimmune diseases.
She then booked a scan and we waited so long we paid privately. This stated that he possibly had Osteonecrosis (compromised blood supply leading to crumbling of the joint) in his right ankle .
We went back to her and she said she didn't like going by a private scan as she didn't know the person who had reported on it. She then booked an MRI of his ankles. The next thing we knew we had been referred to the ankle specialist and he needs surgery to fuse the bone ,but being immunosuppressed they worry about bad infection post surgery.
The next appointment with Rheumatologist I asked for an MRI of his shoulders. She was shirty saying that they cost £500 a time and she had to justify it. In the end she booked it. Results, he needs operation on both his shoulders for "Impingement" but again a possible issue with post op infection.
So I am not saying you have the same but don't be fobbed off. Get a second opinion.
Hospitals are all out to save money and don't like paying for the MRI's but MRI is the only way that the soft tissues issues in the joints will show up.
Mike has now suffered many years of pain unneccessarily.
Low Vit D . Try taking a Calcium Magnesium and Zinc high quality supplement too. Magnesium often does not show as low in blood tests when it is. I had bad finger pain as well as knees and ankles. Now no finger pain ever, ankles and knees a little stiff first thing, gone within 5 minutes. Magnesium is important for muscle signals, it can be your muscles surrounding those joints which are actually the problem. Yes I did get the okay from my consultant.
Most of us in the northern hemisphere have low Vit D (due to not enough sunshine on bare skin) so its worth getting levels checked. Jane were you never prescribed calcium and Vit D? As you have a tp and are waiting for another I would always check with transplant team before taking any supplements, as I guess they know your medical history and we dont, 
Hi, I did a post a few weeks ago about having painful joints (I have cirhossis) and I got 21 responses from fellow sufferers. You might be able to look at my post titled 'pain in joints and feet'. I am not sure why it occurs but most days Im in pain especially in the morning. I am 45 and Dr g
sorry, half a message - Dr put me on suitable pain relief. As I can see from all the people that have responded to you it is a common problem.
Hope you get it sorted
Best wishes
julie
Hi Jane lagain. I go through phases with my cirhossis when I have days when the pain is unbearable like you. Have you had blood test for arthritis? You could have osteopenia like me (Ive had 2 bone density scans showing early osteoporosis). As Im not allowed due to liver anyy pain relief like paracetamol, ibuprofin, codiene makes me sick etc, I am allowed liquid morphine 200ml per week. I know its addictive but so is alcohol and I dont drink so I have the morphine to enable me to be more mobile. Ive never really had an answer. I take prescription calcium but I was told ages ago that alcoholic liver disease temporarily affects the bone marrow. Ive been teetotal for quite a long time but the pain in my feet, hips and back is awful and I feel ninety not 45.
Seeing a hepatologist for the first time next month so I'll ask him and post my info on here if I get any. You are not on your own and I sympathise with you sincerely.
Finding pain relief with cirhossis is difficult via medication. I dont know what to suggest you do other than the usual GP or specialist whos looking after you to see what feedback you get from them. Dont suffer in silence.
Best wishes
julie
Hello Jane,
My joint pain is so bad at the moment that I can't sit on the PC or even think clearly. I have a NHS powered wheelchair on long term loan from the hospital. They bought it new for me then added adaptions to allow me to fit in it better. The total they spent on it was £5,500 and my pain has moved and increased so much that I need more adaptions doing to it as it shakes a lot which causes so much pain I often can't go out in it. That will be a great help and the hospice wants me to come off the morphine I'm taking and then swap it for Fentanyl which again may help. I know fully that I will reach a point with the pain that I will have no choice but to accept and live with most of it.
Hope your darts went well last night and other than this pain you are keeping well.
Steve
I don't have cirrhosis or hepatitis (I have primary liver cancer). I also get joint and muscle aches. Some days are worse than others.
I have been tested for arthritis but that came back negative.
When it's really bad I take pain killers but I do try to limit how many of these I take.
I take vit d3,don't know if it helps but I guess it doesn't harm.
I have fibromyalgia (also AI disease) which causes terrible body pain. Sound like its something you should look into. Get your GP yo send you to a Rheumatologist. All the best
Yes it's murder. If yours is from drinking ( I know many doctors say it, a type of hep that's not caused by alcohol ) it's probably osteoarthritis as the alcohol attacks and wrecks your bones. Mornings its crippling but exercise and painkillers ( not anti inflammatory) (I all you can do. You DO NOT want to exercise when you feel like you don't even want to get out of bed, and anti- inflams would work much better, but they damage your stomach and liver. They put me on morphine, but I decided to come off them so am now on tramadol it's a synthetic morphine but it doesn't work that well
Ask if you can try azathioprine, which is for liver damage and is a bone anti-inflam but not bad for your guts, but I think you have to get it from a specialist. I did anyway.
Hope that helps, because it's a real downer and makes everything an effort, so you end up doing as little as poss.
Jill
i suffer from joint pain but im older as well. i know that pain killers give me joint pain, when i have days when i dont need so many pain killes then im in less pain and i notice if i sit around a lot i get very sore joints sometimes when i walk my ankles ache and my knees are sore but its not the same every day. i know that inflamation causes pain and i try to juice most days or every second day if i can and i juice celery a lot as it reduces inflammation. here is a list i googled
Search Results
Image result for what vegetables reduce inflammation
Include plenty of these anti-inflammatory foods in your diet:
tomatoes.
olive oil.
green leafy vegetables, such as spinach, kale, and collards.
nuts like almonds and walnuts.
fatty fish like salmon, mackerel, tuna, and sardines.
fruits such as strawberries, blueberries, cherries, and oranges.
i hope this helps. you can always google it your self and find food thats good to reduce inflammation, if possible get organic as much as you can afford rather than not.
i do hope this is some help to you.
Painful joints"? Only when i don't use a filter.
I have alot of joint pain in my knees and arms, I usually suffer more after being asleep for awhile or sitting in a car for a period of time. Sometimes I wake up feeling like I have been hit by a truck and just lie there and weep for a bit until my body loosens up. So I can definitely relate.
Hi
I've got Nash with fibrosis. Had painful joints for ages, have been diagnosed with Nash and fibro, which explains the pain, also checking lupus!! Joint pain started before being diagnosed with Nash and fibrosis . Getting worse as fibromyalgia affects muscles, joints and tendons too !!. Sleep! What's that!?! Get about an hour per night !!!! Xxxc
I also have cirrhosis of the liver and have joint pain most days I use a wheelchair to go long distance.
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