My husband has cirrhosis and was in hospital for a month last year. He came out in July and was told he had 8 weeks to live. Initially he was completely bed ridden and couldn’t even sit up. With sheer determination, he is now walking with a stick and his liver has stabilised. We accept that he is living on borrowed time but it does feel like a miracle.
His main issue now, is the pain in his legs. He walks with a stick but can’t really go far because his legs are weak. My question is, is this a symptom of cirrhosis or should we be seeking answers elsewhere?
Thanks
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WOOLKITTY
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I looked back at some of your previous posts and I suppose the main question is whether he’s stopped drinking? If he has and his liver has stabilised then there’s a chance that the leg pains will go away. They are probably due to muscle weakness. When our livers are damaged they operate like a faulty boiler and use up a lot of energy to keep going. That includes using up muscle as an energy source. A combination of being bed bound and having liver disease will have caused no end of damage. If he can continue to remain abstinent, eat a high protein diet and build up his muscles through exercise (however limited), then he has every chance of improving. No one can say how a liver will behave…not even doctors. They are an unpredictable organ but thankfully a very forgiving one. If he does the right things….no alcohol being the main one….then the little miracle you say that’s just happened could multiply.
Yes, he has totally stopped drinking. He was in critical care for the month he was in hospital and hasn’t drank since May last year. The physiotherapist worked with him for 6 weeks to get him sitting up and able to transfer to a wheelchair. The physio then stopped because they said he would never walk again. Since then, we’ve worked on his diet and he continues the exercise he was given by the physio and he is getting much better with walking and even ventures into the garden. He is on a cocktail of meds which seem the Drs don’t want to mess with but we just can’t get past the pain. I just wondered if it was common with cirrhosis
Has he suffered major muscle wastage? I imagine sitting in bed for a month or not mobilizing much will have impacted his strength. Is he following a high protein diet? It's the only way try to maintain muscles along with exercise.
My hubby has seen a dietician and physio in liver unit to guide us on appropriate diet plus provide strengthening exercises. (There are some good videos showing low impact, seated muscle strengthening exercises on You Tube which might be helpful).
I also was in a bad way with pain in my legs before and at diagnosis. It all happened extremely quick. Like I had falling off a cliff.
My balance wasn’t there at all either. I’ve mentioned on here before my go to in life has always been exercise to almost reset everything, from a cold to detox etc.
my prognosis wasn’t great but offered some hope in the form of abstinence.
I can only tell you my experience obviously. I went from running half marathons a few years ago to be unable to walk 100metres.
Not just my legs but my physical condition was so bad I couldn’t walk up a few stairs.
the first step was walking to a gym. Then I’d walk on a treadmill then do easy multi gym exercises. Again….. I used to bench 100kilos at this point I couldn’t do 20 kg.
I’ve had to adapt everything, it took 4 months for me to be able and feel progress, my recovery time was 3 days between training. I just put my whole focus on trying to feel as fit as I could, eating well but still having chocolate etc.
9 months on now from diagnosis, I am now compensated, I was told I wouldn’t manage this due to how wrecked my liver was and the state of my bloods. I do believe they can only asses what’s in front of them and draw a conclusion from the damage at the time.
But even a damaged liver can find a way to work….. I’m training 6 days a week, benching 70 kg, lost 4 stone healthily and although I have very limited knowledge of how my liver is looking ( never had a follow up US yet) my bloods have all improved and I feel great.
My point is if I never pushed my self to see if I can improve my health by my own actions I might not be here today. There are many positive stories on this sites similar to this but have far more successful outcomes overtime compared to mine thus far.
I know people who gave up but looking through this site will hopefully give inspiration.
I was diagnosed with compensated cirrhosis in August last year. At that time I could barely walk. Gave up the booze straight away and my health has improved dramatically, although I still suffer really badly with aching legs. I have found that eating a carbohydrate snack an hour before bed helps immensely. I used to wake up in the morning feeling like I'd been kicked around the room. Terrible aches all over. But now, after seeing someone's post about eating before bed, I can honestly say it makes a huge difference. I still ache, but nowhere near as bad as I did. My legs, and particularly my knees, are bad all day every day. A 15 min walk usually helps ease them, but the uncomfortableness never goes. Just one of the many niggles of cirrhosis.
it is worth seeking a second opinion particularly once he recovers some muscle mass and stabilises further. My partner was told for 2 years his pain was liver related before further investigation revealed he has rheumatoid arthritis
I was told liver disease can lead to early arthritis and osteoporosis (and even diabetes), but there is so many complications it seems that can come and go with all forms of liver disease it’s hard to determine exactly what causes this and that and it seems even the doctors don’t really know.
He is doing well and whilst I wont reiterate the previous comments, which are all really helpful, I will add my own experience although it may be slightly different as my legs were so painful I couldn't even rest a book or the hairbrush on them. Probably completely different but mine was alcoholic neuropathy caused by the cirrhosis. My GP prescriped Amitryptilene which he advised would take 12 weeks to start working and he was right, the pain did then go. I am still taking them 11 years later and pain still gone. If it is down to muscular pain only, this won;t be the solution but I thought it may be of help. All the best.
Wow 11 years great going. I have alcohol neuropathy and was prescribed Amitryptiline (10mg), but I really don’t take them as I worry they will damage my liver further. I went from likely decompensated cirrhosis to what they now term as moderate fibrosis but I still suffer with AN and muscle aches and pains, some days I’m fine, but others is a real struggle. My hep doctor seems to think it’s down to the damage my alcoholism has done to my body and not specifically liver related, but I don’t know, I’ve been sober just over a year now and have tried all kinds of diet related sources to alleviate these issues to varying degrees of success and while I’m grateful if this is the only real downside to what I put myself through as I know I could be way worse off, I worry how bad it will get eventually as some days just walking feels like I’m walking on shards of glass and the pins and needles at night are awful at times. Vicks rub does help, but only briefly.
What different diets did u try. I went for TIPs on Thurs but was told the next day it wasn't a success to yo portal vein or summert? I'm happy to try again as transplant scares me alot more.
Sorry what you are going through, I can’t imagine how that must feel. I too would be scared of a transplant right now, although when I was in hospital the guy near me, his son had one 16 years ago and does half marathons all over the world, his was through alcoholism and he looked amazing.
Regarding my own diet, I try to stick to a Mediterranean diet if I can, but I do like to experiment with various natural food sources like nuts, berries and especially my own homemade herbal teas using natural leaves and buds.
I swear - and this is just me, I’m not advocating any diet advice or medical advice here - but adding 100% natural turmeric and ginger with mother apple cider vinegar (add black pepper as it absorbs better, especially if you’re on medication) to my teas have worked wonders for me personally.
I’ve been experimenting with them for about 7 months now and do feel the benefits, I now sleep much better, get less muscle aches and spasms and neuropathy (although I still get them). I used to get really bad aches and pains in my hands and arms, where my hands would cramp up and kind of lock and they were very weak where I could barely grab a mug, but that has pretty much 100% disappeared and again I think it’s down to my herbal teas.
I also experiment drying out berries, roasting them and then crumbling them into a homemade tea-bag that I strain for the berry goodness, lots of oxidants in there. Coffee is also good for you, I make my own root of dandelion ‘coffee’ and use almond milk.
My doctor told me whatever seems to work, keep at it, but in moderation of course, I’ve replaced my whiskey cravings for my herbal teas ha ha, my house can smell at times mind.
I do reccomend speaking to a dietician first, however. I don’t have cirrhosis (although I do have fibrosis which is scarring and who knows…), although at one point it certainly seemed that way with ascites, jaundice and a fibro scan score of over 360 Cap and 22.9kpa, down to 144 and 9kpa respectively now.
Try not to give up on getting TIPs done, seek more advice and a second opinion. The portal vein can tighten or loosen up which I know can complicate such a procedure. I know I cried when my silly 5.5litres of ascites was drained, the relief, but when I was told I’d likely need one every month or so by the nurse my joy turned to misery.
Thankfully it’s not returned and I put that down to a strict low sodium diet, no alcohol and sugary drinks or any meds that I’m not prescribed (and even then I try not to take any) and mostly because of the natural diuretics in my teas and coffees and fruits and veg rather than the medication they originally gave me which weakened my kidneys and gave me tingly hands and bad stomach cramps.
I get why they are needed, they obviously work, but at what other expense and that’s what liver disease seems to be all about, solving one issue only for a new symptom to occur as a direct result, it’s like whack-o-mole as someone on another forum likened it to.
Regarding a fear of transplants, when I was in hospital I seriously thought I’d be lucky to see out the year and I wouldn’t have if I had returned to the drink, but beriefly if back then someone said here is a transplant and you’d be all fine again as that’s what I thought I’d need, I’d have taken it.
Not now though, I’d like to take my health in a positive direction as far as I can and see if I can determine my own outcome first. But sadly some people don’t have that option and a transplant is the only thing that will save their life. I hope you never have to need one and those on the list and needing one, I wish everyone of those people nothing but the best and a long life post transplant.
There are lots and lots of success stories with people living 30 + years now thanks to medicine. Hopefully they will find something that works on reversing cirrhosis soon because liver disease is a big killer and a major health issue the world over. They spend more on product advertisement for the very things that damage our livers and other organs than they do on research and cures and that says everything about the modern world. Sorry for the long post, take care,
That is amazing news and so hopeful for everyone so thank you for sharing. I wonder has he ever smoked? My husband has alcohol induced cirrhosis but also peripheral vascular disease from smoking which affects his walking, especially when he first starts to move. This is a cramp like pain which disappears when sat down. More recently it wasn't disappearing but after losing 8 pounds from an ascitic drain, abstaining and eating better he seems to be walking a bit easier.
Before I had my Transplant I was having great trouble walking - my legs felt like lead and sometimes one would just give way. My doctor sent me for an MRI scan and it was found that my spinal cord was being “compressed” by my spine in several places. I needed an operation to remove this “compression” but that had to wait until after my Transplant.
I don’t know if these symptoms are anything like your husband’s but just another thought- however unlikely.
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