I know this is only a minor problem compared to many on here (and I apologise for that) but does anyone have any experience of trying to get adequate pain relief when you have cirrhosis? I have widespread osteoarthritis, and severe nerve pain caused by problems with my back and neck - but the Zapain my GP has prescribed has next to no effect.
I discussed this at my last liver clinic appointment, and was told they would be ok with me having something like Tramadol (or the Butrans patches I had several years ago, but gave up because they made me so sleepy) - but my GPSs flatly refuse to prescribe any stronger pain relief for me.
Call me a wuss if you like, but I’m getting absolutely desperate 🥺 I saw a knee surgeon yesterday and was hoping that he would replace one or both of my knees - but he said he’s not going to do it just yet because I’m ‘only young’, and he thinks I will still be in in almost as much pain afterwards because of the problems with my back 🤦♀️
It’s getting to the point where I’m tempted to take NSAIDs regularly (although I haven’t yet), because although I try my best to just live with the pain, not being able to get to sleep, sit comfortably or walk properly is driving me crazy! Hell, I even fancied a stiff drink when I left hospital after being effectively told I was just going to have to live with it - even though I’ve never been much a drinker, and haven’t touch a drop since my cirrhosis was diagnosed!
Any suggestions? 🤷♀️
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HeatherAB
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I'm sorry to hear about your pain issues. May I ask you a few questions please? Have you been told the cause of your cirrhosis? As you'll know, everything we either take or rub into our skin, ends up going through the liver at some point. Some of these drugs can be quite toxic for an already struggling liver and further damaged.
Sometimes it can be dangerous asking too many doctors to become involved. You may find that the consultant that is dealing with your osteoarthritis isn't interested in your liver, and the Liver consultant may not be very clued up about your osteoarthritis. These are all specialist in their own chosien Then you have your GP too. All these doctors don't necessarily talk to each other. So your GP acts as an overall medical point of contact monitoring all your health concerns.
The other thing I’d like to ask is, have you ever been prescribed any anti-inflammatories? I see from your profile that you also say you suffer from clinical depression. What if the osteoarthritis was causing your depression? There is a book which really helped me to understand and accept my survivor's guilt, following my liver transplant. The book is called, “The Inflamed Mind” by Prof Ed Bullmore. There is a video that explains this.
Hi Richard - many thanks for your reply 😊 I had non-alcoholic fatty liver disease for many years, developed fibrosis, and then cirrhosis. I’ve also been told that I have metabolic syndrome and have borderline type 2 diabetes. I’m now having yet another go at losing several stones and eating more healthily, to try to take the pressure off both my liver and joints.
I’ve always struggled with my weight, but have also always been very active, until my osteoarthritis got to the point where even normal day-to-day living became difficult. This has made my depression worse, and I’ve increasingly been comfort-eating - which I know is stupid, but I feel like I’ve lost control of my life 😔
Several years ago I was prescribed Naproxen - but didn’t take it for long as it upset my stomach.
I was prescribed Tramadol for a couple of years, and then Butrans patches for while - but now only have Co-codamol for pain relief. Unfortunately I’m also on medication for high blood pressure and cholesterol too, as well as antihistamines, omeprazole and gabapentin ☹️
The video was interesting thanks, and I’ll take a look at the book.
The orthopaedic surgeon I saw suggested I ask my GP if I can be referred to a pain clinic. Has anyone else done this, and if so, did it help?
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Hi Heather, have you considered a tens machine? It got me through two labours but I know people with arthritis use them too. Might be worth talking to a pharmacist about it.
Hi! Thanks for your reply 😊 Yes, I bought a tens machine this week funnily enough, and it seems to help a lot on my worst knee. Now I just need to figure out where to place the pads on my back to see if it makes any difference to both knees at once 👍
I have your exact issues. I went to a pain specialist & even got radio frequency ablation on my lumbar spine but the relief was only temporary because the nerves grew back. It did relieve the lumbar pain but not the neuropathy or leg spasms or my osteoarthritis. Gabapentin helps and I recently increased the dose I take 300 mg three times a day, (every eight hours), consistency is important. It seems to be working my pain has been so much better that I can focus on being more active which helps everything else. I noticed today that because I’m in less pain and more active I was able to do my grocery shopping and do quite a bit of walking which was great. Some of the non-medication things that help me are a high infrared heating pad that I use on my lumbar spine at least three hours a day. TENS worked for a while and then it didn’t work anymore. Physical therapy helps a ton but I have to do it every single day, which I do, (the therapist gives me exercises to do at home every day). If it gets really bad at night I have a spray bottle of concentrated liquid magnesium flakes. I spray it on my legs and low back and rub it in and that really does seem to help when the pain is super acute and I can’t sleep. One of the exercises that I can do are recumbent petals sitting in my recliner and I’ve gotten up to two hours, (split-up), a day. I do have to wear a knee brace on my right knee but I found one that I can just strap under my kneecap so it’s not cumbersome and it’s really easy to put on. It alleviates my knee pain so that I can exercise. I use the pedals with no resistance. Just keep trying everything and you’ll eventually figure out what works, and yes a lot of times you have to go see more than one doctor to finally get the correct diagnosis/treatment. I like gabapentin because of all the pain medication‘s out there it seems to be pretty safe for your liver and pretty safe overall.
Hi Frida - many thanks for your long and detailed reply! I’m sorry that you’re dealing with this too, but it’s been very useful to hear what’s worked for you. My gabapentin has recently been increased to 3x a day, and I’ve just bought a chair cycle thingy to see if that helps to keep my knees moving. I’ve was given an exercise sheet for my knees, but a couple of them I just don’t seem able to do - but I’ll keep trying. I was on a bit of a downer after seeing the knee surgeon as my GP seemed pretty sure that he would replace at least one of my knees, and I hoped that might stop at least one of them hurting - so finding out that for now I’m just stuck with the pain was a huge disappointment!
I still need to find out what exercise might help my back. I was offered an operation to remove a cyst on my spine, but we agreed that at the time the risks might probably outweigh the benefits, especially as I have a couple of prolapsed disks and a wonky vertebra too. Unfortunately the pain has got a lot worse since then, so I’m hoping I can get a referral to a pain clinic, and am also trying hard to lose weight in the meantime.
Thanks again for your reply - I really appreciate it! 😊
Hi Heather, when I read this, I thought I had been writing posts in my sleep. I have all the pain you described day in and day out. Riddled with arthritis exerywhere, plus AVN in hips. Spine is terrible. Along with eodema. Also I get told im too young because replacement knees, hips etc only last around 8 yrs. Ive been taking tramadol. This works for me too a certain extent, have you been offered the steriod option? Iv had the guided injections in hips. Worked for quite a while. Plus every 4 months injections in hands. If you have multiple pain there is one big injection in your backside to cover all. My physio is imformative about whats available. The key is ask for them and insist. Cirrhosis is enough to deal with in mind and body. All this pain aswell is really debulatating and frustrating. I hope this helps and good luck. Nicki.
Hi Nicki - thanks for your very helpful and supportive reply. I’m sorry to hear that you’re going through this too, but it’s nice to have someone that really does understand! Sorry for the delay in replying but I’ve had some sort of bug and ended up completely forgetting about this 😳
But no, I haven’t been offered steroid injections yet - but have now made an appointment to see my GP and will ask her then. I can’t go on like this - I’m becoming more and more fed-up and unfit! Thanks again, Heather x
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