My partner's story

[Bibbs]

Hello to everyone, I've been a silent member of this group for a few weeks and I have found your posts really helpful. I have decided that now is the time to share with you the story so far with my partner and his diagnosis of alcohol related liver disease.

He's 43 years old and he's been a daily drinker for the past 15 years or so, typically started on 1 bottle of wine each evening, gradually moved up to 2 bottles, then briefly reached 3 bottles. Back in October 2020 and again in December 2020 he suffered two bouts of insomnia, which both lasted 3 days, and culminated in hallucinations and personality changes. Both episodes ended with him eventually falling asleep and returning to normal. I have no idea whether these were linked to his impending liver failure, but they were absolutely terrifying for us both. Back in April/May 2021 he lost his appetite and rapidly started to lose weight. He also had a couple of days where he was repeatedly sick, and he started having bouts of extreme fatigue where he couldn't stay awake for more than a couple of hours.

In June 2021 his face and the whites of his eyes started turning yellow, and by the end of June his belly had started to swell. At this point I finally managed to talk him into going to A&E, which he did, and he was diagnosed with stage 3 decompensated liver disease. The consultant told him that had he not been admitted on that day, he would have been dead within the week. He was prescribed a course of steroids, but was told that if these didn't work, he would have another month left at best. Thankfully they did work, and he was discharged from hospital 9 days after being admitted.

Things seemed to be going really well - he had plenty of energy, was embracing his new diet, and had stopped drinking. However, around 10 days later he had to stop taking his diuretics due to his sodium dropping too low. Within a matter of 3 days, the ascites and edema had returned, he had lost his appetite, he was struggling to sleep and he was in a really low place. He started with abdominal drains, having 2 over a period of 2 weeks, after which his sodium had returned to an acceptable level and he was able to resume his diuretics, albeit at a lower dose (he was originally on 200mg Spironolactone and 40mg Furosemide daily, going down to just 100mg Spironolactone).

At this stage, something appeared to kick-in. The edema and ascites completely disappeared over the course of about 1 week, even with the lower dose of diuretics. Since then, he has been eating really well, his weight has stabilised at a healthy level, and his energy levels have improved. He has been able to reduce his dosage of diuretics to 50mg Spironolactone daily, and his consultant is now talking about stopping the Spironolactone early in the New Year. He's had an endoscopy, which has identified grade 2 varices in his esophagus, and he has started taking Carvedilol. He has also just had a bone density scan to check for osteoporosis, and we are now waiting for the results of that. He's not had a further CT scan since his admission, but his consultant mentioned a 6 month scan at some point in the near future (so I'm guessing this will be in January).

However, he is now experiencing attacks of pain in his shoulders, upper arms and neck. Generally these are at a fairly low level, but there have been a couple of occasions where they have been far worse. He mentioned this to his consultant last week, but she didn't really comment any further so I don't know whether these pains are to be expected, and if so, whether this is a "stage" that will pass, or whether he can expect them indefinitely. He has an appointment with his GP this coming Thursday to see whether there are any painkillers that are relatively OK to use in case he has any more of these attacks where the pain becomes unbearable. I had a talk with his GP, who was reluctant to prescribe anything, but did mention opiates as a group of painkillers that have some options for people with liver disease. Surprisingly she didn't rule-out NSAIDs, which I thought were out of the question.

I would be grateful if any of you guys could share your experiences with upper body pain, e.g. how long you've been experiencing it, when it started, how long it went on for (assuming that it ended or subsided) and what painkillers (if any) were helpful.

Thanks in advance for your support

[Hidden]

Hi Bibbs

Welcome and thank you for sharing with us.

He is so very lucky to have you in his life, had you not convinced him to go to A&E when you did he would probably not be here today.

Dave

[Bibbs in reply to Hidden]

Hi Dave, thanks for your reply. We're both just relieved that I did push him into going, and he did make the decision to go.

[DB50]

Hi Bibbs,

I was prescribed codeine (1-2x30mg up to four times /day) for joint pain unrelated to my liver disease (NSAIDs having been ruled out), and found that it really took the edge off things. I’m also one of those people for whom analgesics seem to be a bit ‘hit and miss’ in any case, but codeine really helped, whereas paracetamol, for example, did not, when I took it before my liver diagnosis.

On the flip side, they can lead to addiction, however, and I was advised not to use them for more than a few (four, I think, but you’d be informed) days at a time. They also gave me constipation, which I hadn’t experienced previously.

Good luck,

Richard

[Bibbs in reply to DB50]

Hi Richard, thanks for your reply. You've reminded me that the GP mentioned constipation as a possible side effect of opiates, which would be a problem as he's currently taking 20ml lactulose. If he is prescribed opiates, then I'll have to ask the GP whether it would be worthwhile possible increasing the lactulose dosage on the days when he needs to take them.

[Zukosmile07]

Hello Bibbs.I have been through the exact same, in fact at one point I thought you were describing me. I know I had gale stones and when they grumbled the pain escalated around the body. I've tried most of the pain relief. The only ones to take the edge off can create constipation (opiates). Now I was taking nefopam (which is not harmful to the liver) but can make you a little drowsy. I also was prescribed docusate, lactalose and 2 senner before bed to help with constipation. (I had no problems with addition, I'm mean if he can stop drinking like that,,, then I wouldn't worry).

Also when the ascites fluid did build up (sometimes not noticeable) it would push my liver up onto my diaphragm which created upper pains. So monitor your weight daily and that will tell you about the fluid build up.

All the best Danny x

[Jebediah454 in reply to Zukosmile07]

NEFOPAM!!!!! God you've just solved a damn mind bogler I've had for years!! I got prescribed that about 8 years ago and couldn't remember the damn name, not for liver disease but God that stuff was awful for me, because I couldn't find it I assumed the NHS had stopped prescribing it completely but I've found it on the website again. I know my GP has said they didn't like prescribing it but it seems to work wonders for certain pains according to some people

[Bibbs in reply to Jebediah454]

Hi Jebediah, when you say it was awful, did you suffer any particular side-effects, or did it just not have any effect on your pain?

[Jebediah454 in reply to Bibbs]

Hi Bibbs, Unfortunately I think my prescription of nefopam was made without much knowledge of the drug, I eventually found out that what I would be diagnosed with was a big no no for nefopam as it aggravated one of the symptoms (again, not liver related). I think its a drug where a lot of GPs don't have particularly great knowledge of and the dosing may need to be tailored per each individual depending on any side effects. If I recall correctly, my GP had only ever prescribed it to female patients, I can't remember for what it was most effective for but I know that it's also not that great in elderly males for similar reasons to my experience with it

If its an option to help subside the pain then its absolutely an option worth trying, just make sure to follow the doctors guidance and if there are any side effects report them. What did not work for me, might work wonders for your partner

[Bibbs in reply to Jebediah454]

Hi Jebediah, and thanks for the extra info. I'll take a closer look into Nefopam before we visit the GP tomorrow. If the GP doesn't come across as confident in their knowledge when I mention it, then we'll definitely think twice about trying it!

[Bibbs in reply to Zukosmile07]

Hi Danny, thanks for your reply. I'll definitely check out Nefopam, and I'll mention laxatives and whether an increased dose of lactulose (which he is already taking) or something in addition to it, would help on the occasions if he were to take an opiate-based painkiller. Thinking about ascites, when he was suffering the worst of it, he didn't have any related pain, as it was generally feelings of discomfort. Also these episodes of pain seem to be pretty random - the latest one was in the early hours of this morning - and they seem to subside after a few hours.

[Zukosmile07 in reply to Bibbs]

Gall stones... Well mine was. I kind of dealt with the pain by cheering myself up. Little things like the time I hit my thumb with the hammer ( that hurt). Hahahaha, no joking aside, one of my gall stones became free and got trapped in my bile duct. Now that is a pain I wouldn't wish on anyone. No pain killers would touch that. Nasty cirrhosis seemed to make all pains more painful. I don't know what your position is but you have to take things one day at a time. Different everyday. Getting your gall bladder removed is a massive pain relief in my case I had to wait for the liver transplant and operated on both together.

[Zukosmile07 in reply to Zukosmile07]

I only took the nefopam because my liver was stage 4 and even paracetamol could effect it. A mixture of paracetamol and Dihydrocodeine worked together with less constipation. Check with your consultant because those 2 together was prescribed by the pharmacist and agreed with the consultant.Hope this helps.

[kensimmons]

Could it be sore muscles from sleeping so long and soundly in one position all night?

[Bibbs in reply to kensimmons]

Hi Ken, thanks for your reply. He isn't sleeping for long at the moment. Generally he gets an hour or so before he needs to pee (due to the diuretics) but he's finding that when he does wake-up he struggles to get back to sleep because of the mild pain. Last night he had an episode of more severe pain, which kind of just came on randomly.

[kensimmons in reply to Bibbs]

Could he try sleeping elsewhere, like in a chair or recliner that doesn't put pressure on the back (shoulders) so much? It would also help him if he has to take care of business during the night, easier up and down. Good luck, I'm sure you'll figure it out.

The general news though, is very positive per your story. Keep at it!

[Bibbs in reply to kensimmons]

Thanks for your kind words Ken!

[Bibbs]

Well we saw the GP yesterday afternoon, but the outcome was a bit disappointing. In spite of my partner’s liver disease, she initially suggested that the shoulder and back pain must be some kind of muscular injury that would clear up of its own accord within a couple of weeks, and codeine would not work because it doesn’t relieve muscular pain. I challenged this with the story of the pain coming and going, and not correlating with any kind of movement. I also mentioned that I’d been seeking advice from this group. She then recommended ibuprofen gel or cream, on the basis that it doesn’t have as much of an effect on the liver as ibuprofen tablets. To cut a long story short, we asked her to write to the consultant hepatologist at the hospital and seek her advice before going any further.

So I just wanted to ask if any of you guys have also experienced these bouts of pain, and if so, did these become less severe or frequent after a while, or is it something that you are having to live with indefinitely?

Thanks in advance for your support

[Jebediah454 in reply to Bibbs]

It's a shame the GP wasn't a success, they're right about the gel not having as much effect as the tablets, but it's not because it's toxic to the liver, im sure it's because it can cause internal bleeding especially in liver disease so ignore that advice until a specialist tells you otherwise.

Generally I would probably run all pain relief via a consultant, if your husband has the diagnosis he should be able to get in contact with the specialist's assistant as a direct line for comms, normally that's the case for most chronic illness.

I hope you get answers soon so that you and your partner can start combatting this disease effectively!

[Jebediah454 in reply to Jebediah454]

Also the comments about opioids not working for muscular pain made me giggle a little bit. Opioids help numb most pains, i think opioids only struggle with nerve pain

[Zukosmile07 in reply to Jebediah454]

Here,here. It definitely depends on the individual.Danny x

[Bibbs in reply to Jebediah454]

We’ll it’s taken a while but we’ve received the feedback from the consultant hepatologist that he should not use ibuprofen creams or gels, and stick to deep heat, Biofreeze or deep freeze. We’ve found that although these don’t have much of an effect, Biofreeze seems to be the most effective. Does anyone have any tips for similar products that have worked well for them?

[jak547 in reply to Bibbs]

I am almost four years into this, but about the six months dry mark I had pretty intense pain in my shoulders and upper arms, it lasted for about four or five months if I remember and hasn't returned, I never took anything for it just dealt with it, I was worried about taking anything, mine came on like a wave and then would stop, but it did make me sore in those areas all the time

[Bibbs in reply to jak547]

Hi jak547, did you ever get to the bottom of what was causing the pain, and did you do anything in particular to tackle it?

[Aotea2012 in reply to Bibbs]

I had joint and muscle pain. In fact I posted about it. It was about 4 to 6 months after I was discharged from hospital where I’d been diagnosed with cirrhosis. I was feeling well but was in a fair amount of discomfort with my muscles. I was worried that it was being caused by muscle wastage. I raised it with my specialist, my dietician and went to see my GP, who also asked the practice physio to have a look. No one was quite sure. I did some tests to see if I was losing strength in my muscles which I wasn’t. If anything my muscles appeared to be returning to normal and I was able to lift heavy loads. I had upped my exercise regime, was walking and running more. My GP wanted me to give it time, not resort to painkillers, to continue with exercise and thought it would settle. He explained that cirrhosis can produce an inflammatory response, that I was exercising more and that it had taken some time for my body to get unwell so it was likely that it would take some time to recover. He was right. It just disappeared. All discomfort gone, running every day and feeling well. I’m glad I didn’t take anything for it as it helped my body recover naturally.

[Bibbs in reply to Aotea2012]

Hi Aotea2012, thanks for your reply. I've contacted the local GP practice to make an appointment with the physiotherapist in January, so we’ll see how that goes.

[Cb1963]

Hi Bibbs, I'm sorry to hear about your husband's difficulties with his health problems,now you'll have to bare with me, because I may be a little vague because I'm nearly 10 years sober, and it's difficult remembering all of my past pains with drink related issues, however when I stopped drinking I do remember that I went to the doctor thinking I had problems with my heart however he just squeezed my rib cage and said I was fine,BUT, I was getting pains all around my shoulders and upper body area for a couple of weeks, and my arms would thrash about, and my legs were doing the same, that stopped, and after that I thought I was OK, however around 3 months later I ended up with constant pins and needles in my feet and lower calf muscles, and muscles spasms, and still have this condition today and also has progressed into my hands, but I'm B12 deficient, so I don't know if this is related, but the condition was diagnosed as neuropathy many years, not nice, nerve damage, obviously their are certain medicines for this, pregabalin, ametriplyne?Unsure of the spelling, but whilst your husband's liver is delicate and in repair mode I'm sure the doctors will be careful on what he can be prescribed, i wish your husband better health in the future 😇

[Bibbs in reply to Cb1963]

Hi Cb1963, thanks for your reply. He’s not experienced any pins and needles or any thrashing about of his arms or legs, but he has had the upper body pain a that you mention. We’re going down the physiotherapy route in January so fingers crossed this helps, and I’ll keep everyone posted!

[Cb1963 in reply to Bibbs]

Good luck, I hope things go well, kind regards 😇

[jak547]

I am almost four years into this, but about the six month dry mark I had pretty intense pain in my shoulders and upper arms, it lasted for about four or five months if I remember and hasn't returned, I never took anything for it just dealt with it, I was worried about taking anything

[bcsurfer]

Hi. Quite a journey for you both. I have never heard of a connection between upper body pain and liver disease. I expect the two are entirely unrelated, save for the possibility that the liver disease may have restricted mobility and exercise. I would strongly recommend exploring the exercise route first, if only to rule it out. Heading for pain killers with liver complications comes with significant risk. Opiates are something I would imagine best avoided, not least of all because an addictive personality can quickly transfer from one source of addiction to another .

[Bibbs in reply to bcsurfer]

Hi bcsurfer, thanks for your reply. We’re exploring the physiotherapy route via the local GP practice in January, so we’ll see how that goes. The consultant hepatologist has come back to us confirming that ibuprofen creams and gels are not to be used, and recommended deep heat or deep freeze.