Joint pain

[Annie2402]

Hi. I wondered if anybody had any ideas to help with the joint pains I have every day. Fingers, knees, elbows??? I try to go for at least 2 Mike walk a day to keep muscles from wasting but it is getting harder to do abd more painful. Consultant Says he has not heard of this before but to take paracetamol up to 3 times a day. Gp sent bloods off but no rheumatoid arthritis. Have been refereed to rheumatology but 20 week wait. The pain snd stiffness driving me nuts. Any suggestions for relief would vd appreciated x

[carmik]

Hi Annie

What exactly is your health issue, need to know before I answer this.

[Annie2402 in reply to carmik]

Sorry should have said. I have liver cirhossis

[Hidden]

May l ask please, what strength is the Paracetamol? The odd tablet now and again is alright, but continued use will do harm to your liver over time.

As the muscles surrounding the joints begin to waste away, more strain is put onto the joints as theres nolonger the muscle support. This could also cause the joints to begin to rub together and reduce the amount of cartledge between the joints.

I would ask your doctor to refer you to a physiotherapist in order to build up the muscle and repair the damage. Please seek medical advice and mention possible paracetamol liver damage to your GP.

[Annie2402 in reply to Hidden]

Hi thanks for replying. I have discussed this with consultant and it was him who said I could take 2 paracetamol 3 times a day. I only take 2 as I am very wary of doing more damage but pain can be quite debilitating

[Laura009 in reply to Annie2402]

Hi Annie

My husband has pmr ( but not cirrhosis) for which he has to inject methotrexate weekly which carries side effects including liver damage. For a boost of pain relief he can take codamol or ibruprofen as approved by his rheumatologist and with severe pain he can take a steroid hit and taper off over a week or so. But absolutely no paracetamol. So there are other pain relieving possibilities available for you to discuss with your rheumatologist, without causing further damage to your liver.

Good luck

Laura

[Annie2402 in reply to Laura009]

Thanks Laura just feel I'm bashing head against a brick wall when it comes to getting any answers from hospital or gp. Oh well will keep persisting x

[Laura009 in reply to Annie2402]

Yes do. I know your condition is different from my husbands but its all pain and debilitation and you must be given something to relieve it. Ask about the steroids maybe? make sure they realise you know how dangerous paracetamol could be to your cirrhotic liver.

Keep us posted, be interested to know what they come up with for you

Laura x

[Annie2402 in reply to Laura009]

Thanks Laura. I used to work in gi/liver department so know my consultant very well and he knows I query every single tablet I'm prescribed. Had shingles few months ago and was told by out of hrs doc to take brufen despite already telling her I had liver cirhossis. No wonder I question everything

[Wass71 in reply to Hidden]

Hi Richard, I think medications is an individual thing, based on Dr's recommendation. What you were told or advised, may not be the same for others. I am on the transplant list now, but I was advised 2 years ago by the consultant Hepatologists that I can have paracetamol 1g, 3x per day. Each time my meds are discussed I tell them I take paracetamol as advised and they say that's fine.

Best wishes

XWassX

[Hidden in reply to Wass71]

I hear what your say Wass, my concerns were that the BMJ says that taking more then 1mg of paracetamol can cause liver damage. If someone is taking 2x500 mg tablets three times a day, then there is a very good chance that further liver damage will occur. A persons age may also be a factor: dtb.bmj.com/content/56/6/69

[Wass71 in reply to Hidden]

Sorry for tardy reply. I think the article actually says paracetamol is an acceptable first line treatment for mild to moderate pain (although may be less effective in certain conditions) . The main point of the article is that the cautions listed do not suggest a lower dose for the elderly and frail patients, those less than 50kg, and those with additional medications which could cause liver toxicity. They cited some studies but went on to say the quality of these studies weren't good. They make a point of saying liver problems from paracetamol are extremely rare. If you consider the amount of this drug that is taken by billions of people.

As always Dr's decide what and how much to prescribe based on risks v benefits. They even say( within the article), the danger of underdosing paracetamol might be that patients then may move to other drugs which cause more harm like nsaids, opioids etc. I don't think experienced Hepatologists (the one I see is a professor) would knowingly suggest the use of a drug that is as terrible as you suggest.

However if I was a frail 90 year old weighing less than 50kg taking loads of other drugs the article would be helpful in that it points out these cautions are included in the intrevenous paracetamol dosage instructions, but not the oral product. The MRHA are apparently reviewing the OTC medicines currently.

Thanks for posting the article.

Wass

Ps, unless I'm blind I didn't see the statement you quoted about 1g of paracetomol causing liver damage?? It does say this, which I have copied for accuracy.........

Box 1: Risk factors for liver damage with paracetamol overdose

Ingestion of 5g or more of paracetamol may lead to liver damage if the patient has risk factors, which include the following:

long-term use of carbamazepine, phenobarbitone, phenytoin, primidone, rifampicin, St John’s Wort or other drugs that induce liver enzymes;

regular consumption of ethanol in excess of recommended amounts; or

glutathione depletion (e.g. eating disorders, cystic fibrosis, HIV infection, starvation, cachexia).

[Wass71]

Hi Annie, have you had a dexa scan? A special scan that checks bone density. Liver disease can make it difficult to absorb fat soluble vitamins, so vit d can be low, which affects calcium. Having problems with vit d and calcium puts bones at risk of osteoporosis /osteopenia. So it's worth checking out.

I'm sorry I don't have any suggestions to help. I think keeping active is good. If it's too painful to walk how about trying swimming, at least that isn't weight bearing and may be kinder to your joints.

I hope you get some answers and some relief from pain. It's awful to suffer and have additional worries.

Best wishes

XWassX

[Annie2402 in reply to Wass71]

Thank you for this. I've asked for scans but until I break a bone they are not going to do any. Will do swimming once kids go back to school. Not my favourite past time but I will try anything

[Kristian]

Hi Annie

I used to have lots and lots of issues with joints. It was though pre-any sort of liver disease diagnosis, but having discussed this later in the course of the disease it may have been linked and could have been immune system related. I had PSC and also some form.of IBD, which joint issues are known to be associated with.

Like yourself though I never managed to get a diagnosis for the cause. The usual rheumatology blood tests all came back negative. The only thing that ever came up as abnormal positive was p-ANCA (AntiNeutrophil Cytoplasmic Antibodies). This is usually associated with vasculitis, however, usually only if associated with one of a couple of other enzymes. Neither of which showed up. However, it turns out p-ANCA also has a known association with some forms of IBD and for PSC. It isn't diagnostic of either though.

It was a very frustrating time and I never did get a final diagnosis. It did though ease off eventually. I think my body started to prefer the taste of my liver rather than my bones and tendons. So its not quite the same as what you are going through. I am though a little surprised that your docs wouldn't do a bone density scan to rule that out as a possible cause given your cirrhosis diagnosis. May be raise that with the rheumatologist when you do eventually get to see them.

Unfortunately, I also cant recommend any better pain relief. Clear the usual anti-inflammatory joint pain relievers are now out of the question. We cant take those. So, that does leaves us a bit limited. The advice you received from your doctor about taking no more than 6 usual strength paracetamol a day was the same as I got. I think my rheumatologist did prescribe me codeine for a period, but I think docs prefer not too if they can avoid it.

I'm sorry I've not been much help. Issues with joints and muscles are know with liver disease for numerous reasons. You may find you also have some form of IBD and not know it. That was the case for me.

Exercise wise, swimming is probably the best thing to do. It probably has the least strain for joints of any thing.

Good luck and hope you do get a diagnosis soon. Maybe speak to your doctor about referral to the pain management specialists at your hospital too.

[Annie2402]

Thanks Kristian. Sounds just like what I've got so hopefully as you say this will clear in time. Swimming sounds like best form of exercise but sooo expensive still it's worth a go

[Hidden]

Hi, Your Consultant says he hasn't heard of it. I to have Cirrhosis, compensated and suffer from joint/muscle pain in knees, elbow and more recently fingers. I just assume its down to the minor earlier signs of the illness. I haven't seen my Consultant since diagnosis but last time I did I had sciatica. He advised paracetamol only. I don't believe my GP understands so to be honest I suffer on and don't use anything. Ironic.

[Hdon]

Hi Annie, just curious as to what caused your cirrhosis? Reason I ask is Genetic Haemochromatosis (Iron Overload) can cause liver damage and cirrhosis if not diagnosed early enough and it can also cause quite debilitating arthritis as well. Have you ever had your iron levels checked?

[Annie2402 in reply to Hdon]

Hi hdon. My cirhossis I'm embarrassed to say was caused by too much alcohol.

[davianne]

Hi Annie, I recently damaged my knee,( a burst bursa) It caused a lot of swelling and pain, and my GP, knowing that I have cirrhosis, said that although ibuprofen is a no no, I could use ibuprofen gel, as it's topical. I also suffer with joint pain (osteoarthritis) like you, and apart from paracetamol, I use an electric heat pad, which eases the pain. My consultant says tramadol is ok with cirrhosis, but my GP won't prescribe it.I Hope this helps,

David

[Annie2402 in reply to davianne]

Thanks David. I have used voltarol previously but didn't find it made much difference. I cannot take codeine as I have HE as well so paracetamol is only thing open to me and I don't like taking it because of cirhossis. Swings and roundabouts really.

[davianne in reply to Annie2402]

Hi Annie, have you thought about amitriptyline. I take it every night to help with sleeping and my joint pain.

David

[Annie2402 in reply to davianne]

I haven't no. What is it a sedative or something?? A good night's sleep and some relief from pain for wee while would be fabulous. Will try get appt with gp but as everybody knows that's v difficult these days due to shortage of medical docs.

[ThreeSmiles in reply to Annie2402]

Annie - at ours you can either ring at or before starting time - which is usually hopeless - or go and stand outside the surgery before it opens (try to be first in queue 😀) and it works a treat - this method hasn’t failed me yet.

But of course you need preferably to live reasonably near the surgery and the receptionists must service people waiting early on in “the queuing process” 👍

[davianne in reply to Annie2402]

Hi Annie, It's a sedative, and also good for pain relief, I was first prescribed it for my anxiety and depression. Then, 2 years later, due to my poor sleeping due to my pain, my Hepatologist prescribed it for me. Some days, I can't wait to get to bed, after I've taken one to get a good night's sleep, and relief from my joint pain.

David

[Bulldog97]

Hi Annie,

I know you have been given lots of advice. I like you, suffer terribly with joint pain and stiffness, and like you was told it isn't due to cirrhosis ( that came out of the blue last October). I had X-rays with nothing to be seen to cause the pain and my bone density scan was ok and was put down to the muscles waisting and putting pressure on the joints.

I was referred to a neurologist last year for odd pains/pin and needles in feet and legs. After various tests it was decided there wasn't any nerve dammage so he requested some wide ranging bloods to look at mineral levels etc. (my GP refused to do them, so delayed things). Finally I got them at his hospital and it has come back with high copper and low zinc and is now sending me for further tests for Wilson's Disease ( there is a page on the Liver trust site) as a have simular symptoms, including joint pain. I am not trying to diagnose anything but might be worth a look.

As for relief I don't take pain meds for the joint pain but I have found cooking with ginger, turmeric and garlic (using cooked as little as palateable) help as they have natural anti-inflammatory properties.

As a general note looking closely at nutrition helped me go from a decompensating liver to a compensating one within a few months.

Hope my ramblings help. If nothing else it lets you know you are not suffering alone .

[Dibby1971]

Hello. I have been diagnosed PBC and I have awful pains especially in my feet and arms. Feet don’t feel like my own, numbness, tingling and painful.Once Iv sat down can hardly walk at all.Ok once I start moving and do around 10,000 steps a day at work.Have always worked on my feet and never had a problem. My hepatologist Consultant has said it’s not related to my liver problem and now waiting to see Rumatologist in a week or so. Iv been put on Gabapentin starting on low dose and was told can still have co codamol and ibrufren if need be.I can’t help you but it’s nice to hear someone feeling the same sometimes and your not alone. Xxx Try and see if you can bring your appointment forward for Rumatologist I did and was lucky. Xxx

[Annie2402 in reply to Dibby1971]

Thanks. Very helpful. I probably don't help as I don't like taking anything other than daily meds prescribed my consultant so struggle with taking paracetamol even. Good on you BTW for continuing to work. Don't know how u do it. I was medically retired from NHS and can see now that I woykd have been sacked otherwise x

[Dibby1971 in reply to Annie2402]

I don’t know how I do it tbh it is soo hard and totally wiped when I finish and it’s full time too but can’t afford to do less. I also work for NHS as Health care assistant so it’s very full on. I hate taking medication I’m on large amount of URSO and only just started taking it and will have to forever. If the pain was sorted I’d be so thankful it’s so hard living with pain all the time. I also have Collitis so it hard.Try and stay positive as hard as it is and rest and go with your body.Really try to bring that appointment forward. I too had negative for Arthritis and not happy being on lots of pain relief but not knowing what’s wrong. All the best to you xx

[Beefeater]

Hi Annie2402. The joints and other pains are part of the liver issue. Recently my thumb stays bent unless I straighten it wit other hand. I also gently massage the joint. Try to exercise your fingers by squeezing tennis balls. At least it will prevent your fingers from further stiffness. Hope it helps. Beefeater

[Annie2402]

I've had that with fingers. It feels like they kind of lock until I manually straighten them. Will try the tennis ball thing tho as I struggle to open jars etc at moment. Thanks for advice

Annie

[davianne in reply to Annie2402]

Annie & Beefeater, that's amazing !!! I too have issues with my fingers locking up, and I thought I was going mad😥😥😥. I thought it might be neurological, as I do have peripheral neuropathy in my feet and in some fingers . I have no feelings, just pins & needles. Do either of you know what is causing the lock ups on my thumb and forefinger? I have to use the other hand to release the grip......very worrying.

David