New symptoms?

[Health_matters1977]

Hello,

Hope everyone is doing/has done well today.

I’m doing okay - a little lacking in energy but fear I may have a new cirrhosis-related symptom, though it could be unrelated. I can’t see my GP for a week or so (am away) so wondered if anyone else had experienced a sort of arthritic pain. It’s bad in my hands, feet and ankles so walking can be sore and moving my hands (opening jars a no go at the mo for example) is particularly painful 😖

I do appreciate you’re not docs and I will see mine for sure but just thought someone may have some words of wisdom in the meantime. Hopefully!

Many thanks 🙏

Beth.

[LAJ123]

Hello Beth,

Your aches and pains are very familiar to me. When I was waiting for my transplant, my symptoms were, extreme and overwhelming fatigue combined with muscle weakness and not just aching but painful joints. The affected joints were the hips and hands. Moving was difficult and getting out of a chair was really hard work.

A funny story, although not at the time, while being assessed for a transplant I was put up in a hotel near to the hospital. It was made clear that being on time for the daily appointments was very important. I almost didn't make it to my first appointment on the first day because I decided to have a bath after my wife had left. Because of the above symptoms, I got stuck in the bath with the mobile phone in the bedroom. Took me a very uncomfortable and panic stricken 45 minutes to get out in order to just make it in time.

Just make sure that when you do get to see your GP, you have a full written list of all of your symptom so that maybe something can be done to make life a bit easier.

In the meantime, take care.

Jim

[Health_matters1977 in reply to LAJ123]

Thank you Jim. That’s kind of you to reply. Goodness though 45 minutes getting out of the bath must have been some ordeal - and why do these things seem to happen when you really need to be somewhere...? You sound like you maintained your sense of humour throughout - so important when these things get sent to try us!

I certainly will make a list for my GP - and I’m seeing my consultant again in September which will be the second appointment since hospital. He did ask if I had any questions last time and I couldn’t think of any because I was so very in the dark about what was going on with my body, but I have learnt so much from reading on here that I think he will be sorry when he asks next time...

I think my naievety was needed at the time but now it’s sunk in a bit more I need to be more aware of what’s what.

Thanks again and take care,

Beth.

[Bermuda1]

I had his and it can relate to low minerals . Magnesium in particular . I take aCa,chum Magnesium And Zinc supplement , which my consultant has agreed to as long as I stay within the recommended adult dosage . No more pains and no cramps . Been taking them for nearly 4 years , every so often I try not taking them for a few weeks , and within a couple of weeks I am back to the same old problems. Always check with your medical team in regard to supplements.

[Health_matters1977 in reply to Bermuda1]

Thank you for replying - much appreciated. I did wonder about magnesium and zinc. I’ve been looking at ways to increase both through food but will certainly ask my GP. It was so strange, nothing like it for five months since diagnosis and then all of a sudden this burning joint pain...I’m glad to hear you’re managing yours and hope I’ll be able to do the same.

Thanks again and take care,

Beth.

[Porphyriamaniac]

Hi Beth, have you had an iron panel blood test done? The reason I ask is arthritis, particularly in the hands can be a symptom of iron overload or haemochromatosis. Liver disease by itself can also make your ferritin levels high and cause an iron overload which isn't a great thing for anyone. My joints are killing me lately and my iron levels are through the roof. Just something to consider with it being a new symptom, might be worth looking into and asking gp. All the best to you. Xxx

[Health_matters1977 in reply to Porphyriamaniac]

I haven't recently but I think I need one - this sounds like it could be the case as they have me on very high doses of iron (when I was anaemic at the very beginning of all this) so maybe my body is telling me that I am getting enough without the supplements. I will surely ask - don't want to be causing any more damage. Thank you so much for the info - and I am very sorry to hear you are also in pain, I hope it goes away soon. It's very frustrating as I now have energy (first time in a while) and want to get on and do things but the pain - even getting up first thing and walking - takes such a long time - and it hurts! Take care of yourself xxx

[Porphyriamaniac in reply to Health_matters1977]

It's worth a look, esp if you're on iron supplements. I don't know whether mines down to the iron loading or just arthritis but it bloody hurts either way. I'm glad you've more energy despite the pain though at least that's something. Keep us posted as to how you get on, take care. Xxx

[Health_matters1977 in reply to Porphyriamaniac]

Yes, I certainly will keep you posted. It's amazing all these side-effects you can get - as if having a malfunctioning liver wasn't enough! but hopefully I can get to the bottom of it. I just feel like I'm clicking and, as you say, in an arthritic type of agony constantly. I think the other thing I find unsettling is all the things you think you are doing right could actually be the wrong thing! Diet is my next concern - not because I am losing any more weight but because my body shape changed so dramatically and I am having to eat four times as much as I used to just to keep functioning. To think how naive I was when all this started!! I hope your pain eases soon too, I really do sympathise, xxx

[Hidden]

Hi

All of my joints were really bad i was diagnosed , and after, u was then diagnosed with fibromyalgia to make matters worse!!! Please take care. Love and hugs to you all Lynne xxxx

[Health_matters1977 in reply to Hidden]

I am sorry to hear that Lynne - what a lot to deal with. So kind of you to reply and I hope you feel better soon. We just have to keep ploughing on don't we? xxx

[scampi2122]

I too suffer from stiffness aches and pains in joints and muscles, (I have cirrhosis), I cannot get an answer from anyone. My bloods are normal and show no markers for arthritis, neither my GP or consultant have an explanation. It is annoying and I have had them for over a year, l am going for some blood tests for B!2 and Vit D, I will let you know if I get any answers.

[Health_matters1977]

There are a lot of things that people can't seem to get to the bottom of, I am sure, like me you sometimes feel like a bit of an enigma to the doctors. Some things have been absolutely fine for me (platelets being normal just did not compute with my consultant) and I've not really had much pain until the joints. I am going to follow up on the iron that was mentioned to me above but I would be very interested to hear about your results, if you are happy to share. Thanks so much for replying and take care