Leg cramps

[fizzix50]

Has anyone had problems with painful leg cramps in the night - if so does anyone have any tips and tricks on how to avoid/treat this? OH seems to be getting these fairly regularly despite taking all meds etc. I know it is an electrolyte imbalance, and you potentially need to increase your water intake if you over-exert.....

[RodeoJoe]

Yes I used to get this too. Post transplant now so no longer an issue. However I now cycle a lot and find the best thing to avoid cramping is something like this

amazon.co.uk/High5-Zero-Ele...

There are various brand's and you can get these and others in somewhere like Halfords.

[LAJ123]

Good morning fizzix50,

I had severe cramps in my lower legs and feet. Same as with RodeoJoe, mine stopped immediately post transplant, so it almost certainly seems to be liver disease related.

I tried the usual, over the counter medication such as Crampex and magnesium tablets but nothing was very effective.

Apart from the cramps, how else is he doing ? I know from your previous posts that combined with end stage liver disease, he is having difficulties in staying off alcohol.

I hope that is now under control as its hard to see how things can improve without certain changes in life style. Just help him to follow a good and varied diet, exercise and most importantly no alcohol, not reduced but none at all.

In the meantime make sure that you also take care of yourself. I know from experience that its extremely hard for those doing the caring and sometimes they get forgotten amidst the worry about the person with the illness.

Take care,

Jim

[fizzix50 in reply to LAJ123]

Sadly Jim he seems unable to stay off the alcohol. He is now down to 9st 2 (from 12 st) and has just come out of hospital after his 4th GI bleed. I think I have finally accepted (obviously a slow learner) there is nothing I can do for him until he decides he wants to give up drinking except to treat him with compassion, dignity and respect - not always easy but I am trying. I am going to a hypnotherapist today, not so much to alleviate the anxiety around always being on call, always worried about the next hospital admission, but to give me some skills to cope with that. I usually end up not eating, or eating rubbish, or having a drink myself, or just in a snivelling heap in a corner, and I need to stop responding in that way for my own sanity. After 35 years of marriage I still love him. He is not a bad person but he is ill. This is the only way I can come to terms with it.

[catrinamakes in reply to fizzix50]

There is always hope . I have been married 39 years and was a drinker until 6 years ago ,I had organ failure and wasnt expected to live for 4 months . Spent a lot of time in hospital and now left with cirrhosis , severe osteoporosis and I'm tube fed. My husband was so supportive, and tried all sorts of things to help me ,but the desire to drink was stronger. Came out of hospital after 5 months and the first thing I wanted was a drink , and i did have a few secret ones. But in the end i went to AA out of desperation , went a couple of months didn't really engage with them but i got a lot out of it and then I had couselling (when I had to wait so long on the nhs i paid for it) . I dont drink any more(6 years) . I now have a good life which i had to build up again from a physical emotional wreck. I now value every thing what he tried to do to help me , but it didnt work . I had to learn a hard lesson my self. You need to look after yourself, as you need to be there when he ready. What I'm trying to say is that there is always hope. I value our time together so much more and i wont drink again as i want to live. My thought are with you, be strong, and im sure everyone on this site will be routing for you both . I wish you both health and happiness in the future.

[Mel2637 in reply to fizzix50]

I have never been a drinker but i know people who are and it is very hard to get away from. I smoke and i know how hard that is to stop and i haven't been able to quit yet. I know it is one day at a time and nothing helps until he is ready to quit. It must be harder with a liver problem too. I will keep him in my prayers.

[fizzix50 in reply to Mel2637]

Thank you

[Louisepeters in reply to LAJ123]

I have severe cramps in hands, legs from feet to the groins. Always at night and am nights on end just up all the time. Feet are throbbing and burning continuously (24/7) and here it comes.......... It didn't start until after my liver transplant 2009 !!!! Have been for all kinds of tests and been given many different medications. Nothing has helped until yet. This week the doctor put me on quinine ( says in the leaflet with the medication, tell your doctor if you are taking certain medicines. CYCLOSPORINE being one of them ) this is my anti-rejection medication, but the doctor said it should be OK. I am desperate now, the weekends are the worse and I don't get a wink of sleep on a Saturday. I end up cleaning the kitchen, being able to stand on a cold floor. Sounds dramatic but sometimes when the cramps are at their worse. Calves, feet and groins all at the same time, I cannot even move to seek relief. I just want to die. As I say, this started AFTER the Transplant. H E L P !!!

[LAJ123]

Fizzix50,

Are there any liver support groups near to where you live ? I don't mean alcohol support groups, there are plenty of those around.

I'm wondering if it could help if you were to meet people in the same situation as you. This forum is brilliant for information and support but sometimes a face to face conversation helps.

Often I hear those like your husband and yourself in despair of what to do next when perhaps meeting others who have survived and are doing well is what is needed.

Have a look on the British Liver Trust website for the list of support groups around the country. Some are for specific liver illnesses but there are some for general support for anybody with liver disease.

I've just read 'Clares story' which is inspiring. Also, my liver disease was alcohol related and I've survived by being fortunate enough to receive a donated liver. So please don't think all is lost because that's not true. There is always hope.

Jim

britishlivertrust.org.uk/st...

britishlivertrust.org.uk/li...

[fizzix50]

How long were you abstinent before they would consider you for transplant? My fear is that he will run out of time, even if he does decide to give up.... thanks for your words of support and encouragement. It means a lot.

[RodeoJoe in reply to fizzix50]

I'm pretty certain that 6 months is the absolute minimum. There are cases where even after six months transplant is not considered but I've never heard of a case before the six months mark.

[AyrshireK in reply to RodeoJoe]

6 months abstinence minimum before a person will be assessed. During the assessment their mental health is assessed too and they take a careful look at their compliance history (some centres demand attendence at counselling etc). Before they can be listed they have to sign a pledge of life long abstinence to protect the new liver and once a person is listed they will be subject to random tests and if found to have lapsed whilst listed it is a straight removal from the list.

[LAJ123]

After my initial diagnosis and spontaneous bacterial peritonitis ( this is when the fluid (ascites) within the abdomen becomes infected) I was too ill to even consider drinking. By the time I was referred for a transplant assessment I had been alcohol free for well over six months. I told them that I had no intention of ever drinking again.

However, my centre still insisted that I attend alcohol counselling as a condition of being listed. As Kate said, mental health evaluation is crucial. People drink for lots of different reasons. So I had to have a psychiatric evaluation to make sure the root cause was not going to cause a relapse post transplant.

My last drink was on my birthday and I didn't manage to finish it.. I was discharged post transplant one year later - also on my birthday.

They do not make it easy.

[fizzix50 in reply to LAJ123]

I am so pleased for you that you have a new life; unfortunately OH has told them on many occasions he doesn't want to see the A&D team or do counselling; you are so right, people drink for lots of reasons, none of them for pleasure I believe (at least not for addicts). It is a form of self medication to cope with all kinds of personal demons, which is why I feel so for anyone with such an addiction. I can't believe his family's attitude "his choice his death" which to a degree is true, but they have done nothing to support him or make him believe in his self worth. I just hope if the worst happens they can live with their self satisfied and ignorant beliefs. I can understand why they don't make it easy - more people than organs available and they have to ensure the one who gets it has the best chance of survival, totally totally get that. Am just sad I don't think my OH will fit into that category....

[Brummi]

Certainly do!. I slide off the bed , then dance like a Maori untill my circulation returns.