cramping and pain with cirrhosis

Hi, my son is 42 and has stage 4 cirrhosis plus Hep C. We are waiting to see if he is eligible for the Hep C treatment. He goes every other week for paracentesis the drain 11 litres or 2 quarts each time. Recently he has had sever cramping in his hands and feet to the point of it bringing him to tears. Also suffering sever pain in his stomach and right side when laying down. He is getting very little sleep because of this. Any suggestions on how to help with the cramping and for him to get comfortable enough to sleep. He has been hospitalized several times for blood transfusions and once for H.E.. He was rushed to the hospital for surgery on a hernia in which his small bowel got caught. He was in a H.E. coma for a week. With high doses of lactulose he finally came round. Any help or suggestions would be greatly appreciated. Thank Soonie

18 Replies

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  • As regards the cramping this is most likely due to some mineral deficiency in his system so should be mentioned at next consultation in case they can run tests and advise/prescribe a supplement.

    Some folks on the Auto-Immune Hepatitis forum swaar by having a glass of tonic water before bed (my mum & Grandma also swore by it). Might be worth a try. I believe it is the small quinine content which helps with cramp. I think quinine tablets are also available however these 'remedies' should only be done with doctor approval since quinine itself can cause all sorts of unwanted side effects.

    Check this one out with consultants.

    Katie x

  • I had hep c with stage 4 cirrhosis and the cramping you speak of. It is some kind of lack of electrolytes or such that the brain is experiencing. Have you spoken to his doctors? The craming that seriously can precede a varcies bleed out. I have had all my limbs gnarl so hortibly I cried trying to straighten them. This occured for a long time before my bleed out. I had to be taken off Spironolacatone because I was losing too much potassium salts. What is he eating? He really should be avoiding anything and everything processed. The liver cannot throw off the toxins from meat, dairy, processed foods. I am 64, had hep c since age 21, two treatments, 2nd one at age 62 killed the virus. I can still cycle 40 miles in hot sun, I swim lots and do rhythm gymnastics. He is still young, he can get better. He must change his lifestyle so he places his health at the top of his list in life every single day. He needs rest, exercise, healthy food and you both can have faith he will improve. Call his doctors about the cramping. Is he on any meds? Good luck.

  • I was wondering if because he's having regular drains and is prob on diuretics if his sodium levels are low. This happens when the body is losing a lot of fluid, it's called hyponatremia and results in a lot of the symptoms your talking about especially cramping. It might be worth a blood test to check. x

  • Thanks for replying, my son is not on diuretics because of kidney problems at one point his kidney function was 18% it is now at 50%. also on a low salt diet. I am hoping when he sees the nephrologist his kidney function is a bit better and maybe go on a diuretic. He had his belly tapped yesterday and they got 9 litres most time it is 11 litres or 2 gallons. Today his belly seems as big as it was before the tapping. Not sure how to help him other than being there. it is so very frustrating to see him so uncomfortable I can`t imagine how he is feeling or thinking.

    thanks again

    take care

    Susan

  • What a shame, sadly my partner recently died of cirrhosis but he suffered badly from cramps. Seemingly it was thrombosis, he wore pressure stockings and had a heat pad and lamp which helped. The cramps reduced him to tears too but heat helped.

    I hope your son stabilises and is more comfortable and I send my love to you too

  • Is your son in the UK ?? if so he is entitled to be treated ASAP for his advanced liver disease. .they give priority to people that have Hep C and cirrhosis. .he should be offered the latest drugs to eradicate his Hep C as soon as possible!

    As soon as he starts treatment things should improve very quickly ..I had cirrhosis stage 4 and got treated with Harvoni. .my leg cramps and symtoms have improved significantly since I finished my 12wk course of treatment

    I am awaiting my 3mth blood test to see if my virus is gone for good but so far I'm undetected.

    Please push for treatment for your son ASAP as it's his right to be treated!

  • We live in Ontario Canada the treatment for Hep C not everyone is eligible for it. It is very costly $50,000 his hepatologist is fighting for him to get it. It has gone untreated since February 2015 so how much that has helped damage his liver we don`t know. His ascites seems to be getting worse he gets tapped every two weeks and they drain up to 11 litres or 2 gallons. He was drained yesterday and this morning his stomach is huge again. He can`t take diuretics because of his kidney function but has limited his fluid intake to 8 cups a day and is on a low salt diet. It is so very frustrating and emotional for him and myself. I guess it is one day at time with lots of prayer.

    Thanks so much

    take care

    Susan

  • Hi Susan. I live in Ontario Canada also. My brother has cirrohis also. Had hep c also but is just waiting for the test to say he is clear. His doctor has said it but needs to come from his liver Doctor. He was on harvoni for 12 weeks. I know how u are feeling as my brother is 41 and still lives at home with my parents. If u need to talk my email is shellydelyzer@yahoo.ca

    Sending lots of love to you guys. ❤️

  • I had these cramps too ,I am stage 4 and HAD hep C I finished treatment last dec 2015 and am clear of the virus at 61. I am on diuretics and they take out potassium ,sodium and other electrolytes . I do drink a tonic water at night (for the quinine) and making sure I am not dehydrated , because the diuretic make you dehydrated as well as getting rid of all the ascites . they have eased up a lot since I got rid of the virus.. Talk to your doctor ,write a list of questions for him /her and ask away .It is his health and he has to be an advocate for himself .. Glad he has you too

    Good luck

  • I live in Canada and getting the Hep C treatment is not available to everyone. His Hepatologist is fighting to get it for him. It is very costly $50,000 dollars they say. He is not on a diuretic at this time because of his kidney function so the fluid tends to build up quicker. He is on a low salt diet and limits his fluid intake to 8 glasses a day. He was tapped yesterday and they removed 11 litres or 2 gallons. He stomach today seems just as big as it was before he got tapped. We see his Hepatologist next week hope he has the answer we want to hear.

    Thanks for the reply and information

    Susan

  • Awww that's bad sooner. .push hard to get him treated. .they must realise that going for a transplant is much more costly than treatment to cure your son!

    The new treatments are very effective in stopping the virus in it's tracks..when the virus is cleared the symtoms of liver failure get better very quickly. .after a while the liver can and does in some cases reverse the cirrhosis. .although he will need life long follow up but can get back to a near normal life when he's cured!

  • Thanks ballie52, yes it does cost more with his hospital stays and blood transfusions than the treatment of the Hep C. Right now his only hope of survival is a liver transplant. It is an uphill battle but I have my hiking boots on to help him climb if he needs me.

    take care

  • Did they say that soonie!..as I know a friend that has had accites and bad kidney function as well as been banded so many times..he is now on treatment and making good progress having cleared then virus!

    I hope whatever they decide they move forward as fast as they can to sort all these problems out for your son..sending postive thoughts your way Xx

  • Hi there!

    So sorry to hear about your sons pain. I get terrible pain from my ascites. Ascites, the fluid, will push the organs out of place as the fluid tries to go everywhere and anywhere. I've had to take pain killers. Is there any reason he can't? Normally the GP handles that part. I t can also help with rest. It is miserable, not sleeping because your in pain. I have to pad my sides with soft pillows when I get very full.

    The cramping sounds like a lack of potassium. Can he have orange juice? Or does he like bananas? They might be able to give him a supplement for that. Also, water. And a low sodium diet. That's just my opinion of what it might be. The liver effects so very much! We don't realize it.

    If he needs pain medication, they can start him off on something for even just at night to sleep.

    Ascites brought me to my knees. For me, it was the worst part of liver disease. I'll be glad when it's gone.

    I'm on the Lactulouse also!

    Cheering you on & thinking a good thought!

    xxxxxx

    Kimberly

  • Kimberly, thanks for the reply. He had low potassium before and had to take pills for 5 days. The one problem is he can't take diuretics because of his kidney function. At one point his kidney function was at 18% it is now at 50%. He is on a low salt diet but the ascites seems to be getting worse He gets tapped every two weeks and they get up to 11 litres or 2 gallons. He was tapped yesterday and today his stomach is huge again. He has trouble eating so I try to get him to eat small meals. He has a follow up with his hepatologist next week will go form there

    Thanks so much

    xxx Susan

  • Thanks for the reply, he eats oranges and bananas and is on a low sodium diet. As for pain medication his family doctor tells him to take Tylenol extra strength. That doesn't always work because of his past history of drug abuse the doctor is reluctant to give him anything else. Hopefully he will qualify for the Hep C medication I hope that can help somewhat. He was diagnosed 3 years ago with cirrhosis but continued to drink heavily. Been hospitalized several times with different infections almost lost him those times. I think he has given up says he is tired of fighting and staying sick. He has lost so much weight that you can count the bones in his spine. There is no fat anywhere on his body. The ascites he can't seem to keep up with. He was tapped this past Friday they got 10 litres I had to take him to the hospital Sunday night they got another 5 and 5 more on Monday. It is certainly an emotional roller coaster for all involved. Plus he gets very angry and verbally abusive with me. I now leave the situation as I believe he is scared and angry at himself and the whole thing. Just take it a day at a time and pray. sorry for the rant

    take care my friend and thanks so much

    xxxx

  • The Family Doctor? Tylenol? Extra Strength? Thats a bit surprising, because with Liver Disease are told NOT to take Tylenol. Period. Because it's so bad for your liver? Please speak to his specialist about that. I'm very surprised to hear that!

    Also, with all that fluid..his bursts of rage, etc..is all of that normal? There is a serious illness/side effect, HE ( Hepatic encephalopathy) that can occur with Ascites. It can look like being disoriented, early onset dementia, serious moods swings, anger, etc. Normally Latalouse is prescribed to help with that. .

    Also, Supplements and supplemental drinks, like ensure are often given to patients with ascites, to help with the food. If he is that skinny under the fluid, it just sounds like something is being missed here.

    How often are you seeing a specialist? You said Tylenol..

    Please ask your GP or preferable your consultant..

    Why is he on Tylenol? and not Advil, or something else.

    2. What about supplements for his health and nourishment.

    3. Does he have HE ?

    By the way..your son should DEF. meet all the requirements for the Hep C treatment. In fact, it sounds like he is getting really ill. Not to frighten you..but all these drains, the terrible thinness? Sighs. I was there. Drained every 10 days, extremely thin underneath. That's when I got my transplant.

    Even if he IS still drinking, they should especially be watching this stuff. Sadly, yes, getting medication if he needs it, for pain especially can be hard..but don't be afraid to be his advocate. People might tell you it does not hurt, and for some, I guess it does not..but I had and still have ascites after my transplant. I was in extreme pain. I still get it. The fluid pushes up in places that cause the organs to move,. ALSO, there is a fibrous texture on the outside of the liver. When the liver swells, this tightly woven outside part stretches, and THAT can cause pain. In the belly, pain is often communicated in different areas. In other words, your pancreas may have issues, the pain from it is showing up on the other side of the body. Its the only part of the body that does this..the belly. But ascites , the fluid squeezes into any place it can in all four quadrants. They is also cramping after the drain, as the organs are trying to find their way back to their correct places.

    Again, I'm no doctor, but any info I am sharing about ascites and pain has all been passed to me by my specialists.

    Sorry if you've answered these and I've missed it. the string for your post got a bit longer, and I got a little confused about who was speaking! lol. I just wanted to add a few things while I thinking of them. I cant take the diuretics anymore either, because my kidneys aren't so great either!

    Anyway! I'm thinking of you..please let me know how it goes, ok?

    I know this time is very hard..Just know we're here. We don't want you to feel alone!

    cheering you on!

    kimberly

  • Get red cell Mg checked asap

    Serum Mg is meaningless other than if it is low then RBC Mg is almost bound to be low

    Mg controls 348 known enzyme reaction in the liver alone, so it seems fundamentally important - and is VERY common deficiency. Probably the caiuse of the cramps. My K has always been good but I was plagued with cramps until I got them to check Mg and deal with it.

    Also, excess K is cardiotoxic so be careful taking K unless you are regularly monitored.

    Also get vitD25 status checked, as well as vit k for clotting factor 7.

    Adrenal function as well.

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