Crazy Night Time Leg Cramps with Hepatitis C

Crazy Night Time Leg Cramps with Hepatitis C

leg cramp cartoon liverPainful leg cramps are one of the craziest things you will ever endure. Not only are they ultra humiliating, there is nothing in the whole world you can do about it. They seem to strike when you are deep in REM sleep leaving you in the most vulnerable position ever. I cannot think of a simpler way to describe it: You kind of go insane for a while. While the story is usually funny the next day, it is never ever funny while it is happening. Once again, I am probably the extreme. I have End Stage Liver Disease. or cirrhosis from Hepatitis C and when my body becomes imbalanced or my muscles are overexerted, the leg cramps I have experienced are pure craziness. Leg cramps

I have had them for years. Little did I know that they were one of many signs that my liver was failing. At one point, internet advice had me keeping a bag of tortilla chips beside my bed along with a large bottle of water. When I felt that stab starting, I would guzzle water and cram chips into my mouth. Literally, I crammed them in. Sometimes the muscle spasms lasted off and on for up to an hour. I have tried everything in the book and, you guessed it – You’re going to hear about all the causes and cures for leg cramps that work and some that don’t. I am saving the best for last.

First, I have to tell this story. One time I was hosting a foreign exchange student from Italy when a leg cramp hit. She had been with me for about a month. We were sitting in the living room watching a movie. It was her absolute favorite thing to do on a Friday night. That is because in her country, all the American films were voiced over by Italian actors. Their words did not match their lips! Martina loved hearing Brad Pitt, Johnny Depp, and Angelina Joie’s real voice. So she was thrilled to settle in for a big salad and home-made pasta. You bet I let her cook! Mama Mia!

About an hour in, I threw my leg up on the coffee table and begged her to pull my toes toward my face. She thought she misunderstood me and just stared for a moment. “Please!” I begged her, “pull my toes!” She willingly obliged as I screamed out orders like, “Harder! No! To the left. Grab my pinkie. Hurry!”

I promise you this went on for over 30 minutes. I would tell her to go get chips and water. I  spilled it down myself in my agitation and pain while yelling, “More! Hurry!”  That poor girl was so upset and confused that she was in no mood for a movie after that. She spent the rest of the evening in her room on the cell phone to her parents.

Before you judge me, if you have never had severe leg cramps you have NO idea what I am talking about. This blog is for those who have endured severe, long lasting legs and feet cramping in pain. I have given birth using the Lamaze Method with no medication. The leg cramps that can come on when your body is out of whack is like a level 10 contraction that does NOT end. Calm and focused breathing with a contracting uterus is no match for a twisted up muscle in your leg. There is NO calm and NO control.

leg cramp massage

Tame this!

After being diagnosed with Hepatitis C and cirrhosis, I came to a better understanding of the connection. I did more internet research and put a bar of soap under the bottom sheet at the foot of my bed. Honestly? Is that the best advice on the internet? I was on high doses of diuretics like Lasix and Spironolactone and was told that they may contribute to the fluid and mineral imbalance that included ascites.

My doctor was awesome, but he kind of shrugged it off. I was decompensated and he had bigger things to think about, I guess. I was thoroughly confused.

During Hepatitis C Treatment with Incivik, Ribavirin, and Interferon the cramps multiplied. They came nightly and even started earlier in the evening. I hated for my grandchildren to see me contort in pain. My toes would point off in strange directions. Many times it gripped me all the way up to my butt. I had zero control. Any attempt to stand and walk it off left me on the floor yelling, “Grab my toes!” With one bad cramp, my daughter, who is 5’2” decided she was going to untwist that leg. She wrapped her arms around me up to the knee and started wrestling my leg.

My oldest granddaughter came in after about 20 minutes. (Nana was getting loud with this one) She went to work on the toes. “Twist it! Yank hard!” I called out. I ended up in the floor and they dragged me all over the living room. We got so tickled that we finally gave up. I howled with laughter and pain at the same time. My daughter, in her wisdom, got the bottle of Xanax and gave me a whole one. I washed it down with tonic water. It only took a short time and I was out like a light. They still tease me about that one. Talk about scarring your little one’s mind while you’re on Hepatitis C Treatment. Poor kids.

In all of my research through the years, I have never found a satisfactory answer. Sure, there are lots of theories, but some differ from others. I will simply list the causes and cures, or home remedies in no specific order.

Causes of Leg Cramps

Physical Exertion – When I walk/run are the worst nights. I have always fought shin splints and the leg cramps take those to a whole new level.

Mineral Depletion – Low magnesium, sodium, and potassium can cause leg cramps.

Dehydration – If you do not give your muscles enough water, they will tighten and cramp up. This is so true while treating or on any medication. Diuretics help ascites, but they can increase leg cramps.

Poor Support from Shoes – I love heels. But if I wear a 3 hour shoe for 8 hours, my legs are going to cramp. It also helps to wear a well designed running shoe. Try to avoid too many hours barefooted or in flip flops. A low, encased, stable heel can indeed reduce leg cramps.

Remedy

Bar of Soap – I decided to put this so that if it does not make your leg cramps go away, you can use it to wash your mouth out if you cuss your way through them. I read on the internet that if you put a bar of soap under the sheet at the foot of the bed it would help. My brainiac friend confirmed this to me by talking about reducing static electricity and thereby… blah blah blah. I used it for about a year. Who knows? I was trying other stuff and did not discount this entirely.

bar soap leg cramps

Thank God I’m a country girl remedy

Food – Spinach, yogurt, avocados, salmon, and bananas are all good sources of potassium. Dark chocolate, bran, almonds, seeds, and dried culinary herbs all contain a lot of magnesium. Many of these foods are part of my daily diet. Food sources of vitamins tend to be more readily available for your body to use. These foods are easy to find and a quick source of minerals. You probably already eat them as part of a liver loving diet!

Stretching – I honestly feel that beginning and ending my day with a few slight stretches has helped as much as anything for slight leg cramps. I lean against the bed and even stretch around before I get up. When I am in the middle of a cramp, if I can get up to walk and stretch, it helps. Be careful, because sometimes it can bring one on or make it worse. Been there.

Quinine – My transplant doctor said that tonic water with quinine was fine for use during treatment. They ran sodium levels on me and said mine was low. Well, of course my sodium was low. I was eating low sodium to avoid water retention. My feet and legs were swelling and I was on diuretics! Yet, I was having severe leg cramps nightly for months during Hepatitis C treatment. If you can figure that mess out, by all means, go right ahead. But I kept the tonic water in my little bedside basket. I used it to wash down the Xanax during treatment. On this remedy – Talk to the doctor. This was one of those middle of the night internet reading binges that created fear and anxiety. Some sites said quinine killed their cousin through liver failure. Others said they had a prescription from their liver doctor. If you ask me? Stay away from those sites and ask YOUR doctor about quinine. quinine tonic cramp hepatitis liver

Water – Enough said. Please read my blog on drinking water. It is essential for everything, including leg cramps.

mineral drops leg cramps liver

Mineral Supplements – My doctor was so strict about vitamins when I was first diagnosed that he refused to let me take any. I occasionally use Mineral drops before I go to bed. They taste awful, but deliver a great dosage and are safe. This is especially true when I have walked or ran that day. My leg cramps are less frequent, less severe, and shorter in duration when I use the mineral supplement. You may try an oral dose with your regular vitamin. I was a hard case and my multi with minerals did not help. Talk to your doctor.

Coconut Water – This is my new miracle. I have not even finished the blog on the benefits of coconut water. But let me say this: I am training for a 5 K run/walk at least once a week. It is the only night I get leg cramps. For the last 6 weeks I have drank 16 oz of coconut water immediately after my run and have not had a leg cramp during that time. It is the longest I have gone without a leg cramp in several years. Watch for my post on this. I think it is angel’s juice. It’s a miracle!! Let’s make a Hallmark movie! I am not kidding.

There is nothing worse than being awakened by a leg cramps. It is startling. All of this talk about tonic water, quinine, and soap under the bed are old wives tales. That tells us that leg cramps have been experienced by many people over the years. I have found what works for now. I really hope that one or all of these tips will be useful for you.

I do not think that a large percentage of people have them. But if even one person benefits this blog, it needs to be posted. That is my motto. I am here for you when your legs cramp up or whatever else you find yourself suffering from while dealing with Hepatitis C or cirrhosis. I would grab your foot and yank on your toe if you needed me to. I mean that. Karen:)

I also have hand cramps recently – My Youtube video about Hand Yoga shows you how to do the exercise that brings relief. I am not sure if I want to show the legs.. Haha! We’ll see. Check it out. xo

leg cramps liver hepatitis

Crazy Night Time Leg Cramps with Hepatitis C Pics via shannonmillerlifestyle.com, latestcrazynews.blogspot.com, Wikipedia, invisiblecows.com, peoplespharmacy.com

22 thoughts on “Crazy Night Time Leg Cramps with Hepatitis C

  1. I don’t believe my eye. if we claim something we got to make some research on the subject. The leg cramps are related to Vasculitis or Cryoglobulinaemia. I had them all the time , but as soon as i started the triple it instantly went away. So …. Definition of Vasculitis …..
    By Mayo Clinic staff – Vasculitis is an inflammation of your blood vessels. Vasculitis causes changes in the walls of your blood vessels, including thickening, weakening, narrowing and scarring. Narrowing the vessels mean cuts the circulation….and the cramps are relentless in any given time.
    For entire definition, go to Mayo Clinic Website.

    1. Hi! Thanks for providing the definition of Vasculitis. I am really happy to hear that your leg cramps are totally gone!They can be relentless in many cases. I didn’t post the entire definition, but people can see your response and google it. Thank you again for taking the time to put the info out there. xo Karen:)

  2. Thank you soooo much for this info! I never connected these permanent “charlie horses” in my calves and hamstrings, and chronic foot, toe and achilles cramps to Hep C. I’ve asked, and was told no, it’s not from that (one doc did say that pins and needles in your hands especially at night in bed are common). I’ve been told it’s not from arthritis and not from mineral imbalance either.

    I do know EXACTLY what you mean about the pulling – it’s a wonder my toes aren’t as long as my fingers by now. I have no one around to ‘pull me’ when my calf or hamstring so it’s a real nightmare (day-mare too) trying to stretch them out. I am going to look for those mineral drops, tho, and maybe make a smoothie or something with a few ounces of coconut water om the evening.

    Currently, the family doc has prescribed muscle relaxer Baclofen – helps a bit at night but it NOT a cure by a long shot – can’t take it during the day. A physiatrist I’ve been referred to has prescribed 200 mg of quinine in the morning, and the Baclofen at night. It’s only been a week, but I think the cramps are lessening. I’d cross my fingers – but I’m afraid they’ll cramp too…

    1. Hi!

      LOL! I hear you! It’s always funnier in the telling, isn’t it?

      My hands have cramped too! The quinine helped some. I haven’t had them in weeks except after I run. One thing that may be the best trick yet is to drink MORE than enough water if you feel them coming on.

      Here’s my thought: When a friend’s daughter went into early labor (uterine cramps) The doctor had her drinking 6-8 oz an hour. Once her delivery date got close, she slowed down on water intake and labor kicked in. She carried her baby for almost a month longer using that trick. hmmm.

      Do you think it’s the same thing? I wonder. I hope that you get the relief you need hunnyo. I’m glad you stopped by. I love new best friends. xoxo Karen:)

  3. Wow, I didn’t know leg cramps were a sign of liver disease. I had the worst charlie horses ever, sometimes at night I could not even walk ! I even took bengay and greased up my legs and then wrapped them with Saran wrap. No joke. It would literally make me scream out. All this was signs to the disease progression. Your blog is so helpful. Thank -you

    1. Jody –

      I’m lmbo. What’s up with the saran wrap? haha! It is amazing the crazy things we try to get relief! This is one that I never thought of before. We have so many of those symptoms in common, don’t we?

      I ran a lot last month and had leg cramps. I woke myself up kind of growling this low moaning sound. When I moved, it hit hard! I finally got up and guzzled water and scarfed down some tortilla chips. Then I went outside just so I could scream.

      Next time I’ll get out the BenGay and saran wrap. Thanks for the tip… I think! lol

      Love you girl,
      Karen:)

  4. I have had hep c for a long while I suppose ……. 10 years ago I first found out I had it for sure . I was supposed to be dead by now , but I am still living on . I was wondering , so did you have a liver transplant ? lucky you if so , it is a lot of money in cash , or you must have good insurance ? My brother got his through VA . I am not so lucky . My cramps have been getting worse , please do not tell me that is a sign of getting worse ? I have used potassium citrate for my hep c cramps ……… from Lloyd Wrights book on hep c . My doctors have been as uncooperative as I have been I suppose , because I have continued to refuse their poisonous treatments . I had not heard of coconut water , or mineral drops before . sounds like good advice to me thanks ! sincerely Tom R.
    Thomas Richards recently posted…Is Too Much Protein Good or Bad for Your Liver My Profile

    1. Hello Thomas!

      It is great to outlive our death sentence, isn’t it? I did not have a transplant. The old one is still doing just enough to keep me going. I still work full time to keep insurance. Are you on medicaid or medicare? That can help with medical costs for transplant too!

      Honesty, I have had a lot of leg cramps for the past few weeks. Every night in the middle of the night. Of course it is always scary. Just like you, I think something must be going really wrong. I’m hoping it is only the dry air here. We’ve had a dozen grass fires in the last week or so. It’s is really dry with heat on in the house also.

      So I’ve been guzzling water like crazy during the day hoping that it will help. In the last 3 or 4 nights I haven’t had any. I didn’t change anything else. I also do the mineral drops and stretch before bed. I need to make a youtube of my leg stretches. I think they help.

      I’m so sorry to hear your’s are getting worse too. Please take care of yourself. Have you considered the new drugs? The side effects are not as bad. I would be interested in hearing what stage of cirrhosis you have. Also, how do you get the potassium citrate. Is that a capsule?

      I hope you get some relief and a good night sleep.
      xoxo KarenL)

  5. Thank you so much for this information. I have Hep C and stage 4 cirrhosis. The Center For Communicable Diseases thinks I probably contracted it 44 years ago and that’s pretty amazing since I only started getting severe symptoms in the last 5 years. I did the Pegasus treatment and the virus was undetectable after week 4 but showed up again 6 months post treatment. I have only started getting the muscle cramps in the last 2 years but they are getting more frequent and much more painful and longer in duration. I have a doctor’s appointment today and am going to ask about the quinine and other drugs you mentioned. Thank you again. Hope I get relief!

    1. Linda,

      I’m happy to hear from you. I think those of us with stage 4 should stick close together, don’t you? I’m really sorry that we had to get to know one another this way. Double sorry that the protease inhibitor didn’t work. Do you think that you are a candidate for the new drugs? I hope you’ll let me know if your doc mentions it today.

      My muscles all seem to cramp. Leg cramps for sure, but even my hands cramp with too much exercise. I’m going to do a little experiment with water intake and see if there is any connection. In the meantime, I hope you’ll keep me posted after ur doc visit. I truly hope you get some relief too.

      I posted a youtube today. Hand and wrist pain with slight cramping too. My little fingers curl up so weird. And yes, it hurts. Ah stage 4. The stuff we have to deal with.
      Again glad to meet you. Thanks for stopping by. I’m on a snow day and get to take time to read.
      xoxoxo Karen:)

  6. After a lifetime of leg cramps, I found a simple solution that works: I drink an ounce or two of Apple cider vinegar before bed. No cramps since I started a few months ago, it takes a week or two for them to stop completely. Some people put the. Vinegar in tomato juice to cut the sharpness. I take it straight. Hope this works for you.

    1. Rosie,

      Thanks for sharing your tip with us. I also use apple cider vinegar, but have never done so to deal with leg cramps. I’ve been training for a 5K and find them to be worse lately. I’m going to give this a try!

      I’m glad you stopped by and shared.
      xoxoxo Karen:)

  7. Karen, thanks for being here with us. I have ESLD (Child-Pugh 4) decompensated cirrhosis with ascites and edema. I tried most of the above “remedies” including Taurine and BCAAs, but with little tangible results. I will try the coconut juice, thanks. My liver doctor seems to attribute the severe cramping as a side affect of low levels of albumin, which is common in cirrhosis. Diuretics used to control my ascites (spironolactone and lasix) do seem to make my cramps worse. Perhaps because they are potassium binding (at least spironolactone is)? They are as painful as anything that I have ever experienced. Hence, I have learned to minimize salt to an extreme and take the diuretics only when I need. If you are on potassium binding diuretics, taking additional potassium may not be recommended. My “bind” is that the cramps often start in one wrist, go to the fingers, forearm, humerus, neck, jaw, abdomen, legs, feet and toes, but thankfully not all at the same time. If I can get up and walk around, 98% of the time the camping ceases for the moment. Two things that I’d like to share
    1) After starting an off-label treatment with olysio and solvadi (DAAs), the cramp duration and intensity has decreased. I am in my fourth week of treatment.
    2) I know this sounds weird, but an old friend told me about an energy/muscle treatment where one gently places both hands on both sides of the upper thigh. Then gently pulling down through to the soles and out the toes, while waffling the hands forward and back (anterior and posterior). The blockage point (probably nerve transmission) is usually at the knees. Similarly, this seems to work DOWN the arms, hands, and fingers with the elbow requiring more attention. You can do this yourself or have a friend do it. Thanks for being here and sharing.
    Don

    1. Don,

      This is really an interesting comment. I too have struggled to stay off of diuretics. I understand that Spironolactone is more potassium sparing. You’re right on that. But I had the opposite experience in that the cramps got worse on treatment. Not sure why, but I’m glad yours has decreased! Of course the lower sodium stuff helps. I’m not convinced that the coconut water helps. I am now thinking that it just helps to remind me to drink more on the days when I walk or break a sweat and get a little dehydrated.

      The pain is really maddening. I actually moan out loud sometimes! I hop around and try to work them out. It’s a crazy sight when the toes are curled! lol.
      Your idea about the massage is a sound idea. I want to try it. The problem is that I don’t like to wake someone up to help me. It usually starts at night. I’m going to make an effort just to see what happens though.

      Thank you for your comments. This blog is about our common experience with all things liver, Hep C, and cirrhosis. The exchange of information is valuable to ALL of us. Stay in touch!

      xo Karen:)

  8. My husband was just in agony a little while ago with severe hand cramps. I gave him about 3 ounces of pickle juice and the cramps went away in a few minutes. He was amazed.He is on Bumex and aldactone,and takes magnesium and calcium supplements. His cramps have been increasing in severity. I know this is old school but it worked better than anything else I’ve tried. But only used judiciously..We are waiting to see a specialist next month. Hepatitis C and cirrhosis. Good luck to you.

    1. Angel,

      What a great cure. I can’t eat pickles due to sodium restrictions, but a few potato chips help me in the night so I know that salt balance is part of the problem! I hope that you get good news that he can try the new medications and treat for Hepatitis C. I am confident that he will feel so much better once the virus is gone. Keep me posted on what the doctor says. Check out Ihelpc Karen on facebook and you will find tons of support. Many other wives are like you – helping their spouses through treatment.
      Take care of yourself dear one. Thank you so much for stopping by. Let me know if I can do anything at all.
      xoxo Karen:)

  9. My husband gets the severe leg cramps from Hep C and end stage cirrhosis and I was told to put vinegar on a rag and massage the muscles, it seems to work without adding salt to your body.

    1. Donna,

      Now that is one that I have never heard before! I just finished a bowl on home made chili and I put vinegar in it. There are so many benefits to vinegar that most of us never knew!

      I think this can be useful for some of our best friends in the battle.

      You’re a good wife to take care of him like that. Making me smile.
      Karen:)

  10. My husband has severe leg cramps also so Thank You for your blogs! He also has severe itching do you? Or anyone out there ? Mostly legs and feet. Any help?

    1. The leg cramps are so painful. I’m so sorry your husband is having them. I have noticed that when I get up in the night and drink a tall glass of water, they go away quicker. Lately, I’ve been paying more attention to the little twinges I get in the evening. I can almost tell you when I will get the night time cramps.

      If I lay down and make circles with my feet it helps. I will point my toes and stretch them out. Then I push my heel out and make circles to stretch them. It sounds crazy, but it does lessen the crazy night time leg cramps!

      I wonder if your husband is getting enough water? I sometimes get the dry itchies. Sometimes it feels like a nerve tingling almost. Again, I just use a baby oil or olive oil and drink lots of water! I hope this helps!

      Thanks for stopping by and commenting. Love to you!
      xo Karen:)

  11. Yes he drinks lots of lemon water. When he has to take his diuretics they (cramps)are worse. The other night they were so bad he thought his heart stopped and then he felt like he had no blood pressure. He also has psoriasis which itches but he says the itch comes from down deep. Since our new health care ….our wait times to see the Dr are out a month now. I worry about him.

    1. It’s hard not to worry. In the night it’s even worse. I can make a mountain out of a molehill in no time. I’ve really upped the water intake and find that the cramping is less frequent. But then you have to really watch the sodium or the ascites will kick in.
      Let’s think good thoughts toward each other tonight. No worrying. Think we can do it dear friend? I will try.
      xoxo Karen:)

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