Tamoxifen and Leg Cramps~ what have you done about it???? OUCH!!!!

chenheart
chenheart Member Posts: 5,159
edited March 2014 in Breast Cancer #1
I have been taking Tamoxifen for my recurrance for about 5 weeks now...and OMG~ the charlies horses I get in either leg in the middle of the night is absolutely affecting my quality of life! I mentioned it to my oncologist who sorta poo-poo'd it as odd and shrugged it off. No mention that it is a side-effect or what if anything I could/should do about it.
So my sisters...if any of you has experienced this~ any remedies that helped???
Thanks in advance!

Hugs,
Chen♥
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Comments

  • Marcia527
    Marcia527 Member Posts: 2,729
    I have to get out of bed and
    I have to get out of bed and stand on the crampy leg till it stops. I heard that bananas help if you eat them and I tend to have fewer if I drink milk. Although I haven't had any milk in a long time and not having trouble but I've been eating lots of yogurt.
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Claudia, I used to get them
    Claudia, I used to get them in my legs too in the middle of the night. That was before bc, so I don't know if that makes a difference or not. I heard, like Marcia, that bananas were good for preventing them. So, I have been eating a banana for breakfast for quite a while. I have not had a charlie horse in quite a while too. It could be a deficiency in potassium or maybe it is a side efect from the tamox. Good luck, I remember all too well how painful it was. Getting out of bed and straightening the leg (while whimpering) was the only remedy.
  • 2Floridiansisters
    2Floridiansisters Member Posts: 384 Member
    I have the answer for you and it does work.
    Go to Walmart and in the laundry section where they sell laundry baskets, hangers and trash cans go look for one of those mesh laundry bags that you wash bras in, then go to the bar soap isle and by a couple bars of Ivory or Dove soap and when you get home put the soap inside the mesh bag and sleep with it down by your legs. There's just some sort of reaction when your legs and the soap come in contact woth each other. No more cramps, I swear, my husband and I sleep in seperate rooms and we both have this soap in our beds, it really does keep charlie horses away.
  • chenheart
    chenheart Member Posts: 5,159
    MyTurnNow said:

    Claudia, I used to get them
    Claudia, I used to get them in my legs too in the middle of the night. That was before bc, so I don't know if that makes a difference or not. I heard, like Marcia, that bananas were good for preventing them. So, I have been eating a banana for breakfast for quite a while. I have not had a charlie horse in quite a while too. It could be a deficiency in potassium or maybe it is a side efect from the tamox. Good luck, I remember all too well how painful it was. Getting out of bed and straightening the leg (while whimpering) was the only remedy.

    Yes, I have had charlie
    Yes, I have had charlie horses in my life ,maybe 2 or 3 ever, but now, since taking Tamoxifen I get them every week In both legs!! 5 weeks of Tamoxifen and 3 weeks of charlie horses~ It can't be coincidental! I am not sure what to do~ as I already do the things you have suggested! We eat bananas everyday, and I eat avocados even more often than bananas, which have an even higher potassium count. I drink water by the gallon; it is my all time favorite go-to drink, Reggie and I both drink Kefir or eat yogurt, and I exercise~ all things recommended. I read that a tablespoon of French's mustard (the yellow stuff my dad always called Barn Paint) before bed helps, as does upping calcium and even drinking quinine water. I just wondered if anyone else had this side effect from taking Tamoxifen, as opposed to the "regular" reasons we get charlie horses....

    Grrrrrrr! LOL
  • heidijez
    heidijez Member Posts: 441
    my primary physician says it's due to low potassium
    so the comments about bananas are spot on! i HATE bananas, but with this yucky ac chemo, i have charley horses and force myself to eat at least half a banana before bedtime.
  • chenheart
    chenheart Member Posts: 5,159

    I have the answer for you and it does work.
    Go to Walmart and in the laundry section where they sell laundry baskets, hangers and trash cans go look for one of those mesh laundry bags that you wash bras in, then go to the bar soap isle and by a couple bars of Ivory or Dove soap and when you get home put the soap inside the mesh bag and sleep with it down by your legs. There's just some sort of reaction when your legs and the soap come in contact woth each other. No more cramps, I swear, my husband and I sleep in seperate rooms and we both have this soap in our beds, it really does keep charlie horses away.

    Ya know, I did read about
    Ya know, I did read about this online an even Snopes.com says that for some odd, unexplained reason, it DOES work! Iam hapy to know someone who has tried it~ I will be trying this TODAY! Thanks so much! You sisters are the bees knees! LOL

    Hugs,
    Chen♥
  • Nufferz
    Nufferz Member Posts: 55
    heidijez said:

    my primary physician says it's due to low potassium
    so the comments about bananas are spot on! i HATE bananas, but with this yucky ac chemo, i have charley horses and force myself to eat at least half a banana before bedtime.

    Charlie horses
    I too have been using the soap in our bed. I'm also on Tamoxifen (over a year now)and have been having leg cramps really bad. I bought 3 bars (pack) of Irish Spring and I put one under my bottom sheet on my side of the bed. I doubt brands make any difference though. Haven't had any charlie horses for over two months now. It may not work for some people, but it sure works for me.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Me too!
    I haven't had them every week like you have, but when I do get them, man do they hurt! Much more than the cramps I used to get before. I hadn't made the connection to the Tamoxifen, but now that you mention it the frequency and severity did increase about the time I started on the Tamoxifen.

    I might try that soap trick as well - I'd never heard that one before.

    Hope it works for you Chenheart!

    ((HUGS))
    Cindy
  • chenheart
    chenheart Member Posts: 5,159
    heidijez said:

    my primary physician says it's due to low potassium
    so the comments about bananas are spot on! i HATE bananas, but with this yucky ac chemo, i have charley horses and force myself to eat at least half a banana before bedtime.

    Avocados have even MORE
    Avocados have even MORE potassium than bananas...so if you like them more than you hate bananas, I would switch to avocados! ( which I happen to love, so that would be a no-brainer for me!)

    Hugs,
    Chen♥
  • fauxma
    fauxma Member Posts: 3,577 Member
    chenheart said:

    Yes, I have had charlie
    Yes, I have had charlie horses in my life ,maybe 2 or 3 ever, but now, since taking Tamoxifen I get them every week In both legs!! 5 weeks of Tamoxifen and 3 weeks of charlie horses~ It can't be coincidental! I am not sure what to do~ as I already do the things you have suggested! We eat bananas everyday, and I eat avocados even more often than bananas, which have an even higher potassium count. I drink water by the gallon; it is my all time favorite go-to drink, Reggie and I both drink Kefir or eat yogurt, and I exercise~ all things recommended. I read that a tablespoon of French's mustard (the yellow stuff my dad always called Barn Paint) before bed helps, as does upping calcium and even drinking quinine water. I just wondered if anyone else had this side effect from taking Tamoxifen, as opposed to the "regular" reasons we get charlie horses....

    Grrrrrrr! LOL

    I have had problems on and
    I have had problems on and off for years with charlie horses, in my legs, my stomach, my thighs, just about everywhere. We thought it was medication induced (cholesterol) and changed it frequently but it still happened. I tried all the foods etc. but it never changed much. I did get some relief with a quinine based prescription (similar to malaria meds) so you might ask your doctor about trying that. Hope that these lessen in frequency.
    Stef
  • jo jo
    jo jo Member Posts: 1,175

    Me too!
    I haven't had them every week like you have, but when I do get them, man do they hurt! Much more than the cramps I used to get before. I hadn't made the connection to the Tamoxifen, but now that you mention it the frequency and severity did increase about the time I started on the Tamoxifen.

    I might try that soap trick as well - I'd never heard that one before.

    Hope it works for you Chenheart!

    ((HUGS))
    Cindy

    Me also...i never connected
    Me also...i never connected mine to the tamoxifen...thought it was from the chemo. Mine wasnt just during the night...it was during the day as well. I would also get them in the arches of my feet and it literally made my toes curl...it hurt.
    Ive been on tamoxifen almost 3 months now and now that i think about it, its been almost a month since ive had any...they just went away on there own. I love bananas and i was eating them all the time even during the cramping...so either they werent working or i was just that low on calsium that it took forever to work.
    I hope you find relief with the soap in the bed thing.
  • mariam_11_09
    mariam_11_09 Member Posts: 691
    Potassium which is in
    Potassium which is in bananas and cucumbers. I am not on tamoxifen but have been getting incredible leg cramps mostly at night. I know that potassium works for me. I do take a mineral suppliment in addition to extra potassium. My Onc. gave me the thumbs up for this.

    In fact I was having the same problem when I was pregnant with my daughter and the doctor then told me I was low on potassium, after an IV infusion I was fine.

    I wonder if you could have blood work done to see if you are low in anything.

    Do hope it gets better because it is pretty disrupting to ones sleep.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    jo jo said:

    Me also...i never connected
    Me also...i never connected mine to the tamoxifen...thought it was from the chemo. Mine wasnt just during the night...it was during the day as well. I would also get them in the arches of my feet and it literally made my toes curl...it hurt.
    Ive been on tamoxifen almost 3 months now and now that i think about it, its been almost a month since ive had any...they just went away on there own. I love bananas and i was eating them all the time even during the cramping...so either they werent working or i was just that low on calsium that it took forever to work.
    I hope you find relief with the soap in the bed thing.

    I have had leg pain for some
    I have had leg pain for some time now. I was told it is not a side affect of tamoxifen, well i find that hard to believe. Wow, just use soap. I will try that. Good luck chen.
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    Sorry to hear Tamoxifen has
    Sorry to hear Tamoxifen has been causing charlie horses, no fun. I am on Tamoxifen, too. I noticed the pain when I initially started popping the pill. I started in mid-March. Just like Jo Jo, the pain subsided after a while.

    The soap remedy sounds amazing. I will have to remember it the next time my husband or I should need some relief from charlie horses.

    It's good hearing from you, Chenheart. Take care, God bless.
    BL
  • cahjah75
    cahjah75 Member Posts: 2,631
    My mother
    swears by the soap but I didn't have any luck with it. I had it under my sheet for more than a year. No relief): I've been having toe, foot and leg cramps almost daily for almost a year and I haven't even started chemo yet, let alone Tamoxifen! My rheumatologist told me to drink a glass of tonic water at night before bed, which I've been doing for the past 9 months. Some of my cramps are so bad I have to get out of bed and bang my foot on the hardwood floor. I've actually cried sometimes the pain was that intense. I get the cramps in the middle of the night usually and sometimes while I'm driving! I eat bananas occasionally but around 9 months ago I stopped drinking milk with my dinner. My naturapathic dr told me to drink whole milk and not skim so I just stopped. Maybe that's my problem. If you're all suggesting that chemo and or Tamoxifen can worsen it I'm in serious trouble. If you think of any other remedies tell me:)
    Char
  • Miss Murphy
    Miss Murphy Member Posts: 302
    Wow!
    I had no idea there were so many home remedies out there. I've been on Tamoxifen since last October and have had leg cramps on ocassion at night but my side effects are not quite as bad as the awful awful ones I had on the AI drugs altho I seem to have a constant crick in my neck muscle and my hip muscle on the right side - since both started within a week of starting Tamoxifen I think the drug is causing the problems. Maybe I should give soap a try for those issues!

    Chen, I hope one of these remedies suggested works for you - leg cramps are the pits!

    Hugs, Sally
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    cahjah75 said:

    My mother
    swears by the soap but I didn't have any luck with it. I had it under my sheet for more than a year. No relief): I've been having toe, foot and leg cramps almost daily for almost a year and I haven't even started chemo yet, let alone Tamoxifen! My rheumatologist told me to drink a glass of tonic water at night before bed, which I've been doing for the past 9 months. Some of my cramps are so bad I have to get out of bed and bang my foot on the hardwood floor. I've actually cried sometimes the pain was that intense. I get the cramps in the middle of the night usually and sometimes while I'm driving! I eat bananas occasionally but around 9 months ago I stopped drinking milk with my dinner. My naturapathic dr told me to drink whole milk and not skim so I just stopped. Maybe that's my problem. If you're all suggesting that chemo and or Tamoxifen can worsen it I'm in serious trouble. If you think of any other remedies tell me:)
    Char

    "Toxic water"
    Hi, Claudia -

    I've been on Tamoxifen for 8 months now, and haven't had any leg cramps myself, but my girlfriend swears by a glass of tonic water before bed.

    Her 16-year-old daughter started getting leg cramps at night really bad, and doesn't like bananas, so Mom suggested the tonic water, and Daughter's leg cramps have pretty much disappeared now. But Daughter couldn't remember the name, and ended up calling it "toxic water." So that's the family joke now: "we're out of toxic water -- don't forget to buy some at the store!"

    Of course, we don't give the 16-year-old any vodka with it....but I'm guessing YOU are probably of legal drinking age, if you wanted to get creative with the "prescription"!

    :-) Traci
  • sea60
    sea60 Member Posts: 2,613
    YES!!!!
    I hate them! They're so painful. I wasn;t sure why I was getting them but now it makes sense since I'm on that too.

    I also get foot/toe cramps where my feet just ball up. I know I must look like an idiot because when one hits, I do alot to hopping & jumping.

    A really good friend of mine told me that when you have a cramp, take about a teaspoon of mustard...something about the tumeric.

    I gotta try it, I just keep forgetting.

    Blessings,

    Syl
  • Sally5
    Sally5 Member Posts: 87
    chenheart said:

    Yes, I have had charlie
    Yes, I have had charlie horses in my life ,maybe 2 or 3 ever, but now, since taking Tamoxifen I get them every week In both legs!! 5 weeks of Tamoxifen and 3 weeks of charlie horses~ It can't be coincidental! I am not sure what to do~ as I already do the things you have suggested! We eat bananas everyday, and I eat avocados even more often than bananas, which have an even higher potassium count. I drink water by the gallon; it is my all time favorite go-to drink, Reggie and I both drink Kefir or eat yogurt, and I exercise~ all things recommended. I read that a tablespoon of French's mustard (the yellow stuff my dad always called Barn Paint) before bed helps, as does upping calcium and even drinking quinine water. I just wondered if anyone else had this side effect from taking Tamoxifen, as opposed to the "regular" reasons we get charlie horses....

    Grrrrrrr! LOL

    My legs too
    Yes, me too. I am at week 4 on tamoxifen and I have not slept through the night. At first, I wasn't sleeping due to my expanders....

    Now, since starting the tamoxifen, I wake up every 2-3 hours and have to stand up.... (I thought I was going crazy). It has become my routine.... I just go get more water and go back to bed. I didn't want to complain.... I am worried about blood clots....

    I am going to try the bananas and see....

    Take care,

    Merry (Sally5)
  • Sally5
    Sally5 Member Posts: 87

    I have the answer for you and it does work.
    Go to Walmart and in the laundry section where they sell laundry baskets, hangers and trash cans go look for one of those mesh laundry bags that you wash bras in, then go to the bar soap isle and by a couple bars of Ivory or Dove soap and when you get home put the soap inside the mesh bag and sleep with it down by your legs. There's just some sort of reaction when your legs and the soap come in contact woth each other. No more cramps, I swear, my husband and I sleep in seperate rooms and we both have this soap in our beds, it really does keep charlie horses away.

    Soap?
    2Floridasisiters,

    I am going to try it........ right now. It seems so simple.

    I'll let you know.

    Merry (Sally5)