CSN Login
Members Online: 12

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

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

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♥

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

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's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

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.

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

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

fauxma's picture
fauxma
Posts: 3535
Joined: Dec 2008

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

Sally5
Posts: 86
Joined: Jun 2010

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)

huntbake
Posts: 2
Joined: May 2013

Hello my name is Michelle and omg i just now decided to research my leg cramps on line. Ive been on tamoxifen for 3 years now and just recentley been having the charlie horses at night sooooo bad, the worst pain ever! So it is a side effect from tamoxifen?  I swear this is so miserable i thought something was really wrong with me. I just made appt. w family doc to get tested blood work. so this soap thing works? what a relief to know how many others have had this problem.  are you off the tamoxifen? and does the cramps go away?

burcu123
Posts: 70
Joined: Jan 2013

your physician can prescribe meds for it. Also yuo can drink soda club water It has quinine in it and helps cramps, meds like sinemet and quinine helps leg cramps

2Floridiansisters's picture
2Floridiansisters
Posts: 361
Joined: May 2010

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's picture
chenheart
Posts: 5182
Joined: Apr 2003

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♥

Sally5
Posts: 86
Joined: Jun 2010

2Floridasisiters,

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

I'll let you know.

Merry (Sally5)

heidijez's picture
heidijez
Posts: 441
Joined: Mar 2010

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.

Nufferz's picture
Nufferz
Posts: 55
Joined: Jul 2009

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.

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

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♥

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

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

jo jo's picture
jo jo
Posts: 1175
Joined: Jun 2010

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.

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

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.

disneyfan2008
Posts: 5385
Joined: Oct 2010

I never in million years Until reading here would have thought connected to tamoxifen. I have oncologist appt next week. I will mention them to her-in past I never thought to say anything.

see learn something new every day right? could be connection of the two..mmmmm

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

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.

Bella Luna's picture
Bella Luna
Posts: 1572
Joined: Aug 2009

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's picture
cahjah75
Posts: 2623
Joined: Jun 2010

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

TraciInLA's picture
TraciInLA
Posts: 1846
Joined: Jul 2009

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

ladybroc
Posts: 2
Joined: Jun 2011

Hi--I have been on tamoxifen since May 2011 and have severe leg camps almost every night.
I , too tried the soap under the sheet trick-it worked for awhile and then didn't. I eat at least 1/2 a banana every day but do not drink milk!! I had a scan and have no blood clots, thank Goodness!! Any other ideas our there???? ANNE

huntbake
Posts: 2
Joined: May 2013

HI LADYBROC

OMG I'VE BEEN ON TAMOXIFEN ABOUT THE SAME AMOUNT OF TIME YOU HAVE SINCE 2011 BUT JUST RECENTLY BEEN GETTING THE WORSE CHARLIE HORSES AND LEG CRAMPS EVER!!! THEY R THE MOST PAIN EVER AT NIGHT. SO MY FEAR IS BLOOD CLOTS ALSO. IM SO GOING TO GET A SCAN FOR CLOTS NOW.  IM GOING TO TRY THIS SOAP THAT IS CRAZY. IM DESPERATE

Miss Murphy's picture
Miss Murphy
Posts: 302
Joined: Feb 2010

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

sea60's picture
sea60
Posts: 2601
Joined: May 2010

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

disneyfan2008
Posts: 5385
Joined: Oct 2010

It seems like lasts for ever..I had 2 in one night so counted for second one-just over min..seemed like an hour to me

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Well, Claudia, leg cramps go with lower estrogen. When I went through natural menopause I had leg cramps several times a night and less during the day. With Tamoxifen (since Nov. 2009) they've gotten worse. Everyone says to stretch it. Doesn't work for me because the opposing muscle then cramps. I've watched the muscle distortion go from my toes, to my foot, to my calf, then I can feel it in my thigh! I use mind/body relaxation or stretching. My oncologist knows I want to try to go natural (never works, though) so he suggested Quinine water. Quinine is in tonic water. It's hard to find it without corn syrup in it though, so I haven't tried it.

This thread shows how many of us have this quality of life issue but just haven't complained about it!

~~Connie~~

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

Thanks so much for weighing in on this subject! I am both appalled and amazed that so many of our health care professionals disregard what seems to be an obvious side-effect! Even if it were not the Tamoxifen per se, the fact that it stops estrogen should give our Drs enough insight to tell us that leg cramps MIGHT be part of our future and that we can do this-and-that to remedy it!

So quinine, soap in the bedsheets, massages, calcium/magnesium and more avocados are in my daily routine! LOL Seems better to me than taking any more meds~ I hope for the best, for me and for my fellow warriors! Thanks for the insight!

Hugs,
Chen♥

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

I'm kinda surprised that some practitioners say it isn't. One caution: I had bad leg cramps with tamoxifen and they would be sore after a bad bout. So I didn't really notice the deep vein thrombosis that lead to my pulmonary embolism shower because my legs were sore a lot! I did notice not being able to breathe.

Maureen

waffle8
Posts: 232
Joined: Mar 2010

Wondering how long you were on the meds. before you got the blood clot? I have been taking it for 3 days and have had a pain in my left leg since day one.... Anyone else had the thrombosis side effect? Thanks ladies...

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

I started tamoxifen in April after rads and the clots were in November--Friday the 13th!!

Maureen

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am sorry you are having to deal with your legs cramping.I have been on Tamoxifen for almost 8 months.I haven,t had the cramping.I had that when I took Armidex,I have really bad hot fkushes and insomia with Tamoxifin.I hope you feel better soon.I think our Drs. are known to act like they never heard of a side effect when we mention it.I have had the same reaction from my Dr.Take care. PPurdin.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am sorry you are having to deal with your legs cramping.I have been on Tamoxifen for almost 8 months.I haven,t had the cramping.I had that when I took Armidex,I have really bad hot fkushes and insomia with Tamoxifin.I hope you feel better soon.I think our Drs. are known to act like they never heard of a side effect when we mention it.I have had the same reaction from my Dr.Take care. PPurdin.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am sorry you are having to deal with your legs cramping.I have been on Tamoxifen for almost 8 months.I haven,t had the cramping.I had that when I took Armidex,I have really bad hot fkushes and insomia with Tamoxifin.I hope you feel better soon.I think our Drs. are known to act like they never heard of a side effect when we mention it.I have had the same reaction from my Dr.Take care. PPurdin.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am sorry you are having to deal with your legs cramping.I have been on Tamoxifen for almost 8 months.I haven,t had the cramping.I had that when I took Armidex,I have really bad hot fkushes and insomia with Tamoxifin.I hope you feel better soon.I think our Drs. are known to act like they never heard of a side effect when we mention it.I have had the same reaction from my Dr.Take care. PPurdin.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am sorry you are having to deal with your legs cramping.I have been on Tamoxifen for almost 8 months.I haven,t had the cramping.I had that when I took Armidex,I have really bad hot fkushes and insomia with Tamoxifin.I hope you feel better soon.I think our Drs. are known to act like they never heard of a side effect when we mention it.I have had the same reaction from my Dr.Take care. PPurdin.

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

I am so sorry all the post.ppurdin.

GayleMc
Posts: 311
Joined: Jan 2010

I am very interested in the soap idea. I do have what seems to be a stupid question. Do you rub your foot or leg on the bar of soap or tap it when a cramp hits? Thanks.

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

NONE of the above! I got soap, Dial to be exact, but according to some sources it doesn't matter at all what type of soap ; I even read that the small soaps from hotels are just as good as big bars~ I didn't even take it out of the wrapper, and put one under the fitted sheet at the foot of the bed, and another a couple of feet up...also under the sheet. Nothing I read said o use 2, but I thought, why not?!
My sweet husband Reggie doesn't even know they are sharing the bed with us! LOL I read that for many people there is a chemical reaction ...how and what I am not sure of, but that for that segment of the population, it works! And so far, knock wood, cross your fingers, I have NOT had another charlie horse!
Here's hoping that if you need it, it works for you!!

Hugs,
Chen♥

GayleMc
Posts: 311
Joined: Jan 2010

Thank you Chen. I'm gonna try it. Amazing, I guess you do learn something new everyday.

VickiSam's picture
VickiSam
Posts: 8272
Joined: Aug 2009

have 'charlie horses' with or without taking medication .. banana's help, but not always. I've tried everything .... this is food wise. No I will run out to Target .. for soap and a laundry garnment bag. What a Great idea, and I bet the soap smell gives sheets that fresh scent .. win win situation.

Don't even get me started on our 'so called' professional doctors, who continuiious give me that BLANK stare when I ask a question that has not been addressed in their breast cancer - guideline booklet.

Thank you for the wonderful and new suggestion.

Vicki Sam

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

We tried it and it didn't work for us. For us the soap myth is busted. What results did you all get?

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

As I mentioned in an earlier response, for me, so far, so good! No mesh bag needed ( for me, anyway)! I just put an UN-opened bar of Dial Soap in the foot on the bed under the fitted sheet and one more for good measure! As I said, I don't know if I have just been lucky, and the leg cramps are "on vacation", but since the soap has been there~ No Leg Cramps!

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

I started Tamoxifen in Nov. & the leg cramps were unbelieveable! I complained to onc., but he had no solutions to the problem. I will say they have let up from about once a month to none at all this summer. When they did occur, I laid on the couch with a heating pad; it did seem to help. Hope yours eases up!

elm3544's picture
elm3544
Posts: 745
Joined: Jul 2009

I have always gotten them so if the tomoxifen is causing them I have not noticed. But my med onc. has me taking a "b complex" vitamin pill every day I was told years ago that B vitamins taken along with something else- I forgot what-help with leg cramps. I'll have to look it up!
I hope you find something that works for you, I know how awful they are.
Other than that how are you holding up?

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

Thanks for asking~ I am feeling really, frighteningly well, actually. It does scare me only because I am waiting for the proverbial other shoe to drop, and pain or something to set in...honestly, if I didn't know I was sick, I wouldn't know I am sick! I am still doing everything I always did~walking the 3 miles a day, being part of my book club, going out to dinner with friends and family, cleaning the house, cooking and eating dinner, shopping~ absolutely everything! I feel lulled into a state of denial, and it is unnerving sometimes. If that makes any sense at all!

Hugs,
Chen♥

elm3544's picture
elm3544
Posts: 745
Joined: Jul 2009

Enjoy feeling great and I hope it continues for you throughout treatment and beyond. Glad you started this post-lots of good things to try! I took my B vitamin today. I buy 2 avacados every time I go to the store so I have that covered. I forgot to get bananas today, darn! And love the soap idea, even if it doesn't help it certainly can't hurt! I'll have to read through again to see if I missed anything.

sal314
Posts: 633
Joined: Jul 2010

I got them too, but only on my left calf. I was so paranoid when they first started I made my doctor order an ultrasound to make sure it wasn't a blood clot.

Turned out it was fine. They come and go and seem to get worse if I'm stressed. I haven't done anything for it, but I've heard calcium supplements can help?

Hope they subside.

Sally

dena brannan
Posts: 6
Joined: Aug 2010

leg cramps im used to potassium def. what i really need to know is what do you do when you sweat through everything you own overnight

dena brannan
Posts: 6
Joined: Aug 2010

leg cramps im used to potassium def. what i really need to know is what do you do when you sweat through everything you own overnight

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network