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

245

Comments

  • crselby
    crselby Member Posts: 441
    Quinine
    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
    chenheart Member Posts: 5,159
    crselby said:

    Quinine
    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~~

    Thanks so much for weighing
    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♥
  • ppurdin
    ppurdin Member Posts: 1,181
    Hi Chen
    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
    ppurdin Member Posts: 1,181
    Hi Chen
    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
    ppurdin Member Posts: 1,181
    Hi Chen
    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
    ppurdin Member Posts: 1,181
    Hi Chen
    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
    ppurdin Member Posts: 1,181
    Hi Chen
    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
    ppurdin Member Posts: 1,181
    ppurdin said:

    Hi Chen
    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.

    Oh my guesh.
    I am so sorry all the post.ppurdin.
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    chenheart said:

    Thanks so much for weighing
    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♥

    it's a side effect
    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
  • GayleMc
    GayleMc Member Posts: 311 Member
    ppurdin said:

    Oh my guesh.
    I am so sorry all the post.ppurdin.

    I am very interested in the
    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
    chenheart Member Posts: 5,159
    GayleMc said:

    I am very interested in the
    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.

    NONE of the above! I got
    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
    GayleMc Member Posts: 311 Member
    chenheart said:

    NONE of the above! I got
    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♥

    Thank you Chen. I'm gonna
    Thank you Chen. I'm gonna try it. Amazing, I guess you do learn something new everyday.
  • waffle8
    waffle8 Member Posts: 234

    it's a side effect
    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

    tamoxifen
    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...
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    GayleMc said:

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

    I am so intriqued by this post .. so many of us
    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
    Marcia527 Member Posts: 2,729
    We tried it and it didn't
    We tried it and it didn't work for us. For us the soap myth is busted. What results did you all get?
  • Tux
    Tux Member Posts: 544
    I started Tamoxifen in Nov.
    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!
  • chenheart
    chenheart Member Posts: 5,159
    Marcia527 said:

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

    As I mentioned in an earlier
    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!
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    waffle8 said:

    tamoxifen
    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...

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

    Maureen
  • elm3544
    elm3544 Member Posts: 748
    Leg Cramps
    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
    chenheart Member Posts: 5,159
    elm3544 said:

    Leg Cramps
    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?

    Thanks for asking~ I am
    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♥