Tamoxifen and Leg Pain

marie567
marie567 Member Posts: 3
edited March 2015 in Pain

Hello, I've been on tamoxifen almost five years.  The last year I've had leg pain and weakness in one leg which unfortunately coincided with knee surgery.  Any exercise is difficult, including walking.  it's been hard to figure out if it's the tamoxifen causing the leg pain in the thigh (I've been told it's coming from my back, hip, a motion problem).  I've researched most everything and all looks okay.  Have any of you had this on tamoxifen?

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  • Wilsie2
    Wilsie2 Member Posts: 441
    edited July 2013

    I am not on Tamoxifen but have pain and weakness in right thigh and sometimes shin. I an on Aromacin and hope it is a side effect, I just had CT scans and they didn't see anything. Sometimes it even wakes me at night. Any opinions?

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  • msphil
    msphil Member Posts: 1,536
    edited July 2013

    yes I did have leg pain while on tamoxifen, and along with several other side effects,mine disappeared after completion of the 5 yrs, it took time but it,s gone. I,m a19 yr Survivor(Praise GOD). msphil(idc,stage 2, 0/3 nodes, l mast, chemo and rads and 5 yrs on Tamox

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  • src3acs
    src3acs Member Posts: 40
    edited July 2013

    I've been on Tamoxifen for about 5 months and I get leg pain, tail bone pain, and terrible restless leg.  Not fun!

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  • marie567
    marie567 Member Posts: 3
    edited July 2013

    Thank you for your posts.  I'm going to mention this to my onc. next time.  I think we will be having the 5 year continue on tamoxifen discussion and I will probably ask to go off it for a few months to see if there is any change.

    Another question - do any of you feel what I call brittle?  At times my body feels like it could break.  Hard to explain.  I, say it's either menopause or tamoxifen causing this one.  I can't believe at 56 I'm feeling like this.  If this is how it's going to be from now on, it's a big drag.  Although I know I'm lucky to still be here and besides being able to move around comfortably I'm doing well.  Any thoughts on this appreciated.

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  • Nancy44
    Nancy44 Member Posts: 43
    edited August 2013

    Marie567; yes I know exactly what you mean by brittle.  I've been on Tamox for 5 months and for the past month, everything hurts and the deep shin bone pain is the worst.  I try to walk it off and can barely make it home.  I'm afraid to hug anyone because I swear my bones will crunch!  I'm 45 and was not expecting to feel so weak and feeble.  I have no insight, just wanted you to know you weren't alone; take care.

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  • AnnieBear
    AnnieBear Member Posts: 96
    edited August 2013

    Not much to add, but I feel the same way - my legs are very tender, lots of cramping in my calves, and bone pain and I am sure it is from Tamoxifen.  I hate taking this stuff ! ! !

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  • bluepearl
    bluepearl Member Posts: 961
    edited August 2013

    I get Charlie Horses more often. Leg pain can be referred pain from the back as well. I haven't run into this yet. Have pain in my metatarsel bone in foot but am sure it isn't tamoxifen.....just walking five miles a day in the wrong shoes.

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  • AnnMarie246
    AnnMarie246 Member Posts: 8
    edited August 2013

    My guess is it's the tamoxifen?

    I have been having the same problems with bone pain.

    I stopped tamoxifen after 11days because my MO thought my cancer had spread to my bones.

    Thank GOD bone scan was negative.

    Back on tamoxifen and was up all night with leg, shoulders and back pain.

    I feel like I got run over by a truck!

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  • Loral
    Loral Member Posts: 932
    edited August 2013

    I have had left thigh pain that radiates to the groin area since April, I bought a groin thigh wrap, it seems to help, not sure if it's Tamoxifen. I had an ultrasound, no DVT, that's good. I had an xray yesterday. Waiting for results.

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  • JMWilson
    JMWilson Member Posts: 3
    edited September 2013

    I was on arimidex for the last 4 months. But since my period came back my oncologist changed it to tamoxifen. I have only been on tamoxifen for a few days, so Im not sure what side effects it will have. I know the arimidex seemed to cause what i called "bone aches". I am 47 years old, but i felt like i was 70 when my bones ached and joints hurt to move. The one thing i discovered was that exercise helped with the pain. If i would take a 20-30 minute walk, the pain was much less or non existant. It was hard to make myself get up and move. But it got easier and easier each time. I would still have occasional bone & joint pain, but not as constant as it was before i was exercising. My daughter is a registered nurse and she tells me, "A body in motion stays in motion!" I havent had any bone or joint pain while taking tamoxifen yet, and i hope it stays that way. And im exercising an hour a day now.

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  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited October 2013
    So glad I found this thread! My leg pain started during chemo (Sept-Dec 2011) and 2 years later it is still bad. I have been on Tami since April 2012. The right foot is particularly bad, with what I believe is becoming plantar fasciatis (sp?) The tendon in my foot is drawing up. The cramps are unbelievable. The restless legs at bedtime ... sometimes I just have to get out of bed. It feels like bugs crawling on my legs. My radiologist suggested B6, and my MO suggested CoQ10 ... The CoQ10 helped quite a bit.

    I also concur with the brittle bones feeling ... sometimes I feel fragile, and I have to walk so carefully because from the neuropathy I cannot feel my feet, and I fall down if I am not careful. I am fairly active ... I walk every day. I do find that my legs feel better when I keep moving.

    This is a safe place to whine, I guess ... thanks for listening!

    Debbie
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  • flat13good
    flat13good Member Posts: 93
    edited November 2013


    I have Neuropathy pain from Chemo and I take Gabapentin 3 x a day. I also have trouble feeling my feet.  I also started Letrozole and will take it for 5 yrs and it gives me bone pain. Legs, back and joints  I try to walk everyday and that does help but just getting out of my chair at work hurts. I have added Flaxseed and Omega 3 to help with the joint issues and it has helped some. I guess some of it is just the way it will be hopefully most will go away when we get to stop the medication. 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2013


    Someone on another thread suggested quinine, so I've been drinking the diet tonic water. Not too bad once you get used to it. I think it helps (the I THINK part is most important). I find if I don't exercise or do my Dr Oz video my knees and feet starting "barking".

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  • polordqueen
    polordqueen Member Posts: 2
    edited August 2014


    I have been suffering with leg, hip and tail bone pain since starting Tamoxifen. I do not know which is worse the neuropathy left from Chemo or the Tamoxifen If anyone knows how to get relief. Please tell me.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited August 2014


    Tonic Water is a great remedy for joint pain.  My sister has had knee surgery on both knees for various injuries over the years.  When she visited me last year, I suggested she drink tonic water.  (I put a splash of gin in mine LOL ).  By the end of her visit, she was a convert and drinks it every day...swears by it!!

    I also use Blue Emu Super Strength...odorless and really alleviates joint and muscle aches and pains.   I would try the Diet Tonic Water first.

    All the best!  MsP

     

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited August 2014

    polordqueen 

    I too have issues with the Tamoxafin and aches. 

    I have been taking the following supplements and have seen an improvement. These were all approved by my cancer center to take with the Tamoxafin :

    Omega 3 

    Glucosamine chondroitin 

    Bromelin 

    All these supplements will reduce the inflammation but they do take a while to work. 

    Good luck.  

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited August 2014

    I started getting joint pain after about 6 months on tamoxifen and it got really bad over the next few months.  Tried glucosamine/chondroitin and it didn't seem to help, maybe it just takes a long time, not sure.  Then I started taking Claritin, it helps with the bone pain from Neulasta so maybe...?  Allergy season was starting anyway, and it has no SEs for me.  Then I had an appt with MO and told her I couldn't do this anymore if she didn't have any suggestions. She said they have been using weekly megadoses of Vit. D for joint pain from the A.I.s and it was worth a try.  Gave me prescription-strength Vit. D (30,000 IU once a week) and it's been about 3 months now, and I think it is helping.  I also take calcium, magnesium, and fish oil.  Maybe all those things work together or maybe the pain waxes and wanes over time anyway - who knows - but for now it is better, bearable.  I also have been making a huge effort to exercise more, like aerobics, even though I lead an active life and was no couch potato anyway.  

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  • tonja1231
    tonja1231 Member Posts: 3
    edited October 2014


    I have been living with Stage 4 breast cancer and been on Tamoxifen for almost 7 years and I think I have everyone of the symptoms.. My oncologist very graciously gave me more meds to counter act the last ones. The biggest help I can find for my self is to drink plenty of water everyday. I would get such sever cramping day and night. I mentioned this to my sister the nurse and she said more water and then before you go to bed get some menthol cream to rub on the places at night. I have found out that doing so it stops the cramping within 30 seconds. I couldn't walk, I was bawling like a baby, scream for god to take me. But what he did was help me find a solution to My problem. I hope this works for you. good luck...Tonja

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  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited March 2015

    Thanks for tips on quinine or tonic water, gonna try that right away!   Debbie

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  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited March 2015


    JMWilson - I started out with Arimidex but agreed with you, I felt like I was 80 years old.  I am post menopausal. My Onc put me on the Tamoxifen after 4 months of it..  Stoill not great, but not as bad as Arimidex.   Debbie

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited March 2015

    There use to be a drug available for leg cramps, quinine sulfate. I believe it is still used as an antimalarial drug. The FDA put a stop to it's use for leg cramps because there were some associated deaths(don't know how many). A friend of mine was on this drug for leg cramps & her doctor quit prescribing it to her, telling her no one ever died of leg cramps.

    From the reading I've done (online of course), it looked like a 2L bottle of Tonic water was equivalent to one tablet. I found it impossible to drink that much in 1 day. I'm also not fond of soda in general. But did try both the diet version & high fructose version.

    As for my leg cramps, they very in frequency & intensity. Overall they are fewer. 1 1/2years to go............

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited March 2015

    I couldn't stand the tonic water. Take magnesium supplements. Old wives tale is a bar soap under your sheet. I tried Claritin for my hip pain and it's gone.

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  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited March 2015


    Well the Claritin worked when I was having Neulasta shots ... am not an allergic person but will give it a try!

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