Bone pain from tamoxifen or menopause??

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mdg
mdg Member Posts: 3,571
edited January 2015 in Bone Health and Bone Loss

I am 4 years out from my dx.  I was 45 at dx and did chemo.  I have been on tamoxifen for almost 4 years now.  I had chemo induced menopause and then had to have my ovaries out about 2 years ago due to cysts.  When I had ovaries out, my MO wanted to change me to an AI so he did a baseline dexa scan and it came back with severe osteopenia.  I then went to an endocrinologist and was put on atelvia to build bone density....have been on that almost 2 years.  Bone density is improving and I hope to get off atelvia in March.  Problem is I have been having horrible bone pain in my feet for quite some time.  It hurts so bad in the morning especially and deters me from working out and doing things I normally would do.  For a long time I was having horrible pain in my hands too and had difficulty doing normal tasks.  It seems like the hand issue has come and gone but lasts a long time when I have it (several months).  The foot pain has been here for almost a year.  I am SO SICK of it.  I don't know who to talk to so I can get relief.  Internist?  MO?  Endo?  No one thinks it is from the tamoxifen...but other women have the same pain after starting tamoxifen so I know I am not crazy.  My Endo said "you must have arthritis"....I feel like no one gets it and they just slough off my issues and assume another doctor will take care of it.  Anyone have similar pain?  Any way to manage it???  Any natural things I can take or do?  I am so frustrated.  I am not a complainer....I exercised every single day through chemo and pushed through BMX and reconstruction.  I went back to teaching aerobics a few weeks after finishing chemo.  I am not the kind of person that lets pain or discomfort stop me, but this is really getting bad. Sometimes I get really bad twinges of pain in my bones in my feet when I am not even on my feet.  I just want relief and want my life back.  I will take all suggestions....would love to hear from anyone else dealing with this.  Thanks!

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited January 2015


    Mdg - I was on tamoxifen for 4 months and I know what you're talking about.  I had such intense pain in my left foot - it was unreal.  Had xrays - everything was normal.  I went to see a podiatrist and she gave me a cortisone shot which helped so much.  I then switched back to Femara (an AI) so not sure if pain would have persisted with Tamoxifen.  At the same time I started taking glucosamine and my achy joints are doing much better.  I also take turmeric supplements which also helps.  I always check with my pharmacist/doctor before taking supplements. 

    Wishing you pain relief!

    Linda

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015
    My feet and knees were so achey, especially in the morning. I went to see a bone doc, and he said it was arthritis and would not get better. WELL - I started glucosamine and chondroitin too, and I put a bar of soap under the sheet. (Crazy huh, but do a search here and you'll can find out more info). I am happy to report that as of today I have no pain and very little morning stiffness. I had given "Tamox" a deadline and I was all set to quit, but no need now!
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  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2015

    Turmeric helps my hand pain, which was becoming arthritic prior to BC. It did seem to get worse with Tamoxifen. My knees have become painful.Sometimes the left one, sometimes the right, sometimes both, grrrrrrrrrrr! I work out everyday, sometimes twice a day. I can usually get past the pain & the workout doesn't make it worse(even running). Since exercise is the only thing that keeps me sane, i plan on stopping endocrine therapy when I get to the 5 year point. The GYN issues from tamoxifen seem endless.

    I'm one of those thin, frail, pale types with a 100% family history of osteoporosis. My T-score is good at the moment. Could still change my mind, but I plan to stop after 5 years & never take an AI. I'd just be trading problems.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    The other thing that changed recently was that the pharmacy switched me from Watson brand to Mylan brand. Now the night sweats are back, but the aches are gone. Kinda missed those night sweats.

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  • mdg
    mdg Member Posts: 3,571
    edited January 2015


    Thanks ladies.  Meeting with my MO next week.  I will add some glucosamine - I am sure it can't hurt!

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  • Raj20
    Raj20 Member Posts: 1,112
    edited January 2015

    I took tamoxifan for two years then followed by arimidex for five years which was completed sometime in 2012. After that I was on without any medication but I used to have nutrilite supplements which was quite good but I always had join pain and also suffered with frozen shoulder in my arm from which lymph nodes dissected. My doctor has given me an injection in the shoulder joint after that I was feeling okay for sometime but in 2013 I got slipped and got my wrist fractured. After 8 months again fell down and fractured my arm .Dexa and bone scan result clearly shows that I am suffering from osteoporosis. Life seems to be quite miserable at this stage.

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