Help for severe joint/leg pain on Tamoxifen

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Fitbit
Fitbit Member Posts: 21
edited April 2015 in Hormonal Therapy - Before, During, and After

I have been on Tamoxifen for 9 months - I have bad joint pain in my lower legs, ankles, feet since being on Tamoxifen. I never had this problem before. I'm young, in my early 40's, very active, exercise every day, etc. I recently went off the Tamoxifen for surgery (2 weeks before and 2 weeks after, off the tamoxifen 1 month total) and I had NO joint pain that entire month, it was great! I just started back taking the Tamoxifen and I am having severe joint pain in my lower legs and knees - so I know it is 100% the Tamoxifen. It aches at times like a bad arthritis, other times, it's a downright pain. I have to take the stairs one at a time when I'm going down the stairs! It's ridiculous. If I sit or lay down, I get very stiff in my legs (even for a short time) and I feel like I'm 80 years old in my legs. It keeps me up at night because my legs just ache so bad. Exercise almost seems to make the pain worse, but I still exercise every day.

I will probably have to be on this for 5 years and now the recommendation is 10 years. I can't imagine spending the next 10 years feeling like this. Anyone else have this issue and any recommendations on things to help? Thanks!

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


    I have been dealing with it too.  It started in my hands for a while but now it is mostly in my feet.  I exercise 5 days a week and I agree that with exercise it often feels worse.  It is depressing...I like to exercise and it prevents me from doing things I enjoy.  My MO said he didn't think it was the tamoxifen but he said I could stop taking it a while to see.  I didn't bother....what's the point?  I have to be on it because I can't be on the AI I am suppose to be on because I have severe osteopenia from the chemo.......I guess I have to just suffer with it.  I have noticed though that switching to an anti-inflammatory diet has made the pain much less for me. I am off exercise for a few weeks right now due to a sprained ankle but I will be curious to see if the pain stays away when I get back to my fitness routine. 

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  • snorkeler
    snorkeler Member Posts: 145
    edited April 2015

    I started taking magnesium to help with bone density, and then I realized my joints felt better. When I mentioned this at my last follow-up, the breast surgeon said I could also try glucosamine. If the joint issues get worse, I will try it.

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  • Fitbit
    Fitbit Member Posts: 21
    edited April 2015

    Good advice, thanks! Going to check with my oncologist and see what she recommends too. I've thought about taking a glucosamine/msm supplement - I give it to my dogs for their joints and it works for them! I just didn't know if it would really make a big difference with this kind of severe pain. I'm sure it can't hurt though.

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

    I had severe pain last fall and cut back on exercise and started glucosamine chrondroitin msn. I realized exercise, esp a stretching video I do (free - You On A Diet) really does help a bunch so I'm back at that. Hope it improves soon

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