Muscle & joint pain due to tamoxifen?

Hi everyone I am a cancer survivor I was diagnosed with breast cancer in July 2011. I had my lumpectomy in August of that year got the all clear on the 13th September 2011 & started my radiotherapy in November finishing in December. I started my tamoxifen once all of that was over & I must admit I thought I was pretty lucky to have got away with no side effects however about 6 months later I started with muscle aches in my calves & aches in my knee joints & neck then it pretty much spread to all of my body , then I was diagnosed with fibromyalgia but on speaking to various people I think it’s tamoxifen I’ve been on it for 8 years now & I feel like it’s time to come off also the hot flashes are a nightmare. Does anyone else have similar symptoms to mine I love to hear from you 

Parents
  • Dear Lindy-Lou,  I too have had such bad joint pains I had a big toe joint removed as the pain was so severe.  Unfortunately the plastic replacement brokw & the surgeon who removed it would not replace it again so I had what is called a "rubber" big toe which meant I had to learn to walk again.  Now, further down the line this removal has caused me to have bad episodes of sciatica, so bad sometimes, I have to use crutches.  Now more joint pain is occuring.  I do find practising yoga every day helps the most.  love Jan

Reply
  • Dear Lindy-Lou,  I too have had such bad joint pains I had a big toe joint removed as the pain was so severe.  Unfortunately the plastic replacement brokw & the surgeon who removed it would not replace it again so I had what is called a "rubber" big toe which meant I had to learn to walk again.  Now, further down the line this removal has caused me to have bad episodes of sciatica, so bad sometimes, I have to use crutches.  Now more joint pain is occuring.  I do find practising yoga every day helps the most.  love Jan

Children
  • I've been reading these posts with interest due to my own pain. I was trying to think of a life without joint/back/leg/feet pain and the most horrendous calf cramps. I recall this time was before tamoxifen. I am a very young at heart 62 year old, a bit overweight but normally have such a positive outlook but I've been struggling so much physically and mentally to the point I'm on antidepressants. One person on this blog had part of her toe removed and I wonder if this would have happened if tamoxifen hadn't of been prescribed. I accept we get aches and pains as we age but I feel sure my problems are caused by tamoxifen. I've debilitating pain in my thumb joints, I've tried tabs, creams, heat patches, capsicum patches, magnesium oil, steroid injections, and now wear gloves that wrap round my joint for support. Doesn't take pain away but feels supported. I've been taken tamoxifen since end 2015 and should take till end 2020 but thinking of ditching. Another thing to note, about 6 months ago I started bleeding vaginally and after many tests and hysteroscopy they found polyps and thickening inside my womb which they said was caused by tamoxifen!! By the way, if this happens to you, you MUST ask for sedation during any procedure as they are horrendous . Sorry to go on, this past 5 years I feel I've ages 15 years. I'm glad I'm not alone. Take care ladies.