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Trikki2's avatar
Trikki2
Member
6 years ago

Bone pain 12mths on

Hi everyone 
I am on tamoxifen and it has been 12mths since my last chemo. My body is super sore. Hips, elbows etc. I work 2-3 days casually in childcare. This is quite enough for me. I wondered how you guys manage the pain?
Regards
Trikki2 
  • Hi @Trikki2,

    It's a bit of a double edge sword really.  Move too much, get sore,  don't move enough, things get worse and lock up. I I've been on and off Tamoxifen for just over two years now. Lower back and hip pain, elbows, one wrist and every single joint clicks and groans.  The joys of chemo induced menopause and hormone therapy huh? 
    I've tried many supplements and pain killers.  I started the "Blackmores joint formula advanced" about 2 weeks ago and it seems to have knocked the pain a bit so we'll see how it goes.  Dear as poison though. 
    Apart from that if I can wrangle a script for mersyndol out of my doctors that works well at night for sleeping if things are bad.  
    Hugs xoxoxox
  • Thankyou @jennyss for your love. It is nice to chat to people that know exactly how i am feeling. @Sister, thankyou. Yes you know exactly how i am feeling. I am thinking i will have to get out of childcare and move to a desk job. Sadly. I tried exercise and that didn't go well. My next step pilates. I have an oncol appt in 2 weeks, so will have a chat then. Goodluck lovely xxx
    Trikki2 
  • Dear @Trikki2 and @sister, We need another button apart from 'like' and 'awesome'. Something like 'amen', or 'I'm with you there' or 'I hear you' or 'thinking of you' or 'best wishes' or 'sympathy'. After two years on Anastrozole I am getting off very lightly with minor pain in elbow joints and stiff ankles in the morning. Anyway; thanks for posting and

    Best wishes from jennyss

  • @Trikki2  I'm on Letrozole rather than Tamoxifen but the side effects of joint and muscle pain are similar.  When asked to list the sites of the pain I joke that my left shoulder is quite okay - not so much of a joke, really.  I'm not sure that I do manage the pain.  I live with it, and in spite of it, and it is exhausting.  My medications range from panadol to panadeine forte, depending on how bad it is today, and a trusty wheat bag for my legs at night.  Sometimes I go to bed early simply because laying down is the least painful position.  For one blissful week, I took prednisolone, and the impact of that alleviated much of the pain for quite a few weeks afterwards.  Unfortunately, any more than that is likely to have dire effects on bone density.  It has also brought on arthritis in my hands and neck, signs of which were already there but unlikely to have had any real impact on me for years if not for the Letrozole.

    Lots of people advocate exercise which I try to do but the effects are hard to anticipate.  Sometimes it really helps, sometimes it can make the pain worse.

    I'm off to see a rheumatologist in December (6 month waiting list to get in) and if she doesn't have any good answers, I think my next port of call will be a chronic pain specialist.  The gap for these people is horrendous - I got off quite lightly in the financial stakes during active treatment with regard to what I had to shell out (the fact that I couldn't work is a different story) but the dollars are adding up for dealing with the aftermath.