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Muscle & Joint Pain Due to Tamoxifen

Auds01
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Hi Everyone,

 I am 54 years old and had breast cancer in 2012 - having a lumpectomy surgery on valentines day then went on to have chemo, should have been 6 sessons but my body was not tolerating the chemo so I on had 3 sessions.

Went on to have radiotherapy which went well and since March 2012 was prescribed Tamoxifen since then - no consultants, doctors or nurses advised me on what to expect and from the minute I had taken my first tablet - it has changed my life.

I do wish the health experts would advise us on what this drug does and the immediate and long term side effects that it has on people, so they know what to expect. 

No one advised me that this drug was from the start putting me throught the menopause and doing it COLD TURKEY with no additional support or medication.  I do understand that this cancer was caused by hormones and the HRT was not an option. 

I am now always warm (before I needed hot water bottles in bed) now I need a fan in every room and the bedroom fan runs from the minute I go to bed to the minute I get up - no matter what the weather is like outside.  I do still get hot/cold sweats day and night, put on weight, this drug has also affected my eyesite and now I wear glasses.  I don' t know about anyone situation but I also find that even now I seem to get every cold, flu or any type of infections very easily.

I know this drug is the better of the 2 evils but I struggle (and have been struggling for 4 years now) with joint/bone pain - some days are okay as some are not (like yesterday & today - awful ) - I and many others like me feel a lot older than I actually am, and in the back of my mind worry that something else is wrong.

Having consulted with the doctor several times, I am on anti-depressants (as I do suffer from depression), Co-codamol - low dose and also gabapentin that is supposed to block nerve pain - occasionally these drugs help but sometimes they don't scratch the surface of the pain most of the time.  Pain in which my ankles, knees, hips, shoulders, wrists fingers and neck ache like I have flu or full body arthritis.

My consultant suggested to me that because I had the highest level of estrogen levels in my body that I remain on Tamoxifen for life and now they have ended my consultants visits - expressing that evidence has shown there is no requirement for follow-up appointments or mamograms after 5-7 years - this, I think is cost cutting no evidence.

I loath going back to the doctors - they have enough problems in the present climate and I am worried in case they take me off the medication.

I am also in the process of looking for a new job in a office - which scares me in case I have too much pain to do my job.

My apologies if this sounds like a rant but feel today I needed to express myself and have found this forum that lets me know I am not alone (which is a great help).

I would love to hear from people who have experienced the same situation and any tips that may help with the pain will be greatly appreciated.

My very best to you all.

Audrey x

  • I'm really sorry to read of the difficulties you've been having on Tamoxifen Audrey.

    I can't begin to imagine how tough this has been for you but I'm glad you've discovered that a lot of others here have also experienced some of the side effects you've been contending with and I'm sure some of them will be along soon to offer their support and advice.

    I know the thought of going back to the doctors isn't the most appealing but due to the impact this is having do think about getting in touch with them or possibly seeking a second opinion.

    If you'd like, you can talk things through with one of our cancer nurses on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

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    Hi Audrey , just wanted to say hi and I feel your pain!!i have been on tamoxifen for 18 months and although I’m only 48 I feel 108 some days. My knees are the worst and also my shoulder on the side of treatment. My moods are wild, happy one minute and practically psychotic the next. I have put weight on but told the tablets are not responsible for that ( great , I’m just fat)  I’m tired all the time too. I have found a brand that seems to suit me finally but the thought of another 8/years on these is pretty depressing, the only thing keeping me on them is my kids aged 9 and 15 . Sending a virtual hug your way, take care xxx nicky xx

  • Offline in reply to nicky453

    Hi Nicky,

     

    Thank you for your reply and kind words. I understand your frustration - that everyone says it's not the Tamoxifen (so therefore is us to blame and we are making it up - its so not true) - it is the  best drug for this type of cancer but unfortunately the side effects are horrible but this is better than the alternative.

     

    All of my joints ache from morning to night - the only time I get relief is when the other drugs kick in and if I forget to take them on time - I end up with heap loads of pain until they kick in.

     

    I am starting a new job next week and hope that I can control the pain enough to do my job well.  I work in an office so there is not much moving around - just mental stress (I think :).

     

    If you ever want to talk direct, I would be very happy to be a virtual supporting friend.

     

    Virtual Hugs to you, take good care of yourself - Audrey xx

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    Hi Audrey, sorry to hear your suffering so badly, I went on tamoxifen in 2010, I came of it 2 days ago.  

    It's took me a year and a half mentally to deal with tamoxifen, I got very depressed, to a level I never want to experience again.  The physical side as in joint and muscle pain also cramps are over whelming. I already have arthritis and cyatica, the tamoxifen heightens that pain sometimes to a point where I can only describe as, I felt crippled.  I also like you have fan on every day of the year 24/7. The sweats to, I go to bed with a towel nightly.  It certainly does change lives and not always in a good way, but 10 years on, I can't believe I survived Tamoxifen or shall we call it Tamoxipause lol a play on menapause symptoms. 

     

    Dureing my 10 years of Tamoxifen I took vitamin E capsules, my hair was falling out my skin aged noticeably in first year, i took it oraly and popped one capsule into my face cream at night, yes it did help. 

    For my muscles and joint pain I took B12, b complex, and occasionally tumeric vitamins.  My B12 is an injection as I have a deficiency but I oraly top up with them also, and if I forget to take them my joints tell me, so yes they also help maintain it to a level you can function a little better,  I also changed my diet to more fruit veg pulses rice noodles pasta, now this wasn't a choice, but more to do with my digestive system changed on Tamoxipause, and I felt ill with most foods I loved and suffered extreme cramps my ibs got worse as did acid, so the above list became what I could eat with less pain.  

     

    It's no miracle cure but it helps if taking daily, I was also given pain killers but they only mask it for a small while and they make you feel unwell after a while with all there side effects to.  I think it's fair to say Tamoxifen is rather harsh on some people, some more than others,  what helps for one person may not be right for another, but on that note, a lot of foods and drinks alter our moods and energy levels, and much more. 

     

    Well I'm 2 days in on my no more Tamoxifen, I have only had mega severe leg cramp once and sudden urge to sleep.  Nothing major so far. 

     

    I'd love to hear how your doing, keep your chin up Audrey, wishing you well. 

     

    Kym X

     

     

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