Hi 

I gave been taking Tamoxifen for 3 years now. I've just turned 50 and feel 90 in the mornings. I walk each day for an hour , bath each night but struggle to get out of bed in the morning. Hot flushes have started again and sore feet. 

Any ideas , I don't want to come off it but this is painful

Hugs to you all going through the same xx

Hi 

I gave been taking Tamoxifen for 3 years now. I've just turned 50 and feel 90 in the mornings. I walk each day for an hour , bath each night but struggle to get out of bed in the morning. Hot flushes have started again and sore feet. 

Any ideas , I don't want to come off it but this is painful

Hugs to you all going through the same xx

Hello. Thanks everyone for sharing your journey. Prior to Tamoxifen I was 49, active and dashed around 100mph, running up stairs, never sat down until the evenings, felt very healthy with zero aches and pains.  I started taking Tamoxifen November 2018. A friend of mine started at the same time and we waited for any side effect to hit... we both felt lucky that we seemed to have escaped. However 6 months later I started to notice a change in my muscles/joints and we had both experienced calf cramps/stiffness especially in the mornings and after sitting down. 

After a a few more months, my back would not sort itself out, I tried yoga, new mattresses, kept moving, but the pain was affecting me so much I went reluctantly to the GP in the August. I explained to her that in addition to the chronic lower back ache I also had pains my knees, ankles, calf’s, fingers and thumbs. He answer was that we do get older and it was likely arthritis, gave me a leaflet on back exercises and told me to get on my bike to strengthen my thigh/leg muscles. She also wrote to my oncologist suggesting the tamoxifen but he wrote back and said no, side effects I’m experiencing wouldn’t be a side effect.

I did the back exercises, I continued with low impact exercise & yoga. no improvement in my back. I then out of nowhere ended up with a rotary shoulder cuff injury in November 2019. Phoned GP and was given a website for shoulder exercises. By end December my shoulder was no better, inflammation and my thumb/wrist was now in a brace. No being able to use your right arm and shoulder for much was crap. I’d had enough. I got myself a private physio who gave me some proper shoulder exercises after shed actually examined me and made me walk up and down the pool to try and strengthen my now ridiculously weak legs and back. Still not convinced I was getting to the root of all this muscle weakness I did some private blood tests at home (Thriva). Results were that I had insufficient vitamin d.... one month later on a prescribed daily dose and back ache was gone and weakness in legs gone. Both of those symptoms are actually very typical of insufficient vit d... now that I’ve researched it more it would have sVe me a lot of pain and expense. So that’s the good bit. 

The bad bit is that now I’ve got my back and muscle weakness sorted thr joint pain is getting worse and I’m very conscious of my hip, knees, clunking shoulders, big toe, small toe, both thumbs ache all the time, fingers etc.... I’m slower, much slower and compensate a lot when out walking depending on what’s hurting the most. I’ve had a test for RA which was negative so conclude that it’s all diminishing oestrogen related, peri menopausal, tamoxifen. I feel if I could calm the inflammation I’d feel so much better. I’m googling everything, some limitations due to some drugs/supplements affect how Tamoxifen works/risks (HRT, CBD oil...) feeling anxious about the future. It feels all to soon, too much at once, I was going to be one of those fit 50 year olds but feel very compromised now and anxious for my future and how much it will affect my lifestyle. Was very positive throughout my cancer diagnosis and treatment as I could see the light at the end, but this all feels very different. 

Hi.  Oh my goodness how I can relate to all of your story Shirley Valentine and thankyou for sharing your journey.  It makes me feel it’s not all in head.

i was diagnosed with her2 positive cancer in 2017.  Prior to that a very active ,fit 57 year old.   I sailed through chemo, radio and herceptin and continued to be very active through treatment and straight after.    Then started Femera (AI). Which is first hormone therapy drug for post menopausal women.  After 2 and a half years I discontinued because of the debilitating effects it was having on me ( 10 weeks ago)Mostly hands/wrists and feet .  In April this year I couldn’t do anything with the pain from Tendinopathy.  I stopped Femera after discussing with oncologist and after a five week break am on tamoxifen.

Visits to rheumatologists were frustrating to say the least and felt I really wasn’t been taken seriously and depression really set in. As you say you are limited what you can take with tamoxifen.  I tried CBD oil and thought this was going to be the life saver for me as it worked but found it couldn be used with tamoxifen.  Also limited use of anti depressants.  I tried escitalopram for 2 weeks and have to say it was the worse two weeks of my life.  Needless to say I stopped THese a few weeks ago and like you am googling for answers.   

Everything says tamoxifen doesn’t cause joint/ muscle  problems but am pretty much feeling the same.   How can it not when it reduces oestrogen.

I really cannot go on like this and want to stop hormone treatment.  I have in theory 2 years to go but just don’t think I can do it.  Just want to get back to being pain free and being myself again.