Hello Hanginin
You are not alone. Been on tamoxifen 5 years nearly. Family think it’s hilarious that I have to push myself out of chairs because my knees hurt so much at the end of the day. It’s almost impossible to get up off the floor without help or a chair for the same reason. Saw a doctor yesterday that said " You wont believe how much better you’ll feel when you come off the Tamoxifen" I just want to feel 54 not 74.
And guess what, till your post I thought it was just me.
I walk/ramble with poles these days. It takes pressure off the knees and helps prevent lymphodema.
Take care
Chinook
Yes ladies, my knees are the same! I feel as though I am about 90! lol
Jacqui
i have constantly painful feet and a sooting pain from ankle to knee.
Hi Foxy
I have had knee pain since chemo a year ago - since then I have had a year on Avastin, and have just started Femara, and it has stayed more or less the same during that year. So it is possible it’s the chemo and not the Tamoxifen. I’m waiting to see if it worsens on Femara.
fintyxx
Hi
I have been on Tamoxifen for 4 years in August, I have dreadful knee pain. My dr insists its not the tamoxifen but I never had it before BC and chemo.
Carolyn x
If it’s not Tomoxifen has the doctor suggested what it might be? If not I’d press for more info/tests. I did get awful knee pain a few years ago that sorted itself out with wearing shoes/sandals with insoles as instep had dropped a bit and was putting pressure on knee as it was not correctly alligned so I wear Birkenstock sandals alot and use them as slippers too - thought I needed a knee replacement but this sorted it. Seems instep dropping happens as we get older - if you’re not “older” then it’s probably something else. It might help you too - worth a try until you can get doctor to give more advice? Isn’t it diffcult unravelling the bc SEs from other problems!
take care
Fran
i have been using Tamoxifen for 12 months now and my knees have just started hurting over the last few months. i notice that a lot of people are saying the same but the threads are quite old, is this still the case, are there any more upto date threads. it looks like it is the Tamoxifen i guess i just wanted to make sure.
Hi everyone. I have been on tamoxifen for just over 4 years and have started having bouts of excruciating pain in both knees which occurs mainly in the inside of the knee. Can only describe it as being like tooth ache in your knees. I didn’t get chemotherapy so I can’t blame that. I am 51 but feel like an old lady. The night flushes are horrendous and particularly bad just now as we are coming into autumn and the heating is on, the heating is off then on again. Having battled to lose 2.5 stone I should be feeling better not worse.
No you are NOT alone! I was seriously in stage 3 with all lymph nodes affected. How can I possibly choose not to take Tamoxifen? I’ve tried them all and Tamoxifen is the one that didn’t cripple me immediately. However, I have been taking it for 2 years and the big a small joints are excruciatingly painful! It really is so hard to stand up. My hands, knees and feet are swollen all the time and I can no longer wear my dress shoes. If. O don’t take the meds and get cancer back its Stage 4 for me. I do take pain meds, Gabbipentin and Mirapex that help a lot, but nothing, nothing so far can stop this agony in my knees, ankles, every tiny joint in my toes and my hands!
So I keep moving! I will NOT give into this! I will exercise and search for answers. My father swore to the benefits of taking Glucosimine Chondroitin for joint pain. Spelling is wrong I guess. Just ordered a bottle from Amazon. I’ll keep you posted!
I have been on Tamoxifen for two months now and I have terrible knee pain the joints of my feet and hands hurt like mad and I do suffer with osteoarthritis in my back and also have problems with my right shoulder I also have fibromyalgia which has got worse since taking the tamoxifen I never had chemo only radiation it just cant be a coincidence sometimes my feet are so bad it hurts to walk also the flushes are terrible my poor hubby I keep him awake duvet on duvet off he said it like sleeping with a radiator on full close by lol oh the joys I thought once the radiation and the healing was over with I would get back to some normality but im so shattered all the time I was used to it before with the fibro being lathargic but its got worse I should really give it time as the last 8 months have been hard and sometimes I think I expect too much too soon
OMG, i am the same… I’ve only been on Tamoxifen for 1 month. My lady bits are so sore. The itch is insane. I can’t even think about “being” with my hubby, I have headaches that come from out of the blue and last for 10 days. My fingers are so sore most of the time it’s hard to type. I can’t draw or sculpt - which has been a great stress relever over the years.I feel like i am going to fall over all the time because the knee pain is so bad.i have he most awful hip pain that sends numbness down my leg and into my foot.I can’'t prepare and cook dinner without being in cripling pain. Nausea is driving me batty and i have brain fog that is awful and i just can’t think straight. .I’m almost 4 months post surgery, i had lumpectomy and sentinal node biopsy - they ended up taking 3 as they were suspicius but tested neg. I had 19 treatments of rads recommended BUT had first 4 as boost then onc called me and said because i was big busted, they felt that remaining 15 wasn’t enough and wanted to increase it to 25. When i told her i was really disappointed, she offered another solution and it was to keep the remaining 15 treatments but to increase the dose of rads. I blistered and lost all skin on my breast and nipple… Hubby described it as “a worn out old football (aussie rules)”. I have terrible pain in my breast - surgeon says its from rads and onc says its from surgery… i am sick of feeling this terrible. I’m 46 yrs old and i feel like i am 90… i am just so sad and feel so alone, i cry all the time because i can’t do anything. It’s my kids that are suffering they are 10 and 17… Not a life for kids to watch their mum lay in bed and just cry…
it just shows you how inportant oestrogen is to so many aspects of your body doesn’t it /mood /joints /lady bits - very depressing when it has such a major impact on your quality of life .I know a lot of ladies who have stopped taking the meds because the side effects were just too much .Very often the Onc will agree to you having a break for a few weeks to let things settle down when you have such serious side effects and then have a discussion about how to approach things .I have read that some GPs have prescribed oestrogen based cream for the lady bits issue and as it is only localised the Breast Team are ok with this -may be worth asking . Also worth asking exactly how much percentage benefit you are getting as for some it is a lot greater than others.
Have either of you tried Teva brand -seems to be generally the one people tolerate the best re side effects .
Hi Jill, I’ve only been Tamoxifen for a month so have only tried 1 brand, Sandoz - I’m in Australia and not sure if we have the same brands as UK, I joined this site as the Aussie sites aren’t as informative. I’m hoping as my body adjusts to everything, thing will settle.I have next onc appoint in 2 weeks so i’ll see how i go til then. I have a bulging disc in my neck which isn’t helping everything else. It causes tingles from my shoulder to my fingertips. It’s always there just these little annoying tingles and then they get cold and painful and then settle back to constant. It’s debilitating
You poor thing you are in the wars all the stress you have been under will make you more vulnerable too .Teva is an international brand so may be worth pharmacist if they will order it for you to try .Can make a big difference to some women ,also ask doc re oestrogen cream .
Optimissy that is such a helpful informative post may be worth re-posting it under a different (problems with lady bits??!!) heading so ladies with similar issues can find it more easily when searching for help/solutions in that "area "!
I’ve been having real problems with my knees, recently diagnosed with arthritis but I’m not convinced it’s that alone, they are stiff and sore and just will not bend without a great deal of pain and it’s driving me nuts! I’ve decided to take a Tamoxifen break for a month to see if that helps , have been on them 2.5 years and with a grade 1 tumour I’m beginning to think any benefit I’m getting from them really isn’t worth feeling like a 90 year old!! Xx Jo
Hi Jobey I am having the same issue with knees, which wasn’t there pre Tamoxifen. I came off the Tamoxifen & it got a bit better, but my knees still hurt after exercise. They also make weird noises. I asked my Onc about the damage Tamoxifen is actually doing to our joints & she said oestrogen is a necessary part of the fluid that lubricates the joints & tamox blocks the receptors. She said it would go back to normal when you stop. I’m beginning to wonder if the chemo actually damaged my joints as I have read that is a possibility too. I feel like I’ve aged 10 years as my friend who’s in her 60s always moans about her knees. Hope you’re well otherwise xx
Hi Jo, hi Bibi,
Hope you are both okay apart from the joint issues.
I’ve had minor niggles in various joints since chemo finished. Basically those bits of me that were probably wearing out a bit before this all started although they have all been livable with. So long as I get over the groaning for the first five minutes when I get out of bed I’m usually okay.
However, I’ve noticed a few times recently when I go for a run (I really don’t exert myself, never more than a 30 minute trot around the park) that my joints really ache for days after that, my hips especially. It was so bad last week that I was getting quite anxious. Suspect the only solution is to stop running and find some other exercise.
Ruth xx
I am utterly hopeless at any games or sports involving balls/round objects Helena. Always the person nobody wanted on their team at school sports.
Ruth xx