Welcome to Cancer Chat Lindy-lou although I'm sorry about the pains you've been having all over your body recently.

If you're worried it may be the tamoxifen causing this then do book in to see your doctor so you can discuss this, and possibly coming off it, in more detail.

Quite a few members on the forum have experienced some of these side effects on Tamoxifen so hopefully they will share their advice and experiences with you soon.

Our cancer nurses may be able to help as well so if you'd like to chat with them you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I hope you're able to get to the bottom of this soon Lindy-lou.

All the best, 

Steph, Cancer Chat Moderator

Hi lindy

im on tamoxifen and can relate to some of what you describe; knees, shoulders, collarbone, pelvic pain and calf cramps and back muscle spasm. was at the GP today for this reason.

ive been given naproxen for the joint pain etc, physio for my knees and back and awaiting for the ok for Clonidine for hot flushes.

hopefully all this will help - however I come off tamoxifen soon after taking it for 7 months and onto another hormone med.

What does your onc. say about coming off tamoxifen?

Oh my goodness ....I can so relate to you ....my leg pains are awful ..... I honestly do hate to complain because I’m thankful to be sooo well.... BUT honestly I could cry with the discomfort with leg pains/ cramps ....I am on Tamoxifen also. Don’t really have pains anywhere else .... just hands would be stiff in the mornings.

i would just love to know is there anything we can do to elevate the symptoms through diet exercise or rest ! 

Been on tamoxifen for 14 months now, and have noticed worsening pain and stiffness, mainly fingers, toes and wrists, but can be most joints except elbows and shoulders. Some days getting up is the hardest time of the day because of the pain and stiffness. There are some things I find almost too hard to do because of the wrist pain, such as playing my piano. I have nearly given it up. The flushes too - urgh! Dozens of times a day I have to start frantically fanning myself, then 5 minutes later I am cold. It can be pretty miserable at times, but helps a bit to know I'm not alone.

Hi .. I have been taking Tamoxifen since January and have just started get cramp, for want of a better word, in my calf muscles and my feet.  It wakes me up a couple of times a night with a pain that feels like the muscle is going to burst.  It was quite frightening the first few times.  At least I now know it's probably the medication!  I also suffer from hot flushes regularly - day and night - and then i get so cold I'm shivering.  Friends suggested a lady magnet that you can use for menopausal symptoms but it's not really working for me ...  Best wishes to everyone else experiencing this 

Hi KTT

sorry to hear of your troubles 

is I said in my bio I took tamoxifen for around

8 years not thinking that half of the problems I

had were caused by it. I also think quite a few

of my problems were caused by the menopause 

also. Since stopping the tamoxifen my hot flushesh

have almost stopped, although the knee & calf pain is just as bad but after watching an arrtical on this 

morning with some menopause experts they say 

that in perry menopause you can loose 20%

of your strength so need to build upper & lower 

body strength to get it back & arthritis is where the pain comes from that we get during the early days of tamoxifen taking ..

so we need to build it back up in order to iliminate

The pain

good luck 

Hi, I’ve been on tamoxifen for 8 years now and have been ok until about 6 months ago I’m experiencing leg pain and hot flushes are really bad, weight gain and aching joints.

my problem is I am premenopause so I’m not wanting to come off tamoxifen so I have another 2 years to go but things are getting worse.

Not sure what I can do about these things ?

Hi Lindy, I have been on tamoxifen for 6 years now and I feel like I'm an old woman. I ache from head to toe and when I touch my muscles they are so painful. The hot sweats don't come at night time anymore but they do in the day time and it's embarrassing at work to have sweat dripping off my nose. The tamoxifen is my safety net and I don't want to let go. I just don't know what to do. 

Hi Ladies, I do understand & completely sympathise with you all !!!!!!

As if having breast ca followed by surgery & then chemo  wasn’t enough we get all these awful side effects from the prescribed drugs.

I was prescribed Anesterole but only took it for 8 weeks as I could barely get out of bed in the mornings and trying to get down the stairs was a nightmare!!!  Due to the agonising pain in my feet, legs, groins, hips and hands. I stopped taking it and informed the oncologist who said my quality of life had to be better than that!!! He said I was a high risk & needed to take something so was prescribed tamoxifen!!! He referred me to Rheumatologist and following several blood tests I was diagnosed with Lupus!!!! That was 4 1/2 years ago!!!. I also saw physio & exercisers helped with back, hip & neck pain, also saw o/T & have had various splints for my hands which can ease the pain a little but it never goes away!!! When it has been really bad I have had 2 steroid injections at different times & this has really helped with all the discomfort!!!. I see a great rheumatologist & had my hand scanned last week as the pain was so unbearable!! I couldn’t even go to work; it showed I had severe swelling & inflammation, so had a steroid injection in my hand this has eased it a little!! But is still there!!! 

I believe it is the Tamoxifen as I stopped taking it for six months to see if there was any difference!!! It did improve the severity of pain but did not completely go!!! I started taking the tamoxifen 4 weeks ago & it has significantly worsened again!!!!.

It really affects everything I do, the thumb pain is the worst as there I little you can do without using your hands!!!! I started taking a course of Methotrexate today!!! Not a nice drug but I can’t cope with this constant pain so have to try something!!!

That sounds terrible! I keep putting off going to the doctors but I guess it's time to go. My Mum has been taking Methatrexate for years got osteoarthritis pain which was really bad and the pain is gone so good luck with that. I will make an appointment today.

Thankyou