Joint and muscle pain

Hi everyone,
Just wondering if anyone has suffered really bad joint pain following treatment. I am now 2 weeks post rads.
I am waking up a couple of times a night in pain.
I have started to take calcium tablets to try and strengthen my bones, but wondered what I could take for the muscles and joints.
Thanks in anticipation.
Debbie. xx

Hi Debbie,

I also suffer from joint pain, especially at night. My back, ribs and my hips are especially bad. I think this is an SE of Tamoxifen. I am 8 weeks post rads and have been taking Tamoxifen since December. My GP and I are trying various drugs to help - including Tramadol at bedtime and a water pill in the morning as he thinks the pain may be due to fluid around the joints. So far, they’re helping, but I still wouldn’t say I am getting a good night’s sleep.

You should go and see your GP if your pain doesn’t subside.

E xx

Hi Debbie,

I had quite a bit of joint stiffness and some pain with tamoxifen when I started it. I now take glucosamine & chondroitin and that has helped considerably. I checked first with my bcn and she said that a lot of women on tamoxifen take it and report back favourably. It might be worth speaking to yours as well as your GP; I know our bcns are happy to chat through anecdotal evidence from other women (actually so is my onc, but I think that isn’t so common).

Eliza xx

Hi E - if your joint pain is so bad that you need a drug like Tramadol to help with it I think you should be seeing a rheumatologist- or if your GP doesn’t think your joint pain is caused by arthritis I think you should ask to be referred back to your oncologist. Maybe your GP is exceptional but I don’t think most of them know too much about the after-effects/side effects of BC treatment. If your joint pain is so severe, glucosamine certainly won’t make any difference.
I have existing arthritis which has worsened since going on Arimidex ( I am due to have shoulder joint replacement surgery next month)
I have taken cod liver oil, glocosamine etc for years and am now on co-codamol at night when the pain is worst.

Thanks for your comments ladies.
I am triple negative so don’t take any hormone replacements.
If it gets no better I will go and see my GP.
My next oncology appointment is in June, so will ask him if no luck at GP’s. Maybe he can help?
Debbie. xx

Hi

I’m another joint pain sufferer, except it’s not just the joints, all the bits in between ache too - bones, muscles! I believe its an after effect of chemo and should wear off in time. I feel like an old woman some times, especially first thing in the morning when I hobble to the loo! It sometimes wakes me up in the night too. My doc suggested tramadol but it can make you woozy and sleepy and unable to drive so I’m on Naproxen instead which deosn’t get rid of the pain totally but it helps and I can top up with paracetemol if I need to. What I find now is that I’m getting used to being in constant pain but I just try to ignore it and do as much as I can in spite of it. Mind over matter? I do find swimming helps, the first few lengths hurt but then the pain goes, and the club i use has sauna and steam rooms which also help a lot and by the time I leave I have no pain!!.. for a while! Like Debbie I am also triple negative and not on hormone therapy. Yes go and see your GP, mine has been brilliant.

Dae x

Hi

I am also triple negative and suffer from joint pain, especially in the hips. Sometimes it keeps me awake at night and is painful going up stairs. I have had a bone scan which was clear. But the oncologist is still not sure what it is. She doesn’t think it is an effect of the chemo itself, more likely menopausal symptoms or possibly arthritis. Anyway, I never suffered from problems like this before diagnosis of BC, so who knows…!

Hi Topsymo,

Thanks for your advice re seeing a rheumatologist. I was diagnosed with Hypermobility Syndrome 6 years ago as I had unexplained joint pain then. That was relieved by a combinationm of losing weight, going to the gym to strengthen the muscles around the joints that were lax, and also taking the odd paracetamol on a bad day. Since taking Tamoxifen, the joint pains have got much worse to the point that I cannot sleep comfortably and paracetamol doesn’t touch it at all. I have an appointment with my onc tomorrow and I think my GP is just trying to improve things for me until I could get to that appointment.

I have a personal theory about why Tamoxifen might have this effect. It acts as an anti-oestrogen in some ways, such as the cells in the breast, but in pre-menopausal women it also acts as oestrogen on other vells like the uterus and bones which is why it can cause unterine cancer. I think it is acting that way on my joints as oestrogen increases joint flexibility and in my case that equals pain. I haven’t found anyone else with joint hypermobility and bc and taking Tamoxifen to test this theory.

It will be interesting to see what the onc thinks and what he suggests as Tramadol is definitely not a good long term solution.

E xx

Hi

Well, I’ve just had the worst day so far as far as joint pains are concerned. Had a bad night last night, in spite of painkillers, but today one of my knees in particular has throbbed badly all day, enough to make me limp, also the rest of my body aching too. i feel totally washed out with it and I had been feeling pretty good in spite of the pain. If it goes on like this I may have to succumb to the stronger painkillers suggested by the onc, I had hoped to avoid them. Does anyone know how long after chemo ends these pains last? mine are getting worse not better and I finished chemo early dec. I felt so conspicuous today, now the warmer weather is here and my hair is 1/2 inch long, I went to work today wigless. I think I gave them all a shock! They’d better get used to it cos I’m fed up of the wig, also hoping the Vitamin D will make the hair grow quicker!

Off to make a cuppa and put my feet up for a bit, the dog is whining for a walk but no can do at the moment!!

Dae x

i all, ive got joint and muscle pain that i have been putting down to the letrozole but i went to see the gp today and apparently he thinks i may be having a bout of rhumatoid arthritis!!!(i have sjrogrens syndrome as well)im having a bone scan tomorrow at salford royal hosp so we shall see if it is anything else!!!
sue

I have read that if you take Calcium , it can deposit itself in bones and joints. This leads to pain and inflammation. However if you take Magnesium along with Calcium it counteracts this. I have been on Calcium and Tamoxifin 18 months , have had awful pain but since I have been taking the Magnesium I am so much better . I have only been taking Mag about a month so it has worked quite quickly for me.
If any of you decide to give it a go , perhaps you would let me know how you get on.
Corsa

Hi Corsa, maybe I should stop taking the calcium and see if it makes a difference. I thought I was doing myself a favour??
Debbie. xxx

I sometime have knee problems and stick to one a day cod liver oil. My OH takes glucosamine and I tried it for a few weeks, but it made my knees stiffer so I stopped it. Apparently not everyone is OK with glucosamine supplements.

A combination tablet of glucosamine, chondroiton and MSM works really well for me. You can get it from ASDA, and must be elsewhere, but I have not seen it anywhere else.

Hi Moser, what is MSM???
Thanks. Debbie. x

My Oncologist has suggested glucosamine might help with my joint aches and pains. I think I’ll look for the combination that Moser mentions.

L x

Hi, MSM is methyl Sulphonyl methane. Sounds vile, but seems to work.