Hi all
I unfortunately am suffering from horrendous joint & muscle pain even after 18 months on letrozole.
My question is has anyone suffering from SE had a sports massage?
I’m considering having one to try & ease the muscle pain in particular.
Any help much appreciated 
Hi
First of all thank you for sharing.
I am in exactly the same position as you. I’m 15 months into letrozole and I also have such bad joint pain. If you do have a sports massage please let me know if you find relief from it
I was told by the Dr at the menopause clinic that symptoms get better after 2 years.
Have you found that you’re having other symptoms? All the menopausal symptoms seem to be exacerbated since taking letrozole
Take care
Lynn 
I did 8 months on this hideous drug and then switched to Exemestane. Both had the same side effects of sleeplessness, excruciating pain in my limbs, tiredness and complete loss of zest for life. I have given them both up. They provide a maximum of 3% extra protection and for me there was little point in giving up living to stay alive. In fairness I should add that many people do NOT experience side effects.
Two years? Only a doctor could say that. More than time that new drugs were developed. Current cancer treatment sometimes borders on the barbarous.
Hi
Yes, I feel like I’m reliving menopause 
the flashes I can cope with, but the low mood & sleeplessness is worse.
I’ll let you know if I have massage whether it helps.
Take care of yourself
It’s interesting - i wonder which side effects they mean - was it joint pain or hot flushes ? . I was told that joint pains often settled down after 3 months . Then when I told another BCN that I was struggling with them she said 6 months . Being told different things gave me trust issues and I was a very low risk and after 5 months decided I wasn’t going to wait any longer and stopped. That was my personal decision because I was very low risk and have other medical problems - I felt that the risk from AI exacerbating those was greater than from the breast cancer.
From the conversations on this forum and in real life at the support groups I meet with I’ve come to the conclusion that some of the other menopausal side effects do settle down after 6 months or so for some people but if you have joint pains ( not everyone does ) they aren’t likely to go away . Some people have benefitted by changing brands though or been helped by a particular supplement . I have a friend who stopped Letrozole due to joint pains which were preventing her from doing her job but she’s been taking Exemestane for 2 years now - she isn’t symptom free but she says it’s manageable .
Hi yes I’m exactly the same.
I started menopause when I was 40. I basically had a blood test at 41 which showed I was menopausal. And I started hrt patches.
I stayed on those for 18 years until my bc diagnosis last year. Since then having withdrawal symptoms from the HRT and then starting letrozole in aug last year has caused so many problems. The sleeplessness, joint pain, hot flushes, and vaginal atrophy have been the main symptoms. My hair has definitely thinned but I’m lucky as I do have thick hair naturally.
It’s just a lot
But I know I’m lucky in other ways
Lynn
Hi @Nijan
I’ve been on Letrozole for 10 months and tried a couple of brands. I have joint and muscle pains and recently had an MRI on my neck due to the pain. It was clear of anything nasty but it confirmed I had 2 bulging discs which can happen with age.
I have questioned whether the pain would be less if it were not for the Letrozole and am speaking to oncology in a couple of weeks and will ask again.
I have been having aromatherapy massages since February originally for wellbeing but it’s been invaluable for my aches and pains. The lady is also sports massage trained so she will dig in deep where needed. She also changes the essential oils depending on my need, the weather, the way I’m feeling etc. I have one a month and my neck muscles are always tight. I massaged them at home but it’s not the same.
I always think it’s worth a try.
Forgot to say that I’ve been seeing an Osteopath off and on for quite a few years and have found her treatments very helpful for anything MSK related no matter the body part or the cause . For a while I was doing a Somatic Yoga class run by a Yoga teacher who was herself recovering from BC . It was much less active then my other classes - we were mainly lying down using breathing combined with movement to release tension and I did get some benefit from that . Xx
Hiya.
I’ve just had CT scans to rule out any recurrence, which thankfully there isn’t.
There was however degeneration in hips, pelvis, spine, shoulder & knee. Endocrine nurse says a combination of meds & age.
I’ve history of osteoarthritis, spondylolisthesis & hypermobility so am used to pain. This is however a different level.
I really hope the massage will help xx
I found acupuncture helped by almost eliminating hot flushes, I then moved to taking Anastrozole in the morning which seems to have improved my sleep 
Hi
I haven’t thought about acupuncture
May have to look into that.
Thank you
Lynn
Hi @Nijan I’ve been on Letrozole since February 2022. Yesterday, I had steroid injections in my knees that’s how bad the pain is, after I had an MRI that showed a lot of inflammation. I have to stay on Letrozole for another 5 years so I need to have regular injections. I was on very strong painkillers but decided that I don’t want to take omeprazole in order to take the painkiller. The omeprazole is not good for the bone density. In the beginning I had flare ups for about two weeks and after it went away … but more recently the pain is all the time. It’s absolutely horrendous…my oncologist wants me to stay on the Letrozole so I don’t have much choice in the matter. The rheumatologist I saw told me all that inflammation around teh knee can cause so much more damage than the steroids…and honestly, I don’t want to be in constant pain any longer…
I did try acupuncture too but unfortunately, without much luck so yeah I just can’t live my life like that anymore.
The hot flushes and the other menopausal symptoms are also bad but I am 46 and couldn’t even climb the stairs in the morning. I was like a robot and even in bed during the night the pain was always there…
I’ve also tried different brands currently on Femara but again with no luck.
It’s early days still but I am really hoping for some relief!!
Oh you poor thing!! I guess your o co wants tou to stay on letrozole because of your young age. At the end of the day we are allowed to say no. Esp when its no to life changing pain. I was intrigued to read about the 3% protection letrozole gives and would urge you to work with your gp and chemist to maintain the same manufacturer, and to try taking it at diff times (if you havent already triied). My surgeon has referred me for a local anaesthetic injection because I cant have steroids injected. Maybe ask for that? Fingers and legs.all crossed for you, dear lady ,
Hi @debsterp thank you for your kind words 
I did try different times of day and brands, currently on Femara but I have to wait longer as the pharmacy needs to order it especially for me which sometimes can be a bit frustrating…not that it’s making much difference tbh!
I was 43 when first diagnosed with very advanced and invasive Lobular breast cancer. Very big tumor 12.5 cm and 3 lymph nodes involvement so I am very anxious and scared of reoccurrence. I’ve got a daughter at uni and a son currently in year 11 and I want to be here for them as long as possible…
I haven’t heard about the local anaesthetic injections can you tell me a bit more about this?
Many thanks and take care. Xxx
I have been having acupuncture all through treatments and it has been brilliant. I am on anastrozole (plus verzenio) and only challenge is joint pain. I was prescribed the vitamin Glucosamine Sulphate to help but they say it takes a few months to see it working. Weight bearing exercise also v helpful for joint pain.
Overall my symptoms are due to oestrogen being stripped from my body and symptoms are menopausal really but would prefer these than a recurrence given that I was strongly oestrogen positive. Anyway to prevent the dreaded C coming back!
Hi @mun4o
It really is hard to push through at times isn’t it. I’m 56 and oncologist has said 5-7 years of Letrozole. I
I can only get accord brand so am stuck with it. I also tried acupuncture but like you the outcomes weren’t what I’d hoped.
I will see if massage helps and will be pushing for copy of CT scans to be given to GP in the hope I can be referred to rheumatology.
Stay strong, easier said than done sometimes.
Take care, hugs xx
I had excruciating joint pain in my feet so bad I couldn’t walk on anastrozole so switched to letrozole, 6 months exactly the same thing happened. Had a break for a month and it eased so am now on tamoxifen and so far so much better and just night sweats and tiredness which I can deal with. I’ve decided if it happens again I’m taking the risk and coming off as you have to balance quality of life. Started yoga which is really helping. I’m not sure psychologically having a break was good as I felt my normal self after 3 years of hell. In my mind aiming for 5 years but it’s not easy. Big hugs to all fellow sufferers. People think chemo is hard but I felt the anti cancer treatment especially neratinib harder as less support xx
You could try finding a small independent Pharmacy - the bigger chains order in bulk whatever is cheapest and to fill demand as they have a lot of patients but the independent ones can sometimes order in specially . However it’s difficult to know what to ask for if you’ve only been able to try the one brand so far - I was on Anastrozole and Pharmacy2U only ever sent Teva . Xx
Hi wow yes that was a serious diagnosis. And a young family, well, a family, its always harder in that situation I feel ( no kides here; aged 50 at diagnosis, nown58 and into year3 of secondary).
I seem to have developed inflammation at the site of my secondary ie. my left hip. Normal treatment - for joints - is a steroid injection. But I caught Staphylococcus Aureua during my surgery 2 1/2 years ago. So that infection means I cannot have steroid injection - well, am due to have a biopsy at the same as the injection to make sure its not a recurrrence of the staph infection - so instead of steroid it will be a local anaesthetic. Havent had the injection yet so cant tell you about that. But hey, no harm in you asking for it, and see what they say. I do wish you lots of luck with it all x