I’ve been away for a while but back here selfishly because I am yet again in need of support.
I have been on arimidex now for 8 months and am in so much discomfort from all the joint pain. Taking cod liver oil and glucosimine but can’t say I have noticed any improvement.
Having a bone scan on Tue to see if there are any other reasons (bone mets) for the pains (I have rib pain too)
It’s a very scary time and I am feeling quite low and tearful. Mind you, I haven’t had a full nights sleep since before diagnosis (17 mths ago). This is mainly due to the hot flushes that wake me every hour or so, but once awake the old brain starts going. Considering asking for sleeping pills, even just for a few days so I can catch up,I feel sonked!
Welcome back - you’re not selfish because you need support. We’ve all been there, done it. I’m not on Arimidex, but am on Nolvodex; To start with, everthing was fine, but 7 months in, I am experiencing quite a few side effects. A couple of months ago had severe pain in left hip - sufficient to contact hospital. Had bone scan - completely clear - pain then went away. Of late, have had headaches - obviously brain mets ! Have gone now. Hot flushes come and go and I don’t like the unexpectedness of them - but, I reckon that o.k, didn’t want to be here at 47, but I am and will cope - because that’s what we do IreneM. If you need sleeping pills - go get them girl - what’s the worst that can happen - you get a decent night’s sleep - wake, refreshed and ready to see what the day has in store? Go for it Girl. Once you feel less zonked, I am certain you feel less scared - hopefully less tearful. Keep in touch.
Janeyb
x
Dear IreneM
Poor old thing, I agree that you need something to help you sleep. I am on SSRI antidepressants which helped me hugely during early stages of dealing with diagnosis, treatment and particularly the low mood following menopause and arimidex. They have a marked benefit to sleeping pattern and if I need to top up with something I use valerian in tincture. It tastes vile but works well! I got lots of joint pain with arimidex for a good 2 years…had a bone scan at one point which was fine although again it puts your fear factor up again. Good luck with your scan tomorrow and will be thinking of you
Hi i would definitely ask for sleeping tablets, i havent slept well for ages and have them for emergency stand by, i dont take them every night but i did last night and have slept so well i feel so more positive today and relaxed!!! its worth a try your dealing with alot right now,
Anna
Zopiclone is a good sleeping tablet as it’s not addictive. I don’t take them all the time but just on those nights when I’m still awake at 2.00 a.m. in the morning!
Firstly I wanted to say I have really missed your input on the threads. I have followed your story from when I began mine back in March last year. I also am from Cumbria (in the middle of nowhere!!!).
I’m sorry I can’t give you any ideas to help with the sleep (other than wine, it always works for me!!!).
I understand what you say about the aches and pains though, although I am only having Herceptin I often get the odd twinge and automatically think secondaries! It is very hard and I know prior to BC any ache or pain I had was put to the back of my mind but since BC it’s THERE!!!
All I can advise is talk to your onc or whoever you deal with!
Please don’t think you’re alone 'cos you’re not!!
Hello Janette, thanks for your kind comments. Do you attend Carlisle Hospital? Do you want to reply privately? Maybe we could meet up? Had to stop coming on here because I found I was dwelling on ‘stuff’. Have missed it though and the friends I have made.
My aches are basically everywhere, all my joints from fingers and toes to spine and neck! The only time I have been pain free is in a hot bath and for 10 mins after. Thats ok if I can stand getting hot. Sometimes I have to get out quick coz I feel like I am going to pass out (during a hot flush). I no longer lock the bathroom door and only have a bath when my husband is home so I can shout for help if needed.
I get up out of my seat like and old woman and I’m only 49. I have tried coming off arimidex as my hands seized up over xmas. I was of them for 2 wks and felt exactly the same so doc put me back on them.
I do get quite low at times because I sleep so badly, have continuos aches and other small stuff like very dry skin, no sex drive etc. I am sure it is all linked to oestrogen deprivation, I am becoming an old woman, and I feel very sad about that. Yes I am lucky to still be alive and I am grateful obviously. I have got used to being 2 stone overweight and only having 1 boob, but when I add up all the other stuff, I get so fed up. I am a very independent person, but now I have to ask other half to lift, move and open things for me. I am also worried that my hands are so stiff and sore as i am an artist and feel that if they get much more sore, I’ll have to give up a massive part of my life. Not to mention the difficulties in picking up my 7 mth old grandson.
What a moan! Well I’m off to bed to try and sleep.
Sorry to hear you have so much pain. I’m on Aromasin and Herceptin both of which give me some aches and pains although I’m not in as much pain as you seem to be. I was advised to take Selenium for joint pain and it does seem to help.
I also have dreadful difficulty sleeping, mainly because of the hot flushes and I always have a stock of Zopliclone. I don’t take them every night but I don’t hesitate to take one if I can’t sleep. They’re really good.
Good luck with the bone scan tomorrow. I’ll be keeping my fingers crossed for you.
one of the ladies in a group I attend had had to come off Arimidex because it hugely aggravated her arthritis, it also made her feel very out of sorts and she could not cope with it all, so the onc has stopped it and put her on something else. Another lady in my group has very bad joint pains on Herceptin and it is getting her down as she still has 10 to go.
I had joint pain with the Taxotere which seems to have got worse. I started Herceptin a couple of weeks ago and my joints seem to have got worse. The pain keeps me awake every night, especially in my right wrist and elbow. I have great diffifulty getting downstairs first thing in a morning but that does get easier as the day goes on. It’s hard getting out of the chair and getting upstairs is hard too. I too feel like an old lady and am only 53.
I am still in pain from my reconstruction last June but hoping this time next year it will be okay.
oh id love to feel normal again! thats if i was ever normal in the first place! i too am on arimadex and the joint pains can be horrendous,seems to strike at anytime ,i recently had a bone scan which was clear, i have to take ibuprofin as cant take strong oppiates,they dont touch the pain some days and i could sit and scream like a baby then . im into my second year on them and have spoken to my oncologist about coming off them but shes not happy as the benefits of taking them outwiegh the side effects, so im grinning and bearing it through clenched teeth most days!. if you need sleeping pills do have them your gp should be aware of the side effects of arimadex etc. anything for a good nights sleep ,and you can face the day better . wish you well ,take care lynn x
Irene, I’ve been on Arimidex for 8 months as well. For the last couple of months I’ve had exactly the same symptoms as you, which seem to be getting worse rather than better. I have even started getting pains in the top joints of my my toes for chrissake!!! I went for hip x-rays yesterday as the pain from both hips keep me awake at night. Also, I am having a bone density scan done on 10 April.
At times I can control the pains by taking Dihydrocodeine or Co-codamol 30/500 but can’t use them regularly as they cause severe constipation, so it’s a Catch 22 situ. I can’t take Ibuprofen
Getting really fed up now of having to revolve my life round the aches and pains, can’t make plans in advance, just in case it’s a day where I feel like a cripple.
Don’t want to speak too soon but have had a better few days. Have re-started taking cod liver oil tabs about 3 wks ago, could this be why? Or am I getting used to arimidex as someone else was saying this happened to them.
Still achy but not as severe. Still worse in morn. Still sleeping really badly, will def ask for pills next time I’m at docs.
Bone scan went ok, waiting for results and follow up app with hosp.
Hi Irene and Janette,
I’ve finally found 2 more Cumbrians. I thought I was the only one. I started at Cumberland Infirmary for surgery but am having chemo in Manchester(long story) and will return to Cumbria for RADS and hormone treatment.
Just thought I’d say hello.
Trish
Hi Irene missed you on the forums but un derstand exactly how it can become a bit obsessive then you get weighed down by reading the posts.It is not selfish to take what you need from the forums it is survival. You have been very helpful over the last year and a half to many on here. Hope you get sorted out. Do try zopiclone I sleep very well but always have a pack of zopiclone just in case. Not needed them for ages but feel reassured knowing they’re there. Nowt worse than l lying awake in night with every scenario magnified a million times. Take care love Eileen