Too scared to go to bed

I've been on Arimidex  for nearly 2 years. Apart for the vaginal problems, I found the joint pain and stiffness were the worst side effect of Arimidex. Knee and thumb stiffness becasme very disabling - especially when using a mobile phone or computer mouse. In addition to Glucosamine and Chondroitin I started to take 1 x 500mg Krill tablet daily . Wow! Within a week or two my pain was almost gone! I also swim regularly and go to Step and Pump classes to keep my bones healthy adn to keep lympdaema undercontrol. I have more recently started Tai chi exercises for help improve my flexibility. I could not belleive how relaxed I was able to feel  by first session. ( Basically I do a bit of exercise everyday after work, yes, EVERYDAY.)  Last time I had a bone scan 3/12 ago, my bone calcium had actually improved.  Please be encouraged to keep going with your treatment, but you do need to 'tweak'  you life style to survive. This is where you friends, family and personal stamina are so important.  BC is a life changing ilness. Hang in there, Fiona.

Well, it has been two days since starting the arimidex, and so far the pain is subsiding and I am sleeping better.  I next have to conquer the depression which is rendering me feeling rather useless, so have booked an appointment with the GP.  Despite being a closet hippie for years am thinking that a little pick me up is needed to give me a boost, as it isnt very nice being boobless and fat...... just what you were lamenting about Goldie.

Take care everyone

Hi Ladies,,,wow all of the above comments was me when I was taking Arimidex. At night to enable sleep to finally come, I had to press my feet against the wall at the head of the bed. The bone pain in my ankles, legs and knees was continual. Weight gain was horrendous after chemo and Arimidex just added more. Self esteem was low any how being breastless, but breastless and obese was not a good combo!

No matter what exercise I tried the pain was unbearable so no possibility to shed any weight. After searching the internet on various Cancer Support Sites I came upon several women having the same issues with Arimidex. They had all changed to Aromasin and had minimal or no side effects.

Anyhow I also switched to Aromasin twelve months ago. Now I do aerobics class five times per week, swim and stair climb with little pain. Best of all is a 6kg drop in weight. Aromasin like others may only suit some of us but I feel as if I have my life back. Being on a drug for as long as we need to be, it is vital that it does not make life anymore difficult.

From my diagnosis up to now, the support and information sharing from women on the same path has been what has kept me sane and fighting!

Sadly many more to come :)

hi leonie

i too had problems with my shoulder to the point where it became frozen. my gp referred me for cortisone injections, which have worked very well. i have been told it may return but i will definatly have the injection again. a word of warning my gp told me to make sure you have an expert in the field do these injections as apparently anyone can do them and if they are not done right it can be very painful. i live in melbourne and there is a private hospital that invented this proceedure,there are doctors that only to ths proceedure all day everyday. apparently it is also very successful for hips as well. best wishes jenny

Hi Maria, in answer to your question, I was on tamoxifen for 2-3years then straight onto femara (for the last 3-4 months) , no break, and straight on to arimidex.  So I took my first arimidex last night.  I think I slept better, although I did wait until about 2am and then I took a codiene before bed, so maybe I cheated a little. The oncologist has suggested that anti depressents is the only way to go, so will remember you if I do choose to do so.  I am really keen to follow your lead with yoga, so will chat to a breast care nurse at my local hospital. Thanks so much for you comment.

Take care and God bless. Ang

Hi Maria, in answer to your question, I was on tamoxifen for 2-3years then straight onto femara (for the last 3-4 months) , no break, and straight on to arimidex.  So I took my first arimidex last night.  I think I slept better, although I did wait until about 2am and then I took a codiene before bed, so maybe I cheated a little. The oncologist has suggested that anti depressents is the only way to go, so will remember you if I do choose to do so.  I am really keen to follow your lead with yoga, so will chat to a breast care nurse at my local hospital. Thanks so much for you comment.

Take care and God bless. Ang

Hi Leonie,  so glad to hear from you.  It certainly sounds like you have navigated through all of the unpleasantries.  It has reminded me to allow myself time to give my body rest as it needs it and not to be so hard on myself.  I feel terribly guilty that my boys suffer because I just dont have the get up and go to do all the things I used to, but hey, Im alive and that is all that matters.

Hi Seaford jenny, it is concerning that many people report the same thing as you that the doctors usually cant help much with the symptoms, just more drugs. My doc said as the aromatase inhibitors totally deplete oestrogen, this causes a chemical reaction which in turn causes depression and all the other side effects that come along with it.  My doc also said that you can change to a different but same class of drug to see if the side effects lessen, this is due to the fillers in each brand being different and each of us react to them differently.  (feel lilke I am rambling a bit, sorry)  Anyway, It is great to hear of other people experiencing the same things as each other.....it just reminds me that I am not going crazy.  Take care and God bless 

The pain is mangeable - you just need to learn what works for you. Did you have a break from the Femara before you started the Arimidex? My oncologist suggested effexor which is an anti depressant can help with the moods. Also with hot flushes - if you have that problem. I took it to start with but I have chosen not to take it any more. Had enough chemicals thru the chemo. journey.

My joint pain was similar to what you have mentioned but i have learnt what works for me - it is a cycle it comes and goes. Some days are easier than others. Seems hardrer in the mornings, so now i wake earlier and do some specific stretches in bed before i get up. Also when I have been sitting for long periods of time. Like watching a movie, feel like an old old woman all slung over and shuffling, just stiff and sore. I call it my body rust, so if i do not move it gets worse.

As was mentioned exercise is the key. Since having taken up yin yoga (on the floor gentle stretches) I have been so much better and had less joint pain. The other thing i have found that helps me is omega 3 fish oil tablets.

I recall going away for 10 days and forgetting to take them but we did lots of walking - i had no pain. Go figure, so i have tried to walk in the mornings but i get lazy - so back to yin yoga. I also tried meditation called yoga nidra - some hospitals offer it to chemo patients it helps with pain management. Ask the breast care nurses. There may be support right under your nose.

So it seems exercise (whatever works for you) some suppliments and even ask around about accupunture for joint pain. I have had reiki energy healing - many things that pre breast cancer I would not have ever tried. As my husband says - if that mumbo jumbo works for you then learn how to use it. I think like many of us Ang we need to learn to listen to our new body.

So in time it does get better.

All the best

Maria333