Should I feel like this

Hello all,I finished Chemo last April and Rads in July.I am on Arimidex now and Warfarin due to a Thrombosis in my neck (hickman line)

I wake every morning very early with painfull joints and muscles, my fingers are also swollen although these go down as the day goes on.
I get very tired easily and legs feel heavy if I do to much I also have trouble lifting and reaching.
I cannot walk fast anymore and have a fear of falling.
I also get cold now when before treatment was always hot.

I just need to know if this is common and how long could it go on for until I feel Normal again.

I am 51

Thanks

Jackie XX

Hi,

You sound very ‘normal’ to me Jackie. I think when we finish treatment we expect to be as we were before the ordeal began but it takes a long, long time to get back to ‘normal’. I finished my treatment back in Sept 06 and I remember kind of building myself up for this ‘big end’ to it all and actually there was no fanfare of trumpets or anything. I actually got quite depressed and felt almost worse!! A feeling of being abandoned took over for a while…and ‘what now?’…but, that passes gradually.

As for the physical side of things, I can relate to what you describe totally and it will very gradually get better. Don’t rush things…just take it easy. You have been through a lot and your body has had a real hammering so don’t expect too much, too soon.

Sheana x

Arimidex is known to have side effects such as aching joints so maybe it’s that

Thankyou so much for this I will just try to get on with it,although its hard at times.
Help,advice and support is a great help Thankyou again

Jackie x

Hi Sprat! Here we are reading the forum at some unearthly hour, again. All of the above symptoms sound like Arimidex side effects. I’m due to stop taking it in March and one part of me wants to keep taking it for protection but another part of me wants to know what it’s like to have a good nights sleep, no aches and pains and no ‘thermostat’ problems! That is if all of the side effects go when we stop taking the pills. I’ve learned to love these early mornings though, honestly, it can be such a quiet, secret time. X

Hi Chalee
I go back to the consultant in Feb and will have a chat to him,only trouble is I have only been on this for 4 months!! and like you am apprehensive about stopping or changing to another drug.
You say you are stopping it in March have you been on Arimidex for 5 years?

Yes its really nice being up so early especially when its nice outside the neighbours must think Im mad out there at 5 am drinking tea !!!
Thanks for chatting and help x

Hi Sprat
I have been on arimidex for 18 months and seem to have same side affects as you. I too am apprehensive about changing as my oncologist said she can’t say what side effects I may get if I change vicious circle is’nt it.

Hi Pauline

Its a difficult decision to make and after reading the details on arimidex its supposed to be the best for bc,it just seems to be a long time to suffer all the side effects for 5 years.

I take paracetamol when I have really painfull joints suppose I need to take them more often.Do you get better days when you feel you can do more? I do but I tend to suffer the next day.

take care and thanks Jackie X

Hi, I am on arimidex and get many of the symtoms mentioned especially the achy legs and flushes. i do find some days it is better than others. I do something strenuous one day and the next day I am fit for nothing. i finished treat,ment only 2 weeks ago.

Rach xx

Hi I seem to have got away with any hot flushes I am now more cold than anything Pains in arms and sleepless nights are worse for me plus the itchy back.

I do not work at present but cant see me being able to manage it yet as it takes it out of me doing the basic day to day things.Will it get easier !!!

Jackie xxxx

I had really bad joint pain with arimidex, I felt as if my bones would crumble at any moment and I couldnt grip things ( and I was passed fit to work by medical inspector…diferent story) Anyway things began t feel better after a year, then I was switched to tamoxifen tho I cant remember why. Things will hopefully get better but everyone rea differently to all these drugs. But we have to keep taking them.

Rosebud454

Hi Jackie, I have been on arimidex for 18months. I do feel stiffer in the morning. I take glucosamine for my joints.
I think 1500mg per day is the recommended amount. Im also considering taking omega 3 and codliveroil. I also take selenium and vit c, gosh its amazing im not rattling.! Ive started swimming as well, and i dont feel half as bad as some ladies sound taking this hormone drug. Maybe thats just how it affects me. Perhaps i should stop taking all these vitamins for a couple of weeks and test how i feel then!
Hope this helps,
Rosie x

Please can I recommend Rose Hip for stiff joints, I had them on Tamoxifen, it is expensive but the research I read said that it helped twice as many people (percentage wise) as glucosamine. It is £20 for a jar, you have to take a high dose for 3 weeks then a smaller maintenance dose. After the first jar, when I found it worked, I then did a 3 for 2 at Boots, £60, eeek but it then lasts three months (Lit-ozin)

Louise x