Bone pain 12mths on

So i had my oncol appt today.  He is sending me for a bone scan to rule out any cancer. If that is ok then i will have 6 weeks off tamoxifen to see if the pain subsides. I'm  going with the tamoxifen option. Stupid cancer.  Xx
Trikki2 

Hahah yea some days i am 100 years old too. At least i can say i will know how i will and will do it with grace. ( insert sarcasm) 
Xxxx Trikki2 

@youngdogmum 
Your comment made me smile!  Whenever I have been in the car for a period of time and I get out, mind you step out as it is a SUV, I struggle to walk, like you commented for 5 or 6 steps and I feel myself going red with embarrassment as I feel like a little old lady!  It's a so and so but I do need to laugh it off!  I know no-one is looking at me but it is just me feeling so frustrated with it all!

Take care

I hope that it stays at that level for you @youngdogmum - I know there's people who have no more than that.  

The article in the recent BCNA newsletter annoyed me (possibly, unfairly) - listing the bad side effects of AIs but not a mention of joint/muscle pain.

I’ve been on letrozole for a month and agree if I don’t move enough I get quite “stiff”. After sitting on couch for ~ hour or when I get up in the morning I have to walk super slowly for 5-6 steps and then I loosen up as if someone’s oiled me! 

It sucks so much. Im sorry for you too. Yes the costs are ridiculous. I don't know how we can sustain this forever. I hate that people dont have an understanding of our pain. Grrr . Rant over lol 
Hugs Trikki2 

@kmakm,

This just freakin sux.  I do not know how you manage quite honestly.  Mine is not quite as bad as that. However, the you beauty blackmores supplements I bought were $60 for petes sake. That will only last a month.  Can't afford massages, accupuncture was a waste of $600 I didn't need to throw away. I am supposed to have an MRI on my back but every sent I earn at the moment is going in horse feed and water so that's still on the back burner.  I litterally do not have the bank account to keep trying shit that does nothing to compete with these hard core HT drugs.  I too have borrowed money of my mother to have a few small luxuries. I am saving up for another new softer mattress (my gosh these things are expensive) this will be number three in three years so I don't go ass up when I forget things no longer work like they did and lock up. I spent yesterday on the end of a crowbar shifting posts that have moved 6 inches with the drought and can hardly walk today.  Things that only a couple of years ago would not have caused me to flinch. Nothing is different to what I have done for the last 15 yrs. It's crap you have to think how sore you are going to be tomorrow before you start todays work. Blah. 
  As far as Tamoxifen goes, the jury is out on how long is ok. It seems a month is fine and depending on what you read anything up to three months...who bloody knows. Unfortunately, the longer you take this thing the longer it takes to return to somewhat "normal".  Yada yada  yada......Phooey.

xoxoxo hugs to all.

Thanks for sharing your stories and thoughtful  comments. We are all in the same horrible boat i see. But it's better than not being here at all. I shall attempt the pilates, i will get some magnesium too and try some other of your strategies. Thanks 
Trikki2 xoxox 

Letrozole here too @Trikki2. Like @Sister I'm living with it rather than fighting it. Nothing has substantially worked for me. Some have success with acupuncture but it didn't work for me. I have 24/7 ankle pain, and at night when I'm in bed I feel bone and joint pain through my entire legs into my hips. I'm also have great pain now in my forearms and elbows, tennis elbow and golfer's elbow both my GP said. This has affected my ability to carry heavy things on my left. My hands, affected by chemo haven't recovered and are still weak and frequently painful.

So I'm managing all this with a fortnightly osteo appointment which brings some relief for 24 - 48 hours. I take panadol osteo as a matter of course before bed (I've never been a pill popper so I hate this but it can take the edge off enough to stop me tossing and turning for an hour. Half an hour instead...), with the occasional stronger painkiller when the pain is particularly bad, or when I just need a goddamn break.

Nothing I take ever knocks out the ankle pain though. Heat helps. Hot water bottles, wheatbags, and I'm looking at getting a heat lamp. Magnesium flakes baths are a nice relief from time to time. Treating myself to an occasional massage is a good relief, mentally as well as physically.

Exercise, like many above have found, is a mixed bag. Sometimes it helps, sometimes it makes the pain much, much worse. I'm doing pilates and yoga, good for my muscles, bones, waistline, stress, and in theory, taking strain off the joints by building up the musculature around them.

I don't know what the protocol around Tamoxifen breaks is, but you can take a one to two month break on AIs, so with my oncologist's blessing I'm taking two month break in December & January. I'm planning to do this after the completion of every 12 months of taking the drug. It has no effect on outcome.

As @Sister says, managing post-active treatment care is very rough on the bank account. Massage vouchers are always on my birthday and Christmas wishlists! The reality for us though is that we can't afford all this and I'm only able to do it with financial assistance from my mother. All our reserves are gone. There is literally $13 in our 'cushion' account... I've told the kids we're on an austerity drive for at least the next twelve months to build it up. We're trying to find a balance of keeping me cancer free, functional, and not broke. Best of luck. K xox

@Trikki2 

There's a BCNA Pilates DVD here on the website, divided into sessions - maybe worth a try - I originally received mine in a little backpack with my Berlei Bra from the Breast care nurse

My Onc suggested Panadol Osteo as the aches are with me but not as intense as the body has adjusted  

Hope the link helps

https://www.bcna.org.au/health-wellbeing/strengthen-your-recovery/