Bone pain 12mths on

Trikki2

Hi everyone 
I am on tamoxifen and it has been 12mths since my last chemo. My body is super sore. Hips, elbows etc. I work 2-3 days casually in childcare. This is quite enough for me. I wondered how you guys manage the pain?
Regards
Trikki2 

Sister

@Trikki2 I'm on Letrozole rather than Tamoxifen but the side effects of joint and muscle pain are similar.  When asked to list the sites of the pain I joke that my left shoulder is quite okay - not so much of a joke, really.  I'm not sure that I do manage the pain.  I live with it, and in spite of it, and it is exhausting.  My medications range from panadol to panadeine forte, depending on how bad it is today, and a trusty wheat bag for my legs at night.  Sometimes I go to bed early simply because laying down is the least painful position.  For one blissful week, I took prednisolone, and the impact of that alleviated much of the pain for quite a few weeks afterwards.  Unfortunately, any more than that is likely to have dire effects on bone density.  It has also brought on arthritis in my hands and neck, signs of which were already there but unlikely to have had any real impact on me for years if not for the Letrozole.

Lots of people advocate exercise which I try to do but the effects are hard to anticipate.  Sometimes it really helps, sometimes it can make the pain worse.

I'm off to see a rheumatologist in December (6 month waiting list to get in) and if she doesn't have any good answers, I think my next port of call will be a chronic pain specialist.  The gap for these people is horrendous - I got off quite lightly in the financial stakes during active treatment with regard to what I had to shell out (the fact that I couldn't work is a different story) but the dollars are adding up for dealing with the aftermath.

jennyss

Dear @Trikki2 and @sister, We need another button apart from 'like' and 'awesome'. Something like 'amen', or 'I'm with you there' or 'I hear you' or 'thinking of you' or 'best wishes' or 'sympathy'. After two years on Anastrozole I am getting off very lightly with minor pain in elbow joints and stiff ankles in the morning. Anyway; thanks for posting and

Best wishes from jennyss

Trikki2

Thankyou @jennyss for your love. It is nice to chat to people that know exactly how i am feeling. @Sister, thankyou. Yes you know exactly how i am feeling. I am thinking i will have to get out of childcare and move to a desk job. Sadly. I tried exercise and that didn't go well. My next step pilates. I have an oncol appt in 2 weeks, so will have a chat then. Goodluck lovely xxx
Trikki2 

kezmusc

Hi @Trikki2,

It's a bit of a double edge sword really.  Move too much, get sore,  don't move enough, things get worse and lock up. I I've been on and off Tamoxifen for just over two years now. Lower back and hip pain, elbows, one wrist and every single joint clicks and groans.  The joys of chemo induced menopause and hormone therapy huh? 
I've tried many supplements and pain killers.  I started the "Blackmores joint formula advanced" about 2 weeks ago and it seems to have knocked the pain a bit so we'll see how it goes.  Dear as poison though. 
Apart from that if I can wrangle a script for mersyndol out of my doctors that works well at night for sleeping if things are bad.  
Hugs xoxoxox

iserbrown

@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/

kmakm

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

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 

kezmusc

@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.

Trikki2

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 

youngdogmum

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! 

Sister

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.

iserbrown

@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

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 

Trikki2

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