Three and a half years out and exhausted!!

Michele B

Hi there,
Do others who are this far out from surgery and radiation (still taking Tamoxifen) suffer from a whole body and mind exhaustion? 
I work as an Early Childhood teacher and have returned to work full time this year, after working four last year.
I don't know if it's the Tamoxifen, my age (57) or the job..or all of the above!! Hard for anyone else to understand just how exhausted I feel?
Cheers!

SoldierCrab

@primek
thought you might be able to help you work full time 

primek

Oh I totally get it. I too was exhausted returning to full time work and needed a nanna nap most dsys. I was so tired I had very poor meal prep for lunches etc and so lived on coffee, cakes and prepared food from our local kiosk. 
I focussed initially on my nutrition. Making a really good effort of eating and prepping nutritious food really helped. I stopped feeling as tired and stopped craving sugary carb foods. I also focussed on getting better sleep. This has been huge. No coffee after 12. No more than 1 quality cup etc etc. Avoid coke. ..even diet if possible as more caffeine.
I had been exercising until back at full time. But after none for a month I wasn't any less  tired. I saw an exercise physiologist and discussed that I feel fine when exercising and go for a few weeks then crash and get so tired can barely stay awake. He suggested I work with less intensity. So now I  push 5-6/10 not 8-9/10. This means I can do it more often and not crash. I focussed initially on weekends and once during the week.  I'm slowly adding in more weight work /less cardio....and as Ive gained muscle mass I feel better. I still do cardio just not only cardio. 
So there was my solution...
Look at your diet...wide varieties of fresh and nourishing foods. Is your weight in hwr? 
Reduce caffeine...more water and better quality sleep (no screens too late either)
Increase exercise with help of a professional. It doesn't happen overnight but in a few months you will improve.  I figured if I could only exercise 3 weeks in 4...well it's better than  none. 

Oh...and if course do have bloods done and check your iron stores and vitamin D. Always good to exclude a simple physical condition first. Kath x

primek

Also this link has some good resources.

https://www.bcna.org.au/health-wellbeing/physical-wellbeing/fatigue/

Kiwi Angel

How have u found the tamoxifen?  I’m due to be starting on that in about a month. 

Michele B

Thanks for the great advice Kath! Comforting to know I'm not the only one struggling with fatigue!! 
I do try and eat healthily. Do a big cook Sunday afternoon to help set me up for the week. I do well for the first few days but then get so tired I just crave sugar and coffee. Cutting back on both of these will be a priority!
I'm a bit the same with exercise, start off well, exercising on the weekends, then as week wears on, just can't even force myself. 
I struggle with insomnia, get off to sleep easily but wake up around 1 or 2 then lay awake for hours. Fall into another nice deep sleep just as the alarm goes off!!!
Anyway, I ll try to refocus, cut the caffeine and sugar and drag my backside out for a walk!!
Thanks again,
Michele

Michele B

Hi Kiwi Angel
I think I have been fairly lucky with Tamoxifen. Digestive issues, some hot flushes but not drastic, fatigue has by far been my biggest issue. Good luck with it, I hope you have minimal side effects!

iserbrown

@Michele B we are at a similar timeframe and fatigue is still my enemy.  My latest blood test suggests my thyroid medication needs upping so I am hoping that will help!  Tomorrow I see the Oncologist and he will be changing me from Tamoxifen to something else.  All steps that I hope will improve the fatigue and for me have the energy to get through the day without feeling like shite
Kath has said 5-6/10 not 8-9/10 - there's a lot in that!  Small steps and I am sure you will get there.
Take care

Michele B

Thanks for your response, iserbrown. First time I have actually posted  but have always been amazed at the amount of support on here. Nobody understands like someone who is walking in the same shoes!! I have just had more blood done too, so I'm hoping they might show  something that can be done to help increase energy levels. I think we do set ourselves high expectations and I think I just need to do as you suggest and just take it slowly. Hope all goes well for you with the change from Tamoxifen. I know it is a great drug,  it helps keep us here but certainly not without its downfalls.
Thanks again for your support,  take care!

primek

I was also wondering about you being on tamoxifen. I'm guessing at 57 you might be through menopause and might be time to switch to an aramatose inhibitor? 

JanineG

That was my thought too @ primek. I started on tamoxifen @Michele B, found it made me mentally foggy and so tired. I changed to arimidex and find I'm clear headed but yes still exhausted. I work full time too and find time management is essential. My half day is a Monday and I try and make several meals plus my weeks worth of lunches,(usually hearty veg soup). I try to have enough for extra meals in the freezer for nights that I'm just too tired. That stops the takeaway temptation. I'm beginning my third year. Always tired but still here all the best x

Brenda5

I was really tired on Tamoxifen and thought it was ONLY that but since my super ventricular cardiac incident of 180 beats per minute and now on medication for it I feel lethargic but not tired. I got a blood pressure monitor called color doctor for about $50 and in a minute on my wrist like watch it tells my heart rate and blood pressure and usually flashes up green. Only once it has gone to amber and I have had to increase my medication dose and now all good.
Not saying you have any heart troubles but the monitor could be a good investment to put your mind at ease.

Romla

Apart from treatment side effects two things come to mind that may be worth a chat to your onc about .

I don’t know why but I seem to know a lot of post menopausal women who have thyroid problems signalled by acute tiredness and end up on thyroxin.

Have you had your iron and folic acid levels checked ? Both of these If deficient cause anaemia causing fatigue.

i agree with @primek  about querying why you are not on an Aromatase Inhibitor if you are postmenopausal.

Johnann

Hi everyone, I was diagnosed in Jan 2015 was on tamoxifen and now on arimidex. Still suffer from fatigue but with arimidex a lot of joint and bone pain. I do take comfort that I not alone and wondered how others have coped with full time work. I find my work has forgotten what I’ve gone through and that I’m going to be on medication for another five years. I’m over loaded with so many tasks. Any suggestions or advice would be wonderful. Don’t get me wrong I’m enjoying life just work is getting me down. 

Michele B

Thanks Primek and Janine G. My oncologist said he would like me on tamoxifen for first five years (even tho I was already thru menopause at diagnosi) and then maybe 5 years on Arimidex. Might ask what he thinks when I go back in September, pretty tricky being  foggy headed and tired when you are trying to teach 6 and 7 year olds!
I do try and get organized on a Sunday afternoon, JanineG. Having a big pot of soup in the fridge and a couple of casseroles or similar does make it easier to manage. Have been caught out a couple of times when I've had a weekend away and have paid for it that week!
Thanks for your support. As you say, we may be tired but at least we are still here. X

Michele B

Hi Johnann

Others here have given me some really great advice and I must say this past week or so, I do seem to have coped a little better.  Have been making a real effort to go for a walk most days, and trying to eat well.  Also taking Vit D supplements, Berocca daily and magnesium.  Not sure which is helping, or whether it is mind over matter but at least I am getting through most days a little easier.

I get your difficulty with work.  My work have been super supportive, but like you, I think that now I am 3 1/2 years out they just expect me to be back to my old self with the same energy I used to have.  Very difficult, because I certainly don't want anyone to think I am using my condition as a cop out but at the same time, I am certainly not the same person I was before this.  Hard for others to understand that it is not just like getting over the flu or something.  Ongoing treatment means we are coping with side effects etc.  I am lucky that I have a couple of colleagues who are amazingly supportive and have my back if I am having a particularly difficult day.  Best of luck xx