How do you cope with long-term fatigue?

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cfdr
cfdr Member Posts: 549
edited November 2015 in Life After Breast Cancer

I would like to know what others are dealing with in terms of fatigue. Supposedly around 1/3 of BC survivors experience moderate to severe ongoing fatigue. 

I am 2 years and 3 months out from treatment, but still experiencing significant fatigue. Some days are so-so, some are close to normal, and others are just awful. It seems to come in waves for no apparent reason. I also have pernicious anemia, which causes fatigue, and am on B12 shots for that.

I exercise regularly (walk/run on the treadmill, hiking, PT exercises for my shoulders), do tai chi, do yoga, meditate. Eat healthy for the most part...wine and cookies are my downfall. Abstaining from alcohol makes no difference in my fatigue, though...you'd think it would but I found that staying away made zero difference in my fatigue. I try to keep anti-inflammatory and anti-cancer foods to my diet, so lots of turmeric, cinnamon, garlic, tart cherries, etc.

I was on antidepressants (lexapro) for a while but they did nothing (and fatigue is a side effect!). I've been taking ritalin on and off, and it seemed to be helping, but either it was placebo effect or I've built up a tolerance because it doesn't seem to help anymore. I don't feel like I'm depressed--my mood is fine when I'm not fatigued, and if I don't have anything pressing to accomplish, then my mood is OK even when I'm fatigued. I do get very sad and frustrated, though, on days like today when I'm exhausted by 10:30 in the morning and had hoped to get a full day's work in and then make a simple dinner.

I've made appointments for April for acupuncture and polarity. I'm skeptical but I'll try anything! Already tried Reiki and found it to be a waste of time. 

I've gotten better at not spiralling downward...it's bad enough to be
fatigued without adding "OMG I have a deadline for work how will I
ever get it done" and "If I can't get on the ball and get this work done
I'll be broke" (I'm self-employed) and "I'm going to disappoint my husband with a lousy half-assed attempt at dinner" on top of it. Now I try to stay mindful, let the fatigue
take its course, and distract myself with a book or a round of Candy
Crush Saga. If I'm more physically tired that mentally, I lie on
the sofa and work on my laptop. If I can't focus but have some physical
energy, I go for a walk or do some cooking and cleaning.

I'm interested to know what others do in order to cope with the fatigue, or if you have found any magic bullets that have helped you overcome it.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2014

    I would like to know too. I think if fatigue is my only SE then I shouldn't complain. I look healthy and feel good most of the time except for the fatigue. I'm tired of being told it's because I have small children and bc. 

    I feel more in tune now that I've reduced my Effexor. If I get too tired, I cry and have negative thoughts. Housework is last on the list. Crockpot meals so we can eat a couple meals are my best friend. 

    I could eat better. I crave sugar and caffeine if I'm getting tired. Walking doesn't wear me out but going to the gym does. So exercise is a two edged sword. 

    I still nap most days. If I could sleep all night, I imagine that would be the best medicine. Too scared to take sleep aids. 

    DH very supportive of dirty house and crappy meals. Helps out some if not working. He's self employed too. Kids too little to be very involved in extra curricular activities. 

    I just have to pick and choose. Try to keep Mondays free for recoup time after the weekend home with kids. If boy has an activity at night, then try not to plan anything the next day. 

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  • cfdr
    cfdr Member Posts: 549
    edited June 2014

    "Recoup time" is a good idea. I find it takes me a really long time to bounce back from anything. I should not make big plans for Mondays if I have a busy weekend.

    Lately I've been getting acupuncture and it seems to help. I've also started taking B12 sublinguals 2x/day in addition to my shots.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2014

    I'm on mega dose of Vit D. I can tell when it wears off towards end of the week. 

    I have jin shin treatments that always help. 

    Also a big candy crush fan. Unfortunately I'm stuck at level 165 and have been forever. 

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  • cfdr
    cfdr Member Posts: 549
    edited June 2014

    What is jin shin?

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  • rozem
    rozem Member Posts: 1,375
    edited June 2014

    cfdr. I have on going fatigue. Im 2.5 yrs out of my last chemo

    I do ok most days then i just hit the wall. Seriously on those days i could sleep 12hr s ( but who can do that). I have to pace myself too. Ive taken a job (a lot less pay) that gives me some flexibility because i dont think i can do the 8-5 grind anymore. I could nap most days! 

    I dont have any real suggestions just wanted u to know you're not aline 

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2014

    Jin Shin Jyutsu® is the ancient Art of harmonizing the body's energetic system. Originating from Japan, the name Jin Shin Jyutsu literally translates to “The Art of the Creator through Compassionate Man”.

    http://m.youtube.com/watch?list=PL3R1sIQwcvVdQKSwX...

    It helped me all thru treatments. 

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  • Ninja6812
    Ninja6812 Member Posts: 31
    edited June 2014

     I'm a lurker and popped on tonight looking for answers. I'm 54 and last radiation treatment was 3/21/12 so I guess I'm   1 year 3 months post treatment. I too am struggling with mental/physical fatigue, muscle & joint pain, and my job is kicking my ass. I use all my energy for work and live for the evenings and weekends so I can rest up for another week at work. You seem to be doing everything right and you are still tired. Had myself a pity party in my room tonight and had a good cry. DH asked if I was okay and told him for the 700th time that I feel tired and old. His reply was, you are older. But I feel like the cancer treatment has added 10 years on me. Will this ever end? Looking for some hope that there is light at the end of the tunnel. Had my annual exams with pcp & oncologist and all my tests came back stellar and I'm Si grateful for that. But.... I keep thinking that my cancer will come back because I push myself so hard.  I feel for all of you going through this. People don't understand and I think the expectation is that cancer is gone and I should be back to normal. What is normal anymore?

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  • Ninja6812
    Ninja6812 Member Posts: 31
    edited June 2014

     I'm a lurker and popped on tonight looking for answers. I'm 54 and last radiation treatment was 3/21/12 so I guess I'm   1 year 3 months post treatment. I too am struggling with mental/physical fatigue, muscle & joint pain, and my job is kicking my ass. I use all my energy for work and live for the evenings and weekends so I can rest up for another week at work. You seem to be doing everything right and you are still tired. Had myself a pity party in my room tonight and had a good cry. DH asked if I was okay and told him for the 700th time that I feel tired and old. His reply was, you are older. But I feel like the cancer treatment has added 10 years on me. Will this ever end? Looking for some hope that there is light at the end of the tunnel. Had my annual exams with pcp & oncologist and all my tests came back stellar and I'm Si grateful for that. But.... I keep thinking that my cancer will come back because I push myself so hard.  I feel for all of you going through this. People don't understand and I think the expectation is that cancer is gone and I should be back to normal. What is normal anymore?

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2014

    I am so in your shoes Ninja. The more tired I am, the more I cry. I bet your hormone is making you achy. But you gotta suck it up since it's working so well for you. 

    Can you reduce your expectations? House less clean, more meals from box, bag or can? Is your job an 8 hour shift? Can you rest at lunch? 

    Have you had your vitamin levels checked? My vit d was at the low end. I can tell a difference with my rx. 

    I feel better if I make time for myself to do my stretches before the day starts. Also clutter wears me out. Trying to slowly clear it out. Set the timer for 15 min and then quit. 

    Good luck. Sorry there isn't a one size fits all solution. Hang in there. We're here for you. 

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  • Ninja6812
    Ninja6812 Member Posts: 31
    edited June 2014

    Thank you Zills! It's good to get feedback and appreciate everyone who is willing to share. I'm an insurance agent and work much harder than i should. So many changes in technology that my brain is fried at the end of the day. Understaffed and Ive been there longest so im fast and the go to person for questions from others. 

     My labs are all very good and vitamin levels look better than before cancer. My pcp said "I'm perfect!" ha ha! For so long now I have remained positive and my motto is one day at a time. I guess I want to start thinking a little more than a day. Set some goals but too tired to. Wah! Wah! Wah!  Feel like such a whiner. I'm sucking it up with a little help from pain meds. I wait til I get home from work and take so I can get a few things done at night and reduce pain. BUT the Arimidex is doing the job so shouldn't complain.  

    What would be ideal is to work part time, but husband self employed and his contract work has been slow. I work for health benefits for my family and to help with college. Oldest daughter just graduated and youngest will in 3 years. It makes me sad that my life is work.rest.work. However, I'm grateful to be alive. Just gotta get out of this rut. 

    I will try the stretches in the morning. Thanks for listening to me :)

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  • cfdr
    cfdr Member Posts: 549
    edited June 2014

    It bugs me when someone says "well you know we're all getting older". On my 53rd birthday, I felt 10 years older than I did when I turned 43. When I turned 53 and a half, I felt 10 years older than I did on my 53rd birthday. 

    Not the same as normal aging. Not the same at all.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited June 2014

    Nope it's not the same.  Lack of quality sleep, weather changes and too much salt (junk food) contribute to my grumpiness. I read that fish oil is good for our skin. I need to try something. 

    My DH is self employed too and we have two small ones. I don't think I'll be going back to work. Puts more pressure on him though. I've always worked and had the ins.

    I was a preschool teacher. I don't want to be too tired to take care of my own. 

    I'd like to learn tai chi. I think it would help start my day on the right foot. 

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  • rozem
    rozem Member Posts: 1,375
    edited June 2014

    its the hormone therapy for me i think. I never get enuf rest

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  • rozem
    rozem Member Posts: 1,375
    edited June 2014

    i forgot to say get your iron checked. Mine was very low and i did feel better once i started iron pills

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2014

    As all your posts reinforce, you're definitely not alone! The main Breastcancer.org's section on Fatigue says "Fatigue is the most common side effect of breast cancer treatment. Some
    doctors estimate that 9 out of 10 people experience some fatigue during
    treatment."

    The site also includes lists of BC treatments and medications that can cause fatigue. Fortunately there's also the Managing Fatigue section, with several suggestions that may be helpful.

    Best wishes,

    • The Mods

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  • Ninja6812
    Ninja6812 Member Posts: 31
    edited June 2014

    CFDR - so agree! Hubby says this to me all the time. I think he is trying to validate my feelings empathizing with my fatigue but it just ticks me off. 

    Zills - raising kids is best job in the world. I stayed home with my girls for 15 yrs and those were the happiest years of my life. 

    Wishing you both the best!

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  • Katarina
    Katarina Member Posts: 386
    edited February 2015

    Bump

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  • cfdr
    cfdr Member Posts: 549
    edited February 2015

    I just worked a full-time week for the first time since 2010. Even worked over 8 hours some days! I'm exhausted at night, but I've been doing it. I've been on wellbutrin since September...that seems to be the best help for me. I started to fade a bit in December, so now my PCP has me doubling up on my dose two days a week (Monday and Friday). I'm crossing my fingers that this may actually be the thing that works for me. Or maybe I just need a full 3 years to recover...

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited February 2015

    it could just be the winter blahs. My vit d is back to normal. I bought a light therapy box on amazon and that seems to help. Congrats on working again.

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  • Buddy123
    Buddy123 Member Posts: 2
    edited November 2015

    Hi

    Fatigue is very real. I'm 3 years since finishing treatment. I have tried many variations of work patterns to manage the fatigue. i had burn out melt down recently at work. my body seemed to shout enough is enough you need to listen to what your body is telling you. I'm 3 weeks out of work now. off pay since last week. 4 kids coming up to Christmas. I've been pushing my body way too hard not listening. I'm at a crossroads now. if i only have a year or 2 left i could have 30. how would i like to live it. certainly not doing a job that was so stressful too demanding and pure toxic for my health. i want now to have time to heal recover rear my children. have time to exercise eat well etc. how will u pay my mortgage. i will find another way. very very scarey. but at least I'm alive to make this tough tough decision and hopefully live life of my choosing. thinking of everyone out there trying to be a mother wife employee after what we've been through we deserve to live the life we want. x

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited November 2015

    hi buddy. Not sure whats available in Ireland if you no longer can work. You need a frank discussion with your MO. Mine backed me up. I wasn't going to be too tired for my kids. I am but I can't imagine working too.

    I feel better now that my ovaries are out and switched from tamox to arimidex.

    Hang in there.

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