Long Term Exhaustion

Hi Marilyn...I finished my radiaiton in Feb 2009.  My skin held up amazingly well but 1/2 way through my treatment I suffered from terrible fatigue.  I started Tamoxifen on March 1st.  In April I started feeling much better.  In May I started getting tired again...it's really bad now.  I sleep a very sound 8 hours a night and wake up feeling like I never slept at all. I am not depressed, I am eating healthier, I walk 1 mile a day....all the caffeine, energy drinks, vitamins are not helping me. I even tried a prescription stimulant that actually seemed to make me worse!  My thyroid and other blood work has all been normal.

I thought it was from the Tamoxifen but wondering now if it's from the radiation.  I am also getting very forgetful.

I have researched and decided to try accupuncture.  I have an appointment in 2 weeks and hoping this will be my answer.  I am getting desperate...it's very frustrating to want to do so many things and being so tired all the time. 

Are you on Tamoxifen or anything now?  I'll let you know if accupuncture helps...let me know if you find another cure! 

Wendy

I've been done with radiation for 1-1/2 years and I'm still tired.  But during the treatment, I was working full time and not tired at all.  It seemed to hit me much later, and I too am taking Tamoxifen, wondering if that makes you more tired.  My onc. says not necessarily, but everyone is different.  I've also got alot of joint and muscle pain, but not sure if its related to the radiation or the Tamoxifen or both!

My breast is also much better, but every so often I get those little lightening strikes of pain.....anyone experience those?  They're really nerves that are mending, so I'm told, but its an odd feeling.

Hello everyone, it's good to read the posts here as I too finished my radiation in Nov 2009. After a mastectomy to remove a 6cm tumour and a further 9cm mass of ductal carcinoma in situ, I had 6mths chemo and then a huge amount of radiation to the entire chest wall, neck, underarm & across my back to "steralise the area" cutting across the top of my left lung & heart. My skin held up very well with just a slight redness which healed 3 weeks after I finished radiation - thank you Sorbelene cream. I felt so good during and after radiation until about March 2010 when I was just on Tamoxifin - a few aches which went away after a couple of months and Hercepton - lots of side effects but nothing I couldn't handle after surviving horrid chemo.

I tried going back to work with my husband (mowing & gardening for 5 hours a day) I got through two days and fatigue started and I then spent the rest of the week laying around exhausted. So now I just do a day here and there and rest all other times (in between housework and hospital appointments). I'm sure the fatigue which sleep doesn't help, is a side effect of radiation - our bodies were blasted with x-rays and is working hard to regrow cells destroyed and the fatigue just makes you slow down while your healing.

The sad thing is no-one really understands how you actually feel until they have experienced it themselves, my family expect that I should be much better now that my chemo is finished and my hair is growing back.  I'm now just on Tamoxifin but there are some days when I still feel very poorly. My eyesight, hearing, concentration, short-term memory, emotions, skin & sex drive have suffered to the point of me feeling like a different person. Oh and don't forget the weight gain. I'm told it is a side effect of early menopause brought on by my chemo treatment to stop my hormones.

I too have walked everyday during my treatment which has helped me to stay active and in touch with the community (and lots of deep conversation with my children who walk with me) though some days I felt like I was going through the motions of one foot after another and walking sideways off the pathway. I'm fortunate that I can say when and what I can do regards to working (physical labour really) because my husband is keeping our business going without me. 

I keep smiling and am enjoying the extended life my treatment has given to me.

The only thing I found that really helped with the long-term fatigue was - time. I finished rads in mid-Aug and am not still back to myself but slowly getting there. I did have chemo though so it's a longer haul if you've had chemo.

You don't need more SLEEP, you need more time to HEAL.

Leah

I'm so glad of this thread, I so hate this thread.

I'm glad not to be the only one who is still zonked, I hate being part of the zonked club.

I finished my zaps on May 7 and felt pretty darned good. I went off that weekend and cooked for a retreat and all was grand at least energy wise.  I spent a week or so with a sore boobie from zaps but told myself as I left early each day that as soon as things healed up, life would go back to normal.  Then I got hit with a cold that knocked me to bed for 19 out of 24 hours, up jumped a wee bit of radiation pneumonitis and there went normal.  I didn't know about the radiation pneumonitis was for a couple of weeks but wondered why the heck I was so ragged.  The pneumonitis started getting a bit better but my energy level is still to hell in the proverbial handbasket AND I HATE IT!!!!!!

I work full time and have three wonderful monsters who need my time and attention when I get home.  I can't go to bed at 8 or 9.  I have a job that has been ohsopatient.  I am on a project with other people and I am not pulling my weight.  To look at me, all is well and grand--my skin has no scarring, the burns are gone and yet, here I am napping at my desk.  I get more sleep, I'm still zonked.  I drink more coffee, I'm still zonked.

And what I have [or do I say "had" now?] was the "good cancer"---how the heck do the sisters with the bad cancer manage?  And I haven't even started tamoxifen --and won't until the radiation pneumonitis clears up--if I'm zonked now and tamoxifen is an energy vampire, what the heck will I be like when I start that?   I feel like such a whiner and complainer.  Surely if I just push myself a bit harder, I can get back to normal.

Clearly, my typeAness and teenytiny desire to control the universe, well my universe, is showing. . . . . .

The rads really wiped me out.  I finished my rads in  oct 2008 and it took almost a year for me to get some energy back.  The rads cause severe anemia that is slowly getting better.  I still tire more quickly than before but I feel more like myself, finally.  So hang in there it does get better.

Thanks Darla...good luck to you next month with your radiation!  I really don't think most people get the fatigue as bad as some of us. Norma...glad you are feeling better!

Good news so far...my low dose of Effexor has really helped me out.  The last thing I wanted to do was take more medications but I was getting desperate.  It took all my energy just to go to work and if one little thing happened out of the ordinary I was either going to injure someone or burst into tears!

 You ladies are really great!

Wendy