Still have the fatigue after 2 years.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    I think one of the hardest things is that many doctors dont recognize or understand how we are feeling when it comes to fatigue.  First they look at our thyroid function. 

    ...Hypothyroidism - is an under active thyroid. The treatment is simple.  They give you thyroid medication to get your numbers back up to normal.

    ...Hyperthyroidism - is an over active thyroid.  Not as simple to treat and frequently needs surgical intervention.

    OK - Thyroid is normal?  Then we move on to anemia!  But your not anemic?  Then they move on to depression. 

    My thyroid function is normal, Im not anemic, and Im not depressed.  Yet I frequently get fatigued.  Seems to me this is a big side effect to our treatment that most of the medical community doesnt understand - if its not in the book of side effects, it doesnt exist.

    Nicki

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  • pinoideae
    pinoideae Member Posts: 1,271
    edited August 2008

    I was so darn fatigued for years (after bc treatments), gained weight.   My cholesterol had skyrocketed as well.  Exercised for 2 years, it helped some for cholesterol and weight, but definitely not the fatigue.  The day I first took synthroid, I immediately felt energy.  I felt lighter, like something was pushing down on my shoulders before but was lifted (although I had no idea of something pushing down on my shoulders prior to synthroid).  Cholesterol is now normal.  My weight is normal, well maybe I could lose 10 lbs, but I dont have to go to the gym anymore to struggle to maintain my weight.  Cool  There is more than one test for thyroid, here is a link:

    http://www.stillpointhealth.com/LowThyroidDilemma.html

    You should get to the bottom of your fatigue.  If it isn't thyroid, then it could be something else. Good luck to you!

    Whoopsiedoodles, so sorry to hear you are dealing with ms now. 

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008
    Summer thanks for the link.
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    I went to my local support group tonight and we all have so many of the same SE's, I felt normal for the first time in months.

    Misery loves company.

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  • paulinew
    paulinew Member Posts: 1
    edited August 2008

    Mary Lou,  I am in the middle of my chemo treatments, what I did before I started was make an appointment with a ND who put me on alot of vitamins and minerals.  She was very helpful in suggesting what kind of diet to be on too.  After my chemo is over we plan on a total detox  so that my liver and kidneys ect. will be flushed of all chemicals.  Since starting this treatment which my oncologist is very aware of , I have been able to continue to work.  I have a housecleaning business.  I feel my worst right after chemo treatment but I have been told that my side affects are not too bad.  I am living in CA but am sure there must be a ND in your area.  They are starting to work along side oncologists because of the positive affects it has on patients.  These natural medicine doctors are wonderful. Pauline

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  • pinoideae
    pinoideae Member Posts: 1,271
    edited August 2008

    http://www.cancer.org/docroot/MIT/content/MIT_2_4x_NCCN_Fatigue_Treatment_Guidelines_for_Patients_with_Cancer.asp

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Wow, I had no idea!!!

    Im 21 months out and still sometimes feel like I have walked into a brick wall.....it is getting better and the fits of fatigue that hit me out of the blue are getting farther between so I think there is hope....I just had no idea that I wasnt alone with this.

    Thanks you ladies for making me feel that Im not imagining things or being a whiner!!!!!

    Jule

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008
    Looks like you are not alone Jule....I just though because it had been so long, that something was wrong.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Mary-Lou

    I too thought that since it has been so long after treatment that there was something wrong...it always seems that if there is anything abnormal or strange I am always in the front of the line for it so had planned to talk with my oncologist in Nov about it.

    Like I said though, I have noticed that it is getting better so maybe it just takes longer than I expected to recoup from this journey.

    Lets keep in touch and compare notes to see ok?

    Jule

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008
    I would like that.
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  • Worried77
    Worried77 Member Posts: 10
    edited August 2008

    Hey Mary-Lou,

     I'm sorry to hear you are feeling fatigued.  I wish I had some advice for you but I've never been through treatment like you ladies have so I don't know what to say. What I do want to say is I think you are amazing, going through what you have, and still here willing to help and give advice to everyone.Makes you a very special person.....

    I hope you feel better soon! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Mary-Lou

    Just wanted to touch base to see how your feeling and to say that I hope this week brings you a little more rest.

    Jule

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  • TammyLou
    TammyLou Member Posts: 740
    edited August 2008

    Yup.

    Cancer fatigue.

    Me too.

    Tammy Lou

    (Diagnosed January 2005)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Tammy Lou-Welcome (unfortunately) to the tired ladies group here Yell....I think most of us here are still within the first 2-3 yrs out bracket, but Summer is about 7 yrs......she makes some really good points about other things that BC has left behind for us....so if you are experiencing symptoms that you dont feel are quite right ask your docs to do some of the testing she has mentioned just to be sure.

    Jule

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  • Sher
    Sher Member Posts: 540
    edited August 2008

    I didn't have chemo, only radiation and have had a problem with fatigue since.  Course around that time I also started Tamoxifen since I was ER+, so maybe it is also an estrogen related issue.   Anyway when the fatigue kicked it during radiation, it never left!  And like someone else said, if one day I feel great and do lots physically, the next day I'm exhausted.  

    Google "fatigue after breast cancer treatment" or something similar and you will get many links that discuss this issue.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Sher, Ive done the google thing and all Ive discovered is that they say we should eat better and get more excercise.....one can only do so much of that stuff!!!!!

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    jpann39, I seem to have had more energy these last few days, it just doesn't let me know when it will be gone. The bottom just drops out. Thats when I just seem to crash.

    I had both grand children yesterday. They are 3 1/2 months and 20 months old, brother and sister. Wow made me think back to the days when mine were little, not sure how I did it.

    Granny Power

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  • LAT56
    LAT56 Member Posts: 79
    edited August 2008

    Yup, this fatigue is so hard to explain to people.   No amount of rest/sleep, etc...makes it better.   And you never know when its going to hit!!   The doctors said exercise might help, which I have been trying to do, but the joint/muscle/bone pain is terrible.   I really don't think the doctors understand.  There are some days when I can not even lift my head off of the pillow.  

    I've had to cut back my hours at work - which meant losing my full-time status and my benefits.    I feel like I'm missing out on so much!!  

    LAT56

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Amen Lat, Amen......

    Good to see you posting again!

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  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited August 2008

    Hey girls,

    I'm not 'post chemo' yet, but I can tell you that I can't wait! (Sept 26th). I have been really studying this fatigue thing all year (since my near-death adventure in Feb.) and have come up with two things (thyroid, anemia etc excluded). Firstly, pain wears me out. I can be feeling great, but if I get 2 or 3 days relentless pain (even if I seem to be sleeping), I crash. I can hardly move. The other, much more interesting, thing is about oxygen and its uptake. When I am breathless with low red blood cell count (nadir) the fatigue is ridiculous. This was the case when I was recovering from ARDS, before bc diagnosis. It was always the case when I used to smoke. I too (even in my 20s!) used to have a nap in the car. I was actually famous for my nana-naps of 2 hours!

    The ONLY thing that works for me is to get oxygen into the bloodstream. I really think super-fitness is the answer..(N-o-o-o-o-o!  I'm 50!!!) That's so hard when we have NO energy, but I think we have all discovered that the docs just don't get it. Even when, in desperation, I have sat and said, "You don't seem to understand. I am too tired to breathe.", I just get, "Oh..." And that's all!

    My plan for post Sept 26th is to get a professional recovery + stamina exercise regime drawn up and adopt it for the rest of my life. What option do we really have? Death has tapped us on the shoulder, and I'm going to run as fast as I can! (literally)Laughing 

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2008

    Kerry you look so young  Smile.....I had a plan, but somewhere along the line my body said no....Surprised

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Hi ladies,

    I had one of those hit me with a wall of fatigue episodes this weekend....its been a bit since I have had that feeling but we were walking along the beach (my ultimate favorite place to be!!!) and bang!!!!! I felt like I couldnt take another step...I pushed through it but before we got back I had to take several breaks....I sat down right on the beach in the sand and felt like I could have curled up in a ball and slept for days...I slept like a log that night but felt like I had been ran over by a truck the next morning...

    The one thing that I do hold on to is that the episodes like that are getting farther between but I sure wish there was some kind of warning....

    Hope everyone had a great 3-day weekend!!!!!

    Jule

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  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited September 2008

    Mary-Lou! Where did you get that holiday pic of me??? LOL

    I do look young..main reason is I was never ever a sun-worshipper, not because I was UV conscious, but because I always had really big boobs that attracted a lot of unwelcome attention Now, THERE'S an irony! 

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  • gracejon
    gracejon Member Posts: 972
    edited September 2008

    My oncologist mentioned to me during treatment that the medicine Ritalin was used for the indication of fatigue.

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  • Patti228
    Patti228 Member Posts: 3
    edited September 2008

    Yessss!  Finally someone gets it!  I also am 2 years out and the fatigue has been unrelenting!  Will the breast cancer medical community finally listen to us?   Yes, I'll accept we've been through the mill with chemo, radiation, surgeries. Yeah, could be post traumatic stress. But these are cop outs.  This fatigue is deeper.  Doesn't go away and doesn't get better. 

    Lack of estrogen?  Sure.  I'll accept that.  To a point.  Chemo slams us into menopause, and then tamoxifen does the rest. Unlike those who don't have BC, and lose their estrogen gradually, ours gets sucked away in a heartbeat. 

     I'll be mightily peeved if 10 years from now, all the studies show that sudden total depletion of estrogen is hugely damaging, and that tiny bits are protective. 

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2008

    Jule~ That is what I was talking about. The run over by a truck feeling in a flash out of nowhere.

    Grace~ can you tell us more?

    Patti~ "This fatigue is deeper" Wonderful feed back. Hope I'm here in ten years to hear anything they find out. We should be a study. 

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  • scorpio
    scorpio Member Posts: 58
    edited September 2008

    Patti 228,

    My thoughts exactly! Does anybody remember when birth control pills first came out..(the original hormone therapy).how heavy the dosages were? A Lot of women couldn't take the pill because of the side effects. Then they (the medical community)figured out that a much lower dosage worked just as well..a "mini " pill. Maybe that's the best of both worlds...mini dosage that would produce the protection without the severe side effects. Are we  bc patients really the only people who thought of this?

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  • Patti228
    Patti228 Member Posts: 3
    edited September 2008

    Scorpio--you say "are we bc patients really the only people who thought of this?" 

    I'm beginning to think we are.  Seriously.  For example, I've tried doing a medical literature search on lower dosing of tamoxifen...and unless I'm not looking in the right places, there isn't much current stuff out there.  It's like the medical attitude toward tamoxifen is -- why would you ever want a lower dose -- it's saving your life, yada, yada, yada.  (Then why would you give the same dose to a 100 pound patient as a 400 pound patient?--maybe there's a bc survivor reading this who is a pharmacist and can comment...)  Well, I'll tell you, saying "why would you ever want a lower dose?" --that's not good enough anymore.  Quality of that life is just as important. 

    The medical attitudes toward reconstruction have aligned with the times.  Meaning, it's not just enough to look good in clothing, but it's just as important to look good naked.

     I think the medical attitudes toward long term estrogen suppression/depletion need to look at how much depletion is enough without making it all go away. 

    I think the medical attitudes toward post bc fatigue need to look beyond the sudden menopause, the surgeries, the radiation treatments, and acknowledge that THE FATIGUE IS REAL, AND UNIQUE TO BC.

    <now I'll get off my soapbox>

    Patti

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Pati - AMEN to all you said. I have to believe it's due to the majority of the medical profession being male. I know it's changing, but too slowly. If it was a medical issue like ED, they'd be all over it (as they have been) and things would change more quickly.

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  • gracejon
    gracejon Member Posts: 972
    edited September 2008

    http://www.psa-rising.com/med/chemo/fatigue.htm

    Some patients report benefit from stimulant drugs such as Ritalin (methylphenidate) or Provigil (modafinil). Provigil was not designed for cancer patients, it is used mainly to treat people with narcolepsy. It has some troublesome side effects. In a clinical trial, 74 of the 934 patients (8%) who received PROVIGIL dropped out compared to 3% of patients that received placebo. The most frequent reasons for stopping Provigil were headache, nausea, anxiety, dizziness, insomnia, chest pain and nervousness.

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