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Tamoxifen causing muscle and rib pain?

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nikki74
nikki74 Member Posts: 4

I'm 33, was diagnosed in 2006 with stage 1 IDC, Oncotype score was 9, no lymph node involvement, ER/PR+, Her2-.  I had a lumpectomy followed by radiation.  I've been on tamoxifen for about 2 years and approx. 8 months ago my ab muscle just below my ribs (breast cancer side) started aching to where I couldn't do ab workouts anymore without it bothering me.  Shortly after that started I started having aching around my ribs on the front, side, and back.  It moves around and doesn't bother me everyday.  I had an abdominal ultrasound and xrays on the ribs and spine about 5 months ago all of which showed nothing.  Anyone else have these types of side effects from tamoxifen?  It feels like soft tissue pain, but I don't know because I have no idea what bone pain feels like.  My primary care doctor told me that tamoxifen is most likely the cause of this.  He gave me naproxen which is just a strong form of aleve, but it didn't help...just made my stomach hurt.  Anyone else have a similar problem?

Thanks,

Nikki

Comments

  • rumoret
    rumoret Member Posts: 45
    edited May 2008
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    I have been on tomoxifen since Jan 2007. I have experienced the roaming lower rib aches. I get many body aches.....but I have to say that I think this is a combination of reduced hormones and tomoxifen.

    When I went over to Hawaii this month and for two weeks I did not have one single ache! My sister was there a year ago with her family and she has severe  disc issues and her daughter had major injuries caused from a car accident 4 years ago, and both of them did not ache while they were there. So....I think the a vacation to a different environment allowed us to get far away from our aches and pains.

    Now that I have arrived back home......it was not to long before my hips started to ache again. The ribs are doing fine......for now.......knock on wood. Oh....another thing....when I was on vacation....I never thought or acted like a BREAST CANCER PATIENT.....and that was the best present to myself since this journey began! I actually felt like my normal self!

    Love,

    Terry 

  • lesleeluck
    lesleeluck Member Posts: 4
    edited May 2008
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    Hi nikki,

    New to this site, also experience the same rib and abd muscle pain on the same side ...been on Tamoxifen for 2 years now...rest, anti-inflams and warm baths seems to help...sure its from rads, agrevated by tamoxifen...Undecided also battle to sleep on that side at night...u too???  

  • nikki74
    nikki74 Member Posts: 4
    edited May 2008
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    I don't have a problem when I'm laying down, so it doesn't bother me at night when sleeping.  It comes and goes too.  Have you had any tests done to rule out other causes?  What does your oncologist say about it?  I was told that tamoxifen doesn't cause those types of problems.

  • lesleeluck
    lesleeluck Member Posts: 4
    edited May 2008
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     Onc says its probably from the radiation, also had a frozen shoulder...no other tests besides liver functions and Chest XRay..so who knowsSmile
  • nikki74
    nikki74 Member Posts: 4
    edited May 2008
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    Did your dr. say whether they thought it was permanent? 

  • laurie2005
    laurie2005 Member Posts: 3
    edited May 2008
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    I was diagnosed with ibc in 2005, no node involvement.  Had radiation and have been on Tamoxifen for over 2 years now.  About a year ago I started having the same pains you describe.  My surgeon said it was from the radiation.  It has slowly gotten worse, but still just comes and goes.  I asked my onc about it this time and told him that my dr said it was from the ribs and radiation.  He said that the pain radiating around and to the back didn't sound like it was coming from the ribs, so he ordered a ct scan.  The scan showed that I had a 'fatty liver'.  When I researched this, one of the listed drugs that cause this is Tamoxifen.  It surprised me, because I never heard that before.  You might want to get your liver enzymes tested or a ct scan, because if you have the 'fatty liver' you need to get off the Tamoxifen.

  • nikki74
    nikki74 Member Posts: 4
    edited May 2008
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    I had an ultrasound that looked at my liver, kidneys, pancreas, gallbladder, and aorta a few months ago and nothing abnormal was seen.  I also had a blood count and liver function bloodwork done around that same time that was normal also.  I've had xrays of my ribs and spine that showed nothing as well.  I guess I'll just have to go to the oncologist and see what's next.  I hate this....I'm tired of always being scared.  I'm only 33...I just want to be "normal" again!  Sorry for whining, I'm having a really bad day emotionally (in case you couldn't tell..lol).

  • laurie2005
    laurie2005 Member Posts: 3
    edited May 2008
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    I know what you mean about wanting to be normal again.  We all feel that way.  The thing is, I guess we are normal, just our own kind of normal!  I don't know how I'd be if I was having to go through all of this in my 30's, I'll be 50 in October.  I've been off the Tamoxifen now since the beginning of May.  I'm amazed at the difference I'm already feeling.  My joints and body doesn't ache and hurt every time I get up out of a chair!  I thought old age had set in, but hey, maybe I'm not as old as I was feeling!  Don't know what all the onc will say when I go see him next week, but for sure, I'm not going back on the Tamoxifen.  It's like the stuff they give you to keep from getting one thing, gives you something else, just as bad!

    So whine away, that's what we're here for!

  • lesleeluck
    lesleeluck Member Posts: 4
    edited June 2008
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    Hi there again Nicki...know the feeling of just wanting to be back to old self again and the impatience to get on with life..and in your 30's there's so much more pressure to achieve...Fortunately I'm 47 and children have just left home, so the pace of life is less demanding...I feel for you...What inspires me is the braveness of the girls on this site, other times it makes me feel so guilty and bad and miserable that I cant cope as well, but I guess we all have our days and it is an emotional hormonal rollarcoaster ....be kind to yourself...hug 4 u...

  • lesleeluck
    lesleeluck Member Posts: 4
    edited June 2008
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    Hi Laurie,

    Thanx for the fatty liver info..You a brave lady to make the Tamoxifen decision, only the best of luck I hope it goes well with you..

  • Barbeqrn
    Barbeqrn Member Posts: 38
    edited June 2008
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    I am so relieved to see I am not the only one with this funky rib pain which comes and goes and it is pretty sore! I am always thinking the cancer has gone into my rib, my foot, whatever seems to be sore that day. I feel like I have arthritis and Prior to Rads and Tamox I felt fine!!!! I too want to be "normal " again and not worry about every little thing....Barb

  • debraRI
    debraRI Member Posts: 1
    edited May 2009
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    Hi all,

    I am on Tamox 1 year.  I am having the worst back pain and muscle spasms I have trouble getting out of bed.  I am like a cripple and getting out of a chair.  I have been to PT and I am only getting worse.  She is not sure why my muscles will not losen up the are like an alien gripping the bones around my left hip.  I had an x ray and they saw some arthitis but I am beggining to think it is the tamox.  I was very active before riding and doing spin a few times a week.  I am down to being lucky if i can do the block with out paying for it.  I see the onc next week and I feel she is going to say no way it is the tamox.  I would like to get off it for a little bit but will wait to talk to her.  I am getting very depressed because I am 45 and feeling like 80.

  • mcliegey
    mcliegey Member Posts: 1
    edited June 2010
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    I just gave up taking tamoxifen a month ago because of those same pains.  I was told the rib pain was likely caused by radiation.  I still have the rib pain now but it is nothing compared with the pain in my arms and legs.  My muscle pain in both arms and one leg lessened right away and have almost disappeared.  I could not lift my arms and my right leg could not go up even one stair.  Now I am almost back to normal - no real pain only discomfort.  My right arm still cannot reach my back but it is improving.  I had tried arimidex before the tamoxifen but the side effects were bad... tendinitis in my arms and dizziness.  Now my onc wants me to take aromacin but I expect it to be the same as tamoxifen.  I will begin taking it after my vacation in July.  If that does not work I will try arimidex again.  All this is NO fun.

  • 2QUI
    2QUI Member Posts: 3
    edited August 2010
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    I'm going through similar aches and pains.  The hotflashes are pretty much unbearable too - 1 per hour - the soaking wet kind.  Dr. put me on Effexor to help with hot flashes, it has helped decrease the intensity and length of flashes but not the number.  The aches and pains are very difficult.  Cannot get comfortable at night and am having trouble doing daily activities, even stairs are a huge obstacle to me. I too feel like I am 44 going on 90!  Any suggestions?  I was thinking about going off Tamoxifen for a week or so just to see if the pains can be ruled out.  Has anyone else tried this?

  • sherrilynne
    sherrilynne Member Posts: 5
    edited August 2010
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    It is so good to hear all of you say the things you are saying.  Just this week my oncologist said that the pain I'm having is not from Tamoxifen.  I feel like an old person getting up out of a chair.  I hurt in different places at diff. times including my muscles, but right now my left shoulder and my left knee are in constant pain.   The Dr. ordered a CT scan, which I hope comes out okay.   I'm having it done tomorrow on my birthday.   The pain scares you.   Thanks for sharing everyone.

  • bcincolorado
    bcincolorado Member Posts: 4,696
    edited August 2010
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    I have the same dx and have some rib pain as well on my mx side.  I started Tamox the end of January.  I just had to start physical therapy and my therapist said all of this pain is my body in a permanent muscle spasm from the surgeries and procedures from reconstruction. 

    You might want to see if you can go to a physical therapist to see if it will help you.  I've been twice and I can't say it is "fun" (it's quite painful actually) but the massage she does helps loosen it up and if you are faithful with the exercizes it will help.  I still have a long way to go before I'm done and get my range of motion back but it is definitely worth it.

  • KitRN01
    KitRN01 Member Posts: 1
    edited August 2010
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    I'm having all sorts of problems with pain and have been on Tamoxifen about 4 months. Fingers hurt, hips hurt, spine hurts. Aleve doesn't seem to touch it. I'm going to see my Oncologist tomorrow to discuss my options and if she thinks Tamoxifen is causing all the pain. She will probably want to do some xrays since this is my 2nd 3-month check up since diagnosis. I'll post again once I know more.

  • DiDel
    DiDel Member Posts: 733
    edited August 2010
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    Hi all! I've been having the same aches and pains. I too am 43 and feel 100!!

    I'd love to blame Tamoxifen except I haven't started it yet. My onc thought it was from the abrupt cut off of estrogen. Since completing chemo my hormones are in flux and I haven't had my period since April. My Onc suggested yoga and morning stretching. I also take fish oil and added glucosamine to my pill ritual. When I have time to do yoga and stretch in the morning and work out in the evening I definitely feel better. I highly recommend adding to your regimine if not currently.

    Hope this helps!

    Diane

  • kristinaT
    kristinaT Member Posts: 1
    edited August 2012
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    Hi. I am so glad that this site exsist otherwise I would think I was the only one feeling this! I have been on tamoxifen for almost four years and recently noticed more flare ups of hip, rib, knee and now spine pain that sometime radiates around the front. It's fine once I get moving but in the morning and getting up from a sitting position are extremely painful! I feel like 90 years old and I am 45! I have also noticed muscel weakness and some brusing on my legs. I try to work out and sometimes think that is the reason for the soreness but I am having my doubts and I am thinking it's the tamoxifen. going to see oncologist to have checked out. Thanks for listening:) and letting me know i am not alone.

  • LENAGREECE
    LENAGREECE Member Posts: 23
    edited August 2012
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    Hi eneryone. I take Tamoxifen 8 months now. It gets worse everyday. I cannot easily move so I gained weight which causes more trouble. I am 48 years old but I feel much older. My onco says it is Tamoxifen SE. How will I be after 4 more years of use?

  • nikki1974
    nikki1974 Member Posts: 10
    edited August 2012
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    I'm sorry you're dealing with this.  I stopped a year before it was recommended because I couldn't take it anymore...things just got worse as time went on.  I chose to get my quality of life back.  I was depressed due to the hormone changes from tamoxifen, overweight, in pain, no sex drive, bone loss (in my 30's), ovarian cysts, tired all the time....basically I was miserable and making those around me miserable, all from that medicine.  Tamoxifen affects younger premenopausal women a little different, so I had some side effects that alot of other women don't deal with.  The doctors make it sound like you better take this stuff or else....that's not true and they know it.  It's not a guarantee that your cancer won't come back if you take it.  I'm not saying to stop taking it by any means...but I am saying that if you get to the point where you are miserable you need to seriously consider your options.  I had a small stage 1 tumor, so the decision to stop Tamoxifen at 4 years instead of 5 was a little easier for me I think. Take Fish Oil 3 times a day and see if it helps with any of the pain you are having...it did help my rib pain. As for the weight gain...that didn't stop until I stopped taking the medicine.  I was very fit when I started taking it and gained over 30lbs. despite the fact that I eat healthy and workout 4-5 times a week. NOTHING I did stopped the weight issue and the doctors blew it off and acted as if it was something I was doing to cause it. I didn't start losing the weight until I was off tamoxifen for about 3 or 4 months, and it took quite a while for it all to come off. It just takes patience and dedication.  Don't stop eating healthy and excersizing or the weight gain and pain issues will only be worse.  If I hadn't stuck to my normal routine, I would have probably gained twice as much weight. 

    My best advice is to get off these message boards and try not to consume yourself with it.  I haven't been on here, but got an email notification and decided to reply because I remember being where you are now and I know it's hard.  I was happiest when I stopped reading about it and looking for some magic answer from other people as to how to stop the side effects.  You have to just take it one day at a time.  I wish all of you the best of luck!  I've been off tamoxifen for 2 years now and have been breast cancer free for 6 years!

  • bluepearl
    bluepearl Member Posts: 133
    edited August 2012
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    There are big nerves in chest area and any harm done to them can cause discomfort/pain and REFERRED pain.....it may not even be near your ribs but closer to the actually breast surgery.

  • DDay001
    DDay001 Member Posts: 1
    edited June 2019
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    Yes I was told that tamoxifen does not cause the pain that I experience I have never had the problem until I started taking tamoxifen I have been on it for five years I have pain in my lower right side of my back

    I wouldnt even describe it as a pain it’s a dull ache and I can feel it if I am pushing up against a pillow or against the car seat I have had an ultrasound on my ovaries I’ve had endometrial biopsy nothing

    I’ve even had the marker blood test nothing

    I am a breast cancer survivor with her2 positive as well as ER & PR positive nothing in my lymph nodes so it’s just annoying thing that the doctors will not admit that it Is tamoxifen