nerve pain

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newbie
newbie Member Posts: 15
edited June 2014 in IDC (Invasive Ductal Carcinoma)

idc, trip neg., mastectomy with axillary dissection in dec. have had a lot of pain in upper arm from shoulder to elbow and tenderness across chest, which i have read a few articles and posts here that other women are having this and am a little discouraged to find that some are still having this after several years. have been on several meds for this and only very slight help from gabepentin, nothing else helping at all. am in chemo now and it is making it worse. thought only pain was going to be from surgery itself.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited January 2011

    Check out stage 1 & 2... thread on pain (PMPS)

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  • newbie
    newbie Member Posts: 15
    edited January 2011

    not very good on the computer im afraid, took several tries just to get on discussion board.  lol .  is that on this site?

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  • maxim
    maxim Member Posts: 4
    edited January 2011

    i have the exact same pain that you are describing. I had a left masectomy on Dec 20th and 6 nodes were removed. Going back for an axillary next week and i am very nervous because of the nerve pain from the first surgery. pain meds and zanex have helped a bit, you might want to try to get the right med mix. my dr's think it will subside, but i'm discouraged about this too- hard to think about anything else 24/7

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  • bevin
    bevin Member Posts: 1,902
    edited January 2011

    Hi, I believe nerve pain is sometimes well treated with neurontin or the like. you may want to talk with your Onco.  Good luck

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2011

    Is the nerve pain on the top of your arm or the underside?  I had a bilateral mastectomy, with axillary node disection. On the bc side  I have nerve pain on the underside of my arm from the armpit to the elbow.  I am sure my nerve pain is from the node disection.  I am taking neurotic, while it helps my feet it is of no help on the nerve pain in my arm.  The ony thing that helps to desensitize it is by wearing my lymphedema sleeve.

    BTW I had inflammatory bc & triple negative.

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  • newbie
    newbie Member Posts: 15
    edited January 2011

    my pain is from my shoulder to my elbow on the underside of my arm. i have been using a homeade compression sleeve which helps a little, at least so i don't feel things touching my arm as much since the skin feels like a bad sunburn and so i don't get as many chills which causes a whole different kind of pain in it. the neurontin helps a little but none of the other meds tried are working at all. so i take it that you are still in pain from this 3 years out? i am so sorry that you are having this, it seems enough to have to deal with the cancer, surgery, chemo/radiation without having this bad side effect of constant pain. lots of prayers for you!

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  • newbie
    newbie Member Posts: 15
    edited January 2011

    i don't blame you for being nervous, i am going to request a mastectomy on other side as soon as chemo is over so before i could get cancer on that side and assure no lymph node removal rather than to wait until it could develop because i don't think i could endure pain on both sides. it is hard to think of anything else like you said, i feel like im just being a wimp sometimes but have always thought i handled pain well, but never had a constant pain like this. i am saying many prayers for you esp for your upcoming surgery. please let me know how you are doing when you are able.

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  • Sassa
    Sassa Member Posts: 1,588
    edited January 2011

    Been there done that (bilateral mastectomies, right side: modified radical with SNB, left side: simple).

    All I can tell you all is that my nerve pain eventually disappeared.  The worse for me was the pain that referred around to the back between the shoulder blade and shoulder/armpit area.

    The surgery pain will take several months.  Then as the nerves start to heal and feeling is returning, you will experience sensations like pin pricks, multiple bee stings, aching, and intense itching.  Each episode lasts less than a day and, when over, you will noticed that you have regained feeling in some portion of the skin.

    I really hated the intense itching in that back area.

    The only thing I found that helped during some of the nerve regeneration itching or stinging, was one of my painkillers left over from my mastectomies.

    The sensation returning to my skin took about two years to complete.

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  • Isabella4
    Isabella4 Member Posts: 2,166
    edited January 2011

    Hi, Newbie.

    I had double mastectomy, full node dissection on RHS, and 3 nodes removed LHS, nearly eight years ago.

    I have been in constant pain on my RHS for all of this time....it has never gone...I was told no-one else was complaining of this symptom, which I found to be badly untrue when I joined this site....I was made to feel a moaner. I tried various pain drugs, self bought, and doctor prescribed...nothing touches it, it just gnaws away at me. I try and forget it, but it isn't easy at all.

    I know some of us DO get relief, as time passes, but looks now as if I won't be one of them !! Hope you are.

    Isabella.

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  • newbie
    newbie Member Posts: 15
    edited January 2011

    hey, isabella4! i am so sorry that your pain has lasted so long! i am glad to have gotten on this site because i was feeling the same way and even have heard "it's STILL hurting?" at 6 wks out. Yes, it's still hurting i say and then it seems like no one wants to ask how you are doing anymore because like you said, you feel like a moaner. i sure can't imagine what all this must be like after 8 years! i'm sure you have tried everything that is available after that long and i sure feel terrible for you! i'm in chemo now which some days makes it even worse and then my onco has the audacity to tell me it won't affect it even after his chemo teaching nurse told me after she asked if/ what kind of pain that i was having that the chemo WOULD affect it, just not sure how much. i am glad there are some people who do understand !  i will be saying prayers for you in hopes of still getting relief from this.

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  • newbie
    newbie Member Posts: 15
    edited January 2011

    hi, sassa! i am really glad your pain subsided, i hope mine does too, but i sure feel bad for the women on here that are still having it. i never imagined how much there was to this disease until experiencing it and reading some of the womens stories on this site.

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  • Michelle010611
    Michelle010611 Member Posts: 5
    edited February 2011

    I'm glad you posted this. I had a lumpectomy and sentinel lymph node dissection on February 2nd. My nurse practitioner was brave enough to tell me that the nerve pain usually doesn't go away. I have learned, though, during my short journey not to accept everything that I'm given. I plead the blood of Jesus over my life and my health. I don't want to deal with nerve pain for the rest of my life, actually not much longer than...right now. I trust God that He is able to heal me of this pain.

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