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Hypersensitive skin/nerves after mastectomy

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124

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  • rah2464
    rah2464 Member Posts: 1,192
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    Acryan, I too had this issue for several months. Literally the only thing I could tolerate for a while was the surgical garment they sent me home in. I began experimenting with different (cheap) stretchy tank tops that I purchased at wal-mart. Some days these worked for a few hours. I also purchased a compression bra online that really helped me. It was just enough compression not to irritate. The compression also worked to calm the nerve responses.

    My PS had me start to desensitize the area trying manual gentle massage, a damp soft washcloth stroked over the area progressing to a dry washcloth. Organic castor oil is great to use as part of your massage as well, anti inflammatory.

    I so feel for you right now, this was awful for me but it will get better. Is it possible for your PS to refer you to a lymphatic massage therapist once you are further out from your surgery? That may help as well.

  • WC3
    WC3 Member Posts: 658
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    acryan:

    The skin on my chest in the weeks after my bmx felt sunburned but I've heard others describe it as a sandpaper feeling. I think it's some of the nerves regenerating.
  • acryan
    acryan Member Posts: 4
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    Thank you for the positive words of encouragement. Since reading the posts in this thread I've been trying the gentle massaging and it does alleviate the sensation temporarily, which is better than nothing! I'm trying Aspercreme which has Linocaine in it and that too seems to be helping. Can't wait to have this gone!

  • acryan
    acryan Member Posts: 4
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    Thank you for the positive words of encouragement. Since reading the posts in this thread I've been trying the gentle massaging and it does alleviate the sensation temporarily, which is better than nothing! I'm trying Aspercreme which has Linocaine in it and that too seems to be helping. I am supposed to start some sort of PT soon, I'll ask about the lymphatic massage. Can't wait to have this gone!

  • acryan
    acryan Member Posts: 4
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    Yes, I believe it's the same thing. How long did it last for you? Did you do anything that made the sensation subside?

  • abigailj
    abigailj Member Posts: 101
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    I'm so glad I found this thread - I had skin/nipple sparing BMX with immediate DIEP recon about 10 weeks ago, 2 weeks After that had follow on to remove the flaps since thankfully my skin survived. But I had some wound healing issues On part of the bikini line incision (I'm 63 and a former smoker) and an infection in one reconstructed breast so had another surgery to revise abdominal scar and clean up infection (yeah, had a drain for a week after that one) August 10. And since that surgery which stretched me tighter in the abdomen I've had that bad sunburn/ awful sensitivity feeling acrossa good portion of my abdomen.

    PS prescribed 100 mg Gabapentin 3x/day - I took it for a week, didn't do much and I prefer to avoid prescription drugs. Told PS who said to “massage the area gently “ - that didn't help me much

    Well I read this whole thread and what has started working for me to reduce this pain is using the needle spray and then the pulse massage setting of my handheld shower head twice daily as one sister on this thread recommended and taking magnesium and turmeric as one or two others suggested. I'll be adding a few other supplements that some reputable studies say help with neuropathy and will post results if that improves things further.

    Thanks to everyone for sharing what's worked and what hasn't for them, I really appreciate it!

    Ab

  • lanne2389
    lanne2389 Member Posts: 220
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    Hi acryan

    I had what you describe - it's horrible! I initially relied on 1/2 an oxy until those ran out then I had to get an Rx for Gabapentin. That worked well but left me a little sleepy (I think I was taking 300mg/day). I eventually switched to Cymbalta as that helped with both nerve pain and anxiety.

    I had expanders Initially - ugh. The broken glass feeling was so SO uncomfortable I changed reconstruction plans from implants to DIEP. Even after DIEP it felt like (And sometimes still feels like) I'm wearing a chest harness but the broken glass feeling is gone - that took about 14 months to slowly subside (for me).

    Don't let your Dr ignore your complaints on this - it will calm down eventually but might be a month or might be many months and there are drugs that make it bearable. Don’t under report your pain. At 2 weeks post BMX, mine was definitely a 12 out of 10. You want to curtail the pain so you feel like and do get moving around - and not sitting on the couch perfectly still so your chest isn’t scritching.

    Once you can wear a non-medical bra, try anything that isn't tight made of soft cotton, or try the
    Bali Women's Comfort Revolution Easylite Seamless Wireless Bra (on Amazon) one size up. It is silky smooth and you can barely feel it on if it's not too tight. It's still my favorite bra

    Pls don't hesitate to ask more questions - I know how miserable you're feeling.

    Lanne

  • lw422
    lw422 Member Posts: 1,399
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    Bumping this older thread because it has a lot of good information. I'm almost 3 weeks post-op and having the nerve pain on the back of my upper arm, "bag of golf balls" feeling in my armpit, extreme sensitivity and "sticky" skin feeling under arm. All of this is quite miserable and I'm doing the range-of-motion exercises for my arm. I had a single mastectomy (right) and 32 lymph nodes removed, so I expect to be miserable for a few more weeks.

    If you have had any of these symptoms and treatment helped, please share what worked for you.

  • Ann47
    Ann47 Member Posts: 1
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    Hi, LW422,


    The only thing that improved my hyper sensitivity was the Gabapentin after about a month of use. Word of caution, it has some side effects that may not be easy to deal with so hopefully your doctor starts with low dose. I had a foggy brain and memory problems while on the initial high dose (where I couldn’t remember why I went to a store). I asked the doctor to decrease the dosage and did relatively ok with 100 mg per day.


    Also, if you do decide to go that route, don’t stop it cold turkey as it has lasting effects. Try to reduce the dosage each week until you get to 0. You’d be surprised how many doctors won’t tell you this.


    I am out 4 years now and while I don’t have the initial skin sensitivity I had (where I couldn’t wear clothes at all), I still have a strange sensation that when I touch my chest skin around the incision, I feel like I have ants crawling in my armpit. It takes a while to get used to it, but considering the big picture, it is small price to pay.


    I hope this helps a little and wish you a fast recovery andall the best.

  • lw422
    lw422 Member Posts: 1,399
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    Thanks so much, Ann. I'm three weeks out from surgery today, so I suppose I just need to be patient and give it some time to heal. It's frustrating to have to deal with so much discomfort from our treatments, though.

    I took Gabapentin in 2017 for shingles and don't remember any significant SEs from it, so I wouldn't hesitate to take it again if my doctor recommends that I do.

  • rah2464
    rah2464 Member Posts: 1,192
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    LW22 I am going to second trying the gabapentin. My first surgery (direct to implant, double) i had terrible hypersensitivity. I could only tolerate the surgical garment they sent me home in. I struggled with cording, spasms, iron bra, the whole bit for a long time. I was able thru massage, acupuncture and time to get it improved but finally gave in and had all the scar tissue removed and the implants replaced this past November. The other reason I went ahead with the redo was that I had also developed a neuroma that could only be accessed if they opened things up again. Needless to say I was very anxious about it wondering if I would have a repeat of the hypersensitivity. This time, I was given Gabapentin pre op and post operatively. Made a world of difference for me. I couldn't believe how easy the recovery was.

  • lw422
    lw422 Member Posts: 1,399
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    Thanks, Rah. Does Gabapentin actually help the "iron bra" thing or is it more for the skin sensitivity? Also, I will be starting radiation in a couple of weeks; can Gabapentin be taken during rads?

  • rah2464
    rah2464 Member Posts: 1,192
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    LW for me it helped with both but I think targets the hypersensitivity more. I never had radiation so I would ask your medical team about it just to cover all the bases. I sure hope you get some relief soon. Hugs

  • Bookpusher
    Bookpusher Member Posts: 22
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    LW,

    I am 6 weeks out from BMX. I do have some sensitivity remaining, while unpleasant I can deal with it. It is the chest and underarm tightness that I am still struggling with. (Have that sticky underarm thing, too) Sometimes it’s not too bad, other times very uncomfortable and nerve-wracking. I do stretches and massages- sometimes I get relief, sometimes not. I just pray it will eventually go away.

    Best of luck in getting relief. I keep researching to find something that will work for the tightness, but nothing has really solved the problem yet.

  • lw422
    lw422 Member Posts: 1,399
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    Hey Bookpusher. I was wondering how you're doing these days. I'm hoping that we are just early in our healing process and that these SEs will resolve themselves in time. It seems to me that the tightness I'm feeling gets worse as the day progresses, so maybe it's just swelling or something. Maybe fluid...??

    My biggest fear is that the tightness and sensitivity will get worse when I start radiation in a couple of weeks. :-s God, I HATE cancer so much.

  • Bookpusher
    Bookpusher Member Posts: 22
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    LW,

    My tightness comes and goes during the day, but night time is definitely the worse. I wonder if we can do too much stretching?? I stretch every time it tightens up. I wish we had better info from our docs on this recovery process. Basically, we’re just left trying to figure it out on our own. Thank God for this site

    I sure hope the radiation does not make the SE from surgery get worse. OMG, that would be awful. I hate cancer, too!! And this awful virus just complicates everything. Stay safe. It is raging here in my neck of the woods.

  • everymoment
    everymoment Member Posts: 6,656
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    I've read most of the inputs and can't find any mention of the diagnostic name for what is being discussed and self-treated. Is everyone just guessing at treatment? What diagnosis do doctors give for prescribing Gabapentin?

  • lw422
    lw422 Member Posts: 1,399
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    Magiclight--gabapentin is prescribed for nerve pain. In breast surgery, there are a lot of nerves cut or disturbed, especially in the axilla (lymph nodes removed/dissected). There's really no diagnosis here; just post-surgical pain and discomfort.

    If it goes on for months or years it's called "PMPS" or something like that... post mastectomy pain syndrome.

  • armom4
    armom4 Member Posts: 82
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    Soo... hate to be a Debbie downer but I'm 20 months out from mastectomy, 3 months out from reconstruction. Had tightness the whole time I was flat and still have it now after recon. I also still have sensitivity and sometimes twinges of sharp pain. I wear a super soft sports bra and it helps because it keeps my clothes from rubbing against my chest and underarm/side. I suppose some people are lucky and their discomfort goes away but I wouldn't count on it.

  • Bookpusher
    Bookpusher Member Posts: 22
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    ARmom4,

    Oh, my gosh! Have any of your docs given you any hope that the tightness will go away eventually? Have you had PT? This is so discouraging...I am 7 weeks out and was thinking it surely will let up before long. How horrible to have had it going on for 20 months!! Bless your heart

  • WC3
    WC3 Member Posts: 658
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    Acryan:

    I don't recall exactly how long the sunburned sensation lasted but I think a few weeks. I didn't find it intolerable though.

  • lw422
    lw422 Member Posts: 1,399
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    I'm at 3 1/2 weeks out from mastectomy and it seems that things are s-l-o-w-l-y improving. I especially notice that I feel better when I first wake up in the morning. As the day progresses, I have more tightening and sensitivity, so hopefully as tissue heals, settles, and all the fluid/swelling dissipates I will start feeling better.

    ARMom--how terrible for you; I hope you are able to get some relief somehow. I didn't have reconstruction and don't plan to, so I "assume" my recovery will be easier (at least I hope so!) Of course none of this crap is "easy" so who am I kidding.


  • lw422
    lw422 Member Posts: 1,399
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    Tomorrow will be 5 weeks since my mastectomy and I'm feeling a big improvement in the tightness and sensitivity. I have kept up with the range of motion exercises daily and used different "streams" from the hand-held massaging shower head to gently massage my underarm. Not sure if any of that actually helps or if it just takes time for tissues to settle and resolve.

    I hope others are feeling better, too.

  • lw422
    lw422 Member Posts: 1,399
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    Just one more update. It's been three months since my mastectomy and ALND, with 32 nodes removed. Two weeks ago I finished 30 radiation treatments, which seemed to tighten up things even more which was really depressing. I've kept up with daily stretches and a bit of self-massage, and I'm very happy to report that the "iron bra" thing is actually getting better. Much better.

    The nerve pain and feeling of a wad of something under my arm has drastically improved and I feel almost normal these days. I'm so grateful because I was really afraid I'd be living in misery. I just hope that this will give someone a little hope if you are struggling with tightness and nerve pain... it takes time but keep up with your stretches. It does get better.

  • minustwo
    minustwo Member Posts: 13,116
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    LW - so glad to hear that things have improved.

  • rah2464
    rah2464 Member Posts: 1,192
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    That is great news to hear LW. Lovely as well for you to post about your progress in case others are struggling.

  • lw422
    lw422 Member Posts: 1,399
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    Thanks -2 and Rah. I know that for me, each step in my treatment had me running to the forum to search for others going through the same thing. I needed to hear that things get better, that chemo SEs would eventually go away, that people with my Dx can be long-term survivors, etc. It helped me so much to have a bit of hope from somewhere, so I hope that things I have posted might help some other person with their struggle, too. Happy holidays!

  • LMF2021
    LMF2021 Member Posts: 2
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    I had a double mastectomy 4 weeks ago and suffer from mild chest itching and burning. The worst of it was day 7 -12 when even warm water from the shower felt like it was super hot when it hit the top section of my chest. When it first happened I expected to see blisters and a rash on my chest but when I looked at it, the skin looked normal. Thank goodness for this helpful thread because I knew what I was dealing with.

    Now it's just itching if any material hits the skin. While my version doesn't sound as bad as others, I just wanted to share I found Japanese cotton (long strand, super soft) rectangular pads really helped. I have 3-4 of them in my sports bra at all times. If I get an itch, I slide the cotton pad over it held by the sports bra edge and the itching subsides immediately. You can also roll them to be thicker to keep the top of your shirt from hitting an area.

    I had the Shiseido brand on hand and they are about 3 X 2 inches, but I am sure any brand would work.

    The cotton pad shuffle is annoying but less so than the itching. I like the rest of you hope this goes away soon.

  • lw422
    lw422 Member Posts: 1,399
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    LMF2021--thanks for the suggestion; I'm sure that will help many people. I am now 3.5 months out from my mastectomy and I'm feeling better every day. Finally most of the swelling has gone down and the tightness isn't as pronounced as it was. I'm still stretching and exercising daily to help loosen things up.

    I think the biggest "cure" for most of the surgical weirdness is simply time. It just takes time for our poor bodies to recover.

  • everymoment
    everymoment Member Posts: 6,656
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    Armom4: Your truth does not make you a debbie-downer. I'm six years post mastectomy and although I wish the post mastectomy pain would go away, it has not. However, it has changed, though still a near constant painful reminder. If those who suffer from long term post-surgical pain do not speak about it, then nothing will be done by surgeons to find prevention strategies. Denial and hiding the fact is not helpful while finding and reporting incidence and treatments are beneficial. A 20-50 percent occurrence post mastectomy is significant.

    AZ2017 I hope you are one of the fortunate 50-80% for whom the pain is a temporary phenomenon.

    Persistent Post-Mastectomy Pain: Risk Factors and Current Approaches to Treatment (nih.gov)