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Hypersensitive skin/nerves after mastectomy

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135

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  • aussie-cat
    aussie-cat Member Posts: 5,499
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    I'm 3 weeks post double mastectomy and about a week ago when I took the last dressing off my chest I started getting a lot of nerve pain, especially a stinging sensation across my front. Wearing a bra and breast forms also made it worse, so I'm not doing that now. I've been taking Pregabalin (Lyrica) for nerve pain since my surgery but yesterday my doctor said to increase the dose from 50mg twice a day to 75mg twice a day. I'm getting worried that I will stay this way and the pain won't go away. I don't know how long the increased dose may take to work. I remembered that hypericum (St John's wort) oil is good for nerve pain, and since I've got some, I plan to rub that on my chest soon. Does anyone have any other ideas?

  • Nursepatient35
    Nursepatient35 Member Posts: 106
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    Aussie-cat, that nerve pain is awful! I'm so sorry you are having it. I had a double mastectomy in February and it went away after probably 6-8 weeks. Those nerves are healing right now and reconnecting. I never went on any nerve medicine. (I wanted it but the doctor's kept holding off giving it to me). My oncologist did say that a menthol cream helps. The cooling sensation kind of tricks your body. I found some icy hot with lidocaine and that really did make it feel better. There's lots of creams out there-just look at the ingredients and make sure it's just menthol or menthol and lidocaine. When I had mine, it felt like the worst scratchy sunburn and anything touching it made it worse. Good luck to you. Hope it helps and gets better soon.

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Nursepatient35, thanks so much. I'll look into menthol creams. I thought it would be heat cream but it's interesting that you're saying it's cooling instead.

  • Lula73
    Lula73 Member Posts: 705
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    Vagisil cream also helps with the nerve pain. There is nothing in it that actually treats any feminine problems. It's active ingredient is benzocaine 20% which numbs the pain similar to lidocaine Nurse35 mentions above. The other ingredients are moisturizers. I recommend name brand and the Walmart brand (Target brand did not rub in well.) Vagisil is very easy to find in any pharmacy or big box store. Hoping you get relief soon!

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Thanks, Lula73. I already tried Vagisil cream after reading this thread. It didn't really help much but thanks anyway.

  • lanne2389
    lanne2389 Member Posts: 220
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    Aussie-cat

    I had the same nerve pain across my chest - a sand paper feeling around the perimeter of the TEs. Very painful. I'm 13 months past surgery and the feeling has finally calmed down. I was on gabapentin (an alternative to Lyrica) and that worked well. Then I switched to Cymbalta (which addresses both anxiety and nerve pain). I added curcumin and that worked even better. I've had to stop the curcumin (Tumeric) bcs of upcoming surgery and I can feel the difference. If Lyrica doesn't work for you, gabapentin might. Don't settle until you have the pain under control ie to where it doesn't control you . It is so exhausting to deal with on a long term basis. Hope you find your solution soon!

    Lanne


  • ReadyAbout
    ReadyAbout Member Posts: 145
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    I had horrible nerve pain following bmx and after my PS blew it off for 3 weeks, he finally relented and sent me to a pain specialist. I am on Cymbalta and I also use a topical ibuprofen cream called Voltaren. Both have been very helpful and I just wish my PS had listened to me earlier when I told him about bad the pain was. It's like he had never had a patient with neuropathic pain before, and I find that hard to believe. I feel much, much better on Cymbalta - still residual sensitivity, but nothing like it was before.

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Nursepatient35, thanks for your suggestions. I bought some menthol Ice Gel today and put that on and it maybe helped, but everything I put on seems to make me more sore right between my two small "breasts". I will try it again and see how I go.

    Lanne2389, I'm so glad your nerve pain finally calmed down. I will write down the other medications you suggest and tell my doctor about them on Tuesday. I'm also getting a referral to the pain clinic at the hospital where I had the surgery but I don't know when that will be.

    ReadyAbout, thanks for your ideas. I wish your doctor had listened to you as well. It's amazing how little doctors know at times! I'm so glad the Cymbalta has been helping you. I will investigate Voltaren too.

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    I've been using the menthol gel and I think it helps some. I saw my doctor today and she said to increase the dose of Pregabalin and in a few days to double it, so I hope that helps. Thanks for everyone's help.

  • denise-g
    denise-g Member Posts: 353
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    I am almost 7 years out from a UMX and still have periodic nerve pain, shooting pains,

    phantom nipple pain, etc. Something doctors don't tell you!!

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Denise-G, I'm sorry you still get pain from your mastectomy and the doctors didn't warn you what it may be like. They certainly should have told you more about it. The doctors didn't tell me much either but I looked at this forum beforehand so I was a bit more prepared.

  • orangedaisy
    orangedaisy Member Posts: 129
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    I stumbled on this thread with google. I’ve got that sandpaper sensitivity above my node scar and sticky underarms. Clothes bother me. Tommy Copper compression camis help. Bras drive me mad, even cotton sports bras. I had a double mastectomy in Oct 2017, cancer on the left. Both sides were extremely sensitive, especially at night. I had to sleep in a snug cotton cami. I can’t remember how long that lasted. Seems like 6 months. 6 months after surgery and 3 months PFC, my left breast started swelling and I got cellulitis above the node scar. Had surgery. Dermal matrix hadn’t integrated in one spot. Hematoma cleaned out. Implant replaced. 3 months of antibiotics. I still have a reddish brown discoloration from the cellulitis above my node scar, and it’s still super sensitive. Not sure if it is from the cellulitis or nerve pain from the node removal, and multiple surgeries. It is annoying and distracting. I wouldn’t call it painful. The Oncologiist NP said lots of women have sensitivity for a long time. Conconut oil helps. I have a jar at work to use during the day. I take magnesium. I’m going to try menthol. I’ve wondered if there are OTC meds that might help. Antihistamines or antacids sometimes work on otherthings.

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Orangedaisy, I'm sorry you've been through so much. I haven't heard of any OTC meds that help nerve pain apart from topical ones like menthol gels and numbing creams. I'd be interested to hear if you find one.

  • gaspasser
    gaspasser Member Posts: 5
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    Hi,

    I'm so sorry you are having this pain. I had a BMX TE in end 2015. Since then I've had a pesky postop infection following exchange to my implants and have required numerous wound debridements and now a wound vac on my one side of chest (the other implant is fine, never had infection). The first year following BMX I had a significant amount of nerve pain on the one side. Also very frequent chest wall muscle spasms. I did take valium postop and through the expansion process. I also ended up with PT which seemed to help some of the under arm nerve pain.

    After about a year much of the nerve pain improved. I did feel the odd trickle feeling down my chest almost like a let down feeling after breast feeding for about 18 months post BMX. At about 18 mon to 2 yrs that went away. I do have some nerve pain still, but if it gives you hope I feel the nerve pain continued to improve up until 2 yrs post and I am feeling better than I did postop. Stretching helped some, exercising what I was able to, but also just the passage of time.

    Keeping my fingers crossed for you all,

    Sara (gaspasser)

  • LKinKC
    LKinKC Member Posts: 41
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    Hi everyone

    I am so glad I found this discussion board. I am almost 2 months past my DMC with implants. I dont have the burning pain anymore but do have sensitive skin in area's and pain in different areas of the breast. I'VE tried gabopenten but the side effects are bad for me.. Thanks for the advice and glad to know I'M not crazy.

  • lanne2389
    lanne2389 Member Posts: 220
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    Hi - thought I'd write an update on me for those of you with hypersensitivity after mastectomy and perhaps looking at a second surgery of some kind with trepidation.I had BMX in June2017 with tissue expanders (pre-pec with aloderm). Had terrible crushed glass/ sand paper feeling for months and months. My pain area was a ring around the expanders, worst on my chest. Was on Gabapentin, then Cymbalta and Tumeric. The pain slowly lessened and at 13 months was almoooost gone. Then I opted for DIEP surgery instead of an exchange to implants. The scratchy feeling is back, but I'd say it put me back only a couple of months (but I'm still healing so could possibly get more feeling back). Anywho, just wanted to say the impact of the second surgery was so much BETTER than I feared. For those of you looking at a second procedure and worrying about the hypersensitivity I hope your outcome is as good or better than mine.

    Lanne

  • Calee65
    Calee65 Member Posts: 41
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    Orangedaisy, i have nerve pain under my arm and across my chest from bilateral mastectomy. I take Gabapentin and use Magnesium cream..the cream helps a lot to soothe when it’s really screaming at me. I get it at a health food store.

  • Druanne
    Druanne Member Posts: 74
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    I was wondering what this is that I've been feeling! I am only 3 weeks out and my armpits burn and my breasts feel sunburned. If a hair or the tip of my shirt touches in between my implants near the top.....it is MADDENING!! Like a cross between a tickle and pain. Also, I have a grape sized lump under my right armpit that hurts. My BS says it may be axial breast tissue (ultrasound showed it was not fluid filled) or got clumped somehow when the implant was attached. She said she wants me to finish healing before we address it. I had a skin/nipple sparing bilateral mastectomy. I was supposed to have tissue expanders because my left breast had been radiated 7 years prior but I woke up with implants. I am happy about that...and am very grateful.....I wasn't prepared for this burning. ALSO......I am having this thing.....if I scratch a mosquito bite on my wrist or leg or something similar......I get a sharp pain in my breast/s. Is this because the nerves are all messed up?? My fiance keeps telling me to take Tylenol but Tylenol doesn't touch this pain! It is not excruciating for me but it is very unpleasant and uncomfortable. I may try some of the creams mentioned in this thread! Thank you! Hugs for you all. <3

  • debal
    debal Member Posts: 600
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    hey druanne! I remember you but forget what threads I'm on! . I had that sunburn/ nerve sensitivity feeling at the beginning after surgery. A shirt or sheet over the area drove me crazy. I remember a shower and gentle massage to the area helped. I don't remember how long it lasted but it's gone now.

    Yes. Maybe try some of the creams suggested for the mosquito bite issue. I'm guessing it takes awhile for the nerve issue to settle down. There are meds for nerve pain you can ask for if things don't calm down. I hope you heal quickly and each day gets better for you!

  • bluepearl
    bluepearl Member Posts: 133
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    I had that exact pain. It scared me that it was a "forever" type pain and couldn't stop crying. Interestingly, the ativan helped a little bit and I was glad for little bit. One and half years and it disappeared. It takes a while for nerves to heal and most of the time they do. I was a bit put off that I wasn't told this could happen. The second time, I went to a larger centre and had sentinel node done and that came out fine. I didn't think I could bear that pain again. Hang in there and let your nerves heal. Sometimes an antidepressant helps too.

  • WC3
    WC3 Member Posts: 658
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    I've developed "the sunburn" in the skin above between my breast reconstructions. The odd thing is, this is the exact sensation my mother and I have on the outer sides of our upper arms. She has fibromyalgia and thought it was from that, but I don't, and I have no muscle in the regions I have the pain. This kind of pain can also be caused by carbon monoxide poisoning, but we never had any major CO issues where we have lived.

  • LindaSchminda
    LindaSchminda Member Posts: 1
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    Hi. I saw someone mentioned trying a lidocaine cream, and now I can't find her post. Did you use something like a sunburn Solarcaine? Did your doc approve the 5% lidocaine cream? Were you able to put it on both your nipples and your chest area? Can you buy this OTC? Some else mentioned a Menthol Gel, any brand name suggestions? Of course it would have to be odor free too. Thanks.

  • aussie-cat
    aussie-cat Member Posts: 5,499
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    Linda, I don't know about lidocaine cream where you are but maybe you could ask in a pharmacy or drug store. The menthol gel I've been using is called Ice Gel (I'm in Australia). The gels tend to be in an alcohol base and so they are a bit drying but the menthol feels good. I like to get things without a scent too but menthol has a scent in itself. Again, asking questions in a pharmacy can be helpful. I hope you find products that work for you.

  • lanne2389
    lanne2389 Member Posts: 220
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    Linda, you might be referring to Lula73’s suggestion to try Vagisil cream?

    Lanne

  • Nursepatient35
    Nursepatient35 Member Posts: 106
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    I used Icy hot with Lidocaine. It worked pretty good and then the burning pain eventually went away on its own. My oncologist mentioned an OTC menthol cream. My plastic surgeon was fine with rubbing cream over the incision after about 2 months of healing.

  • wannabeflat
    wannabeflat Member Posts: 2
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    I found this thread about a week ago. I'm just over 4 weeks out from a BMX, no recon, and have had this problem. I'm not yet cleared to put any creams or ointments on the area but have tried some of the suggestions mentioned here: gentle massage and stretching 2-3 times a day and exposure to different fabrics, even if just for a couple of hours. When it really flares up I just touch or rub the area very gently with my fingers. I have noticed a huge improvement since I started this. I think the skin, nerves and muscles had become hypersensitive to touch and movement and keeping them overly protected was just making it worse. I hope this might be helpful to someone; thanks for everyone's comments and suggestions.

  • Silverpullet
    Silverpullet Member Posts: 1
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    I feel like I need to comment on what I have dealt with myself. I had a double mastectomy in October 2016 recommended by an oncologist because of extensive family history and I have the BRCA2 gene. After surgery they found stage 0 cancer under a nipple, so went for second surgery to get both nipples removed. No treatment necessary after that, I did get implants put in later as well.. Anyway so now I am just over 2 years out. I still get the “itch” under the implants so not reachable. I don’t get it as often anymore. As far as pain, I had extreme pain under each armpit after surgery, including the burning pain. I attribute it all to the drain tubes and the scar tissue in that area. I will have days still where even the sports bras hurt even if they are not tight. It feels a lot like the pain when I would wear a bra that had an underwire that would dig in. I will physically get red welts. My PS told me to never be without a bra though to keep implantsfrom navigating and that’s okay as I cannot tolerate going without one anyway. Had that pain tonight which is what prompted me to come here looking for answers still. My absolute worse pain though, is just in my little fat rolls ( for lack of a better description) just under each breast. That is where I had gotten much tingling sensation from the nerves, but when I am just standing at work and not physically doing anything like lifting, the pain is excruciating. Anyone have any of that pain here

  • acryan
    acryan Member Posts: 4
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    Hi, I realize this post was years ago but I am two weeks post-mastectomy and have this continuous sandpaper against skin feeling across my chest that gets worse when clothes or anything rubs up against the skin. Hoping SOMEBODY on this thread has had luck with this sensation subsiding! Please advise.

  • moderators
    moderators Posts: 8,097
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    Dear acryan,

    Welcome to the BCO community. We are sorry that this post operative discomfort has brought you here. We are glad that you reached out. As you noted this is an older thread that has not seen recent activity. Your post might gain more attention if you start a new topic in this forum. Here is some information about post mastectomy concerns, including nerve pain. It can be found on our main site. Let us know how we can help you to find the information that you need.

    The Mods

  • wannabeflat
    wannabeflat Member Posts: 2
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    Hi Acryan,

    I just wanted to let you know that I had that exact same problem for a few weeks and it completely subsided without any medical treatment. I found it was helpful to desensitize it by gently rubbing it or massaging it as tolerated, and wearing a variety of different materials against it. Laying something cool on it also made it feel a bit calmer. My daughter experienced this too and it also went away on its own. Hang in there - it will get better.