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Hypersensitive skin/nerves after mastectomy

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245

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  • Kim1965
    Kim1965 Member Posts: 1
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    i just had double mastectomy with recon in Jan and am feeling the same sunburn/burning you describe . Mine burning is front ,sides, back in my chest area and moving down towards my belly. I dont sllep much at night and am most confortable on couch sitting up. Certain fabrics are worse than others. Im told it must be from nerves and they cant do anything for me. I was hoping to go back to work after week 3 and I'm in week 10 and only working few hours a few days a week because of this burning. I seem better in my tight fitted bra for about 4 hours and rhen it must come off!

    Im sure hoping we can be patient, but this is exhausting

  • moderators
    moderators Posts: 8,067
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    Dear Kim1965,

    We are sorry for your diagnosis and the post mastectomy pain that you are having. We hope that you will stay connected here and benefit from the support and shared experience of others in the community. Let us know if there is anything we can do to help you to navigate your way around the boards. The Mods

  • AliceKo
    AliceKo Member Posts: 44
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    Kim, I am in the same boat. Post Mastectomy pain syndrome. Went to pain clinic to get the diagnosis. a dr in his new harvard sweatshirt told me that it will most likely not get any better and it is due to the nerve damage after the mastectomy procedure. He told me that he could give me anti-depressants. I asked him how would anti-depressants help with nerve regeneration and he told me that it would not. But they have to give something. Right? For some people a placebo is enough. But medications come with real side effects and we need to decide if they are worth it for us. Many anti-depressants cause weight gain and sexual issues and if it is just working as a placebo, there could be a better placebo.He told me I could try Gabapentin. I tried it even before I saw him, I am up on this stuff. It did not work at 300 mg. If you go up to 1500, it may "work", you may just be too dizzy to get out of bed, don't drive that's for sure, at least for a few days until you know, or maybe it gets better. There is one more medication similar to Gabapentin, I will look it up and post it later.

    What actually helps - Craniosacral therapy - it's a type of massage, but it is very different from a regular massage. It's massage for pain. i will start accupuncture tomorrow, will let you know how that works. Cupping - helps a little, vacuum assisted little plastic cups that are placed on the affected area (such as arm). I use a heating pad, I like the warmth, but it does not really do much. Swimming helps, but not right away. I have also tried to go to the sauna, thinking it might help. Some people use yoga nail mat helps to relieve some pain temporarily. Also, there is electric stimulation that helps rehabilitate muscles and maybe even nerves after surgery (I own an Ultima TENS/EMS unit, 4 prongs) I will try to post a link.

    Ultima TENS/EMS Stimulator Unit | Quill.com -

  • Lula73
    Lula73 Member Posts: 705
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    Delsie- So glad the vagicaine worked for you. Nerve pain is miserable.

    AliceKo- The doc likely recommended anti-depressants for 2 reasons: 1) anytime our bodies go through stress of any sort, our serotonin, norepinephrine &/or dopamine levels tend to drop and we in turn feel pain more intensely. Taking an anti-depressant increases the activity levels of those naturally occurring brain chemicals and we feel the pain less intensely or not at all. 2) Along those same lines, serotonin, dopamine & norepinephrine are our brain's "feel good" chemicals. Increasing the activity levels of these chemicals in our brain makes us feel better in general including chronic pain relief for many. Its not always about classic depression. It actually comes down to different systems in our body's reacting what the body is going through and how we can reverse the process to some extent.

  • Beatmon
    Beatmon Member Posts: 617
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    I can tell you the exact moment I was struck with PSPS. At 3 weeks post op I suddenly could not even stand for a fan blowing on my skin. I did end up on the big doses of gabepentin. I have been lucky in the severe pain is better. I'm off of gabepentin...still have pain but at a level I can live with.i hope you have even better results

  • dtad
    dtad Member Posts: 771
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    Hi everyone...I also have post mastectomy nerve pain and costochondritis. Nothing really helps that much. Tried Neurotin but did not get much relief. Nerve pain is horrible!

  • Nursepatient35
    Nursepatient35 Member Posts: 106
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    Dont know if someone already mentioned this on here or not but my oncologist said she recently went to a seminar that talked about neuropathy. They talked both about neuropathy from chemo and nerve pain from surgery. They found that menthol creams have been helping. She specifically said a 2% menthol cream and mentioned Dermacool which can be bought off Amazon. I looked it up and it's about $40 but seems like it'd be worth a shot. I'm hearing more and more that this nerve pain after mastectomy might be a permanent thing. She said the nerve meds like gabapentin have some bad side effects so if you can get relief from a cream, you'd be way better off. I guess we'll see.

  • bluepearl
    bluepearl Member Posts: 133
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    I had it foe 1.5 years. I thought it was something I was stuck with for the rest of my life and felt miserable until I read about a fellow that had the pain from a lung cancer operation for 3 years. Gave me hope. Hope worked. Perhaps try a magnesium cream or magnesium supplement....just do a search on it for pain.

  • Lula73
    Lula73 Member Posts: 705
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    vagisil cream is far cheaper than the menthol cream and works great. I know it sounds crazy to use it elsewhere on your body but the effect is the same. It contains 20% benzocaine and there is nothing in it that actually treats the cause of vaginal issues you might use it to help with meaning you can use it in other places. Avoid the eyes though!

  • Nursepatient35
    Nursepatient35 Member Posts: 106
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    Lula73, thank you. I'm going to try that first since it is cheap. I need to check first though with my PS. I'm only 4 1/2 weeks post op so not sure if it's ok to put any creams there yet.

  • aweate
    aweate Member Posts: 13
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    did yours resolve? I am 16 days out from bilateral mastectomy and I am having that sunburn feeling? I hope this isn't permanent?

  • AliceKo
    AliceKo Member Posts: 44
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    Something that works! I have discovered that if I wear compression wear or even corrective wear, you know like SPANX, my pain is much better., especially the intercostal neuralgia. So, I have been wearing this very tight tank top and will order a long sleeves compression shirt in hopes that my arm (where sentynel was done) will feel better too. Maybe it can help someone else too

  • AliceKo
    AliceKo Member Posts: 44
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    Lula, 20 years ago they recommended Opiates, high doses. And some people trusted their doctors and took them and developed serious issues. Today, I am thrilled they no longer recommend those. I am not thrilled with what they do recommend. I am interested in resolution, healing. Distracting myself at the cost of side effects (experienced personally by me - sexual, weight gain) is not something I want to do right now. I have tried anti-depressants and I am actually for them, but my chemo affected brain is working differently now.

    But I understand that what I am looking for may not be here yet. And the demand is low. Most women don't say anything about pain to their doctors, they are just so grateful to be alive. Doctors don't ask about pain. No studies are going on in the US. I have asked my oncologist at the major US teaching clinic/hospital collaboration. Nothing. That needs to change. Survivors need to be able to resolve their pain issues.

  • ah12
    ah12 Member Posts: 1
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    I'm 2 weeks post bilateral mastectomy and the prickly, harsh sunburn feeling across my chest is awful. Worst when any fabric touches skin but bad even with no shirt on. Surgeon's office recommended 800mg ibuprofen every 6 hours and to check in tomorrow if that doesn't help. I may ask about topical ointment instead of Gabapentin or other drugs based on comments in this thread.

    Only relief I've found so far is putting ice packs across chest but can't sit around all day with them on.

    Thanks all for helping me know I'm not just dreaming up this pain! Just sorry others have experienced it too.

  • Lula73
    Lula73 Member Posts: 705
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    AliceKO- I completely understand especially the brain not working the same after treatment. I was discussing that with my hairdresser today and he couldn’t understand that the mind changes from treatment are here to stay. Shouldn’t it go back to normal after the treatment is over? No, not necessarily. I agree 100% on the pain discussion. I think the problem is two fold: you have some women who (mistakenly) assume pain is part and parcel of this awful disease and don’t bring it up to their dr and Drs are outright scared to even write anything for pain anymore with all this media attention, law suits and state licensing boards getting in their business over this whole opioid mess. I don’t see it getting any better anytime soon unfortunately. Perhaps because of this opioid mess the pharma companies will put more effort into safer non addictive pain solutions. At least that would be a good thing to come out of this mess.

    Ah12- give the Vagisil cream a try to help ease the sunburn feeling.

  • Hogwarts
    Hogwarts Member Posts: 26
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    Hi all,

    This is a new post for me, but thank you for being here. I'm almost 3 years out, post-op from a BMX, and doing really well, except....

    Do have nerve irritation/pain with any forms, especially in the heat and humidity in Southern summers. So, going flat is the solution for this warrior. Taking the gabapentin taken at nite doesn't give me the brain fog/grogginess and is helping some with the nerve irritation. However...

    I've begun to have some really annoying itching under the skin and along some parts of my incisions. Have tried cortisone ointment but that does nothing. It seems like everything from that point is an irritant, and any friction only causes more itchiness. There are not bumps, no is no redness. The only relief is with a gel pack from the freezer, strapped to my chest. Don't think my skin likes anything on it! :-( Also, not sure I want to use Vagasil without checking with my doc first.

    What is going on?!? Anyone know what causes this?

    Thank you soooo much! Hogwarts/Judy


  • Lula73
    Lula73 Member Posts: 705
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    it can be nerves regenerating. Does it almost feel like ants crawling across/under your skin? And when you scratch you can’t seem to relieve/get to the itch? On the Vagisil, all it is is benzocaine and moisturizers. There’s nothing in it that treats say a yeast infection-you’d need Monistat for that. It’s actually the same active ingredients as Lanacane which is used for skin irritation, itchiness, bug bites, etc. The manufacturer of Lanacane no longer distributes it in the US anymore, and so Vagisil is the alternative. I hope you find relief soon

  • Hogwarts
    Hogwarts Member Posts: 26
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    Hi Lula73,

    Thanks for your response! Nope, not ants crawling. Just an itch that is only numbed by a cold pack. I've felt the nerves re-firing at times since I'm beginning to lose some numbness as the healing continues.

    Right now it's just this very annoying itch. I dare not touch it or it will get worse. I have had shingles on the sciatic nerve that only itch, so it might be those beasties under the skin. Did have shingles along one side of my torso about a year ago. Not comfortable with using the Vagisil but so glad you other ladies are and it brings relief.

    Hogwarts/Judy

  • Lula73
    Lula73 Member Posts: 705
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    oh good Lord! Let’s hope it’s not shingles again! I’ve had them twice and it totally sucks (as you already know).

  • lanne2389
    lanne2389 Member Posts: 220
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    Hi Ladies,

    I also still have the sandpaper feeling 10 months after BMX. I've been on 900 mg gabapentin (200 mg 3xday) and it works. I've not had sid effects except sleepiness in the late afternoon. Since I'm also been on Zoloft, my dr has okayed my suggestion to switch the Zoloft and Gab for Cymbalta. I'm to wean off Gab over 2 weeks. Just started yesterday and the switch to 800 mg of Gab today was tough! I'll report back on my progress.

    For those of you that have continued with reconstruction, did you see any improvement in the sandpaper feeling with the exchange to implants?

    Lula, I'm definitely buying vagisil tomorrow!!

    Lanne


  • Hogwarts
    Hogwarts Member Posts: 26
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    Hi Lula,

    Thanks for your concern! Yep, shingles again. Now that it's warm I can't hide under layers of clothing, so had to go out in public, flat. Wearing anything that touches the red, itchy, painful blotches is no fun. Someone on another thread recommended Body Glide and, voila, it worked!!! Was comfy while out all day running weekly errands. Held my head up and shoulders back without wearing foobs; didn't have a choice anyway. This is maybe the Universe's way of getting me past the self-consciousness of feeling like I need something that looks like breasts to feel myself, when they really don't define who I am at all, I just think they do. ::: wink :::: But that's another thread.

    Anyway, the red blotches have stopped spreading and life is more comfy with the Glide product, so it's all good. Hope you don't have any more shingles issues as it's such a bear to endure!

    Thanks! Hogwarts (Judy)

  • Lula73
    Lula73 Member Posts: 705
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    so sorry it’s Shingles again! But at least you have an answer, can get on some Valtrex and use the body glide. Indeed maybe it is the universes way of teaching you something. I hope it heals quickly for you. After it’s healed if you get the ants crawling feeling of nerves regenerating the Vagisil makes a huge difference..

  • Itiswell1976
    Itiswell1976 Member Posts: 2
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    VAGISIL works like a charm! It may take some time. Don't be discouraged if it doesn't help overnight. You'll get past it. :)

  • Mariev
    Mariev Member Posts: 1
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    Hi Anna:

    How are you doing now? I had a mastectomy, expander and now implant. I have itched and burned now for 1 year and 3 months. I have tried dermatologists, allergists, nerve paid doctors and I am still bad. It is in the bra line area, stomach and back. I am lost on what to do. I have heard of women being allergic to the implant and the body rejecting it. If you hear anything else let me know.

    Marie

  • snickersmom
    snickersmom Member Posts: 599
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    I wanted to weigh in here because I've been on Gabapentin for about 8 years due to nerve damage in my leg and foot. (800mg per day). The Gabapentin has never bothered me at all and I think it probably helped a lot when I had my BMX last year. I never had any pain at all nor have I had any of the horrible SEs you are all describing. My nerves still are refiring here and there but anything I have is pretty much minor compared to others. Wish I had some words of wisdom! Did not have any reconstructi8on and also don't wear any of the clunky mastectomy bras, so maybe that helps. The freedom of no bra is wonderful, especially in the southern heat.

  • lanne2389
    lanne2389 Member Posts: 220
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    I'm reporting back on my post from April 29. I've had a sandpaper feeling in my chest since BMX/TE surgery in June 2017. I was taking Zoloft and 900mg of Gabapentin and switched to Cymbalta, and I added Tumeric supplements. I've seen a definite improvement in pain management with this switch. I can get by w/o the Gabapentin (or might need 100mg in late afternoon). I can feel a little of the old discomfort but the sandpaper feeling is gone. I have neuropathy in my feet from chemoas well, and that has also improved. On the downside, it is harder to fall asleep w/o the nightly Gab but I don't feel as sluggish during the day. Yeah - finally apositive change!

    Lanne

  • macmomma
    macmomma Member Posts: 16
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    This is such a worrisome thread! I'm not sure yet, but I believe I'll be in a position to decide between mastectomy and lumpectomy with radiation. My instincts tell me mastectomy, but all the data shows that it's really no better than lumpectomy + rads. When I read the radiation side effects, they sound worse than the mastectomy ones! Is there no win/win with BC??

  • beach2beach
    beach2beach Member Posts: 245
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    Macmomma, no win win..lol. I did the double mastectomy. Itchy boobs come and go now. Feels under the skin..so I rub them for a few seconds. Nerves can regenerate for a long time. Not as bad as it was. Almost a year out. My armpits had the hypersensitivity..*from having sentinel node biopsy) which luckily has gotten much much less. Unfortunately we have to go through either a lumpectomy/mastectomy and see how it goes.

  • aussie-cat
    aussie-cat Member Posts: 5,496
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    Macmomma, I've heard that with a double mastectomy there is a 90-95% of no recurrence but I'm not sure of the statistics with a lumpectomy and radiation. I've just had preventive mastectomy because of my family history and I feel much more at peace now that I'm not likely to get breast cancer. I know each person is different though, so go with what your gut tells you to do.

  • Lula73
    Lula73 Member Posts: 705
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    macmomma-higher risk of local recurrence with lumpectomy vs mastectomy, overall survival rate (determined by calculating death from all causes within the study timeframe, not just death from BC) is the same. I chose BMX w/immediate DIEP flap recon. No regrets and would do it again in a heartbeat. Breasts are soft and warm, look like the they did before i had kids, I’m not even a year out from stage 2 recon and you can’t tell anything was done unless you know where to look and you look closely. I have feeling in most of my breast, but not the nipple though it responds to cold and touch. Hadit all done at NOLA.