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Hypersensitive skin/nerves after mastectomy

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az2017
az2017 Member Posts: 9

Hi, I am new to the forum, so I apologize if the question has been asked and answered in the past.

I had a double mastectomy 7 weeks ago (no recon) and the second week after it I started experiencing a strange kind of pain in the upper chest area and armpits. It feels like a bad sunburn being rubbed over with sandpaper. It only happens when clothes rub over it. I feel it is right along the part where the chest binder was. Surgeon said to give it a month as it will most likely go aware. 6 weeks after the pain started it hasn't gotten any better and desensitizing massage hasn't been that helpful. Unfortunately I had to go back to work last week and it has proven excruciating to wear clothes even for a couple of hours (not wearing a bra yet as the pain is worse where the bra straps meet the bra).

Doctor has now put me on nerve block medication (Gabapentin), 300 mg at night, not much difference after 3 days of taking it (and not liking the side effects so far). Has anyone experienced this side effect after their surgery (I didn't even know it was a possible side effect, the only nerve damage related issues I was warned about were pangs of pain or zingers while nerves regenerate or die and numbness in part of chest area)? If so, how long did it last? Does it ever get better or go away? Does anyone know of any non-medication remedies for it (my doc said acupuncture might help)?

Thank you in advance,

Anna

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Comments

  • MarilynIllinois
    MarilynIllinois Member Posts: 50
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    Hi Anna, yes, I feel a lot of skin changes since my mastectomy (right side, no recon.) 14 weeks ago. Right from the beginning I noticed an itch in the middle of my back. After surgery my armpit felt like it was glued together. It's better now, but occasionally feels sticky.

    A few weeks ago I was fitted for a prosthesis and new bras. The prosthesis feels fine but the bras feel so tight against my skin, I cannot wear them. I am most comfortable in a soft cami. I wear the post surgical cami and a knitted knocker when I go out.

    Have you tried reapplying lotion throughout the day? Good luck, sorry I can't offer more help, but you are not alone. Marilyn.

  • ravzari
    ravzari Member Posts: 32
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    That can be pretty normal and, for most women, those sorts of things resolve by 6-8 months, though for some women it's permanent.

    My skin, where it wasn't numb, felt 'sunburned' for probably four or five months after my mastectomy, but it eventually settled down as nerve endings reactivated properly.

    I found wearing shapewear (like a spanx top) helped as it was tight against the skin and didn't move for the most part, then wearing a shirt over that worked out pretty well so the shirt just rubbed the spanx instead of rubbing against the skin.

  • az2017
    az2017 Member Posts: 9
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    Thank you for your reply and advise, Marilyn!

    I am applying Vitamin E cream when I am at home, but can't do that while at work (clothes tend to stick to it and make the pain worse). I understand what you mean about wearing the bras and prosthetics, I am still not able to wear either. Good thing it is winter and I can wear bulky clothes and loose here in Michigan, but eventually I will need to brave the bras :)

  • az2017
    az2017 Member Posts: 9
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    Hi, Ravzari,

    I am glad the sunburn feeling resolved for you (although to have it last for that long must have been torture). At this point, I will settle for months if it resolves for me as I don't know how one can go on about daily life with this kind of pain permanently (especially having to go to work every day and also be the caregiver of my mom who is going through breast cancer treatments). Some days I fear this more that I feared a cancer diagnosis itself. Thanks for your tips on wearing the tight clothing. I will give that a try.


  • NotVeryBrave
    NotVeryBrave Member Posts: 169
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    I had a lot of that super sensitive skin after surgery. I remember feeling like my armpits had been shaved too close - almost expecting to find them weeping or something. And the skin across the top of my breasts was very burned feeling.

    My PT at the time suggested using different coarseness fabrics to stroke along the skin at varying pressures and directions. It's something about retraining the nerves. It sounds horrible when you're already so sensitive, but it really did help.

    It's been 6 months for me now and I still sometimes have places that itch or feel sore but not like that. And I still use the massage setting on my handheld shower each day!


  • coraleliz
    coraleliz Member Posts: 158
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    I wore sports bras of varying compression. It just depended on what I needed that day. I'm over 6 years out & still can't go without, unless it's a super soft fabric. The hardest part was getting into the sports bra. Especially during the early days.

  • az2017
    az2017 Member Posts: 9
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    Hi, NotVeryBrave,

    The massage to desensitize the nerves is what my PT suggested too and I have been doing it for 6 weeks now without much relief (maybe I am doing it wrong). Did you alternate between textures or you started with the softer ones and moved to more coarse one once the softer ones didn’t cause pain anymore?

    The surgeon also mentioned acupuncture, I am not sure if anyone has had relief from this kind of problem with acupuncture

    Anna

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
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    I just had a couple of washcloths that were different feeling fibers. I kind of just rotated through them each time - not a progression or anything. Trying different sprays in the shower helped me as well.


  • ksusan
    ksusan Member Posts: 461
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    I was super sensitive for months. I couldn't put my hand on parts of my chest--it felt like acid. Wearing a shirt was a challenge. I found I could wear pima cotton and smooth silk, but nothing else (and at that, I'd need to take a break after a few hours). Emu oil helped a lot. Now I can still get irritated if I'm wearing something uncomfortable for too long, but I can even manage several hours in a tee shirt with a big scratchy decal in the front.

  • toughcookie
    toughcookie Member Posts: 5
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    I'm 7 months post BMX and 8 weeks PFC. The side with the huge cancer is still extremely sensitive. I can't even handle a featherlike touch on the incision. It feels like it might be nerve or phantom pain. I do see a massage therapist monthly and she does some fascia release work and that helps a bit. I'll be starting radiation soon and don't know how I'll apply creams etc if I'm can't even lightly touch my scar without cringing in pain. Will his ever go away

  • Lula73
    Lula73 Member Posts: 705
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    I’m sorry you’re dealing with this ToughCookie. Do you think you could handle a numbing cream application first so you could apply any other creams after without discomfort? Vagisil cream numbs pretty fast. Might be worth a try.

  • beach2beach
    beach2beach Member Posts: 245
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    3months out and I still have areas that are very sensitive. Was very much so for this first few weeks. Still have to be very careful under my right armpit to shave, very sensitive and the backs of both arms are still sensitive. Numbish feeling.

  • az2017
    az2017 Member Posts: 9
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    I haven't posted for a while on this thread. My surgeon started me on Gabapentin when the sensitivity didn't improve at 7 weeks post op. The medication helped, started to see improvement the third week after I started it, but I had to stop it at the end of the 3 week as I had to go for a colonoscopy. The side effects were really bad though (sleepiness, drowsiness, lack of concentration/coordination and worst of all, memory loss), so a week after I stopped it, I still haven't gotten back on it because of them. The sensitivity has come back a few days after I stopped, but not as bad as it was when I started the meds. Doc suggested I go on a lower dose, but I am thinking of just sticking it out for a couple more weeks. I guess patience is the name of the game with this kind of pain (a friend of mine said it took her almost a year for her sensitivity to subside).

  • OCDAmy
    OCDAmy Member Posts: 289
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    the back of my arm is still numb and sensitive and seems to be getting worse after 7 rads. I also have a spot on my Breast near underarm if I touch it I get a weird zing. Ugh! So tired of this

  • az2017
    az2017 Member Posts: 9
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    Yeah, I didn't think you could be numb and hurt on the same spot either. Back of my arm where lymph nodes were taken out was numb and sensitive for 6 weeks, but the sensitivity settled down as the numbness fully set in. At this point, I will take numbness over the sensitivity pain anytime and anywhere.

  • micmel
    micmel Member Posts: 9,869
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    use 5% lidocaine ointment, not cream. I used it for months until my mastectomy nerves calmed down. Worked like a charm.!! Good luck and wish you well ~M~

  • Lula73
    Lula73 Member Posts: 705
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    vagisil cream also works great!

  • RoseBlanc
    RoseBlanc Member Posts: 5
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    Dear All,

    I had a skinsparing double mastectomy with recon two weeks ago. I have recovered beautifully but cannot cope with the ‘sanded’ sunburn feeling - both breasts. It eats away on my nerves - the constant irritation and pain. No painkillers numbs it- is that possible! When reading this blog about women struggling with it for months i know I am not brave enough to live with it for months. Any good news out there?

    Do you need a script for “ vagisel’ cream? I live in Cape Town, not sure if we have the same creams - can anybody please let me know the ingredients in Vagisel

  • Lula73
    Lula73 Member Posts: 705
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    vagisil is an over the counter cream you should be able to find in the feminine products aisle. It’s typically used to help soothe the outer genital area when you have a yeast infection. If you have a Walmart in your area their brand is called vagicaine. Active ingredient is 20% benzocaine. Alternatively, if you can’t find vagisil an If lanacane is still available where you live it has the same active ingredient. If you don’t see lanacane and ask the pharmacist he’ll likely point you to an antihistamine cream like Benadryl which is not the same and will not numb the pain. Lanacane is no longer available in the US and that’s why we use the vagisil. Hope this helps!

  • Lula73
    Lula73 Member Posts: 705
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    image

  • az2017
    az2017 Member Posts: 9
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    Hi, RoseBlanc,


    So sorry to hear about you experiencing this horrible pain. I understand different things will work for different women, but the only way I was able to find some relief has been Neurontin/Gabapentin medication (it is used for epilepsy, but found to help nerve pain). I tried just about everything (as I don’t like to take medication if I can help it and I didn’t like its side effects), but after struggling with the pain for weeks, I decided to give it a try. It has reduced my pain to about 20% of its original intensity and I am hoping to gradually get off of it in the next few months

  • RoseBlanc
    RoseBlanc Member Posts: 5
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    Dear Lula73, thank you for your kind advice, will get to the pharmacy tomorrow and see what is our equivalent cream. Will keep you posted.

  • RoseBlanc
    RoseBlanc Member Posts: 5
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    Thank you for the advice. I will ask my doctor for a script. Like you I am not keen to take any meds unless absolutely necessary. I still hope I will wake up one morning and find the pain gone!

  • RoseBlanc
    RoseBlanc Member Posts: 5
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    Anna, are you feeling better? My 'sunburnt sanded ' feeling boobies are really having a awful start to 2018. Any good news?

  • az2017
    az2017 Member Posts: 9
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    Hi, RoseBlanc,


    I am feeling much better since I started taking the medication. I really believe it is helping me (as I stoped it for about a week for a procedure and the pain came back), but if your doctor does prescribe it for you, I suggest starting with the lowest dose (as itcan really make you drowsy). I started with 300mg/day and I couldn’t take the side effects, so I asked the doctor to go on the lowest dose (100 mg) and it has been working for me. It takes at least a couple of weeks for its effect to take place though. My surgeon also suggested acupuncture but I haven’t tried that yet. Hope you get relief any way you can. Hang in there, it seems this does take time to resolve.

    Happy New Year! May the troubles and worries of 2017 be forever behind!

    Anna

  • RoseBlanc
    RoseBlanc Member Posts: 5
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    Dear Anna,

    It is now 8 days later. My doctor put me on Lyrica, ( for treating epilepsy) it definitely made the pain more tolerable but the side effects was terrible. I was dizzy and clumsy , an gained 5 pds within days.

    I went off it yesterday and my GP put me on ‘Hypericum ‘ a natural remedy.

    The pain eats away on my well being. 😢

    Xx

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
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    RoseBlanc - The PT that I saw after surgery told me that the pain and sensitivity is from the nerves being irritated. She recommended "retraining" those nerves with exposure to different sensations gradually. I started with very smooth and soft fabrics and moved on to rougher textures and massage settings on my shower head. You just wipe or rub the item across the skin 2-3 times per day.

    It sounds horrible when you have this crazy hypersensitive skin, but it worked for me.


  • Delsie
    Delsie Member Posts: 1
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    Lula,

    Thank you so much for posting about vagicaine at Walmart. It worked great! I was miserable with nerve pain and like others said it was wearing me down. I had a double mastectomy 3 weeks ago but was not able to begin reconstruction because my skin did not have adequate blood supply. I’ve done 20 hyperbaric oxygen treatments to help skin. Skin has greatly improved with hyperbaric treatments but they may have intensified the nerve pain after 10 of them. Nothing helped me until I tried vagicaine. which was only cream I could find with 20% benzocaine. Can’t thank you enough for letting us know about it. I was getting depressed but think I can make it.

    Delsie

  • moderators
    moderators Posts: 7,928
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    Dear Delsie,

    Welcome to the community. We are so glad that you reached out to our members for sharing your story. We hope that you will stay active here and we hope to see you around. The Mods

  • az2017
    az2017 Member Posts: 9
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    Hi, RoseBlanc,


    Just checking in with you to see if you have had any relief with the Hypericum?


    Ann