Skin hypersensitivity continuing

janiceh

I had my double mastectomy on March 28 and am having my TE exchanged this Thursday July 19. Yeah! I am continuing to have significant skin hypersensitivity and wonder if this is typical. I have looked through a number of topics but have not found anything quite like this. I cannot tolerate any material lightly touching my skin even though I try. I am wearing a sports bra much of the time but find the bra is also uncomfortable. When possible I do not wear a shirt but clearly this is not a good solution or something I can do anywhere except at home. Do any of you have an idea how long this will last and if there is any solution? Thanks.

ckolendar

Janiceh I too had a bmx and have skin sensitivity. I am most sensitive under the breasts where the elastic of a sports bra rubs. I am still in the process of expansion. I use an ace bandage instead of a bra, but even that by the end of the day is chafing and irritating.

I asked a friend whose mom had the same kind of surgery and reconstruction as I am going through. She said her mom could never tolerate a bra again after her surgery...My PS has not been able to give me any clear expectations on whether the sensitivity will lessen over time...let me know what you find out. I am curious if it will lighten up or if I will have to learn to endure.

Blessings to you.

janiceh

Hi ckolendar. I am sorry for the slow response. I had my TE exchanged on Thursday for the implants. Unfortunately the PS put in a size that is much smaller than I expected so I am going through some issues besides the physical recovery. It has been almost four months for me since my original surgery. I can barely tolerate a bra or even worse a light touch. I certainly hope this is not permanent. I have not been able to find out much but will let you know if I do. I will continue to search for a solution.

sweetbean

I was super sensitive for many weeks after my BMX and ALND - especially my arm.  I actually spent a lot of time touching my arm lightly to re-sensitize it.  It works.  Just very light stroking.

camillegal

Oh I still can't wear a bra may sometimes I tolerate a shports bra--I had no recon tho--Of course there is a lot that's numb under my arms so I feel nothing there but in frontit very sensitive and it's been  and it's been 5 yrs. since the start of my surgeries so I have no idea what everyone goes thru--My sister wears a bra sometimes otherwise she wears scarves around her--she had hers 4 months after mine. I hope u'r sensitivity to all this ends for u soom, but it's funny because even if someone squeezes on my skin I feel it differently

barsco1963

janice - I am a yr post umx (no reconstruction) and still have quite a bit of sensitivity. I try to wear light cotton t-shirts & no bra when I can. Perhaps try light, loose t-shirts or even silky camisoles that are softer on the skin.

When I do wear a bra I find that there is a lot adjusting throughout the day until I can get home to get it off again. I apply lotion to my scar area every day and it has helped a wee bit - I can at least do it now and not jump out of my skin. Some days are better than others.

jillj

janice- I had double mastectomy with immediate reconstruction with tissue expanders on 6/19/2012 and have had the hypersensitivity as well.  Last appointment I asked the PS about it and she said it was totally normal since all those little nerve endings were cut when the breast tissue was removed and are now repairing themselves.  As someone mentioned above, she said to rub all over the sensitive areas several times a day to de-sensitize the areas.  It is sort of self-torture but happily it does work.  I have only been at it for a couple weeks and have seen improvement so I will keep at it.  Hope that helps. 

janiceh

Hi everyone. Thanks for all the thoughful suggestions. It helps to have moral support and feedback. I hope I will not have sensitivity for years. I change bras more than once during the day but find the lighest touch, such as an unbottoned shirt, drive me crazy. Since that light touch bothers me the most I try to tolerate it several times a day until I just cannot stand it anymore.

exbrnxgrl

Sweetbean's suggestion about de-sensitizing worked for me. It was suggested by my pt. After using light strokes with my fingers, and becoming used to that, I would lightly stroke the areas with a soft, dry washcloth. Eventually, the sensitivity went away. I had a bmx with straight to implant recon , no TE's about 10 months ago. I don't need to wear a bra but am comfortable when I do. I usually can't wait to take it off at the end of the day, but felt that way even before my bmx! I hope this helps.

Caryn

hotandcold

My Physical Therapist also recommended de-sensitizing by lightly touching the area myself. I had bi-lat-mast.  When I started, it gave me the willies. It took about a year of working at PT and myofacial release for it to finally abate. I used a massage cream called "Free Up' used by PT's.   I am 3 years out and still have a small patch just below my collar-bone that sometimes gives me the creepies. Just a heads up, neither my surgeon or Onc. knew what to do.

MondaysChild

The desensitizing stroking worked for me, too.  In the beginning, I had three surgeries over 6 weeks and by the third one, the skin where my breast used to be over the tissue expanders was hyper sensitive.  A few months out a plastic surgeon, not my own but another, suggested I do the light stroking. It worked and with 30 days I was more normal.

janiceh

I read in one of the other threads about using small pea like shapes bought from Bed, Bath and Beyond to stimulate the skin. One puts these, I think, inside a sock or another container. I have not been able to find that post again. Do any of you have an idea what this is? I am light stroking, etc by hand and with a cloth but so far do not have any relief.

jillj

janice-  you are not going to get immediate relief.  It takes a number of weeks keeping at it.  I have been doing it for 2 weeks and have noticed a difference but it is by no means close to normal.  It basically has gone from cringing when I touch it, to being able to do the stroking without wincing.  Everything with BC seems to be "a process" and this is no different unfortunately.

exbrnxgrl

I agree with jillj. It really is a process so keep at it! Caryn

bluepearl

100% aloe vera massage worked for me and this anti-chafing cream sold in drug stores helped too.

janiceh

I had my TE removed last week and am now wearing a very tight surgical bra. I am quite uncomfortable so it is hard to tell about my sensitivity. The incisions are quite sensitive of course but some of the light touch sensitivity in the center seems to be less. I am hoping for the best. I will give the aloe vera a try. Thanks.

fredntan

I too had that weird pain. Its just nowgotten to the point my husband can touch that arm without me cringing inside

Marciw

RSD or Complex Regional Pain Syndrome? I have developed RSD after 2nd surgery and slightest touch is extremely painful so that after 20 days, still unable to wear any clothing against breast. Has confined me to house. Nothing relieves pain; am awaiting apptmt with neurologist who understands RSD. This is my 2nd episode; 1st one after fracture of wrist 2005. Anyone have experience with RSD in breast?

lionessdoe

I have a sister with RSD. And the sensitivity to touch is definitely a symptom. If the sugesstions don't help, see a neurologist that specializes in diagnosing RSD. Hers is so bad, that when even the wind blows, she is in pain. I too would like to know if anyone has experience with RSD of the breast?

cinnamonsmiles

I just chopped mine up to nerve damage from the SNB and scar tissue adhesions that keep coming back on the chest. I call mine post mastectomy pain syndrome.

I have been seeing a pain clinic since June or July 2011.This is what I am taking for meds everyday:

Amitriptyline 25 mg Tablet  1 Tablet by mouth once daily at bedtime for sleep and pain(This is an antidepressent that has shown to have some effects on pain for some people)

Gabapentin 600 mg Tablet    1 Tablet by mouth 3 times daily and ½ at HS for neuropathy

Metaxalone(Skelaxin) 800 mg Tablet   ½ Tablet by mouth(400 mg) up to 3 times/day (I normally only take Metaxalone at bedtime) Belive it or not, I can tell the difference when I stopped taking this muscle relaxer. Rarely, I will take it during the day.

Tramadol 50 mg Tablet     1 Tablet by mouth every 4-6 hours as needed for acute pain Sometimes Tramadol doesn't work as good, so I take the Vicodin combination when I can take another pill.

Hydrocodone-Acetaminophin 5-325mg Tablet      1 Tablet by mouth every 4-6 hours for pain

At first the pain clinic gave me Stillete Ganglion nerve block shots to the neck, but I didn't get much more than 3 weeks pain relief from that. 

During the summer of 2011, I also saw a pain psychologist who was utterly wonderful at helping me learn how to live with chronic pain.

So now I get every 6-10 weeks I go to the pain clinic for an IV Lidocaine Infusion, where they give me a bag of Lidcaine straight into the vein. They last up to 6 weeks or so. Howevere, they will lose their effectiveness. After 15 months of them, I can tell they are slowly losing their effectiveness.

My pain doctor now wants to put a wire up my spine that will send tingles into the nerves that think there is pain when there isn't. It is supposed to block the pain. I have decided that I am not going to get this done. I have enough problems without having something go wrong with that surgery. I hear that it can really work well.

I have had hyperskin sensitivity on my chest, sides of chest, around the sides of the back, upper back of arms,severe pain, uncomfortableness, those electrical shocks, since the moment I awoke from surgery on 1/11/11. Granted it is a little less than when I first awoke, but it is still bad enough that it interferes with my everyday life.

Doctors can't even begin to guess who will get it and when you will get better. It is impossible to predict when and how much one will (or if) one will recover from nerve damage. It varies unpredictably from person to person.

I have also had months of occupational therapy. There are many women who have benefited from it. Some get it for reducing the amount of skin hypersensitivity. My partner, Brian, actually started it last year without us knowing what we were doing. He lightly rubbed his fingers over the sensitive parts. Kind of starting to retrain the nerves. There is OT/PT for this as well.

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.

bluepearl

On another website a fellow who underwent extensive lung surgery said his intense pain lasted 3 years before it subsided and it did so fairly quickly. Apparently, it can take a very long time for nerves to heal but there is, at least, hope.

Artlover56

I am having the same skin hypersensitivity as everyone here speaks of. It is very disturbing to hear that it takes so long to resolve, if ever. I am trying some of the ideas, but it feels like self torture! So far my docs aren't very helpful. I'm trying to hang in there, although I have a lot of ongoing pain just as cinnamonsmiles. I am hoping it doesn't turn into long term issues. I'm only 4 weeks into this. Thanks for any help.

SueCA

Thank YOU Ladies for contributing to this thread.

I feel some hope that maybe the de sensitizing method might help. I have that Hypersensitivy as my incision is in my aerola just above my nipple.

Dec 3, 2013 I had a lumpectomy for a small invasive tumour and 8 nodes removed as the surgeon couldn't locate the Sentinel.

I had excruitiating  pain and just last week I got a script from my Family Dr for 600 mg a day of Gabapentin which works well now, FINALLY!  I do take Motrin 300 mg to top up in between and the two together are holding my pain now.

This is 6 weeks after surgery with just hydromorphone 1mg every 4 hours from the surgeon. Seems they just dismiss you after surgery is over and see you in 6 months.  I felt quite abandoned. I was calling all over to get some pain meds for relief.

The nerve pain seems to stem from the node removal area and then work its way down to where the breast tissue has been manipulated no where near the incision all up the side and underneath my breast.

I am Soooooo very grateful to You All for sharing your experiences as my lumpectomy survivors are telling me they didn't experience anything like this.

SueCA

I tried the de sensitizing gently with a soft cloth and the skin sensitivity is definitely much less. Yeah!  I am so happy.

Now to wean off the Gabapentin for the nerve pain from the node removal.  Wish me Luck!

Ariom

I too, had the sensitivity issues, both under my arm from the SNB and my skin felt like I had sandpaper rubbing on severe sunburn. I even gave a name to the  sensation that would come, usually at night, after I had overdone it during the day. The "Claw" felt like a very sharp claw was holding my chest and underarm

The only thing that helped all of these sensations was daily massage, along with the PT exercises. I did it religiously a couple of times a day with aromatherapy oils in  a wheatgerm, macadamia and sweet almond oil, but any good oil works. I started of with a gentle stroke, but worked up to a really firm massage. I still do it once a day after my shower. 

I also went to a massage therapist who did myofacsial release, on my chest so there were no adhesions. The results from all of this has been really positive. I am just over a year out from surgery and although I still have the numbness and the occasional zinger, from a regenerating nerve, it is all so much better. 

I had a similar experience years ago when I had extensive hand surgery. It completely went haywire with CPRS, or RSD, as it is called now and had to be re educated again. That was the sympathetic nervous system, but still a very similar thing. 

I never tried any of the drug therapy. I have a history of bad reactions to all kinds of drugs, so I avoid them wherever possible.

The nervous system and the brain connection is really interesting, my surgeon told me that a lot of the zinging I was feeling was just the two cut ends of nerves regrowing and searching for each other, and amazingly, sometimes they do connect. 

I wish everyone who is battling with these sensations all the very best. I hope that you can all find relief.

iwannaseeyoubebrave

I'm glad I found you gals.  I had my lumpectomy and sentinel node removal on 1/6/14.  I've been clipping along all week feeling awesome until last night.  The pain caught me by surprise.  It feels like sand paper rubbing against a razor burn under my arm.  I've been moving it and stretching as much as I can so this surprised me.  I'm going to try some of the tips you lovely ladies have placed out here on the board.  Anyone know if it's too soon, 11 days out, to be massaging that area?  I should have asked the doc upon dismissal.

Dogsneverlie

Boy, am I happy I found this thread!  I had a lumpectomy Dec 23 and scheduled for another one on Mon Feb 24 and I don't want anyone touching my left breast!  When touched, it has the feeling skin has when you are coming down with the flu.  I never would have thought of de-sensitizing.....not looking forward to trying that but I will.  Thank you!

Donna

Pinkbow47

Hi I'm 6 weeks post op I had a lumpectomy and my lymph nodes removed, I just wondered If any one else has suffered with very sensitive skin even to the touch, also is worst when it is cold, if so is there anything I could do or take to stop it

satori50

Thank goodness - women who understand this awful sensation I've been feeling since my skin saving, bilateral mastectomies with expanders just under three weeks ago. Similarly, the hypersensitivity is across my chest (most noticeably around the sternum), armpits, and the backs of both arms. The fabric of my clothing merely touching my skin makes me want to scream; not in pain but just because I get the severe creeps. The sensitivity is worse at night, so I have a very difficult time sleeping. And, although I am definitely not prone to them, I often feel like I'm having panic attacks when the hypersensitivity is bad. 

I am definitely going to try the desensitizing technique! Can anyone describe how to perform the technique in more detail? 

Has anyone tried acupuncture or topical cremes/gels? Any luck? I am very adverse to taking oral medications especially those that mess with brain chemistry. I am SO grateful for your sharing. I've found my people! 

rafitamia

You might want to try putting on raw honey in those areas.....mom had  a radical alternative therapy with cansima, (spelling) which made a gaping hole on her nipple area, brought out the cancer cells, and all we used was raw honey per the herbalist.  It had amazing results, closed very nice. Point being, it helped heal the open wound.  So give it a try, put some gauze over the areas where you put the honey, keep on day or night, can't hurt bur sure could help.  

mz_mes

After BS cleared me for exercise, my PT recommended light massage with arm raised above head from upper arm down and into the chest - use your open palm light pressure as you stroke your arm in a smooth motion down thru the armpit and inward over your chest.  It helps me.  Also she recommended doing massage with the towel for skin sensitivity.   PT urged me to massage the scars and the skin so it isn't so sensitive though the scars aren/t painful the underarm area is though.   PT helps with the underarm cording, core swelling and general shoulder tightness.  Have had to be careful with the right bra as skin is really sensitive and tends to get inflamed pretty easily.  Just finishing prednisone taper for annoying rash - came on 3 weeks post re-excision after a few vigorous runs. BS said it looked like allergic reaction to dermabond.  I think the sweating and rubbing of the jog bra didn't help either.   Though PCP said tropical creams wouldn't help much on the nerve pain and skin sensitivity I did try some neosporin which helped a little bit but then the pain broke through. Also used script for betamethasone for the rash and it cleared up in a few days.  Haven't used any pain medication for it -- as it is annoying and varies in degrees but not debilitating as I'm still doing the things I need/want to do despite the issues.   I know what you mean about wanting to scream from the clothes touching you though.  It is very irritating.