Burning sensations after mastectomy

Options


Has anyone found anything that helps this? I just started getting burning pain on day 10. It comes and goes, but is getting worse. I still have my drains in. Could that be making it worse? I had no pain or sensations right after surgery. Now my chest feels like it is contracting and hurts.


My doctor said it is nerve pain. Has anyone tried R Alpha Lipoic Acid, B vitamins, Gabapentin or anything else?


Thanks so much in advance for any help or suggestions!


Georgie

«1

Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2013


    Georgie, I always warn people that around day 10 (just like you said!!!) your nerves start to regenerate and you'll get zaps and zingers that will drive you nuts!! It's a very good sign, but very annoying!!!! I found this little "massage" toy in Walmart that ran on batteries. It has 3 little feet that "hum" and sort of vibrate. I would run it along the irritated area and it would break up the spasm and distract me from the annoyance. It's not a heavy duty back massager, but looks kind of like a 3-legged bug and was cute. Buy a lot of batteries!! Surely there is something still available. I also kept the area lightly creamed up with Glaxo cream which I understand you don't have in the USA. Talk to your pharmacist and see what you are allowed to gently massage in the area of your scar. My skin stayed supple and my scar looks wonderful!


    Don't be afraid to gently touch your scar line to break up the annoying burning. Sometimes just a distraction of another feeling will be enough. Watch what you wear against the area as well, as that can irritate sensation for a couple of months. It does go away. Good luck, sweetie! Let us know how you're doing.

  • georgie1112
    georgie1112 Member Posts: 282
    edited October 2013


    barbe,


    Thanks so much!!! I've been worried that the burning would be my "new norm". That you believe it will go away is the best news! I did find last night that touching the scar lightly seemed to help. For now, it is better. I will look for a little massage tool. I see my doctor and naturopath Monday, so will ask what I can use on my scar. Hope the naturopath has some suggestions. Really appreciate you getting back to me and happy to hear it is a normal sign of healing.


    Best,


    georgie

  • crystalphm
    crystalphm Member Posts: 1,138
    edited October 2013


    Yes, this happens...It felt like a bad sunburn to me, and the muscles contracted (spasmed) and it was very uncomfortable. One thing I was told to do was gently rest my hand on the incision and it seemed to reassure my brain all was well. Some of what you are feeling is phantom pains (missing the breast) and your hand on the incision will correct your brain into recognizing it is gone...to shut down the pain.


    At 10 days, I was not allowed to put anything on the scars, so you have to be sure about lotions (ask your doctor)...I think I began using lotions when the scars were completely healed.


    And yes, the drain makes everything worse, I had my one side drain for 3 weeks, and yes, it just hurts.


    hang in there!

  • georgie1112
    georgie1112 Member Posts: 282
    edited October 2013


    Thanks, crystalphm! I tried resting my hand on my chest and it IS comforting. First of all, I am not "dealing" with the loss of my breasts by sort of pretending nothing is different??? Makes no sense. But putting my hand gently on my chest helps me be present and begin accepting what is. It also knocks down the pain.


    I asked my doctor about cream and she said not to use any cream... But I think the naturopath may have some suggestions. Maybe calendula succus which is for healing. Will ask the doctor though. My oncologist trusts this naturopath, but not sure how the surgeon will react.


    Sorry, am rambling. Mostly wanted to thank you as the sensations were flaring up again, but they lessened with gentle touch. My chest feels like it is contracting and squeezing. It is very hard and tight. Trying to breathe deeply and do my stretches gently.


    So appreciate the help, ladies.


    georgie

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2013


    georgie, I too, had the burning sensation. It was like sunburn or like I had been rubbed by sandpaper. I found just holding the area with my flat hand could make the feeling subside. I was allowed to massage with aromatherapy oils in a base of Wheatgerm, Macadamia, and Sweet Almond early on and I really think it helped a lot. It certainly kept the skin supple and helped stop adhesions. I also did the stretching exercises religiously for many months.


    I had lots of strange sensations after my Mx, one that I call the "Claw" which felt just like there was a sharp claw holding my chest and underarm. It usually kicked in when I was over tired, but happens very rarely now.


    I'm about 10 months out now from my UMX and can say that for me, most of those unusual or strange sensations are gone now. I am still numb and don't expect much to change there, but the burning and zinging are gone.


    I wish you all the best. Take it easy, it is very early days for you. I hope it all subsides soon for you.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2013


    Georgie, the point isn`t to `pretend` nothing is different, but to make your brain realize something IS different. I knew what crystal meant when she posted...soldiers in war get phantom pain in legs that have been amputated. After all, your brain doesn`t realize the leg is gone!! In this case, breasts. I found using a camisole that I could sense on my skin felt good too. Not too lose, yet not too tight. It`s a fine balance...but very do-able.

  • georgie1112
    georgie1112 Member Posts: 282
    edited October 2013


    Ariom,


    My pain got crazy bad yesterday, but turns out I have an infection. Am getting a massage tomorrow and have an appointment for physical therapy. I tried to light 12 candles and it sent me into horrible pain. I feel like an elephant is sitting on my chest and yes, something intense and constricting. I'm so glad yours went away!!! And yes, I am trying to remember it is still early. But I had anticipated being fine in 2 weeks so will need to garner some patience!


    Hi Barbie,


    I think what is happening is not phantom pain. I saw the medical assistant today and have an infection which is causing severe pain. It had gotten much worse than the burning sensation I posted about. Right now I am finding wearing any camisole is uncomfortable. I have 3 but they all hurt. I am wearing a soft t shirt. Went to the pharmacy to pick up new meds and carried a grocery bag in front of my flat chest.


    People need to deal with things in their own time and I am doing the best I can. Denial, pretending is where I am. I can't "make" myself be somewhere if I am not there. I will have to figure it out as I go along. What that means, I don't know.


    Georgie

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2013


    So sorry you are having more pain, but an infection will do that:) I hope it heals quickly.


    I too, got a bit of an infection in my incision and had to take antibiotics. It is a bit of a setback for you, but should pass fairly quickly.


    This is a huge adjustment, and a very brutal surgery. Try to take it a day at a time and let your body heal at its own pace. It won't be too long and you'll be feeling more in tune with it all. We are all different, but probably all need to learn a little patience:) Take care!

  • georgie1112
    georgie1112 Member Posts: 282
    edited October 2013


    Ariom,


    Thanks so much for the reminders. It is a brutal surgery. I never thought of it like that. Will focus on patience and breathing. Appreciate the support!


    Georgie

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2013


    You're so welcome georgie, I think we all expect too much of ourselves, and aren't used to really taking care of ourselves, over others. This is a time to really focus on your self.


    This infection will heal, and the sensitivity will pass. You will get into the "New Normal", it's all just time and acceptance. Take care of yourself, and try to rest, and eat well for healing. Let us know how you're getting on.


    (((((HUGS)))))

  • georgie1112
    georgie1112 Member Posts: 282
    edited October 2013


    Thank you, Ariom! Appreciate the positive message. Just what I needed to hear. Got a massage today and it was SO helpful in relieving the pain in my back, but opened up my shoulders. I actually looked at myself and didn't cringe for the first time. So the massage helped me just be and integrated my body. my chest is burning hot though so will call the doctor's office again tomorrow.


    Georgie

  • crystalphm
    crystalphm Member Posts: 1,138
    edited October 2013


    Georgie, Yes, you have to be on top of this infection and be on the right antibiotic. Your pain is completely different from what we are talking about which would be "normal" pain...and you are certainly feeling some normal pain too. This really is a traumatic surgery, and while we may thing we are cool with it, there is a lot to wrap your head around.


    For now, be comfortable, this is your healing time. My first mastectomy I rushed with everything, to wear a cami, to wear a foob...to get into my clothing...the second one (unfortunately) I rested. And I did things that made ME happy, and I rested.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2013


    Georgie, it wasn't me who suggested phantom pain, I just described it. I didn't have phantom pain either. I did have a lot of trouble with hugs!! People wanted to hug me, but boy it hurt!!! I wore a zip up hoodie for weeks with nothing underneath to touch my skin. An infection makes the equation so much harder.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited November 2013


    I got that terrible burning, itchy feeling, painful areas (whole chest, armpits, sides of chest and going around the back a few inches deep inward, and upper back of arms).


    My surgeon put me on Gabapentin about a month after the surgery. This January will be 3 years since my BMX with node removal and I STILL have terrible pains that I can't function normally. I have other meds I take and get IV Lidociane infusions about 8-9 weeks.


    Some people get better, some get a little better, and some have pain problems for years.


    I hope you get better!!!

  • georgie1112
    georgie1112 Member Posts: 282
    edited November 2013


    Oh Cinnamonsmiles, I am so sorry you are still struggling with this. The burning might be getting a little better for me. But mostly I can't wear a cami as I am so sore. But I have other issue like an infection and fluid build up.


    Have you tried acupuncture or any natural remedies? I understand B vitamins might help with nerve pain.


    Georgie

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2013


    Cinnamon, that is just NOT fair!! You have done all you could and then to have the nerve pain is insult to injury!! Have you tried Neurontin(?) - it's just a different version of Gabby. Maybe the slight change would make a difference?? Good luck, sweetie, I wish you only the best....

  • gtgirl
    gtgirl Member Posts: 129
    edited November 2013


    I am day 7 post op (not counting surgery day) and I have had many sensations. The one that started last evening was strange and hard to explain. My binder never bothered me and since this new sensation started, I don't want things touching me. I find myself moving positions more. It comes and goes.

  • BikerLee
    BikerLee Member Posts: 355
    edited November 2013


    so, i have weird sensations as well, but i think much less severe than what folks here are describing. i did have a period of time during which i NEEDED something like a little bralet against the scars so that i wouldn't have fabric moving over them…


    anyway - fast forward quite a lot… and what i've found to be VERY EFFECTIVE is embrocation with capsaicin (hot pepper oil). takes a few days to get used to… but once you do, it's amazing. it has made everything better, and i also feel like my scars are flattening up. NOTE - take care to not get this stuff in your eyes or on other sensitive bits…


    embrocation - what is it? it's belgian knee warmers - we use this stuff so that we can race bare legged when it's cold. i won some locally produced embro in a race, and i've completely fallen in love with it. i had used embro in the past, but nothing like this stuff. it's by a minneapolis company called "donkey label" and the embro i like the best is the medium heat embro. it's essentially capsaicin cream like what you can find at a drug store, but the ingredients are organic and much much higher quality.


    you wouldn't want to put this stuff on until your scars are healed over… i think waiting until you're cleared to swim is probably about the right timing… but i've got to tell you - the weird pains that i used to have under my arm on the sentinel node biopsy side??? so much less… i don't think i realized how much weird pain i had before i started using this stuff.


    so, there are my two cents… there are a few companies that make embro, but i really like the product from donkey label.


    good luck.


    weird pain sucks.

  • dechi
    dechi Member Posts: 173
    edited November 2013


    I had pain in the back of my arm on the mastectomy/lumpectomy/AND side that felt literally like somebody pouring hot lava down the back of my arm. It was terrible. Now almost 2 years later I still get a very occasional hot knife-like pain back there but it is soooo much better. Time does heal!

  • crystalphm
    crystalphm Member Posts: 1,138
    edited November 2013


    Dechi, I forgot about that hot feeling down the back of my arm...I would check with a mirror 1000 times because I was positive I was burning up...but it looked normal!


    You are right, time does heal.

  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2013


    Hello Georgie and ladies


    My onc told me after my mastectomy that I might getting shooting pains afterwards but not to worry as it was just the nerves starting to regenerate!


    I didn't worry and it did calm down.


    Take care of yourselves


    Alice

  • georgie1112
    georgie1112 Member Posts: 282
    edited November 2013


    My burning sensations started about ten days after my BMX surgery. I also had tingling and intense stabbing pain. Then discovered I had an infection:(((


    PT told me the pain was nerves trying to alert me to an injury. She recommended light massage and it was VERY helpful. Also helpful in accepting my new body.


    Thankfully my burning sensations are gone. I did have to ditch all camis when the pain began and just wore a loose soft Tshirt. Finally found a soft cami from ABC that did not have a band or Velcro. Funny how the Velcro and any seams really hurt! Puffs were on the outside of ABC cami thankfully, so no seams to irritate. That was a lifesaver!


    Also when the PT recommended a compression shirt, I bought an XS stretch tank top as I was swollen. Sounds like the opposite of what might help. This really helped the pain. The light compression was very soothing for me. Maybe this sent a message to my nerves. Whatever it was, I had MUCH less pain with the compression. As soon as I put it on it felt right.


    Hope that helps. I was pretty distressed to be getting new issues after the surgery. But it helped me to know others had the same thing. Still healing. Still having issues but I am feeling better.


    Hugs, Georgie

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2013


    It seems to be a good thing to "de-sensitize" the area whether by touch, heat or a snug garment. I couldn't imagine wearing a bra!! I used light massage when I could and a firmer massage when I just had to zap those zingers!! Took a while before I could have anyone hug me. The loose garment feel on my skin actually feels sexy!!! Crazy I know, but my mind says "no bra!! oooooo" and my head doesn't interrupt and say "no breasts! ooooo right!!" So I still walk like I've got the two best out there...hehhehhe

  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2013


    Hi Georgie


    Crumbs! An infection! I'm glad it got sorted out.


    Very intersting post.


    Best wishes


    Alice

  • Ariom
    Ariom Member Posts: 6,197
    edited November 2013


    Hi Barbe! I agree with the desensitize massage!


    You crack me up with the description of the "no bra ooooh!" LOL That's fantastic!


    Another member who had surgery at the same time as me, and I were talking about how we can look at where the nipple used to be, and still get the sensation of a nipple being there. I hope that's not TMI! It just shows what the mind can do!


    I can still do it, so it hasn't disappeared with all the other weird sensations!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2013


    Good point Ariom! I often feel like my nipples have almost responded to cold, almost but not quite.... I even had the nerve (pun intended, but true story!) of asking my surgeon WHERE did the nerve end up when he cut it??? I mean, seriously!! That amazing nerve got cut and shrunk back to....where??? He told me to have fun looking!!

  • Ariom
    Ariom Member Posts: 6,197
    edited November 2013


    Hi barbe, I hadn't thought about where the actual nerve had gone! Interesting answer from the surgeon LOL


    My surgeon told me that the zingers I was having were the nerves regenerating, and that some of them actually do find each other. I found that amazing.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited November 2013


    Curious, I feel my "nipples" too! It is the craziest feeling and doesn't happen all the time, just sometimes, so somewhere I have a nipple nerve trying to find it's path :-)

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2013


    I think it's just a "memory" feeling - like a phantom pain on a limb that has been amputated. We had so many years of our nipples reacting to cold and other things that the rest of us expects that sensation. If we lost them young, we wouldn't even know the sensation to feel.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    Barbe, I agree with you.... nipple sensation after a MX is a phantom feeling. We tend to think about phantom feelings as only being painful (i.e. the term "phantom pain") but phantom feelings can be pleasurable too. I used to 'feel' my nipple at lot in the first few years after my MX, but now that I'm 8 years out, it's pretty rare that it happens.


    So often on these boards we'll see posts where someone who is just a short time past her surgery talk about how she has wonderful breast and nipple sensation. If it's just a discussion, I won't say anything. But if she is offering advice to someone about what to expect with a MX, I try to gently point out that those sensations most likely are phantom sensations that will ease off over time, as our minds finally come to realize that the breast and nipple are gone.

Categories