Burning Pain??

Gypsy_Dr34m3r

Hi everyone,
I'm wondering if any of you suffered from a severe 'burning' pain after mastectomy and placement of tissue expanders?
I had my op Dec 31st 2013, and was doing pretty good until my 2nd fill, then that same night I started with this.
It's not constant, but every now and then it hits me. I can be moving around like crazy one minute with no problems, then just move slightly to the left and BAM!! Absolute agony.
To the point that even Percocet doesn't ease it. 
I'm thinking it's the tissue expanders, but as it only occurs on the side I had the lymph node removed I'm not 100% sure of that.
I did ask my PS's PA at my last visit, and she said it will go away as my body heals.
Not that I don't believe her, she's a great doc, but I would rather hear it from someone who's experienced it first hand.

bluepearl

It's nerve pain. It DOES take time to heal. I had it the first go due to node removal and it took two years before it became almost gone. It only kicks up when I do too much with that arm. Traditional pain killers don't work on nerve pain but I found Ativan helped..it relaxes muscles...so perhaps Tylenol with muscle relaxants will work. There are also meds that target nerve pain directly. I never had implants, so don't know too much about that except some gals have huge pain with them.

I decided against it because after all this time, I do not want to wake the sleeping lions.

Gypsy_Dr34m3r

Thanks for the reply Bluepearl 
I knew someone here would relate to what I was experiencing. I've been pretty lucky pain wise this far, and even with the expanders. But figured there had to be more to it as it was only the one side.
I'll definitely give the Tylenol a try.

bren3

I had this burning pain as well but different from the other poster. I only had it with the TE pushing or pinching in certain parts. A burning pain is exactly how I described it to people and it would wake me up at night. It got worse the more I was filled but was immediately gone at exchange. I had lymph nodes removed as well but the pain was actually on my other side where I had no nodes removed. So in my case I am positive it was from the TE.

Gypsy_Dr34m3r

Hi Bren,
This pain only started after my 2nd fill (3rd if you count the one they did during surgery) The first one (100cc) felt tight in the same area, and pulled, but no real pain, the 2nd (another 100cc) had the same tight feeling but within a few hours this pain started. And yes, burning is the only way to describe it.
The PA didn't say what it could be, just that it will go away. 
I guess when I have the implants, I will know for definite, one way or another.
I've heard after the last fill, the expanders stay in place for a few more months, is that right? I can't wait for these things to be gone already 

cinnamonsmiles

I have had extreme and intense nerve damage pain since my BMX with node removal.

The standard meds for nerve damage pain are Neurontin (the generic is Gabapentin) or Lyrica. Amitriptyline is an anti-depressant that can help with pain in some and help you sleep at night if pain keeps you awake.

My pain is so severe I am still on all my medications even three years later.

I also get Lidocaine treatments that I have found extremely effective in decreasing nerve damage pain. About every 6-9 weeks, I go to the Pain Procedures Center and I get an IV bag of Lidocaine. I can tell when it starts to wear off because the pain comes back.

Last summer, I had to have a Thoracotomy and the surgeon had to cut directly into tissues that already had nerve damage pain and it was awful extreme pain. I still have issues from the thoracotomy and new additional pain.

Talk to your doctor. Write down all your pain symptoms (burning, skin hypersensitivity, numbness,sharp,stinging, etc)  and where you feel each pain. Hopefully your doctor can find something that works for your pain. Be aware, though, Gabapentin and Lyrica do come with side effects that some can tolerate and some can't, but you won't know how they effect you unless you try them.

From a lot of the people posting, I have seen a trend that most (not saying all) plastic surgeons don't understand nerve damage pain post-surgery. You may want to talk to your breast surgeon or get a referral to a pain clinic (and hope you get a good doctor).

I am sorry to hear of your pain and totally understand.

P.S. Please remember that since you had lymph nodes removed, you are at risk for developing lymphedema. It is recommended that the effected limbs (including hands) have no needle pokes or blood pressures taken on the side(s) where lymph nodes were removed.This applies to sentinel nodes as well.

Gypsy_Dr34m3r

Hi Cinnamon,
After reading all you are going through, I suddenly feel so wimpy.
I cannot begin to imagine having this pain constantly. I'm lucky that it comes and goes, and is gone more often that not.
I think for that reason, some long term meds aren't a good choice for me, I don't do well with meds..period!
You mention lidocaine treatments, I was reading through a few posts on the forum after posting here, and someone mentioned lidocaine cream. I think I'm going to ask my plastic surgeon about that.
I think along with a good strength tylenol I should be good (fingers crossed).
Thanks for the heads up about the 'lymphedema', I hadn't heard of that, and no one so far has mentioned it to me.

Blessings2011

I had horrific burning pain immediately after my BMX/TEs which lasted for nearly a month. It felt like a searing, red-hot bear trap around my chest.

Two things changed that: I started taking my pain meds around the clock, as prescribed, instead of trying to wean off them too soon. I definitely needed them but was trying to not be a wimp.

The second thing was the pain went away as I started to get fills. That told me that the TEs had been irritating a nerve, and that with expansion, they moved away from the sensitive area.

As you can tell already, nerve pain can be from so many sources. If your PS isn't "getting it", perhaps it's time to see a different doc... maybe your BS? Maybe a pain specialist? 

Just remember, the TEs are only temporary! Hope you find relief soon....

AZ85048

Gypsy_Dr34m3r - I think that I might be the one you're talking about that posted about lidocaine cream over in another thread.  Remember that it's a topical cream, so all it does is numb the surface of the skin for a few hours.  It shouldn't be used all the time (I only used it when I was leaving my house which I did once or twice a week) and overuse can have serious health consequences so you need to use it sparingly.  "Your body may absorb more of this medication if you use too much, if you apply it over large skin areas, or if you apply heat, bandages, or plastic wrap to treated skin areas. Skin that is cut or irritated may also absorb more topical medication than healthy skin."  My skin hypersensitivity was constant and lasted about a month or a little more and then one day I woke up and it was just gone.  Weird I know, but it's the truth.  So I don't know if the cream will help you, but it certainly was a Godsend to me... 

Gypsy_Dr34m3r

Blessings, 
I weaned off my meds pretty quickly too, then ended up taking them again for this 'new' pain. 
Don't get me wrong, my PS and his assistant are awesome, I couldn't wish for better (and don't think I could find better) I just prefer to hear from people who have 'been there, done that', than someone who's never experienced the pain.
I'm crossing my fingers it is the TE's causing this, at least then as soon as they are out, it's gone, although (touch wood) I haven't had a twinge for a couple of days now. 

AZ,
I think it was your post I read.
Thanks for the info on the cream, luckily I'm not in constant pain, but when it does hit, it makes for a long sleepless night. But maybe my PS would prefer I try something different.
It is nice to know what options are available though. 

GoWithTheFlow

I found my lump from pain just in front of my armpit.  Once I started chemo, it went away, but came back once the placed a clip in to mark the nodes.  It never went away again, even after surgery.  After months of this, I asked for a referral to a pain clinic that deals with post surgery and post cancer pain.  

They changed the nuerontin which made me sleepy so I only took it once a day at night.  They added another anti-depressant that works on nerve pain, put me back on vicodin, and the best thing they did was give me a trigger shot in the painful area.  

What I was told was the muscles were in a knot there, pulling on the nerves and causing the constant burning pain.  I've only gone in once for a shot, a month ago, and the burning is still gone.  The needle into the knotted muscles helps to break the knot up, and they added a muscle relaxer to my daily meds to prevent it from happening again.

Gypsy_Dr34m3r

GoWithTheFlow, I hope they have it sorted for you now, it's not something that is easily live with able
Luckily my pain has pretty much gone now, just a twinge now and then, but nothing at all like it used to be.
I had my last fill a couple of weeks ago, so I'm definitely leading to it being just the expanders.
Thank you all for your input on this, and thanks for the tips
You gals are great.
Best of luck to you all

simplelife2

Hi ladies. Your posts have been very helpful, thank you for sharing. I have been battling the burning pain since week 3, and its now been 11 weeks. It comes and goes, but seems to really fire up with increased activity  . Has anyone else noticed that? I've been using Percocet when I can't stand it any more. I've been rubbing oil on my chest to try to desensitize the area. I'm hoping it's the TEs and I will be done with it after my exchange. It gets pretty intense at times. My PS felt it was more related to the BMX than the TEs. Happy to hear it does get better. 

AZ85048

simplelife2 - See if your PS will give you a prescription for the lidocaine cream - pain pills never really helped my pain at all.  But that topical cream did the trick!  I think mine lasted for about six weeks, so maybe soon it will just go away on its own!  Either way, good luck to you!

Gypsy_Dr34m3r

Hi Simplelife2,

So sorry to hear you are suffering that awful pain.
Mine too used to get worse with increased activity, but did finally decrease.
Although I found that because activity would cause it to flare up, I seemed to start favoring my left side and eventually ended up with limited movement of my left arm.

As it turned out (for me) it was the tissue expanders. I had the exchange surgery last Friday and not even a twinge of that now. 
That said, I have a 'new' discomfort, from this surgery, but definitely different.

Your PS is probably right, did you have lymph nodes removed? I found the burning pain was only on the side I had the node removed.
Maybe it's a bit of both, the Mastectomy and TE's.
Hopefully you'll soon be rid of it, like I was.
Best of luck!

cinnamonsmiles

I saw a pain psychologist in 2011 and 2012 for my post mastectomy pain syndrome.

One very important thing I learned that nearly all people with pain do and have is a type of cycle. On days we feel good, we over do it. Then we have day(s) of inactivity. And the cycle is repeated.

I had to learn to break the cycle. I still have severe pain from the nerves being nicked during my BMX and no de removal on 1/11/11.

I needed to pay very close attention to what I did and how it made me feel. I had to modify my daily activities so as not over due it and cause more pain.

For example: I can't sweep and mop the kitchen floor and vacuum on the same day. I can't carry the laundry basket to the clothesline. I need to use my garden wagon. If I want to do any weeding, I need to take it easy on housework, etc etc.

Gypsy_Dr34m3r

Hi Cinnamonsmiles,

What you said is absolutely true. I find myself 'thinking' I can do something, with no problems, only to realize later that I made a huge mistake.
At the moment, I'm on lifting restrictions, (no more than 5lbs) and I still find myself forgetting, and lifting my young grandson.
Hopefully I will learn, before I cause myself major problems.

CakeLady21

I, too, have been dealing with a burning pain since 2 weeks after my mastectomy and lymph node removal. The whole backside of my arm, part of that shoulder blade, my armpit, and across the top part of my chest. The only way I can describe it is feeling as if I've been burned with an iron, then rubbed raw with a Brillo pad. It's constant, and even air hurts it. Everything I've read points to nerve damage from the node removal. My gyno and PS told me it was as well, and said I needed to contact my surgeon. He said he's never had anyone complain about it and that if I was still troubled with it in 6 months, he'd refer me to a pain clinic.

I own a bakery/cafe and use my arms constantly...even the day of an expansion of 120. It's been hard with that pain...I just pray it goes away soon. It's been 9 weeks since it started. Keeping you all in my prayers, too!! 

Rjean

Hello everyone.  This is my first time on the site.  I have been having a burning pain in my breast on the side where the lymph node was removed.  I had a bilateral mastectomy on Feb.14th this year. I just had the expanders removed a week ago and the implants inserted.  I have been feeling a slight burning for a couple of months but hadn't mentioned to my doctor.  I called my PS's office yesterday and was told it was the nerves healing. The pain many of you are describing seems to be much worse than what I am experiencing. I don't feel it on the outside or when I touch my skin, I still have some numbness. For me it is a burning that lasts a second or two and is deep inside, but it seems to be happening more often now. Has anyone had this type of issue?

qutypy

I am 5 years, post surgery. I have had constant burning under my reconstructed breasts from day 1. I'm not able to wear an underwire bra, which would help with shaping but have to wear soft bras. By the end of the day, the burning sensation dries me crazy. My PS tells me its a common complaint and may or may not disappear. I have to say, with all the surgery Ive been through, this is the worst fall out of all of them.

CammieK

I had a bilateral mastectomy in June 2014 after 3 unsuccessful lumpectomys. I went direct to implant and didn't have to do tissue expanders but the pain and spasms are making me crazy!  I have just started having lightning bolts shoot through with no warning! Anyone else? So tired of being told it is normal!

AZ85048

Hi, CammieK - The 'lightning bolts' are the nerves that were cut during your BMX trying to regenerate themselves.  They are fondly known as nerve zaps. They're more frequent and intense at the beginning, but over a year later, I still get one every once in a while.  And if you're having the 'sandpaper feeling' across your chest, then that's almost always nerve pain.  And unless you can get you oncologist or PCP to prescribe Gabapentin (Neurontin) for it, a regular pain pill won't touch it.  Not everyone gets the sandpaper effect but those of us who did, found out fast that many doctors are often unfamiliar with this phenomenon.   I hope that helps you a little..  Good luck!  

Ariom

I didn't reconstruct, but I did have the zaps and the major sandpaper, sunburn feeling. I found holding my hand flat on top of it, would settle it down, as did gentle massage with essential oils in carrier oil. There were times when I couldn't bear to have any fabric touching my skin.  My Surgeon explained that the cut nerves are searching for their other half and some actually do, find each other!

Greermomma

I had bilateral mastectomy on April 21,2016. I have started to experience that burning bad sunburn feeling. How long does it last, I'm so fearful something is wrong!! PLEASE ADVIS

MFalabella

Ask your doc for Gabapentin, it is for nerve pain. GreerMomma it is normal, nerves were cut so some of us have the burning feeling. the gabapentin stopped mine completely

I hope you are better by now

xoxoMichelle

Gypsy_Dr34m3r

For me, it ended up being the expanders. As soon as I had the implants put in, the pain went away.