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Post mastectomy pain syndrome

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Posted 11/21/2009 7:23 PM (GMT 0)
sad  I was wondering if anyone has heard of this syndrome? I had a bilateral mastectomy in March 2008 with no reconstruction.  I've had constant pain ever since.  It feels like someone is reaching through my back with their fists pulling as hard as they can on my chest skin.  I had no idea it would be hurting this much.  I've tried acupuncture and massage with no relief.  The prosthetic bra is painful to wear too.  I guess I had no idea this was coming.  They did manage pain control the first week very well.  You are kind of in shock.  Boy is this pain depressing.  Not sure it will ever go away after twenty months.  The only thing that gives me moderate relief is white flower oil. 
Posted 11/22/2009 7:59 PM (GMT 0)
Chip's mom, so sorry to hear you are having this difficult pain. I've had it for 4 years, following mastectomy, chemo and radiation. I, too, have tried everything under the sun. I seem to be pretty stable right now on meds (small dose of methadone 2x daily, plus small dose elavil, plus small dose of lyrica). I see a palliative care specialist who takes my pain seriously. I also wear the Bellise compression bra, which helps me a lot but sounds like it wouldn't help you. Have also gotten some help from a low-level laser that is approved to treat lymphedema. I don't have telltale signs of lymphedema, but even a small amount of swelling can put pressure on your injured nerves, leading to major pain. It's believed that most cases of PMPS derive from injury to the brachial plexus nerve... An unfortunate subset of us have this happen during mastectomy, from what I understand. Please feel free to contact me by email and we can talk in detail. I'd be glad to help you in any way possible.
Posted 11/22/2009 10:23 PM (GMT 0)
Yes that would be very helpful if we could discuss these things via email.  I'm not sure how to respond directly to your message.  I'm new to this forum.  Tried clicking on the small envelope, but it didn't do anything.  Sounds like you've got some good pain management control.  I wear an ace bandage wrapped tightly around my chest at all times.  That seems to help the pain.  I'd like to hear about your prosthetic bra too.  It sounds like a compression one might help me as well. 
Posted 11/23/2009 12:00 AM (GMT 0)
Hi, ladies. I actually don't think that I've ever heard of PMPS. I've worked with kids dealing with brachial plexus nerve injuries, though, so I'm just curious if you've ever been given Neurontin to help relieve the pain. It's often used for BPI's. "Chips Mom," have you ever been referred to a pain management clinic? They are quite helpful with neuropathic pain. Sorry I can't be of more help!

Hugs to you both...
BEV
Posted 11/23/2009 5:40 PM (GMT 0)
Hi Chip's mom,


If you want to give me your phone number, I'd be happy to call you. (I have unlimited long distance on my phone, so won't cost me anything to call you.)

Bev, yes I tried nuerontin at increasingly high doses but it didn't work for me. That's why my pain doc switched me to Lyrica. More expensive, for sure, but seems to help me.

I definitely haven't found a magic bullet, though. I have a combination of things that helps keep my pain under control. In addition to the meds and Bellise compression bra, I really have to pace myself and try(!) to minimize my stress level. All of this has helped a lot -- I still have pain everyday but it's much, much improved and I am enjoying my life again.

I agree that a pain clinic is essential. There, you can get the proper pain meds that a primary care doc might be reluctant to give you. If you can't find a pain clinic, a palliative care doc could help. Palliative care used to be associated with dying patients, but no longer. A palliative care doc will help you get your pain under control so that you can live life to the fullest.

Hugs and hope,
Julie

Post Edited (icook) : 11/23/2009 3:40:56 PM (GMT-7)

Posted 11/23/2009 10:32 PM (GMT 0)
Julie, thanks for sharing. I've been on brca support boards for a long time, and I can't believe I've not heard of this. I've "googled" on it, and read that it is fairly common. We learn something new every day. Thanks for sharing your experience with it. If you don't want to leave your email address up after chips mom contacts you, you can edit your post and remove the email address by clicking on the pencil in the upper righthand corner of your post.

Hugs...
BEV
Posted 11/23/2009 10:58 PM (GMT 0)
idea  Now that Julie has mentioned this compression bra does anyone else out there use one for post mastectomy pain?  I didn't have reconstructive surgery but still wrap an ace around my chest daily as it seems to help the pain.  I actually can't go for long without being wrapped up.  Meaning I can't sleep at night without an ace on and can only go minutes out of the shower without putting it on.  I was wondering if the compression bra for a flatsie like me might be similar to the ace bandage that is a pain to wrap around every day. 
Posted 11/24/2009 1:19 AM (GMT 0)
Hi Chip's mom,

I had a mastectomy on one side only, and I'm a pretty small person. I wear the smallest size Bellise compression bra, which is 32 A-B. I believe this would fit a flatsie person just fine.
If you could get your doc to prescribe it for you, I think it would be worth a try. You definitely want to check with your insurance to make sure it's covered. It has to be fit properly by a knowledgeable person. I think the Belisse web site might show providers in your area. Also, there is a customer service person at Belisse who might help you find a fitter in your area.

I'm like you -- I can't go very long without the compression. I wear it all day long... I start to ache very badly if I don't put it back on soon after shower. I don't wear it for sleeping, though, and have no problem during the night.

Hang in there, I believe you will some strategies that work for you. Will talk to you soon.

Julie
Posted 11/24/2009 6:31 AM (GMT 0)
Bev I Googled it too, first I've ever heard if it too and came up with why.
seems this nerve is sometimes cut and causes residual pain.

Intercostobrachial nerve. Cutaneous branch of T1-2

More common with mastectomy than lumpectomy, but can happen with both.

I will be scheduled for second surgery early December, margin not clear, thanks to chips mom's post and Julie's reply I'm going to have a talk with my surgeon about chances this might happen.

I had a lumpectomy and breast lift in October, still haven't started rads or hormone therapy.

Jane
Posted 11/25/2009 6:51 AM (GMT 0)
Is there any chance that you have lymphedema? I don't have a lot of swelling, but I have it under both arms, chest and right arm. The most painful is under the arms. I have a compression bra I recently got, but it can be hot. It does help some with the pain though.
If you do by any chance have lymphedema, don't use ace bandages as they can cause more damage. They have special compression sleeves and tape for that.
Hope your pain lightens up. Yes is really can be depressing!

Gail
Posted 2/21/2010 9:17 PM (GMT 0)

 I have been suffering with nerve pain for 5 months now after bilateral mastectomies. Controlling slight lymphadema on one side with lymph drainage techniques.

Neurontin did help but the side effects were terrible. It kept me from being able to read or drive.(Same problems with Lyrica) Went off of it and the pain is becoming unbearable again. I also just recently stopped physical therapy thinking that it was making it worse. Had 30 PT appts with no nerve pain improvement other than good range of motion.

I am in the Chicago area and did not get any help from two physiotherapists I saw. So I am very interested in knowing if any other meds has helped anyone. My doctor did not want me to take the trycilic antidepressants because it causes weight gain. Can not believe that this has happened. Unable to work. Found the compression bra too irritating. Currently wearing women's HeatGear Compression Underarmour for a few hours day. Pain worsens by afternoon and continues to bed. Looking for any help or info since doctors are sympathetic but with no answers.

Posted 2/21/2010 11:34 PM (GMT 0)
As I said before, this is not something I've really heard about until chipsmom came to the board... and I've been on breast cancer message boards for about 10 years!  So I really don't know how much advice you are going to get here.  Wish I could help!  But maybe someone out there has some good input for you.

Hugs...

BEV

Posted 2/22/2010 3:09 PM (GMT 0)

Just found a great web sight that many women have replied to the problem. Breastcancer.org under topic of Post Mastectomy Pain Syndrome. Seems that up to 47% of women end up with the problem after mastectomy. Problems are not being addressed by doctors. Hopefully this will start the recognition. Doctors are just beginning to publish about PMPS.

Posted 2/27/2010 6:52 AM (GMT 0)

Wow! I have never heard of any of this and I have been on bc boards for the last 9 yrs...internet and locally. Thanks for the information.

One thing that helped me since I had my first surgery in 2001, was my manipulative therapist. Most of these drs are DO's but have a speciality in this area. Unfortunately, my dr decided that she had to follow her significant other to FL this past year. You might see if you can find someone in your area that is trained in manipulative therapy. It really did keep me 80% pain free.

I agree w/ the other ladies that suggested you find a pain mgt clinic. Hopefully, they can help you get the pain under control so that you can function. Pain sucks and all of the side effects that it causes are unreal.

Ladies, maybe each of us should copy these posts and websites and take them to our oncologists, surgeons and physicians. Make them aware of this problem.

Deb

Posted 2/25/2011 2:32 PM (GMT 0)
Ladies,

  Thank you all for those posts. I have been suffering from PMPS for a long time. My pallative care dr. was the 1 who told me what is was. Thank goodness for him keeping up to date on these things yeah   What really amazes me is that with such a high percentage of women suffering from this ( 47% ), I never  heard of it till the doc told me what it was called.  I am on a varity of meds, which include Lyrica & now methadone as well. I had to medically retire from my job. Up until now, I have felt all alone in this expierance which is probably 1 of the reasons it amazes me that 47% of women suffer from it. But you have all given me some info to help, as well as to just hear others out there and know I am not alone. 

Posted 2/26/2011 12:56 AM (GMT 0)
I've been active on breast cancer support boards for over 10 years, and chipsmom's post was the first I had ever heard of it. That 47% figure astounds me. Hope you are getting some relief through the treatment course your pc dr. has you on.

Hugs...
BEV
Posted 5/18/2011 8:52 PM (GMT 0)
ChicagoGal - you may want to look into "Rehabilitation Institute of Chicago"- amazing for ANY type of pain, improved my quality of life like you would not believe. Great physicians.
Posted 5/26/2011 8:30 AM (GMT 0)
Just to let you know, I had the same response when I contacted a breast cancer organisation here in Australia. Very few people recognise the problem. I have been to Pain Management Clinics, Pain specialists, Physiotherapists, Occupational therapists, chinese herbalists, Lymphatic drainage Massage therapists and taken Neurontin, [gabapentin], Efexor, methadone, morphine and Lyrica. So much for "informed consent" ! Nobody even mentioned this as a possibility 2 years ago before my bilateral mastectomy and rt axillary clearance. Some warning please for others in the future.. It is difficult being told "You shouldn't have pain!"
Posted 6/4/2011 1:16 AM (GMT 0)
hfcn... Sorry to hear that you have gone so long without relief. I'm one of those who had never heard of the syndrome. Please let us know if you find anything that works.

BEV
Posted 8/5/2011 8:20 PM (GMT 0)
I have just been diagnosed with PMPS...after 6 1/2 years of dibilitating pain and spasm. No, doctors do not know, for 6 1/2 I was told nothing showed on my scans, so therefore nothing is wrong. Drugs, that was their answer, drugs. It's a sad world. I am now to the point of no return. My PM&R Doc is going to do his best to help. He will not make any promises. He was my last hope.
Posted 8/6/2011 2:09 PM (GMT 0)
Hope that the pain management doctors can help. Sorry it took so long for doctors to diagnose. Let us know how it goes.

Hugs...
BEV
Posted 8/10/2011 9:16 PM (GMT 0)
Hi Ladies, Glad i found you but sorry we are all here. I wanted to know if any of you had ever gotten an MRI in search of the problem? I am scheduled for one tomorrow and do not want to get too excited waiting for the results if nothing can be scene with this either. confused i do not want to live like this cry
Posted 10/1/2011 3:46 AM (GMT 0)
Hi. I have had Post Breast Therapy Pain Syndrome (PBTPS) since my bilateral mastectomy in 2005. I've tried Neurontin, Lyrica, antidepressants, desensitization, Lidocaine patches, ice, acupuncture, electric stem TENS unit, physical therapy, massage, and injections Unfortunately none of the treatments I have tried have helped long term. I am hoping that one day a cure will be available. I am part of an online support group for PBTPS. There are 12 members so far. Here is the link if you are interested: http://www.facebook.com/groups/265320350156856/#!/groups/265320350156856/

Beacher - I had an MRI 6 months ago hoping to find answers but unfortunately it didn't show anything abnormal. My Lynphedema PT suspects that a neuroma may be the cause but the MRI didn't show one. Though my pain specialist Dr. said that PET scans are better for picking up neuromas. I had my annual PET/CT two months ago and that didn't show anything either.

I understand your frustration and really wish I didn't have to live in constant pain either. It truly is miserable. For now I use distraction to get through the pain.
Posted 10/26/2011 1:23 PM (GMT 0)
On this web site http://www.orbiclinic.com/news/# I found very interesting article about breast cancer.
Posted 11/12/2011 5:03 AM (GMT 0)
I read a great article about Post Mastectomy Pain Syndrome on this site:
(link removed by moderator)
It discusses the reasons the pain persists such as there being a feedback loop between injured sensory nerves and the emotional pain centers of the brain which results in interpreting pain signals as much worse than they really are.

It discusses innovative treatment interventions.

Post Edited By Moderator (barkyboys) : 11/12/2011 8:44:38 AM (GMT-7)

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