Post mastectomy pain syndrome

 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. 

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. 

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)

 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. 

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

 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.

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.

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   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. 

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.

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

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

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.

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)