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Post Mastectomy Pain Syndrome (PMPS)

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  • nash
    nash Member Posts: 146
    edited October 2017
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    I'm so glad you both mentioned nerve flossing, b/c I'd never heard of it. And I've been through 13 rehab people over 2 1/2 years! I was out of things to try, but now I will try nerve flossing. Thank you!

  • LoriWNY
    LoriWNY Member Posts: 178
    edited October 2017
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    What is nerve flossing?

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited October 2017
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    It's a way to relieve some nerve pain. Here's a link with details.

    https://www.epainassist.com/manual-therapy/physica...


  • Jackiebro
    Jackiebro Member Posts: 28
    edited October 2017
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    Thank u Serenity:) I watched some YouTube’s too. Great link!


  • Stansgal
    Stansgal Member Posts: 1
    edited March 2018
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    I just found this forum after searching to see what other women suffering from PMPS are saying.

    I had a left side mastectomy in September 2017. I am completing my chemotherapy regimen this week but I am experiencing a burning pain in my left arm pit with swelling and across the incision site is so incredibly sensitive I am unable to wear my prosthetic breast.

    My surgeon assigned me a physical therapist who specializes in lymphodema but I am only able to see her once every two weeks. She says I have a mild case and will be wearing a compression sleeve. I am also doing exercises and self massage with little to no relief.

    My surgeon mentioned a drug called Gababetin ( Neurotin, Gralise ). I have asked to now be assigned this regimen.

    I would love to hear that if in the last few years has anyone found any other therapeutic modalities that have helped.

    Thank you!


  • bluepearl
    bluepearl Member Posts: 133
    edited March 2018
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    I remember that burning pain in my arm and thought I could never live with it. I did for 1.5 years and then it went away. I cried and cried over it until I read about a guy who had nerve pain from a lung cancer operation that took 3 years to get rid of. That gave me hope. I hate to mention this, but ativan helped with the pain too.

  • moderators
    moderators Posts: 8,067
    edited March 2018
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    Hi Stansgal-

    Welcome to BCO! We're sorry you're still experiencing pain from your mastectomy. You may find our lympedema forum helpful, lots of great tips and advice from other members who've dealt with or are currently managing lymphedema: https://community.breastcancer.org/forum/64

    Please let us know if we can be of any assistance!

    The Mods

  • ginger48
    ginger48 Member Posts: 1,437
    edited March 2018
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    Hi. Gabapentin has helped me. I also found someone to do some manual lymph drainage and I wore a sleeve for a while. I am much better now and only wear the sleeve for flying. Hope yours feel better soon.

  • AliceKo
    AliceKo Member Posts: 44
    edited March 2018
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    Serenity, thank you! That flossing stuff is good!

  • mmbNaplesFL
    mmbNaplesFL Member Posts: 8
    edited April 2018
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    Has anyone with PMPS seen any link between FemarA and the pain syndrome?

    I began FemarA last year, Oct 11. Two months later, mid December, I developed PMPS and started seeing a Pain Dr. Got two cervical and one thoracic nerve block, which have pretty much worn off. I was due to see Dr this month but am in Denver until mid May. My pain has gotten pretty bad again and pain meds don't help.

    I inadvertently forgot to take my FemarA and supplements last night and today I feel SO MUCH better. That is the only time I have missed a dose.

    Could the nerve craziness and resultant pain be tied somehow to the FemarA? I intend to not take it again tonight and see if I have further improvement. I don't intend to stay off the FemarA for good, but just hoping that if the syndrome can calm down maybe I can get rid of it.

    Is this just wishful thinking? Is there another drug that does what FemarA does that I may be able to switch to? I am under the impression that FemarA is the best, so this will be a major problem for me. My pain has been so bad it has been ruining my life. Don't want to do anything except be still so I don't hurt so much. I do exercise, do yoga, stretches, warm baths that all help for a while, but the debilitating pain returns. I only long for nighttime so I can get in bed and feel better . This is no way to live.

    Hope to hear if anyone else has any experience with these issues.

    THX so much, Michele

  • Curious60
    Curious60 Member Posts: 3
    edited May 2018
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    I have been reading all of your various posts regarding PMPS. I am going on 5 weeks post bilat mastectomies. Boy I never would have imagined all of the same issues i have been experiencing. And YES I agree, the pre-op preparatory reading was bad enough - and NO it did not include the nightmarish PMPS.

    I was just coming out here to see if I could find assistance in how to manage it. I have asked my PS whose care I am still under..... have a quarter sized area still trying to heal... I complain of the pain, the stinging shooting, burning pains, and the annoying itching (all more on one side than the other), and all i get is the repeated "yes you are still restricted from duties, reaching.....", and the pain is normal.

    An occasional cold water bottle feels great(of course not too cold cause they don't want you to over do it with the cold or heat.)

    I was at the vitamin store this week and noticed "NerveFix", a homeopathic treatment for nerve pain.... really trying not to get into any new meds like neurontin... Just started the NerveFix... dont know if its too soon to tell yet.

    I have been wondering how long this is supposed to persist.... guess i got my answer in reading a lot of your testimonials.

  • minustwo
    minustwo Member Posts: 13,116
    edited May 2018
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    Curious - I would not be starting any supplements without getting clearance from both your surgeon and your oncologist, or your PCP is you don't have an oncologist involved. It's way too soon to be diagnosing & treating yourself from the drugstore since you still have an open wound. If you have tissue expanders, that adds another dimension. If you really believe you have a nerve issue - go see a good neurologist. Mabye investigate some of the Lymphadema threads

  • Curious60
    Curious60 Member Posts: 3
    edited May 2018
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    Dear Minus Two, totally appreciate the feedback. I have a great Onc, great Surgeon. Will stand down on "self treating"..... would not want to interfere with natural healing process. The burning pain is ruling my life & totally adds to the depression of all "this"......

    I will be reaching out to my PS office via email to inquire on the continued pain & suggested ways to deal with it until I see him again.

    Again, thanks for the feedback. Totally expected to get my hands slapped on self treating.... any & all feedback is appreciated.

  • minustwo
    minustwo Member Posts: 13,116
    edited May 2018
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    Curious - hope you MO and PS can give you something for the pain and the depression. I don't like drugs, but we don't need to put up with that stuff. Do check back & let us know.

  • bella2013
    bella2013 Member Posts: 370
    edited May 2018
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    Curious, I didn’t get relief from BMX pain until 5 weeks post op. The chronic pain just lifted. Give yourself a little more time...you might turn the corner very soon

  • AliceKo
    AliceKo Member Posts: 44
    edited May 2018
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    You might be too early in your recovery. The real sharp pain after mastectomy was gone in a few weeks, but the other pain - the tightness, the discomfort, the "it's there feeling". It's still here today after almost 1 year post mastectomy and almost 6 months permanent silicone implant. It has gotten better, I wonder if this type of reconstruction is not right for me. Did you have any reconstruction? And do check with your oncologist and plastic surgeon on the supplements.

    I heard that Magnesium helps heal the nerve damage. I do accupuncture and craniosacral manual therapy for it, approved by my oncologist and plastic surgeon. It has helped somewhat.

  • SanFranKitty
    SanFranKitty Member Posts: 81
    edited June 2018
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    I should have posted here in the first place :). I am almost 2 years out. I had dcis stage 0 . Breast cancer runs on my moms side so i had double mastectomy and double reconstrction with round smooth saline implants. There is a thicker part of implant where they add the saline after they put them in. Anyway I think they have rotated a bit. For a long time my nerve damage kept me from feeling anything. But now I can feel and I have some pain on both sides, especially behind the side where the nipple almost fell off during the healing process. I have wondered if the valve is stuck behind there or something. Some days it's not so bad. Other days it hurts all day. my 6 month appointment is in 2 weeks.

  • everymoment
    everymoment Member Posts: 6,656
    edited June 2018
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    I've been waiting 3 years for the pain to 'lift' and it has not after trying massage, too many vitamin supplements to mention, gabapentin, acupuncture, etc. etc. . Some of us will have PMPS for the rest of our lives and it is tragically widely under-reported. When the reported incidence is 20-60% then the obvious conclusion is that the medical community is uninterested.

  • FaithsMama
    FaithsMama Member Posts: 74
    edited June 2018
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    I had my msx on May 18, and I still have pain and discomfort every single day. It's debilitating and alters my daily living. I am still sitting home in my PJ's every day past noon too uncomfortable to do much of anything. Taking muscle relaxers and pain killers every day, multiple times a day and throughout the night. I try to wait until at least noon, or later before taking my first does. It's a struggle. Tylenol, Advil, Ibuprofen don't do much for the pain. Sadly. 

    I am sorry for magiclight that you are having pain so many years after your surgery.  I hear one of two things from people post msx. There are the group of women that say they have no pain and wonder why I am still having pain. Then there is the group that say the pain NEVER goes away. I hope I am NOT in the latter. I can't imagine this going on for years. How do you get on with your life when the pain and pressure is all consuming?

  • LoriWNY
    LoriWNY Member Posts: 178
    edited June 2018
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    FaithsMama--Sorry to meet you here. Please, please, please do not be frustrated at your rate of recovery. It has only been five weeks! Your body is still healing and it is not unusual to be in the discomfort you are describing so soon after a mastectomy! You need to give yourself some time. Six months to one year is NOT an unreasonable amount of time to recover from this surgery, especially if you had lymph nodes removed. In addition, a DIEP flap surgery is a more invasive surgery than reconstruction with tissue expanders. Please talk to your doctor about a referral for physical therapy! This is an important step in your recovery. You will learn patience through this. Physical therapy, yoga, and massage therapy were extremely helpful to me during my recovery (I practiced yoga before BMX and continue to do so). Try not to be so hard on yourself and take it one day/step at a time.

  • FaithsMama
    FaithsMama Member Posts: 74
    edited June 2018
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    Lori: Thank you! I am learning that we are all recovering at different rates and not to expect too much from myself. However, I RE-learn it every day! This pain and tightness and heaviness in my chest is so mentally taxing, not just physically. I used to NOT worry at all about opioid addiction because I don't like taking pills and I'm not an addictive personality. Even so, because this is taking MUCH longer than I anticipated and could realistically go on for months, I worry now about physical dependency on the drugs. Taking it one day at a time. I am giving the cannabis cbd oils a try this week. 

    Oh, also, I need to change my diagnosis on my profile. I DID NOT have the diep flap, I have tissue expanders. I just didn't know what type of surgery mine was called before I had it. Thank you for the support and encouragement!

  • ginger48
    ginger48 Member Posts: 1,437
    edited June 2018
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    faithsmama- I had expanders too. I definitely had pain throughout the whole filling process. It was 7 years ago this week that I had my surgery and it took the whole summer to feel like I didn’t need pain meds and muscle relaxers. I took them like clockwork. We didn’t know as much about the opioid crisis then or I would probably have been more concerned. Luckily, I don’t have an addictive personality ( other than chocolate, lol).

    I will say that I struggled with pain and tightness for the first couple of years. I agree that PT should be an automatic referral after mastectomy. I got a frozen shoulder following my surgery. Getting someone working on loosening tight muscles,doing lymph therapy, myofascial release, acupuncture and massage helped greatly. I do still take neurontin and sometimes have the tight bra feeling but overall I am relatively pain free.

    Give it some time and give yourself a break. It’s a big surgery with big emotions attached.

  • FaithsMama
    FaithsMama Member Posts: 74
    edited July 2018
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    Thank you Ginger. It helps to know someone else has experienced this as well.

  • debal
    debal Member Posts: 600
    edited July 2018
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    Faithsmama, How are you feeling now?

  • FaithsMama
    FaithsMama Member Posts: 74
    edited July 2018
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    DebAl: pretty much the same. My ps says I have lymphedema in my chest which most people get it in their arm. This is not helping the pain go away anytime soon. I do think overall, it’s a bit better. But certainly still dealing with daily pain and needing the muscle relaxers and oxycodone daily.

  • AliceKo
    AliceKo Member Posts: 44
    edited July 2018
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    Ginger, pain for couple of years?! That sounds bad. I hope that's not my case.

    I can't say that I am in pain still, but I am definitely uncomfortable - so there is some good news there. I still want the implant out. It's been 1 year since mastectomy, 8 months post implant placement. I have done a lot - PT, massage, accupuncture and still doing it. My PS feels that you should wait 1 year after surgery to heal and implants are plan A and all others are plan B - like you have lost the implant due to a scary infection and some kind of reaction...Still thinking about DIEP

  • Calee65
    Calee65 Member Posts: 41
    edited July 2018
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    I met with RO today. I had surgery 1/25/18, chemo: AC/T, which MO stopped at 9 doses due to neuropathy pain in my surgery area increasing significantly. Soooo, not sure I want to do Radiation and end up with permanent nerve pain from it. RO today basically said it rarely happens and moved away from my questions.

    Anyone feel like radiation made your nerve pain from surgery worse..or pain only from radiation. So confused on what to do!

  • minustwo
    minustwo Member Posts: 13,116
    edited July 2018
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    Callee - what was your diagnosis? Depending the hormone status and HER2 status and size of the tumor(s) and stage of the cancer, etc. - it's hard to know how to respond. My personal feeling after long discussions with my MO was that I needed radiation to mop up anything else that might have escaped - even though I had clean margins two times in surgeries. Fortunately although the radiation aggravated my breast & truncal lymphadema, I didn't end up with permanent nerve pain in my chest.

  • Calee65
    Calee65 Member Posts: 41
    edited July 2018
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    MinusTwo

    I am stage IIA, grade 2, onc score 22. 2 of 10 nodes. I had 4 tumors in left breast, largest 2 cm, other 3 1.4cm to 1.6cm. ER+ PR+ HER- My MO said to think ‘long and hard’ before I did radiation, that the benefit may not be worth the nerve damage...which doesn’t show up until months or years later and is permanent. I also don’t want it to return...so scared of making the wrong decision...

  • carmstr835
    carmstr835 Member Posts: 147
    edited July 2018
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    I agree the nerve damage is bad and comes on months later. I now have neuropathy of my right hand, not my left (only right side was radiated) so it is most likely caused from the radiation, not chemo. it is still getting worse. I also have chest, rib, sternum, and side pain after my radiation, and worse ROM of my right arm but not a concern after my mastectomies, that was also getting worse 6+months after my radiation treatments. I had a DIEP July 10 and already my chest feels better. The PS cut out lots of fibroid tissue, scar tissue, and encapsulated seromas across both my breast areas. The blood vessels on both sides of my sternum were damaged by the radiation he called it radiation spray. Actually the left was worse than my right... I am not sure the damage won't grow back, but he is hoping the new tissue from my DIEP will help me to heal and so far I am very impressed.