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Post Mastectomy Pain Syndrome (PMPS)

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  • OhappyDay
    OhappyDay Member Posts: 1
    edited May 2019
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    Hi there! I’m only almost 2 months out from mastectomy and silicon reconstruction. How do I know if it’s this or normal healing pain this soon? I also have fibromyalgia, so I deal with pain daily. Could the pain be from this or made worse because of it? I have the iron bra feeling and pain. Would taking the implants out help

  • moderators
    moderators Posts: 8,067
    edited May 2019
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    Hi Ohappyday! We want to welcome you to our community, although we're so sorry for what you're going through. Everyone heals from their surgery differently, but it can take some time for the pain to completely subside and for you to start feeling like yourself. If you haven't already, we urge you to discuss the pain you're experiencing with your surgeon. It's very possible that the pain is associated with your ongoing recovery, but your surgeon should be made aware of any pain or other side effects that don't feel normal to you. They may be able to come with a plan to help!

    The Mods

  • minustwo
    minustwo Member Posts: 13,116
    edited May 2019
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    It's also possible you have some lymphadema. Did you have chemo? Did you have radiation? If so that's another issue as the tissue changes. Good call Mods. Most docs say AT LEAST SIX WEEKS, but if you haven't seen your doc regularly since the last surgery, do make an appointment.

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2019
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    OHappyDay I am closing in on a year post BMx. I definitely had the iron bra feeling at two months. I suspect it is part of the healing process. I am much better now, although I do still have issues with some scar tissue that oncological massage and exercising help to resolve. Definitely discuss what you are feeling with your doctor. She/He will be best to guide you to any next steps to take. Wishing you well.

  • MBPooch
    MBPooch Member Posts: 40
    edited May 2019
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    Wondering if anyone has experienced anything similar. I'm a year and a half out from BMX due to DCIS and Pagets with direct to implant. My recovery was surprisingly easy but recently I've noticed some changes on the left side, cancer side. It started with an annoying itch sporadically during the day. That lasted about a week. This past week there's more of a general tight feeling along the outer left side. Almost along the ridge of the implant. Not really pain, just a noticeable tighter feeling and a little sore here and there along that left side. I'm thinking its nerve regeneration but haven't seen any similar posts. My breasts look and feel the same but that left side is just a bit tighter and more sore. More uncomfortable in a sports bra and almost unnoticeable when not wearing a bra at all. Anyone else experience anything like this and if so how long did it last? Did it go away on its own or did you go in?k. Thanks in advance!

  • minustwo
    minustwo Member Posts: 13,116
    edited May 2019
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    MB - it's hard to tell w/o your diagnosis and treatment posted. When was your surgery? Did you have chemo or are you taking Als? Did you have radiation? Tightness happens over & over to my radiated side if I don't continually stretch. If it lasts more than two weeks, the recommended wisdom if to make a doc appointment.

  • bella2013
    bella2013 Member Posts: 370
    edited May 2019
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    MBPooch,

    I am 15 months post BMX with DIEP Flap reconstruction and I recently started having the tight band feeling I had post surgery. It lasted a couple of days and then eased off. I believe that healing is a process and on many levels we feel like we are healed but there’s always more healing that needs to occur.

    If you are concerned...check with your doctor

  • aliciacantu84
    aliciacantu84 Member Posts: 2
    edited May 2019
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    hello everyone

    I had bilateral mastectomy with reconstruction one year ago, now ive been experiencing burning and shooting sensation it’s not super painful totally bearable but scary.

    Is this normal? I have it almost every night.. also pain and itching around the scars

  • MBPooch
    MBPooch Member Posts: 40
    edited May 2019
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    MinusTwo - Updated my signature and I agree that if it doesn't resolve this next week it's time to get it checked out. Wondering if I was just overdoing it with arm weights and that side is more sensitive due to the SNB.

    aliciacantu84 - I've had that shooting and burning before. Sometimes when I over stretch too much.

  • lezza13
    lezza13 Member Posts: 579
    edited May 2019
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    aliciacantu84 - everything you are experiencing is normal. It all is tolerable and it comes and goes. I sometimes will just rub the areas of the scars and that seems to help. . I am sure you can find ways to deal with it. It is annoying for sure

    MBPooch- the tightness under my arms seems to linger. I try not to lift heavy weights because then it does hurt.. I do not have implants so I cannot say much about that area.. I would go to the doctor and get it checked out.

  • everymoment
    everymoment Member Posts: 6,656
    edited August 2019
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    Is anyone using CBD oil for PMPS? I've been researching CBD oils from qualified and verified sources, but would love to hear if anyone is using it and finding relief, or not getting relief from PMPS pains.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2019
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    hi- I’ve tried several cbd oils that did not work. However, the oil with medical marijuana oil that contains THC has helped me. Unfortunately, I started getting terrible headaches. I can’t win!

    It’s worth a try. My pain also consists of terrible scar tissue pain from two ovarian cancer surgeries plus the FLAP reconstruction, but maybe it will help you. Worth a try!


    Good luck!


    Bar

  • everymoment
    everymoment Member Posts: 6,656
    edited August 2019
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    Barbara...you are so right - sometimes just can't win.

  • FrenchPorsche
    FrenchPorsche Member Posts: 4
    edited October 2019
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    Hi. I’m new to this part of the forum. I’m coming up six months since my mastectomy with immediate silicone implant. In the past few days I’ve been getting intermittent periods of pain where it comes in waves and sort of takes my breath away (eases off after a few mins and then comes back again a few minutes later). I haven’t had this type of pain for months and when I did, it didn’t come in waves like this. It’s not a sharp pain, more deep, slow and intense. I don’t have any noticeable swelling or anything I can see that’s different (and had no rads or chemo). Has anyone experienced this and have any insights for me?

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited October 2019
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    limegreen, I had bmx on 8/13/19 and had the chest pain/numbness and arm numbness/cording. While I still have tenderness and numbness it is getting better almost daily so hopefully you will be getting some relief soon. I was told the chest numbness will be permanent. It’s weird but not painful. Stretching helps a lot. I feel so bad for you gals that have this ongoing. A good friend has PMPS and suffers so much. I continue to be appalled by the lack of full disclosure about post op issues. What do they think we’re going to do......say, “no thanks I’ll just keep my breast cancer”. So many good posts on this thread. Hoping for some relief for everyone.

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2019
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    I had that feeling and was told it could be due to nerves that are regenerating. It felt like little zings.I would check in with your doctor if it continues to bother you.

  • GoMama
    GoMama Member Posts: 47
    edited November 2019
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    I've been getting intermittent pain and some zingers/zaps lately. I had my mastectomy in late June. I feel for those of you who've had it for years. I did find this article.

    https://www.curetoday.com/community/bonnie-annis/2017/05/understanding-post-mastectomy-syndrome


  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited November 2019
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    Thanks GoMama, good article.

  • lezza13
    lezza13 Member Posts: 579
    edited November 2019
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    Thanks GoMama, an excellent article. It sure explains a lot! As the phrase goes: The nerve of those nerves!

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited December 2019
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    I wrote in another forum, the "Post Mastectomy Pain Syndrome" about the pain after mastectomy! We created a Facebook group, a closed group of almost 80 Ladies! A place to get support, to vent and eventually find answers! The group name is Surviving Post Mastectomy Pain Syndrome (PMPS) and the address is : https://www.facebook.com/groups/759940397434876/

    Also we have another page, a Public page where you can find articles, and give the chance to your friends to see what is to live with Pain!

    The description of the group is " An open group to share, inform, and raise awareness for Breast Cancer Warriors who have Post Mastectomy Pain Syndrome (PMPS). We welcome patients, caregivers, family, friends, all those who are touched or work with breast cancer patients who have PMPS, and hope for a cure.

    Many women suffer without knowing about PMPS, an overwhelming number where not warned about the risks of getting PMPS. There is no cure. There are limited and often horrific procedures to try to control the symptoms.

    We need voices and champions for our cause!

    https://www.facebook.com/groups/775398739265638/

    Please spreed the word!

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2019
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    I hope you will still post your thought here. Along with a number of others, I don't do Facebook at all so I hate that the discussions are leaving BCO.

  • everymoment
    everymoment Member Posts: 6,656
    edited December 2019
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    Sadly, the facebook group provides more than this false hope promise provided to a new PMPS sufferer on this thread where the advice was "Everyone heals from their surgery differently, but it can take some time for the pain to completely subside and for you to start feeling like yourself." So, are we all feeling better now that we have been assured that the pain will completely subside? I'm still waiting 4+ years post surgery and have still not 'healed'. Pain, tightness, throbbing, numbness, etc, etc.etc.etc. sure does not feel like healing is occurring and if roughly 30% of women have PMPS after lumpectomy or mastectomy than that is a whole lot of people not healing. It seems that the Facebook space is a safe and supportive space for discussion of PMPS and where empathic validation is writ large.


  • lezza13
    lezza13 Member Posts: 579
    edited December 2019
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    MinusTwo I agree with you. I think there are still those of us who do not want use Facebook. I will join you and continue to post here.

  • ShaneOak
    ShaneOak Member Posts: 84
    edited December 2019
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    Dropping in to vent for a minute since all you wonderful people get it. I’m 7 years out from my BMX and the itching and random “zings” of pain are still a daily annoyance as is the shoulder blade pain. Itching goes through the roof after a cocktail so no relief there. Considering a check up with the PS but know that I will leave in anger and frustration when he says it’s nerves regenerating and just part of having a BMX. Wondering if it’s time for an exchange or if that will even help? Take care all!

  • Via
    Via Member Posts: 5
    edited December 2019
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    it’s truly incredible hw doctor don’t educate us about the pain afterward. I don’t understand why!?! Maybe they ate scare we won’t have the surgery. I rather they are honest with me and I can get mentally ready for whatever comes my way! But we have survived and enjoy your gran

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited December 2019
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    I get the impression that a lot of doctors aren't very familiar with Post Mastectomy Pain Syndrome (PMPS) and even the ones that know about it in theory don't know what it's like to actually have it. It's true as well that a lot of doctors don't warn us fully about the possible side effects of surgery.

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2019
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    From what I've seen, the majority of patients (breast cancer or other) do not really want to pay attention to their regular drugs, let alone treatment for a major issue. They don't want to know. They just want to turn it all over to the doc and have him or her "take care of it". I'm always amazed at the number of women who have no clue what chemo they had or what their diagnosis was - other than just cancer.

    When my Mother was little, a doctor was "god". You didn't ask anything or question his prescriptions & orders. I think it's great that many patients are becoming partners with their docs in their health care. But - there are still a lot of patients AND doctors who haven't made the transition. My solution is to shop for a doc who is willing to share and discuss whatever the issue might be. And docs that are willing to learn from patients. It's harder than you might imagine.

  • LoriWNY
    LoriWNY Member Posts: 178
    edited December 2019
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    Minus--You have said something that rings so true to me. I totally agree that the doctor/patient relationship today should be all about sharing and discussing. A doctor who allows his/her patient to have an opinion is rare and a doctor who values learning from his/her patient is even more difficult to come by. One of my doctors told me that his patients who had the best outcomes were those who did their own research, discussed and weighed their options with their medical professionals, but made their OWN decisions. Once I heard that from this particular doctor, I knew he was the best fit for me. I know/have known some women who don't know all the details of their diagnosis and just do whatever their doctor tells them to do without looking into the best options for them--unfortunately, these women I knew/know are no longer on on earth or not doing well today.

  • everymoment
    everymoment Member Posts: 6,656
    edited December 2019
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    I agree that people need to be as informed as possible re: treatment options. However, I do not agree that patients are to blame for doctors who are too often lousy at communication. They are trying to sell you on the procedures they perform and then when the outcome, in my case, PMPS, they claim ignorance of its prevalence. Additionally, everyone does not get paid time off work to visit many doctors and some people do not understand the medical lingo. Prior to surgery, I reviewed the major hospital sites information about my planned surgeries and did not find any information about PMPS as a highly likely potential side effect. Even on this site, when I looked at the comments to people preparing for surgery was unable to find anyone who suggested asking the drs about PMPS.

    PMPS is, according to the doctor listed on the opening page of this thread, not a diagnosis until 3 months after surgery. By that time, if you are not have reconstruction, one is long past your surgeon being interested as long as your external surgical site is not the problem

    Was anyone here given information about PMPS prior to surgery? If so, what was the information?

  • redhead403
    redhead403 Member Posts: 65
    edited December 2019
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    I am a health care professional and no, no one mentioned it. I like to think that I am informed. Never saw it mentioned in any information I have read