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Post Mastectomy Pain Syndrome (PMPS)

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  • nash
    nash Member Posts: 146
    edited August 2018
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    Thanks, Barbara. Yes I tried mj. It had no effect for me.

    I just had my second round of Botox, and it seems to be helping my back slightly. My back has been in constant spasm on the LD flap side ever since the surgery over three years can ago. My front and side don’t feel better yet.

    No, my drs would never admit their role in my stage IV situation. I’d fired that team before the new primary/brain mets anyhow. My PS kept acting like I was overreacting about the post op tightness—she said I was like the princess and the pea. My former onc said there was nothing physically wrong with me and that my mind was just not accepting the LD flap surgery. Horrible drs

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited August 2018
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    Nash, I'm so sorry that your doctors said you were overreacting and there was nothing physically wrong with you! How would they know!!! I'm glad you fired them. I agree about horrible doctors! I hope your current doctors are a lot better and treat you with respect as you deserve. We all deserve to be treated with respect and believed about the pain and discomfort we're feeling.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2018
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    My plastic surgeon was so arrogant - denying breast and abdominal lymphedema even existed. He just dwelled on my scar tissue like it was my fault. Meanwhile, he repaired a hernia caused from ovarian surgery and it was back in 6 Months.

    He never recommended PT or massage or seeing a breast rehabilitation dr, although there was one in the same building.

    Living with this pain nonstop since July 2013 is very frustrating when nothing helps.

    It is great to read some women get relief. I do see an energy healer, which overall does make me feel a little lighter mentally and physically.

    Have you ever seen an integrative MD regarding the cancer and pain?

    Barb



  • everymoment
    everymoment Member Posts: 6,656
    edited August 2018
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    klgnyc: As to your question re: my pain. It varies from 1) tightness that spreads across my chest and across my back that makes me work to take deep breaths; 2) prickly pain in the back of my upper arms but mostly on the L side (sentinel node removed from both sides) 3) deep pain/soreness that feels like I've been kicked in the chest. 3) when all 3 or more are present I could just scream. My back tightness is lessened with a heating pad, a hot bath or jacuzzi. Need I say I love my tub and set candles, music and a generous pour of lavender baby bath into the tub.

    I am buoyed up by all of you sharing what you life is like in this boat. Finding my breath in the center from where this pain originates and spreads opens a crack and lets a lighter feeling reside.

    This image is from Science Friday art related to Steven Hawking's book.

    image

  • Calee65
    Calee65 Member Posts: 41
    edited August 2018
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    Magic light...beautiful picture..makes me feel serene!

    Makes me mad that your doctors don’t listen to you all. Mine said “they’ve never had a patient with pain like mine, but everyone is different so they believe it’s real”. Which helps a lot mentally to know you have support!

    Had Botox a week ago tomorrow, I feel a small amount of relief so far...hoping it continues more, wish it worked for everyone

  • klgnyc
    klgnyc Member Posts: 26
    edited August 2018
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    Having done everything - PT and massage, creams, Botox, acupuncture, nerve blocks, spinal block, revision surgery, Lyrica, and now the Gabapentin - I am absolutely the patient docs hate. Thing is, I did everything that wasn't meds before finally trying the meds. And even now I'm on a super low dose of Gabapentin and doing hypnosis in the hope I can stop meds eventually. FYI, I have a bit of lymphedema in my arm, too, but that doesn't cause me pain, and I wear fun compression garments (designed by LympheDivas but cheaper on Lymphedema.com) so it looks like I'm all tatted up ;)

    image

    My physical rehab doc said there's no reason I should be in pain, so perhaps my brain is feeling pain that is no longer there; he's the one who referred the therapist who does hypnosis. That may be true, but the pain sure feels there to me and it makes me angry which is apparently inhibiting treatment.

    I don't wish this on anyone, but somehow it makes it easier to know that there are other women out there who get it. Who don't think I'm being selfish when I complain about all of the ridiculous complications because, after all, I should be happy to be upright and breathing. Of course I am, but I also want quality of life as we all do...

    I'm not a "why me" person so I never asked that question. And with breast cancer affecting one in eight women, why not me? I do ask why can't I find some way to feel better and move forward. Often.

    Thank you all for just being there. It helps.

  • AliceKo
    AliceKo Member Posts: 44
    edited August 2018
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    That's right "shut up and be greatful". I hear that a lot, from other people, patients and doctors. At least I can see I am not the only one. Sorry for all of us having to deal with after effects

  • dkk
    dkk Member Posts: 47
    edited September 2018
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    So glad I found this topic and thanks to all of your posts. You have reassured me that I am not out of my mind. I have told my oncologist, radiologist, surgeon and medical doctor about my burning, stabbing, VERY sensitive pain in my armpit and across my left breast where I had my lumpectomy and sentinel nodes removed. I was recovering well did my chemo & radiation. 9 monthes after my surgery this pain starts.

    All the drs say the same thing.... Take Tylenol, it will gradually go away. OTC pain relievers do not help the pain. Thanks to you ladies I have tried some topical rubs that dull the pain for an hour or so.. Better than no relief.

    I am beginning to wonder if the emotional/ mental fact that nothing is helping and my doctors are ignoring that fact of my nerve damage is making me fell like crap worse than my nerve pain itself.

    I am so afraid of taking pain meds, they always put me to sleep or make me feel woooozy.

    At least on this site I can see there is some home. I just can't settle for the commits from the Drs. Take Tylenol and wait. It has been 4 mos now in this pain. Thanks for letting me rant,,


  • AliceKo
    AliceKo Member Posts: 44
    edited September 2018
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    DKK, sorry to hear that you have joined our pain club. Indeed Tylenol is probably not something that will help you. The treatment is so unkind that while it treats us, it also leaves us sick. The new trend is to reduce treatment for those who are candidates and who are willing to take on more risk. Your pain is most likely the result of radiation, which shows itself months after the actual treatment. Did your radiation oncologist at least mentioned it? When I met with radiation oncologist she talked about it like it was a gift straight form heaven and not something dangeous.

    Physical therapy may be worth a try (not for me though).Like I wrote earlier, I do craniosacral soft tissue work and accupuncture. I have literally spent thousands of dollars, way more than what they paid the surgeon, to correct what they have done and reduce my pain and discomfort.

    Good luck

  • minustwo
    minustwo Member Posts: 13,132
    edited September 2018
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    DKK - my RO told me that rads works like a rubber band. I'll have to stretch the arm & chest every single day or the muscles & tendons will start to pull back. I know it causes pain.

    Also you might consider going to a trained lymphadema physical therapist. I have breast & truncal LE that can cause continuing pain. I posted a link below that has lots of good recommends & tips. Several of our BCO women were involved in creating this site.

    https://stepup-speakout.org/


  • AliceKo
    AliceKo Member Posts: 44
    edited September 2018
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    Thank you, Minus Two. Thankfully I have no lymphedema (very lucky and because I insisted on sentynel lymph node biopsy and no radiation. Was not so lucky with the PMP. My craniosacral therapist does lymph drainage, so I get it anyways

  • Starmusic
    Starmusic Member Posts: 6
    edited September 2018
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    Thank you, all, for such beautiful support!

    My story seems a little different from what I have read, so I don’t know if this is PMPS or not! I am trying to find out the cause of these strange stinging, burning pains and tingling right around the mastectomy site and below my left shoulder FIVE YEARS LATER! Thankfully, no pain during those 5 years. That’s what seems different from what I’ve read here and in articles. So maybe it is not related to mastectomy.It suddenly started about a month ago, and goes on intermittently all day long. Doctors have not heard of this being related to mastectomy. Chest X-ray negative, CT tomorrow.

    Has anyone else had this experience?

    After Lumpectomy- weird tingly pains.

    Mastectomy- no pain!

    Five years later - weird, burning, stinging, tingly pains. Thank God, not so bad they keep me awake at night!

  • moderators
    moderators Posts: 8,097
    edited October 2018
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    Hi folks! We thought you'd be interested in this new BCO Podcast:

    Post-Mastectomy Pain Syndrome: What It Is and How It's Treated

    October 5, 2018



    Stubblefield

    Michael Stubblefield, M.D. is medical director of cancer rehabilitation at the Kessler Institute for Rehabilitation in New Jersey and the national medical director for Select Medical's ReVital Cancer Rehabilitation program. He is known around the world for his expertise in the identification, evaluation, and rehabilitation of pain and functional disorders caused by cancer and cancer treatments, particularly problems caused by radiation and chemotherapy. Dr. Stubblefield is an accomplished researcher and has published extensively on medical rehabilitation, oncology, pain management, palliative care, and neurophysiology.

    Listen to the podcast to hear Dr. Stubblefield explain:

    • the definition of post-mastectomy pain syndrome and the different ways it affects people
    • how surgeries and radiation can cause this pain syndrome
    • treatments for post-mastectomy pain syndrome
    • the three things that anyone experiencing post-mastectomy pain syndrome should know

    Running time: 29:38

    Listen or read the transcript now

    .

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited October 2018
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    Thank you so much for this information! I am feeling helpless at this point. I am now experiencing debilitating chest spasms in addition to overall pain from multiple surgeries. I would love a recommendation for a doctor close to RI? Many thanks

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2018
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    I may be missing something in the podcast related to treatments for PMPS but I could not detect any treatment that is successful across the board and as he states "because our definitions for it [PMPS] are a bit of a moving target and it's not something that is really well studied, we don't have a great answer." I was so looking for better data on treatments that go beyond a hit or miss approach.

    Maybe because I've had my pain since surgery and I've learned to deal with it on most days, I'm afraid to try some of the invasive procedures he described that could make my pain worse.

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited October 2018
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    magiclight, I agree it's disappointing that it isn't clearer what treatments will help PMPS. Have you tried PT and acupuncture? I haven't tried them but I was wondering if acupuncture may help me. I haven't heard of anyone in Australia offering specific PT or massage for PMPS. I wish you the best in finding treatment that works for you.

    I have felt less sore since I worked out that rather than putting a little cushion between me and the seat belt in the car, it feels better to have the cushion on my side to make the seat belt stick out and not touch my chest.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2018
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    Aussie, I've not tried acupuncture, but I did do PT after surgery to get full range of motion, which I still have. Also, I tried fascia massage and that did not help but I've been thinking I might try that again however at $240 per treatment and needed about a dozen treatments that is prohibitive for me. I am on Gabapentin and I do wear an elastic binder which I find does give some relief from the nerve tingling. Also, I only wear very smooth polyester or silk next to my skin (binder goes on top of that) and very loose fitting tops with raglan sleeves. I've also tried prescription pain patches - no relief. By the evening, a hot bath and glass of wine does help ease some of the related muscle tension in my back.

    Are you working out with weights?

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited October 2018
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    magiclight, I'm sorry the fascia massage is so expensive and it didn't help you when you tried it. No, I'm not working out with weights but I do some stretching and self massage of my chest. Why do you ask? I find using a menthol gel on my chest helps, plus I see an osteopath every 3 weeks and I don't have limited movement from surgery. The Lyrica I'm taking (150mg twice a day) limits the amount of pain but doesn't make it go away.

  • Calee65
    Calee65 Member Posts: 41
    edited October 2018
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    I take Gabapentin..1200 ml daily and it helps with the pain but it doesn’t go away completely. I also use Magnesium cream...that ‘calms’ the pain when it’s screaming..but it doesn’t last for very long. I just started cold laser therapy, first 3 treatments I could tell immediately ‘something’ was happening and it felt somewhat better. Then 2 days later it was screaming again, so Dr. set the therapy for inflammation, and it did feel better after that treatment....so I’m going to keep trying them and see if it will help with the pain long term

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited October 2018
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    Calee65, it's a pity that most treatments don't help for very long. It's interesting about the magnesium cream. I hope the cold laser therapy helps you a whole lot!! I haven't heard of that before and I don't know if they have that here.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2018
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    Aussie...I asked about working out with weights because I may have misunderstood it when you wrote " I have felt less sore since I worked out". On rereading the rest of the sentence is " putting a little cushion..." on seat belt. So much for my focus SillyHeart

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited October 2018
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    LOL, magiclight. That's okay.

    Winking

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2018
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    starmusic- I wonder if it could be nerves that are regenerating and causing those sensations?

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2018
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    J0 - Sorry you are in continuous pain. I cannot use the seat belt in the usual way, but do want to use it for safety. What I've found to help keep the chest restraint part of the seatbelt loose is to attach a very large metal binder clip (binder clip is what the office supply store calls them) close to the top part of the belt to prevent it from sliding to the tight position. Obviously, this is not as safe as the auto-adjusting mechanism, but I feel it gives me added security without the seatbelt tightly touching my chest. The bigger the clip the better it holds and does not get caught in the mechanism.

    One of the great things about this site is that members often provide numerous suggestions, of which some do and some do not resonate with the need. Maybe you have already tried this without success.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited October 2018
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    magiclight...could you post a picture of how you do that with the seatbelt? I find myself holding the seatbelt away from me if I have to drive more than about 10 minutes.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2018
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    Joanne, the clip in the picture is what I use and it does need readjusting nearly every time I get in the car, but that is not a big deal for me as long as the shoulder strap is not constrictive. Fingers crossed that the or something else works for you.

    Here is a picture of the metal binder clip attached to the shoulder seat belt where it inserts into the winding mechanism. As I write this, it does seems complicated, so hope the picture helps.image

  • AliceKo
    AliceKo Member Posts: 44
    edited October 2018
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    Wonder if anybody gets improved symptoms from removing the implant or doing a different kind of reconstruction, such as DIEP

  • bcbc
    bcbc Member Posts: 37
    edited December 2018
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    For those that follow this thread, I would suggest joining the very active Facebook group "surviving post mastectomy pain syndrome,"

    We're all in this together.

  • minustwo
    minustwo Member Posts: 13,132
    edited December 2018
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    Sorry - I don't do Facebook at all. That's one of the reasons I'm so grateful for the BCO discussions.

  • bcbc
    bcbc Member Posts: 37
    edited December 2018
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    Minus two, I do understand your aversion to Facebook, but the activity of that group is very supportive. I wish this group here was more active.