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Post Mastectomy Pain Syndrome (PMPS)

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  • lezza13
    lezza13 Member Posts: 579
    edited February 2021

    PMPS continues after 8 years. I did go flat so there are the nerve issues in my chest. My right arm without its lymph nodes is numb. Some things you just learn to live with. I have tried CBD cream and Arnica cream to dull the pain when it arrives. Just does not last long. I agree with your last post magiclight.

  • magiclight
    magiclight Member Posts: 6,656
    edited February 2021

    Lezza, sorry that you are still suffering with PMPS. I am almost 6 years out from surgery and although the pain has changed in its intensity, it remains something I consciously deal with daily. I've given up on medical intervention - nothing worked - and rely on wearing a breast binder all day. Hot baths help relax muscles particularly in my back so that area is less tight. Using what is beneficial, even if short term, provides moments where the body's stress hormones diminish. In my state recreational sales of marijuana are taxed at 16% in addition to local sales taxes between 6% and 9%. Medical marijuana, in contrast, has a 6.6% sales tax and 2-3% municipal tax. Pain relief, however minimal, is expensive!

    There is a web site that further explains Medical Trauma...What is Medical Trauma? | Springer Publishing.


  • lezza13
    lezza13 Member Posts: 579
    edited February 2021

    magiclight. Thanks for the link. The pain is not constant just twinges often enough to remind me. It is something I have lived with. I may actually try medical marijuana one day. Take care

  • magiclight
    magiclight Member Posts: 6,656
    edited January 2022

    image

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022

    Magiclight - that is very powerful. I'm constantly at appointments, be it PT, OT, MO visits along with others. I hear at least once a week at PT or when at the cancer clinic in the waiting area, "well you look great, you shouldn't be here" I just kindly smile through my mask and think to myself, if you only knew the pain I'm in" along with all the other bs. I know people mean well. I suppose I should just take it as a compliment. My mom has severe aggressive lupus and stage IV kidney failure and is in dialysis three times a week, she always gets dressed nicely (nothing fancy) and puts her makeup on and has always said "I may be sick, but I don't have to look it!"

  • magiclight
    magiclight Member Posts: 6,656
    edited January 2022

    Serendipity, sorry to meet you here and can appreciate how difficult it is living with pain that you do not broadcast because you 'look well.' I remember a saying about how much easier it is to fake being sick than it is to fake being without pain. I too fake looking good despite PMPS that takes my breath away. Fortunately, my PCP knows there is no fix for this unless I enroll in a clinical trial. She has prescribed Gabapentin (no longer on) and I've tried PT, massage, a drawer full of creams and salves. My best relief, for a bit, comes from wearing a breast binder, engaging in journaling, mind numbing TV, leisurely walks with my dog, photography and meditation. I no longer mention it to doctors after several have said they never heard of it. So, I walk bravely, head high, and say I'm great to those I pass on my daily walks. However, I do believe that many people I meet do the same thing as they too may be suffering but fake being OK. I do hope you find relief as chronic pain does take a tole.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022

    Magiclight - nice to "meet you".

    I was in a nasty car accident back in 2014 that brought on a slew of medical conditions and chronic pain.I finally was able to adjust to the fact that I was going to live with pain. Depression and anxiety really took its toll, but over time I learned to deal with it all. Then came the beast (bc). She kicked my butt and I've regressed in so many ways, both physically and emotionally

    The one thing that I know that helps me is being in the water (pool) and walking, unfortunately WI winter's don't allow for the pool, time to move somewhere warm lol. I'm currently taking Xeloda which is keeping me from walking as the bones in my feet feel like they are breaking. Only 4 more months to go :/ I take Gabapentin for the neuropathy, but it's not doing much of anything in in that aspect, but it is allowing me to get a bit more sleep than before, it's a double edge sword.

    Regarding the drawer full of meds...Last summer there was a drug take back where we could take all of the unused prescription meds. I remember pulling up and it was a police officer collecting the meds, I handed him the two shopping bags filled with unused meds and told him jokingly, "please don't judge me" and handed him the bags, his response..."open the trunk." It was quite comical.

    The massages are so relaxing and she was able to get me back some range of motion last summer, I'm hoping she'll get me there again.

    And I agree with you, I believe there are many others that suffer from one thing or another and put on that "I'm good" face.

    Have a wonderful night!!

  • magiclight
    magiclight Member Posts: 6,656
    edited January 2022

    Serendipity, I hope you get on a massage schedule that provides you the relief you need to increase flexibility, decrease pain and stress and overall support of better quality of life. Reminder to me: take my own advice and get back with my massage therapist.

  • runnergirl26
    runnergirl26 Member Posts: 66
    edited January 2022

    Hi all. I have lymphedema in my arm and hand which leaves me with a burning nerve type pain. Also across my whole chest I gave that same burning nerve pain. I also gave neuropathy in my feet. All this pain is so fatiguing. I take gabapentin but I can’t take during the day due to the side effects (it makes me feel really spacey and I sometimes have trouble with word finding. I can’t work while I take it so I just take it in the evenings.. Do any of you have that burning nerve pain?

  • minustwo
    minustwo Member Posts: 13,070
    edited January 2022

    Runnergirl - have you tried switching to Lyrica? I don't take either but understand drug compositions are different.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022

    Runnergirl - I just weaned off of Lyrica, my last dose was Friday after dealing with neuropathy for years prior to It worsening due to chemo. I started Gabapentin a few months ago and since both are in the same "family" I was told to pick which one I want to stay on. Lyrica also had me feeling woozy during the days, they are both very similar. I figured I'd give gabapentin a try and see if it helps the neuropathy, so far I haven't noticed a difference, but again I still have Lyrica in my system as the half life is about 5/6 days.

    It may be worth asking your doctor about the change.

    Hope things get better for you.

  • elizabethart
    elizabethart Member Posts: 1
    edited August 2022

    I haven't been on this forum since 2012 or 2013, and had to log on with a different name since I had forgotten mine, but I have some good news about my stabbing pain neuropathy. I'm happy to answer questions.

    My pain is along the intercostal nerve, and if you really dig into googling "intercostal neuropathy/neuralgia mastectomy,' you might also find the info I recently found. Here's my experience with using some off-label anti-convulsant prescriptions, the first thing that has worked for me in 11 years.

    I have had severe intercostal neuropathy since my bilateral mastectomy in 2011 because of my intercostal nerve being damaged on my left side (the right side mastectomy was prophylactic, so I don't think it was as severe a dissection).

    No doctor made this diagnosis, no one seemed to know or understand the pain, and I've been through multiple PTs rounds, nerve blocks, nerve ablations, gabapentin, Lyrical, plus lots of other drugs.

    My worst pain is under my left shoulder (scapula) in my back, with a stabbing pain that comes on strong then abates for 20 or so seconds, then feels like being stabbed again. This pain is completely off, threatening, or at 100%. There is no aching, no in-between. It ramps up quickly, and anything done with my arms brings it on. I am an artist and jeweler, and it has been very difficult to deal with. The pain makes me slightly nauseous and feel a bit frantic.

    What has worked? Jamming something under my scapula can somewhat ease the pain slightly. I live in my TENS unit, though putting it on my back/shoulder accurately myself is a PITA. Tylenol 3 or other codeine pills work, but who wants to be constipated all the time, plus endure the passive aggressive pain clinic staff...

    I also have a different pain in my left breast, in a horizontal line near my armpit. Whenever I wear any top that is a little tight, it feels like I'm being grabbed by pliers that are being twisted. I have dealt with this by wearing really big clothes. I can't wear a bra under any circumstances.

    Finally, my third neurologist (a man, "I guess it is neuropathy", has done no looking into my case as far as I can tell), wasn't available, and I saw a PA. She told me about an anti-convulsant called Oxcarbazepine which was used off label sometimes for neuropathy.

    What bliss..from the first dose I could work hard until 2-3pm with no pain, and if I wasn't going gung ho, sometimes made it through the day. She upped the prescription and I could go all day, and into the night (I do juried arts festivals, and work in spurts making pieces).

    Then, a few weeks later, I thought I was having a stroke or heart attack. Felt like a painful anxiety attack in my chest. As it turns out, my sodium and potassium had fallen dangerously low (this medicine is know for it). I spent 3 days in the hospital while they slowly brought my sodium up, as neurological damage can happen if sodium is raised too quickly.

    After going off the medication, the nerves were upset. My back was itching as the nerves regenerated or whatever was going on without the medicine. I was back to living in my TENS, and the pain was frequent and as bad as ever.

    After I was given the all-clear, the Neurology PA prescribed Lamictal, which is in the same classification of drugs of Oxcarbazepine. It is not quite as effective, but it is helping. I asked today to have the dosage upped, and am waiting for a response.

    And I was fully willing to go back to the original drug, the one that put me in the hospital. And I'm sure most of you understand that...if you haven't felt normal and have been in pain for years and years, it's seems worth anything to get back to "normal." But the PA wasn't comfortable with that.

    *PSA...If you get put on Oxcarbazepine, insist on regular sodium and potassium level bloodwork!*

    I have hope, finally, after 11 years dealing with this pain. I hope all of you find relief, and doctors and PAs that believe you and work to heal you. And I hope this helps someone find relief who may be suffering from the same pain with no relief.

    One more piece...my nephrologist (as kidneys are the base of everything) in the hospital, who had final say in my care and release, told me that I had exhausted every medical option in this area, and that it was time to find a "center of excellence" for neuropathy. This is a center that treats neuropathy with multiple doctors in various fields. So a pharmacologist, neurologist, anesthetist, and other doctors work together to diagnose and find options. My closest option is Penn, and I plan to go there if this medicine doesn't work out as I'm hoping it will.

    xo

  • jwoo
    jwoo Member Posts: 931
    edited August 2022

    Hi all,

    I had my DMX in 2013, and 2 DEIP surgeries in 2016. I have PMPS, especially on my prophy side (of course!) I would count my case as moderate (low level discomfort all the time with the occasional excruciating flare up.)

    I haven't had a TDAP shot since before my DMX, but had to have one one 2 days ago. I've had other vaccines with regular side effects, and get all of them in my thigh or hip due to LE. Usually the SEs I get are that general fevery feeling, fatigue, injection site swelling, etc., but last night I had the most intense and longest PMPS episode I've ever experienced and a wondering if anyone else has had this happen after a TDAP. Also, The injection site on my thigh was far more painful than I remember it being in my arm, and I actually could not bear weight on my leg or bend my knee yesterday.

    Just trying to narrow down the possible trigger as I know I'll need another TDAP at some point. Could be that it is the antibiotics they gave me, or just the fact that my body is working extra hard to heal the gnarly wound that preceded the shot and that is why my nervous system is unhappy. But the extra pain in the injection site made me think that I might be experiencing a more serious inflammatory response than usual that kicked off this episode in my chest.

    If you've experienced this with the tetanus shot, please feel free to PM me or just respond below.


    Thanks!

  • themrslewis
    themrslewis Member Posts: 10
    edited December 2022

    Has anyone tried hyperbaric oxygen therapy to treat pain and heal? I am at the end of my rope. 3 months after radiation ended and it is getting worse. Feels like my skin is going to peel off. Less shooting pain now but intense burning all around breast, underarm, ribcage

  • jwoo
    jwoo Member Posts: 931
    edited February 2023

    I didn't try anything like a hb chamber, but my real nerve pain didn't show up till about a year after my mastectomy. Or at least, i still had surgical pain for so long, then a month or 2 lull. I'm 9 years out from my mast, and 6 from my last reconstructive surgery. Nothing is better. Nothing I have tried yet has stopped it. I'm not going to stop searching for something that at least dulls it. It's appalling that amputation nerve pain still happens- it's 2023 and there should be some kind of relief for nerve pain sufferers that doesn't cause more problems.

  • maggie15
    maggie15 Member Posts: 846
    edited February 2023

    My nerve pain is not due to mastectomy (I had a lumpectomy) but radiation followed six weeks later by thermal burns from an accident that landed me in a burn unit. The burn surgeon explained that the pain comes from scar tissue encasing or pressing on the nerve endings, so surgery alone could cause that. After the initial skin healing the surgeon used CO2 laser treatment to help with my left hand and trigeminal nerve on the left side of my face. It took 3 outpatient surgical procedures (I was knocked out) but it helped a great deal even though I still have low level pain. He could not treat the radiation field since the laser is not approved to be used in the local area of a solid tumor (it might be OK but nobody has tested it.) He referred me to a LE therapist since there was also LE in the radiation field.

    The therapist couldn't help much since touch or compression sent the pain level sky high. She gave me some exercises to do and recommended acupuncture. The acupuncturist did a procedure developed in Japan after the atomic bomb which helped reduce the LE. She then worked on the nerve damage which, while not cured, is more tolerable. I wear loose clothes and "tent" the blankets on my bed. I take gabapentin just at night to sleep.

    I wouldn't recommend going up in flames to anyone but the providers who deal with burn patients do not dismiss the pain and itching as something minor that must be endured. When the breast surgeon's NP scoffed at my taking 5 days worth of oxycontin before and after my mammogram I told her to contact my burn surgeon if she had any questions.


  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited February 2023

    Maggie, I'm sorry you've been through so much! It's terrible that the breast surgeon's NP scoffed at you. I hope you get treated better in the future.