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Post Mastectomy Pain Syndrome (PMPS)

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  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited December 2018
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    On Facebook, don't you have to use your own name? From what I've seen of it, pages keep getting longer and there aren't proper links to different sections, you have to stay on the same page and more keeps loading at the bottom slowly. Is the Facebook group any different?

  • bcbc
    bcbc Member Posts: 37
    edited December 2018
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    it is a closed Facebook group. The only ones that can read posts are ones that have requested to join the group.

    I actually prefer the set up on Facebook. You can comment on specific comments, so it's very easy to follow the comments you're interested in. And you can "like" comments so easily. So, it's very easy to be supportive without having to remember the person's name to identify in your comment.

    Best of all, the group is active. Note that it had been more than two months since anyone has commented on this page until I mentioned Facebook.

    AliceKo never did get any answers about removing her implants. I felt bad that she didn't get any answers. The same questions asked on Facebook would receive many answers.

    (From what I've read in the Facebook group about removing implants to reduce pain, some have removed them, but in general, it didn't seem to be a good solution. )

    Here's to a happy New Year for all that includes discoveries of relief for our pain!

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited December 2018
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    Bcbc, thank you for your answer about Facebook. It's good that there are lots of answers there, although it's a group you have to join specifically.

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2018
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    Thank you for responding BcBc but I do not like the Facebook set-up & format. Maybe I can remember to 'bump' this topic to keep it more active.

  • everymoment
    everymoment Member Posts: 6,656
    edited January 2019
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    Is anyone using CBD in any form to decrease PMSP?

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited January 2019
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    yes. I have a medical marijuana card and use not CBD oil, that didn’t help my pain, but Cannabis oil with a hybrid combination of Sativa and Indica strains. My pain is a constant 8 to 10. The problem is the effects of the THC , so I only use it at night.

    I had ovarian cancer twice- I am BRCA2 positive and had a prophylactic double mastectomy with FLAP reconstruction. My pain is in my entire torso. The FLAP was a huge error. My PS convinced me “best” thing to do.

    I have massive scar tissue in my entire torso, plus flare ups of Lymphedema.

    The cannabis oil does help sometimes. I’ve tried everything.,.

    Bar

  • everymoment
    everymoment Member Posts: 6,656
    edited January 2019
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    Barbara, so sorry you are in such pain. I do not want to take anything with THC component, but glad you find some relief for your pain at night. I have not tried any of the CBD products because I do not think they will work, but wanted to explore if anyone found some relief. It is a long shot, but I'm open to options.

    Gentle hugs to you and mostly hoping that one day I'll open this thread and find information on a cure for this pain.

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2019
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    Barbara I am so sorry about the pain you are experiencing. I assume you have also tried oncological massage? I have a massage therapist who specializes in lymphedema and breast reconstruction. She is also a surviver herself. And it helps tremendously although I will admit the massage itself is painful as she works the scar tissue loose. Of course, insurance doesn't pay but she is worth every penny to me.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited January 2019
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    Thank you for your kind words. I'm on my 9th practioner in addition to acupuncture, dry needling etc etc. etc

    But, actually my newest massage therapist is using a “face" blaster tool that has loosened my abdomen a bit.

    The Lymphedena is not an issue right now, it's the massive tightness and actual breast pain that is so unbearable. I thought maybe the cryotherapy I triedwould help, but I was told it's not a good thing if you've had cancer.

    For 5 1/2 years I've been on this quest to find something for this often unbearable pain.

    But, I am so grateful to be an almost 10 year cancer survivor I have learned to “suck it up" 🤗

    Thanks again,

    Bar





  • everymoment
    everymoment Member Posts: 6,656
    edited January 2019
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    I hear you Barbara...I am going on 4 years without any substantive relief. I take Gabapentin, but do not like the side effects. Myofascial massage did not work and unfortunately there are no other massage specialists in my area. Somewhere I read, perhaps here, that faking being sick is so much easier than faking being well. Sucking it up takes a lot of energy and I truly appreciate everyone here on these threads who are doing the latter. Knowing that another person understands is a tremendous help to me. Thanks.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited January 2019
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    hi- I do totally get it. The degree of pain can be so intense and I try not to dwell my family, but sometimes it is so hard to be faking it.

    I took 1800 mg of Gabapentin- all it did was make me feel weird, without lessening the pain. I stopped it cold turkey.

    This pain has truly been more challenging than the 34 rounds of chemo I had.

    The breast pain at least has a purpose, but the abdominal pain is truly the fault of my plastic surgeon who totally pushed the FLAP with no warning about potential pain from my past or possible future ovarian cancer surgery. Unfortunately, the ovarian cancer recurred 8 months after the mastectomy so I had an additional surgery.

    If medical marijuana is legal in your state, I recommend it. It does bring some relief.

    Did you have reconstruction?

    Best,

    Barbara

  • everymoment
    everymoment Member Posts: 6,656
    edited January 2019
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    Barb, I did not have reconstruction. At this moment I'm weaning myself of Gaba, though only take about 1/2 of what you did. As my pain, thankfully, does not keep me awake I do not want to take marijuana during the day. So many issues to deal with and my surgeon stated he never had another patient with PMPS - so much for truthfulness and I never went back to him for any follow up after about the 3rd post op visit.

    Belonging to the BC club sure sucks and I had such expectations of having the BLM and getting on with my life. Clearly, from your description of your situation, I have much less on my plate than you.

  • mollyboo
    mollyboo Member Posts: 7
    edited January 2019
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    There is an article on PMPS in an old Cure magazine that explained cause & treatment modalities. I'm pretty sure I have this. I have lancinating pain that goes through my chest wall to my scapula,& neck & shoulder pain. This is on the side of my BLM that I developed MRSA in my tissue expander, necessitating removal. The pain flare ups are becoming more frequent & affects my QOL when I have pain... hoping one of my docs will listen & help.

    https://www.curetoday.com/publications/cure/2013/winter2013/post-mastectomy-pain-hits-a-nerve

  • LiLi-RI
    LiLi-RI Member Posts: 160
    edited February 2019
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    mollyboo: Thank you for the article! I just started PT to work on scar tissue under right breast which radiates to back nerve. I only lasted 5 minutes on the table! I am willing to give it a chance if I can tolerate the pain. I also experience spasms with white light pain both above and below my right breast. It all started 1 year after Stage 2. I will try the numbing cream before next session. Lisa




  • Bexter3
    Bexter3 Member Posts: 15
    edited February 2019
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    Oops, thought this would go with my original post on getting Radio Frequency Ablation/Rhizotomy. It didn’t but here’s the punchline... It didn’t work long term and stopped working completely. They needed to be done every 6 months and after the third one it stopped working! I had my last one in 2016 and I just said no more. So, going on 9 years of debilitating PMPS in June.

  • Bexter3
    Bexter3 Member Posts: 15
    edited February 2019
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    has anyone tried the Spinal Cord Stimulators? There is only one small study and it was initially effective but then gave no relief. The anecdotal info from my PMPS sister's is that it didn't work for them. Any thoughts

  • everymoment
    everymoment Member Posts: 6,656
    edited February 2019
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    Bexter, so sorry you are living 9 years with PMPS and no relief in sight. Any thoughts / actual helpful interventions welcomed.

    Hugs to you my PMPS sister.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2019
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    Bexter - are you talking about a TENS unit? My SIL had one and swore by it. Anytime she went out it was strapped to her lower back. She turned it on with a remote control to control the pain. She had sever RA and spinal degeneration.

  • luvmyfam
    luvmyfam Member Posts: 53
    edited April 2019
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    I see this post has not had much going on lately. Well, I had a huge turnaround with my PMPS when I started taking Amatryptaline (25mg) nightly. It helps me get a good night’s sleep, which then helps me deal with pain, neuropathy, migraines, and daily living. I was so stressed from not sleeping well and being in pain 24/7 that I was miserable. Now, I find that the Amatryptaline helps by giving me a break from the pain. It resets my pain tolerance. Another HUGE help that my therapist suggested was using the pain scale... When my pain level goes up 2 points, I take a break and try different mechanisms (meditation, prayer, elevating my arm, nap, stretching, etc) until my pain level goes down two points. It is not always feasible, but it works most of the time. Even if I switch tasks to help lower my pain, it works

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited April 2019
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    LuvMyFam, I'm so glad you had a huge turnaround in your pain level when you started taking Amitriptyline!

    My PMPS is also less bad than it was and I've been able to reduce my Lyrica from 300mg per day to 200mg per day so far. Reducing the last amount made my body feel stressed so I will stay at this level until I feel more relaxed.

  • luvmyfam
    luvmyfam Member Posts: 53
    edited April 2019
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    Aussie-Cat, isn’t it wonderful to reduce your medication? I’m glad you were able to.

    I finally got everything dialed in and I am down to 2 pills in the morning and 6 at night. This is the level I can be “comfortable” at. Not too out of it, tolerable pain.

    Another drug that has helped is Horizant. Time-released Gabapentin. It helps so much, but it’s expensive. I can’t wait until the generic form comes out

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited April 2019
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    Thanks, LuvMyFam.

    I'm glad you were able to reduce your pain meds too. I hope the generic version of time-released Gabapentin comes out soon.

  • everymoment
    everymoment Member Posts: 6,656
    edited April 2019
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    Aussi and Luvmy...Good to hear that you both have had some success, i.e. pain relief with Gabapentin. I was on it for two years and it did provide some relief from the PMPS I've had since surgery. Some of the electric shock like pain is diminishing and went off Gaba and found that the tightness and some of the shock like stuff was unchanged when I went off Gaba. I've been rx free about 3 months and still find my pain interferes with quality of life. Like most of us with PMPS, I'm looking for significant relief, but as yet, the search goes on. Hugs to you both for sharing your experiences.

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited April 2019
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    Thanks, magiclight. I'm glad you've been able to go off your Gabapentin but I'm sorry that pain is still impacting your quality of life. I hope you find something that really helps. I've been having some success with Pain Away spray, which contains the herbs arnica, rosemary and eucalyptus. It seems to give more relief than the Ice Gel I was using and I can spray it directly on my chest so I don't get such dry hands.

  • everymoment
    everymoment Member Posts: 6,656
    edited April 2019
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    Aussie..I've not heard of Pain Away spray and getting some relief is a benefit. My medicine cabinet sure looks different since breast cancer came into my life.SickTired

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited April 2019
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    I don't know if they sell Pain Away spray anywhere but Australia but maybe a health food store near you has something similar. I have got a lot of different medications and creams since my mastectomy too!!

  • runnergirl26
    runnergirl26 Member Posts: 66
    edited April 2019
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    Since I have started on gabapentin for neuropathy pain in my feet from the chemo and neuropathic pain in my chest region I have had significant weight gain. I also take arimidex as well. Has anyone else experienced weight gain?

  • aussie-cat
    aussie-cat Member Posts: 5,496
    edited April 2019
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    runnergirl, I have also experienced weight gain with Lyrica for nerve pain. It's frustrating, isn't it!! I wasn't warned about that side effect. I Googled it and I found a forum of people discussing weight gain with nerve pain drugs. I can't find the link at the moment though. I'm sorry you're going through this.

  • luvmyfam
    luvmyfam Member Posts: 53
    edited April 2019
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    I gained weight, too and am now trying to get it off, but it is so difficult. I feel like I take one step forward and 2 steps back! I really had to lower my calories. I can’t eat too much or the weight goes right back.

    Has anyone tried Watsu? When I am in the water, it is the ONLY time I am not in pain. The therapist who used to do it cannot anymore, so I’m bummed.

    I guess I just have to stick with the Amitriptaline that helps me get a good nights rest.

  • everymoment
    everymoment Member Posts: 6,656
    edited April 2019
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    I do believe that a good nights rest helps me cope with the pain during the day. If Amitriptaline works for you, then staying on it seems like a great decision.