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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • minustwo
    minustwo Member Posts: 13,154
    edited March 2017
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    Tomboy - thanks for posting my Cohen friend!

  • Tomboy
    Tomboy Member Posts: 2,700
    edited March 2017
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    :)

  • Falconer
    Falconer Member Posts: 801
    edited March 2017
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    Tomboy- thanks for reminding me- Topricin is what my acupuncturist used on me. Felt great. Where do you get it?
  • Tomboy
    Tomboy Member Posts: 2,700
    edited March 2017
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    You can get it at a pharmacy, some stores carry it, and also Amazon has a very good price. also directly from the distributor, topricin. There are two or three formulations, all i found to be effectual!

  • gardengypsy
    gardengypsy Member Posts: 499
    edited March 2017
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    Even though I do not have Lymphedema, I am seeing a PT who specializes in this area. My breast surgeon reccomended this post-surgery and I am finding it important to my survivorship care one and a half years later.

    My LE PT has the right exercises and massage technique that really make a difference. Wholistic care that is covered by insurance.

    Blessings to all.
  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
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    garden..Finding someone who makes a difference in your well being is so important and so glad it is also covered by your insurance. Doubly good for you!

  • gardengypsy
    gardengypsy Member Posts: 499
    edited March 2017
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    I am finding that if I don't go to PT and do my stretching exercises,my surgical war zone and arm ache considerably.

  • dimetriamajor1
    dimetriamajor1 Member Posts: 6
    edited April 2017
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    i need to know why is my pain still on a high level and the numbness is over whelming.

  • minustwo
    minustwo Member Posts: 13,154
    edited April 2017
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    dimetria - looks like your surgery was just a month ago, right? And you did have lympn nodes removed too? I'm sorry you're still in pain. I would definitely go back to the surgeon & have a serious discussion. Find out when he/she thinks the pain will subside. As for the numbness, if it's not from residual anesthesia, it's not unusual to have no feeling in your breast or part of your arm. It would depend on how extensive the surgery was. Again, that's a question for your surgeon or you plastic surgeon.

  • ravzari
    ravzari Member Posts: 32
    edited April 2017
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    Numbness is pretty normal. For about 5-6 weeks after my BMX my whole chest was numb or had severely reduced sensation (I could feel pressure on the area and that was basically it), which extended to under my arms as my breast tissue went back around pretty far.

    I'm close to 11 months out from my BMX and most feeling in most areas has returned, though I still have patches on my chest that are numb or mostly numb. In the majority of areas I can feel hot, cold, pressure, 'movement' sensation if I run a finger over the area, but can't feel pain unless I REALLY dig into the skin (and even then it's super faint). Oddly, if I have electrolysis done on the few stray chest hairs I have, I can feel it EVERYWHERE on my chest like someone raked a knife across the area instead of just sent a small electrical zap to a hair follicle and the whole area aches for about 45 minutes afterward. I'm somewhat tempted to ask her to just randomly zap hair follicles in the area to see if it make sensation in general come back.

    Some numbness may be permanent, but a lot of it will slowly resolve over time.

    As for the pain, you are still considered early stage for healing, and it's worth talking to your PS about; if you had tissue expanders put in or immediate flap type reconstruction, I've read from others that those are typically painful/uncomfortable for quite some time when compared to having no reconstruction at all.

  • everymoment
    everymoment Member Posts: 6,656
    edited May 2017
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    I'm now over 2 years since my BMX without reconstruction and the nerve pain and tightness continues at same level since the pain medication pump removed a few days after surgery. Except for Gabapentin I'm not on any pain meds. I do get some relief from the nerve pain by wearing a Dri Release breast binder most of the day. My nerve pain feels like the tissue throughout my chest has sandpaper between the outer skin and the chest wall. The breast binder does minimize that pain. I've bought several of the binders and wear them on top of a silk camisole and then put on whatever soft outerwear I choose. Unfortunately, by late afternoon the tightness becomes unbearable and I pull of the binder and deal with the nerve pain, knowing that the day is almost over and I can lay down for the night.

    Finding even some little relief is a big deal. Anyone else have a non- medical intervention that relieves the nerve pain and or the tightness?

  • bluekoala
    bluekoala Member Posts: 73
    edited June 2017
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    Sigh. I'm nine months out from mastectomy + ALND + radiation.

    Sometimes the stabby pain takes my breath away, then I suddenly become conscious of my breathing and then think 'oh no, why can't I breath properly', then I end up anxious and it gets worse. Sometimes the achy bones just make me want to curl up and cry. Sometimes the general crampy soreness makes me unconsciously curl up my shoulders. It's all left my upper body in a mess. Every muscle in my neck, upper back and upper chest is sore and tight. Working with a physio, and getting my husband to massage the knots in my back, but it is a long slow process.

    Wish I had known before how much chronic pain I would have to deal with.

  • minustwo
    minustwo Member Posts: 13,154
    edited June 2017
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    Blue Koala - I'm sorry for your pain. Mine has mostly resolved except under my arm from the radiation after ALND. If I don't stretch every single day, the muscles pull back again. The hardest thing for me is to stop hunching my shoulders and walk straight. Of course that affects my lungs. I must catch myself hunching over at least 10 times a day, and my last treatment was 2-1/2 years ago.

    Do be aware that the hormonals will cause aching bones & pain & continual soreness. I didn't have the opportunity to take them but you might visit one of those threads to discuss what women do for that.

    Good luck with the PT.

  • meg2016
    meg2016 Member Posts: 188
    edited June 2017
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    BlueKoala- I have the same. And so much tightness from radiation. I have started doing Reformer Pilates, it has done wonders both for the joint pain and the tightness and pain in my chest/arm. I have been doing it just one day a week because of my current schedule, but I feel great for about 48 hours after I do it. Doing yoga the other days helps a lot as well. And seems to be helping my posture, which is terrible now.

  • Romi17
    Romi17 Member Posts: 4
    edited June 2017
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    hi everyone, can someone please help me to determine if my symptoms sound like bone mets to arm or just a muscle thing?

    i started having a pulled muscle feeling that went from my arm, to my shoulder, to the back of my neck, after i tried to reach for something in the kitchen. That pain is almost gone, but now i have a pain in my forearm when i stretch my arm. i felt this pain 2 days ago, then yesterday nothing, and today i felt it again, its just when i stretch it or move my wrist side to side, i have no pain when the arm is resting.

    I always have had discomfort in this arm (mastectomy arm). My question is, can bone mets present like this? feeling the pain just when stretching my arm, and no pain when resting it??? i know this sounds like a pulled muscle or something, but im still worried.

  • minustwo
    minustwo Member Posts: 13,154
    edited June 2017
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    Romi - If you would go to My Profile and post your original diagnosis & treatment it would be easier to answer. How long ago was your surery? How many nodes did they take? Have you seen a certified LE/PT? Are you on hormone treatments? Did you do rads?

    I have off & on pain from both radiation & lymphadema.

    That said, I've seen on these threads numerous times that if the pain is still there in 3 weeks you should see your doc.

  • Romi17
    Romi17 Member Posts: 4
    edited June 2017
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    my surgery was 3 and a half years ago. they took 23 nodes, all neg. i've been on tamoxifen for 3 years with no problems, and i didn't do rads. i wish if you or anyone could help me find out if mets could feel like a pulled muscle, (pain when stretching, no pain when resting)

    thank you so much for your help


  • minustwo
    minustwo Member Posts: 13,154
    edited June 2017
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    Did you do chemo? Before or after surgery? Are you both ER & PR positive. What was your diagnosis? Did they test for HER2+? When did you last see your MO? Do you have regular follow-ups?

    Please post to "My Profile" and make it public. All these questions & answers make a difference.

    Since you've posted the same question on 4 threads, your profile will update to all of those threads at once when you fix it. Then hoping someone will have a better answer than the standard, wait 3 weeks.

  • Romi17
    Romi17 Member Posts: 4
    edited June 2017
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    sorry, i don't know if i correctly changed it to public. i didn't do chemo. im both er and pr positive, her2 negative. my diagnosis was IDC of 1.3 cm. the last time i saw my MO was 6 months ago, and y do get regular follow ups 9every 6 months)

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited July 2017
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    At what point is the nerve pain diagnosed as PMPS? I am almost four weeks out from BMX with SGAP recon and have nerve pain all across my chest. I'm on 800 mg of Advil 3x a day and 100 mg of Gabapentin 3x a day. Just started the Gapabentin a week ago. I guess they are taking the edge off, but I'm still very sore.

    I finished chemo and rads in May of 2016.

    I'm calling my doctors this week to see if there are any other options. I'm hoping this is just temporary like the nerve pain I had after my lumpectomy.

    Any advice would be greatly appreciated. Thanks!

  • minustwo
    minustwo Member Posts: 13,154
    edited July 2017
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    In my opinion, healing from BMX will take 3 months or longer. I would guess even longer with the flap reconstruction. Lots of stitches inside to heal & dissolve. Lots of nerves to regenerate (or not)

  • ginger48
    ginger48 Member Posts: 1,437
    edited July 2017
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    Healing took me many months. I did have tissue expanded which really added to my discomfort.

    The good news is you can definitely take a higher dose of gabapentin if you need to. Talk to your dr. I take 600mg at night and 100mg in the morning.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Flbuckeye...A pain management specialist told me that 3 months is a time line to diagnose PMPS. I waited almost 1 year to see the pain specialist which I was informed was too long. However, she was unable to provide substantive relief and my primary care doc is the one who put me on Gabapentin which I continue to take daily. I tried Lidocaine patches prescribed by the pain doc, but all they did was empty my wallet of $800 and I still have boxes of them. You can now purchase 4% lidocaine patches over the counter, where the prescription ones are only 5%.

    I do hope that you will improve and the nerve pain subsides so that you can get on with your life pain free.

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited July 2017
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    Thank you so much magiclight. That helps a lot. I finally had some relief today for a little while. I'm glad the Gabapentin is working for you.

  • jcpriest0469n
    jcpriest0469n Member Posts: 63
    edited July 2017
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    I switch from pain meds to gabapentin 300 mg x4 hr. muscle relaxer , advil and the pain is gone. Good luck to you

  • 9redheadaz
    9redheadaz Member Posts: 5
    edited July 2017
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    I am 4 1/2 years post mastectomy left side. Modified radical, meaning the pectoralis major muscle was spared though I can easily feel my ribs. I've had fibromyalgia for over 25 years, back when people said "fibro what?" so please do not be fearful that your pain will last as long as mine. I'm also a redhead and we are mutants when it comes to pain. I choose not to reconstruct at that time but I have this little pooch of skin next to my breastbone. My internist said it was probably in case I wished to reconstruct later. I have PMPS including nerve pain. When I bend over more then a few times it's very painful. I noticed a few days ago that when bending over, the skin now seems to pull away from my chest wall from gravity and from that little pouch of skin. I only wear a bra when out due to the PMPS but think I will wrap my left chest in an Ace bandage if I'm actively moving around, chores, grocery stuff. Sort of like a home version of a breast binder. I'm wondering if anyone has experienced this? Oh forgot to mention that I take tramadol 100 mg a.m. and p.m as well as Roboxin 750.

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    9redhead...Sorry you are another PMPS sufferer for such a long time. I can't address the pain on bending and your 'poooch of skin' as I never planned to reconstruct so my skin is very tight across my entire chest (double modified radical mastectomy). I do wear a breast binder like the one given to me post needle biopsy. I purchased the exact one online and it might give you more comforting support across your entire chest. I expect it is difficult to wrap an Ace around half your chest.

    As a sort of an aside, my back went out yesterday so today I upped my Gabapentin/Neurontin from my usual 600mg/day to 1800mg with significant back pain relief as well as much less chest nerve pain. I do know not to decrease dose suddenly so will taper off and see how nerve pain responds. Maybe I was on too low a dose to be effective. My big dislike of taking any meds even vitamins may be working against effective PMPS relief.

    Do keep posting so those of us with PMPS can learn about options that do/do not work.

  • flbuckeye93
    flbuckeye93 Member Posts: 27
    edited July 2017
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    Thisnarticle mentions a solution for PMPS.

    https://well.blogs.nytimes.com/2015/06/08/pain-aft...


  • AmyQ
    AmyQ Member Posts: 821
    edited July 2017
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    This procedure sounds promising. I have copied the link and sent to my Pallative Physican and Oncologist asking they collaborate and locate a possible resource for me. Has anyone here tried this and if so, was is a temporary solution or did it provide permanent relief? I am so desperate to find a solution for this constant pain.

    The two things that provide temporary relief for now are acupuncture and a lidocaine/gabapentin ointment. The ointment is expensive and only works for about two hours. The acupuncture seems hopeful for a longer term pain relief but I've only had four treatments. The therapist wants me to have a minimum of 8 sessions and up to 10, so we will see.

    Amy

  • everymoment
    everymoment Member Posts: 6,656
    edited October 2017
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    Amy, I so hope you find permanent relief.