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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • rianne2580
    rianne2580 Member Posts: 10
    edited January 2012

    My pain comes and goes, overuse, lifting heavy items in the moment is not painful, but that night it is horrible. I keep thinking to use the chest muscle and make it stronger, I stretch, I message, I work out. I can't seem to get it right. My RMX was in March 2011, will this on and off pain go on forever? I realize this surgery is like an amputation and I understand amputees have phantom pains for the rest of their lives.

    Another question for those in the know, is it our muscle, tendons or nerves that cause this pain? Would cold compresses, hot compresses help? I've tried them both, but not sure if that's good for LE. I have not yet had LE symptoms but am going to fly next week. I have a sleeve and hope that's good enough...: } thanks!

  • Estel
    Estel Member Posts: 2,780
    edited January 2012

    rianne2580 - regarding heat/cold compresses for LE...be careful. For me, heat causes me to flare. If I were to put heat on my LE hand, it would swell big time and hurt. Ice can cause rebound swelling on the LE limb. Since you haven't been diagnosed with lymphedema it might be worth a try but use caution if you ever are diagnosed because it could cause a flair.

  • kriserts
    kriserts Member Posts: 61
    edited January 2012

    Rianne, if you go back a few pages, someone posted a study that suggests the pain can come from different sources, I think they named 3.

    I know, for me, the pain was diffuse for a long time, but then grew more specific, and I can point to the implaint and a neuroma, or cut nerve under my arm, as 2 different causes. Docs now are suggesting fat grafting along the scar and over the implant as a solution. (I found another study on the internet, go back a few pages, that suggest fat grafting as help for PMPS.) The last doc I met (who I'll probably do total FG with, taking out the implant) she said she's put fat back into my arm pit, and over the cut nerve, and that should help.

  • rianne2580
    rianne2580 Member Posts: 10
    edited January 2012

    Thanks, both of you. This makes me think the experimental recon that Suzanne Sommers did is what I hope becomes standard. They reinject your own fat and stem cells back into the breast and underarm. The stem cells recreate a breast, but the fat would do what you're suggesting by coating the nerve endings. I wish they would hurry up with that as I did not have recon and would consider that surgery, not lots of cutting just injecting.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited February 2012

    UUGGGHHHH>>>>> I need to vent. I am so tired of reading people saying oh mastectomy (with or without node dissection) is no problem, very little pain, etc. Had I read all that happy happy joy crap before my BMX with node dissection, I would be mad that I wasn't warned what kind of pain I could have since I have it now. Not everyone comes out of mastectomies and node dissections (even lumpectomies are partial mastectomy) without complications or pain. I think there could be a better way to say well, I didn't have any problems but I have read about other people having problems. What is going to happen when someone who had been told what a breeze mastectomy/node dissection is, and they wake up with PMPS or get scar tissued adhesions, etc.

    I realize not every one has a lot of pain afterwards, but I am just getting tired of reading about people telling other people what a breeze or how easy it is. It is not easy for everyone!!

    I am not mad or jealous of the people who had easy post ops, but it just seems to negate that some of us do.I realize we need to be supportive of those with upcoming surgeries and not scare them, but there needs to be a balance of being supportive, but also letting them know there could be complications. 

    I was totally unaware that amount of pain I woke up in was NOT normal. It took over a month or two when I called the American Cancer Society and talked to a sweet lady who asked, is there anything else, how is your recovery? And I mentioned my pain, and it was she who sent me the info. on PMPS.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited February 2012

    Cinnimon~  I wish you freedom from your PMPS symtoms soon.  I have been dealing with it as well, and mine also started from the moment I woke up from surgery.  At that time is was incredible pain.  I have pain from #1 mastectomy, #2 immediate reconstruction issues, and #3 pain from lymph node dissection complications (severe refractory axillary webbing/cording).  I see that you made the choice not to reconstruct.  In retrospect, I should have done that, or gone with delayed reconstruction.  Actually, IMO the PS should never have shoved full direct implants in me after the 7 hour long and difficult mastectomy trying to remove two tumors against my chest wall and skin, which indicated that I would be a radiation patient.  My doctors also seem to be clueless to PMPS. 

  • 1openheart
    1openheart Member Posts: 250
    edited February 2012

    I have posted this question on a couple of other forums without many responses.  Maybe this is the place I need to be.   My UMX was in June.  About 2-3 mos into recovery I started having pain that seemed to originate from around the area of the stereotactic biopsy.  It hurt whenever I moved my arm, flexed my pec muscle or even just ran my hand over the skin of my breast.  I had a revision surgery/nipple construction at the end of Nov.  He removed the implant and made some modifications to the pocket and then replaced the implant.  The pain that I had been experiencing for months was gone....until two days ago.  It is back, just like it was before.  I have been seeing my myofascial PT weekly for months.  He is stumped too.  I also developed cording underneath both the reconstructed breast and my natural breast which we lifted during the second surgery.  My PS said "nerves".  He said he "cleaned up some adhesion's" when he went back in in Nov.  I'm seeing my onc. tomorrow.  Going to get her take on this.  What do you ladies think?  

  • kriserts
    kriserts Member Posts: 61
    edited February 2012

    All I can say is that my physical therapist, who specializes in breast cancer paitients, says she sees patients all the time who complain of pain from the implants.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited February 2012

    1openheart:

    If you have nerve damage that is causing your pain, you should really talk to the surgeon who removed your breasts, not the PS. Just from reading posts online for over a year now, it seems like for the most part, plastic surgeons are less likely to help with the pain as opposed to the general or breast surgeons. Maybe your oncologist will be able to help as well. Be specific about the type of pain and the severity about it. I described in great detail my pain to my doctors so they could understand and treat it most effectively.

    There are a number of medications that work for nerve damage. Basically what I have learned about my nerve damage is that when the nerves are damaged, they do not communicate the correct signals to the brain. One example for me is that touch can feel like searing pain or burning. The nerves can also be hypersensitive.

     I have been told that cording and scar tissue adhesions can come back over time. I was in occupational therapy for six months, despite doing all my exercises and stretching. I have been out of OT for about five months or so and I can feel my chest scars tightening up again.

    Please let us know what  you find out. I hope someone can figure it out and help you. If not, perhaps a pain clinic consultation would be good. I see a pain doctor for pain management regulary.

  • 1openheart
    1openheart Member Posts: 250
    edited February 2012

    Thank you Cinnamon for writing back.  I saw my onc. last week and she did not have anything new to offer me. Calling my breast surgeon is a good idea.  I have a great relationship with him and I'm sure he would be sympathetic and helpful.  And next week I am back in the PS's office for my tattoo, so hopefully I can talk to him then too.  

    I really don't want to have to take the nerve pain drugs unless I absolutely have to.  My DH tried both Gabypantin and Lyrica for sciatica pain and could not tolerate the SEs.  I know that does not mean that I would have the same problems, but reading the scare sheets that come with those drugs is enough to make you want to live with the pain.  I have the same kind of searing, burning pain sometimes when I run my hand across the area where the bx was.  I'm just so ready for things to be normal again and really pissed because they are not.  Patience, Cathy, patience. 

  • vicky3blum
    vicky3blum Member Posts: 19
    edited February 2012

    my son has a delilibating neurological condition.  they believe it is related to his tourettes [which is always related to some form of brain damage]  his brain signals to his body that his nerves are under accute attack.  he has had months on end where he would pass out hundreds of times a day from the pain.  accupuncture sometimes controlled it a bit.  we tried everything, even goingoutside the country, spending every dime we had and then some.   then we tried mmj [ my son was second minor in state to receive the pink card] that helped alot for about 3 years but then stopped helping.  every day he was begging me to help him die.  anyway, after alot of online research, i asked the doctor about nortryptaline .  probablt it has already been mentioned in this thread, but thought i would mention it just in case. it is actually an anti-depressant. since taking it my son's pains have reduced 80 to 90 percent.  has anyone tried this. for us it has been no less than a miracle[ of course we start planning on a somewhat normal life for him and 2 weeks later i get BC. and we wind up homeless.[ we will have a place to stay but we will miss our home of the past 12 years]  I keep trying to remind myself that if things turn out well after my mastectomy and my son keeps doing alright, everything else is just a piece of cake.

  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012

    I am just three weeks post-op BMX - but I seem to feel more discomfort now then right after surgery.  Is this normal...I get the tightness and the pain in the area of the breast where the cancer was...the right breast does not hurt as much as there was nothing in that breast except calcification...I am so worried now that this discomfort will last.  At what point would you think it would be a chronic issue. 

  • 1openheart
    1openheart Member Posts: 250
    edited February 2012

    Barbie.... my breast pain is also right where my DCIS was biopsied.  Weird.  I am also having the rib tenderness and cording, but that is a new thing.  Since there is no tissue in that breast, only an implant it makes sense to me that it is either adhesions or nerves trying to figure out what to do with themselves. Wish I could get some answers and some relief.  

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited February 2012

    Vicki3 - nortriptylin worked wonders for my PMPS!!! I took it for 6 months and was slow able to wean off it...after almost 2 years of suffering.  I really wish doctors would actually acknowledge our pain...

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited February 2012

    barbie!  i followed you here from your bio.... Did you read this thread from the beginning?   The women on here sound like they are or have gone through the same thing.....

    Get everything checked out....always ask questions with your team!   

    I was just checking up on you, since you posted on the older women thread...These gals should be able to help...Thinking of you.....

  • katiejean
    katiejean Member Posts: 1
    edited February 2012

    First of all let me say I am so very sorry to read about so many of you suffering so much from mastectomy pain/nerve damage. Just when I think I'm going nuts with little twinges and weird feelings I get online looking for answers and find not only am I not alone, but sadly there are situations much worse than mine and I need to be thankful for what I have/do not have. My sincere compassions are extended to you all!



    As you can see from my siggy, I am nearly 8 years out from my surgery and although it has not been a walk in the park it has not been unbearable. I do remember feeling like a mac truck had hit me upon awakening from surgery. And an idiot cna had the nerve to ask me "what happened to me?" I had the mental capacity to roar (somewhat weakly I might add) "WHAT DO YOU MEAN WHAT HAPPENED TO ME? Can you not read my chart? I got hit by a damn truck! Ripped my boob off!"

    Hahahahaha....needless to say, that poor cna got assigned to another patient. Hehe....



    Anyway, after that I did stay on some pain meds but I can't to Morphine or any of it's derivatives so I weaned off rather quickly. Maybe a week at the most. The drains were el yucko. But once I could take a shower I was very religious about doing the stretching exercises my surgeon had instructed me to do. He was very pleased with my range of motion.



    I never took any meds again after that initial week. I really had no sensation at all in the area until more recently. I couldn't feel anything-every once in awhile a weird itch or tingle but nothing drastic. Every now and then (like every few months) I will get a charley horse type cramp that seizes up the area. It hurts like hell. But it goes away just like any type of cramp.



    I used to get some odd shooting pains throughout the area but I don't anymore. I workout a lot (although I have never been able to shed the extra 20lbs I put on during chemo to save my neck but that's another topic) But when I do push ups I am very very weak and ohhhhh the pain later is very intense. But I want so badly to strengthen those muscles! I havent had reconstruction and want to very badly but want to be in good shape to do it. I am very scared about that but that too is another topic.



    Recently, I've developed a different pain near my mastectomy scar. It's closer to the middle and it's just a pulling type sensation. I've been doing more upper body weight lifting and I'm wondering if it isn't that cording or something that has been discussed here. I tend to develop very thick scar tissue anywhere my body is cut/wounded and I wonder if that is what it is. I am deathly afraid of a scar recurrence. Since the feeling is close to the middle of my chest-on the end of the scar, not close to the original tumor at all, I'm wondering if maybe the nerve endings are healing slowly and allowing me to feel more of the tightness than I did before. When I touch the area I still cannot feel anything it's like touching someone else. It's all very weird and I hate it. But I am thankful to be alive so I deal with it.



    I will post my recon questions and fears somewhere else but I wanted to let anyone know going through this that it does get better with time, but never truly goes away. I'm sorry I'm rather rambly...you all will have to forgive me as I'm digging up memories to share since my surgery was so long ago. I also wanted to mention when I'm pms-ing and my goodie boob hurts from hormones the mastectomy area aches then too. And also when the weather changes, the whole area aches. And in winter when it's cold I feel achey but luckily here where I live it's not unbearable.



    That fat injecting procedure sounds marvelous! I have lots to spare! And I am so afraid of surgery again.....

  • binney4
    binney4 Member Posts: 1,466
    edited February 2012

    Katiejean, welcome to BreastCancer.org!Smile Thanks for sharing your journey with us. I read your bio as well and must say your story has been a dramatic one! Brava for you!

    I'm thinking you might want to consider asking for a referral from any doctor on your team to a well-trained lymphedema PT. S/he can help in lots of ways, but especially in evaluating your new chest discomfort and guiding you safely toward strenghtening your arms and shoulders. You may not be aware that chest lymphedema is possible without any swelling in your arms at all (it is actually called truncal lymphedema). It would definitely be exacerbated by weight-bearing exercises that are not started gradually and increased very slowly, and by weather changes as well. Feelings of tightness and pulling are possible signs of it. In many cases pain can be intense and difficult to control. Here's more information about it:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Here's how to find a well-trained lymphedema therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Doctors can be slow to recognize or diagnose truncal lymphedema, so it pays to check it out with a therapist. Call and talk to any you might be thinking of seeing, and ask about their experience with truncal lymphedema and their willingness to work with you on strength training.

    Again, welcome -- hoping you'll find information, encouragement and caring here is vast amounts!

    Be well,
    Binney

  • PinkHeart
    PinkHeart Member Posts: 271
    edited February 2012

    Ditto on the chest wall lymphedema.  Couldn't even get the PTs to recognize it until I did reasearch myself.  However, they did recognze my severy axillary cording problem.  My PCP only seemed to only know about arm lymphedema, too.  Even though he is an outstanding doctor, he was clueless on what the axillary cording was that I had to explain to him. 

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited February 2012
    HI, My pain dr. is considering implanting the Medtronic Neurostimulation in my spine for PMPS. I was wondering if anyone else has had that done to treat the pain from PMPS?

    I am leery of implanting it into my spine and the complications that could occur. I have not had much luck with my surgeries with complications, and pain, etc.

    I would like to know if anyone tried it and how it went for them, bad and good.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited February 2012

    O2bhealthy: I have found doctors who care and acknowledge pmps. My breast surgeon didn't, but I am not totally sure I explained just how bad my pain was. It took a new medical internist to give me a referral to the local Pain Clinic. I have found the pain dr.s wonderful! They really work at finding the best and most effective treatments for my pain. I would be lost without them.

    One of my dr.s ordered amytriptilyne, an anti-depressent for pain and sleeping at night. I can't go too high on a doasage of ad because I am bipolar and too much anti depressent in my system can make me manic.

  • mlp730
    mlp730 Member Posts: 27
    edited February 2012

    I am currently taking Lyrica and Cymbalta. I just saw another PS for my fifth "second" opinion and he asked if I ever tried Neurontin or elavil. In reading about these drugs, it seems like Neurontin and Lyrica are in the same family as well as Cymbalta and Elavil. Has anyone who has tried these drugs found success and which ones seemed to work better?

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited March 2012

    I am on Neurontin's generic, Gabapentin. I have a very severe case of pmps and it doesn't take away all the pain , but when I went off it once, I could sure tell the difference in pain level increase. I am now at 2100 mg per day of it. My pain dr. wanted me to take more, but I can't tolerate it. There is also an anti-depressent called Amitriptilyne that helps some with pain. My pain dr. also threw in a muscle relaxer at night (I could take it more if I wanted to). I can't remember the name of it right now but it is in one of my other posts in this thread.

     I have been trying to get the moderators to make PMPS its own forum, to no avail. So far all they have done is posted it to the top of the surgery forum. It would be so much easier for people to find information already written down if PMPS was on its own.This is just too much information for people to sift through to find the answers they are looking for. I wish more women could help present reasons why PMPS should be its own forum. To me, it feels like this side effect was swept under the rug for so long and still many doctors don't take this seriously that bc.org kind of won't recognize as it does LE which has its own forum.

    mlp730: I take it you are having pain issues. I do not know ,your story but just from reading posts on here, it seems like PS's are not as good at dealing with pmps as breast surgeons (for the most part, I know not all are).  I have seen three excellent pain drs at my local pain clinic. They have been wonderful at trying different meds and treatments for my pmps.

    I don't have implants, I didn't have reconstruction so I don't know what that kind of pain is if  you have that.

  • mlp730
    mlp730 Member Posts: 27
    edited March 2012

    2100 mg a day??? Are you serious? I take 25 mg 2xd of Lyrica!

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
    edited March 2012

    Yeah, mine is realy bad. One of the worst cases of PMPS the clinic has seen. I used to get nerve block shots to the neck but they only gave about two weeks of relief. Then they switched to getting iv bags of lidocain straight to the vein. Those are losing their effectiveness now and they are talking about getting a spinal implant for pain management. I am not too sure I want that done.

  • Deeds
    Deeds Member Posts: 43
    edited March 2012

    Pink Heart: what have you decided to do about the axillary cording, since your last post?  Other than the obvious stretching?

  • 1openheart
    1openheart Member Posts: 250
    edited March 2012
    I'm not sure where to ask this question.  It may even be a very stupid question, but I am really tired of hurting all the time.    Has anyone tried Salonpas pain relief patches for post mastectomy breast pain?  They are small, adhesive patches that contain menthol, camphor and aspirin.  I did a google search and out of 81 reviews on Amazon,  61 were for 5 stars.  Of course, most of these folks were using them on their backs, necks, knees etc...  I don't think there should be any reason not to try it, but I wonder.I have a cohesive silicon implant in that side and i have pretty much constant pain in the upper outer quadrant....right where the cancer and biopsy were.  I seem to have two levels of pain.  Superficial nerve like pain and then a deeper pain that happens when I move my arm.  I am seeing a physical therapist and an acupuncturist and so far, I am not getting much relief.So, anybody have an thoughts about me trying this product?  Thank you! I copied and pasted this from a thread that I started and someone suggested that I post on this thread instead.   
  • kriserts
    kriserts Member Posts: 61
    edited March 2012

    1openheart, I haven't tried those patches, but my pain doc gave me lidocaine patches and cream. Helped to sort of numb the skin. 

    I had 2 kinds of pain, too. A wonky nerve, and pain from the implant. Doc said the nerve was sort of bunched up at the end. He suggested a couple treatments, including an SSRI, but I just waited and after a couple years and it died down. The other pain was from the implant, and that's died down, too, although it was 2-3 years as well.

    So, net/net, I liked the patches and the cream, they might be worth looking into, but for me they weren't a total cure.

  • PinkHeart
    PinkHeart Member Posts: 271
    edited March 2012

    Deeds ~

    I've been through hell and back dealing with the cording, and a bunch of worthless opinions from PSs that, IMO, are more interested in doing mommy makeovers, breast aug, etc, on cash-carrying happy patients than dealing with BC patients.

    Anyway, finally found a good PS I can trust (and that is kind enough to email and talk on phone). I am tentatively scheduled for surgery on April 27th, at Johns Hopkins.  PS will excise the cording in right axilla, work on right radiated breast releasing scar tissue and contracture and make the pocket bigger to (hopefully) alleviate pain, and on left breast fix cosmetic issues (waves, ripples, & lumps) and recreate IMF (fold under breast) that got obliterated from the massive hematoma that happened 5 days post surgery and had to be surgically reopened and evacuated. 

    He would have liked (and me, too) to have done microsurgery by transplanting skin from my abdomen (no fat because I'm too thin) to replace the skin on my radiated breast to cover implant.  The skin on the outside actually looks great -- it's just the inside muscle that's cooked.  The reason why he is just doing "conservative" surgery is I have heart problems . . . . 

    I"m trying to be postive that this surgery won't be as bad as last July with initial surgery.  It will only be 2-3 hours long and he said I might have one drain (which is a happy thought after having 6 drains after first surgery).  He said it would normally be out patient but he is going to keep me over one night to monitor heart.

    I hate having to go through more pain to hope to alleviate pain, but I won't give up.  I will start PT immediately after the surgery.  I still have nerve pain, and my shoulder is getting wimpy.  My case is currently being reviewed by a "hand to shoulder" orthopedic surgeon so I may have an appointment with him before or after surgery.   PS suggested having shoulder doc on board (locally). 

    Peace & Blessings!

  • 1openheart
    1openheart Member Posts: 250
    edited March 2012

    Wow, Pinkheart....good luck with your surgery.  That is a lot to go through.  I am full of hope that you will find ease and be pain free after this is all behind you.  

    I have lots of cording, but so far, mine is not axillary cording.  Mine is in my trunk and into abdomen.  But, I have nervy type pain down my arm and into my hand.  I'm really tired of hurting all the time, so I think I can relate somewhat to what you are experiencing.  

    Again best of luck.  Let us know how it all goes. 

  • 1openheart
    1openheart Member Posts: 250
    edited March 2012

    kriserts...thank you for the encouraging words.  I hate to think it will take that long for things to settle down, but later is better than never!

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