Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Post Mastectomy Pain Syndrome (PMPS)

Options
1484951535460

Comments

  • Tasal
    Tasal Member Posts: 6
    edited November 2016
    Options

    Hi ladies- I recently found a doctor willing to try to resolve my PMPS and I had a nerve block done performed on one side. Though it did relieve some of the intense needles in my nipple sensation, stabbings, etc. it did not address my pain with movement, back and chest burning. I'm curious if anyone else on here has tried a nerve block and had any success with the procedure? I go back in on Thursday to meet about what to try with my left side and am scheduled to do another trial on Monday. I found this doctor by reading articles on his work with others for various types of relief due to amputation, fibro, etc. but I'm his first PMPS patient. Nothing like being the guinea pig- but if it gets me some relief, I'll do it!

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
    Options

    Lisey: I really appreciated the article you posted and shared it in another thread. I hope the moderators post it in the articles they send out.

  • Soniatoronto
    Soniatoronto Member Posts: 18
    edited November 2016
    Options

    Just to remind you, on Facebook we have a support group, named Surviving Post Mastectomy Pain (PMPS)

    https://www.facebook.com/groups/759940397434876/

    If you wish please ask to join


  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
    Options

    Soniatoront...The Facebook group is an excellent resource. Not sure why there is a much more active participation in the discussions about pain on that platform than here. It is evident from just browsing this PPMS thread that posts are infrequent. I highly recommend the Facebook group.

  • Unknown
    edited November 2016
    Options

    soniatoronto, regarding the FB group

    I find when i initiate a post there it shows up on my wall? and so all my " friends" can read it which i didn't want to happen :( since most of them don't have a clue what we go through unfortunately. Is there a way to keep it private? If i respond to someone elses post it doesn't show.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited November 2016
    Options

    notbuyingit...The FB page is private, it will show on your wall, but it's only visible to you and to other members of the group, your friends that are not members of the group can not see it. I even checked to make sure by logging in as my husband, I couldnt seeking of the posts for the group.

    Linda

  • OncoWarrior
    OncoWarrior Member Posts: 3,326
    edited November 2016
    Options

    Hello. I found this page by accident. Not sure if I belong here as my pain is not debilitating and I have not been officially diagnosed with the PMPS. Yesterday was my four year anniversary of BMX. No recon. I have thought that the pain and some numbness combined were just normal because of all the nerves that had been cut in the process. It is a nuisance, some days are worse than others.

    Nerdy natasha

  • Katemom
    Katemom Member Posts: 4
    edited November 2016
    Options

    Hello all,


    I just found this group and am so happy. I had a double masectomy December 2015 (alst year) and reconstruction in July. I've been able to resume swimming and spinning but I do it in pain. I have the constant "iron bra" feeling and the weird itches that do not go away. I saw the recommended FB page (thank you for posting) and will join. Just nice to know I am not alone (all my friends and family think I should be over it b/c I have nice new boobs).

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited December 2016
    Options

    I have been going to an osteopathic doctor for about a year to help ease my pain. He does osteopathic adjustments that are amazingly gentle and effective. He said some of my pain is due to scar tissue, since having a double mastectomy involves removal of a lot of tissue and the scar tissue then grows into the tissue that remains. I am still on neurontin however I only need a half Tramadol pill now when I need to calm things down. My crankiness is easing too, and my patience is back. I had never heard of this technique so I wanted to share my experience. Since I feel I have somewhere to turn for gentle, respectful pain management, I am calmer and can focus on modifying how I move, how I do things and lift things, so I don't trigger pain

  • Warrior4sararyan
    Warrior4sararyan Member Posts: 5
    edited January 2017
    Options

    I had a BMX in 9/16 and had my exchange and implants 12/16. I had a follow up with my PS and was asking how long the pain is going to last. He said could be up to a year and a half. He gave me he OK to start working out 3 weeks from my last surgery, I did the elliptical machine,stretching and very light weights. I will begin the Live Strong program at the YMCA tomorrow. I am trying to build up my upper arm strength and stamina as I will be returning to work soon and it is a very physically demanding job. I feel like I have a lot of scar tissue. I have a dull ache in both breast. My left breast has a spot that is bumpy and will give me shooting pains off and on. The PS said this could be nerve damage as well as scar tissue. I am taking Tramadal as advil does nothing. I have tried ice packs. Nothing seems to help. I am hoping with my workouts that all the movement will help with the scar tissue. There is so much I did not know when all this happened. I just try to move forward,gather information,and make smart choices and become stronger and healthier!

    I don't know if it helps but I rub essential oil mixture with vitamin E oil on my scars and massage my "mounds" and to me it is soothing.

  • LoriWNY
    LoriWNY Member Posts: 178
    edited January 2017
    Options

    Warrior--I would ask your breast surgeon/plastic surgeon for a referral to a physical therapist and preferably one who specializes or has experience with mastectomy patients. I underwent several PT sessions after my BMX and it was EXTREMELY helpful! Yoga and swimming were/are also very helpful to me to help alleviate the tight sensation.

  • ginger48
    ginger48 Member Posts: 1,437
    edited January 2017
    Options

    Warrior- I agree about PT being helpful. Mine did myofascial release which really helped. I also felt tramadal did nothing. I take neurontin for nerve pain

  • woodstock99
    woodstock99 Member Posts: 80
    edited January 2017
    Options

    Hi All -

    Yoga question:

    I am just about one year (1/12) out post-BMX no-recon and did a few private yoga lessons last Fall which I really enjoyed and felt benefited me physically and emotionally but it was too costly to continue solo but the teacher obviously knew of my condition and focused the lessons on predominantly stretching. I have been going to the gym since march and doing treadmill and some machines and the Power Plate (and swam during the summer some) but my body is telling me it misses the yoga.

    Most of the restorative or classes for me are during the week during the day but I work FT. I found one that is given on Sunday afternoon starting today that I may try. The owner told me at first this was a restorative class but then later said it is stretch class but to talk to the teacher before and let her know about any restrictions.

    Do you think this description sounds too challenging & if not, what should I tell the teacher?

    I am still having extreme tightness across the chest and into my armpits. I have a lot of excess skin under my left armpit and a dog ear on the rights die where my incisions end. They are not symmetrical.

    "Looking to maximize your athletic performance? Yoga for Athletes integrates movement, strength, balance and breath to help athletes excel, no matter what the sport. Movements specifically geared toward opening limited mobility areas like shoulders, hamstrings, and IT bands, will allow you to gain flexibility and ultimately move quicker and more safely during competition. We'll test your limited mobility areas before class and then work them throughout the hour. You'll see a huge improvement after just one class. You'll also learn to edge out competition with breath. A mindful breath practice is important for athletes to oxygenate during hard workouts and to keep calm and focused before and during competitions. If you're an athlete or just a tight body, this slow, deep stretch class is perfect for you!"

    Thanks.

  • woodstock99
    woodstock99 Member Posts: 80
    edited January 2017
    Options

    Also I do take one 300mg Neurontin before bed for pain but someone recently recommended I try this supplement. Nerve Shield.

    Does anyone see anything that might cause any issues taking?

    Thanks.


    Nerve Shield™ is a powerful formula that addresses multiple systems to promote healthy nerve function*. Nerve Shield™ provides nutrients that:

    • support a healthy myelin sheath and overall nerve structure*
    • possess antioxidant properties*
    • support healthy immune system function*
    • support healthy circulation*

    Nerve Shield™ is a powerful, comprehensive combination of herbs, amino acids, vitamins, and other nutrients that target your peripheral nervous system.*

    KEY INGREDIENTS

    B-Vitamins are important to the structural integrity of lipids found in the myelin sheath.*

    Alpha Lipoic Acid supports normal nerve function.*

    Acetyl L-Carnitine supports healthy nerve fiber structure.*

    Phosphatidyl Choline contains lipids – compounds that comprise 76% of the myelin sheath.*

    Huang Bai and Cang Zhu, both traditional herbs native to China, facilitate the movement of qi throughout the body.*

    Chinese Skullcap & Turmeric have potent antioxidant properties and promote healthy immune system function.*

  • LoriWNY
    LoriWNY Member Posts: 178
    edited January 2017
    Options

    Balthus--On its face, the yoga class description you mentioned does sound vigorous and challenging, but I have taken may yoga classes from several different instructors and have found that one instructor's description varies widely from another. Why not take one or two of these classes on a trial basis and if it is not for you, then find another instructor or another class. There are also lots of yoga DVD's and even yoga sessions online/YouTube that you can experiment with to find what you like and what works for you! Right now, I attend yoga classes 5 days per week with 4 different instructors--they are all different and I get something great out of every class--both physically and mentally.

  • woodstock99
    woodstock99 Member Posts: 80
    edited January 2017
    Options

    LotiWNY - I actually did not do the class. I got to the place and when I saw that most of the people waiting for the was were at least half my age I decided it was not the right class for me. I will search for some YouTube videos and will talk to my gym to request that they do a gentle or "classics" class on a weekend or evening. Perhaps others may have been interested as well. Thanks.

  • MsKiKi17
    MsKiKi17 Member Posts: 2
    edited January 2017
    Options

    Hello all. I am just finding this post. I didn't know there was a name for what I am experiencing. My surgery was last September. I have tissue expanders in now and I am planning on getting one more fill. The exchange will take place 2-3 months after the last TE fill. The pain initially was unbearable and I went through a lot of pain medication. If I had known the pain was going to be that/this bad I would have opted to have mastectomies without reconstruction. The nerve pain drives me crazy. I will take Tylenol or Ibuprofen occasionally. It would be nice to find something that really helps with the pain.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited January 2017
    Options

    Hi Ladies-

    I am so happy to have found a place to vent my frustration to people who understand and literally feel this pain that I do.

    I have BRCA2 mutation and had ovarian cancer in 2009 and recurred in 2014.

    In July 2013, I had a prophylactic double mastectomy with FLAP reconstruction. To make a very long story shorter - it was only 8 months after surgery, I had the second abdominal cancer surgery and a second hernia repair. I have had 34 rounds of chemo, for cancer treatment and in a clinical vaccine trial.

    I have not had ONE painfree moment since the breast surgery. My PS never discussed potential pain issues, regarding all of my surgeries and scar tissue when he pushed for the FLAP and my "free" tummy tuck. Nothing is free I have learned.

    After a breast rehab physician diagnosed breast and abdominal lymphedema, he said " there is no such thing" and offered liposuction - great idea to inflame an already inflamed area. I never saw him again. I add he is Chief of PS and I have read articles by him on this website, which is what motivated me to write this - as he never mentions the remotest possibility of pain complications connected particularly with the FLAP.

    Since the fall of 2013, I have tried everything, except a nerve block - I have constant pain, pressure, tightness, etc from my shoulders to my fake belly button. Even in my sleep.

    Ironically, my breasts look great and my abdomen is very flat- I certainly don't regret the mastectomy, but if he hadn't pushed for the FLAP, I wouldn't have all the abdominal issues.

    Pain killers, Cymbalta, neutontin (1800 mg) do nothing. Currently, I am having PT for abdominal pain, Lymphedema therapy, ( she uses massage, lights and the Lymph Star machine). I do self massage, an entire stretching program, see a chiropractor and get Reiki massage on a regular basis.

    I see an Integrative MD and take immune building supplements and have taken a Mindfulness course to deal with this stress.

    I am so angry, because it isn't the ovarian cancer right now that interferes everyday with my quality of life, but the ego of my PS who never even mentioned that all the abdominal surgeries could impact my long range pain issues. I am sure he learned about connective tissue pain in med school.

    After surgery, he actually seemed angry I had so much scar tissue it was like " ploughing through corn rows.'

    The Chief of Pain at the University of Pennsylvania said simply all the pain is from all the cutting. He prescribed Lidoderm patches, which do not help and discussed Lyrica and Methadone. No thank you.

    Thanks to all of you who took the time to read this book :)

    All suggestions greatly welcomed.

    Barbara




  • annie7216
    annie7216 Member Posts: 30
    edited January 2017
    Options

    Hi everyone

    I've have BMX 7 years ago and have always had the "iron bra" feeling, but lately the sensation has changed. It feels more like a muscle pull, almost like a charlie horse. It comes and goes. Sometimes it feels like a burning sensation. It's mainly on my bc side and occurs mostly with movement. Sometimes it hurts to lay on that breast as well. I had my BS yearly follow-up yesterday so I'm not concerned that it's a recurrence, but I'm wondering if it's either PMPS or capsular contraction. Seven years past bmx seems too long ago for it to be PMPS. I asked my BS about CC and she said I would know if I had it. Would I? I tend to tolerate pain pretty well. Thanks in advance.

  • minustwo
    minustwo Member Posts: 13,154
    edited January 2017
    Options

    annie - or it could be breast or truncal lymphedema. Can you get a referral to a trained LE/PT? Here's a great site that you may find useful.

    http://www.stepup-speakout.org/


  • nash
    nash Member Posts: 146
    edited January 2017
    Options

    Barbara, did you have DIEP or did you have TRAM? Not that it matters as you're in the same boat I am from my lat dorsi flap reconstruction. Just curious if you had your muscle moved or not.

    But yes, it's all connective tissue issues, as far as I can tell. My PS likes to blame things on nerve damage, which may partially be the case, but I had a parathorasic nerve block before my revision surgery recently, and it didn't do anything to take away the tightness and pulling I have in my side, front and back.

    I've tried everything you've mentioned to no avail. The only other things I'd suggest to you are Trigger Point Injections, MFR and Graston for scar tissue.

    I started the TPIs through Pain Clinic recently, and they do help a bit. The Graston helped break down the scar on my back.

    For MFR, I have had some degree of success with therapeutic endermologie and acupuncture/cupping. Also I've just started soft tissue therapy (similar to the ART technique) with a chiropractor who has experience with lat flap mishaps. He's kind of my last hope, so fingers crossed.

    I'm a competitive athlete, and my PS assured me the lat dorsi surgery would be a 8 week recovery and all would be well. She seems mystified by my issues, really doesn't want to listen to my specific complaints, and keeps writing everything off as PMPS, but completely nerve based. She poo-poos anything dealing with connective tissue issues (swelling, fascia disruption, trigger points).

    I fired my onc after he told me my persistent problems were b/c my mind "wasn't accepting the surgery.". Asshole.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited January 2017
    Options
    Hi- it's so frustrating when the PS are so arrogant and egotistical they can't 'accept' a real pain issue. Mine said breast Lymphedema doesn't exist.

    I had a TRAM Flap.

    My PS actually did a Q & A on this website, never mentioning this could happen, especially for me, as I already had had one huge ovarian cancer surgery. I don't even think he took the time to even read my medical history that well.

    I tried ' dry needling' which is having needles injected in my back, in specific trigger points( by an MD).


    I just made an appt with a PT who exclusively does myo-fascia release therapy. In addition to 2x a week Lymphedema therapy and Grafston therapy on my abdominal scar tissue
    by a pelvic floor therapist. I also try to see my chiropractor once every week.

    I notice you live in CA. My daughter lives in LA and I got a medical marijuana card, as I visit her a lot.

    I had read about cannabis oil for pain, side affects and reducing tumor cells. It immediately dropped my blood pressure and when I use it, I don't need anything to help me sleep. Who knows what it does for cancer cells ? But, it can't hurt.

    Shockingly, at night, when I am in excruciating pain - it helps!!! No meds have touched my pain.

    Penna just legalized medical marijuana, but it is not available yet here.

    I also bought topical mentholated cannabis creams with Arnica, etc. to try. They also help a little.

    I have never been an athlete, but I like to walk a lot. Even walking is so painful. My PS told me I could run a marathon in 10 weeks after. ( of course I never have ever haha)
    When was your surgery ?

    I have never spoken to anyone who really understands how debilitating and painful this is.

    Thank you. Good luck with your new treatment.

    Barbara
  • nash
    nash Member Posts: 146
    edited January 2017
    Options

    Hi, Barbara. My surgery was May 2015. I had a lumpectomy in 2007, then recurred, thus the need for the lat flap.

    I did try medical MJ. I tried some sublingual high CBD spray, which didn't really help. Tried a TCH edible which just made me nauseous and dizzy. Tried the topical mj, which didn't help either. I'm totally on board with medical mj, but I just can't seem to find the right dose or mode of ingestion. I'm glad it's helped you, though!

    Yes, it totally helps to talk to someone who "gets it". I hope the MFR helps you. Feel free to PM me any time.


  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
    Options

    This topic has not been active for quite a while yet I suspect that there are women out there who have been experiencing PMPS but were not aware of this thread due to inactivity. You are not alone. I've had PMPS since my surgery in April of 2015. Recently, I've been wearing the Expand a Band Breast Binder and find that it does help on some days to reduce the electrical shock feelings even though the extreme tightness and generalized pain remains. I continue taking Neurontin 900-1200 mgs daily and an occasional Ibuprofen. There are thousands of women who have PMPS or Chronic regional pain syndrome. Like lymphedema, it is a chronic condition, but I think because PMPS is a pain condition and not visually confirmed, it is too often ignored. You are not alone and as Nash posted in January, others of us out here 'get it.'

  • minustwo
    minustwo Member Posts: 13,154
    edited March 2017
    Options

    Actually Magic, there are probably quite a few of us who have this listed on our favorites. I really can't attribute ongoing pain to PMPS anymore. I've pinpointed my problems as Lymphadema and CIPN (chemo induced peripheral neuropathy) Still I'm really glad to see the posts & the bump.

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
    Options

    Minustwo... thanks for your post. Although cancer treatments save lives the impacts of cancer treatment in the form of the neurotoxic effects of chemo and or radiation are well known to scientists and patients, except that the latter hopes to be spared those side effects. Being a member of this on-line community is one of the most positive places to find that intersection of science and art where individual human beings share stories that both reflect and challenge today's science.. Thanks for sharing your stories.

  • minustwo
    minustwo Member Posts: 13,154
    edited March 2017
    Options

    And you Magic. This thread is well worth bumping. Love your avatar.

  • Falconer
    Falconer Member Posts: 801
    edited March 2017
    Options

    magic- thanks for the info about expand a band binder. Did insurance cover it? I see my BS on Monday, so I might ask her to prescribe it if insurance takes care of it

  • everymoment
    everymoment Member Posts: 6,656
    edited March 2017
    Options

    Falconer...I did not think about insurance coverage. Let me know what you find out. It has been nearly 2 years since my BLM and I only see me primary care doc who oversees my PMPS problems.

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

    I love and read this topic, which is also in my favorites. I don't do Facebook, I just can't, sorry. So I am very glad that women post here. I take nuerontin 300#'s 3X day, and also opoids for pmps, and also for other problems I have had since chemo and surgery. I move a lot and was really strong and in shape before this, don't know if I'll ever get all the way as strong s i used to be five years ago, plus I am getting older, and not working a physical, VERY physical job that I used to do... I also use this creme called topricin that I use very liberally on what ever is hurting. Plus I take a 800 mil motrin once daily. If I do all these things then lie down, which I do once daily before evening movie time, for one HOUR I can feel almost no pain... a blessed moment that keeps me sane. It's like theres this horrible internal itch that just doesn't stop