Post Mastectomy Pain Syndrome (PMPS)
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Daisy, when you said you have pain down your side it reminded me of AnneW. She had terrible pain down her side. Her pain was fixed by surgery. Maybe you could PM her for details.
I took oxicodone every night for a year. Same as Hip, I would wait until 5:00 pm. When I ran out I switched to Larazapam at night so I could sleep. Even so, I didn't sleep more than a couple hours at a time for over a year and a half. The pain medicine was my only relief but I also hated taking it. Gradually over time I stopped taking it because I didn't need it.
PT made my nerve pain worse. Felt like a belt was looped under my arm and around my shoulder and pulled SO tight. Just thinking about it makes me cringe. A female massage therapist helped tremendously.I still see her every two weeks. She listens to me and started out very cautiously. Over time she has increased the pressure but still doesn't touch my upper chest. I never tried a male therapist but did try another woman who was too rough with my arm and I almost jumped off the table. She clearly didn't know what she was doing even though she told me she did.
Sorry you're in so much pain. I hope today is better. Love, Fog
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HI EVERYONE. I THINK OF YOU ALOT AND HOPE THE PAIN CAN SUBSIDE SOME. I HAVE BEEN IN CONSTANT PAIN FOR 2 1/2 YEARS. I WAS JUST WONDERING IF ANYBODY HAS THOUGHT ABOUT A CLASS ACTION LAWSUIT TO GET THEIR ATTENTION?!! I JUST WANT TO CHANGE THINGS SO OTHER WOMEN DO NOT NEED TO GO THROUGH ALL THE PAIN THAT WE SUFFER THROUGH. WHAT DO YOU THINK?
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A quick word about massage therapists...I use a guy, and have no qualms about being naked under the sheets. He does a very professional job of covering me. And as far as the amount of pressure he uses...he's not nearly as rough as some women I've been to. But it's MY job to tell him to back off the pressure, or add more, depending on what feels good (or bad!) to me. He can't read my mind, but is certainly in tune to when I wince.
TuffyBuffy, I'm not sure a class action lawsuit will get you anywhere. Is there a defective product? No. These are unusual post-op complications. I worked in a pain clinic once, and saw all sorts of pain syndromes following surgeries, from bunionectomies to knee scopes to failed back surgeries to hernia repairs. Any time an incision is made, nerves get injured. Why some people have worse outcomes than others is the great unknown. I agree we should all be told of the potential risks. But, if you were told that your mastectomy could result in a 1% (or whatever the going # is) chance that you'd be left with chronic pain, what would you do? I'd still have the surgery...I DID have the surgery. I got pain.
I wish there were answers. Educating docs is a step in the right direction.
Anne
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I want mine back too... I feel like I did a justservice to my body.
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I want mine back too... I feel like I did a diservice to my body.
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Hi everyone. Back from visiting our younger daughter in NYC. So wonderful to see her thriving there. You know how there are some people who just bring joy wherever they go? That's our baby.
I've been thinking about TuffyBuffy's class action lawsuit question for a couple of days. Actually several months ago someone else told me the only way to get "their attention" would be to file a class action law suit. I thought about it then, too, but rejected the idea. First, who are we going to sue? Second, I have a strong feeling that to bring about change will take a collaborative effort. AnneW makes a good point about education vs. legal action.
I think two simple things (ha ha simple, right?) are needed:
1. presurgery education about the risk of chronic pain. The risk is not small with research coming in around 45% of women reporting moderate to severe pain two years after surgery. Had I known there was such a high risk I may not have opted for a prohy mx on my left side.
2. pre-op and post-op physical therapy: Pre-op for establishing baselines for lymphadema and ROM and Post-op for regaining range of motion and strength, working on scar tissue, identifying lymphedema etc. I think here is where PMPS or chronic pain issues should be identified and referred to the appropriate specialist.
We are dealing, not only with cancer, but with a traumatic physical change. Both need treatment...it seems up to now the cancer has been the only focus. With early detection and genetic testing more women are being treated with surgery only,. So for us there is no post-op cancer treatment. Which equates to NO treatment at all. Leaving us with physical trauma and sometimes lost.
In a nutshell - education before surgery so we know the risks and physical therapy pre and post op to address physical changes.
Hey, it only took me two years of wandering around in a daze to get to that last sentence.
Love to all, Fog
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Fog, you're hitting the nail squarely on the head here. The education and pre/post PT should become the standard of care. I wonder how the advocacy groups, esp NBCC, would go about tackling this monumental project...
Anne
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I agree wholeheartedly, Fog!
And so..does education in this media-focused world start with going on Oprah?
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Hi Deeds, For some reason Oprah isn't returning my calls!!! I'm emailing (and getting supportive responses) with a couple of groups in Maine. I also sent out emails to some medical/cancer support people around the country asking them where to start. How do we make this change? It seems so simple and impossibly huge at the same time.
How do we make this happen? Any ideas? Can we do this together? Love and happy weekend!
ps. ny times article is in rewrite...long story....but will be better for it
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How about one of your local radio stations, to begin with? Are there any that have antennaes out for "special interest" groups, such as PMPS women?
Don't you just love the way we push all of the media responsibility off on you, Fog? You DO kind of stand out - head and shoulders - above some of us who aren't quite as gifted with words as you are, not to mention your unflagging enthusiasm to convince others...a real agent of change!
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I am actually kind of shy!!!! But I will do whatever it takes to change the standard of care. My PS in Boston says he will set up a meeting with one of their program directors for me. Not sure what that is exactly - better find out!
It's so interesting...half the people I contact about this respond with their own story or think I'm asking for help for myself. The other half totally get it and are on board.
Happy 4th to everyone. Enjoy!!! We're heading out to my sister's cottage on an island in Casco Bay this morning. Should be beautiful. Love to all, Fog
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Hi all, so I went to my pain Dr. It was not my regular Dr as he was at a conference. I wish I had known he was going so I could have asked him to speak on our behalf. Anyway, this new guy was very nice. I told him what his collegue had said, that nothing will help this kind of pain. He agreed. I was really surprised that 2 drs would agree on our topic of PMPS. I asked about fibromyalgia. He really didn't believe there was such a thing.........hello, I am living proof. He was nice and said he treats for the condition IF everything else has been ruled out. Ok ill buy that!! So he uped my meds and sent me on my way. So now that I have found 2 doctors who agree there is nothing I can do about it, im kinda happy. At least I can rest now. The search is over. I will do the best I can to live my life of pain. There is nothing more I can do. I have crossed off all the boxes.
Have a safe 4th Hipp
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Hipp - I talk to my brain every morning in the shower (yes, out loud!). This is what I say. "You are not done yet. You have work to do. You are doing a great job of healing and reconnecting the dots but you're not done yet." When we went away for a month I told my brain that it was okay to take a break now. I was really scared but I think this "brain vacation" was invaluable in my healing. It sounds like you need a brain vacation, too. Like you said - now you can rest. While you rest try to focus on what makes you happy. No more focusing on pain. Give yourself a month of treats. Little things like your favorite coffee, music, people. I know you'll begin to feel better.
AnneW - I looked at the NBCC's website. From what I can tell adjuvent care guidelines focus on cancer treatment. I can't find guidelines for care that address recovery from the treatment(s). Will continue research...thanks.
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Hmmm. Maybe it's time to encourage NBCC to branch out a little bit...
Anne
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HI ladies
I had lots of pain after bilat Mx with no reconstruction. I did get relief from a revision type surgery by a PS. I have started yoga this past month. It is great. The medical center has a fitness center that give free classes twice a week for all cancer survivors and patients. It is great. If you have a chance to try this I would recomend it. Many centers do such classes, it is yoga with training wheels, but helps with pain, mind & body.
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I am playing when it is not so hot. I started back 4 -6 months have surgery but it took awhile to really take a good full swing. My swing changed and I had to get use to it but am so glad I can play. That was when i felt like things were getting back to normal. The yoga the past few weeks has been great. I am looking to add extra classes into my week.
Go to a driving range with say a 8 iron and just swing a little. I also have a putting green in my yard andd started putting within weeks of surgery,
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Post Mastectomy/Lumpectomy Pain Syndrome is a real problem. Although its sharp stabs of pain superimposed on feelings of an aching, burning tightness can also occur after lumpectomy, post-mastectomy pain syndrome-usually abbreviated as PMP-is the phenomenon's official name. While it can make an agony of the lightest touch or slightest movement, there are clinicians who doubt that the phenomenon exists. As a certified lymphedema therapist with 30 years experience (Casley-Smith trained, LANA certified), I treat many people with this EVEN though there is NO swelling. It can be relieved with manual lymph drainage, scapulothoracic rhythm exercises, myofascial release techniques, low level laser therapy, postural exercises and truncal stretches.
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I got a newsletter from LBBC (Living Beyond Breast Cancer) yesterday. There was a Q&A type article on chronic pain, and they mentioned PMP. But only to acknowledge that it exists, is related to nerves being cut during surgery, and that lidoderm patches may help relieve the pain for many people.
I was disappointed. I wanted so much more, but realize that the format was not geared for that. At least it was mentioned...
Anne
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I was perscribed these patches. I am a fair skined redhead......................hello..After an hour I had to rip them off.
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Some people are very sensitive to adhesives. Sorry it didn't work for you. I've prescribed them a hundred times, and rarely saw a reaction or irritation. For some people, they became "magic paper" they worked so well. For others--a waste of money.
Anne
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Sweet ladies in pain.... xxxooo
I hope your week is without pain.... I just do!
I am praying for this now!
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Laura, how are you? Is your lymphedema bothering you in this heat? Thank you for your prayers.You are in mine as well.
Yesterday I finished rewriting my article (a friend who's a journalist suggested some major organizational changes) and I sent it off to the pain doc in Boston for his approval. As soon as I hear from him, I'll submit to the NY Times. Ever feel like you're walking through quicksand? Hard to make progress but little steps...we'll get there.
AnneW, it's progress that LBBC mentioned chronic pain. I know I didn't read anything about it and I was searching for over a year. Does lidoderm work by numbing the skin? I wonder if it would stop the constant shocks I get on my left side. Maybe I'll try it.
July 31st is my 2 year anniversary (I count from surgery day because that's when this pain started). I'm continuing to do my exercises despite bad days. My bad days are nothing compared to the bad days I used to have so I'm pushing ahead...afraid to lose ground. If 50% of us with chronic pain get better I want to stack the deck in my favor.
In the meantime, it's a gorgeous Maine morning, warm and sunny. I'm drinking an iced coffee and thinking about you all. Getting stronger for the fight ahead. Like a jet at the end of the run way waiting to take off, engines on full throttle. That's how I feel and every day I'm closer to taking off the brake. Hold onto your hats!!! Love, Fog
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Hey Fog, thats good news about the article. I can't wait till its published so I can send it to my breast surgeon. There is a breast cancer conference in Tampa every October. I went to it last year. It was just ok. The speakers were good, but the rest was average/\. I want to email my BS, who is a biggie with this conference, and tell her to have a breakout session on PMPS. She is one of those doctors who is not helpful at all with this pain syndrome. I'll wait till the article is out so I can use it as leverage. Love Hipp
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Good luck, Fog, with the article.
I'm in the process of deciding if i want to go back to school to persue my DNP (doctor of nursing practice.) It's a clinically-based doctorate for Nurse Practitioners. I've never really known what I'd do a research project on, but now I do--PMPS.
Hell, even if I don't move forward for this advanced degree, I think an article of some sort for NP journals, and a poster session for the next NP symposium in CO is in order. As soon as I finish my work obligations (writing up a complete policy & procedure manual for HIPAA at our clinic. Can you spell BORING?)
Thanks for motivating me.
Anne
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Go Anne!!!!!!!!!!!!!
I submitted the article this afternoon. Please send your positive thoughts and surround our article. When I hit "send" I felt an incredible rush of electricity through my body, as if a force were propelling the emai! Quite extraordinary. Over 1200 submission per week though and they pick one to print. I should hear within the week if they choose ours. If they don't I will post if here and submit it elsewhere. Love, Fog
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Fog: Let's do hope and pray they pick yours!
and Anne: any of us on this particular thread would agree that YOU would be an exemplary author of such a research topic. You have a ready source of fellow sufferers on this blog whose experiences you might draw from, and who would benefit from your hard work!
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Thanks. You all have inspired me. It will take a while for me to formulate what I want to write, and how to go about it. I do want to contact my previous breast surgeon, to see what she knows, what she hears (if anything!) in her professional circles. To see if their breast center addresses this issue at all...
Anne
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Great Ann, let us know what your BS says. My BS wants to be oblivious.
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Good morning everyone. I hope this is a good day for you. It's overcast and gray here. A nice change from the heat and humidity. Can't believe I'm saying that in Maine.
I haven't heard back from the NY Times yet. What????!!! I keep checking my inbox. I sent the article on Monday so technically they will let me know by next Monday if they are publishing it. Please send your powerful positive energy and surround the article. Make it glow!
This is totally off topic but I wanted to share a book with you that has made a huge difference in my family's life. My mother has Alzheimer's and until I found this book my father was at odds with her every day, trying to reason with her, correct her, tell her why she couldn't go visit her mother and on and on. "Contented Dementia" by Oliver James changed how we interact with her. I can't recommend it more highly. If you have a loved one with dementia or know someone who does please let them know about this book.
Love to you all, Fog
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I haven't heard from the NY Times. I'm giving them a couple more days to realize their oversight
and then I'm going to Plan B. Still figuring that one out. I really thought it was going to be published by the Times. On a happier note, my PS put me in touch with an amazing woman who works at Dana Farber and is an advocate for breast cancer treatment, funding etc. I told her about our group and I gave her the nutshell version about PMPS, lack of information, lack of treatment. I think she could be an important ally. I'm starting to wonder if we should form a steering committee with members across the country. What do you think Deeds?
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