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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010

    ME: Fibro they told me.

    Now, I would have to completely walk away from my life if I HAD to do therapy once a week.. and then do water therapy weekly/daily. I told my entire cancer team this. They looked at me like a was 100% from MARS.

    If it were life and death ( like cancer was for us).. I would put my life on hold until I was released to go back. I did this.. I quit working... keeping my grandkids 3 days a week... fitness.. EVERYTHING for 6-12 months.

    But for pain or other things.. I CANNOT.. I have no time, nor am I willing to make the time to do therapy or other things.. I just CAN'T. Again.. doctors looked at me like..." well.. sorry... if you do not do these things, we cannot help you.. nothing else can help you really)

    This is so sad for us ladies who suffer these pains. There are not meds out there that can really treat us 100%. And to do the therapy they want us to do... well.. the only way I could do it is if I had a 9/5 job and no kids.

    God help us ! I should be thankful that the meds I am on take my pain down to a level 2-3... it was a 7.. and I still pushed through that ... in tears alot... but I pushed. So I am thankful meds help some.

    To those of you who can do the therapy.. WONDERFUL! You are blessed... I do step into the bathrooms at work and home to do Yoga moves I was taught at the cancer center... these help when I cannot move my left arm to do my job.

    xxxooo to you all!

    not wanting pity.. just stating the facts of how it just.."is" for a lot of us...

    XXXOOO bigger kisses and hugs to you after my last statement,

  • Angel40
    Angel40 Member Posts: 47
    edited April 2010

    Laura,

    I love your new picture. Really great!

    My regular therapy will end this week and water therapy will end next week then I will rest because just like you I have full time job and family. I will rest and by fall or winter I will make arrangement to go for water therapy either once or twice a week. It did really help and I want a quality of life too and more time with the kids so I will see how this will work. I know how hard it is to do ALL in just 24/7.

    take care

    Edith

  • makingway
    makingway Member Posts: 465
    edited April 2010

    Does anybody find that the pain gets worse when the weather changes? My pain usually starts @3:30 pm and escalates. I know it sounds crazy, but I swear the barometric pressure causes a change in my body-the pain is horrible!

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010

    Makingway, My pain is worse as the day goes by too..I went to Walmart yesterday.  I was in there for about an hour.  The pain was so bad after I push that cart around, especially after I put the coke cube and 24 bottles of water in it.  And, of course, I had to lift them into the cart.  So, I suffered through a very painful nite and had to rest today...bummer, I have other fish to fry!!

      Estepp, " If u don't do these things we can't help u."  I have heard that many times.  I agree with u, I can not do another round of therapy or exercise.  Its all I can do to get through a normal day let alone suffer through more torture. 

      So now, after trying all the resources, I give up.  I will take my pain meds, that don't help. and just do what I can to exist.  I just want to be able to color with my grandaughter!!!

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010

    (((Edith)))

    You have small children( I only have small grandchildren)... and sister.. I do believe your pain level is higher than mine and you struggle more... I am so sorry...:(.. I hate this... my prayer for you is that the Lord GIVES you more time.. somehow.. to do the therapy that helps you most... ( maybe win the lottery so all you have to do is hang with your family.. and healing your body!!!! One can pray!)

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010

    Yes, my pain is exaggerated with weather change..

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited April 2010

    making way:nice 2 meet ya sista!4 years ple.have told me i'm crazy!be4cancer,i had m.s. pain in legs gets excruciating 2 days be4 a cold front..and now,pain from my dblm has joined it. i'm so glad summer is coming..thanks ladies, for your other post. seems i'm not alone, after all. happy 2 know that, sorry ur in this boat with me.light and love  3jaysmom

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited April 2010

    hello making way,3jaysmom here:we've never spoken, but girl! we r sistas ! i have ms as well as breast cancer, and barimetric pressure drives me wild.the legs from ms, and the breast area from ca. my drs. have validated it as real, call it fibromyalga,cancer related, etc. before ms dx. 20 yrs now; i saw a special allergist; who told me i'm allergic 2 cold front, and gave me shots..no pain.really cost prohibitive ,and cant do w ms. however, i'm more accurate than the weatherman! i know 2 days ahead a cold front is coming. thank u.i feel good knowing i'm not crazy, but so sorry u have to suffer w it too. pain is sugnifigant for me

  • makingway
    makingway Member Posts: 465
    edited April 2010

    It's great to know that I'm not alone in this. I knew I wasn't I was insane! LOL Now, if we could only get some valuable research done on the subject...Ya right. I saw a fairly new doctor yesterday in hope that he will help me with getting Soc Sec Disability. I presented him with some studies on Post Mastectomy Pain Syndrome and one on Lymphedema. I believe I suffer from both. He said he was aware of PMPS. That was surprising to me, most doctors have never heard of it. I'm not sure how knowledgeable this doctor is on the subject. He told me that he had read that some think it's emotionally related. Some think it has something to do with fibromyalgia, others believe it is the chromium in the implant that is the cause of the PMPS. I said to him, "That figures they always want to blame it on the persons mental state. It must be a mental disorder". It's the easiest thing to do.

    Kind of off topic, but thought I'd mention it because of the fibromyalgia. I just read something posted by a doctor on another website. He seems to believe that cancer is the result of an underlying autoimmune disorder i.e., rheumatism, fibromyalgia, lupus. He mentioned something about a common bacteria-some form of strepptocarpus I think, being the root cause of the condition. It was interesting to me because my Mother has fibromyalgia and my sister has lupus. I always thought that I ached more than most people, yet I never bothered to get diagnosed. In the last 4 years I have had several urinary tract infections, which, are caused by a bacteria. And, I hate to admit this, but back in 2005 when I was suffering from diarrhea and malise, for no apparent reason, I was tested and found to have a common parasite. My daughter who is grown and does not live with me had the same symptoms back in 2003. That's what gave me the idea to get tested. Recently I had the same symptoms, so, I insisted on being tested once again for this. To my amazement they found a different parasite!! WTF! I read how it is believed the parasites are acquired. Let me tell you, I did NOT drink any water with feces in it. I have 2 cats. I wear a mask when I clean the litter box because the only logical explanation is that it must be airborne, although they don't believe so. I also read that it is often times a chronic condition that can keep recurring. Which makes me wonder because in 1998 I had the same symptoms. I didn't know what was wrong with me. I went to the doctor and was told it was anxiety. I took Paxil for 5 years and the condition abated. But, I wonder if I had something as simple as a stupid bacteria that caused all of my symptoms. What came first, the chicken or the egg?

  • binney4
    binney4 Member Posts: 1,466
    edited April 2010


    Makingway and ALL here,

    I'm excited to share this information with all of you on this thread about a new study by New York University that will look at the symptoms we still have AFTER breast cancer treatment -- pain, disability, swelling, etc. It gives us all a chance to bring these symptoms to the attention of the medical community. PLEASE participate, and let's make these problems known. The study is an on-line survey that should only take you 10-15 minutes to complete and will go a long way toward making our voices heard. The announcement is below.

    Be well!
    Binney

    Announcing a research survey

    by Dr. Mei Fu

    of New York University College of Nursing,

    and StepUp-SpeakOut.org

    Please participate!


    We would value your response to the questions on our on-line survey:

    Breast Cancer and Lymphedema Symptom Experience

    Survey Regarding Breast Cancer and Lymphedema Symptom Experience

    If you are a female 21 years of age or older and have been diagnosed with and treated surgically for breast cancer, you are invited to share your experience of breast cancer in this online study.

    The purpose of this study is to examine the reliability and validity of the Breast Cancer and Lymphedema Symptom Experience Index, an instrument to evaluate breast cancer survivors' symptom experience. Your valuable input will help researchers better understand women's experiences of breast cancer, including symptoms, distress, and quality of life. Ultimately, the information obtained from the study will help to gain insights into the needs of women who have survived breast cancer so that more personalized care 
    can be provided.

    The New York University Institutional Review Board  "IRB" (an ethical review board that monitors research involving human subjects) has approved this research study.

    The study is brief and will take about 10-15 minutes of your time. You can skip any questions that you might feel uncomfortable in answering. Your participation is voluntary and anonymous. We will keep your responses confidential.

    Your input is valuable. Please take the time to complete this survey. We appreciate your response!

    Copyright 2010, College of Nursing
    New York University

    We ask our therapist friends and health care providers to please suggest their patients take this survey.

          Take this survey

    Thank you for your participation.  Your feedback will help further research on breast cancer and lymphedema symptoms in order to improve patient care.


    Sincerely,  
    StepUp-SpeakOut.Org Group

    Sorry if the invitation sounds so formal, but part of the IRB approval is that we include this information in invitations to take the survey.

    You can also get the link to the survey on the front page of the StepUp-SpeakOut.Org website.

  • whippetmom
    whippetmom Member Posts: 6,028
    edited April 2010

    Bumping

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010

    I have tried to take this survey twice now, on different days Binny... it keeps giving me an ERROR message.

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010

    me too

  • makingway
    makingway Member Posts: 465
    edited April 2010

    Try this one. http://survey.constantcontact.com/survey/a07e2sl6jfhg6p59caw/start

    I got it by clicking on the link at the bottom of the article in the box

  • binney4
    binney4 Member Posts: 1,466
    edited April 2010

    APOLOGIES! The software has screwed up, and the software folks are not available until Monday. ("OneBadBoob"/Jane is the web mistress, and she's been tearing her hair all weekend!) As soon as the glitch is fixed I'll let you know, as your input is really valuable. Thanks for trying, and again, I'm sorry about the glitch.

    Thanks for being so patient!
    Binney

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010

    got it thanks makingway

  • Estepp
    Estepp Member Posts: 2,966
    edited April 2010

    took it.. thanks!

  • Angel40
    Angel40 Member Posts: 47
    edited April 2010
    makingway, yes my pain gets worse
  • Angel40
    Angel40 Member Posts: 47
    edited April 2010

    Estepp

    Great Laura, I really hope your my angel and I could just win the lottery. Anyway,I'm at work right now sitting for almost 8 hours and my butt hurts. It's almost time to go home.

    thanks for the hugs and prayers.

    Edith

  • binney4
    binney4 Member Posts: 1,466
    edited April 2010

    Thanks, all, for your patience! I'll re-post the survey announcement here now that the glitches have been worked out. (Whew!)
    Binney

    Announcing a research study by Dr. Mei Fu of New York University School of Nursing, and StepUp-SpeakOut.org.

    Please participate!

    We would value your response to the questions on our on-line Survey Regarding Breast Cancer and Lymphedema Symptom Experience

    If you are a female 21 years of age or older and have been diagnosed with and treated surgically for breast cancer, you are invited to share your experience of breast cancer in this online study.

    The purpose of this study is to examine the reliability and validity of the Breast Cancer and Lymphedema Symptom Experience Index, an instrument to evaluate breast cancer survivors' symptom experience. Your valuable input will help researchers better understand women's experiences of breast cancer, including symptoms, distress, and quality of life. Ultimately, the information obtained from the study will help to gain insights into the needs of women who have survived breast cancer so that more personalized care can be provided.

    The New York University Institutional Review Board  "IRB" (an ethical review board that monitors research involving human subjects) has approved this research study.

    The study is brief and will take about 10-15 minutes of your time. You can skip any questions that you might feel uncomfortable in answering. Your participation is voluntary and anonymous. We will keep your responses confidential.

    Your input is valuable. Please take the time to complete this survey. We appreciate your response!
    Copyright 2010, College of Nursing
    New York University

    We ask our therapist friends and health care providers to please suggest their patients take this survey.

    Please click to take our survey:

    Any questions, please contact us at:

    StepUp-SpeakOut.Org
    24 East Avenue
    New Canaan, CT 0684
    info@stepup-speakout.org

    Mei R. Fu, PhD, RN, ACNS-BC
    Assistant Professor
    Course Coordinator
    Fundamentals of Nursing
    College of Nursing
    New York University
    726 Broadway 10th floor
    NY, NY  10003
    mf67@nyu.edu

    Thank you for your participation.  Your feedback will help further research on breast cancer and lymphedema symptoms in order to improve patient care.

    P.S.  The glitches have been worked out on the survey.  Thank you all for being so understanding.  Any problems PM me or contact me at info@stepup-speakout.org.

    Thanks!

  • hipchik47
    hipchik47 Member Posts: 113
    edited April 2010

    Foggy are u home yet.  How much April in Paris can u take lol!!

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010

    Bonjour Hipp and everyone! I think of you often. You are all in my heart.  How much more of this can I take? LOL I do miss Maine and our girls though so will be ready to return next Saturday. We're heading out by train tomorrow for the south. Lots of rain predicted but that will give me time to finish up the article for NY Times (fingers crossed on publication!!!) I just got the docs' version from Boston. Disappointment. I'll explain later but it needs work.  As the doc said, I (and that means all of us on this thread) know more than most doctors about PMPS. So, what the heck. I'm going to write their part for them and they seem okay with that. Stay tuned!

    Since I've had this amazing opportunity to change everything about my routine for the past few weeks I can tell you that changing something, even one thing, can make you feel much better. Here's an example of what I mean. I am not on the computer at all here and I have found that I have far less nerve pain in my hand and arm. So my hand doesn't go numb at night and I'm sleeping better. This makes such a difference. The pain in my chest still comes and goes. But I feel better most days and I wish the same for you. Love you all. Fog still in the city of light

  • whippetmom
    whippetmom Member Posts: 6,028
    edited May 2010

    Fog:  I do not think I would ever want to come home, if I were you!  Well, I would come home, but I would be followed by a container of french antiques and architectural finds....and FABRIC!  I love fabric!

    Okay, on to issues relative to this thread:  My sister told me that your  Dr. Robert Wascher is at Kaiser in Irvine, CA.  That is my medical facility - I am a Kaiser member and that is my hospital.  But I do like my oncologist now - have no complaints.  But I certainly have entertained the thought of transferring over to him, just to be on the cutting edge of treatment when it comes down the pike.  It sounds like he "gets it"....

    Anyway...bonjour and hurry home, because this thread misses you!

    Deborah

  • binney4
    binney4 Member Posts: 1,466
    edited May 2010

    Not to be a party pooper, but I just wanted to mention that Dr. W has been a whole lot less than helpful on issues of post-mastectomy lymphedema. Not unusual for doctors to know little about lymphedema and assume they know all they need to, but it can be misleading. That's as far as I'll go on that. Kiss

    Be well!
    Binney

  • whippetmom
    whippetmom Member Posts: 6,028
    edited May 2010

    Really Binney?  I am so sorry to hear about that.  I am a bit perplexed anyway about Dr. W's role in PMPS...because he is a surgical oncologist.  Is this an arena - pain management - something oncologists typically address?  I ask, because my own oncologist seems like she is only interested in pharmacology. 

  • minxie
    minxie Member Posts: 239
    edited May 2010

    I am so happy to have found this sthread - it explains a lot. I had double mastectomy with lattismus dorsi flap reconstruction in July '09 and I have never been the same since - severe upper back pain. They finally sent me to a pain management center and prescribed me Fentanyl which I was on for 6 months. It took care of the pain, but the side effects were horrible - constants sweats and chills, drug withdrawal symptoms every other day. I ended up kicking the Fentanyl cold turkey after becoming addicted to it. That was a rough week.

    OK, Now I've been off the painkillers a month and - i am hurting again. I have that bungie cord wrapped around the chest feeling - so glad to hear that this is from the surgery, I had convinced myself it was the cancer back and even saw the onc yesterday. The big problem though, and I don't see this mentioned in the thread - SERIOUS pain above and below the area they cut for the lattisimus dorsi flap, both sides. My back aches after sitting all day like you wouldn't believe. I have been told this muscle helps you sit up straight. Could it's removal be what's killing my back? Does it make sense that these nerves would be kicking in now? The area from the scars to the breast are also very sore to the touch.Would love to hear from anyone who has long term pain from the lat flap surgery -

  • Estepp
    Estepp Member Posts: 2,966
    edited May 2010

    MINXIE

    Please PM a lady here with the screename : Linda54. Ask her ALL your questions. She had LD and has had to do some PT to deal with some things...

  • fogandroses
    fogandroses Member Posts: 130
    edited May 2010

    Popping in to say Happy Mothers Day to all the beautiful mothers here. I'm not home yet because the ash cloud canceled our flight. I thought we had missed all that action but apparently it's still drifting around. Trying again tomorrow...ready to come home. Deborah - we only have carry on bags so not many goodies for me! If you ever see Dr. W. please tell him Lisa from Maine is still grateful for his articles. Binney - sorry he let you down. Minxie - I didn't have LD surgery but just wanted to say you'll be in my prayers tonight. Laura is right - Linda54 is a great source of information. Hope you get some answers soon. Hugs to you all.

    With love,

    Fog under the ash cloud in the City of Light

  • hipchik47
    hipchik47 Member Posts: 113
    edited May 2010

    Hurry home Foggy I miss u!!

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited May 2010

    a woman on another bd posted this & i am trying 2 help her..maybe someone can PM her!!

    Thx..also can someone please tell me where the survery is abt pain & MX

    Ter wrote:

    Hi its mid early may 2010 and I havent written in long time...well I did write, a long post, then poof It all went kurplunk!, so I gave up..and I now want to write about what is going on w/me now, as I am having tons of problems in my stomach, they have found tons of lymph nodes thru my gastronologist, and my onc, wasnt too happy, and normally i see him every 6 months for tons of test in tubes etc....he checked me out throughly, and somehow I can see and read his mind, as at the beginning I did not like him, then I spent alot of time thinking of what he has to deal with, from telling someone they have BC, to how many months if that they have left, no wonder he has so much on his mind...

    Please tell me where to post, as so many things and I dont know where to post as Im a stage 4, have had 2 masct's, one each year, from 04, and one in 05, then mets in 06, and now I have had these stomach problems in my lower R quadrant, I thought it might be my appendix, but after being passed around ffrom dr to dr, and test and test, im so sick of it, Im ready to actually give up, as i have no energy, lots of problems and past week the stomach pains since NOT appendix, are in my L side, like coming from my mets in hip.

    Im so sick and tired of trying to fight this battle, and I also as some of you know I have fibromyalgia, which is SO bad, even my onc mentioned as he looked at my feet and touched alot of areas, as my fibro is everywhere...plus I have RSD in my L foot, and I cant get around, let alone get to the grocery store, let alone cook...my stomach cant stand looking or smelling foods, I cry alot, and i was suppose to start H20 warm water therapy for my pains 3 X week..which each time Im suppose to go, something else takes its place....

    I dont want to keep on going, though I finally got my son who is 28 and at home, he is a big help, as though he hasnt been able to talk about my cancer, but last week we got into a big whopping arguement, and I kind of won, as i told him I think he needs to know what is going on with me, he fought it, as he has led a hard lift, and now after many years of school, he got his certificate, and on that day he was laid off w/the rest of the guys...so he is trying to find any kind of work....he even brought home a dog, she is so sweet, she is a pitt bull, but I havent seen any bad things about her..she has been passed around from owner to owner, and here, we just love on her and she is so happy, she is a bit overweight, and loves this content home where no yelling etc takes place..she comes in my room to check on me...I wanted a dog but knew I couldnt take care of one, as I cant take care of myself...I have a mom who is in a rest home from a stroke, and it takes me having a half way good day, and tomorrow being Mothers Day I have to go..I use a walker, and have a wheel chair, as my ortho told me to have one, as he said "remember, if you walk somewhere, remember you always have to turn around and come back. Please help me, as I really dont want to cont to go on w/these test or being told anything....I do take my cousin who is or was an RN as she has ?s for the doc, which is good as my brain is almost zilch...Im by myself, and feel so so alone....

    Please tell me where to post this and other things that are on my mind ..Im putting it in my fav in my home site..but tell me where i should put it.

    thanks so much

    hugs

    Ter, and yes I have a new picture

    I stay in contact with a few by email from as it said i joined in 04, but I actualy did a few years prior to that...Frown

    thanks and HUGSFrown

    It's better to be effective than it is to be right.-

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