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Post Mastectomy Pain Syndrome (PMPS)

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  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Hi Buffy welcome to this thread.  So, how is pain specialist gonna help you??  I think someone mentioned getting a nerve block so read up to find post.  i went to a pain doctor.  He only was concerned I was a drug addict looking for drugs. So that ended that relationship lol.  Hipp

  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    I went for one nerve block.  It did  not help, in fact, it was worst for me. 

    Bettye

  • armadillo1
    armadillo1 Member Posts: 2
    edited February 2010

    I had a bi-lateral with 14 nodes removed..no reconstruction.  However, I get terrible spasms on the left side where the nodes came out.  I notice that when the weather is cold I get more that enough spasms.  It feels like a knife is going thought my chest...then after a minute or so it goes away,  does anyone else have these spasma.  After 7 years I would think scar tissue and nerve endings would have settled down,

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited February 2010

    Hi hipchik47,

      To answer your question about the pain specialist;  The pain specialist referred me to an Anesthesiologist.  The anesthesiologist is going to try the nerve block on the neuroma and intercostalbrachial nerve (the nerves that go down your arm and across your chest).  If the nerve block works, that means the pain is coming from those nerves. Then the Doctor would possibly talk about surgery, if the nerve block works.  He said we have to make sure we find out where the pain is coming from first.

    I having been going to the pain specialist since last April.  I went to different sessions from April till September.  Now I just have follow up visits with the pain specialist.  In April I started with physical therapy, which made my pain worse. The physical therapist tried myofacial release and worked on my lymphedema.  I wanted to quit, but my hubby wouldn't let me. So, I pursued on.

    They also played with my medicines, trying to help me there.  I got really sick from that.  One week I was so sick, that I could not eat.  I was so happy when they took me off that particular medicine, that I cried and cried in my car, after I left the doctor's office.  When your stomach does not feel good, then it is very hard. My son was playing soccer one night and I was so sick that I had to just stay in the car. I was so sad I couldn't watch his game. They found me some medicines that do not make me sick.  I have been through the mill with that. I still have alot of pain,  but if I don't take the pain meds, I am in severe pain. I am content with what they have me on.

     I also had occupational therapy. They taught me to pace myself. It is good to pace your activities and to rest when you need to. They taught me to do proper body mechanics, like standing and sitting up straight, lifting things properly, pushing rather than pulling items if possible, how to's for housework and many others. The reason for proper body mechanics, is so we do not injur another part of our body and it may help our inury as well.  Occupational therapy taught me some relaxing tools, also.  Physical, mental and social relaxing.  Physical relaxing is any exercise that you are able to do;  back, neck or foot massages;  stretching;  a nice warm bath;  resting or napping;  personal care like hair care or manicures;  and most important is playing with children, pets or friends. Smile  Mental relaxing is soothing music;  books;  hobbies;  baking something easy;  card games;  praying and meditation;  and looking at or preparing scrapbooks and photo albums.  Social relaxing is informal, relaxing time spent with family or friends;  watching TV with some family or friends;  talking on the phone;  playing with the kids and many others.

    Occupational therapy taught me Qhi-gong and very gentle yoga, which was my favorite.  It was very relaxing.  They also said that sleeping and rest is very hard for chronic pain sufferers. That we should try to get proper rest, otherewise our bodies have a hard time healing and it can also make the pain worse.  Night time has always been the worst time for me, because I have more pain then.  The doctor had to give me something to help me sleep, because I was not getting hardly and rest.  

     The pain clinic made me go see a psychologist, also.  This was one thing that I did not think I needed or wanted to do, but I kept an open mind and that helped.  It was a women psychologist, so that made me feel better.  They said that your mind and your pain is related.  That is a long story.  They taught me alot about how the mind works.  I just know that there is difinate pain!

    The psychologist was very nice and understood my pain issues.  That was the best thing about the pain clinic, nobody questioned whether or not I had pain.  They related so well.  They knew it was real.    My oncologist was not very understanding at all and I thought she should be the most understanding.  The pain clinic was a nice place to go, because they understood so much, but I was glad when my sessions were done.  It is hard to go places, when you do not feel good.  We just have to do the best that we can.  Sorry, this was so long.  I hope maybe it can help somebody somehow.  Thank you

    TuffyBuffy

     

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

     Hi Dillo, I do not have spasms at all.  I just have the cronic constant pain.  If your pain  goes away I would think its not cronic, but i don't know.  I f it gets bad I would use a heating pad.  I use one a lot and it does feel  good.  But, I really only use it in the winter her in Florida.  I go to the pool in the summer.  I feel worse after any exercise, but the warm water softens the blow.. There is an indoor pool in my community, but they keep the water too cold.  Im the summer I cool of in the indoor pool for a few minutes but the cold water is the worst for me.  .

      Buffy u r lucky u have an understanding pain specialist.  I was so upset when my pain guy said I might be a druggie.  He said he had to be sure so he gave me a drug test, hello, Im over 60.....humiliating....  He did not seem to believe i was in pain, what a dip he was. 

      A lot of drug make me sick..   I have tried many b4 i get one that is ok with my system, but the really do not work anyway.  I take 2 percosets a day usually at nite because, as u said the pain is always worse at nite.I only take 2 cuz noone wants to perscribe narcotics.  I also have neurontin.  I can onlyl take a small amount so it really does not work at such a low dose.  I got the nerontin from an arthritis specialist.  She did dx me with fibromyalgia.  I knew I had it cuz my whole body hurt.  So between fibro and PTPS iim in a lotttttt of pain.

      I don't buy the mind over matter bit.  Obviousy I try to keep buisy, but thats not the point, I want to be pain free, not pain forgetful.  I also think a shrink would not work for me. I can dx myself lol. Hipp

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    OMG - I just wrote a LONG post and it went poof!  Grrrrr....!!!!!!!!!!!!

    I'll write again tomorrow but for now - Buffy - thank you so much for your post. You have been through the whole process and describe it so well. Do you know what kind of surgery you might have if the intercostalbrachial nerve block works?

    Hipp - you make me laugh and cry! I can feel your humiliation with that doctor. If he had to walk a day in your shoes he would beg your forgiveness.

    Armadillo -I wonder if your muscles are contracting around a nerve? More thoughts on that tomorrow... with love, Fog

  • jean13
    jean13 Member Posts: 7
    edited February 2010

    I'm so glad to finally found some women who understand what I've been experiencing for the last 18 months since my bilateral mastectomy.  I work in healthcare and have been extremely disappointed in my doctors.  Do they not understand "I am in pain EVERY day!"  Started with a new physical therapist today so we'll see how that goes.  I work full time.  I can't wait to get home in the afternoon and lay down.  I'm going to a Breast Cancer Survivor Retreat this weekend so if I find out anything I'll pass it along.  Like most of you I have tried many things without relief.  Take care.

  • Deeds
    Deeds Member Posts: 43
    edited February 2010

    Welcome to the forum, Jean!  We'll all be glad for any information you can pick up from the Survivor Retreat.  We surely have gained from all of the shared tips, whether tried and true, or flops. All good to know...

     Hope your PT experience will gain you some relief!

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    So, I sent an emailed my bs about my continued pain.  Se replyed back and basicly blew me off.  She sent her notes from all my visits. Then she told me she did not know why I have this pain but acknowledged that PMPS is real.  She suggested I see the pain management specialists and see her again too.  I really did not expect anything more from her.  She also sent me an article that she wrote on pain after mast.  I will post it here when I figure out how to do it lol.  She said I did not fit the criteria for this article.  It lists stuff like age, under 40,I was 58 at the time, and blah blah blah.  I fit all the rest like had some pain b4 surgery.  We can discuss this article when I post it so we can see if we fit the criteria for pmps.

      Welcome jean, It must really be frustrating being in the healthcare field and be dissapointed in your doctors.  The doctors just do not want to admit there is something wrong with this picture!!!

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Good morning everyone and welcome Jean! Your perspective on PMPS will be really helpful and, like Deeds said, please do come back and share what you learn at the survivor retreat.  The fact that you work in healthcare and have been disappointed in your doctors is upsetting because that means that even someone with the inside track is falling through the cracks.

    I keep hoping someone will post and say that their doctor/hospital is a role model in recognizing chronic pain after breast surguery.Then we won't have to reinvent the wheel. Isn't there anyone out there doing it right?  In the meantime, I'm going to try and make "my" hospital the role model!!!!

    Armadillo - I have had sciatica for thirty years. When I do something that causes my right hip muscles to contract the nerve pain is severe. It happens VERY rarely now - only if I forget and lift something really heavy which I can't do anymore because of PMPS.  I wonder if your pectoral muscles are clamping down on a nerve. Seven years is a long time but apparently in the world of neurology they talk in years not months for nerve issues. 

    Hipp - your post kind of sums up what I've been finding...that even doctors who have "read the articles" and maybe even written their own aren't applying their knowledge to help their patients. And that makes me wonder why? I think about this off and on all the time. What am I missing? Until we understand why this data is 10 years old and largely ignored in practice how will we change things?

    with love, Fog

  • jean13
    jean13 Member Posts: 7
    edited February 2010

    Thanks for the warm welcome!  This condition can be very isolating.  I agree with all of you, I don't think the docs know what to do so they just keep passing the patient off hoping someone else will deal with it.  Unfortunately it is the patient who has to deal with it. 

    I remember 20 years ago being told by my gyn that there was no such thing as PMS, it was just an excuse women made up to be bitchy (needless to say that was the last time I saw him).  I also remember what my mother went through, and put us through, when she went through menopause.  I'm afraid ladies that being female is a disadvantage when it comes to healthcare.  Look at the research that was done solely on males and heart disease for so many years. 

    But I believe in these examples there is also hope!  We now have the Susan Komen org., American Heart Assoc. etc. to help women's health issues.  However, these accomplishments came, I'm sure, with perserverence and time.  Lets hope that we can be the voice to help other women that suffer from this condition.  I needed this support for the last year and a half, I don't want other women to have to suffer alone.  You ladies are so great!

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited February 2010

    Hi to all,

    Dear fogandroses, If the nerve block works, then the doctor will look into having surgery on the neuroma or intercostalbrachial nerves.  He said I would see a neurologist or another kind of doctor (I forgot what kind of doctor that was).  I have the nerve block next week, so I'll let you know.  I am a bit afraid of the nerve block, though. Take Care.

    Dear Jean-my mother's name is Jean, and she is a sweetie!  I hope you have fun at the retreat. I know it is hard when you don't feel good. You are absolutely right that we need to be the voice out there!  You take care now, too.

    Hipchick - you are hip to go swimming. Keep up the good work.  I hope they heat up the pool for you.  I know the cold is very hard on PMPS.  It seems to make it worse.  When winter came, my pain got worse.  

    Wow Armadillo, you are a trooper. You have had it for seven years. God bless you.  I have had spasms, also.  It feels like a bungee cord around my chest. The doc asked what it feels like; burning, throbbing, achey, hot and he said a few more.  I said it feels like all of them!  

    We do have to keep being our advocates out there and keep the strength.  We can be strong together. 

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Has anyone tried Reiki treatments? I just went to our local center to give it a try. They were offering free 15 minute sessions for cancer survivors. It was very soothing. It wasn't massage but more of an energy healing, gently touching trigger points. I don't know if it helped but I'll post  next week and let you know.

    We're driving down to NYC to visit our younger daughter tomorrow. She is an aspiring actress and model. It's a tough business but she loves it. When I was diagnosed she quit her job at a hedgefund and went after her dream full time. But first she came home and took care of me for a month. Our older daughter (the one just accepted to med school) quit her job and did the same. In my "past" life I would have worried about them but now I'm cheering them on!!! We've all learned a few lessons I guess.

    Happy Weekend Everyone!

    with love, Fog

  • robinlbe
    robinlbe Member Posts: 73
    edited February 2010

    Out of curiousity......I just wondered about the majority of your surgeons....

    Were most of your surgeons doctors who only do breast surgeries???  Or were they, more so, general surgeons?

    Just wondered....

    blessings...robin

  • Deeds
    Deeds Member Posts: 43
    edited February 2010

    Robin - mine is pretty much JUST a breast surgeon, although she is also a plastic surgeon; thus she was my doctor for both the mastectomy and reconstruction.

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

      Fog, how nice your kids are following their dreams.  I always wanted to be on stage, but I was too timid.  I will have to settle for drama queen lol.  I don't know why doctorrs do not want to get into the after effects of their surgery.  I ponder that also, and it pisses me off. 

       Rob, my surgeon is s breast only surgeon.  I chose her because she was a breast only surgeon..  I always will wonder if my decision to go with her was a good one, but she is the dept head, so I thought she would be good.

      Jean, the pms analagy is  a good one.  I think the comments usually came from male doctors.  Since my bs is a women it really pisses me off that she just wants to push me along to someone else like she wants to get rid of me.

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Here is the article my BS wrote with a colleague.  See if u think u fit the "profile".

    Editorial

      

    The Search for Relief:

    Evaluating Patients with Chronic Pain after Breast Surgery

     

    Authors:

    Loretta Loftus, MD, MBA

    Christine Laronga, MD

    Affiliations:

    1Don and Erika Wallace Comprehensive Breast Program, Department of Women's Oncology, H. Lee Moffitt Cancer Center, Tampa, Florida

    Corresponding Author:

    Name:  Loretta Loftus, MD, MBA

    Address:  Don and Erika Wallace Comprehensive Breast Program

        H. Lee Moffitt Cancer Center

                    12902 Magnolia Drive

                    Tampa, Florida  33612

    Office phone number:  813-745-1675

    Fax number:  813-745-7287

    E-mail address:  loretta.loftus@moffitt.org

    Word count:    1116

                Chronic pain after breast cancer surgery occurs in approximately 50% of patients.1,2  The severity is variable, but sensory disturbances including paresthesias and phantom breast phenomena occur in approximately 47%.3  Potentially, this problem may increase with higher incidence of detected breast cancer and improved survival.4,5  Reasons for chronic discomfort after surgery are varied and complex, but nerve damage associated with axillary lymph node dissection is the most reported cause - a doubling in prevalence compared with cases without this procedure.1  Interactions among treatment modalities such as type of breast surgery, axillary procedures, adjuvant chemotherapy, and radiation therapy add to difficulty attending overall evaluation.1

                In this issue, Gärtner and colleagues report on a cross-sectional study from Denmark that evaluated women operated on for unilateral primary breast cancer and documented the prevalence, location, severity, and frequency of persistent pain and sensory disturbances in 12 well-defined treatment groups.6  Participants completed questionnaires that addressed issues of specific regions of symptoms, severity of pain, frequency of symptoms, physician visits due to pain in the operated region, use of analgesics and/or other treatment for pain in the operated region, and pain in other locations.  The responses were also analyzed with regard to age of the patient and treatment modalities for the breast cancer.

                The results are compelling.  Almost half (47%) of the respondents reported pain in one or more areas, and 52% of those patients rated the discomfort as severe or moderate.  As many as 76% of patients with severe pain experienced discomfort on a daily basis.  The breast area was the most frequently reported site of pain, followed by the axilla, the arm, and the side of the body; and 40% experienced pain in other non-surgical areas.  The use of analgesics was relatively prevalent; other modalities for relief of pain such as physiotherapy and massage were also employed.6

                Predictive factors most significantly associated with chronic pain included young age (18-39 years), especially if treated with breast-conserving surgery.  Treatment with adjuvant radiation therapy, but not chemotherapy, increased the risk for development of pain.  Mastectomy carried a higher risk for moderate and severe distress compared to breast-conserving surgery.  Axillary node dissection was more often associated with frequency of pain as well as severity of pain than sentinel node biopsy, regardless of the type of surgery to the breast.  Interestingly, patients with complaints of pain in other parts of the body were more likely to develop increased pain in the surgical site (65%) compared to women without pain in non-surgical sites (37%).  Sensory disturbance was more frequently associated with younger patients.  The likelihood for development of any sensory discomfort was most significant for the patient treated with breast-conserving surgery, axillary lymph node dissection, and chemotherapy with breast radiation therapy or breast and local-regional radiation therapy.  Of those who reported sensory disturbances, 65% also experienced a type of pain which suggests that sensory abnormalities and nerve injury may lead to increased pain risk.6

                Comparisons with other reports in this field may be difficult due to inconsistencies in definitions of chronic pain, different measurements of pain, reports from single institutions, changes in mix of surgical techniques and adjuvant treatment over time, and variable intervals in assessment of pain after surgery.  Insufficient numbers of patients may also limit conclusions.  An advantage of the Gärtner et al. study6 is the large number of patients, 3253 nationwide, compared to other studies with 85-1,600.1,3,7-10  The larger population provides better risk estimates for all treatment modalities.  Also, treatment principles are standardized at all breast cancer treatment facilities in Denmark according to European guidelines11 and national protocols designed by the Danish Breast Cancer Cooperative Group (DBCG).12  The 47% frequency of pain in the Danish patients is comparable with reports in the literature of approximately 50%.1  Sensory disturbances in 58% of the study patients was also similar to previous reports.3  The investigators6 also found that the most significant predictor of chronic pain and sensory disturbances was age less than 40 years, an association more definitively reported than in other studies.3,13,14  From our standpoint, the most valuable finding from the authors was identification of predictors associated with highest risk for development of pain that had not been sufficiently emphasized to date.  Thus, clinicians are now more cognizant of these high-risk patients, so that appropriate therapies may be initiated early.

                Measurement of pain prevalence was limited to a finite period of time.  Additional knowledge of the natural history of chronic pain after breast surgery may be elucidated by assessment over multiple intervals after surgery and other treatments.  The impact of widespread use of modern systemic adjuvant chemotherapy regimens and various endocrine therapies on pain may also be of further interest.  History and physical examination of the patient and diagnostic imaging procedures almost always provides further insights into the underlying etiology of discomfort.  Although results from the Danish population make be difficult to generalize to other nations with more varied ethnic groups, socioeconomic conditions, and health care systems, the findings provide a plausible estimate of chronic pain and sensory disturbances after treatment for unilateral primary breast cancer.

                Psychosocial characteristics of patients may impact on perception of pain, and the sensation of pain can affect quality of life, an individual's feeling of well-being, and activities of daily living.  Impaired quality of life can be affected by chronic pain to an even greater extent than by type of breast cancer surgery.1,3  Additionally, chronic pain may be associated with shorter duration of education and single marital status.3  Patients' expectations for post-surgical pain and fatigue after breast excisional biopsy or lumpectomy can be influenced by acute pre-surgical distress, previous experience with same surgical procedure, anxiety, pre-surgical pain and fatigue, and age.15  Consideration of these factors in analysis of pain may also help to target high risk patients.

                The findings from Gärtner and colleagues6 are exciting and stimulating.  One can look forward to further analyses by this group.  As clinicians who care for breast cancer patients, we have been alerted to the magnitude of the problem of chronic pain after breast cancer surgery.  In addition to nerve injury from breast surgery and axillary procedures, we should consider other etiologies, including brachial plexus infiltration by tumor, compression injury to the brachial plexus from lymphedema, radiation-induced ischemic plexopathy, injury, and fibrosis, carpal tunnel syndrome, and second primary tumors.16  Individuals at high risk for the development of post-surgical pain syndrome should be identified and therapy initiated early.  The impact of early intervention can be assessed.  Management requires a multi-disciplinary approach that includes evaluation by surgeons, medical oncologists, radiation oncologists, pain management specialists, psychologists and psychiatrists, social workers, and experts in rehabilitation medicine.  The Gärtner et al. study6 is significant and has helped all of us in the search for relief of pain after breast cancer surgery.

    References

      

    • 1. Steegers MA, Wolters B, Evers AW, et al. Effect of axillary lymph node dissection on prevalence and intensity of chronic and phantom pain after breast cancer surgery. J Pain. 2008;9(9):813-822.
    • 2. Kehler H, Jensen TS, Woolf CJ. Persistent postsurgical pain risk factors and prevention. Lancet. 2006;367:1618-1625.
    • 3. Peuckmann V, Ekholm O, Rasmussen NK, et al. Chronic pain and other sequelae in long-term breast cancer survivors: nationwide survey in Denmark. Eur J Pain. 2009;13(5):478-485.
    • 4. American Cancer Society. Cancer Facts and Figures 2009. Atlanta, GA: American Cancer Society; 2009.

    5.         Surveillance, Epidemiology, and End Results (SEER) Program.  SEER Stat Fact Sheets:  Breasthttp://seer.cancer.gov/statfacts/html/breast.html.

    6.         Gärtner R, Jensen MB, Nielsen J, et al.  Prevalence of and factors associated with persistent pain following breast cancer surgery - a nationwide study.  JAMA.  2009;

    • 7. Gulluoglu BM, Cingi A, Cakir T, et al. Factors related to post-treatment chronic pain in breast cancer survivors: the interference of pain with life functions. Int J Fertil Womens Med. 2006;51(2):75-82.
    • 8. Baron RH, Fey JV, Borgen PI, et al. Eighteen sensations after breast cancer surgery: a 5-year comparison of sentinel lymph node biopsy and axillary node dissection. Ann Surg Oncol. 2007;14(5):1653-1661.
    • 9. Vilholm OJ, Cold S, Rasmussen L, Sindrup SH. The postmastectomy pain syndrome: an epidemiological study on the prevalence of chronic pain after surgery for breast cancer. Br J Cancer. 2008;99(4):604-610.
    • 10. Kudel I, Edwards RR, Kozachik S, et al. Predictors and consequences of multiple persistent postmastectomy pains. J Pain Symptom Manage. 2007;34(6):619-627.
    • 11. Goldhirsch A, Wood WC, Gelber RD, et al. Meeting highlights: updated international expert consensus on the primary therapy of early breast cancer. J Clin Oncol. 2003;21:3357-3365.
    • 12. Moller S, Jensen MB, Ejlertsen B, et al. The clinical database and the treatment guidelines of the Danish Breast Cancer Cooperative Group (DBCG); its 30-years experience and future promise. Acta Oncol. 2008;47:506-524.
    • 13. Poleshuck EL, Katz J, Andrus CH, et al. Risk factors for chronic pain following breast cancer surgery: a prospective study. J Pain. 2006;7:626-634.
    • 14. Katz J, Poleshuck EL, Andrus CH, et al. Risk factors for acute pain and its persistence following breast cancer surgery. Pain. 2005;119:16-25.
    • 15. Schnur JB, Hallquist MN, Bovbjerg DH, et al. Predictors of expectancies for post-surgical pain and fatigue in breast cancer surgical patients. Pers Individ Dif. 2007;42(3):419-429.
    • 16. Cherny NI, Olsha O. Brachial plexopathy in patients with breast cancer. In Harris JR, Lippman ME, Morrow M, Osborne CK. Diseases of the Breast (Third Edition). New York: Lippincott, Williams & Wilkins, 2004, 1241-1255.
  • BettyeE
    BettyeE Member Posts: 136
    edited February 2010

    Thanks for posting this article.  I feel better knowing that somewhere, someone is listening.

    My surgeon was a breast surgeon only.

    Bettye

  • rose847
    rose847 Member Posts: 18
    edited February 2010

    Hi-I am so glad I found this forum. Have been searching for days on internet and actually been here before. Regular search engine on homepage for Post Mastectomy Pain does not bring you here-got lucky when I did a search of your forums. Thanks for starting this topic.

    I have been suffering with nerve pain for almost 5 months now after bilateral mastectomies. Controlling slight lympadema with manual lymph drainage techniques.

    Was on Neurontin for 3 months but just went off because of the horrible side effects. Could not read or drive(same symptoms with Lyrica). Since being off neurontin the pain is becoming unbearable again. I also just stopped physical therapy last week thinking maybe it was making pain worse. Had 30 PT appts which helped range of motion but not for the nerve pain.

    Have seen two different Physiotherapists in Chicago who have not helped. They would not even acknowledge the PMPS condition. First telling me it could take 3 months, then give it a few more months, was last told it could take 12-15 months.

    Unable to function well after 3pm. Pain worsens as day goes on and stays until bed. Compression bra was too irritating. Wear UnderArmour Compression top few hours later in the day. I am constantly changing into something different. Only sleep if I take AmbienCR.

    Contacted pain mgmt clinic but they did not seem to be aware of PMPS. How is this possible in the city of Chicago?

    Currently getting reiki treatments which are wonderful and do help for a few hours. Yet they are expensive and cannot continue much longer.  

    My Dr. does not want me on the trycilic drugs(elavil/pamelor) because it causes weight gain.I found that if I stayed on neurontin I would have had to up the dose with worsened side effects. Have any other meds helped anyone?

    Also, who is Dr. Wascher that a few posts have referred to?

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Hi Rose, ditto to everything u said.  I had many pt treatments too. Did a good job on range of motion, but nothing else.. I also took Lyrica.  Too may side effects.  I am now on nerontin, but the dose is too small to help.  Any higher dose and I get se's.  I cannot function after dinner, The pain escalates during the day and since I am a nite owl, I really don't get much done..  I only sleep with sleep meds.  I just started melatonin and it seems to work.  Give it a  try.  I stared with 1 then went up to 2.  The brand I use is sundown.  I am looking into a new pain management doctor.  Hope 3rd one is a charm!!!! Hipp

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Hi everyone. How was your weekend? I'm back from NYC. It is a change of scene from Maine! I'm starting to love the place....so much excitement and good food. It's a good thing we walked for hours and hours.

    Hipp - I skimmed the article and will read it more carefully tomorrow. Thank you for posting that!

    Rose - I'm glad you found us. It is a relief knowing that we're not alone with this...Dr Wascher wrote several articles describing PMPS. I emailed him out in CA and he sent a handout for doctors and patients. Here's the link: http://www.cancersupportivecare.com/pbtpshandout.php  The PDF version is at the bottom. This might be helpful to bring to your doctor(s). I know my neurologist and PS were very interested and asked to keep copies.

    I'm sorry you're not sleeping. You, too, Hipp. It really stinks. There is hope though. I finally started sleeping through the night (well, almost, I just wake up once or twice) a month or so ago. It's been 19 months since my bilateral mx. I really thought I would lose my mind. How long can a person go without a good night's sleep?

    Here are some things that have helped: Massage (for muscle tightness in shoulders and back), Water aerobics (couldn't do this until recently due to pain - I know it's a catch-22), Yoga (same), Acupuncture (3 sessions so far), really good bandeau bra from Macy's to wear to bed (compression 24/7 necessary), one Reike session that really helped (definitely going back for another session. he told me he felt that my heart was broken. so sad) 

    My surgeon was a breast surgeon, head of the department, very respected. By the way, is your pain bilateral or unilateral? Mine is on my left side only (prophy, no nodes).

    Good night all.Together we will get through this. with love, Fog

  • rose847
    rose847 Member Posts: 18
    edited February 2010

    I also had the one of the most respected breast surgeons in Chicago. He never got my pain under control after the surgery. After 3 weeks told me my pain issues were beyond his expertise and excused himself from my case. Ugh!  Have been on a rotating Dr. seek since.

    Even after almost 5 months I have different types of pain going on both sides. My left was prophlactic and BC on right. Left pain is from swollen edema that will not go away where drain was, extends under my scar. Right is same to under my arm with slight lyphadema issues to my side and back that get worse as day goes on. Also have extra tissue on this side that tightens up and gets a spasm.Have phantom pain on both sides, tingling/squeezing/burning. This has actually increased during the last month and is now all away around me including my upper back. I also have the small tattoo that was placed below my underarm on this side that is very painful. However, I feel the worse pain is the feeling of a tight rope all around me. All of these symptoms have worsened since going off the neurontin but I wanted to get rid of the blurry vision. They were starting to worsen while on which meant I would have had to up the dose.

    I have not had any luck with any bras. Still have the Amoena front closure which I can wear with lightweighted forms in the morning or for an hour or so later in the day.Usually am swollen later in the day so everything(even my compression tops) feel too tight. What brand/style of bra do you wear from Macys? 

    Fog, thanks for website info. Hip, thanks for melatonin info. I will try that. I wonder what side effect I have from the Ambien that I am not aware from other than it only gives me 5 hrs sleep.

    Rose

  • dreaming
    dreaming Member Posts: 219
    edited February 2010

    After so many years I still get pain, and sometimes itching that drives me crazy, only I get some relief if I use a cold body lotion, because I have fobromalgya and PMR I am in constant pain,I control somewhat with meditation and no more than 200mg. of ibuprofen a day.

    Also the pain extends to the inside of the arm and shoulder of the side of my mastectomy.

    After surgery I had phantom pain for months, after all it is an amputation,at work I consulted with surgeons that do amputations to learn how to handle that horrible pain.

  • makingway
    makingway Member Posts: 465
    edited February 2010

    Rose and Hipchick- I read your posts and share the same experience. The pain intensifies after 3:00 pm. I feel like the upper right quadrant of my body is swelling, although it's not apparent. I feel useless for work. I try to imagine doing the activities that I once did-it's depressing. I've applied for Social Security disability. I'm sure the will deny me because I look fine. I've also went through 2 rounds of PT that lasted 6 weeks each time. When I began I couldn't lift my arm above my waist. I regained most of my range of motion, but I still don't have all of it back and my movements aren't spontaneous. I forgot to reschedule my PT and stopped going. I felt that it was exacerbating the pain. I am going back but I doubt there's anything they can do. They'll just tell me to do the manual lymphatic drainage, which I do w/o much relief. I'm frustrated that my doctors/PT act as if they don't understand the cause of my pain. My surgeons response was to prescribe me a pill. I think it was Neurontin. I don't want to be taking pills the rest of my life. I want them to fix what they damaged. I watched a video of reconstruction surgery. It was enlightening. It's no wonder there's pain as a result of it. The doctors make it sound so harmless. It is destructive. I think they should change the procedure name to destructive surgery.

    Fog-Where in California is that doctor located? I live in Orange County.

    BTW my surgeon is a general surgeon who is practicing in the Breast Care Center at Hoag Hospital. 

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited February 2010

    hi everyone,

    i am new to this this thread . almost 2 months ago i had a PBMX w/ immediate reconstruction..since then, i have been in the hospital 2x b/c of infections. well infections r gone & i was starting to feel better & then all of a sudden i statred w/ pain again...i am seeking a 2nde opinion, gonna go to a pain mang dr & start P/T. I am an emotional wreck. My dr doesnt want to give me anything 4 the pain anymore..i called him up today & said its gonna be a feew weeks b4 they can c me..i aske dfor drugs we'll c..i am looking for any support i can get from anyone . My sons BM is this sat I cannot even begin to belive i am not going be an emotional wreck.any advice would be g8t

  • fogandroses
    fogandroses Member Posts: 130
    edited February 2010

    Makingway -I'm not sure if this is current but if so maybe he can help:

    Dr. Wascher is the Physician-in-Chief for Surgical Oncology at the Kaiser Permanente healthcare system in Orange County, California, as well as an Associate Professor in the Department of Surgery at the University of California at Irvine. Dr. Wascher also remains an Adjunct Associate Professor of Surgery at the Uniformed Services University of Health Sciences School of Medicine.

    I emailed him at rwascher@doctorwascher.net and received an automated message but he personally replied the next day.

    Shoshi -  just sending you a hug. Sounds like you're on the right path - seeing a pain specialist and starting PT. I know it's overwhelming but at two months out this might not be chronic pain. Hang in there and keep us posted. Congratulations on your son. You must be so proud.

    with love, Fog 

  • steph90
    steph90 Member Posts: 1
    edited February 2010

    Hi everyone,

    I'm so grateful to have found you all.

    I was dx with DCIS in Aug 2008, had a right modified mastectomy after having a lymph node removal from under my right arm (was about the size of an egg). It took the doc's forever to even figure out that the mass under my arm (adenocarcinoma, with no specific characteristics relating it to any body part). My breast "tumor" was microscopic in comparison. I followed with both chemo and radiation due to the large size of the initial lymph node and that they also found 1 other positive node. I had a total of 14 nodes removed. Last treatment for radiation was this past August.

    I started having intense itching below my shoulder blade, thought maybe it was a mole and had it removed. Itching continued. During radiation, I developed numbness and tingling in my right hand and right foot. I went to see a neurologist, and had an EMG/Nerve Conduction Study done, and am considered permanently diabled due to severe painful neuropathy. I was already taking Lyrica for fibromyalgia, and he increased the dose and also added oxycodone (long acting percocet). This doesn't seem to work near as well as the percocet, even though the total dose is larger.

    About a week ago I started having severe pain at the same place as the itching, and now the pain in under my arm, and across the chest wall above my mastectomy scar. The pain is very sharp, and also feels like I am receiving one good fist punch after another. It's bad enough for tears, and taking my breath away. I had a bout with shingles (on my left side) about 4 months ago, and the pain I am currently having is very similar to that.It also looks to me like there is swelling under my arm. I've felt there was swelling for months, but the docs all agree that it's nothing. Probably just fat, since I seem to add 10lb everytime I turn around.

    I finally called my oncologist today (I just picked a doc, not knowing who to call for this). Anyway, the NP looked at my records and feels this is also neuropathy. I'm wondering what he would have thought if he had not seem records from my neurologist. Anyway, he increased my pain meds for break thru pain and ordered a chest xray to start with. I have no idea what he feels a chest xray will show, but will have it done.

    So, does this sound like any neuropathy any of you have heard of? Does this sound like anything anyone of you have? It seems like I read about the chest wall and underarm pain, but nothing about adding back pain to it also. I'm just so very tired of having pain. It just plain wears on a person after a while. I'm also taking an antidepressant, and went thru three weeks of the horrible withdrawal of Effexor, just to be put on a newer form of it. I get so down, as there just seems to be no end point with all of this.

    Sorry this is so long, but I just felt the need to confide in someone, so my poor hubby doesn't have to hear me whine about all this so much. Thanks for listening!  If it seems a bit convoluted, I can owe it to my chemo brain, that just came and never went away.

  • rose847
    rose847 Member Posts: 18
    edited February 2010

    Steph, is your pain a pulling pain or burning pain? It could be scar tissue that has formed. I have this between my underarm and mastectomy scar. Have you tolerated the Lyrica?. Any side effects?  This is a drug I tried 4 years ago and had severe blurry vision , same symptom on Neurontin.

    Also, since you have fibro(I also do) costochondritis often goes along. This is an inflammation of the ribcage and the pain is awful. It can be hard to breathe. They do have a great website of information if you google the condition.
    Having had problems with costo is the main reason why PS would not do reconstruction on me.I have been praying that I do not get hit with that again. 

    Also, do you still see a lymphadema specialist. After my original lumpectomy, I developed slight lymphadema and never really got rid of it. I went 2Xyr for checkup and measurements of my arm.  Now, after BC recurrence and BMX it has gotten worse and is also in my chest wall. So I am getting checked once a month. The Dr. who does it is a physiatrist. She however, has been no help for my pain issues. By the way, my Dr. will not put me on any antidepressants because of the issues most have with weight gain. Yet, I have some very down days and wish there was something I could take.

    I am finding that reiki treatments do help me to relax. It gives me about 4 hours of relief then the anxiety/pain returns. I just found out yesterday that my local cancer group gives free reiki 2Xmonth. Have signed up which will help cost.

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited February 2010

    Hello,

    Today I was supposed to have a Nerve Block, but the Anesthesiologist did Trigger Point Injections,which was about 7 or 8 shots around the chest area (around the scar) , which consisted of numbing medicine and steroids.   It is supposed to last anywhere from one day to 2 months.  Everyone is different.  It seemed to only help a little bit around the chest area, but has not helped my arm pain. I still feel like I have a bungee cord wrapped around me. Have to see how it goes.

    My surgeon was a General Surgeon. She was supposes to be the best, but did not even tell me that PMPS could happen.  Is there anyone out there, that their Dr. told them about the risk of PMPS?  

  • hipchik47
    hipchik47 Member Posts: 113
    edited February 2010

    Buffy when Deeeds started this thread it was about the lack of knowledge about PMPS.  It kinda evolved into a "what are we gonna do about it and how can we get thru to our doctors to tell us about it pre surgery" thread.  I hope u get relief with the nerve block.  If I know it works I would try it.  The worst place for pain for me  is under my arms and the corners of my chest.  Could the dr have done a block in that area?? It seems like a spot that is more fat and muscle than nerves 

      Rose, I was originally dx'ed with costocondritis.  But when I researched it this only lasts for a few months and my pain is over 2 years.  I would not start with anti depressants, Rose.  I have tried to get off them many times and it is all but impossible.. I was originally put on them for anxiety.  I later found out that MVP. mitro valve prolapse, presents itself in the same way as anxiety.  Its a common condition of the valve in the heart that does not close all the way.  So, I want to get off the zoloft, but I can/t stand the se's.  Its a wierd withdrawl.  I think there is a thread on this, antidepressent withdrawl.  If u need something for depression ask for something that is not habit forming.  I think an ativan once in a while might help u.

      Steph, welcome to this thread.  I have fibro too ugh!!  I have taken Lyrica and now take nerontin. Neither one of them really touch the fibro pain or PMPS.  The only thing that kinda helps is percocet, but no doctor likes to perscribe that.  I am going to a new pain specialist next week so I will report back here.  Also, one of the symptoms of PMPS is itching.  At first I thought it was phantom itching, but it is a symptom of PMPS.  If u read back, You will see, that we all have the same symptoms and all thought we were nuts.  How sad is that.  Its bad enough that we had cancer,  and now our doctors do not want to have anything to do with our pain after their surgery.

       Shoshi, congrats on BM, Im assuming that is Bar Mitzvah!!!  I seem to rise to the occation and am sure u will too.  Just have some good pain meds handy.  Tell dr u need them for the BM and maybe he will understand and give u some percocets.  Most of us did not get relief from PT.  For me , it made the pain worse. 

      Makingway, You might get rejected from Social security dissability at first, most ppl do, just re apply and don't get discouraged.