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Post Mastectomy Pain Syndrome (PMPS)

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  • jean13
    jean13 Member Posts: 7
    edited March 2010
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    shoshi, thanks for the links to pubmed.  

    I will be going to new pain management dr. next week. I've never liked doctors and this experience has made that even worse.  I've been taking Neurotin for about 9 months. Not much relief but am afraid to stop taking it.  Ultram is contraindicated because of the Remeron I've been on for many years.  I hate the idea of taking meds.  Its like thowing darts in the dark.

    Then someone finds the right doctor and the right drug/treatment combination and gets relief.  It makes you want to keep trying but it is discouraging.  Physical therapy doesn't seem to be working but therapist says it could take a long time to see effect.  

    This is the only place I've found with ladies that understand what it is like to try and function with terrible pain every day.  People look at me and think she can't be in as much pain as she says, but what I am suppose to do...if I went out looking as bad as I feel...well lets just say it would be scary!! 

    Oh well, take care y'all, it is off to bed for me. PT tomorrow morning.  I am going to a breast cancer survivor fashion show on Thurs. and have the breast cancer retreat renuion on Sat. Looking forward to these fun events!  

     Jean 

  • robinlbe
    robinlbe Member Posts: 73
    edited March 2010
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    Jean, you're not in Louisville, are you?  There's a BC survivor fashion show Thursday night in L'ville, too!! 

    blessings..robin

  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Ok, so I went to the second installment of  "pain management 201".  Same thing different day.  I did get heavier pain meds. He increased my percocets to 3 times a day and upped the mgs. I was shocked.  I was asked to give a urine sample but could not pee in that cup!!  So, they gave me a saliva test that has to be sent to a lab.  They posted script for saturday though.  Do I look like a drug addict to any of u?????????????  I am also taking 2 elavil b4 bed instead of 1.  It does not help my pain.  Nothing does.  The deal is, nothing is gonna help unless I find a dr who will do surgery to unchain the nerves.  But, do I want another surgery????  The burning question.  I would have to be convinced by the doctor that he fully understood what I was talking about and had done the surgery I need a lot.  Know what I mean............

  • rose847
    rose847 Member Posts: 18
    edited March 2010
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    Hi Ladies,

    Read on some post where a "injury reconstructionist" Dr. went back in to clean up the bundled nerve problems that were causing PMPS pain. I never heard of this kind of surgeon and wouldn't even know where to begin to find one. Most PS are so busy that they would probably not be interested.

    I also have fibromyalgia-for ten years. Yet my newest Pain Dr. did not feel it was the actual cause of my chest/arm pain. Mostly because many women have the pain after mast and do not have fibro. She does feel that it makes any recovery harder. My fibro pain did not cycle in until 3 months after my surgery. I was so glad about that. It effects my legs the most which keeps me from being able to exercise. I was actually doing better 2 months after my surgery than I am now.

    I have the same problem where family/friends do not understand my pain level. My husband/teens do since they live with me but everyone else feels that I should be back to a normal schedule. Almost feels that they don't believe me when I tell them what I am going through. My sister even told me this morning that she is confused and asked me how women who had radical mast handled it years ago. I do not know and wonder myself. Did they suffer quietly?

    I feel that the only way change can occur and prevent this from happening to others is through our voice. I have been very vocal about it to all my numerous doctors and people I know. Yet, not sure if they are listening.

  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Rose, there is a post by lovegolf on page 6 of this thread that has info about reconstructionist surgery.  Lovegolf also emailed the infor on this dr, but he is in Savannah,  I live in Florida, sigh!

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited March 2010
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    UGH!!!! I hate when i get re-directed to another page & i am in the middle of writing here ..i lose it all!!!!

     ANGEL: SINCE my surgery almost 3 months ago i have been nauseous  on & off more on then off....so i have learned to eat whole wheat toast (good fiber) drink.sip ginger ale.u shld drink reg if u need calories..i dont i could lose weight..its a wonder why i havent....but ginger ale really is the best..also yogurt & or jello helps me too..sometimes i start out nauseous & sometimes i start out hungry & then in th emiddle of eating i get nauseous...hope this helps a little too..

    More to come in a minute i have to send this so i can read the last posts

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited March 2010
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    Hi again:  ESTEPP: TELL ME MORE ABT UR MEDICATIONS PLEZ!!  Flexural is that a sleep aid..i have such trouble sleeping b/c of the pain..when i lay down & turn over it hurts & especially when I GET UP FROM LAYING DOWN!!! i have to hold my rt breats basically underneath & get up slowly & sit for a min or 2 b4 standing upo b/c the pain is sooooooooo bad. I am going to p/t for my rt shoulder blade b/c its being effected from all this...its weird my right implant has always had a bump on the bottom of it, that i push in & pops right back out (i am assuming its the allorderm) but i noticed the bump is getting bigger,...doesnt hurt..i also notice that when i feel my Rt side swells up it feels like there are ripples in my skin..lol the swelling makes   it hurt but not the rippling..What excatly is Ultram? Is that like an anti-inflamorty or muscle relaxer?

     LIPCHICK find another pain DR NOW!!! any pain dr that wont give u narcostics is an idiot..even my pain Dr said its really hard to become addicted to even percoset & i take to diff kinds now of oxycodone & oxycontintin (excuse my spelling).....wish it helped my shlr blade too..he also agrees that it only lasts 4 hrs..if ur in pain  & take pain meds then u wont get addicted..its when u take it & ur not in pain.....this of course is my own opinion :-)

     Soccermom 5 yrs u have been on pain mang site? wow!! may i ask why...

    Fog ..how did u 1 day have no pain..how long did it or has it lasted?

    Happy St pattys Day..hope u all had a nice daY

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Shoshi - It was just a moment. I was in water aerobics. The water was aqua blue and with my eyes half closed I felt like I was floating in a lagoon in the Caribbean.  Just a moment but it was precious and gives me hope.

    Rose - you're right. The only way to change things is to keep talking about PMPS. Still, even though we do our best to raise awareness, the reaction of the medical world can be very frustrating. Don't give up. I just know once we have some momentum we will change the world!

    I went to Boston yesterday on the bus. What a beautiful day. We had so much fun but I got sick! This cold came on really fast.  So hopefully it takes off really fast, too. Spring has sprung up here and I want to go out and play. :)  Love to you all, Fog

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited March 2010
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    Hi Shoshi,

    I wonder if your medicine is making you sick.  I know I was on some meds that made me so sick that I couldn't eat much either. Only 7up, crackers and toast. I was so glad when the doctor changed my meds. I felt much better and could eat again. I hope you can feel better.

    Hipchik, I agree with Shoshi. You should be able to get the medicine needed to help releive your pain.  I don't think your doc is giving you enough.I read an article about the fact the doctors should not even question giving PMPS patients pain meds. I will have to find the article for you all. Also, my pain clinic made me take a urine test a couple of times. The doctor said they have to do the urine tests on all the patients to be fair. It is standard protocol.  I wish you the best.

    I will be thinking about all of you ladies and praying for you.

    Lots of Luv to you all!

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Hipp - I'm meeting with the pain researchers in Boston Monday morning (to discuss the article we're working on) and I'm going to ask about longterm pain control. If I can get in to see the actual MD who treats chronic pain from PMPS I'm going to see him, too.  It's not fair that doctors can't fix the problem and then won't give you meds for the pain. Just makes me see red. 

    Shoshi and Angel - how are you this morning?  Feeling any better? Hoping you do...

    With Love, Fog

  • rose847
    rose847 Member Posts: 18
    edited March 2010
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    Angel, How are you doing on the Cymbalta? It has helped my mood but do not feel it is doing anything for the pain after 10 days. My Dr. also has me on Tramadol/Ultram which is giving me nausea and heartburn but helping more with some of the pain. I am left with the hot poker burning pain that is in front and around my upper back. Sometimes it feels like a rope burn.  I believe my pain is multi layered so the Tramadol is helping some but not all of it. Also, feel more swollen all day since on these meds. Wondering which one is making me retain liquids. Going to give it another week then decide if I should stay with the Cymbalta. Finally off the Neurontin, now I hope my hair will stop the thinning!

    Fog, thank you for all the great work you are doing. Let us know of the outcome.

    Hope everyone is feeling good and has a great week.

    Rose

  • Tinkerbell99
    Tinkerbell99 Member Posts: 193
    edited March 2010
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    hi ladies, a co-worker of mine gave me a patch to try for my back which is effecting the pain in my breast. I have been having major pain in my shoulder blade on the same side as the pain in my breast.  The patch is Flurbiprofen(its an anti inflamortary drug that is Non steriod).  the company that makes it is  Teh Seng Pharmaceutical.  i did some research & it appears it good for ARTHRITIS & other stuff like that. It has NOT taken my pain away completley, but usimng the patch w/ my pain meds has made it tolerable.  My shoulder blade on sat didnt hurt at all after the second time using it. I have not tried it on the part of my breast that hurts, but it has reduced my pain in my breast thru using it on my shouolder blade. of course no of us can say this would help u, but hey i always feel anything is worth a try. i am going to make an appointment w/ my orthopedic dr too & see what is going on w/ my shoulder blade. PT is making it worse..so i will not go back until Fri & see how i am doing then with the use of this patch. I hope that someone here can find relief using this patch..if anyone else has anything that has made their pain a little bit more tolerable, please share

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited March 2010
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    Yes, I thank you too Fog for all your work. You are so wonderful!

  • Estepp
    Estepp Member Posts: 2,966
    edited March 2010
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    Flexural is a muscle relaxer. Yes, it does make some people sleepy. I am very high strung... so it does not effect me that way. I was told to take it three times a day if needed. I only take it night. What I noticed about it is that I sleep ALL NIGHT. If I do wake, it is to use the potty.. and then I go right back to sleep. I was amazed at this.

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Hi everyone. Just wanted to let you know that I caught that miserable cold that's going around so I couldn't make the trip to Boston. I did email questions to the pain doctor instead but haven't heard back.I will post when I he writes back. 

    Oh, and I wrote my half of the article for the New York Times Op Ed (fingers crossed it gets published!). They asked me to write a poignant personal account of PMPS. So I had to turn off my advocate brain and talk about what it's like to have PMPS, how it changed my life. They basically said, "Let us be the scientists and you be the patient." I was a little miffed at first because it's such a mission for me now and I thought they were kind of patting me on the head. But they were absolutely right. Any doctor or researcher can quote statistics but how many of those studies have the perspective of someone who has actually suffered from PMPS. The words just flowed and I cried like a baby when I read it to my husband. You will see - your pain is woven through every line. I wrote for all of us...the lives behind the statistics. 

    With Love, Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Hey Foggy, I hope u will be better soon.  I can't wait to read the article for NYT.  Im so proud of u. Can u give us a sneek peak now???  Hugs and kisses, Hipp

  • Deeds
    Deeds Member Posts: 43
    edited March 2010
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    Fog - so sorry you caught the "creeping crud". And yes, we're all eager to read what might get printed. Hope it does!

    Rest well!

  • rose847
    rose847 Member Posts: 18
    edited March 2010
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    Shoshi-The docs also had me on the patch you are on. I ended up getting an allergic reaction to the adhesive. I am now on Voltaren which I like more. It is a cream that I can rub anywhere it hurts. I use it 4Xd.  It is a form of Motrin that is topical only. It has helped me with the muscular pain but not the nerve pain. I have been using this since my BMX. Motrin bothers my stomach if I take it everyday and they thought I should be on a daily anti-inflamatory med.

    Also, I have had 2 pain clinic doctors now tell me that 1 med will not take care of multi layered pain issues. They both told me that most meds only have  20-30% pain relief.  They both recommended a anti-depressent that works on pain receptors with a nerve pain med. Since I had too many side effects from Neurontin(which is suppose to be the best for nerve pain) I am now on Tramadol/Utlram. They also felt the best pain anti-depressent was Elavil but did not want me on that one because it can cause weight gain and I am a little overweight. They put me on Cymbalta. The 2nd pain doc clinic agreed with these med choices.  It has only been a week, so I will give it time. I feel a decrease in pain after taking the Tramadol but nothing after taking the Cymbalta.

    Hope this info helps others.

    Rose

  • jean13
    jean13 Member Posts: 7
    edited March 2010
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    Robin, Yes I live in Louisville, and yes I went to the fashion show.  Did you go?  There were two Robins at my weekend retreat but I don't remember either one being from New Albany.  Its a small world.  I work in Jeffersonville.

    I went to see new pain specialist today, Dr. Reasor. He was the first doctor that acknowledged my pain.  I was prepared with multiple articles about post mastectomy pain syndrome.  Before I even showed them to him, he said I think you have PMPS.  He is recommending Spinal Cord Stimulation.  SCS uses a small implanted system, similiar to a pacemaker. It generates tiny electrical pulses that are sent to your spinal cord.  These electrical pulses block pain signals before they arrive at the brain, replacing them with a tingling or massaging sensation. SCS is not a cure for pain.  It's a therapy that can help reduce your pain to a manageable level without the side effects of drugs ( which like many of you have found have side effects and are not very effective).

    The scary part is that it is "implanted" into your spinal cord.  The company is ANS (Advanced Neuromodulation Systems), a St. Jude Medical Company.  The have a website poweroveryourpain.com.  I am suppose to meet with a representative from the company before the procedure.  They initially implant an temporary device and test it for several days/weeks to see if it is going to work, it is called a trial.  If you do get relief then a permanent implant is put in.

    Has anyone tried this before? Have any of your pain specialists mentioned this therapy? It seems pretty aggressive and a little scary. It is used for other chronic pain conditions besides PMPS.

    Jean 

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited March 2010
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    Hi Fog. I hope you feel better soon.  Thank you for representing us all and all the hard work you do!

    Rose, my pain specialist says the same thing and they have me on Neurontin and Cymbalta.  They say they work together. I am also on Lortab for the pain, Femara for the cancer and Zolpidem to help me sleep.  I was not getting any sleep, because the pain is so bad. The sleep medication helps me sleep well.  If you don't get rest, then your pain is even worse and you cannot heal.  My oncologist insisted on taking me off the Zolpidem, but my pain specialist said it was fine to take, because it is helping me.  Right from the beginning my oncologist did not know what to do with me and my pain. She said she had never seen any of her patients in so much pain and she did not know the cause of it.  After I did some research and found out it was PMPS and I told her that, then she knew what it was all about. I believe the hospital did not want to tell me what was really wrong. They need to be educated so much, because they are the doctors treating us after our surgery.

    The pain specialist had me on methadone at one time, but it made me really sick to my stomach.I was so sick I could hardly eat anything.  I have to say though, the methadone helped with the pain some. The doctor tried to push it really hard upon me, because it helps with nerve pain, but man was I sick.  I cried so much with happy tears when the doc finally took me off that medicine. 

    I was also on Zometa for 2 years. It helps protect your bones from the cancer.  My cancer had spread to my hip, so that is why they had me on Zometa. Is anyone else on Zometa?  When I was on Zometa, I could hardly move at night and I felt like I was 100 years old. Every bone in my body hurt. I told my oncologist several times the pain I was having and she would always say that the pain was worth the benefits that I was getting from the Zometa. Sometimes I wonder. I am no longer on the Zometa and no longer have the 100 years old issues.

    I believe the radiation therapy staff need to be educated as well.  I was in so much pain when I had my radiation therapy! I could hardly stand it.  I could hardly get my arms raised up enough to have the radiation. Later I was told I have a contracture in my arm.  When I look back, I believe that the radiation staff and oncologist should have known that I had the contracture and should have picked up on my pain issues and the fact that I could hardly raise my arms. The only docs that seem to understand are the pain specialist.  The pain clinic people are so kind and understanding. It is nice to have a group of ladies like you that understand as well. I think of you all often and wish I could wave a magic wand and make you all feel better!! 

    Much Luv

  • TuffyBuffy
    TuffyBuffy Member Posts: 16
    edited March 2010
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    Oh my gosh, Jean, they just had an article in our local newspaper about a women that just had the temporary spinal cord stimulator procedure and she said it took away her pain immediately!

    Here is the link to the article :}

    http://www.duluthnewstribune.com/event/article/id/163512/

  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Sometimes I think that doctors forget we have had cancer.  If cancer is not bad enough, we now have cronic  pain. UGH!!!

  • fogandroses
    fogandroses Member Posts: 130
    edited April 2010
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    Hi everyone! I can't believe it's Thursday already. Seems like I missed this week entirely. That was a pesky cold but now I'm all better.  Thank you all for your well wishes. You made me feel loved!  Thank you for saying you're proud of me, Hippy. (Can I call you Hippy? I feel like I can.)

    My sisters, when you say thank you it melts my heart. You don't have to thank me for what I'm doing. Truly...it's not work for me.

    For those of you who want a preview of the article - for now it's under wraps. They are writing their part and will pass it by me (hopefully soon!).  It's  nothing new. I just tried to put into words what this experience has been like, and what it took from me and my family. Tears. But I am starting to feel better. Yes, I have hope.

    Wow - the implantable device sounds like a life saver. And it has a remote control. Can you imagine being able to turn down the volume on your pain?  Love and healing to you all. Fog

  • hipchik47
    hipchik47 Member Posts: 113
    edited March 2010
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    Hey Foggy, glad u r all better.  I do amaze myself with the things I do.  Going cross country in my rv was really hard but I did it.  I wanted to turn back many times, but my dh said I could do it and I did.  Im doing it again in the fall,  There is another get together in Las Vegas October 1-4.  I went last year to meet my chatroom friends. It was such an amazing experience.  This year the chat get together and the boards get together r at the same time in Vegas so I will double my pleasure and get to meet everyone.  Everyone is invited so if anyone on this thread wants to go it will change your life.

      I really want a permanent cure to this pain.  I hate taking the pain meds.  They really do nothing but make me dizzy. 

      

  • jean13
    jean13 Member Posts: 7
    edited March 2010
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    Thanks for the article, Tuffy.  I still have lots of questions and concerns about the procedure.  But I will keep y'all in the loop as I find more out.  I am interested to find out if this has been used, effectively, with PMPS not just other pain conditions.  My physical therapist had not heard of this therapy.  She used a tens machine on me today and will look into seeing if my insurance will pay for it.  Dr. Reasor doesn't think the tens will give a deep enough stimulation to alleviate the pain.  I'm off today because I have to work the weekend so pain is not to bad yet.  Although it is all relative because I think if most women felt what I'm feeling right now they would be very upset.  Oh well, I've got tons to get done today.  Never feel like doing much once I get home from work.  Take care.

  • robinlbe
    robinlbe Member Posts: 73
    edited March 2010
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    Jean - yes, I was at the fashion show :)   but not at the retreat.  I didn't sign up for that one, but am signed up for the June retreat.  I met another gal from New Albany on here (breastcancer.org) on another thread - we both had our BMX in January (two months ago) - so we went to the fashion show together, and we're signed up to go to the retreat together, too.

    To everyone on here, I'm so sorry you all are experiencing so much of this.  I started reading through this when I first had my surgery because of the pain I had - thinking I was experiencing it - and you all reassured me that it was WAY too early for me.  I guess I'm one of the lucky ones, and now that I'm 2.5 months out, I'm pain-free in my chest.  Tight?  YES!!!  But pain-free.  But I'm still reading what you all are going through as I'm learning so much, and for some reason, I feel that there's a reason I'm needing to know this....haven't a clue why, but I know I'm supposed to keep reading.  Hope you all don't mind.

    Blessings....robin

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Robin you are supposed to be here. Stay with us. Keep reading. We're all here for a reason. Even if we don't understand why yet. Love, Fog

  • KristenPink
    KristenPink Member Posts: 79
    edited March 2010
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    Hi Ladies

    I am new to this thread.  But whippetmom suggested I post some info that my physical therapist gave me.  My PT is also writing an article for a medical journal calling for the need of PT after MX and recon.  Any ideas how I can attach this document?  It is not a link.

    KristenPink

    4 weeks post-exchange

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Welcome Kristen!  I'd love to read your PT's info. I don't think we can attach documents though. I had the same problem with a JAMA article I wanted to share but couldn't figure out how to do it. Sometimes people copy and paste directly. How long is the document?  Fog

  • fogandroses
    fogandroses Member Posts: 130
    edited March 2010
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    Kristen - I just PM'd you.