Post Mastecomy Pain Syndrome

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csbridger
csbridger Member Posts: 2
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had a bi-lateral mastectomy 8 moths ago.  I have problems on my upper right extremeties which I have been labled as Post Mastectomy Pain Syndrome....only by articles that I have read.  My surgeon is in denial that anything is wrong.  His reaction was "You have babied your arm."  I have gone to rehab for physical therapy and did have good results but once it was completed I was on my own.  I have gone to pain doctors and have injections which did help temporarily.  The shots last about two weeks and then the dystrophy returns.  Thed medication they give you is for seizures and it was very hard of my body.  I confronted the doctor about my prognosis.  He said he could only make me comfortable.  In other words the dystrophy would always remain.  I am trying hard to get my life back.

There isn't any answer for this issue it seems.  I sense that I am alone and most people think all this is in my head.  I am sure there are other women out there that feel their chest tightened with the slightest of exertion.  The arm, shoulder and neck being restrictive..and constant burning and shooting pain.  I got off the medication and I feel my head clearer, and I have just had to accept this is what my life is about.

I applied for Unemployment and I was denied because I failed to get a leave of absence form signed when I left my employer.  Having Cancer wasn't a good enough reason to leave my employment.

I applied for dissability and I guess I am not disabled enough for that either.  The system doesn't work.  I have talked with my cancer counselors, and doctors....everyone just rolls their eyes and tells you they will see you in six months.  I hope there is someone else out there that knows they are not alone.  This is a real issue that needs to be addressed.  No one is listening.

If anyone else has expereinced Post Mastectomy Pain Syndrome I would love to hear from you.  Life is supposed to be enjoyed....and I am greatful for family.  Doctors just swept all my issues under the rug and dismissed me with, see you in six months.

Sorry about the complaining.....Please write.....I know there are others feeling this pain. 

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2010

    Check out the Surgery - Before, During and After forum on this discussion board.  There is a very lengthy thread on Post Mastectomy Pain Syndrome.  I've bumped the thread to the top of the Surgery Forum list for you.

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited November 2010

    I never had a mx, but understand a little about pain syndrom. I broke my wrist several years ago and was left with a condition called RSD in my right hand. After pain blocks, therapy and med's I only take when in a pain cycle. I was told to avoid any surgery because I would likely have a pain condition in any injured part of my body. They said that a percentage of people are more prone to pain symdromes. I am at high risk for pain symdrone. They said that the central nervous system is confused thinking it's in trauma when not. I had 2 lumpectomies, and when stressed I have burning pain and throbbing in my right breast, the surgical area.

    I don't know if this will you, but this is how I manage my rsd or pain symdrone. This was recommended by my physical therapist some yrs back for pain symdrome...helps :)

    Find a place where you can swim twice a week. Sit in the hot tub for about 5 to 10 minutes, then swim in the cooler water for about 15 minutes. Go back and sit in the hot tub for 5 minutes, then swim for another 10 to 15 minutes. IT HELPS! Can't swim...take a shower, where you are in cooler water for a few minutes, than warm water, back to cool ... then warm...for about 10 minutes.

    Don't stress...Refuse to argue or get into quarrels. Let stuff go...Pray

    Take pain med's when you are in a pain cycle. Important to get out of the pain cycle.

    Deferred Pain...get your mind busy on something else...find a project, paint, read a good book, or write. Do something that makes you happy. Endorfins do a lot to erradicate pain.

    Massages.

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  • michiganmom
    michiganmom Member Posts: 4
    edited November 2010

    Dear Beesie,

    I am so, so sorry this is happening to you. I have experienced the same thing -- following a right mastectomy 5 years ago. I finally have a team of doctors who believe me and who have really helped me. I have to say that I finally got my life back and most days are good. I have many, many tips for you. You can send me your contact info and I will be happy to call you. One thing to tell you right away: Some doctors say there is almost always a component of truncal lymphedema at work in PMPS. You don't get the classic swelling in your arm -- just your chest wall. And it's not always visible to the eye. I am much improved now that I wear the Belisse compression bra 24/7. It's only available by doctor prescription -- check it out online if you want to know more. It has been a godsend for me. I use some medication and other techniques, too... including some laser therapy that really helped me.

    I know how awful this is, but there's hope that you will get better with time and treatment. Talk to you soon, and best wishes to you. 

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