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Post Mastectomy Pain Syndrome (PMPS)

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Comments

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    Thanks to both melm & wildgirl...;)

  • Lovegolf
    Lovegolf Member Posts: 75
    edited September 2013

    The base is just neutral white cream, no smell no added chemicals.  It kicks in after 15 minutes or so

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    I just took my 1st dose (1- 300 mg.) of Gabapentin about 1 hour ago...I'm supposed to build up to 3 capsules a day by Day 7.

    I'm ALREADY nauseous...

    Is this normal?



    Thanks...

    Violet

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    Also, once I'm on 3 caps per day, can I take them all at the same time at NIGHT so I won't be so tired in the day?



    Violet

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    Posted in wrong forum a min. ago...

    About an hour & a half after taking my 1st Gabapentin last night:



    Woozy, feeling like I'm gonna tip over, starving, blurred double vision...

    These are normal SE's at first

    right? Sheesh! There's no way I'm going to be able to drive for a while!!!

    AND: Did this med affect anyone's libido?



    Thanks.

    Violet

  • MaggiPgh
    MaggiPgh Member Posts: 34
    edited September 2013

    Hi Violet.  yes, there is an article done by JAMA (Journal of American Medicine), November 2009. It's called Prevalence of and Factors Associated with Persistent Pain Following Breast Cancer Surgery.  It was the first article that my PCP found one year after my surgery that explained all of my symptoms. There are many others that I've found over the years.  I think if you just Google Pain + Breast Cancer Surgery, you'll get quite a few that will not cost you anything.  Be careful and go to only reliable sources.  Hope this helps.

  • MaggiPgh
    MaggiPgh Member Posts: 34
    edited September 2013

    Yes i take pain meds..tramadol 50 mg.as needed and 7.5 percocet for really bad pain. 

    I've been busy talking on the facebood page:  Post Breast Therapy Pain..if you do facebook you should join.  It's a closed group, but you just click on "become a member" and then you can talk daily to everyone. This discussion board is OK, but people don't talk daily.

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    Maggi,

    Thanks. I joined that FB group but didn't see a category I really fit in...I think the BMX one is no recon...? I wasn't sure where to post...?

    Violet

  • violet_1
    violet_1 Member Posts: 335
    edited September 2013

    Also I found a great 2012 or 2013 HUGE academic paper online but you have to subscribe. ..oy!

  • pamelahope
    pamelahope Member Posts: 41
    edited September 2013

    Hi all!!! I had BC in May, 2012 and had a BMX and going through reconstruction and am fine.

    Unfortunately, my sister had a prophylactic BMX with recon because of BRCA2 and developed post mastectomy pain syndrome.

    She had to go on Cymbalta, tried PT, accpuncture, etc.

    Can someone please help me give her good treatment advice? She lives in NY. I saw someone mention Dr. Ahn. My friend went to her and loves her for recon, but can anything be done for the awful tightness she feels.

    She even switched out her implants for asmaler size and switched to saline.

    What are her best treatment options? I want her to have a good quality of life. She never would of had a MX if I had not gotten cancer. I feel bad for her. Pam

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited September 2013

    Pam, I am not sure if myofascial release would help, not sure of all the issues with implants. I did not have reconstruction, and have had good relief with a superb physical therapist who has done myofascial release over the scarred areas. As the tissue heals, it often gets stuck down to each other, leads to adhesions, so with the release, the PT does gentle sustained pulling with mild pressure in different directions. I find that if I continue to be more active, do my own stretches every day, it helps keep the tissue soft and moveable, and much less painful. I still have pain, but it is toward the lower end of the pain scale rather than the higher one, and I rarely have to take pain pill more than once a day for it (and last week even missed a few days completely!). So you might see if her PS can recommend someone who works with patients with implants - the last thing you want is a PT who does more damage than helping. Best wishes to you both!

  • lala1
    lala1 Member Posts: 974
    edited September 2013

    Pam--I second Linda-n3. Definitely find a good massage therapist who can do myofascial release. It was a life saver for me! I had ongoing daily pain and tightness along with muscle spasms for 6 months following my mx. Once I started with massage therapy, I got off all pain meds. I went once a week for 3 months along with joining a cancer class at a gym where they taught me how to do circuit training to help with keeping my muscles supple. They also had a warm water pool where I would float on a noodle and do the breast stroke to help with stretching and loosening my shoulder and pec muscles. Now, 4 months after starting therapy, I am almost 100% pain free. I have days periodically where I have to stretch a bit more or do some of my own massage at home, but for the most part, I feel really good. I'm convinced the gym and massage made all the difference!

  • mlp730
    mlp730 Member Posts: 27
    edited October 2013

    Pam,

    My story is pretty long and it's been awhile since I posted on here but I've been seeing a dr. in Baltimore, Dr. Eric Williams, who is a peripheral nerve specialist. Like your sister, I have this terrible tightness for 4 years now and am just so tired of the band aid meds that really don't help anyways. You might share this with your sister. I have decided to have surgery after diagnostic nerve blocks really seemed to help me, especially the most recent which was U/S guided. I am extremely nervous about another surgery but I have talked to two patients of Dr. Williams who have had the surgery. One of these patients said it definitely was a big improvement and the other has no discomfort at all, the iron bra is off!! I found this information on Facebook - Post Mastectomy Pain Syndrome. The surgery is a resection of the intercostal brachial nerve and muscle implant. http://www.baltimoreperipheralnervepain.com/ Baltimore is not that far from New York and it may be worth a consult.  Mary Lou 

  • melmcbee
    melmcbee Member Posts: 371
    edited October 2013

    MaryLou, I just had 3 intercostal nerve blocks Tuesday. I felt completely numb afterwards and he said that was from the lidocaine. Today the soreness is comong back in some areas. He said to give it 5 days to gauge how it will be. How did yours work? Thanks for any help.

  • shabby6485
    shabby6485 Member Posts: 48
    edited October 2013

    Hello,  I had a preventative double mastectomy last aug with implant exchange in dec.  I am having severe iron bra syndrome.  I am currently trying myofacsial release but have had no relief.  This is making me very depressed.  Would this be considered PMPS?  I have little support regarding this.  I am sick of being uncomfortable all the time.  No other pain issues just severe tightness and fullness under the arms.  Since I am a year out, I assume this is it for me?  Ugh...

  • ginger48
    ginger48 Member Posts: 1,437
    edited October 2013

    I am two years out and am just starting to get some relief with mayofascial release and stretching by my PT. I am hopeful I will eventually lose the iron bra...

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013

    Hi All. Just want to say the Lidocaine patches work pretty dang well!!!!!

    You only wear for 12 hours a day and they stay on but don't hurt when peeled off...;)

    Maybe I can even tolerate a seatbelt now! True test will be tomorrow when I drive for over 1 hour to my Beau's house...:)



    Violet

  • melmcbee
    melmcbee Member Posts: 371
    edited October 2013

    Hi ladies today would be day 3 after the nerve blocks. I fell better. I am not having the shooting pain down my side under armpit. I am still having minor soreness in a few spots under my breast and medial at the sternum. I will use the patches and tramadol for that. I go back to work Monday so we will see how it holds up to my job requirements. Healing hugs to all.

  • pamelahope
    pamelahope Member Posts: 41
    edited October 2013

    Thank you guys!!! I forwarded this link to her. It sounds like she should continue with the myofascial release. Pam

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013


    Mel,


    Did nerve blocks hurt?


    V

  • melmcbee
    melmcbee Member Posts: 371
    edited October 2013


    It wasnt too bad. I wouldnt say that I would want to do it everyday but the relief I feel is worth it if it last awhile. He did 3 different levels according to where I was hurting. He said if it helps then we can talk about doing something more permenant like killing those nerves. I dont know if i will do that but we will see. Healing hugs

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013


    Thanks Mel.


    V

  • pamelahope
    pamelahope Member Posts: 41
    edited October 2013


    I also want to say the surgery in Baltimore sounds promising. She is not up for more surgery, worn out from all this, I might research and ask my doctors for their opinion. Thank you for sharing thst. I really appreciate it. Pam

  • mlp730
    mlp730 Member Posts: 27
    edited October 2013


    I guess I'm confused about these diagnostic nerve blocks. Dr. Williams had explained how they work like Novocain. They are not meant to last for an extended period of time. What I had was just diagnostic and lasted for about 6 hrs. He used something in the lidocaine family (starts with M, sorry can't remember name). He used ultra sound to guide him to troubled nerves (T3, T4, and T5 areas). What he is doing is a resection of the Intercostal Nerve and will implant nerves into muscle. This is the best I can describe in lay terms. Basically, he is killing the nerves. I honestly can say I'm extremely nervous about another surgery, but on the other hand, I'm so very worn out from chronic pain. On Monday, I will be 4 yrs out from my bmx and this is way too long to feel this way and way too long to be on meds that are really just putting a Band-Aid on things. Keep me in your prayers and maybe this will be the answer for all of us who wear the "iron bra"

  • melmcbee
    melmcbee Member Posts: 371
    edited October 2013


    Mlp, sending healing hugs to you. I know this surgery will be the answer to your pain.


    As far as nerve blocks go, there are several different kinds of medicine that can be i jected and some last longer than others. If it is diagnostic then I am assuming they are usi g the lidocaine just to see if the right nerves are numbed so they know which ones to kill or do surgery on. Praying you find relief soon.

  • mlp730
    mlp730 Member Posts: 27
    edited October 2013


    Yes, that is exactly what he is doing. He used something like Marcaine (not sure of spelling). He injected this into the areas that I feel the most discomfort. When he used the ultrasound to guide him, it was much more accurate and it worked great! I honestly felt pain free!

  • wirdgirl118
    wirdgirl118 Member Posts: 139
    edited October 2013


    Isn't it great! I had ten comfy, pain free minutes and felt normal!

  • Atouchbetter
    Atouchbetter Member Posts: 2
    edited October 2013


    Hi All,


    I am wondering if those of you who use the keta/gaba/lido cream or other compounded creams are able to get your insurance company to pay for it. Mine typically does not pay for compounded prescriptions. I got a quote from my compounding pharmacy and it was high! Over $100 for just an ounce!


    I have had neuropathic pain on the chest wall and under my arm since my UMX 3 years ago. In the beginning, I could not even wear any clothes on the upper half of my body. It finally calmed down enough that I could wear a coobie bra and soft material shirts. Still was constantly aware of it. Then I just had a redo of my reconstruction (TE's again and Mentor CPG a.k.a. gummy bear) and that seemed to kick it up again, especially since my areola tattoo last Monday and the oral gabapentin is just not knocking it down.


    Thanks,


    Connie

  • bren58
    bren58 Member Posts: 688
    edited October 2013


    Connie, I was having continual pain after my ALND surgery and went to a specialist who prescribed a topical pain cream (keta/gaba/dicl +more). Doc sent the script off to Derma Tran solutions, which is a compounding pharmacy. If you agree to keep track of your pain levels over a couple months and fill out their survey, you can get the cream for free (or close to free). At least the first 2 tubes were free, not sure what happens after that as I just received mine a few days ago. It might be worth looking into.

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited October 2013


    Bren, how long does your cream last, i.e. when does it expire? Mine expires in 2 weeks from the compounding date, so my doc has to write a new Rx every 2 weeks - has to be an original as the ketamine is a controlled substance, no refills allowed. So I have to physically pick up the Rx, take it to the pharmacy, then go back the next day to pick up the compounded cream. I have a $5.00 copay each time, which is not bad. It takes about 25-30 minutes to rub the cream into my fingers. Does it rub in quicker on the chest? My PCP has suggested I try it on my chest, but it is such a mess and I just don't have that much time to deal with it. The cream I have is for peripheral neuropathy of my fingers.

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