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  • packergirl
    packergirl Member Posts: 81
    edited February 2010

    (((((Laura)))) I have a wonderful nurse friend who has FIBRO and had BC. It is not in anyone's head--- grrrrr that anyone would say that to someone not feeling well----ugh. Anyways PM me if you want me to get in touch with her and see if she has advice on how this should be tackled.

    So sorry sweetie

  • Estepp
    Estepp Member Posts: 2,966
    edited February 2010
    PS... any sister that needs to keep cutting on a radiated breast... PM me and I will share with you how Oxygen therapy, at your local hospital, can help you heal! It is really all we have to try.. prior to going ahead with a Flap surgery.
  • Estepp
    Estepp Member Posts: 2,966
    edited February 2010

    Thanks Packer... I will call you this weekend... I need to get some educated answers. I would LOVE to have a " DX" for this... I just wish it was not the "fibro" one.... I will call ya. TY TY TY

    Edited to add:

    Those in my friend/family group that are nurses.. and the one MD... did not tell me this at this time... but in times past as we talked about others who were DX with this...I do wonder what they would tell me now..??? You KNOW I am going to go find out...LOL

  • crusader1
    crusader1 Member Posts: 114
    edited February 2010

    Samiam..  Thanks for the sweet comments. I know so many have had reconstruction problems. I am only a year out of my first failed TE...seven months out of my second failed TE. and this is my third put in in November.

    Ladies,

    I like my two Plastic Surgeons..This office does not have nurses and I guess I am lucky because at each visit I get to see both. Both also operate on me. Strange ..not really as they both get paid big bucks. and I like the attention.

    Looking forward to the luck of the Irish on the 17th of March( my exchange)

    Hope all are doing well.

    Hugs,

    Francine

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010

    Deborah -- that's a great picture on the ebay site.  I confess I had never heard of Lululemon until I saw that article... but what I love about that Ta Ta Tamer (besides the name which makes me giggle every time I type it) is that it seems to lift and separate instead of what my current sports bras do -- mash and unaboob lol.

    I am going to buy one ... especially with the Deborah AND the Val endorsement :)  Will write a review once I have it.

    Laura -- ha!  Me a cheerleader... such a funny idea if you knew my life (I was the girl in high school who wore all black and rhinestone earrings... very dramatic, very NOT a cheerleader).  But I think since I grew up I did migrate into that place (but still wearing black :). 

    Francine -- I am certain the Irish will be sprinkling luck all over you on March 17,

    Lilah

  • juliempw
    juliempw Member Posts: 191
    edited February 2010

    Laura, My thought on Fibro.  Yes, perhaps some of it is in the mind, but doc's think everything is in the mind until they can prove it and research shows that things in the mind, become real.  So is it the chicken or the egg?  Who cares, it exists!!  I read a book a few years ago written by the doc who founded the national fibro something or other. I mentioned it a couple weeks ago but it was a fabulous book.  From Fatigued to Fantastic by Jacob Teitelbaum, M.D.  He gives suggested supplements based on your specific symptoms.

    Geena, I'm so sorry to hear that you're feeling certain, already, that you'll need revision.  You are an amazing woman, you'll do fine but ugh I'm bummed for you that this didn't come out perfect!  I'm thinking I may need some more work but am not certain yet.  Not sure if I'm in denial or just waiting.  I see my PS tomorrow and I want to ask him about my flaws but I'm pretty sure he'll just say "we just have to give it time to see what they're going to do".  Waiting, I'm not so good at that.  We'll be waiting to hear how things go tomorrow.

    Lilah, thanks for the bra link.  Looks like a good one and worth the purchase just because of the name! 

    Francine, You can't go wrong with St Patty Boobs (or am I thinking St Pauli Girl).  Either way, I'm sure they're related so the date is good!  :-) 

    Val, I can't wait to see more pictures!!

    Jean, I think about you a lot and what a rough time you're having.  Hang in there! 

    Julie 

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

    Thank you Julie.. I just do not have the fatigue.. OR I do and am SO DARN Hyper in normal life... that fatigue is like others..." Normal"...who knows...

    Lilah... you rebel in black... you were a "team player" but in the closet ALL THESE year huh?

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010

    LOL Laura

  • FACECRAFTER
    FACECRAFTER Member Posts: 433
    edited February 2010

    (((LAURA)))  Fibromyalgia is:

    Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

    Widespread pain and tender points
    The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

    Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

    • Back of the head
    • Between shoulder blades
    • Top of shoulders
    • Front sides of neck
    • Upper chest
    • Outer elbows
    • Upper hips
    • Sides of hips
    • Inner knees

    Fatigue and sleep disturbances
    People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

    Is this what you're feeling?  this is the definition by the mayo clinic.  You said you were in pain (and I am so sorry) but I don't recall you saying you had the rest of these symptoms..(I hope not.)   I have had two friends with fibromyalgia, and they were miserable...and really tired all the time.  I hope this is not you.  Take my energy!  I need sleeping pills to go to sleep...  Hang in, JUDY 

  • FACECRAFTER
    FACECRAFTER Member Posts: 433
    edited February 2010

    Here is the link.  By the way- 11 of the 18 'tender points' are considered positive for fibro.

    http://www.mayoclinic.com/health/fibromyalgia/DS00079

    love ya!  JUDY

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

    Judy says....

    (((LAURA)))  Fibromyalgia is:

    Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

    Widespread pain and tender points
    The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

    Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

    • Back of the head ...yes
    • Between shoulder blades .....OMGOSH yes ( one of the hardest)
    • Top of shoulders .......OMGOSH yes... ( one of the hardest)
    • Front sides of neck ...tender all the time... like an infection is coming.. yet does not come
    • Upper chest .....yes... blamed on Reconstruction and pocket work
    • Outer elbows ....no pain there
    • Upper hips ......... OMGOSH yes.. this is what got me another bone scan.. CLEAR.
    • Sides of hips ... OUCH to the touch
    • Inner knees ... no pain

    Judy.... I cannot sleep without pills.. it is a nightmare.. I even took pills the last night the Ta Ta's were here so I could sleep a few hours...

    Also.. all my fingers and toe bone/joints hurt.. My poor fingers feel like I have the crippling arthritis.. and I do not.. the bones and joint hurt to touch. When I get out of bed in the morning. it takes time to even walk to the bath.me legs and ankles.. and not toes.. WILL not move. I even bought Ortho shoes to see if it would help.....ugggggggggggggggg I am tired

    We'll see... I just wish I could have something that could be treated/cured... not something... that soooooooooooooo many people today make fun of......

    If you knew me... you would know... that if they tell me I have Fibro... I will NEVER talk about it... but to dh and you all.

  • NVDiane
    NVDiane Member Posts: 151
    edited February 2010

    Oh Laura, it makes me so mad that you have to be in pain, after everything you have been through!  It is so not fair....grrrrr.....I wonder if those doctors are saying you have fibro, just because they don't want to admit that radiation can make you hurt so much?!  OK, I know I'm way too cynical, but I don't want you to hurt...sniff......

    Believe it or not, there is actually a magazine about living with fibro!  I'll try to find one and send it to you, so you can see if you think you have it or not.

    I hurt for you, sister.

  • FACECRAFTER
    FACECRAFTER Member Posts: 433
    edited February 2010

    Oh you poor dear!!  We'll see what the Dr. Says, but don't discount Lyrica, it is the first drug approved to fight fibro.  And fight it you will!! And win!!  We're with you honey.  It can be treated and that's whats important...

  • Lilah
    Lilah Member Posts: 2,631
    edited February 2010

    (((((Laura)))) It hurts just to see your "yesses" to that list.  I am so sorry.

    Lilah

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

    OH MY....I have been researching the thrilling topic of "Tamoxifen and Fatty Liver Disease" for the past hour or so, while all of you are having fun over here!  If any of you take Tamoxifen...someone started a thread on this topic under the Canadians thread.  Very compelling topic.  Worth investigating further.

  • Adnerb
    Adnerb Member Posts: 727
    edited February 2010

    Colleen!  Welcome back to reality! Hope to see you again at Sharp.

    Take care...

    Brenda 

  • Adnerb
    Adnerb Member Posts: 727
    edited February 2010

    Laura, so sorry to hear about your aches and pains.  Hope you get to the bottom of this problem.  BTW, what is oxygen therapy?

    Take care.

    Brenda 

  • Angel40
    Angel40 Member Posts: 47
    edited February 2010

    Laura,

    here is another link for pressure points

    http://www.squidoo.com/what-are-fibromyalgia-pressure-points

    my coworker has fibro and she said this fibro vitamin with magnesium and malic acid help her a lot. maybe you could ask your rheumatologist about this IF it is really a fibro.

    http://www.e-tyh.com/productlisting1a.html  (fibro care)

    Hope you feel better.

    Edith

  • crusader1
    crusader1 Member Posts: 114
    edited February 2010

    Julie..you are too funny. I wouldn't mind St.Pauli girl boobs. Even though I don't drink beer. I see the beer is from Germany but the boobs look great.

    Any more takers?

    "

    Laura- hope you get your fibro problems resolved. None of us need extra problems ..

    Stay strong.

    Hugs,

    Francine

  • juliempw
    juliempw Member Posts: 191
    edited February 2010

    Laura, I don't want to push that book on you but fibro and fatigue are closely related so the book addresses both areas, the title is deceptive.  You might take a look at it next time you're in a book store.  Just want you to feel good, you deserve it!

    Julie 

  • juliempw
    juliempw Member Posts: 191
    edited February 2010

    Francine, LOL!!!!  Great post!

    Julie 

  • val61
    val61 Member Posts: 969
    edited February 2010

    Great pic, Francine!!  Believe it or not, I think a few of us DD girls (Deborah?) aren't too far off!!

    I'll be away from the computer for a couple of days, as my ps gave me clearance to travel to watch my "baby" - who turns 18 next week, oh my! - compete in the state swim meet!  I missed it last year because I was still recovering from my bmx and couldn't travel.  I'll probably pass your way, Texas357 - a few hours in the car, but more hours in the bleachers....  I'm bringing my stadium seat and my pink beanbag arm pillow - won't I be quite the spectator?  I just hope I can wean off the vicodin soon so I don't fall over...lol.....

    Deborah - what's the scoop about fatty liver disease and tamox?  tried to find the thread, but didn't see it.....one more thing for us to worry about.....

  • ajones120961
    ajones120961 Member Posts: 21
    edited February 2010

    Where can I post my picture's to my exchange.... I would love your response on what you think!  I am not happy but going to a new PS next week... Cross your fingers he works out.  I appreciate Val for all her help. Thanks!Embarassed

  • Kristinka
    Kristinka Member Posts: 223
    edited February 2010

    Just sending pain free wishes to Laura.  You seem like such a sweetheart, and you shouldn't have to deal with such pain.

    Kristen

  • kbram
    kbram Member Posts: 63
    edited February 2010

    Francine....great pic, lol.!!!!!

    Laura, ....how are you feeling today, sweetie??

    Julie....I think I will pick up that book next time I'm in a bookstore.  Any help is appreciated and I think we have fatigue from many things after going thru BC.  From multiple surgeries, chemo, rads, tamox or AI, sometimes it is hard to pinpoint.  I am very open to anything that will help.  Sometimes I also believe the comercial that says "depression hurts".  It comes at us from all sides.  Anyway, anything to help!!

    Have a great day all!!

    Hugs, Kathy

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

    ajones:  You need to contact Timtam and request permission for entrace to our very private and protected pictures forum~

    http://community.breastcancer.org/member/11047/profile

  • whippetmom
    whippetmom Member Posts: 6,028
    edited February 2010
    Julie:  Check your email~!
  • whippetmom
    whippetmom Member Posts: 6,028
    edited February 2010

    Val:

    Here is the link: 

    http://community.breastcancer.org/forum/55/topic/747800?page=1#post_1704556

  • weet
    weet Member Posts: 10
    edited February 2010

    Hey Girls

    I just bought the tata bra at lulu lemons and it is really nice. It doesn't flatten at all.The only thing is I had to by a larger band size. I usually take a 34C and had to go up to a 36C. The cup size is perfect, it almost matches up my miss matched foob and boob.

     Margot

  • JustmeAlicia
    JustmeAlicia Member Posts: 629
    edited February 2010

    Laura ~ so sorry you are having all of those symptoms on the list and getting told it is in your head.  grrrr.  Hoping you find some much deserved relief. 

    Love that St. Paulie girl picture !  :)

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