Key links to Lymphedema pages on bc.o site

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited August 2011

    Pammy

    I am so sorry you are having such a tough time.  I thought my arm and hand LE was bad but yours is even worse!  Hugs!   Only thing I take for pain when it is in my arm is Tylenol. I do my PT massages but not sure what to recommend for the chest/back area.  Did you see a Physical Therapist?  If not, make an appointment ASAP.  I am sure they give you some tips.  Hopefully someone else on here will be able to offer help as well.

    Sorry! 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011

    Pammy, hello!

    I hear you on the pain.Frown Truncal LE can be really painful, and it's a nerve pain so most kinds of pain meds don't help.

    I can't tell from your post if you've ever seen a lymphedema therapist for this, but the only relief from truncal pain is getting the LE controlled -- which means finding a therapist who can do some Manual Lymph Drainage massage and teach you to do it too, and then help you find the right kind of gentle compression for your chest and back. If you don't have a therapist, or the one you have is not helping, here's how to find a well-trained one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Here's more information about truncal lymphedma (at the bottom of the page are links to some garment ideas):
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Please keep us posted, and tell us how we can help. Gentle hugs,
    Binney

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  • PammyJane
    PammyJane Member Posts: 8
    edited August 2011

    I went to my breast Dr. 2 times. He says it's scar tiss. and nerve pain. I just cried out loud in his office and left. A couple days later, his nurse call and set me up with ct scan, bone scan 8-29-11. and a PT on Wed. So I haven't gone to PT yet. Fri. I was near the PT place and went in hoping I could talk to some one. I got to talk to 2 ladies for about an hour! ANd didn't have to pay co-pay!! They looked at me and said it was T LE! I asked them if if could message it. They said no, not untill the scans came back. I'm really mad at my breat dr. I had an opointment with my Fam Dr. I was kinda upset and all she did was give me something that would knock me out!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011

    PJ, hooray for the good therapists!Cool They're worth their weight in gold. So affirming, too, to have somebody who's not thinking it's all in your head!Undecided

    Don't waste too much energy being mad at your doctors -- there are very few who know much about LE. It's not much covered in their training, unfortunately. Once you've got this all squared away you can start educating them.WinkLaughing

    Please keep us posted. Scans are nerve-wracking -- hang in there!

    Hugs,
    Binney

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  • PammyJane
    PammyJane Member Posts: 8
    edited August 2011

    I'M NEW TO ALL THIS. IF I SEND THIS MESS. WILL EVERYONE GET IT?

    HAD CT AND BONE SCAN DONE TODAY. THEY SAID I HAD A BLOOD CLOT IN MY LUNGS AND CANCER IN 4 RIBS. I GREAT! FINALY IT'S GETTING RESOLVED!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    PammyJane, how are you doing? Please let us know!

    Gentle hugs,
    Binney

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  • nancyj1946
    nancyj1946 Member Posts: 16
    edited March 2012

    This isn't a reply, just a question.  I had a double mestectomy in Sept, 2009.  I was diagnosed in August of that same year with IlC grade 3.  about 6 months later I got lymphedemia. When I had my breast surgery(my breast was very heavy and they tied back part of the skin on both sides.  My cancer was in the left breast, and I don't know if this makes much scense, but on the side where they took the lymph nodes out, under neath my arm is filled with the same fluid that is in my lymphedemia arm.  It swells up all of the time.  I recently had a bout with the flu, and I ran a low grade fever. After my temperature went down, I have been having a lot of bad pain in my side and it is going into my back. When I got up this morning that place underneath my arm is so painful that I took a pain pill. IThe medicine keeps the pain down some, but when it wears off. I start hurting again.  Can some one out there tell me what is going on. I am grateful for any input anyone has and if I am making any scense at all

    Nancyj1946

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Nancy, hello!

    I'm so sorry you're struggling with this now! You didn't say what kind of treatment you got for your arm lymphedema, but if you have a good lymphedema therapist you need to set up a time to see her about this new swelling. It could be truncal lymphedema, which needs some help from the therapist to work out a new self-Manual Lymph Drainage routine that will work to keep it in control.

    Here's information about truncal information while you're waiting to see your therapist:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    If you don't have a therapist, or the one you had before wasn't knowledgeable about lymphedema, here's how to find a  fully trained one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    With proper treatment and consistent self-care, you should get real pain relief and be able to keep it that way. I'm just getting over a nasty bout of flu, too, and my lymphedema flared a lot in my chest and back. Kinda sneaks up on you when you're down!Frown

    Please keep us posted!
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2012

    Nancy, if the area is hot or red, it could be a skin infection called cellulitis, so please keep an eye on it and if you have any questions, see a doctor ASAP.

    Kira

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