lymphedema ?

jdubious
jdubious Member Posts: 113
edited March 2014 in Breast Cancer #1
Hi everyone,
I've been a good sport about my bc treatment (mastectomy, A/C and taxol chemo, just starting radiation)and my outlook has been pretty positive. BUT! I have developed lymphodema and I'm feeling pretty whiny about it. I'm still bandaging and the bandages make my wrist and elbow really sore. I feel itchy all the time and my skin is like sandpaper. I can't wear most of my winter clothes because the sleeves don't fit over the bandages. Trying to get comfortable at bedtime is almost impossible. GRRR! Does anyone have other suggestions for dealing with this? I'm ready to throw the bandages out and take my chances with the swelling.
thanks for your help!
jill

Comments

  • cruf
    cruf Member Posts: 908
    #2
    Hi Jill! I don't have lymphedema but I know there are sleeves called Jobst that can be measured and fit for your arm and should be easier to help with the swelling. I don't know if it will help with your itching and dry skin but it is a consistent pressure and should help more with the amount of swelling. Ask your MD about them. They are expensive but insurance should cover it . The only way to manage swelling is consistent wrapping . Be patient. Hopefully, things will get better. Keep us informed. HUGS!! Cathy
  • krisrey
    krisrey Member Posts: 194
    #3
    Hi Jill,
    I don't have full blown lymphedema, but I can tell when I overwork my arm because it gets all tingly and feels all puffy. I lift weights and run and a lymphedema expert told me I should wear the sleeve anytime I am making my blood really pump. Well I don't wear it when I lift but sometimes I wear it for the whole day after if I can tell its overworked. I don't really think to wear it unless I get that funny feeling in it.
    I got two sleeves from a medical place that the insurance covered. It really helps my arm feel so much better after I overuse it.

    If you don't have one of these sleeves, just contact your Medical Onc nurse and she can write out a presciption. I have no problem wearing my cloths with the sleeve, in fact you bearly even know its there it even blends into the skin tone.
    I hope your arm starts to feel better, I know it is no fun getting through all the chemo and rads then having to put up with lymphedema!
    Kristen
  • tlmac
    tlmac Member Posts: 272 Member
    #4
    Hi Jill, One of my close friends from Reach to Recovery is battling lymphedema. In addition to the compression sleeve and occasional bandaging, she also goes to physical therapy with a certified lymphatic therapist (make sure they are certified). A portion of her 20 minute session consists of gentle tissue massage to stimulate the movement of lymph that has built up. I think she calls it decongestive physical therapy. She was referred by her doctor and was told that, in addition to the discomfort and inconvenience, there are physical dangers associated with lymphedema left untreated. Fluid and protein can slowly collect in soft tissue eventually producing a change called fibrotic tissue. It can also provide a target for bacterial infection. If you haven't already, check with your doctor about physical therapy with a specialist. Good luck.
    terri
  • doc424
    doc424 Member Posts: 10
    #5
    Hi Jill.
    In Greece we use in addition to the compression sleeve and occasional bandaging, Daflon capsules, which is micronized diosmin and hesperidin. I Know that in your country is not FDA approved, but you can find the ingredients in Health stores.
    thanasis
  • jdubious
    jdubious Member Posts: 113
    #6
    doc424 said:

    Hi Jill.
    In Greece we use in addition to the compression sleeve and occasional bandaging, Daflon capsules, which is micronized diosmin and hesperidin. I Know that in your country is not FDA approved, but you can find the ingredients in Health stores.
    thanasis

    Thanks for all your ideas. I have been seeing a physical therapist (weekly) and doing massage at home. Because of my schedule, I wasn't able to see the therapist for a few weeks, but I have an appointment to see her next week. It is just so frustrating to put up with on top of everything else! I can't wait to get a sleeve!
    jill
  • littlelindalu
    littlelindalu Member Posts: 25
    #7
    There is a wonderful book "Staying Abreast" A written by a BC survivor (Annie Toglia) that has a lot of tips and useful information. Her website: stayingabreast.com tells more about it.

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