Desperate for Advice & Help

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Pure
Pure Member Posts: 1,796
edited September 2014 in Lymphedema


Sort of desperate for some good advice. I have lymphedema in my back. It's located on the right side. ( non cancer side) but I had extensive surgery on this side. I get lymphatic massage and that always works...But a day or two later the pain/fluid/sweeling creeps back if I do something to set it off. Like sit at the beach or exercise. Of course the two things I love most... Anyway the pain starts gradual and turns into the worst burning/nerve type pain sometimes shooting around my ribs into my lower implant. I also have fluid in my abdomen.. I feel desperate for help and can't believe that I would actually have to live like this forever. I do lymph  massage 2 times a week. I do compression... I exercise. I use light weights..etc. I am just lost as to why it always comes back.. If I am lucky I will go 3 days without pain. Thank goodness when I take Advil the pain goes away but it's horrible. Anyone know of any good techniques or amazing lymphedema specialists that could help?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    Sounds like you might need to do lymph massage on a daily basis.  Can you reach the areas in your back?  I read somewhere about someone who used a paint roller to massage those areas.  Are you seeing an LE therapist who can give you advice on what to do between visits?

    What kind of compression garments are you using?

    It sucks to have to deal with this forever!!

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  • Pure
    Pure Member Posts: 1,796
    edited September 2014

    That is a good suggestion. The paint roller:) Totally creative. I can reach the area in my back. I am going to a therapist and doing self care. I don't wear compression all the time. But I am trying to get better about it...Thank you for the feedback.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited September 2014

    finding body compression is tricky...but not impossible. You may be able to add some swell spots or ridged foam or so thing to the garment.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2014

    Pure, there are lots of options for compression, and some are more comfortable than others so they're easier to use on a regular basis. You'll find some suggestions for truncal compression by following the links at the bottom of this page:

    http://www.stepup-speakout.org/breast_chest_trunck...

    I use the WearEase cami, occasionally with a Swell Spot tucked in as needed if I flare and experience pain. Maintaining the compression will go a long way toward eliminating your pain, so it's crummy, but it's sure a lot better than the debilitating effects of this kind of pain! 

    Please stay in touch and tell us how we can help,
    Binney

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    I use a breast binder (from EAB Medical)  and swell spots, most of the time. That helps with my truncal issues. It's an experiment to find the best solution.

    Keep us posted.

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  • redheeledwomen
    redheeledwomen Member Posts: 97
    edited September 2014


    I've been curious to know how to protect your arm or if you even need to when flying?  I had lymph nodes removed on my left arm and concerned about lymphedema.  I am having a Lymphedema consult on 9/15 but not really sure what the ask or to look for.  I've been told Lymphedema can come on even years after surgery.  Does anyone here have any suggestions?

    Thanks.

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  • Pure
    Pure Member Posts: 1,796
    edited September 2014

    Hi There,

    Thank you guys for your wonderful responses. I didn't even know about swell spots. That is exactly what I need I think... I will let you guys know how it goes:) RedheeledWomen...You should get a sleeve and wear while flying just to be on the safe side.

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  • redheeledwomen
    redheeledwomen Member Posts: 97
    edited September 2014


    Thank you Pure.  I will look into sleeves and get educated as soon as possible.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited September 2014

    pure, have you considered getting a pump?

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