Lymphedema and Reynauds?

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floaton
floaton Member Posts: 181
edited June 2014 in Lymphedema

I unfortunately now have both of the above (reynauds -a circulation problem diagnosed in my teens, and now right chest/arm/hand le diagnosed - a few months post r mastectomy and axillary clearance), and my le pt thinks that this is part of the reason I'm having such a difficulty time tolerating compression (my fingers turn purple and swell with off the shelf and even custom gloves, even sometimes with as little compression as an imak - I've been lurking/learning a lot here, thanks for all the ideas so far :)!

So basically I'm wondering if anyone else has both issues and, if so, if you've come up with any way to deal with it / control your le (especially hand swelling) without turning your fingers purple.  Thanks in advance!

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  • mcgis
    mcgis Member Posts: 291
    edited April 2014

    Hi Floaton.... I was checked some years ago for raynauds but wasn't diagnosed with  it. My fingers on my LE side with the glove do turn purple periodically. I'll tuck them under my leg or cross my arms and stick them in my arm pit to warm them up and that helps. My left hand fingers don't usually get cold like that. It's not all the time.

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited April 2014

     Hi Floaton and welcome to the board.

    I also have Raynaud's as well as LE.  

    Since Raynaud's phenomenon is a condition in which cold temperatures or strong emotions cause blood vessel spasms blocking blood flow to the fingers, it would seem in my uneducated opinion that this could indeed make fingers more sensitive to compression, since compression can also block blood flow.

    Do you suffer from pain and white/red/blue fingers when they are cold and you are not using compression?  Does this also happen your left hand?

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  • Mini1
    Mini1 Member Posts: 1,836
    edited April 2014

    I have Reynauds, so your post caught my eye. I do feel some tingling when in the cold, but not to the point of being bothersome. I didn't make the connection w/lymphedema. I will be paying more attention.

    Does anyone have swelling in their breast from their lymphedema? 

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  • floaton
    floaton Member Posts: 181
    edited April 2014

    Changing colors doesn't seem to happen in my left hand or right without compression unless I'm outside or really worked up, but will happen to my right pretty soon after I put a glove/sleeve on even if I'm warm.  My hands and feet are always cold and my family used to make fun of me that I need mittens starting in the fall :).  A standard 20-30 juzo sleeve will actually make my whole arm feel cold.   With wrapping I'm only able to put the slightest tension.  I guess it's just frustrating as it makes it difficult to know if I'm doing all I can to control my swelling without doing myself any harm.  This lymphedema thing is so hard.  

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2014

    I have this condition.  ( my mom had it as well)

    I had 2 prs of very pricey custon gloves made for me. HORRIBLE.  Turned fingers white !

    I went to a lightweight FARROW  ( brightlifedirect.com)
    It was a Godsend. I *highly* recommend  them. You can snip some of the tips on the glove to allow a tad more room as well.  I love them ( but I HATE gloves  :>)

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  • floaton
    floaton Member Posts: 181
    edited May 2014

    Thanks Purple for this idea!  My pt said that she didn't think I'd like the material of the farrow, and I've read they're hard/impossible to return, but since you're in a similar situation and like it, I just may have to cross my fingers and spring for one if the 2nd attempt at my custom glove (due in soon) doesn't fit.    

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited May 2014

    Floaton I just love the fabric of the Farrow gloves and had no problem returning the wrong size.

    Where will you be ordering from?  That sometimes makes a difference in returns.

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  • floaton
    floaton Member Posts: 181
    edited May 2014

    I've been ordering most of my sleeves through brightlifedirect, but their website says you can exchange for size but not a refund.  I also have some trouble with the web between my thumb and first finger swelling, so would like the option of return if it's bad in this one, but so many people seem to like it I think it's worth a try.  Do you know of anywhere that would take it back as a flat out refund?

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited May 2014

    try http://www.lymphedemaproducts.com/products/farrow...

    Call first to make sure it is returnable.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2014

    Floaton

    I have returned a farrow though admittedly , they were not too happy.  A phone call made things better. I *think* it was brighlifedirect.com  $86 as opposed to a $400 custom fitted glove that had my fingers turning white.

    They DID return one though.

    I LOVE the farrow .

    Good Luck to you!

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