My LE---sigh

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allisontom911
allisontom911 Member Posts: 425
edited June 2014 in Lymphedema

Hi ladies,

I now have offical LE. This SUCKS. I have had minor swells here and there over the last almost 2 years but I had had more swelling this last month so I finally went and saw my LE Therapist. Oh yes....spots on my arm are 1-2 inches bigger than my last measurements in October 2011.  So she did the wrap on Wednesday and I went back on Friday and it did go down but not as much as she wanted it to. So we did a different kind of wrap. It was actually painful so I took off all the bandages and it was huge. My hand I can hardly make a fist it is so swollen. So I wore my sleeve for a while let the swelling go down a little. and re-wrapped.

I am so depressed. I just want to cry. How can this happen to me. SHIT. I have a 2 1/2 year old son, I work 50+ hours a week and I type all day. Typing with this freaking thing on my arm is super hard to work....I swear if I didnt have my son I would not have any will to live...I just honestly feel like that sometimes. I am glad I can come here and vent...thank you.

You gals were so helpful when I had my cellulitis last summer. I knew you all would understand. I want this gone. I see my LE therapist every other day..or that is what we have scheduled for the next 2 weeks.

I have been doing my LMD and breathing, opening my neck node and stomach with the breathing.

Ok I am done complaining.

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  • Outfield
    Outfield Member Posts: 1,109
    edited March 2012

    Allison, I was so panicky when I first noticed I was swollen.  There is much of life that could be affected by it.  I'm so glad your LE therapist is seeing you every other day - sounds like you'll have the opportunity to learn the tools to keep the LE under control.

    Have you tried sleeping with it elevated?  That worked really well for me while I was waiting to get into treatment.  Not super-high, just higher than my heart.

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  • allisontom911
    allisontom911 Member Posts: 425
    edited March 2012

    I did have it on one pillow last night. Maybe I will try 2 pillows tonight. I love my therapist. She is awesome and very well trained.

    Thanks for the reply!

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

    Allison, I hear your pain, and I've been there.Frown Here's what you need to know: it gets better. Honest.

    Come "complain" any time. Gentle hugs,
    Binney

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited March 2012

    Allison--It will get better.  Hang in there!  I am glad you like your therapist.  I know right now seems endless.  Keep us posted. Becky

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  • Marple
    Marple Member Posts: 19,143
    edited March 2012

    Hugs Allison.  There is a great thread GRRRRR I HATE LE.  You sure aren't alone feeling as you do.  LE really does suck.  I hope things are under control for you very soon.

    http://community.breastcancer.org/forum/64/topic/759378?page=1   (The GRRRR thread.)

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

    Allison, it does get better, it really does.

    I remember feeling so betrayed by my body and providers at the time, and needing so much reassurane--I called my LE therapist all the time. And pm'ed Binney.....

    This is grief--it's a blow. But you have a great LE therapist, you're gaining control, and soon it will be just something you factor in as you go about your life as a mom and at work and at play.

    Here's a link to emotional responses to LE:

    http://www.stepup-speakout.org/patoconnorcopng.htm

    Good for you to take off the painful wrap. 

    Kira

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  • allisontom911
    allisontom911 Member Posts: 425
    edited March 2012

    Thanks everyone. I was having a pity party last night. my hand is way worse than on friday. maybe i am compressiom sensitive// maybe just a arm wrap was ok. I will see what she says tomorrow.

    she got me back in shape after my mx in may 2010. i had terrible cording and after about 1 1/2 months of good MLD and her techniques I have never had another problem. I was doing rads then too. '

    I will keep you all posted. I have been reading your excercise thread. I just lift normal weights that I always have...is that bad. Never had any problems til now. I have always worn my sleeve and gauntlet

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2012

    Allison, Research shows that after BC treatment that puts us at risk for LE, our best strategy for weight training is to back way off and then rebuild strength very gradually, watching with every tiny little weight increment, to see if there's any kind of swelling, arm tingling, feeling of heaviness (which feels quite different from muscle soreness). 

    It's terrific that you have always worn sleeve and gauntlet to lift, but maybe, just maybe, lifting your normal weights was adding to your risk, even though you were accustomed to them.    Now that you have the LE diagnosis and are in active treatment, why not put your weights aside for a short time, and then when you have the LE under control, return to lifting, but rebuild gradually? 

    Better yet--talk with your therapist about it. She knows you, you trust her, and if for whatever reason she is not familiar with current thoughts about weight training and LE, let us know, and we will steer you toward some solid information you can share with her.

    Sending good thoughts your way for taming the LE beast speedily!

    Carol

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2012

    Hi, Allison - I'm so sorry about the LE.  It does really bite, but it sounds like you have a great therapist and you will get a handle on it, I promise.  You've handled bc, you can whoop this, too.  And you have a two year old and haven't run away yet, so obviously you are a brave soul.  Cool

    That being said, it sounds like (and hey, this is only my opinion.) your LE therapist wrapped you too tight.  Anytime I feel pain with a sleeve, bandages, etc., that's a sign that it's too tight.   When I first started learning how to wrap, I would get too aggressive with it and wind up with a minnie mouse hand and a huge arm after a night of too-tight wrappings.  And my therapist has a tendency towards that - I have to tell her to back off, and she does, and she's great, but I can now wrap my arm better than she can, because I KNOW what works for me.  And you will get there, too, I promise.  It just takes time learning how to manage it. 

     Hang in there and feel free to pm me if I can help you.  It gets better, I promise you.

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

    Suzy, you're brilliant! I also can wrap myself in a way that is more comfortable, and my LE therapist is amazing.

    I did wrap too tight and caused a blister, so I'm far from perfect...

    But, my LE therapist was very clear from the start that the wrap should never be painful: she doesn't snug up the bandages, but rolls them on with just enough pressure to lay flat, and adds another layer if she feels more compression is needed.

    The first person who wrapped me pulled the bandages tight and the pain was horrible, and I did end up with a Mickey Mouse hand.

    There was a study comparing higher compression wraps with lower, and the lower were more effective!

    We all want to wring that fluid out of there, but less is more, and pain is bad.

    Kira 

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  • C-squared
    C-squared Member Posts: 514
    edited March 2012

    Allison~ Good for you for staying on top of it:  doing the MLD and breathing.., seeing your LE therapist.  May consider something like Dragon Naturaly Speaking software to take the place of typing.  They often run specials so don't be intimidated by cost.  If you work with your physician, your employer may provide it for you as an accomodation under the ADA?  Good Luck!

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

    Scary, do you mean the Dragon Naturally Speaking is on special sometimes? Are there stores that sell it (the Mac store, say), or is it just available online? I googled it last night and didn't get it at all. I'd love to see it before I purchased it, but I don't know where to go for a demo. Any thoughts?

    Thanks,
    Binney

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  • C-squared
    C-squared Member Posts: 514
    edited March 2012

    Try ths link...,   http://shop.nuance.com/store/nuanceus/html/

    Might also try Ebay for older, less expensive versions.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012
    Thanks, Scary!
    Binney
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  • allisontom911
    allisontom911 Member Posts: 425
    edited March 2012

    just checking in go again to therapist tomorrow. i did talk with her about lifting weights and she thinks what i have been doing is ok for me. as she said everyone is different. she actually sees a gal who is a body builder, does competition and lifts huge amounts of weight. She just keeps on top of MLD.

    Hope i have good measurements tomorrow

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012
    Thanks for the update, Allison. Let us know how it goes tomorrow!
    Binney
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  • C-squared
    C-squared Member Posts: 514
    edited March 2012

    Binney~ were you able to access information on the Dragon Naturally Speaking program?  What did you think?  No confusion.., I did change my user name.  Laughing

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  • allisontom911
    allisontom911 Member Posts: 425
    edited March 2012

    no change in my measurements today. So she is in a way giving me a break from wrapping as my arm is getting ..some bad spots from rubbing. So I have a 30mg-40 sleeve and glove on. But I think it is to long and is really causing me some discomfort by my underarm. She then gave me a reid sleeve to try at night. I also have the foam with the channels (cant remember the name) to put on the under side of my upper arm. Large space in between as she said sometimes you can get blisters there...YUCK.

    So my hubby will put that huge monster of a thing on me tonight.

    I ordered the Lebed video and should have it on Tuesday so super excited about that!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012
    Cathleen, yes, thank you! I watched their video, which is amazing. I just wish I could try it, y'know?
    Binney
    PS--better screen name! I didn't like calling you "scary"!Laughing
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