-LE noticed measurements are low so they dismiss it?

Jackiebro
Jackiebro Member Posts: 51
edited August 2017 in Lymphedema

Hi,

Has anyone had LE with minimal measirement difference? i have ALL the symptoms... heaviness, throbbing, tightness, fullness like a blood pressure cuff on high in my upper arm.

I wear a sleeve for comfort & I see OT.... but I keep getting... " you are really sensitive " " I dobt think you have it, I just did a sentinel node biopsy of 3 lymph nodes "

Trust me, i woukdnt wear a sleeve! i am not making up this misery with my arm that never reprieves. does anyone else have this too?



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Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited August 2017

    I have been dealing with LE for 7 1/2 yrs. Am definitely sensitive to compression levels in my garments. I can only wear low level (18 - 21) compression garments as anything higher actually causes major swelling within an hour of putting on. I do not feel heaviness, throbbing, tightness or like a BP cuff is on my arm. I am a very active 'oitdoor' woman. For me - winter is a lot worse than summer for keeping my LE under control as with terms are brutal here and I can't get out and be as active as summer time. I do go to the Based Gym at least 4 times a week (if road conditions (snow) allows) but not as good as just doing all I do during summer.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2017

    Jackie, sure am sorry you're getting this run-around. Lymphedema comes in stages, and what's called "Stage 0" is actually a pre-clinical lymphedema--which means, no swelling is visible or measurable by most measuring methods, but there is excess fluid piling up in the tissues. This fluid back-up must reach a certain percentage before it becomes visible. BUT!!! This is the very best time to treat your lymphedema, because with proper care it can be kept from progressing. The symptoms of pre-clinical lymphedema include heaviness, throbbing, and/or tightness--or as some women say, even just a "funny feeling" in your arm.

    You can get a referral to a qualified lymphedema therapist from any member of your medical team, and here's how to find a well-trained therapist near you:

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

    Do not back down or let anyone deny your reality--advocate for yourself and get the best help you can. You're worth it!

    Gentle hugs,
    Binney

    (P.S.-Just as an aside, I find there's no use wasting energy lamenting the fact that you have to fight for great lymphedema care. Better to spend the energy patting yourself on the back for being proactive and competent. And also, chocolate helps!)


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  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2017

    Yes all those symptoms are totally real and not a fantasy. Its early lymphedema. I have little swell but most of those symptoms except I'm a later stage. I don't get a throb but ache like.Mine is not irreversible anymore. Watch your breast and trunk for those feelings to!

    Knowledge is power. You have come the theright place.

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  • Jackiebro
    Jackiebro Member Posts: 51
    edited August 2017

    yep I have it in the breast as well :

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  • Jackiebro
    Jackiebro Member Posts: 51
    edited August 2017

    thank u so much!! I will look for a LE therapist from that link. I have this depression because it changes your interaction or willingness to go and do things. And I usually just want to be at home. It is so uncomfortable :(


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  • hugz4u
    hugz4u Member Posts: 2,781
    edited August 2017

    Yes depression can rob our life. Don't let it. Do what I did during one year of cancer treatment. When I felt sad I would go to my list on the fridge and pick a item and do it. On the list: Ph a friend. Do something nice for someone. Journal, walk a block, read a encouraging bible passage. Read a book. Learn something. Take up a hobby and the number one combator, Exercise even one block. This all worked but you got to MAKE yourself do it!

    Join our exercise thread. Every step is helpful. We are encouraging there. No competition. Start right now. Walk indoors and report it to us. We can help. Exercise for LE is great. It gets lymph moving. Don't dangle arms though. Hold them like a jogger does.

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  • Jackiebro
    Jackiebro Member Posts: 51
    edited August 2017

    I am a former marathoner :) I ran for my depression & it worked great! I am getting back to exercise & training... but as u all know... baby steps. I will join the exercise thread.💕 Thank u all.. it can get discouraging and overwhelming when u have all the symptoms but no one can see it so they don't understand

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