question about truncal lymphedema

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jennifersomewhere
jennifersomewhere Member Posts: 38
edited June 2014 in Lymphedema

I am starting to think I may have truncal lymphedema and I am going to ask my doctor about it. I have swelling and pain and a rash on the side where I had lymph nodes removed.  Here is my question. If I find out that I have it, will I be able to lift children? I work in the church nursery and even way more important... I want to be able to lift my grandchildren. I will be sad if I can't work in the nursery anymore but it will totally break my heart if I can't lift my grandkids. :(

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

     If I find out that I have it, will I be able to lift children?

    jennifer

    So sorry to hear you ae experiencing these problems!

    You'll want to get a  full eval., by a good LE therapist to be certain.

    Please check out this website that the well informed and generous ladies on this forum have created.  It's the best of the best :
    http://www.stepup-speakout.org/

    To answer your question in a word :  maybe.

    Some of our ladies lift weights, but have done so very carefully and very gradually over a long period of time , to build up.  Others , like myself, would not dare to lift my precious 2 1/2 yr old granddaughter.  She knows to climb into my lap.

    LE is very tricky , and I hear your angst (been there ) but first and foremost please be careful for yourself. You surely dont want to make anything worse.  You must get a proper eval. and then, take it from there. UNTIL THEN, use caution.

    Please let us know how you are doing.

    Take Care and good luck !

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  • jennifersomewhere
    jennifersomewhere Member Posts: 38
    edited April 2013

    purple32- Thank you so much for your thoughtful and honest answer. It helped a lot. :)

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    YW jennifer.

    I am sure others, better informed than I will pop in as well, but I know how long it can seem when you are waiting for an answer.  The SUSO site will be your best resource, I am sure.

    Dont be surprised if your DR. is not as well informed in this area as in others.  I strongly suggest you get a referral to a LE  physical therapist. It can't hurt, and hopefully, it will relieve your mind.

    Best Wishes to you.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2013

    Jennifer, the rash is a worrySurprised. Lymphedema itself does not create a rash, but cellulitis sure does. That's a serious infection of the skin that can spread VERY rapidly and become systemic. Please check out this page about cellulitis, and get help promptly:http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    As for the very understandable worry about working in the nursery (not to mention hugging grandkids!), good body mechanics can sure help with safe lifting. An OT or PT can help you learn how to manage that. But certainly for now a referral to a well-trained lymphedema therapist would put you on the right track. Any doctor on your team can write one. Here's how to find a qualified therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Please don't wait for Monday to check out that rash, and do keep us posted!
    Gentle hugs,
    Binney

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2013

    I do not have swelling but do have truncal LE and recently had a problem after lifting 30 # boxes at work

    I do work with a trainer who does understand LE and realize that I need to be carely

    suggestion, hug those little folks but try to build up to picking them up till you have been seen a good LE expert and worked up to it

    kiss em instead!  over and over!

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    Jennifer, please do check asap to find out if you have cellulitis, and get treatment if you do. When that's all settled down, there's lots you can learn about building strength safely so you can lift your grandkids.  I'm in the same boat--two grandchildren and darned if I'm going to miss out on picking them up and playing with them in all the fun ways that involve hefting a little one.  There are some documents you can download at the stepup, speakout website, explaining LE precautions for exercise and that includes strength training.  The thread in this forum called 'new resource for exercise with LE' has links.  But first--investigate that rash, because as Binney said, it could very well be an infection, and that's a very high priority challenge you need to deal with immediately, if that's what you have.

    Carol

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited April 2013

    My BS recently diagnosed me with truncal edema. I'm 2yrs post BMX/no reconstruction for bilat BC. My edema isn't very bad but gets sore from time to time. I developed a weird redness bilaterally away from my edema. My BS says it's spider veins & a result of having radiation. Weird that it popped up so long after radiation(over a year!) The "spider vein" areas have been spreading but really slowly. I was told if it bothers me, laser treatments are an option. So, wouldn't laser treatments aggravate lymphedema?

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Cora

    It is possible that the information you were given is not correct.  Unfortunately, most drs. know very little about LE.  You really do need to see a LE therapist and be fully evaluated and have those ' veins' looked at . 

    As for laser, here is much controversy about laser and LE. I think you would need a proper evaluation before you could even begin to consider what path your tx should take .

    Please look up at Binney's post above and do check out the SUSO website  links.  It is  really important that a qualified therapist take a long and hard look at those areas of redness before anything else.

    Good luck to you !

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