Weird Thing Happened on my way to a Wedding

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AmyQ
AmyQ Member Posts: 2,182
edited November 2015 in Lymphedema

I am a wedding planner so yesterday was my first wedding this fall. It was a very long and arduous day but I got through it and home after 17 hours. This morning I woke up to find my right hand (the lymphedema hand) ballooned up just like sterile gloves when they're blown into. It hasn't been painful and I don't see any other signs or symptoms of a problem but I can't seem to massage the fluid out of my hand.  The skin is stretched very tightly across the back of my hand and my fingers have restricted movement.  I cannot figure this out.  I have never been prescribed a gauntlet so don't have one, only an arm sleeve.  My right arm is more swollen than normal but the sleeve seemed to take care of that.  Anyway, just curious what you recommend.  And I'm really curious why this happened today.  Wedding days are physically difficult as I am on my feet practically the entire day, hauling and moving things constantly. If anyone has any thoughts or suggestions, I would love to hear them.

Thanks

Amy

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Comments

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

    oh my goodness,,, probably all the hauling and moving set things off.  I hope the more experienced people chime in here, but I'm concerned about you wearing the sleeve w/o the gauntlet.  Would the sleeve trap the lymph in the hand if there is no gauntlet?

    I am thinking in the future, you will need to wear both the gauntlet and sleeve when you are working.  Drink lots of water and stay hydrated. But right now, you need to move the lymph out of your hand,,, do you have an LE therapist that you can call tomorrow?  Maybe put hand up in air and do fist pumps?

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  • kareenie
    kareenie Member Posts: 339
    edited October 2014

    Actually if you have hand swelling you need a glove rather than a gauntlet. I would call your therapist. You may need to be wrapped. Hand swelling is a bear!

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

    Amy, do NOT wear the sleeve again until you get the hand under control! If you were wearing your sleeve without any hand protection, that would be the reason your hand swelled. When you did all that lifting and moving the lymphedema flared, but if you had the sleeve on, that would trap the fluid in your hand. If your therapist is the one who issued you a sleeve without giving you any hand protection, it might be time to look around for another therapist. Here's how to find a well-trainied one near you:

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

    Until you can get help from a therapist, try these:

    Elevate your arm (above your heart, but supported) as much as possible through the day. 

    Stay really well hydrated. 

    With your arm elevated, open and close your hand gently and slowly, then raise your arm and pump your fist and elbow gently and slowly; do it every half hour or so throughout the day. 

    Use a pillow to elevate your hand at night.

    In the meantime, you might find an Imak or Isotoner glove from the drugstore would help to support the swollen tissue and relieve some of the tension and discomfort.

    Please keep us posted!

    Gentle hugs,
    Binney

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2014

    Hi Ladies, 

    Thank you for your replies - it makes sense all the lifting and carrying I did Saturday would have caused the swelling, plus I did not stay hydrated as I was on the run and water wasn't readily available.  I did not wear my sleeve at all on Saturday, so when I woke up Sunday my hand was full and puffy.  I did some light manual massage on my hand but then put my sleeve on my arm as it was sore.  My arm felt better but my hand stayed the same.  I clearly understand your point about wearing a sleeve without a glove.  I don't even have a glove or a gauntlet as they were never suggested but I guess it's time to re-evaluate.  My hand is somewhat better today but there is a very full puffy area across the thumb and lower back of my hand with a very deep indent.  Not sure what that's from.  

    I have been elevating and trying to catch up on hydration.  I will look for an Isotoner glove this afternoon and I'll make an appointment to see my LE therapist.  My next wedding is Thanksgiving weekend so I will be better prepared and will wear my sleeve and glove as a precaution.  You all are the best!  It's so comforting to reach out and find genuine concern and support.  You're the best!

    Amy

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2014

    Amy, Dr. Andrea Cheville of Mayo Clinic is a well known lymphedema specialist, and here's an article she wrote that's on the Lymphedivas website, all about why hand protection is needed when wearing a sleeve: http://www.lymphedivas.com/en/hand-protection

    ...in case your LE therapist needs convincing.  

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2014

    Man, I screwed up big time tonight.  I tried to find an Isotoner glove until I can get in to see my LE specialist.  I came home empty handed (ha- no pun) so I asked my husband to wrap my hand and wrist to try to compress some of the fluid out and back up my arm.  Well after just 10 minutes my fingers ballooned up and were almost impossible to bend so clearly my amateur efforts were counterproductive.  I now have the wrap off and have been elevating my hand above my head and doing mild massage.  I am trying to stay hydrated but clearly I screwed up.  Thanks Carol for the link to lymphadevias. I'll read it next.

    Amy

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2014

    Kira posted hand wrapping drawings a few times , a while back. You might PM her to repost, and hope she has email notification of PMs. 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2014

    carol asked me to post my hand wrapping guide: I got it from my LE therapist, it uses a finger bandage folded in half and 2 rolls

    image

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

    And it assumes you actually have the right wrapping material. 

    Amy, insist that your therapist teach you this skill--it's absolutely essential to taking back control of your life.

    Hugs,
    Binney

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  • kareenie
    kareenie Member Posts: 339
    edited October 2014

    do not use ace bandages to weap hand or arm. You have to have the right elastic gauze or finger wraps to do the above finger wrapping.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2014

    Thank you ALL so much!  I couldn't get through this without your support and guidance.  Thank you thank you.

    Amy

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2014

    Knowledge of bandaging is an essential skill to have in your "tool box", but it is essential that you are taught properly, as you can trap fluid and damage delicate tissue.

    Here is a page from Lymphedema products on finger wrap supplies: and you don't wrap the fingers tightly, just lay it on flat, and snug, but not tight, and add layers if you need more compression. You do NOT want to chafe or trap fluid.

    http://www.lymphedemaproducts.com/products/fingerandtoewraps.html

    There is a video from the Northwest LE Center that shows kind of a chaotic self bandaging:

    https://www.youtube.com/watch?v=OWq1kP4fvtY

    The ideal is for a therapist to teach you, and the key is that a bandage should actually be comfortable--studies have shown that lower pressure bandages work better than high pressure: you want to reduce the arm, not traumatize it or hurt it.

    Some therapists are lousy at bandaging--they often learn a 3 bandage technique without foam underlay that isn't ideal--I learned this at my CLT training, and I showed them a better way to bandage--with gray foam underneath and using more bandages to create more pressure, not pulling tighter. 

    So, if it hurts, that's not good, and if the arm doesn't come out feeling and looking better, you need to adjust--add more foam and possibly another layer.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Quick update...met with my LE specialist who first measured my arm and compared to the opposite arm as well as measurements from my last LE treatment over 15 months ago.  My right arm is 40% larger!!! Oh my gosh...no wonder it hurts.  She has scheduled daily therapy for two weeks to try to get this fluid moved out.  She's going to wrap my arm as soon as she sees improvement then teach me how to do it.  She doesn't want any compression on it until the swelling goes down.

    She thinks I over worked or overused my arm the day of the wedding or another possibility a scratch from my cat could cause this without showing an infection.  My arm and hand look just awful and is painful. So this evening I'm doing computer work and my cat decides to use my right arm, yes the LE arm, as a springboard while getting away from our dog.  He leaves 3 deep claw marks that draw blood in the fleshiest firmest part of my sore arm.  I wanted to scream or cry! I am so angry with that cat right now, seriously I had a few choice expletives.

    I am looking forward to my visit with my LE specialist tomorrow and all the days to follow to get this mess under control. It really worries me to pieces thinking about cellulitis or other complications.  

    Amy

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


    oh my goodness, Amy,,, clean the wounds and put on some antibiotic oint!!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Glennie, thank you...I did just that.  

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    Thankfully my arm didn't react badly to the claw marks from last night. Today I had 75 glorious minutes of massage and then, much to my surprise, my LE therapist wrapped my arm.  What an ordeal that is having never had this done before.  For those who have not, it's almost like having a full arm soft cast. The therapist started by putting on an organic lotion, then wrapped my arm with rolls of cotton like fabric, then she started with my fingers and individually wrapped them up to the first joint. From there that may have done another layer of cotton, if I recall correctly, then two layers of an ace bandage wrapped lightly.  She fashioned a joint in my elbow area so I have flexibility of my arm so I can use it. I am to keep it this way and sleep with it. I see her again tomorrow at which time, she's unwrap, massage and rewrap.  This will go on for two weeks.  Wow. I am so impressed with her technique. She claims she will teach me to do this but it looked tricky so I'm not sure...I am hoping she can get my arm back to "normal" before I fly in 11 days.  I can't imagine what TSA will say or do when they see my arm.

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  • carol57
    carol57 Member Posts: 3,567
    edited November 2014

    Amy, it's great that you're getting the treatment you need.  Yay!  Wrapping does the best job of reducing swelling, so you should expect some pretty good results.  

    Just to clarify, the bandage she used is not an Ace bandage--it's something called 'short stretch' that works differently from Ace bandages.  The reason for bothering to point this out is because as we know, LE is a do-it-yourself-discovery condition, and lots of people (me too, at first!!) meander around here and other Internet resources looking for information, because patient education about LE is pretty inadequate, at best. We don't want to give the impression to anyone new that it's ok to wrap an Ace bandage around a swollen limb, because the Ace puts constant pressure, and it's hard to control the amount of pressure when applying it.  LE bandages add compression with layers instead of by stretching, so it's easier to be nuanced in the pressure being applied. LE bandages apply more compression against a working muscle, and they release some compression when the arm is at rest.  An Ace bandage just plain squeezes, constantly.

    At least that's my understanding of the differences.  So much to learn about this crazy condition!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2014

    hi Carol, 

    You're right, this is not an ace bandage. Thanks for pointing this important information out. I am excited to see how my arm responds to wrapping. Thank you for your support and information.

    Amy

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  • carol57
    carol57 Member Posts: 3,567
    edited November 2015

    bum

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