New glove & sleeve question - swelling

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mcgis
mcgis Member Posts: 291
edited June 2014 in Lymphedema
New glove & sleeve question - swelling
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  • mcgis
    mcgis Member Posts: 291
    edited December 2013

    Hi. I got my new glove and sleeve today. I was measured by a certified lymph therapist. I wore them for 5 hours. Just took them off and my hand was really swollen. My fingers are OK and I don't notice a change in my arm. Is is normal for your hand to swell as your body is getting used to having these compression garments on? I wasn't expecting the swelling. I was at least expecting it to stay the same or go down. I left a message for my therapist but being the weekend I'm hoping to hear something from you guys.  Thanks.

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  • mcgis
    mcgis Member Posts: 291
    edited December 2013

    bump 

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

    mcgis, whenever I get new garments I wear them only for an hour the first day, and if that goes well gradually increase it over a couple of days. Our bodies do take some time to get used to compression, and sometimes adjust well if we do it gradually.

    But of course it's also possible the fit just isn't right. If you try it for an hour at a time a couple more times and it works well, try increasing the time a bit. But if even an hour causes swelling just leave it off until you see the therapist. If that happens see if you can get the new swelling out of your hand with some self-MLD and elevation, deep-breathing and staying well-hydrated.

    Hope it goes well--let us know, please!
    Binney

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

    I sure agree with Binney on the gradual approach, and if you're getting swelling, there's a problem.  I hope you hear from your therapist soon.  I hate the trial-and-error that characterizes LE treatment!

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  • Kicks
    Kicks Member Posts: 4,131
    edited December 2013

    You may have the wrong level of compression for your garments.  For me, high compression will make my LE MUCH worse - at least on my hand.  

    My CLET guy ordered my first garments in heavy compression.  I went up to pick them up when came in.  He wanted me to hang out there for 30 - 45 mins. before I left  to go to my Rads.  It seemed OK when I left there but by the time I got to Rads my hand had almost doubled in size In 35 - 40 min.  Tried calling him from the parking lot but he was with someone so I went straight to Dr P's RN.  She told me to take it off and while I was doing Rads she'd ttry to get him.  She did and I was told to wrap and get up to see him the next morning.  He ordered me a low compression set and that's what I've worn sincewwitty no issues.

    I always wash new garments twice before I wear them.  Once washed, I just go ahead and put them on and wear as usual.   I get 2 or 3 new sets every 6 mths so they never loose their elasticity/compression.

    We are all different so what works for one does not always work for someone else.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    all the advice is good

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  • mcgis
    mcgis Member Posts: 291
    edited January 2014

    Thanks. Do you all wear them from wake up time to bed time? Do you ever give yourself a 'break'. Of course if you are going to be doing something strenuous you'd keep it on but if you're just hanging out at home on the couch... do you take it off? 

    I suppose you need to take it off to do manual drainage if you want. But then it replaces having to do that now. I'm thinking I'll do it in the morning before I put them on and at night before bed. 

    What is your routine??

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    I am not one who ties herself to an exact schedule with anything but basically in the morning when I get dressed night sleeve comes off and day garments go on and visa versa at night.  I use my Flexi Touch daily but the time I use it varies with what's going on when.  My glove is on and off a lot during the day depending on what I'm doing (have very little problems with hand LE) and I HATE to put on a 'rubber glove'' over to keep it dry/clean.  I do sometimes go 'nakid' (sans sleeve/glove) for some special occasions but not too often.  I keep an older set of garments in each of our vehicles as a just in case something happens and I have to do something that might result in my newer garments getting stained/oily.  I have an old set in my tack box in case I have to 'doctor' horses and an old glove in my tackle boxes so when we go fishing I can put it on so newer ones don't get fish slime on it when releasing fish. (And I can put the clean one back on when done.)   Just how I handle 'it' with my lifestyle which probably is different than yours.

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  • mnmbeck
    mnmbeck Member Posts: 313
    edited January 2014

    How many sleeves/gloves do you all have?  I just got my first one.  I was told that most insurances only cover 1 every 6 months, and the cost is about 130-150 for a new set.  It's such a pain to try to wear it all day, and then at the end of the day when I want to go to bed, I wash it and I have to WAIT until it's done washing to hang it up so it's ready for the next day.  I feel like I am a prisoner to my washing machine....no going anywhere overnight because of this stupid sleeve!  I haven't even had it 2 weeks and I'm already frustrated by taking care of it!

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

    mnmbeck, we all feel your frustration! My insurance pays for two sets at one time, two times per year, which helps with the laundry need.  Unfortunately, insurance coverage for LE garments is all over the place, and Medicate coverage is nonexistent.  I don't need to wear my garments all the time, because my LE is mild and wearing the night garment (a Tribute) seems to keep things in reasonable shape for the day. I do wear my sleeve and gauntlet for air travel and for heavy activity like exercising, raking leaves, kayaking, and kneading a lot of bread dough. The intermittent wear means I don't wear out the garments as often as I would with daily wear.  So I am able to keep using older garments for a long time, and now I have a good supply--six sets, I think. That really streamlines the laundry issue, because I can let them linger with the rest of my laundry and wash when it's convenient.

    If you order online, you should be able to get a sleeve and a gauntlet for about $80 before tax and shipping. Here's a popular place to buy, because they have a very patient-friendly return policy (wear it for several weeks and if you don't like it for any reason at all, they'll take it back: http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS.asp  This company sells a brand called Allegro, and you can get an Allegro sleeve + gauntlet for about $40, or a combination (one piece) sleeve/gauntlet for about $30.  Some women find that the Allegro sleeves are way too long, but you can always try it and return if it doesn't work for you.  The Allegro fabric is not as soft as some of the pricier brands, but it might be a way to get at least one other set so you can be free of the nightly laundry tyranny.

    Another tactic is to look at Lymphedivas' factory seconds, which have design printing flaws but are otherwise top quality: http://www.lymphedivas.com/store/pc/viewcontent.asp?idpage=2 You might have trouble matching a sleeve and gauntlet in the same pattern, but it's worth a look--they sell these at half their normal retail price.

    If you buy online, you'll want to find out from your insurance company if you can submit receipts for reimbursement.  Be sure that you have accurate measures, which are hard to take on yourself. One strategy is to simply replace your exact items (perhaps hold onto the boxes each purchase, to make sure you have no confusion when buying on your own). My LE therapist does not fit garments, but I have in the past asked her to measure me for online garments, after printing out the online sizing charts. 

    Good luck crafting a strategy to reclaim your life from your sleeve laundry!

    Carol

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    mnmbeck - In the 4  yrs (later this month), I've been dealing with LE, I've had probably at least 20 sets - not counting the ones that had to be sent back..  Rather or not I get 2 or 3 sets depends on how well the last are still holding up as during summer I'm much harder on them than winter - usually winds up getting 2 one 6 mnth and 3 the next 6 mnth..   Each time I get new ones, the previous ones go in the 'using drawer' with the new ones so I have the newest ones for daily and next newest for backup if I get busy and don't get the newest washed and dried.in time  (I sometimes machine wash and sometimes hand wash depending on how dirty/sweaty they have gotten and if I'm home or somewhere else and machine dry if at home on 'fluff'/no heat with a clean dry bath towel as I like the feel of them fluff dried better than hang dry.).  The old backups go in places for use where they might get ruined/stained doing whatever needs to be done or put away to replace ones ruined or eventually thrown away when no longer are at all suitable for use.  As I always get the same color, I mark the tags in them with the date so can't get confused as to which is oldest.  I was told that with daily wear a single garment should be replaced every 2 mnths to no more than 3 months - thus 2 or 3 garments every 6 mnths.

    Online, Off The Shelf or 'Seconds' are not an option for me.  My garments have to be custom - my arm measurements and the compression level I need do not match what is available Off The Shelf and my  hands/fingers are somewhat webbed so OTS gloves definately cause problems.  My CLET guy is the one who measures and orders my garments and it took several new sets before finally got the weird hand measurements totally figured out  but finally did.

    Can't help you with what insurances cover or don't cover or costs.  I get my care through VA so what I need is ordered when needed.

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

    kicks, writing dates on the tags is simply brilliant!

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    You do have to some times re darken as will wash out eventually.

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  • mcgis
    mcgis Member Posts: 291
    edited January 2014

    got my air compression machine so i use it at night for 1/2 hour. my CLT said i can use it up to an hour/day (at once or split it up). i find 1/2 is best for me at night. i wear my glove and sleeve all day (except when using the machine and doing manual drainage). we're putting in an order through my insurance for 2 new custom fit gloves. hope that helps with my hand. my fingers are looking better with the glove i have now but my hand is still a bit swollen. when i take the glove off just to give my hand a breather for a few minutes during the day my hand feels and looks better once it's been off. i have an Aunt who started with a glove and sleeve, and a night glove (looks like an oven mitt) and is now down to just having to wear a sleeve. has anyone else's LE changed that you no longer wear both glove and sleeve? i tried a gauntlet with a sleeve but that didn't work.  all this 'trying this' and 'trying that' is a pain. can't wait to get it figured out so every 6 months i get remeasured and hopefully we just have to send in the order and be done with it. 

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  • mcgis
    mcgis Member Posts: 291
    edited January 2014

    bump

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