ALL THINGS Gloves and sleeves
Comments
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If it was sliding down your arm, it doesn't sound like it fits quite right. If you haven't worn one before you maybe just having sensitivity issues to the compression. Good luck and hope somebody else gives you some help.
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Gosh, no, that certainly does not sound normal to me! I'm no expert - just a fellow Lymphedema sufferer, but I've never experienced that -- something is wrong!!
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SusanSnowFlake I agree with others. Go back to you fitter and be sure it fits properly. While it can take a bit to get used to compression garments you shouldn't be in pain. Pain is never good.
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Susan.....My first experience with a sleeve was Juzzo.....after having it on for about three hours my arm blew up.....I was on my way to our summer place........when I did get there I took it right off....my arm was looking like someone scratched it.....and it was blotchy......when I came back home I went to the PT and they said it looked like I would have to wrap.....at that point I just said the hell with all of this......four year later I had a Thrombosis in my hand......then I went to another PT at a hospital in Jersey.........she fitted me with Solaris Exo Strong and night compression.....so far it is a challenge but a much better experience....I have to go back to the hospital in May....Liz0 -
Susan, I also have pain with the custom Juzo. Now it is getting better, and the pain has translated into severe itching. I simply don't understand this, my arm is worse than before the LE treatment and everyone ignores why I itch so extremely. I also itched under the wrappings also. The doctor suggested with my mastectomy, maybe some nerves got rewired wrong?It is frustrating. I also have a very sore place where the silicon band goes that gets horribly itchy, where if I scratch it, it is pain, not itch. The wrapping again had the same effect, so it isn't materials. My LE is mild and I am starting to think less skin irritation would be better for me than the sleeve. I am frustrated.
(And I did use prescription strength cortisone, lotions with no chemicals as well as no lotions, the severe itching always happened.)
Denise (not wearing a sleeve today for a break)
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I wonder what would happen if you tried Bodyglide anti friction rub on stick. If I don't use this on my inner elbows I start to itch. It is so dang hard to be compliant when we get stumped like this. BAH!
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This was my 3rd sleeve. 2 manufactured longs and then this custom that is 2 inches longer than the long. The fitter is very nice, I talked to her today she said I need to see my PT to get help learning how to wrap because it may be all I can do. BUT, during the conversation I found out that the cancer center only deals with 2 LE supply makers. That's frustrating, there are people on these boards saying that they have had good luck with a variety of makers.
I haven't really started to swell yet I have truncal LE that is more than likely moving to my arm. I see a difference in one finger now and then. My arm is still slightly sore and my thumb is a little tingly, I'm afraid wearing that sleeve for 2 hours has hastened something that could have taken months or even never occurred. I've been waiting for my LE PT to call, but it's looking like Monday now.
LE is constant frustration, shopping, frustration.
@crystalphm, in one of these threads, and it could be further back on this one, someone mentioned a manufacturer that made a lined sleeve to help with skin irritation. You might want to look back on this one because the person said it worked.
As soon as I think I've gotten to a point where I know what I'm doing about LE something else happens and poof, I'm starting all over again.
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Susan your custom should never slid down. Mine did when I would walk and so I used a special glue to hold it up. This 2nd new sleeve does stay up if I don it properly.
So I just walked a half hour and I put the BODYGLIDE antifriction on my web thumb and it does help the rubbing but doesn't solve the tight binding web problem but that would be something my fitter needs to figure out. I will definately be using the bodyglide on my web again.
I think we should make a thread called ill fitting garments and solutions. I bet we would get a lot of response there.
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My custom sleeves do slide down w/movement or exercise. Hmmmm. PT just told to hike it back up.
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Minus two. I just hate that when fitters tell us to hike it up, adjust, etc.
So when their underwear fall around their knees should I tell them to HIKE IT UP! Yeah right!
Someone mentioned a liner for their sleeve. I tried one for the inside elbow. It was wonderful sliky but it still didnt' work for me. After wearing sleeves for 5 years I still have to use a antifriction stick rubbed on daily. Its the only thing that works for me.
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Just made a new thread about our bad garments. I think we should name the manufactures of our garmnets and then I will call them to read the posts. They really should know how their products are performing. They are suppose to train and help their fitters problems but I bet they never hear from half of them. Most people just give up and hang up their sleeves for good.
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Insurance won't pay for sleeve and gauntlet until I actually get Lymphedema.
This needs to change ! When will ins co. realize they save more $ through prevention. This should be on the grrrr thread! Just got a Circ Aid Juxta lite for husbands leg and foot. Trying it out today.
As for the advice, Iago is right on. Good luck and kudos to you for taking prevention so seriously. Hopefully, the payoff will be your reward !
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mom got fitted for sleeve today for prevention they said would get her medi harmony is this a good brand???
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When it comes to a Sleeve and Gauntlet or Glove...it is really personal.....what works for one may not for another.....Liz
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I wear the Medi 95 but it had been discontinued. The Medi Harmony is the replacement. I wish I could wear the Medi Harmony but the new sizes don't fit me. My arm is too small. Overall I would say this is an excellent product.
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Does anyone know how much a custom glove cost? I was using the gauntlet first then now the medi harmony glove but still making my hand swell since its too big for my hand. Now dr is recommending a custom one.
Also, anyone here that are flyers? What are your experiences when flying?
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My next set will have to be custom made, too. Insurance should pay for some of it.
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Izzyfran my LE MD said rarely does anyone fit in a off the shelf glove. I don't need the glove anymore (except when I fly). I was lucky that the Medi 95 glove fit well except the fingers were a little short. I still wear it when I fly. Maybe the Medi 95 gloves are still available. I know I can't wear harmony arm sleeves because they are bigger than the Medi 95.
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Question about sleeves. My LE is only on the chest/armpit and sometimes a little onto the back, but not the arm (not yet anyway). But the LE therapist got me a sleeve and gauntlet to have on hand, just in case. I'm supposed to wear them if I should need to fly, or do any work that is considerably more than normal everyday stuff. My question is, are they supposed to be replaced periodically even if they haven't been used? Do they lose their stretchiness, or whatever, over time whether in use or sitting in the drawer? .
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Jennie, they'll last much longer if you wear them only rarely. Weight loss or gain, though, will alter the fit too, so just be aware of how they fit and feel each time you wear them.
lago, did you mean rarely does anyone fit in a non-custom glove?
Be well,
Binney0 -
My LE is truncal so I wear a compression bra 24/7. I wear sleeves for exercise & other heavy duty or repetitive work. And I have gauntlets for when I fly. I aggravated my LE by doing water aerobics last year. I thought the water pressure would protect me but didn't use my head & think about upper trunk & arms that were out of water for the exercises. Duh/Sigh. Anyway, my PT thinks I'll need to wear sleeves in the pool this summer for water aerobics.
Anyone have any idea how long sleeves will last in the heavy chlorine 3x a week? Even with thorough rinsing I know bathing suits won't last a whole season.
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After just 1 Yoga class doing the wrong poses, my LE flared up. I could tell because first my forearm and wrist felt achy, then the next morning, I saw some slight swelling. I'm sooo disappointed. I'll have to see if I can get in to see my therapist or ask her what to do. Do I need to go back to wrapping? This is my first flare up. I wore my sleeve during class and in fact, I wear it most every day, but it didn't help. I was all set to try a pool class instead until I read your post, MinusTwo. I'm really scared now to try that, too. This is really bumming me out. LE really sucks!
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bc101 - Sorry about your flare up. I was going to try Yoga next. Hope somebody will chime in with pool expertise.
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lago - I can only say that my custom gloves are the only way I could wear gloves. I do not fit into any OTS (Off The Shelf) gloves (or sleeves either). My hand is somewhat 'webbed' so it takes a custom to fit me. The first I got was not ideal and it did take several different sets with changing 'measurements' to get them correct. Now it just takes my LET Guy to send in the order and I get the new ones and they fit good. About a week ago I got my new 2 sets in and they fit as should as did the 2 sets 6 mths ago.
Jennie93 - I can't say about sleeves/gloves left in a drawer as to how long they last as I wear mine daily. I get 2 new sets every 6 mths as according to my LET Guy if only 1 set is used it looses continuity in 3 mths and needs to be replaced then. So he orders me 2 new sets every 6 mths.
I was told to never use my sleeves/gloves in water/while they are wet as the compression is compromised when wet.
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I had to go to a custom one piece sleeve with glove, because even with the custom, correctly fitted separate sleeve and glove it made my hand swell more. The one piece works great, but they cost about $700+ ea, and I'm on Medicare now, so they aren't covered. I did stock up while I had private insurance, but I'm going to need some new ones soon. Any good ideas?
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My LE therapist said swimming, gently, is one of the best ways to exercise if you have LE, the water acts like compression. You should start out slow and easy. She also said you can wear an old, stretched out sleeve when swimming if you get any swelling. Just be cautious if you are exercising in warm water pools, if the water is too warm it can cause more swelling, and from experience, this is true, the water should be below body temp.
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bc101: I do yoga too. Can you ask the teacher how to modify the poses so that your arm is not so affected? I do things like, if they are spending too much time in dogward dog,, I'll go into child's pose and take the weight off my arm. I wear my sleeve to class too. You may be able to do the poses,, just not hold them as long as everyone else.0 -
I have trouble with any exercise, even walking - but I find elevating and sleeves help - You just have to find your boundaries. And stop before swell starts. I can only do things for 5 or 10 minutes at a time then put my arms up and pump my hands - wait a while before doing anymore. Make sure you drink lots of water.
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Sorry I mean rarely does anyone fit in an off the shelf glove.
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http://stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf
You can give this document to your yoga teacher; it has suggestions for modifying poses to make them LE friendly, and more important, it explains why--so the teacher can keep an informed eye on you as you learn and practice yoga
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