ALL THINGS Gloves and sleeves
Comments
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gma, I read the same thing, but find the Allegro combination sleeve/gauntlet fits me just fine, and I am short (5' 3"). Maybe I have freakishly long arms? However, I did not try the sleeve alone, so I have no personal experience with it. But there's no downside to trying the sleeve. If it does not fit, Brightlife will take it back without issue, and even though we have to pay to send it back, it's a tiny, light item so postage is minimal.
You CAN do this gma. I have no comment on wrapping, because I've never done it, as my LE is very mild and sleeve + MLD + exercise and a night garment are my management tools. I know it's a challenge to wrap, and to endure the wrapped feeling, and I think some others will chime in to say how they deal with it. You've been mighty persistent through your whole LE journey, so just keep digging deep to find your strength to continue.
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With all the issues with thumb and wrist swell, just recently, I might give the one piece a try. Thanks for your input. The wrap was on for about four hours before I went to bed and had to take off my sleeve behind it. I wore my isotoners to bed last night with my long sleeve compression shirt. Too hot for jovipak. I did notice the thumb looked nice when taking off the wrap but there must have been a loose spot on the other side of the hand because it just moved the swell to the outside of my hand.. Funny how that happens. Oh well, check in later - got to finish my press releases.
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GmaF, I actually did pretty well when first wrapped, but I think I am obsessively doing everything I can to get back to "normal" - it seems that whenever there is a 5-15% risk of any SE or recurrence in this journey, I get it, and am just in absolute denial that this LE is going to be my life. At least I want to get back to being functional.
Today was not easy, but I managed to paint for 4 hours in class, 2 hours, then lunch, then almost 2 more hours, both sessions with several breaks about every half hour. Arm was feeling pretty heavy and painful, but I started the morning with no swelling in my fingers and some hand swelling, so used a little padding on the back of my hand and used 2 isotoner gloves to get extra compression in the hand, with my new sleeve, and did pretty well overall, fingers were not swollen at all when I got home. Also, when I got home, my Flexitouch had been delivered, so DH and I got that set up and I did my first in-home session with it - much more thorough MLD treatment than I can do for myself!
Wrapped again tonight, happy I was able to function for a few hours today!
Carol, does the Allegro come in grade 2 compression? I have just started to peruse some of the garment sites, there is a lot to take in! Do you need to have an Rx from your doc to purchase these? Or do you just need an order if you want insurance to cover some of it?0 -
Linda, it seems from their website that they make only Class 1 in Allegro. You might call them to ask about that, however. I think that most of the mail order suppliers will give you a detailed receipt, which you can then submit for reimbursement from your insurance.
Has anyone else had a different experience using mail/Internet orders, with their insurance?
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I tried an allegro as well. I didnt care for it, but I passed it on to someoone here on the forum after 1 try so we are all different.
Brightlife is excellent when it comes to returns.
Check with your INS CO first.
Initially, mine said they would not pay for Brightlife ( They normally will pay80% if it is not their preferred vendor) and I wanted my farrow from them. Later, I convinvced a supervsior at the INS CO they were no different than me ordering from one of their DME cataolgue suppliers. She asked for a tax ID , and I called the Brighlife toll free number and got one.When I sent my bill in they said no because it was ordered online, which was not true ( I called)
This last time , I asked Brightlife to type ordered via phone on the invoice and they did. Prior to that I spoke to a supervisor at INS and told them I would be ordering from Brightlife , a DME distributor, by phone, through their ( virtual) catalogue. I got the OK and they now cover Brightlife at 80%.Sometime we have to be creative.
I agree that brightlife is great to work with.
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I have black sleeves/gauntlets. My husband says they're sexy and I do feel a bit like Audrey Hepburn, or very fierce! I also have floral sleeves and tattoo sleeves from Lymphedivas. My LE is under control with sleeves and MLD, so far. It's unlucky to have it in both arms, but it's under control and I'm not in discomfort from it. My LE therapist found it very early.
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I have been struggling with LE for about 5 weeks, last LE therapy appt is today, and I am worse now than when I started. My hand was not swollen until we started with sleeves and bandages and now I cannot get it down at all. I am having almost continuous pain like my arm is sunburned and the glove irritates my hand so badly I can hardly stand it.
I can get the finger swelling down with glove or bandaging, but it gets worse at other times. The glove gives good relief to fingers, does nothing for hand swelling, is very snug at wrist and the wrist swelling is all pushed into the forearm, so I have good fingers, swollen hand, good wrist, swollen forearm. We have tried different approaches for bandaging, sleeve + glove, sleeve + bandaging fingers/hand, adjustable garment with glove, adjustable garment with bandaging fingers/hand, grade 2 compression sleeve with glove (that caused so much pain in my wrist that I could not tolerate after 4 hours), etc. I found that using 2 isotoner gloves on my hand keeps fingers OK and doesn't irritate as much as Juzo glove; neither of them help the hand, and Juzo glove gives more wrist compression.
I have not really kept a diary of what I tried and what worked and what didn't - maybe that is the next step? Have I answered my own questions?
Am so frustrated that each step of this journey has taken my joys away, one by one. First work and music, now art and gardening. Didn't really mind not being able to scoop kitty litter and do household chores, but I even miss being able to do them. Really miss brushing my teeth and using fork in right hand. VERY sick of platitudes from well-meaning people, like "gee, you are lucky, my MIL lost the function of her arm" (what does this look like to you, I am functioning???) and "just be in the moment" (I don't want to BE in THIS moment!!!), etc. Probably these comments belong on the Grrr.... I hate LE thread, but truly, I am looking for any suggestions to help improve my arm and hand so that I CAN get on with finding joy and being functional. My goal has always been to be independent and functional, and right now, I am not. Moods are on the biggest roller coaster since diagnosis, except they are not going back up, only down.
Thanks for any suggestions.0 -
GMA-Thanks for pointing out the Aloe, I did not realize the Diva sleeves had them in them. I am not usually sensitive to things like that- so it will probably work for me. But I did go to their website & see they say one can only machine wash their sleeves. I prefer to hand wash. Although I could do it in a machine..I just dont do wash that often & certainly not a Delicate load...Also I read reviews here about the Diva Sleeves & see many people have problems with them rolling.So then I kind of thought back on the Juzo Sleeve in Black vs the Lymphedivas...Thank you Jeannie on the Black color..I do think I might 'like it'Thanks for the Link Carol.So far I am leaning towards the Allegro Sleeve. Another Cinnamon Juzo & a Black Juzo....Or a LDiva- I do like that it is more light weight...I am going to try to post pictures of the Juzo sleeve I have now...To get your Opinions on if it fits good or not.0
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So here are 3 shots of my Sleeve...It does 'fall down' a bit as I wear it during the day
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Think it needs to move up your arm a bit more. Mine, as I sweat will start to slide down. I use my sticky garden gloves to pull it back up. I can't quite see the wrist part, but mine i wear over the bone, a little lower over the wrist. - Of course, I'm not sure if I'm wearing mine right either so wait for the others to chime in.
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I have heard it is important to wear a gauntlet or glove with a sleeve to prevent swelling in the hand which is more difficult to treat.
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Yes, it is but my LE therapist let me go without when my LE was only in my trunk. When it moved to my upper arms then he said to wear my gauntlets.
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GMA my sleeve covers about 1/2 of my wrist bone. I do have a hard time keeping my sleeve up on my arm. But If I pull it up well- it is a bit too high in the armpit.
My pain & swelling is all in my upper arm-Swelling was new-but back to normal now...So I am hoping I dont need a gauntlet...
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dejaboo, the problem with wearing a sleeve without hand protection is that the sleeve provides gradient compression (more compression at wrist and gradually less moving upward to the top), which is done specifically to nudge the lymph upward. But it also means the sleeve gives us a tight spot at the wrist, which raises the risk --maybe even encourages--fluid to get trapped in the hand. Here's an article about it, by Dr. Andrea Cheville, who is a physician and researcher specializing in LE: http://www.lymphedivas.com/handprotection.asp. So wearing a gauntlet is actually preventative. And totally stinks...I've got mine on as I type this, and geeze does it make me make typing errors!
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I think the sleeve should just cover the wrist bone and no more. Correct me if I am not thinking right. I love the idea of the picture posted as we can help eachother with sleeve fitting. Although our fitters shouldn't send us out the door misfitted, it happens alot.
I have cheated and not put my le gear on yet and I am typing with no glove. What a world of difference. I can't fly on the keyboard with no gloves. Try doing it wrapped. It is an Olymphic event for sure.
Ok...Got to get into my glove/shaper/sleeve right away
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Okay, I am celebrating today. I have been a wrapper since LE struck full barrels in January after back and forth last summer and fall during rads. My arm and hand were just going up and down and all over the place. Finally, after a lot of treatment and PT for shoulder/arm pain left over from MX, it has settled down so I felt comfortable getting fitted for a sleeve.
I tried Lymphedivas and just wasn't for me. Had too much trouble with the wrist break and glove. I've tried a velcro sleeve and some other brand sleeve I can't remember. They were all bad for me. So I just kept wrapping.
Finally, my LE Specialist (and at the suggestion of a few of you wonderful ladies) thought that the Medi 95 combo gauntlet/sleeve one piece would be a good match for me. OHMYGOSH, I got it today. Immediately, I LOVE it. I realize I am only 1 day into it, but everything I had complaints with in the other sleeves isn't happening with this one. Plus it seems more breathable and not so hot. I am thankful I invested the extra money in the silicone top as I have larger arms.
I AM JUST SO HAPPY tonight as it is working, I don't look like a mummy all the time, and I'm not having hot flashes every few second because of the heat! Thanks to those of you who suggested this!
Hallelujah!
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Congrats, Denise-G! Graduating out of wrapping is definitely a step worth celebrating. KS1
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I did not know that there was such a thing such as graduating out of wrapping. I really really hope so, because as hard as i try, it just seems to migrate from one spot to another. when i got my custom juzo, the thumb was twice as long as my own thumb.. it looked like an uncircumcized penis! made my therapist laugh. we sent it back. she thinks they just turned right around and sent it right back to us, cuz after several weeks, it was exactly the same! So, i folded it down to where i wanted it, and she taped them. So now i am waiting again and paid for an otc one to wear in the meantime. on a good note, i went to my boyfriend"s sisters house and she had a vibration machine you stand on. I asked if i could play on it. she said try it with your hands above your head. i did, and i could feel lymph fluid draining! OMG! so i saw my therapist for the last time on monday, and she bandaged for me one last time and on the way home i got on the machine again. Amazing. She is older, and got it for balance, and told me i could come and use it anytime. : 0 !!! My le therapist has been great, but due to my BS and MO, neither thought it "was that bad" till it got worse than bad. My elbow just never really gets better...hhhhhh
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Denise, your story gives me a little hope. I only started the LE journey about 5 weeks ago, and everything we have tried has failed, so I am constantly in bandages. Very very very frustrating as I am a summer-time minimal clothes out in the sun and breeze kind of girl, and am pretty miserable right now. Have been so discouraged to the point I really didn't see any reason for going on, but was told last night by an LE therapist that it IS possible to get to a better baseline than I have right now, but that it takes a LOT of work, and that is what you have done, and I am so glad for you! And thank you is not enough for what you have done for my spirits this morning!
I have an appointment with a fitter next week for possible custom garments. How did you find the right size glove/sleeve combo? Was it by trial & error? Did you order it online? I think the fitter I am going to only deals with Jobst, and other fitters in the area, within 2 hours driving time, use Jobst or Juzo, and only 2 of them file with insurance, but if it is outside of insurance but gives me back some freedom, I will gladly pay out of pocket!!! Just need a little more info on it, how to measure for it, where to get it. Again, thanks!!!!0 -
Denise, yee-ha!
Go easy with it the first couple of days so your system can get used to it gradually. College grads throw their hats in the air--we should have a bandage-throwing ceremony!Linda, yes! You really will get to a better place. Hang in there! Here's information on fitting and what to look for in a fitter:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htmKeep us posted, please!
Gentle hugs,
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Thanks, ladies, for the congrats! Much appreciated!
Kathec and Linda - here is some more hope - don't give up! Honestly, I thought I would have to wrap the rest of my life my arm was so big. My major flare up happened 1 year post MX after chemo, and 5 months after rads in January, 2013. I lifted 3 bags of heavy plastic grocery bags with my "bad arm" and poof - within 1 day it wasn't good. So big it scared me.
Called LE Therapist and got on it but had much swelling in hand and fingers too. Fingers were sometimes twice their size. Hated that. So I kept wrapping and wrapping, going to LE Therapist and lots of manual massage. Then I used ALOT of kinesio tape on my hands and fingers, and on elbox as elbox would get very weird. Kinesio tape was like a miracle. Really got the fluid it over the course of many months coming and going. It then started moving out of my hand to the extent I can see nice clean knuckles now.
At that point wrapping almost 24/7 with a little rest. As it improved, I left it unwrapped at night and wrapped again in morning.
Then I started a PT cancer rehab program. The arm strengthening exercises and shoulder exercises really started getting the lymph fluid flowing better to the extent I decided time to retry the sleeve. I fit the measurements of a pre-measured sleeve so didn't need custom. I will keep you posted. Day 2 and looks and feels good! DON'T give up! I NEVER thought this would improve again as much as it has. Keep working on it!
Kathec - tooo WEIRD about vibration machine!!! What is the thing? Did you ask your LE therapist about it? Can it hurt anything - anyone??? I want me one - LOL!
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That is great news Denise! I agree with Binney- A Bandage Toss is Needed! WhooHoo!
The machine Linda tried - I forget what it is called- I do think it was discussed briefly about a year or so ago...If I recall nothing really was concluded about it for LE
Linda- I hope your appt next week goes really good & that you find some relief very soon!
Carol- Thanks for that link. So I sounds like it is still ok to wear just a sleeve when I really am not doing much with my arm....Is what I got out of the article. I hate my Juzo Gauntlet. It is terrible on my thumb.
Maybe I would be best to try out the Allegro All in one & see how that works for me...Then go from there with a 2nd order....great with the free shipping.
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dejaboo, I think Dr. Cheville's point is that it's ok to experiment when you know your arm and hand, but be watchful and use hand protection if you see any sign of trouble. She is pretty clear that women wearing compression to help prevent LE need to wear both, but that if you have LE, she understands that people want to experiment. On the thumb of your Juzo gauntlet, one strategy is to put a battery in the thumb as it dries (or something of similar shape) to make it just a tiny bit bigger. It might be more comfortable. Some of my Juzo gauntlets make my thumb go numb and I have to do that. Others are fine, and they're all the same size, so I guess manufacturing is not 100% consistent.
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Ok, Thank you Carol!
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To Linda-n3 and other folks who feel like they are going to be bandaging forever, take heart. I wrapped 24/7 for 8 months last year, and my LE therapists were at something of a loss as to what to do. Slowly, I made the transition to wearing day garments. I started wearing them just a couple of hours a day, slowly increasing the amount of time. I am now able to wear day garments for 10 or more hours most days. I do swell over the course of the day while wearing day garments, and by the end of the day, I can't wait to get out of the day garments. By wrapping at night (at least 10 hours), I reduce back down to the point that my day garments fit. KS1
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Deja, I put fat felt markers into the fingers of my wet gloves and let them dry. What a difference. It stretches out the fingers just perfect for me.
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I'm doing the LE happy dance!
I've been a Juzo customer for years and I love their products, but as some of you may recall, I have been playing custom garment ping-pong with Juzo since early March 2013. The custom glove I received in late March/early April was grossly wrong in wrist length (6 cm instead of 3 cm) and the middle finger was too tight at the base and so loose at the tip that it didn't touch my skin (iMy hunch is Juzo inverted the middle finger base and finger tip circumference measurements.) Because of various bureaucratic snafus at Juzo & my DME company, the remade glove didn't arrive until June 4th, and when it did it was clear that Juzo had fixed the length problem, but not the middle finger problem.
I spent an entire day on the phone with various people at my DME supplier and at Juzo last week. As suggested by someone on the board, I played the "I'm an active member of the LE community" and the MD cards. I don't whether it was this, the photo documentation or sheet persistence, but I just received the glove and it FITS!!!!! I am so happy that you would think I had won the lottery. Kudos (and an enormous plate of warm brownies) to the reps at Juzo and my DME company who helped me! KS1
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so good to get your correct garment! You really worked hard and deserve
yeap, brownies are a great gift to the reps!
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KS, A picture is worth a thousand words. Brownies for all and a happy dance to....which means you can report that type of exercise in the kick butt thread
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I got my sleeve/gauntlet Allegro combo yesterday. Came very fast, I ordered it Friday!
I am really busy getting ready for my garage sale this week...But hope to post a picture of it on- before I wear it & decide if it is right.
It is definitely longer then my Juzo sleeve...I dont know if it is too long though. it is also tighter on the forearm & wrist (where I have no swelling) It sure is harder to get a combo sleeve on!
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