My Sleeve questions

Hi Sierra, not sure if all juzo's have the silicon dots at the top, so I'll ask, does yours? Some people get itchy with these, and I've had that a couple of times, but thankfully mine have settled down. Is it too tight? Mine leave little indentations when I take it off, but it's only slight. On the times it's itched, I've noticed the dents are deeper. Probably that was caused by my arm being a little more swollen than usual, I don't know. If I get itchy, I have a particular cream I put on, it's called alpha keri, and I think its only in nz and Oz, but might be wrong about that. In any case there'll be lots of similar anti itch creams the US can get.

Hello December!

Yes it is common, as there's no real cure for LE and we are at risk to develop it for the rest of our lives. That said, some people do manage wear their sleeves less over time, particularly if their LE is early. It's generally recommended that you should always wear a glove or gauntlet with your sleeve as the fluid can pool in the hand much more easily if you don't and hands are much harder to deal with. You can get "all in ones". What is important is that you are seen by a qualified LEist. It may be you will be just fine with an off the shelf, but it may be you need a custom made. An ill fitting garment can make the condition much worse. I'm in NZ so I'm not familiar with the US system and how it works. I don't have a link right now, but a site is often mentioned here called stepupspeakout which has lots of great info.

"Be still and know that I am God" I love that. :-)

Sierra, really sorry you are having to put up with this! I know it's hard, but try not to scratch. We are at risk of infection ie cellulitis. We DONT want you getting THAT! I think a lot of us carry around some form of antibiotic cream to be used for things like scrapes nicks hangnails etc. If you have that, and it's really annoying you I would put that on as an interim thing, but if you are allergic to those dots, there are other options. It sounds like it's getting worse, so on second thoughts I wouldn't wear it for now and see how your arm settles down.. If you've got 30 days to return, then don't let them push you around. You may just have to get a sleeve without the dots. My skin is extremely sensitive but thankfully Ive found my arm settles down. Yours might too. If you put the cream on first, just let it sink in first for a bit. Let us know how you go.

We are each unique and what works for one of us individually will not for others. What works for me definitely does not for others..

I have to have custom sleeves and gloves as I can not wear OTS (Off The Shelf) as I do not fit their idea of sizes and my hand is somewhat 'webbed' so 'standard' gloves cut into the webbing making nasty sores and HURTING BAD. So it has to be custom for me.

My day garments are Juzo. It did take a few times of my LET guy (he has his Masters in OT) 'tweeking' hand measurement to totally get glooves right for the webbing but did several years ago.

My day sleeve has the silicon band on it and I like it. I did have a sleeve early on without the band and it was very bad about rolling over/down which wasn't good so it is added to my sleeves. Yes it does leave little dots for a short time but that's better (to me) than a 'band' rolling down and leaving a 'ring' around my arm.

Besides size/measurements/fit remember that garments come in different levels of compression. The wrong compression level - too low or too high - can cause a lot more issues. For me, I have to have alow compression glove for hand or it will puff up to several times normal size quickly with higher compression. With low compression glove, hand stays nicely down.

I am in a bit different situation and than most as my excellent care is through the local VA so my LET guy is responsible for ordering my garments and being sure that they are what works for me. He orders - I get them. I get 2 new sets (sleeves and gloves) every 6 months as, according to him, a set (if you have only 1) it should be replaced every 3 months so he orders 2 sets every 2 mths. I must say that I can tell a difference and they no longer are 'right'.

I have more issues during winter when it is brutally cold as I can't get out and do as much as I do when it's warm so we are trying a new idea for this winter. Sleeves are going to be medium compression as elbow is the worst area but keep low compression for glove. So far seems to be working good.

I am a very active 'outdoor' woman getting all sorts of cuts/scrapes/punctures/etc. in far from 'clean' situations and have not had any infections. I do not use antibiotic creams or take antibiotics but do use a lot of hydrogen peroxide which works great for me. I don't know if anyone else has tried using it or not and we are all different and need to do what works/ what we need to keep us healthy. I do any and everything I want to, with full approval of my LET guy and my PA.

I do not wear my garments when swimming as I have been told being wet effects the compression when worn.

Day garments and night garments work on different principles. Day garments are for when one is up and active as they work when active. Night garments are designed to work passively while not active/sleeping.

We each have to learn what works for us individually - not what someone says is supposed to work because it works for them. I know that I am 'weird' and certainly what works for me won't for all/most but does for at least me and so some might work for someone else.

I don't wear a glove or gauntlet with my sleeve. The PT didn't prescribe one for me because all my swelling is in my upper arm and armpit area. I wear a compression vest with it when it gets bad.

My PT is a certified lymphedema therapist. I've worn my sleeve without a glove for over a year and have never had swelling in my lower arm or hand. I think it's patient specific depending on which area has the problem. I also get my sleeves from a woman who specializes in fitting.

Dr. Jane Armer is a noted LE researcher, and she has LE in the arm. I've seen her speak several times and she is always in a sleeve, with no hand protection. Like Kicks says, we are all different, and AKJ has discovered that her hand does not swell. I think it's a good idea in this forum to keep mentioning the importance of using glove or gauntlet with a sleeve, for the benefit of newbies who may not yet have found the best LE care. I'm pretty sure we all do some experimentation with what works, what doesn't, and ditching the gauntlet for half a day, a day, a few days...incrementally longer trial periods...that to me is smart experimentation. What I worry about is the LE therapists who haven't embraced the hand-protection best-practice and send newly diagnosed women home with sleeves only. That's forced experimentation, and so unfair.

December, big gentle hugs. I can so understand the anger thing. I remember feeling SOOOO angry when I was trying to wrap. I cried and cried, yelled, and yes, biffed the bandages at the wall....oh and I was so angry I wrote a poem that's on here somewhere. It takes time to work through this that's for sure.

I can't imagine how much of a nuisance arthritis would be in addition to LE which can be a monster to deal with all on its own. I hope you get some relief from that.

When I was first dxd with LE, I wasn't told about the glove/gauntlet either until I saw it on here. I mentioned it to my LEist who thankfully was willing to listen and look into things. Also Im grateful that my LEist is always learning more, and willing to work with me. In my area there really is no one else and the workload is huge. I try and be respectful of that. My glove is mainly a preventative thing as I REALLY DO NOT want to put my hand at risk. I saw a slight bit of swelling and I decided there's no way I want hand LE after what Ive seen other people suffer. As I've said, people will choose, for whatever reason, what they're going to risk. If we were all so different there would be no reason for a forum such as this. Thankfully we can draw from some common factors and learn from those as a base and adjust if necessary.

Blessings to you too!

Hi Aussie Elaine, I wear jobst on my BC side and juzo on the other. Id be really keen to see the new jobst!

I don't have lymph edema, but. Do have a large seroma into my armpit and cording 10 months post BMX. The lymphedema PT said I am susceptible to getting lymphedema and wants me to get a low pressure sleeve. I tried one on at the fitter and lasted about 5 minutes and pulled it off and said I will think about it.

it was only a Juzo size II and I am average size woman. I am wondering if the fit was correct. I wear Medivencompression stockings and they don't bother me. Does the comfort vary between brands? Looking online to see. what else is available

I have jobst elvarex soft glove and sleeve, so far its a number 10 for me

The new band is delightful although I am a person who still needs glue on the band additionally as I exercise and without glue I have slight slipping with this band ....just enough to bother me. The band looks like silicon thread weaved in with the compression threads.

The glove is a winner and its special designed like no other I have seen with more room for our finger webs. This might be good for KICKS webbed fingers. It thought about her as soon as I put it on. However the soft fabric pills on the glove.... but the comfort is there so I can live with that.

I will order again and again until a better product comes along.

I wish I could find my picture of my inflamed arm when I used my silicone dot banded sleeves. The indented dots swelled and became red on my arm when I took the sleeve off. I got very itchy and the worst thing to do is scratch it, which I did. I put antibiotic cream on it When I scratched I had to switch to an over the shoulder sleeve and let it rest for a few days to heal. Ever since that first alergic reaction I still get very itchy on the one area where I scratched when those dotted sleeves are on...Go figure!

I still wear the dotted sleeves as they are not worn out yet. I thought maybe it was the glue brand I used but now im thinking it is the silicon dots because many of you are complaining about them also. The new jobst sleeve band doesnt seem to bother me like the crazy dots do.

Has anyone had a reaction to sleeve glue.

My LE Says to Wear the Sleeve in the Pool....Liz