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Can I get a nicer sleeve???

24 REPLIES 24
littlemrs
Member

Re: Can I get a nicer sleeve???

thanks for the tip Andie. I'll see if I can do that.

Guest user
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Re: Can I get a nicer sleeve???

Hi

I have black sleeves and they came on the NHS. I looked them up on the internet and found that the ones I wear come in either beige or black so just asked my friendly local pharmacist to get the black ones for me when I handed in my prescription and he obliged. They did take a little longer to come in though.

Good Luck. I prefer the black ones during the winter but plan to use the beige ones during the summer(If we get one) when I wear short sleeve tops. I'm quite lucky because the beige sleeves I have are not too bad in colour.

Andie

littlemrs
Member

Re: Can I get a nicer sleeve???

I am so excited I've got my tattoo sleeves. I've shown them off to family and can't wait to wear them out. Very easy to order and I love the symbolism given to the designs.

Norberte you are so right about children's reactions to the hideous gloves. I am aware in offering my hand to children that they may not want to hold the fabric one. I have also had children stroke both hands and make comments about the different textures- just in an enquiring way not being unkind. I'm going to ask my BC nurse about black ones. Someone in my BC group has a black sleeve and I'm sure she got this on the NHS.

Annie22
Member

Re: Can I get a nicer sleeve???

Have you tried the Mary Portas 'armery' collection. Like tights for the arms? I bought a black lacy pair. You can order online via her site at House of Fraser. They're made by Charnos.

Annie

Guest user
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Re: Can I get a nicer sleeve???

hi littlemrs
might be worth looking at the lymphediva site in usa - horrendously expensive, but they do the sleeves that incorporate a 1/2 glove ('gauntlet') if that'd do sometimes:
http://store.lymphedivas.com/store/pc/viewCategories.asp?idCategory=49
otherwise, i find kids cope better if i wear black sleeves & gloves (lymphediva no good for me as i need the proper gloves) - when i first started wearing all the gubbins, i found that several kids of my acquaintance wouldn't let me touch them which was a smidge upsetting, but once they got used to the black ones they coped better with the robot ones
black ones mostly not available on script, of course, although theey are for some maakes so might be worth having a chat with your ld nurse - it'd be v expensive to buy enough to use for school every day, my haddenhams ones are about $45 each

littlemrs
Member

Re: Can I get a nicer sleeve???

thank you so much for the link. Can't wait to order. I didn't know over sleeves existed. Sadly I also wear a lovely beige glove- no answer for that although I sometime wear an oversized bling ring (not too tight) on that hand.

The only positive thing I've managed to do is to get my sleeves/gloves on repeat prescription from my GP so can now get as many as I want rather than 2 glove evety 6 months. You can imagaine what the gloves looked like after that long!

Guest user
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Re: Can I get a nicer sleeve???

Hello Princess
As they say OMG. Ive just looked at the tattoo sleeves through the link. They look beautiful. I have a black lace lymphadiva sleeve, and I've loved it, but it is starting to look a bit tatty. I was beginning to wonder if I could talk my OH into a new one.
I'm going to struggle to choose a design because they all look stunning but they will be great as this Winter roles into Summer.
So glad you asked the question.
Love
Chinook

Guest user
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Re: Can I get a nicer sleeve???

mornin all
i'm having a lucky break from sleeves, gloves & corset - stubborn cellulitis, on week 4 of augmentin & it's still fighting back!
i've got a drawer full of sleeves that all don't quite fit! jobst, haddenham, medi ....
they're all different types of '(caucasian)skin tone' or black - even the black sleeves aren't the same colour as the black gloves!
lymphodiva sleeves look fun & there have been lots of posts raving about them on the threads here - my impression is that black lace seems to be the favourite
& hadn't seen the sleeve covers - thanks lulu, i like that idea as long as they're not too thick, as the sleeves are plenty hot enough on their own especially in the summer
have emailed them to ask what the tops are like, & may well give a pair a try - much cheaper than lymphodivas (although these are covers to put over an existing compression sleeve)
hope everone's ok
i'll take a quick look at the other lymphoedema threads, then read for 1/2 an hour before i drop off to sleep again (for any 'oldies, yes the book does go thunk as it hits the floor but not as loud as the laptop!)

Lulu34
Member

Re: Can I get a nicer sleeve???

One of my lovely friends I met on here in 2009 has set up a site called my tattoo sleeves...
http://mytattoosleeves.co.uk/

Lulu

Guest user
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Re: Can I get a nicer sleeve???

Oneof the children at school asked me if I was corpse today after having to start wearing my sleeve again! An when I said no he asked if I was in a coma- have to say that I can understand what he meant as the sleeve does look strange!Lol! Better than the woman who once asked me if I wasn't wearing it in the wrong place- cos her granny used to wear her stockings on her legs!!!! Not funny at the time! Am now determined to either look at lymphedivas or a tattoo type cover!

Guest user
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Re: Can I get a nicer sleeve???

Hi, I too went to my first clinic today for Lymphodemia, It taken nearly an hour to measure me for my sleeve then i had to take the prescription to the orthopedic across the road who then re measured me, This is now been ordered from Germany, same colour as my skin.

I live in Spain, and since i was DX in Nove this is the first treatment i have had to pay for, this is for the sleeve 145.00 euro's and not because i'm English apparantly even the Spanish have to pay for this.

I am also due a lymphatic massage everyday for the next 3 weeks...

How treatments differ is quite amazing...

good luck with your sleeve, Love Teresa xxx

aroma
Member

Re: Can I get a nicer sleeve???

just to let you know my sleeves are now nicely decorated with fabric crayons and i have done assorted colours to match my clothes ,why not give it a try ,after all if we have to wear them they may as well be nicer looking ! x

Guest user
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Re: Can I get a nicer sleeve???

I have finally got to see the lymphoedema nurse today - partly my fault as I didn't think my problem was too bad and was just putting up with it - turns out that my left upper arm is 15% larger than my right, not terribly bad but the nurse said still bad enough to warrant treatment.

I now have a sleeve - but it's not American tan, more of a pale creamy-fleshy colour, although lighter than my skin since the recent good weather! I have to say the relief to my nerve pain was almost immediate once I put it on! I've also been prescribed Amitriptyline (sp) which I'm not too happy about but if it keeps the pain at bay so be it.

Apparently the colour of the sleeve I have is a relatively new one and I have to say it doesn't look too awful - probably won't be saying that in a month or so when I just know I'll be sick to death of wearing it 😞

aroma
Member

Re: Can I get a nicer sleeve???

just thought id update you onmy sleeves .i bought some fabric crayons in an art shop and have put patterns on my sleeves ,so far they look great ! might be an idea for those who hate the american tan colour !!

aroma
Member

Re: Can I get a nicer sleeve???

have recently tried to snazz up my sleeve ,found some iron on stars and flowers only thing is i was too frightened to have the iron too hot in case i melted the sleeve !1 found it ok but as i have to really pull the sleeve up as its very tight some of the pattern came off .am going to try fabric pens next ,will let you know how i get on .trial and error i think !!!! lynn x

cupoftea
Member

Re: Can I get a nicer sleeve???

Hi
That info is so good-I am similarly delighted by the 'skintone' of my sleeve and gauntlet. Just lovely, and a real draw for questions about what has happened to one's hand. I now have a slightly better coloured gauntlet in place of an orange (No way anyone's skin is that colour!)glove. Am stockpiling long sleeved summer tops, but taken mine off for a break today and yes, so nice!
C Xx

aroma
Member

Re: Can I get a nicer sleeve???

i so agree with you on the awful colour of these sleeves ,i hate wearing mine especially in this hot weather ! but its esential to reduce the swelling in my arm and hand ,but boy are they hot! wish they did them in a lighter fabric and assorted coulors too .will go on that web site and hacve a look for more trendy ones or maybe think about making up some designs to send to manufactureres might be the way to go??

Guest user
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Re: Can I get a nicer sleeve???

Hi Irene, everyone

If you mean that we shouldn't have to pay for something that doesn't look as if it fell out of Queen Victoria's wardrobe, then you are absolutely right.

We shouldn't have to pay to get our lymphoedema treated, either, but an awful lot of cancer patients are forced down this route.

People with leg lymphoedema have a much wider and nicer choice of garments. Apparently it's not 'cost-effective' (ie profitable enough) to offer the same for arms, according to the Medi rep I spoke to once; there aren't enough of us, it seems :o. Which is where the American sites come in; the number of potential customers they have means they can offer better products.

I hate my sleeves, too. But I wear them a lot because they are such a help, and being bi-lateral, I don't have a good arm to rely on.

It's ultimately very short-sighted giving us such ugly things to wear, as the more unsightly and conspicuous they are, the less we tend to wear them and the less good they do us.

And if we were to be given a choice, I'm sure it would make us feel that we had a bit more control over our condition. too.

I do wish there was a cure - or just a pill to pop that would control it!

X to all

S

Guest user
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Re: Can I get a nicer sleeve???

This topic really annoys me. It's like taking a step back in time to when NHS specs were soooo bad, and everyone knew you were too poor to pay privately.

We have gone through enough without this additional added extra. I hate my sleeve and gauntlet and barely wear them outside the home.

Guest user
Not applicable

Re: Can I get a nicer sleeve???

Hi everyone

If you wear a sleeve and are not a member of the LSN (and therefore in receipt of their quarterly magazine), you may like to know that Activa sleeves are now available in black as well as the enticingly named 'sand'.

Class I and Class II compression only, tho'.

X

S

Guest user
Not applicable

Re: Can I get a nicer sleeve???

Hi everyone

I developed lymphoedema last December, given a medi sleeve, but made my hand go blue. Given a Juzo which was alot nicer, softer and abetter colour. Unfortunately
in June my arm was still increasing in size especially round the elbow so then given a made to measure sleeve which also covers most of the hand as swelling was starting there as well. This sleeve was again a medi urrrrg. But in September my arm had reduced, going back in December hopefully find another reduction. Lymph nurse hopes to put me back into a juzo if this happens. It is trial and error finding the correct sleeve and I'm waiting until this happens before going to the expense of buying my own. I wear mine from when i get up, well after washing hair etc, and take it off after work roughly 6ish,had enough by then. I still do my exercises and massage twice a day.

Take care

Lynne

Guest user
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Re: Can I get a nicer sleeve???

Hi Kelly

You're welcome. Glad you found the info' helpful. 'Tangoed' is absolutely right! It's a vile colour and it always puzzles me why, if a genuinely skintone bra can be made, they can't do the same for these sleeves.....

Hmmm....wearing sleeves - I'm not working at the moment, so I tend to doss around without them (feels so nice!) for a while in the mornings, then do a bit of massage (I've also got a low-level laser, so I usually treat my arm(s) with that for a bit as well). I then tend to wear them for the rest of the day unless it's a really special occasion as I don't think it does the compession features of the sleeve any good if it's put on and taken off more than necessary - and, besides, I'm not well organised enough to plan my housework, etc around my sleeve wearing - or should it be the other way round??!!!

When I was working, I very often took them off in the evening once I had finished all my chores.

BTW, I've got black, white and beige ones, to try to o-ordinate a bit with my clothes - an essential morale booster, I feel.

In the winter, I don't worry too much as I'm in long sleeves anyway, but come the summer I think I'll splash out on some different, and prettier, colours.

All the best for now,

X

S

princess18
Member

Re: Can I get a nicer sleeve???

Hi S,

as ever your help has been amazing, thank you so much. Yes I do have medi sleeve and my right arm looks as though its been tangoed so its definately not skin colour! LOL!!!

I don't consider myself to be vain but if I've gotta wear a sleeve forever I at least want one that I like. I shall certainly checkout the website you mention. Do you wear your sleeve all day every day or do you just wear it when you are doing housework and other more physical stuff?

Thanks again,

Kelly
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Guest user
Not applicable

Re: Can I get a nicer sleeve???

Hi kelly

Yep, the 'bog standard' sleeve is quite hideous, isn't it? Really encourages one to wear it diligently!

There are lots of different types of sleeves and many are available in all sorts of colours. Unfortunately, these are not normally available on the NHS (who seem to stick with Medi sleeves as much as possible - is this what you've been given?)

Have a look at the new website 'stepup-speakout.org' - there are links to manufacturers such as Juzo and organisations such as lymphedivas who do coloured, glitzy, patterned, less obvious and more comfortable sleeves.

I couldn't get on with Medi sleeves myself - they irritated my skin and the compression was too high for my tennis elbow. I did manage to get Haddenhams Venex sleeves from the NHS - their beige (whoever calls it 'skintone' is taking the mickey) is better than many and the white was also available at no cost, too. Haddenhams sleeves are actually made in Germany by a company called Schiebler and are also available 'off the peg' in, I think, black, blue-grey, navy and chocolate brown, although I don't think the NHS will supply any of these colours.

If you want to buy them yourself, you will have to be sure to get the sizing AND compression right. Some UK based suppliers/manufacturers will not sell direct to a patient without confirmation from a qualified lymphoedema nurse/private lymphoedema therapist of exactly what you need, although it is possible to order sleeves for yourself from abroad (mainly the US) via the internet. If you have a helpful lymphoedema nurse, she may be able to liaise with the manufacturer to make sure. If not, a private lymphoedema therapist will also be able to measure your arms properly and maybe even take care of the ordering for you.

Hope this helps a bit

X

S

princess18
Member

Can I get a nicer sleeve???

Hi ladies,

As you may or may not know I was diagnosed with lymphoedema in my right arm and chest last week. I had my first appt at the lymphoedema clinic today where, among other things, I was given a sleeve to wear. Truth be told it is quite hideous and is a sort of 'american tan' colour!!

So, I was just wondering if its possible to get my own sleeve from somewhere? Something which is a bit more in keeping with my age rather than making me feel 86 when I'm only 36! If so, do I just take the size thats in the sleeve I'm wearing now?

This is all new to me! Thanks in advance,

Take care,

kelly
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