Optimum hours for wearing sleeve

Hi everyone

Waiting for sleeve with glove to be put on order with local doctors surgery.

Just wondering how many hours a day you could get away with wearing the horrible thing? It would be great if you could wear when you get home from work and then all night in bed and take off in the day - how would that work out?

Also notice from ‘Sleeve on Sleeve off’ that some you only wear it if you are doing heavy tasks e.g gardening, housework etc.

Anyway would appreciate some advice as I am looking for a regime that is bearable.

Thanks - Rainforest

I need to wear mine all day every day. Sorry! By doing this the lympho improved alot and my BC nurse said maybe it would sort itself out and I could stop using sleeve. I was foolhardy and went on to wearing just glove then did a lot of lifting and on next measuring my arm, found it had puffed up more than ever.

I think it has to be trying what suits you. maybe at first wear it all day and once condition has settled you can get away with just using when doing heavy tasks. the best person to ask is you lymphodema therapist or BC nurse. Other professionals have sketchy understanding as I found when I went to see Occ Health about going back to work. The report they wrote to my employer was faulty with advice that would probably have made my arm worse.

It’s not so bad. It just becomes part of getting dressed like putting on make up. Also you can get coloured ones or dye them. I embellish mine with big (loosish) ring or bracelets.

You need to speak to your lymphodema nurse or clinic about this. Mild lymphodema as I understand often settles over night (mine does) and its during the day when you’re undertaking activities and just have gravity against you that you need the sleeve.

My nurse said to wear it as much as possible to start with. I’ve been doing that the past 3 months and my arm has improved. She has said I can start trialling not wearing it sometimes and see how I get on.

It is a huge blow being diagnosed with lymphodema. I think most of us newly diagnosed are going through a stage of trying to accept the wretched sleeve. Stick with it though because when you know it’s helping it seems much more worthwhile.
take care, Elinda

Hi Rainforest
I have mild arm and hand lymphoedema and for the past year+ wore my garments all day every day as well I’m afraid-(with a few exceptions for parties/on holiday etc, when I wore it part of the time most days.)but not at night ( can cause problems). It does feel horrible at first and is the last thing you want after everything else, I’m sorry to hear you are in this postition. I got used to it far more quickly than I thought I would, and it can make a huge improvement. At my last appointment the measurments were almost normal again, and after discussion with the nurse, like Elinda I am also now trialling having some periods not wearing it, so there is hope!
C

I wear a sleeve most days. I have two compressions a light one that I use as a preventative measure and a heavy one for when my arm is swollen. Sleeves shouldn’t be worn in bed and ideally they should be put on as soon as you can once up in the morning. If I know i am going to be using my arm a lot ( my affected arm is my right one and I am right handed) I wear the stronger compression one.

I try and see a nurse lymphodema nurse every six weeks, she has taught me self drainage massage, which i find does help. If i know i am going to have a day that does not involve too much activity I don’t wear a sleeve. I find swimming really helps, but the back stroke is the best stroke

Rhian x

Hi

I have mild lympho and wear it all day at the moment. I occasionally take it off on evenings out. For me it not too uncomfortable but I am concerned about the summer. I just really don’t want it to get worse.

Sorry it is such a pain for you.

Debx

I’ve been thinking about the total number of hours I wear the sleeve during the day and it’s usually around 10 hours. I always take it off about 6pm but I do exercises then. When I’m watching tv I usually try to do some arm exercises as well.

I never wear mine on the odd occasion I go out for the evening.

What you’ll probably find is that your arm actually feels more comfortable with the support of the sleeve. I agree though about summer - I’m wondering how I’ll cope in the heat with this.

I’ve never seen anyone else with a sleeve on and yet there must be lots of us out there. Has anyone else? I think it can feel isolating which is why this site is so great.
Elinda x

Hi

My children’s councillor who has had bc three times has one. Her lympho is v severe and that is one of the reasons I wear mine a lot. You would think someone could have come up with a more breathable fabric. How often can we get replacement sleeves? I wash mine with vanish soap and it is still grubby. I just got then in dec.

Debx

Hi
I’ve had mine replaced each time I have a check up (approx 6 monthly )They used to be ordered at the hospital where I’m seen, but now the Lymphoedema nurse writes a prescription for two of each garment, which I take to my GP surgery.
I’ve done that twice now and each time I’ve had to chase it up-I don’t think they like the non-usual prescription format its on-easy to sort out, but I’d recommend keeping a copy if anyone is switching to this way!
I stick mine in the machine, Deb. The sleeves are fine after washing this way, and they get their shape back, but my gauntlets get grubby really quickly and stay that way-I’m conscious of them because although no one ever sees the sleeve, people often comment on the gauntlet, and I’d at least like it to look clean!

2 gloves aren’t enough! I’m hoping I can get my GP to prescribe 3 as I’ve been switched over to him prescribing from the BC nurse. Must be a switch in funding?

I wash mine in the machine too. Now have unslghtly stains and 6 months not up yet!

Hi

I wear my sleeve all day but sometimes take it off after I get home from work! This seems to work for me.

I am going on an aeroplane for the first time since BC next week and I will be wearing 2 sleeves ( I have lymphodoema in my left arm and am at risk in my right!) and a compression garment as I have truncal lymphodoema too! A really glamourous look for a trip to Rome!

Elinda
I mamaged to wear my sleeve through the summer and it wasn’t too bad. I don’t know anyone else who has to wear a sleeve either but there must be lots of us out there.

Jackie x

Jackie - hope you have a wonderful time in Rome, how lovely!

If you don’t mind me asking, did have lymph nodes removed both sides and is that why your other arm is at risk?

Glad to know you found it okay through the summer too.
Elinda x

I have recently ordered a sports compression sleeve, and I am awaiting its arrival. Its Black, it doesn’t have a glove but two of my spare sleeves are just arm ones so i am going to give it a go. Sports people wear compression garments more and more these days and the range of colours etc is good compared to the lymphodema ‘skin’ coloured ones we have to put up with. i know there are some really great designs from Lymphodiva etc , but they are so expensive. I will let you know how i get on with the sports one.

rhi x

Hi everyone - thanks for your comments - this site is so useful and helpful - the lymphodema nurse did say that it was not helped by being overweight - so I am going to lose weight - also need to because my blook pressure has gone high since being on Tamoxifen - I think that is what gets to me - was thinking OK radiotheraphy last port of call then get back to normal - only to fine new problems!!!

I think tbh it’s trial and error to some extent, both with when to wear the sleeve, what type (eg with without hand/fingers, all in one hand/arm, separate hand/arm, degree of compression etc).

Mine is mild but was much worse; mainly in hand and fingers now. Nurse was fairly helpful but nobody knows your body like you do. I wear a low compression glove (with fingers) about half of the day, a high compression sleeve and glove when out with the dog/lifting things etc, and when it’s starting to ‘flare up’, I use a Tubigrib bandage overnight.

I’ve also learned from the lymph. nurse to do kinesio taping which works brilliantly and is much more comfortable than wearing a glove, but I think might be quite a phaff if you had whole arm involvement.

Can also highly recommend lymphedivas.com for funky coloured and patterned sleeves. xxx

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Hi Ladies
I got my posh sleeve from Lymphediva at the weekend. It fits as well as the NHS one and does the job. I chose the black lace pattern. It isn’t so much black more grey but this makes it less Anne Summers which I did wonder about. Duty and handling was £26.01 so it has been a an expensive piece of kit. It does look so much better though than the mis matched sleeves and gloves I was wearing and it was a birthday gift.
It didn’t make any difference to the length of time I wore it though. We went to York for the weekend and after walking around for the day I couln’t wait to get it off when I got back to camper van. These days it’s the sleeve and my bra that come off as I walk in the door before my shoes.
I too find the gloves make my fingers sore. And apart from my hands being 2 diferent sizes the shape looks ok. My right hand is 3 ring sizes bigger than the left on a day I can get my ring on.
I wonder about the business opportunity of making these things but hopefully it will be a reducing market. Already less lymph nodes are being removed as treatment improves.
Regards Chinook

thanks for the link I’m going to take a look. My only query is whether the size and compression meets the ones dished out by the NHS?

On the lymphedivas website, they have a sizing chart here
lymphedivas.com/shop/sizing-chart/
There is comments about the compression classes on the FAQ here
lymphedivas.com/faqs/about-lymphedivas-garments/#7

What you have to remember is that US use different class of compression to UK/EC so look at the actual mmHg definitions,
mmHg means "millimetre of mercury it’s just one of the scientific ways of defining pressure. The US class 1 (20-30mmHg) overlaps our class2 (23-32mmHg). If you’re currently functioning well in a UK class 1 (18-21mmHg) then their class 1 will be too strong.
So depending what your NHS sleevs is, find the size for that, in mm at the wrist, elbow and upper arm, which should be on the box but anyway Mediven put their sizes on the net and so do Actilymph; (check your arm to see if you agree!) then take those measurements to the lymphedivas sizechart.

BTW if you are moving between Actilymph and Mediven (i did because actilymph don’t seem to do an over the shoulder holder) you might also find this is an issue because their sizing are also not the same. Actilymph are UK based, but Mediven come from germany so they work to EC standards. Like how in Asda jeans I can get into a size 16… Read the label!!