Do you always have to wear a sleeve

Hiya All
My BCN thinks I have it and sending me to clinic to see about it - lower arm is actually smaller or the same and then higher up its up to 3cms bigger, however this has looked this way since surgery and I just thought it was a bigger arm, however before rads noticed small swelling at elbow, bowt 1.5cms , this didnt increase during rads which was to the auxilla too - as Im sure you all feel the same, Im really upset at the thought of having to wear a sleeve permanently. I have no pain, exercise and moisturise it and have it supported during the night. Did anyone only have to wear temporarily or is it a for life thing?

I wore a sleeve until the lymphodema was under control, probably not recommended by some but I hated the damn thing, mine seems to have settled in my thumb!! the exercises moisture etc will work along side the sleeve and I bet you’l have it under control by the summer months, I think its a personal thing mine was like yours a small difference to top of arm but also thumb and fingers.

Sue x

I was told once my arm reached less than 10% I would be able to have a couple of days a week of not wearing it.

take care

Hi lisaf and all

Bad luck about the arm - but great that your bcn has referred you on to a clinic promptly. The earlier you get help, the better.

I think much depends on you, your lymphatic system, your lymphoedema, your lifestyle, etc, etc. It could well be a case of ‘suck it and see’ - you may find it settles and you only need a sleeve for housework, shopping, driving, flying, etc. There again, you may not. With some people (as with Sue - you lucky thing!) it does seem to more or less disappear, I’ve heard.

No-one can make you wear a sleeve, and they don’t make lymphoedema better on their own, they just help to maintain any improvements and stop things getting worse

I wear mine most of the time, but could probably get get away with less. Once they are on (I’ve got it in both arms), they tend to stay on - probably idleness on my part - and the fact that I don’t have a ‘good’ arm to rely on any more makes me a bit nervous of making things worse.

The sleeves are hideous, I agree (but you can get nicer ones than are provided on the NHS). Patient compliance would be better if these objects were less grotesque, I’m sure. I’ve got black and white ones as well as the so-called ‘skintone’. These are a bit of a morale booster for me.

How big is your arm, now Lynni?

X to all


Thanks Bahons - so sorry you have got it in both arms but have read some of your posts which are very helpful!

Hi Bahons2

My arm has gone down but still not to where it was before cellulitis. I was re-measured for a new sleeve two weeks ago (she didn’t measure my good arm to compare). My new ones which arrived just before Christmas didn’t fit. It was nothing to do with the infection, but they had made it up wrong. The hand bit especially around the thumb was far to big, goodness knows what went wrong. Thanks for asking.

Hi Girls

I don’t really understand what is going on here!!

My BCN has said my lymphoedema is 19% and is only in top of arm - nothing below elbow. Apparently this is “mild” so she said I just need to do these exercises and I dont need a sleeve.

I am to be reviewed in 6 Weeks.

Everyone else seems to get a sleeve - can anyone help??!

Love to all

Alise x

Hi Alise

I’m not an expert, but I wouldn’t say 19% is mild (are these the bcn’s measurements?), even if it’s only the top half of your arm.

You say you are going to be reviewed in 6 weeks. By whom? Not the bcn, surely. You should have been referred to a clinic for an expert assessment and a decision made there as to whether you need a sleeve or not.

I think you should press for a referral to a lymphoedema clinic. Can your GP/onc/surgeon help if your bcn won’t do this?

Hope you get some more help soon- let us know how you get on, won’t you?


How annoying about your sleeves! More than annoying, simply pathetic. Did your lymphoedema nurse give someone a rocket after that? Were they Medi sleeves? Hope your new ones come soon.

X everyone


Yes Bahons2 they were Medi and I think a rocket went somewhere lol.

Alise when I first found out I had Lymphoedema it was 20% told it was moderate and supplied with sleeve straight away. Unfortunately it didnt fit properly and my hand started swelling, advised to stop wearing it and arranged to go back for another fitting, but I had to wait 6 weeks for next appointment. When I got there my arm had increased to 33%. What I’m trying to say is don’t leave it, your arm may get worse and then its a bigger problem, oops sorry forgive the pun lol.

Good luck

Hi Alise,

My lymphoedema is now 19% and in my forearm only.My lymphoedema nurse taught me how to and do massage and excersises.

I also try to swim most days

I am happy wearing my sleeve, so far haven`t experienced the summer though!!

Good luck,

I was told mine was 4% but that I’d have to wear the sleeve for ever. Mine was in the lower arm and quite noticeable, but the Lymph clinic seemed not to want to do anything but give me a sleeve. I found a lady who does lymph drainage and its worked wonders - swelling gone right down. I still wear the sleeve most days to keep it like that, and I’ll go back every 6 weeks for a top up treatment, but at least I feel I’m doing something!