The sleeve - to wear or not to wear?

Hello everyone. I am having a bit of a quandry about my sleeve and hoped you could help.

I have mild lymphodema in my left arm. During the summer, I went on a three week trip to New York and San Francisco. I didn’t wear my sleeve at all (apart from the flights) as I wanted to wear nice vest tops and to feel feminine. The weather was hot but my arm seemed fine. When I got back, I had an appointment and measurements showed no change in the swelling. My lymph nurse felt that I could reduce the amount of time I wear my sleeve - up until then I wore it every day. I’m now not that sure how often to wear it. I have been wearing it less and less and my arm seems fine.

Does anyone else with lymphodema get away with not wearing their sleeve? Am I risking further problems in the future? Any advice would be welcome.

Thank you

i think there is a risk that it could gradually increase. But i do not know how much of a risk. I had slight swelling this time last year and of course was advised to wear sleeve all the time which of course I hav e not. Swelling has got worse during year. I have been on two holidays to Greece & Malta. I found it got considerably worse in the heat both abroad and here! I think they err on the side of caution and everyones lymphatic system is different. No doubt you will get replies from others on here more knowledgeable than I but thought i would just give my own experiences. Currently waiting for an appointment for new sleeves but heard nothing from bcn. I have found the massage of most benefit. When i miss a day it makes a difference.

Hi Hatts

I was diagnosed with mild lymphoedema about 10 months after I was diagnosed with cancer and I was absolutely devastated. I was given a sleeve which I wore all day but I found that my hand became very swollen. I contacted the lymphoedema physio who arranged for me to get another sleeve but again my hand became swollen. I wore it on the plane going on holiday but not the rest of the time and found my arm seemed to be ok. The last time I was seen I explained to the physio that I hadn’t been wearing the sleeve at all, although I had been doing everything else recommended, skin care, simple massage, not carrying heavy bags etc. She measured my hand and arms and in the majority of places the measurements were less than the previous time I’d been measured with no increase anywhere.

I was seeing the physio at the hospital where I was treated for cancer but there is now a physio in my local area and I have been told to just carry on what I’m doing, which seems to work, and if there is any change to get in touch with the new physio.

As starfish says everyone is different and I have done what I felt was right for me.

So far (almost 2 years on) my arm seems to be fine and I have no problems at all.

Hi Hatts

I think it’s great that your arm is in such good nick.

If you trust your lymphoedema nurse and your arm feels and looks OK, then why not carry on as you are doing?

I would be inclined to suggest wearing it for all those tasks that might aggravate it, however, such as shopping, driving, using the computer, housework (especially ironing).

Ditto to being prepared to put it on straightaway if your arm starts to ache.

I agree with Starfish; our lymphatic systems are all different to start with and then all affected to different degrees by our bc treatment, so it’s always going to a case of suck it and see.

As far as sleeves are concerned, they don’t always fit that well - most of us don’t get custom made - and as Miss04 has found, other preventative measures can be very helpful, too. I usually work in the afternoons, so often doss around in the morning for quite a while before I put mine on and my arms don’t seem any the worse for this.

All a question of us each finding the right balance, I suppose…

X to all

S

The lymphoedema service in my area is very poor but I have always been very conscientious about wearing a sleeve everyday. I’ve been going to Austria annually for treatment and have sleeves made to measure. This wasn’t possible this year and had to resort to seeing the lymphoedema specialist in my area. She refuses to let me have a made to measure and gave me an off the shelf one. It fitted my arm ok but as I have quite large hands, it squashed my hand and became really painful. It became so uncomfortable and painful I kept taking it off and eventually stopped wearing it altogether. My arm has not noticeably changed and I’ve had no pain or heaviness. I’m beginning to wonder whether it ever did that much good. I certainly think and ill fitting sleeve can do more harm than good.
Kelley

I think you’re right, Kelley

A badly fitting sleeve can be a menace. We wouldn’t struggle round all day in shoes that are the wrong size, would we? We’d kick them off and go barefoot until we could wear something that didn’t cause us pain and swelling.

And a badly fitting sleeve can push fluid the wrong way, as Kelley has discovered.

Did you go to your a private lymphoedema therapist or the NHS one, Kelley, instead of going to Austria? I’m sorry you didn’t get to Austria this year - it sounds as tho’ it always did you so much good and you’ve always had some interesting news when you’ve come back.

I think all we can expect of sleeves is for them, at best, to stop lymphoedema gettng worse, or to maintain an improvement achieved by other means (massage, compression bandaging, low level laser therapy). I think it’s rare for sleeve wearing on it’s own to bring about much of a reduction. They work best when our muscles are working, so if you’re, say, sitting watching telly of an evening, they do very little good.

X to all

S

Thanks everyone. It’s really useful to hear about your experiences. I did have a made to measure sleeve but it was more uncomfortable than the Medi. My nurse changed the measurements but it still trapped my thumb and slipped down at the top.

I think I will try a period of time not wearing my sleeve and see what happens. Perhaps I will keep one at work for when I am typing as that is the most strenuous thing I do with my arm!

I had trouble last winter with my fingers going purple when I wore the sleeve. Prof Mortimer said it was ok (just the effects of cold weather) but I can’t help thinking that it can’t be doing me much good!

Will keep you posted!