I don’t like my lymphoedema compression sleeve

pammiesydpammiesyd Member Posts: 30
does anyone else wear a compression sleeve? I just got mine yesterday and it makes it very uncomfortable for me to use my IPad. I am right handed and my right arm is the one with Lymphedema. And 6 years after surgery. Any suggestions?


  • AfraserAfraser MelbourneMember Posts: 1,623
    I have worn one for just on 5 years and finding the right one took a little time. The first was not made to measure. Wasn't at all uncomfortable but my therapist didn't feel it was sufficiently effective. My second was a custom made all in one  (hand attached) made locally (Melbourne). I was never depressed during chemo but that sleeve nearly did my head in. My hand swelled, it started popping holes after 3 days, and was a cow to get on. I hurled it across the room once! Mind you, it would have been smarter to have a really close look at it and then I would have realised there was a clear bottle neck, my therapist had a fit when she examined it. It had been really badly fitted. Lesson learned, don't put up with something if it feels all wrong, at least ask! Third go, custom made German Jobst which works, with a detachable hand, is comfortable and wears phenomenonally well. Pricey way to get there, but it's been good ever since. So ask your therapist about it. It may be you are just getting used to the feeling, but it should not stop you from normal hand/arm use. 6 years after surgery is in my opinion downright unfair!! You feel you are moving on and over it, and then that strikes. I was diagnosed after 7 months, so it was just one more thing. I have a terrific therapist, my arm is very stable, affects really nothing I do and I have no discomfort at all. I work, go to the gym, travel and so forth.  If you look closely you can see one arm is a bit fuller but it's not that obvious. The sleeve can get a few curious stares, I tend to refer to it as my bionic arm! Best wishes.
  • mum2jjmum2jj Member Posts: 3,538
    Is it custom?  Mine are and do take a bit of getting used to each time I get a new one. Maybe after talking to your therapist check if you can wear it a for shorter periods to begin with. If it hasn’t been measured by a therapist then you may need to get that done. I too have learned to live with mine and it’s pretty under control. 
    I found my lymphedema the hardest part of my diagnosis. Go figure. 
    Paula xx
  • pammiesydpammiesyd Member Posts: 30
    Thank you both for your responses. My sleeve is custom made. I see my therapist in 10 days, so I will ask her then. I definitely don’t like the idea that I will possibly have to wear it forever. I guess I need to get used to the sleeve and be thankful that I have no further signs of cancer. But I still hate it!!! 
  • lrb_03lrb_03 Member Posts: 814
    Hi @pammiesyd. My 1st sleeve was an off the shelf sleeve and gaunlet. Lasted 2 months before my 1st custom made sleeve and glove arrived. 
    Like @mum2jj, I have found lymphoedema the hardest part of my breast cancer to cope with. Mine started very early, only 4-6 weeks after surgery. I lived in hope for the first year that I wouldn't have to wear the sleeve all the time, but no such luck for me, although it does happen. Hopefully you'll be luckier than I was.
    After 12 months or so, I realised I really hate beige, and also that I could use this to advocate. I have become involved with a local lymphoedema support group. I also decided that if people were going to stare at my sleeve anyway, I'd try to do something with it. My last 2 sleeves have been black- I'm permanently in a sleeve and glove.
    My latest set are "cranberry" which I would actually describe as a deep plum colour. They are jobst elvarex, and this time I have opted for a cuff type band around the elbow which is a bit softer on it. Still trying to decide if it's actually any better. I only got it last Wednesday. 
    Oh, and mine's left arm, & I'm lefte handed, so absolutely get where you're coming from. I fjnd it a little easier to use a (the word won't come, lol) pen thing with the rubber on the end on my touch screens. 
    I'm sorry that you've ended up with lymphoedema so far down the track. 
    Take care
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 563
    Hello @lrb_03
    Do you mean stylus?
  • pammiesydpammiesyd Member Posts: 30
    I will try using a stylus. Thanks 
  • lrb_03lrb_03 Member Posts: 814
    Thank you @Giovanna_BCNA. That's exactly the word I was looking for. It still hadn't come to me, lol. Chemo brain alive and well, 2 1/2 years later
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,018
    edited March 6
    I had all sorts of trouble with mine at first but my therapist said just take it off for a break every few hours and that was much better. I still can't sleep in one as I bend my elbow in sleep and my hand goes to sleep. I was thinking in future if i had to wear it in sleep I might make a long button hole where my veins are in my elbow so the pressure isn't on that spot.

  • AfraserAfraser MelbourneMember Posts: 1,623
    I must admit I would not like to sleep in one, my therapist has not recommended this on the basis that the normal gravity/fluid problem with an arm is considerably reduced when you are in bed. 
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