post deleted
Hi Norbert
I actually do it the other way round. I hate wearing my sleeve. As a result I only wear it if I expect to have a bad day. It has taken me a while to work out when those are likely.
* Travelling. We have a campervan and while touring Europe I wear my sleeve on long journeys because inactivity is a problem.
* Walking, including shopping. Being a size 18 most of the sizes for me are hung on the higher rail. This reaching and stretching isn’t good. I use walking poles when out country walking, which helps considerably.
* Displays. I teach and like to do my own displays, but again the reaching, stretching and using the paper cutter plays havoc.(Due to see Occupational Health as result and try to resolve this)
* Poor health. Anything that reduces my energy levels goes to my arm.
This is probably totally the wrong way to deal with this but it’s exactly the same way as I treat my asthma. I do get caught out and then like you I take to the settee.
It’s part of my new normal which I am slowly accepting.
Regards
Chinook
Hi, I’m a bit like you Chinook, I wear my sleeve when I think I’m going to need it or if my arm starts to misbehave. The problem I have is it is so erratic ! Can be ok for weeks ,which involves me putting up a market stall twice a week and lugging round baskets of cakes then all of a sudden it will just “go” as Im wiping down the surfaces in my kitchen. Am just happy at the mo that I don’t have to wear it all day every day.
So sorry not much help to you Norberte as my lymphoedema seems to have a mind of it’s own !
Sandra x
Hi,I found that if I didn’t wear my glove and sleeve when I first got lymphoedema my arm would ache and feel sort of weak it felt much better with the garments on.The swelling in my hand went right down quite quickly and at my first 6 month check I was told that I didn’t need the silky glove anymore.My arm has gone up and down over the 2+ years, only by a little though.At the moment my arm to me feels like it has gone down and I can now get my fingers around my wrist and they meet (if you know what I mean lol).I find that now I don’t like wearing my sleeve and can’t wait to take it off,I wear it when I’m at work and when I do the housework because both involve lifting and stretching, oh and when I’m gardening 
Melxx
So glad you started this thread. By weird coincidence I decided last night that I wasn’t going to wear my all in one sleeve/glove today.
I’ve had more problems since I’ve worn the sleeve than without. Yes I had tightness and a small bit of swelling prior to the sleeve, but now I frequently get puffing in the hand, wrist and elbow plus pain!
I was getting some shoulder pain prior to wearing the sleeve but it seems to have got a lot worse since I’ve been wearing it. Perhaps its coincidence, I don’t know.
Today, sleeveless I seem a lot less puffy around the hand and wrist.
I know I must speak to the lymph nurse but I feel such a nuisance. I’ve tried various sleeves now and they all cause problems!
take care, Elinda x
Hi
My lympho is v mild, but don’t want it to get worse so I wear mine most of the time, but take it off when I am having a night out, or going to a special occasion. I just don’t want to reminded on those occasions. But as I have small children, I do a lot of lifting. So need it most of the time. Mine is mostly in my hand and fingers, but she didn’t give me a glove, just a sleeve.
Debx
Deb, I don’t understand that. Don’t you find wearing the sleeve makes the hand/fingers more puffy? Or do you find it helps the hand swelling to go down?
The reason I ask is that I had very mild lymphodema above the wrist and a tiny bit I hadn’t noticed at all above the elbow. I was given a sleeve and it cause may hand to become puffy which is why I was switched to the all in one sleeve/gauntlett.
I’d had no problem at all with my hand prior to starting the sleeve.
post deleted
Hi
Norberte, I have been told that apps at my ld clinic are like gold dust, five weeks is the normal waiting time- ridiculous I know.
Yes wearing the sleeve makes my hand more puffy at times, the only thing that reduces the swelling there is the massage. She measured my hand and fingers at the clinic, but must not have thought them bad enough. Next app is March, but will try to chase it up before then,
Not looking forward to the summer. Hope I can wear it less then, if I get it sussed now.
Debx
post deleted
Glad it is easing a bit. I think I will take some photos, but hasn’t been too bad the last few days.,. But I can’t actually pin point why which is a bit frustrating.
Hope it continues to improve for u.
Debx
Hi I was fitted with a sleeve last week and all it has done is push it into my hand - which was OK - have taken it off and my hand has returned to normal - I now have perscription for sleeve with glove - I have to say I hate it all!! I was one of the unlucky ones where the trauma of the op starting the lymphodema off straight away.
If they start doing lymph node transplants I will be putting my hand up to be a guinea pig! A surgeon in Paris has done this op on 24 women and it was totally successful in 22 - see research article.
Does the Lymphodema nurse say its OK not to wear it all the time?
Rainforest