Hi. I was DX with ibc in 2008. Following treatment including further surgery I was DX with Lymphoedema 2 years ago. I hated it and decided to follow advice of massage, skin care, excercise and wearing a sleeve I suppose some might say obsesively. I had an assessment with the lymphoedema nurse today and it has now reduced to 0.5%. She doesn’t want to see me for 12 months. For me the advice has worked so I hope this gives others hope that it can be reduced.
Take Care Andie

Hi Andie. Congratulations on reducing your swelling, that’s great news.

If you don’t mind me asking, how often did you do exercises, and how much did you wear your sleeve? Also, are you continuing to do those things now to maintain the reduction in swelling, and how often do you have to wear your sleeve now? I have been recently diagnosed and am just trying to get a sense of how things may progress. Many thanks x

Hi Andie ,
good news , I was dx last feb and Lymphodema appeared in July , I too have had a significanr redulction in swelling at my 6 month check my arm had reduced from 10% to 4 % I wear my sleeve all day and take off at night, im not quite as good as you with the massaging/exercising but I do do it, just not religiously im a bit naughty i forget and then my arm lets me know my pains in the armpit … but just to let you ladies know it caNn improve I know we have Lymp for life once we get it but we can reduce it if we are good

Take care all xx

Wow thats great news Andie, well done - yes it would be interesting to know a bit more about what you did in detail - please? I’ve just started a course run by our lymphodema service - I thought I’d be bored cos i thought I’d read everything there was to read etc - however today i learnt the difference between creams and lotions …had no idea before that what we need for skin care is creams such as netrogena and e45 and double base, and not lotions which have too little oil in them …
oh and i knew we aren’t meant to be ovr weight but never really understood why - apparently the fat cells squash the lymph drainage tubes …imagine them sitting there squashing away …ha, even more keen to loose some more weight now, not that I’ve a big lot to loose but some
will post each week if I hear of something I don’t think has been mentioned on here…
all the best lasses, Nicola


Before you read this I did warn you that I am a bit obsessive about coping with Lymphoedema.
My management is continuing despite my improvement, with the hope that it stays reduced,The sleeve I wear incorporates a gauntlet because the main problem was between my wrist and my elbow. I wear it absolutely every day from about an hour after I get up - when I have done everything I need to in the bathroom - until last thing at night just before I get in the bath. I wear a black one because I feel the awful beige ones are pretending to be normal skin. I have a problem, why hide it, it is just part of my life.
I carry out simple massage at least 12 times a week. every evening and mornings monday to friday, followed by E45 cream at night and a body cream with a nicer smell every morning. I treat myself to a session privately of MLD every 6 - 8 weeks where she also uses a machine called a Hivamat for massage,
I used to do the excercises daily as recommended by the Haven, then I was pointed towards a minitrampoline/bouncer. About a year ago I had the chance to do a course of Lebed classes, where the instructor said that any exercise was good so now I rely on the fact that I walk 2 of my grandchildren to school every day. A distance of about 2 miles. I make sure that the hand on my affected side is not left to dangle but kept either in my pocket or raised to the strap of my shoulder strap.
I also do gentle dry skin brushing daily, not sure if it helps but for a lady of senior years it helps keep my skin in good condition.
Although never hughly overweight over the course of the last year I have managed to lose 15 pounds.
I try to stay aware of danger, gardening only with good protective gloves, no heavy lifting with the affected side, and savlon everywhere I might be, to deal with nicks and scratches immediately.( I own 3 cats so that can be a problem).
This is what is working for me - you did ask!

Take care

Hi Andie, thank you for telling us what you do to manage your lymphoedema. Like you, I can be obsessive about these things, so don’t mind doing them as long as they work. I also do the exercises from The Haven but after doing them every day for more than three months I am utterly bored of them and hope to replace them with something else. I hope your swelling remains manageable and under control x