Hi ladies, I have just been Dx with Lymphodema in my arm , I have a sleeve and also some taping under my armpit. I have been shown SLD and am doing it daily,my question to the nurse this morning was for how long do I have to wear this sleeve? How long before I see a difference? She said the aim now is to stop things getting worse and this is forever now. I am wondering if anyone has seen an improvement and been able to stop wearing the sleeve ? If so what do you recommend I do to get my arm back to normal.
Thanks ladies
Jean
Welcome Jean and bad luck having to join us (although we are nice really, but LE isn’t.)
I’ve seen a real improvement over the last year, but not so much that I’m ready to quit the sleeve! Personally, cooler weather helps me. I think it helped that I lost some of the excess weight, and get a lot more exercise now than I used to, sweaty out-of-breath stuff that helps with central return. I know that sounds hollow to many ladies on chemo/hormone treatments that make them feel like cr@p, makes calories stick to them and makes their joints ache so much they can barely get to the loo never mind the gym, and yes I’m sorry, it’s just my story at the moment. I do still eat so I am at risk of putting it all back on.
My biggest tip to avoid deterioration is being very careful with lifting. I was always the one doing the heavy stuff before, but that has had to change and the sleeve does remind me. It also reminds other people not to ask me, and occasionally total strangers will spontaneously help, eg. in a cafe recently when I already had a lot on my good arm and was wondering how I could cope with the tray as well, and the lovely assistant offered to bring it over for me, I nearly cried for the unexpected kindness!
I have heard of ladies who after maybe a year or so are able to go for a special occasion dress without the sleeve, with no ill effects, don’t know how common this is. I have also met some ladies whose LE developed horrifically, and I will do whatever it takes to avoid that. There are people on these forums who have spent large amounts of time and worry being hospitalised with cellulitis infections secondary to their lymphoedema, which can be a very serious illness. If you get used to the rotten idea, This is for life. then any progress, and there may well be some, is a real achievement. For the longer term there are some doctors researching the potential for grafting new microscopic lymph vessels to replace what we have lost, for very serious cases, that would be a cure for those ladies. I don’t know when we can expect to see that become a reality, don’t hold your breath waiting for it.
Thanks Hymil for taking the time to reply to me, I am guilty of lifting things I have to have more disipline with myself !
I just have to accept this is not going away, I am going to start swimming soon, nurse said that’s very good as water helps move the lymph, I also need to try and loose some weight.
The sleeve is comfortable just looks odd.
Jean
Ho Norberte you made me giggle there ! Thanks for advice I will look at the other threads.
Jean
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