I was diagnosed with Lymphodema on 1 February and the sleeve thing with hand piece really depressed me.
I have been seeing young very switched on Lymphoedema nurse and we came to a compromise - I wear the sleeve only when doing housework, gardening or driving for more than 30 minutes.
I have been doing aquafit twice a week since February, daily exercises and SLD and a lot of walking. The aqaufit really helps because you are using water as resistance and a lot of the exercises are similar to the ones I was told to do daily.
Result - arm swelling has reduced from 28% to 18% as at last appointment mid April. I am really pleased with this and I feel that I am in control again.
Rainforest
I,m really pleased for you. Keep up the good work.
Maria x
I wrote this because I hope that it will help someone who has just been diagnosed with Lymphoedema not feel it is the end of the world - as I did in February.
Thank you…Always good to hear an inspiring story. This thing is very depressing. x
Hi rainforest,
I do the same as you but because I reacted badly to the material the sleeves are made from. Works for me and so glad it works for you. I used to feel like an invalid wearing a sleeve. I well remember on holiday speaking to a lady wearing a sleeve. She said that it was part of her life. I think that she was trying to cheer me up but she looked so miserable and I could only think ’ that’s not for me’ Okay, my arm swells a little on some days but I just have to work on it a little longer and it goes down again.
E
I dont wear all day, every day. In the morning if i do aerobics (in front of tele), i wear it. Then its off whilst i shower and make-up. Then on as i do housework and all else. As a hairdresser, I feel I have to remove it before i wash hair then back on whilst i blow dry. I think you have to do what is best for yourself. if i go lunch with friends, I tend not to wear it as it is so ugly and also because my arm is not doing any work for the sleeve to compress against. I have tried lazy days where i do little and dont wear the sleeve/glove and find that can be better as it gives my hand a rest from having the lymph squidged to a pad on top of my hand. I too was diagnosed 1st Feb and can see a slight improvement in my wrist and forearm and definately an improvement in my hand.x
Hi Guys! I am another new lymphodema sleeve sucker. I got my sleeve, on Thursday and it is taking some getting used to. I tried resting my arm, I tried using my hand and fingers more, I tried keeping it elevated at night, but whatever I do, it swells. So I have to get used to this new addition to the clothes line ( I already have softies and a wig hanging in the bathroom, now there is the sleeve). Never mind, I am sure I will get used to it, but at the moment at the start of the hot weather, when you are bald and have just had a mastectomy, it is depressing. I’d rather have the sleeve than an elephant arm though. sorry I sound so moany. xx
Hi Kulakatz,
You don’t sound moany, more like you are coping with all the hassle. Have you been given exercises and shown how to move the lymph away from your arm? What kind of sleeve are you wearing?
E
hi , following my cancer treatment i have developed lymphodema of the brest. every one seems to talk about arm and leg on the web in general,so finding people with it in the breast seems difficult. I was wondering if any one has any advice for breast lymphodema. at he moment it is extremley painful and i cant seem to get rid of the infection i have due to it , any advice , lise
Hi Waves,
Just in case no one replies to you I think it would be sensible for you to phone the help line here. 08088006000
Hope this helps.
E
Hi Waves,
What a bummer! I have lymphoedema in both my arm and my breast. There is SLD (simple lymph drainage)which you can be taught for both, you might also find it easier to get MLD (manual lymph drainage) on the NHS with it in your breast. However, you won’t be able to have/do either while you have infection, have you been given antibiotics?
I suggest you see your GP for ABs and talk to your BCN about seeing a specialist for MLD and to be shown how to do SLD yourself.
Good luck!
Julie