Oh you lovely ladies. Thank you for your advice. I’ve also had a rod inserted in my humerus (not funny to me and the trouble it’s caused you wouldn’t believe!) so I’m not too sure what the problem is that I’m having, but I just know that my arm “doesn’t feel right”.
I’ve been practising with my sleeve tonight and finally got it so that it doesn’t roll down - so here’s to tomorrow and hopefully a good day
Going to pour a large g’n’t now after the sh!t day I’ve had. Haven’t even started on the car business etc etc etc plus needing to go round roundabouts twice before I could figure my way back to where I wanted to go. Plus, some tw@t parked his car halfway across my drive and it took me forever to back out.
I am one of your fellow scousers so hopfully we will meet this summer sometime! It was me with the 7%. I got myself depressed thinking about wearing a sleeve and the nurse kept saying it was my choice but would prevent it worsening. Now I have read your thread I have given myself a kick up the butt! As soon as it arrives (speacila order through pharmacy), I will be wearing it.
Do you massage? I have been doing it every night and also some mornings for 3 wks now and think it’s helped a bit. The swelling is softer.
Yes, I’ve started massaging and exercising only in the past few weeks, and I think it’s helped. I’m terrible about looking after my own body. If I exercise the arm too much though it hurts for quite awhile.
Not having too much luck with the skin glue. Got in a right mess with it yesterday. The sleeve rolled down again and because it had glue on it I couldn’t straighten it. Then it got on my t-shirt. Then the phone rang just then and I had glue on my fingers and they stuck to the phone. Today I haven’t pulled the sleeve all the way to the top and it hasn’t rolled down so far - and I haven’t needed to use the glue! It feels much more comfortable now, so I think I’m almost there with it. I’ve decided the sleeve’s too long so I’ll phone the nurse on Monday and get a shorter one.
Yes, I’m looking forward to meeting you and anyone else. I’m not a shopper though so I’ll pass on that and just have a meal/coffee/whatever.
Granny scouse,
Does your sleeve have little silicon dots on the top to help it stay up? If not you should ask for one that does.
I met someone who used to use the glue and it actually took the skin off her arm once and she got an infection.
If your sleeve won’t stay up i think you should ask for a made to measure one, which should, hopefully stay up because it fits properly.
Regards
kelley
hi what a relief to find other sufferes on her ive had lyphodemia since my op in 2006 and its getting worse each time i go ,to be honest the nurses dont seem to know what they were doing ,and then the last time i went was seen by a differant lady and boy did she know her stuff .ive been wearing the wrong size glove and sleeve all this time ,mind i do have good days and bad ,and she precribed me differant sleeves and glooves they are made by sigvaris at least thats the brand name on the box .and the sleeves have an elasticated top abit like hold up stockings ! and i have found them much ,more comfortable to wear as they are not so thick. but still noticable ! afraid when i dotake them off i have fluid still in my finger joints and under my armpit .dont know wether this will ever go but its managable .they really dont give much attention to this condition do they . lynn x
Have you been shown any exercises, deep breathing, self lymphatic drainage (SLD), etc, etc at your lymphoedema clinic that would help you to help yourself? Sometimes they also have a video they can lend people.
It might be worth asking for a course of MLD (Manual Lymphatic Drainage) at the clinic - your new, genned up, lymphoedema nurse ought to be qualified to do that. It might be that if you can have some initial help to shift the fluid under your arm, etc, you can then maintain your arm yourself with SLD, etc. (I too have sleeves like you describe, mine are supplied by Haddenhams, but actually made by a German company called Schiebler. They are really comfortable and never roll down! I had Mediven at one time but they are too long for my arms and rolled down, plus I had so much nerve damage down my arm I couldn’t bear the scratchiness of the fabric!)
You are right - lymphoedema gets very little attention - more’s the pity.
