So now I have a new problem, and I’m hoping for a little advice until I can call my lymphoedema nurse. I have seen her twice since I developed full-blown lymphoedema in my right arm in early March. The first time, in late April, she told me I had 40% swelling and put me in a large Sigvaris sleeve with a mitten. Last week, a month later, I went in and she told me how well I was doing–my arm, mostly both sides around my elbow, is the only bad place still and the swelling is down to 20%. She gave me a medium sleeve without a hand. I was delighted till I spent a day and a half in it and realized that my hand had swollen quite alarmingly. Luckily she had also ordered me a medium sleeve with a mitten “just in case” which I immediately put on. Now, two days later, I see that even in this mitten my knuckles are swelling. Curses! I never had much trouble with my hands, and I am horrified to start now. Do you think it could be because the sleeve is too tight that my hands
are swelling? The sleeve feels tighter than the previous one, but
except for the hand is not uncomfortable. Should I go back to the large
sleeve, which seemed to be controlling everything? Should I wait and see if the hand goes back down?
I have had no wrapping, and no mld, my nurse says I need to wait a few months until the radiotherapy effects have completely faded (I’m still a little red). That seems different from what I am reading on other web sites, so I am nervous that she is just too busy to pay very much attention to me. She told me if I got down to 17% swelling the NHS says I don’t need any more treatment, but she would try to keep working with me. I get the impression she deals with people who are much worse off than I am, and doesn’t really have much time to spend with me, but, not to be too much of a baby, I feel both mentally depressed and physically disabled by this. My arm is almost always sore–a dull ache. Should I be wrapping at night? Do the rest of you sleep in your sleeves or use night sleeves?
I hate how uncertain I am with this lymphoedema, and how little support I feel like I am getting from the NHS. I am thinking about finding a private physio who might make more time to see me more often, but I don’t know about that either… All is confusion!
Quail.
Hi
I can,t really help but didn’t want you to feel ignored. I have mild LD in my arm and wrist and wear a sigvaris sleeve and mitten. Unfortunately the LD service in most areas appears to be minimal and the few nurses that there are are stretched to the limit. It is important that you get the right sleeve for you so try and get in touch if only by phone for advice as you seem to have sleeves in assorted sizes and just need to know which to wear. I see a lady privately for MLD because there is none available on the NHS in my area, and she has helped enormously but when I asked her about my sleeve and it’s fit she was reluctant to get involved and referred me back to the LD nurse
Hope you sort it out soon
Andie
Thanks, Andie. Now that Norberte’s gone we’re on our own! I wore the large sleeve for part of one day then went back into the medium with the mitten, which so far seems to be working well, but I’ll call my LD nurse today and check it out. I lie in bed at night feeling my arm swell with the sleeve off and think about whether I should be “wrapping” or wearing one of those sleeves I see on the internet. But from what you say, “going private” may not be the answer either. Ah well, I also feel the weird numbness in my feet from the taxotere-induced neuropathy. The delights of BC side effects!
Quail
Hi Quail, try not to worry or jump too far ahead, I started with hand and arm swelling after radio therapy in January 2008, I was sent to a LD nurse lead clinic at our local hospice and started off with a sleeve with the hand glove. I just wore the sleeve in the day and took it off as I got into bed at night, it took 2-3 months before I could just wear the sleeve without the glove and my arm was 49% swolen. I did have some MLD as I also had some swelling on my trunk but in time it has settled down. DON’T make the mistake of wearing your sleeve at night ( I did) because it makes you hand swell up more than without it, the fluid can’t get back at all if you wear it at night. Just keep wearing the sleeve, don’t lift anything heavy or push heavy shopping trollies because that will just upset it even more. It will settle down in time. I still wear a sleeve but my arm is in the always mid twenties swolen, I am much more layed back with it now, I’ve replaced tops for 3/4 sleeves etc and I leave my sleeve off during the day on holiday abroard. I really try not to let it bother me now or it just becomes so upsetting that it will rule your life, my arm is at its best first thing in the morning when it has been rested without a sleeve at night. Hope this helps, Love Burnie xx
Burnie, You are a star! I keep trying to be calm about it and then freaking out if anything seems to change from the status quo. Your experience makes me much happier, it sounds alot like what I’ve been going through. Now every time I feel a bit panicky, I’ll come back and re-read this. Thank you,
Quail
Hi All glad I’m not the only one missing Norbertes expertise.
Hi Quail. I have MLD and in 6 years I’ve nevr found anyone besides my LD nurse that knew anything about the whole deal. Now however I’ve been discharged becuase they can’t do anything else for me!!! I have a few different sleeves and my prescription so my GP can order more.
I wear my sleeve when I know I’m doing things that have caused swelling in the past. eg. walking, travelling, cleaning and oddly making Christmas cards with my class. (I think it’s the repeated action).
I never wear it to sleep in. I tend to take it off as soon as I can get horizontal.
I recently had a bad episode while on holiday. A long day sight seeing in Portugal followed by hand washing my smalls in cold water was the trigger I think but you can’t always identify what starts it off so you jsut have to get on with your life.
I do take care of my skin using the bodyshop hemp hand cream on a night and I do everything I can to stop being bitten by insects.
However, I shave under my arm (Using cheap disposable razors so I can have a new one each time) and I have acrylic nails done (my technician is very good and doesn’t cut my cuticles or cause damage which could introduce infection). We are advised not to do either.
Sometimes I do get frustrated because it has stopped me doing some things I like to do but then I decide it’s a small price to pay for my health.
Take care
Regards Chinook