will this hand ever go down?

For the last 2 months, I have had lymphodema in my right hand and wrist. In the mornings it is fairly flattish. I have a sleeve that goes over my hand and that causes the fingers to get more puddy and the pad on top of hand to get more puddy too. I dont think this is extra lymph, just the same stuff compacted. When I put my special glove on, it takes the pud out my fingers, but my knuckles and the pad on top of my hand remain podgy. I have a couple of differant gloves and they both do the same. I am about to pay for another short course of MLD and wonder if putting the glove on straight after will help or make it worse? I feel like it goes wrist to hand, hand to wrist.
I am getting quite negative now, because I spend alot of time in spain and have short sleeved tops and all this stupid armoury on. When my measurements were taken, it averaged just 5% but that was cos it is all in 1 area. Upper arms are fine.

hi i also get this but also have it in my arm as well .maybe a glove would be better for you to wear thats attached to sleeve? ive just had mld and found my arm reduced in size by 20% so give it a try .maybe a talk to lymphodemia nurse ? good luck .x

Hi, I have it mildly in my right hand, wrist and seriously in my upper arm. Have been wearing a glove + sleeve and doing self massage once a day since Nov, 2010. Saw the lymphodemia nurses again a few weeks ago, and the overall reduction was almost 50%!! Maybe I will be able to wear short sleeves in the summer??!!


That sounds very inspiring. I do the simple massage some days , but not sure if i am helping and started to feel negative. however, I have a course of MLD starting tomorrow, so expect to see some results soon.
I find it all a bit frustrating. I cant even pinpoint what triggered the swelling in the first place. I’m not usually negative, but am getting fed up of taking the glove/sleeve off at night and seeing more swelling than was there in the morning. I wonder if I would be better off without the glove.
Thank you for your stories, it does give me hope x

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Hi positivethinker

I have had a similar problem. I actually didn’t have puffiness in my hand prior to wearing the sleeve and the sleeve has caused it but it’s very mild.
I found the sleeve and gauntlett were the worst. I’m going for my first MLD on Saturday so I’ll see what she says and suggests.

On the plus side, my arm (non dominant) is now back to be smaller than my right one even though I put on half a stone! That happened in only 3 months.

Norberte - that’s a really good idea. I’ve never been offered taping.

Hi Elinda…Please do ask. I am curious to know whether it is actually making it worse or not x

Afraid she didn’t really have any suggestions for the hand.
I think she was keen for me to keep having treatments at £45 a shot. She said there was no point in my going for monthly treatments as I needed to go each week for 6 weeks first off to develop new pathways for drainage, then two weekly and then monthly - I can’t afford it.
Is this what others have been told?

Interesting that it is to find new pathways. I have been advised daily or at least 3 times aweek. I think it is awful that this is not funded, when it can lead to such a severe disability, not to mention the phycological damage.

Positive_thinker, you said you are dismayed because when you go to bed the hand is worse than it was before you put the caboodle on in the morning, but it would be even worse if you didn’t have the stuff to wear, that’s why we get it. Standing up makes our arms hang down so much harder for the lymph to return than when we are lying down in bed. If you missed the sleeve for a day and just went out in skin, it would surely be much worse by bedtime without the sleeve controlling it? Do you wrap or have a night sleeve or anything? I found a big improvement when i was able to finally wear my sleeve properly, all day every day.

M1yu, well done, that’s great progress!So glad for you.

Elinda, Might there be any alternative or charitable funding for your treatment, have you any friends that could do a sponsored skydive or whatever? Six weekly treatments would be less than £300 all told, and by then you would know how well it’s working - and it’s not an unreasonable fundraising target for a small support group? Also, some work organisations or professional bodies have a benevolent fund that might consider funding cancer treatment for a longstanding member…maybe talk to someone like macmillan for possible financial work-arounds and alternative creative suggestions? Maybe clearing the “treasure in the attic” to an auction house would achieve two purposes at once?

Hoping things improve for you soon.

Postiviethinker - are you meaning SLD daily or 3 times a week (not MLD)? I do SLD every day although the therapist thought I hadn’t been shown all the areas to do. I asked if she would show me but she told me to buy a book!
Do others do SLD on their arm?

Hymil - thank you for the ideas. I can raid some savings I’ve been keeping for emergencies for the 6 treatments, that’s not so much the problem as the long term.
I already have to have back/shoulder massage every 4 weeks sometimes more or I get terrible pain. The lymph drainage and the back massage would amoutn to £85 every month - that’s a lot now I’m not working.

I suppose I need to speak to my lymphodema nurse re some of my questions. For example, does it always get worse or can it be managed by compression sleeve and SLD and exercises only? She seemed to think last time it could as she suggested trialling without the sleeve.
Has anyone else been told about new pathways being created for MLD?

M1yu - pleased to hear you’re doing well, haven’t seen you on the forum for a while. How is everything going for you?

Elinda…It is MLD. A physio is doing it, she wants to see me every weekday for 3 weeks. I might add, I am not in uK at the moment, I am in europe and this is the way it is done here. Once the arm is down, they supply a sleeve to prevent it swelling up. I have sleeves from my mcmillan nurse in Uk, but was told the NHS would not fund MLD. All cancer treatment has been in UK till this bit. I had a lady here that I have paid 100euros for 3 x 1hour sessions but now getting it on the state… She thinks it will be down in 3 weeks…It ihas been swollen for 10 weeks so we will see.
I too have heard it said that the MLD creates new pathways.

Hymil… that makes sense about laying down and the hand draining better. The trouble with me from the time i get up right up to bedtime , i do not stop, maybe i should spend more time laying around, watching tv and doing some SLD. Probably would help to do that a few days…NO chance of that!!

Go on, give yourself a break, hook up with the [other!] square screen - if it was a chemo line or dialysis day would be much worse. Rest isn’t excessive self inguldence, Think of it as prpo-active treatment for a condition that can get very nasty if you try to ignore it. I’m spending quite a few hours a week going out running, making sure i can keep off the excess weight and cut my oestrogen levels to fight recurrence (I couldn’t hack the brain-numbing effects of tamoxifen), doesn’t slouching on the couch sound more fun than that?!

Just put the chocolates out of reach!!

Hi Positive thinker.
You cant beat lying down to improve how the arm feels and looks and personally I don’t think it’s being self indulgent or lazy. I have kept my lymphodema under control using sleeves, massage and resting. I also find walking using walking poles helps considerably. My hands and fingers always did swell when we went out walking any distance. Keeping the poles quite long so your hand is kept up works best.
Expecting the poles to be working hard this Easter up in Scotland.
Happy days