How does Lymphodema affect your everyday life?

Hi all

I have recently been diagnosed with Lymphodema of the hand and arm, although I think it might be the Breast too! Appointment to see specialist at the end of the month.

So I have looked on here and on other sites, but can’t find much on how Lymphodema affects people in their everyday life. I am currently in a Nannyjob that I love, BUT the children are now at school full time, so although my bosses are happy to keep me on, I feel it’s time to move on.

Now here’s the dilemma, I don’t really know how the Lymphodema will affect me, if for example I was working with young babies/children that I would be lifting, also pushing a buggy, possibly a double buggy! I am in the process of being interviewed for a nanny share, which will invole two babies aged 8 and 10 months. Now prior to having BC I wouldn’t of even thought twice about whether or not I could do the job. But now my confidence has taken a nose dive, and I’m worried that if I am offered the job, I might not be able to cope with it.

My BCN said that people cope, but she also said it’s about listening to your body and resting when you need too. Sadly working with two babies, for 12 hours a day. Doesn’t allow much down time.

The last thing I want to do is start a new job, and then find I can’t cope. So I’m hoping that some of you ladies who have been living with Lymphodema for a while now, might be able to share with me. If and how it has affected your day to day living.

Also how often do you need check ups/hospital visits. As these are all things that I will need to think about. I know the answer to all these questions will vary from one patient to the next. But I am going round in circles thinking about this, and could just do with a bit of advice. From people who are already dealing with it.

I will also give the helpline a call.


Sal xx ???

Hi again,

A sensible thing to be thinking about. I can say apart from having to wear the sleeve and hand piece it doesn’t really affect me. The nurse says to avoid repetitive movements and heavy lifting with that arm.

However since my diagnosis my husband has been diagnosed with terminal cancer and now has to use a wheelchair and can’t drive. So I do all the driving, and lifting the wheelchair in and out of the car, plus pushing him around of course. I can say (having used a double buggy in the past) the wheelchair is far heavier. So far it hasn’t had a detrimental effect on the arm, in fact I have just mean measured and my arm has gone from being 15% larger than the other one in May to only ,08% larger now. I wouldn’t recommend it, but still! I also have a 15 month old grandson who is not light, and I manage to carry him around when they are here.
I get seen every 6 months now.

I don’t think working with children would be a real issue, although I guess there would be some risk caused by repeatedly picking them up. But I wouldn’t let BC run your life!


Ps, if you like to swim my nurse said it is really good for lymphodema, especially breast stroke.

Hi Nanny Sal (again!),

Lymphodema varies so much, I think. Not just person to person but across time, for example, I have it in both arms. On the left, I wear a sleeve during working hours five days out of seven. I can tell when I do too much as it aches. On this side, it’s manageable and easy to adjust to.

But, on the right, the swelling is in my right hand and lower arm. I have to wear a sleeve and glove all the time. Carrying, lifting all aggravate it. I can’t write or type easily because the compression in my fingers makes them go numb. I also get blue fingers. Clothing also a problem as I can’t get things to go over it and people notice and ask questions, which means I can’t hide it from others.

Having said this, I’ve learned to adapt by not doing things (not always a good thing) e.g. too much writing! Or by carrying shopping in small loads, and by elevating my arms in the evening. You have to find what works for you and you do learn to manage and adapt e.g. I use hand warmers to stop my fingers going blue etc etc The big no no’s for me are not so much repetitive movements, but holding one position for a long time e.g. downwards so cycling (which I love) where I lean and arms bear weight in a static position or down dog in yoga. Also walking and keeping the arms still makes my swelling worse - the physios have a name for this but I can’t remember it! Swimming helps and taping and massage.

I think you are likely to adapt to your lifestyle and if you can increase the physical demands slowly that will help. On the other hand, it’s different with work that you can’t plan I’d pace yourself with.

Hope this helps! Rattles