questions for experienced/ long term lymphies. Advice appreciated!

Hello again I’ve got sooo many questions going around my head! Was wondering if any of you with more experience of lymphoedema can help comment or answer?
I was (previously) a very active (running, martial arts, gardening, teacher mother of 3 primary school aged children) and I now have lymphoedema in my dominant hand and arm. I think that it is around 12 percent bigger than the other side. It is pitting, gets slightly better overnight and there are no skin changes. I have been given a mediven sleeve and glove to wear. I’m under the care of my bc nurse at hospital. I am wanting to keep doing as much as I previously did for as long as humanly possible. So wanting to get best possible care during these early stages!

  1. Is it likely that the sleeve/glove combo will reduce my swelling or is it only there to stop it swelling more?
  2. Is this the only/best treatment for me ?
  3. Should I ask to be referred to the separate specialist lymphoedema clinic in my city?
    I have many more questions but these are some of my biggest ones at the moment!
    Any ideas or further advice? Big thanks!

Dear parky,

While you are waiting for some replies to your post I thought the BCC publication about lymphodoema might help.  I’ve attached a link:

www2.breastcancercare.org.uk/sites/default/files/bcc5_lymphoedema.pdf

Very best wishes

Janet

BCC Moderator

Thanks Janet my bcn has given me this one :slight_smile:

O dear you’ve waited for ages for a reply. I haven’t been on the site for a while. Here goes … I’ve had lymphodema for 6 years in my dominant hand/arm. Yes I’d ask to be referred to the specialist centre because they have more accurate measuring equipment and may get you referred for the new micro surgery which some cases are suitable for. I would ask about getting taught self massage too.

I was told to build up to activities slowly so your arm gets used to it. I’m currently seeing a lymphodema consultant because of problems I’ve had and he has emphasised weight loss/ control. He said they don’t know what the actual mechanism it but there seems to be a link between managing lymphodema and being over weight. He also suggested aqua-aerobics classes. I took his advice and have found a dramatic improvement in how much exercise my arm can tolerate. I wear a sleeve and glove in the water. I also do a Pilates class with a helpful teacher. If the exercise is weight bearing on the arms I adapt it by leaning on my forearms rather than my hands etc.

Some of the management is trial and error. Good luck : )

Thankyou littlemrs - I’ve got a referral to specialist centre in a few weeks time. Seems like a long way off tho’! Am wearing the sleeve and glove every day, doing post op exercises and looking after my skin. Swelling isn’t going down at all tho’ In the meantime is there anything else that I could be doing?My man says to try a MLD session - but as far as I can tell it’s very expensive, you don’t just have one session and the jury’s out to whether it works in reducing swelling or not. Any thoughts?