It may be a stupid question but how do you know if you have lymphoedema? Mild or otherwise? The muscle in my operated arm feels like I’ve been seriously working out (to the touch), compared to the other arm … but there is no pain/soreness.

Think you would have some swelling in the arm. I have it occasionally under my arm, it’s puffy and soft to the touch.

Not a stupid question, I’d like to know the answer to this question!
Xx rachel

BCC have a publication on Lymphoedema, you can access it on line.

Hi all,

Here’s the link to the lymphoedma publication.*/changeTemplate/PublicationDisplay/publicationId/16/

And the link to the area of this website where Lymphoedema is discussed:

Hope this helps.
Jo, Facilitator

post deleted

What if no measurements were taken? Mine weren’t… Don’t think I’ve got Lymphodema - but am worried about it.

No measurements were taken ! So how do they know …

It’s not a stupid question at all.

When my lymphodema started there was nothing to see. I had no visible swelling. I felt tightness in my arm which is because there was some extra fluid. After gardening I would also feel tenderness to the touch around the wrist area.

I told my consultant who dismissed it. However, it kept happening after gardening and I contacted the BCN who sent me to the lymphodema nurse specialist.

My lymphodema nurse says that in ideal world they should take measurements prior to surgery but it doesn’t happen. Due to her expertise she was able to assess my arm and said it was borderline whether or not I had lymphodema, and she took measurements at that stage. She compared both arms and as my left arm was not my dominant arm she said she would have expected it to be smaller which it wasn’t. She was looking at the percentage difference. I was fitted with a compression sleeve and then had measurements taken again a few months later, my arm had reduced in size which confirmed the diagnosis.

Your arm/shoulder area might be sore due to the surgery. I am having shoulder problems completely unrelated to the lymphodema some 2 years down the line from surgery.

The best thing is to continue to do your exercises every day. Also take the necessary precautions such as avoiding hot baths and saunas, avoiding getting scratched and cleaning any wounds, spraying on savlon and cover, don’t have blood pressure, blood taken or injections on your at risk arm.

Next time you see your Oncologist or surgeon or BCN tell them about what you’re experiencing. If you’re worried, give your BCN a call today. Nobody wants a lymphodema diagnosis but as Norberte says it’s best to check. Also remember that most people with lymph nodes removed don’t go on to develop lymphodema. However, no-one is going to think your stupid for wanting to have it checked. Elinda x

or, if anyone does think you’re stupid (like your consultant), remind yourself that you’re being grown-up & sensible & they’re being … stupid!