header photo

L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Primary Lymphoedema

Lymphoedema is a chronic (long-term) condition that causes swelling in the body's tissues. It can affect any part of the body, but usually develops in the arms or legs.  Lymphoedema especially primary lymphoedema often takes several years to get a diagnosis whereas cancer related lymphoedema is diagnosed quickly because the patient is in the system.

Unfortunately, in 2021 we still have doctors who are incapable of diagnosing lymphoedema which is totally unacceptable.  Be prepared to be told you are fat, and we understand how important weight control is, but to sweep away a patient’s concerns when presented with a swollen limb with a generic answer beggars’ belief. 

Symptoms of lymphoedema can include an aching, heavy feeling in affected body parts and difficulty moving them.  Other symptoms reported by L-W-O Community support group members include:

  • Fatigue
  • Feeling as if legs feet are going to burst
  • Inflammation
  • Joint Issues
  • Peripheral Neuropathy due to the pressure of the lymphoedema on nerve endings
  • Pins & Needles
  • Restless Leg Syndrome


Without treatment lymphoedema will get worse, please do not leave any swelling that does not go away, do speak to your doctor and if you are a patient with a swollen limb please be persistent.

Not just one disease

Primary lymphoedema - that developed at birth or shortly after puberty and is caused by faulty genes or missing genes.

This page was first published published September 2013 

This page for Primary Lymphoedema was republished 03/04/2021

Updated 06/04/2021