Lymphoedema Awareness Day

This video (produced by the ALA) is a patient’s lymphoedema story. We encourage anyone affected by lymphoedema in any way to get talking and ask questions. Together we can raise awareness.

Do you see yourself as having larger legs? Self diagnosed “cankles”. Forever wearing long skirts and pants, hiding those legs? Shoes not fitting because of swelling? Do family members suffer the same? Do you all blame genetics??

Have you ever had lymph nodes removed or radiation therapy following a diagnosis of cancer or melanoma?? Have you suffered a major trauma and since been unable control swelling?? If you answered yes to any of these you may be suffering from lymphoedema or Lipoedema. And let’s face it they sound like a big deal… and they can be if left unmanaged. The Fantastic news is management is available and effective!

Ok so what exactly are they?? To understand them let us firstly have a brief look at the lymphatic system. A network of varying sized vessels that transport lymph, the clear lymphatic fluid: made up of of white blood cells, waste products and proteins, to the lymph nodes where harmful products are filtered out and prevented from re-entering the bloodstream. The lymphatic fluid once “filtered” re joins the venous system. Essentially The lymphatic system is a fluid mover; moving: excess fluid from the tissues back into the bloodstream. It defends the body against disease and removes waste products from the tissues.

Lymphoedema is a swelling of a body region, however differs from say a knee or ankle swelling. The difference is protein. Lymphoedema unlike injury swelling is high in protein and occurs when the lymphatic system becomes overwhelmed: so when the load on the system is greater than the capacity to transport and filter the fluid. This can occur as a result of primary or secondary lymphatic overload.

Primary lymphoedema is congenital or genetic. The lymphatic system has not formed properly from the beginning: there may be less vessels or larger vessels that don't function well. For some people it is noticed in childhood and for others it can develop at puberty or later in life.

Secondary lymphoedema is the result of damage to the lymphatic system: most often associated with cancer, surgery, lymph node removal or radiation therapy, but has many other causes such as trauma, venous disease, immobility, infections such as cellulitis, filariasis (mosquitoes in tropical areas of the world carry this) and obesity.

Along with the arms and legs Lymphoedema can affect hidden and unexpected areas such as the trunk, breast: particularly after breast cancer treatment, the head, neck and genital areas. Lymphoedema is often asymmetrical usually affecting only one limb.

Often the lymphatic system may be impaired before realisation of swelling or lymphoedema. The first signs of lymphoedema are often a heaviness in the affected limb, aching, pain, tension in the limb, feeling a tightness of fullness in the limb or the feeling that clothes feel tighter. Others may notice swelling which can decrease with elevation.

ACTION: A quick test for you to do if you've been reading and think any of the above may have applied to you: push your thumb into the tissue and hold for 30 seconds. Now release the thumb. Usually the skin will bounce back. If protein rich fluid (lymphoedema) is present, once released the skin will stay depressed and can take longer to return to its resting position. Compare this to your other limbs? Is there a difference?? If so get an assessment : there may be many other causes of this pitting oedema such as heart/cardiac concerns. Always seek some advice from your GP if you are unsure.

Ok so if swelling goes down with elevation it’s all good ?? right ?? I don't need treatment??

The answer is; Lymphoedema is progressive with identified stages. If left untreated can develop further into a swelling which does not decrease with elevation, increasing skin changes and increasing risk of infections such as cellulitis. Treatment can become more challenging and the effects on quality of life are more significant. Lymphoedema can be treated effectively with complete decongestive therapy.

But wait: what about my large legs: both of them!? The ones no-one can tell me about: oh it's just genetic they say….. Don’t worry we hear you!! You may just be talking about Lipoedema. Lipoedema occurs in women only and is a disproportionate leg size not affecting the feet, and can occur in all limbs. Lipoedema can be tender to touch and painful on pressure. Unlike lymphoedema the swelling does not severely pit and on the test above skin returns to rest quicker. A lot of women have tried weight loss or elevation which have minimal effect. This is because lipoedema is not swelling. It is hereditary with the deposition of adipose tissue (fat cells). Unfortunately the gene has not been identified, but we know it’s severity can be affected by hormones such as those involved in puberty, pregnancy and menopause, which are all times when lipoedema may show its not so welcomed face. The good news is awareness of lipoedema is increasing and the benefits of complete decongestive therapy have been recognised.

At Active physiotherapy we utilise a complete decongestive therapy approach. An evidence based approach including intensive therapy of bandaging/ compression, manual lymphatic drainage techniques and massage, skin care and exercise, which then carries into a maintenance phase where self management and empowering each individual to take control is our goal. Assessment times are increased allowing time for increased discussion, goal setting, measurements and discussion of the treatment options available. Our goal is for therapy to be driven by you and what is best going to suit your lifestyle as management is long term. Early intervention is a crucial part of management: we encourage discussion about lymphoedema pre-surgical where lymph node removal is likely and prevention strategies. Knowing the early signs and getting on top of it all early can reduce symptom severity and help you to take control. If you have any questions or feel you need to talk to a lymphoedema trained therapist or make an appointment please do not hesitate to contact us on (02) 6925 7734.

Most of the information for this blog post was resourced from the Lymphoedema training and education module (ALERT) and the Australasian lymphology association.

Cristy Houghton