Lymphoedema Awareness Month: Specialist organisation highlights four lymphoedema symptoms everyone should know

During Lymphoedema Awareness Month, one specialist organisation – ‘Lymphoedema United’ – is aiming to help spread the positive message of this cause, but also highlight four key symptoms of the disease we should all know.

Lymphoedema United is a free-to-join organisation and source of useful information and guidance for its members, much of which is authored by partnered experts and medical professionals.

Its founder, Matt Hazledine, who has had the condition since 2011, says people of any age should look out for the following as possible symptoms of the disease:

1. Swelling in limbs - this is one of the most common symptoms and can occur in the entire limb or part of it.
2. Tightness/tension in limbs - your limbs or affected areas can feel tighter, fuller or heavier.
3. Tighter clothing/jewellery - you may notice your clothing, jewellery or watches feeling tighter or not fitting as well, due to swelling.
4. Cellulitis - you may suffer from more regular cellulitis, which is a serious bacterial infection of deeper skin layers. Affected areas of your skin can become red, hot and painful and will require antibiotics.

Some people with lymphoedema can also have recurrent episodes of cellulitis, which can be challenging to manage and a source of great anxiety. This fourth key symptom is also what directly affected Matt and led to his development of lymphoedema. Matt said:

“In 2011, at the age of 40, I experienced a severe episode of cellulitis in my left leg, which hospitalised me for 14 days and subsequently led to my lymphoedema. In the first couple of years with the condition, I really struggled to come to terms with adjusting my life to accommodate my very swollen leg.

“Throughout this, I always felt I would have benefited from an additional support network and more expert advice to help guide me through the difficult periods. This is exactly what we’re trying to achieve with Lymphoedema United and one of the main reasons we get medical professionals to offer their expertise to our members.”

Lymphoedema itself involves the presence of chronic swelling (oedema) that occurs because of a failure of the lymphatic system to drain fluid from the spaces in-between the cells in our body. It may develop in someone with a previously healthy lymphatic system that has been damaged – for example, by cancer treatment or infection - as a ‘secondary lymphoedema’, which is the most common type of lymphoedema. ‘Primary lymphoedema’ can occur when the lymphatic system fails to develop properly. It can also occur when someone is born – sometimes as an inherited condition.

While there is no known cure for lymphoedema, spotting the symptoms earlier can make the treatment and management of the disease easier.

Alongside the support guidance offered by Lymphoedema United, Matt has given this general advice on symptom relief:

“Everyone has different experiences with lymphoedema, but our experts promote what we call the ‘Four Cornerstones of Self-Management’:

1. Compression - Most people living with lymphoedema will endure the daily ritual of wearing compression garments. This includes the struggle of putting on ‘donning’ and taking off ‘doffing’ their compression garments and finding other clothing items that fit you comfortably and are easy to wear. For instance, for me, wide fit shoes and specialist Gentle Grip socks without tight elasticated tops have now replaced all my pre-lymphoedema shoes and socks in my wardrobe. But ultimately, you need to find compression items that are right for you; these should not be painful when you wear them and if needs be can also be made to measure.
2. Skin Care - This is an essential part of daily self-management for people who have lymphoedema or who are at risk of developing lymphoedema. Keeping your skin intact is the first line of defence against developing infection in the affected area and looking after your skin helps it to perform this important function.
3. Healthy Lifestyle - balanced diets can help with weight management, but keeping active and moving is essential. This doesn’t have to be vigorous exercise but simple movements that we can all make as part of our typical day. Sitting still for long periods of time should be avoided, where possible.
4. Lymphatic Drainage - To assist the lymphatics in draining the fluid, there are various forms of lymphatic drainage techniques, which can be performed manually or by using a machine called a compression pump.”

Anyone looking for further support directly or indirectly can join Lymphoedema United today for free. However, if you have lymphoedema or you’re concerned about it and its possible symptoms you should always seek advice and treatment from a medical professional.