Just Diagnosed?

If you’ve recently been diagnosed with lymphoedema, this page is for you!

Adjusting to living with a long-term condition can be overwhelming and you will no doubt have many questions over the coming weeks and months.

Please know that the LSN is here to help you. You can find answers to the questions we are most commonly asked on the ‘Your questions answered’ section of this website. If you want to understand a bit more about the physiology of the condition, you can find out more under ’What is Lymphoedema?’. Or, for an overview of what living with lymphoedema looks like and how to manage it, keep reading.

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Accessing a Lymphoedema Clinic

We hope that you have been referred to a lymphoedema clinic – if not, please contact the LSN office on 020 7351 4480 to find out where your nearest clinic is. Unfortunately, there can sometimes be quite a wait before you are seen, but take heart, there is a lot you can do before your first appointment to start making a difference to your wellbeing. This includes skin care, exercise and movement, and weight management.

 

‘The support I was given by the LSN was 100%. The staff went out of their way to supply me with information.’ LSN Member 2016

Skin Care

In the areas of your body that are swollen, the skin can become overstretched and fragile, conversely, it may also seem thicker and tougher than the rest of your skin. Your lymphoedema also means that the affected area is more prone to a particular skin infection called cellulitis. You can find more information about cellulitis here. It is really important to try and prevent this happening and one way of doing this is to improve the condition of your skin. There is more information in the LSN’s ‘Skin Care for People with Lymphoedema’ fact sheet, which is free to members. The LSN suggests the following daily skin regime:

Clean your skin

  • Wash your skin carefully at least once a day. Dry the skin gently, paying particular attention to any skin folds and between the fingers/toes. Use a soap substitute, such as aqueous cream, emulsifying ointment, E45 wash.

Check your skin

  • Look for signs of redness, or injury (scratches, bites, etc.)
  • Treat fungal infections such as athlete’s foot quickly if you have lower limb swelling.
  • If skin damage is found, ensure area is clean, apply an antiseptic and check regularly for signs of infection.
  • If you think you may have an infection, then contact your doctor as soon as possible.

On rare occasions, lymph fluid leaking through the skin is observed. This is called Lymphorrhoea and can happen if the limb or affected area swells very quickly, if the skin is fragile and thin or if there are breaks in the skin. This leakage can vary in severity, but can lead to infection, so prompt attention is necessary – ideally by a lymphoedema practitioner. If you do not have access to a lymphoedema clinic then see your practice nurse for advice.

Moisturise your skin

  • Moisturise your skin each day.
  • If your skin looks and feels ‘normal’, any bland moisturiser will be suitable, but if your skin is visibly dry and/or scaly a soap substitute followed by a suitable moisturiser/emollient should be used – suitable examples include epiderm, coconut oil BP, aveeno cream, diprobase, double base, lipobase, Hydromol cream.

There is more information in the LSN’s ‘Skin Care for People with Lymphoedema’ fact sheet, which is free to members.

‘The LSN fact sheets were extremely useful when I was first diagnosed – well written and informative.’ LSN Member 2016

Exercise and Movement

Regular exercise and keeping moving helps to control swelling, keeps joints flexible, improves posture, balance and gait and helps to control your weight. It can also induce a sense of wellbeing.

What sort of exercise/movement should I be doing?

The sort of exercise or movement that you can do will depend on your age, general fitness, mobility, and other medical conditions. Talk to your doctor or practice nurse about what would be safe for you. To have the best result on your swelling, movements have a better pumping effect when they are done slowly and smoothly. Deep breathing also stimulates and improves fluid flow through the veins and lymph vessels. ANY movement will help even if you are only able to start with a little.

Remember

  • Only carry out exercises/movements that are within your level of endurance – it is always better to start slowly and build up.
  • No movement or exercise should cause pain.
  • If you are being treated for cellulitis/infection do not exercise until you feel better.
  • If you notice your swelling increases after an activity you may be overdoing it – try doing a little less for a while and then gradually build up activity.

 

There is more information in the LSN’s fact sheet ‘Recreational Exercise and Movement with Lymphoedema’, which is free to members.

Managing your weight

Studies have shown that one of the most effective ways to reduce swelling is to maintain a normal healthy weight. If you are overweight talk to your doctor or practice nurse about the best ways for you to address this and discuss the support they can give to help you. If your weight is within normal limits then try and maintain this and make sure to eat a healthy and balanced diet.

There is more information in the LSN’s fact sheet ‘Maintaining a Healthy Weight’, which is free to members.

 

Compression

Once your lymphoedema has been assessed you may well be prescribed some sort of compression garment to reduce and contain the swelling. Please do not be tempted to buy your own compression – an appropriately trained therapist first needs to assess/measure you to discuss the best style, type and strength of the compression garment required.

There is more information in the LSN’s fact sheet ‘The use of Compression Garments in Lymphoedema’, which is free to members.

‘The LSN has been invaluable help to me. Following my diagnosis I had very little information to go on. On joining the LSN I requested the relevant fact sheets and saw the light at the end of the tunnel.’ LSN Member 2016

How you feel about your lymphoedema

It is perfectly ‘normal’ to feel anxious or worried about what is happening, you may be distressed by how your body is changing or the way it looks, you may be frightened about the future and what it holds, or you may be completely calm and positive and be looking forward to getting some treatment, everyone with lymphoedema is different and feels differently about their condition. The LSN speaks to hundreds of people just like you every year. However you are feeling, it is okay to feel that way, but if you would like to talk to someone who may be able to provide you with some further information or support please do not hesitate to call us on 020 7351 4480.

This information has been produced and verified by accepted experts in their field and reflects current practice. The information has been designed to assist you in managing your condition and is not intended to replace advice you may receive from your healthcare practitioner. If you or your healthcare practitioner would like further information, to ask any questions about this information, to provide us with any feedback or to find out what research underpins it, please contact the Lymphoedema Support Network on 020 7351 4480.

This information has been produced from various existing LSN resources and has been checked for accuracy by LSN Nurse Advisor, Denise Hardy. It was last reviewed in October 2022 and  will be reviewed in October 2025.