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 or to find out what research underpins it, please contact the Lymphoedema Support Network on 020 7351 4480.
When you are told that you are living with a long-term condition it is understandably frightening. 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 that we are most commonly asked on the ‘Your questions answered’ section of this website.
We hope by now that you have been referred to a lymphoedema clinic – if you have 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 appointment at the lymphoedema clinic to start making a difference to your wellbeing.
In the areas of your body that are swollen, the skin can become overstretched and fragile, 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 (add link). It is really important to try and prevent this happening and one way of doing this is to improve the condition of your skin. The LSN suggests the following 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.
• 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.
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.
You can find out more about skin care in lymphoedema by contacting the LSN on 020 7351 4480
Lymphorrhoea: This is the term used to describe lymph fluid leaking through the skin. This can happen if the area swells very quickly, if the skin is fragile and thin or if there are breaks in the skin. This leakage can be mild or very severe but needs to be managed by a lymphoedema specialist.
Regular exercise helps to control swelling, keeps joints flexible, improves posture and balance, helps to control weight and can induce a sense of wellbeing.
What sort of exercise 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 more effective 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.
For more information about exercise in lymphoedema contact the LSN office on 020 7351 4480
Managing your weight
Studies have shown that one of the most effective ways to reduce swelling is to get, and keep, your weight within normal limits. If you are overweight talk to your doctor or practice nurse about the best ways for you to lose weight and the support they can give you. If your weight is within normal limits then make sure to eat a healthy and balanced diet.
For more information about healthy eating and lymphoedema contact the LSN office on 020 7351 4480
Once your lymphoedema has been assessed you may well be prescribed some sort of compression to reduce and contain the swelling. Please do not be tempted to buy your own compression as it is important that someone who is appropriately trained measures you and decides how strong the compression should be.
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. 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 from various existing LSN resources and has been checked for accuracy by LSN Nurse Advisor Denise Hardy in November 2016. It will be reviewed in November 2018.