Your questions answered
These questions have been answered using information 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 health care practitioner. If you, or your health care 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.
"Will I have lymphoedema for ever or will it eventually go away?"
Lymphoedema cannot be cured but, with appropriate treatment, its major symptoms, namely swelling and the risk of infection (cellulitis) can be improved and controlled. Skin and underlying tissues will also improve, function/mobility of the limb should increase and the psychological effects will be minimised.
"What treatment is there?"
Depending on the degree of your swelling, treatment programmes available from lymphoedema practitioners may include skin care, Manual Lymphatic Drainage (MLD) or Simple Lymphatic drainage (SLD) - specific kinds of gentle massage - exercise advice, and compression of the swollen limb in the form of support garments such as stockings or sleeves. Sometimes a special kind of bandaging called Multi-layer lymphoedema bandaging may be used prior to fitting a sleeve or stocking. Used in combination, these measures are designed to improve lymph drainage, reduce swelling and limit infection. Psychological support to help you cope with this distressing condition will also be offered.
"Do water tablets (diuretics) help lymphoedema?"
Diuretics or water tablets are generally not recommended for lymphoedema. However, they may be used when swelling is severe/complicated or in circumstances where there may be more than one cause for the swelling (e.g. heart/renal problems). Never stop taking prescribed medication without first discussing it with your General Practitioner. The LSN produces a fact sheet on the use of diuretics in lymphoedema which is free to members.
"Is there any medication which I can take to help my lymphoedema?"
At the moment there is no specific medication that will ‘cure’ or minimise the condition – however certain drugs are sometimes introduced to address the symptoms that may arise as a result of having it e.g. antibiotics for an infection. Research, however, is ever on-going. For example, work is currently under way to measure the pumping action of the lymphatics. This could eventually enable testing of drug therapies for improving lymphatic function, but this is some way off.
"What is Manual Lymphatic Drainage (MLD)?"
MLD is a gentle and specialised form of massage, carried out by fully trained practitioners. It consists of very light, rhythmical pumping hand movements to stretch the skin and to encourage lymphatic drainage. The aim of MLD is to stimulate and improve normal drainage in healthy areas of the body so that fluid can drain away from more swollen/congested areas much more easily. MLD can also help reduce pain/discomfort as well as improve the hard, firm tissues that can be so problematic. Although some NHS clinics are able to offer MLD as part of treatment, many have strict guidelines as to who they are able to treat with MLD, so some people have (or choose) to pay for this element of their treatment themselves. If you would like to know where your closest qualified MLD therapist is, then contact MLDuk or phone the LSN help line on 020 7351 4480. The LSN also produces a fact sheet about MLD which is free to members.
"Why do I have to wear compression garments and how do I get them on prescription?"
Compression garments are an essential component of your treatment which will help to maintain and/or improve your lymphoedema. They help to limit the amount of fluid that builds up in your limb, provide your muscles with a firm resistance to work against (which promotes fluid drainage), encourage fluid to move towards the body (where it may drain away more easily), provide support for stretched/inelastic skin and help to soften tissues that may have become hard/firm. It is very important that your garments fit properly and are suitable for the amount, extent and shape of the swelling that you have. An individual assessment by a trained practitioner is essential if the correct style, pressure and size of garment is to be selected and once measurements have been taken, s/he will organise a prescription (usually through your GP) Some patients are exempt from prescription charges (e.g. if your lymphoedema is due to cancer or cancer treatment). An exemption form is available through your GP or pharmacy. If you are not exempt, prescription charges will be implemented per item. The LSN produces a fact sheet on compression garments which is free to members.
"Where can I find my nearest lymphoedema practitioner/specialist?"
There are lymphoedema practitioners throughout the UK, although some areas lack appropriate NHS services. If you would like to discuss where your local provider is then ring the LSN help line on 020 7351 4480. They can also help you pursue treatment if it is not offered locally by providing help/advice about who to approach for funding.
"How can I get my GP to take my condition seriously?"
Unfortunately, many people are still told that nothing can be done to help lymphoedema. Most doctors are sceptical and negative about any treatment for lymphoedema and are often unaware of where to refer their patients for advice. In the first instance try to gather as much information as possible about the condition (e.g. obtain the LSN fact/information sheets and where your local clinic is situated) and then, politely, share them with your GP. If you continue to have difficulties with this or you do not have an NHS practitioner in your area, then the LSN can help further with their advocacy pack (guidance and notes which may help you to negotiate the steps in obtaining funding for treatment). This pack is free to LSN members. The LSN has commissioned a learning module in association with the Royal College of General Practitioners. You can find out more here.
"What is the treatment for cellulitis?"
Cellulitis is a complication of lymphoedema and one that should be avoided. Prevention is vital – as is the prompt management of infection if it occurs. For information on this please see the About cellulitis section of this website. The LSN has also produced two fact sheets, ‘What is cellulitis?’ and ‘The management of cellulitis’ which are free to members.
"Is it safe for me to go to the gym if I have lymphoedema?"
Exercise usually has a very positive impact on lymphoedema and is encouraged because muscle activity helps to promote lymphatic drainage. However, it is important that you build up any activities slowly and sensibly. Always wear your compression garments when you are exercising to support your limb (you do not have to wear your garment when swimming as the water provides resistance against the skin/tissues). Take notice of how your limb responds to the exercise – if it swells, aches, feels hotter or takes longer to recover than the other limbs afterwards, then the programme may need to be adapted or reduced. Your lymphoedema practitioner will offer set exercises and general advice about recreational exercise and The LSN produces a fact sheet on exercise which is free to members.
"Is it safe to fly when I have lymphoedema?"
There is no actual research that proves flying makes lymphoedema worse. However, anecdotal evidence does lead us to believe that it can - particularly during long haul flights associated with prolonged periods of inactivity, low cabin air pressure and poor air quality. Patients are advised to wear their compression garments (if they have them), to try and keep the limb moving (in-flight exercises are helpful) and to drink plenty of water. The LSN produces a fact sheet on holidays and travel which is free to members.
"Where can I get shoes to fit?"
Finding shoes which fit when you have a swollen foot/leg can be very difficult and often frustrating and upsetting. There are a few specialised companies which produce extra wide fitting shoes. Clarks shoes do an odd size feet service and Cosyfeet offer mixed sizes in slippers. The LSN produces a fact sheet on swollen feet and legs that also gives information on where you can obtain suitable footwear. This is free to members.
"What is the difference between lymphoedema and lipoedema?"
Lymphoedema and Lipoedema are very different conditions although there are connections between them and many people live with both. Lymphoedema relates to a build-up of lymph (protein rich) fluid in the tissues as a result of the lymphatic system being damaged, overloaded or blocked. It can affect any part of the body and is seen in people of all ages and any sex.
Lipoedema is an abnormal deposit of fat cells in the tissues which usually results in symmetrical swelling of the lower limbs. It is seen in women only and tends to run in families. Most patients are told they are overweight, but dieting has very little impact on reducing the swelling. If left untreated, lipoedema will begin to obstruct lymphatic vessels and lead to a lipo-lymphoedema with all the added signs and symptoms of lymphoedema. You can read more about both conditions in other sections of this web site.
"Is lymphoedema life-threatening?"
Lymphoedema is classed as a long-term or chronic condition and is therefore not a life-threatening condition.
However, one complication of lymphoedema is an infection called Cellulitis (usually caused through a break in the skin of the lymphoedematous limb). Cellulitis can, on very rare occasions, be life-threatening if it is not treated promptly. It is very rare because most patients are warned about such infections and steps are generally taken to prevent it or treat it as soon as possible. Generally it is caught early - but if left untreated, patients can become very poorly indeed and will require hospitalisation.
These questions have been answered by LSN Nurse Advisor Denise Hardy
Reviewed March 2015
Next planned review March 2017