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Staff member
This article is taken from the Summer 2003 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.


The misunderstood condition

by Pip Sharpe

What is lipoedema?
Allan and Hines first described Lipoedema in 1940 as a bilateral enlargement of the legs thought to be due to abnormal deposition of subcutaneous fat and the accumulation of fluid in the lower legs. They also classified it as 'painful fat syndrome'. It was not until 1949 that Wold et al would define diagnostic criteria for lipoedema that included bilateral, symmetrical leg swelling excluding the feet, which remain normal in size; minimal pitting oedema; pain and bruising in the swollen areas and large legs, thighs and buttocks despite dieting. In addition, the condition occurs almost exclusively in females and is normally first noticed at puberty or pregnancy.
Unfortunately, lipoedema is often not diagnosed and can be mistaken for several conditions including lymphoedema or obesity. Lipoedema can manifest with both physical and psychological problems including: discomfort at sites of swelling, spontaneous bruising and tenderness as well as a hatred for the disproportionally large legs while Western culture values the perception of slender legs.

What is lymphoedema?
The function of the lymphatics is to clear protein and water from the tissues. Fluid accumulation can be due to the absence, damage to, or obstruction of lymphatic vessels affecting the transporting capacity of the system.When the fluid formation is increased to a point that it overwhelms the capacity of the lymphatics absorptive system, oedema (swelling) occurs.
Lymphoedema of the legs tends to occur after puberty (but can occur at any age) with foot and ankle swelling.

It can affect both males and females. In the early stages of chronic (long-term) lymphoedema, the swelling can be reversible. Pitting of the skin is invariably present. Swelling can disappear after a night's rest, although not in established lymphoedema. Yet, if this swelling continues and is left untreated, it will continue to increase and the skin may become hardened, dry and scaly in appearance.

The increase in weight can cause joint problems, leading to a reduction in mobility and pain occurring in the affected limbs. As a result of the swelling and altered local immunity, cellulitis may occur. This manifests as hot, red skin that can break down because of blistering. The individual may become systemically unwell and experience flu-like symptoms. A prescribed course of antibiotics as soon as possible is required. If very unwell, the patient may require intravenous antibiotics in hospital.Multiple episodes of cellulitis can occur leading to treatment using long term prophylactic antibiotics.

How does lipoedema differ from lymphoedema?
To further explain lipoedema, it is necessary to compare this condition to lymphoedema. Lymphoedema is usually asymmetrical and can be either acquired (through injury to the limb or tumours) or congenital (hereditary). Lipoedema on the other hand, is seen as the symmetrical enlargement of both lower limbs, beginning at the ankle and extending proximally as far as the waist and appears to be hereditary. The table below further highlights the obvious differences.

To see the table properly please visit the website:


CharacteristicLipoedemaLymphoedemaSex females only males & females Age of onset puberty usually pubertal Family history around 40% of cases around 20% of cases (Harwood et al 1996) (Harwood et al 1996)Obesity yes variableSymmetry usually symmetricalalways symmetricalSwollen feet never usuallySkin consistency normal or thinner thicker & firmerPitting of skin usually absent always pitsEasy bruising often no increase Pain & discomfort often infrequentTenderness often infrequentEffect of dieting little effect on legs even loss from trunk & legs
The sparing of the feet causes a 'bracelet effect' at the ankle. Unlike lymphoedema, lipoedema does not appear to cause skin thickening. The individual will often complain of extreme aching and tenderness within the affected limbs, especially around the knees due to the extra weight. Pain may be much more of a feature than with lymphoedema.

How does lipoedema differ from obesity?
Body fat is made up of adipose tissue that is important as a store of energy. This fat can be mobilised quickly in response to metabolic demands. Obesity can be thought of as excess body fat. This can cause health problems including; high blood pressure and diabetes. If an obese individual attempts to diet, the weight will be lost uniformly from all over the body. Yet, an individual with lipoedema will lose weight preferentially from upper body and face. The reason for this at present is not known.

What causes the fluid retention to occur in lipoedema?
Whilst fluid retention appears to occur to a significant degree with lymphoedema, it has been recognised with lipoedema that in the early stages the oedema may be minimal but over time this will increase and an individual may present with lipoedema and lymphoedema. So both conditions may coexist.

Dieting and Exercise
This condition is often misdiagnosed and treatment can be haphazard. Individuals are advised to diet and lose the excess weight. This can in the short-term, help if the individual is obese. If the individual is not overweight and just disproportionally large from the waist down, this can potentially lead to a state of anorexia. The individual will attempt to lose weight, unfortunately, due to the nature of the condition, the individual will remain large from the waist down, whilst losing the weight from the upper body and face. This can exacerbate the disproportionate nature of the condition, leading to increased feelings of depression and disturbed body image.

Exercise is essential not just for 'burning fat' but also for enhancing any 'sluggish' lymph drainage, which likely co-exists. The best exercise to undertake is water aerobics. This will support the joints whilst allowing resistance to occur which will increase your heart rate. If this is not appropriate then walking can be of benefit either on a treadmill or outside. However, this may put added stress onto already painful knee joints.

Alternatively, diuretics are prescribed, in the belief that the swelling is caused by fluid retention, but very little, if any, benefit will be gained.

Perhaps the most successful treatment currently available is the use of surgical support stockings in combination with movement and exercise. These stockings, whilst expensive, can usually be obtained via the GP. The benefits of stockings include; helping redefine the shape of the limb and encouraging improved venous and lymphatic drainage helping to prevent aching, providing exercise is pursued.

Diagnostic Tests
Lymphoscintigraphy can distinguish swelling due to lymphoedema from lipoedema. The test involves injecting a very small amount of radioactive material between the toes of the affected limbs. The radioactive tracer is monitored as it is taken up by the lymph glands. If the individual has lymphoedema, this test usually demonstrates that the lymphatic collecting channels are abnormal. In lipoedema, lymph drainage routes are patent and functional.

Liposuction is a commonly undertaken procedure for excess fat (and even in certain cases of lymphoedema). It is best used for localised areas and not over large regions such as a limb. The likelihood of achieving an even effect (liposculpture) is small and cosmetically there may be no improvement.

Current Research
Treatment is still largely unavailable to many individuals with lipoedema, through a lack of understanding as to the causes of the condition. Research continues to play an important part in helping to find a cause.

The Lipoedema Study Group is undertaking one such study at St George's Hospital Medical School in London. Through the use of blood samples given by individuals with lipoedema, this study aims to identify genes that can predispose an individual to develop lipoedema within their lifetime. Currently this study is in the early stages, but it is anticipated over the next few years enough families with one or more affected relatives will be located to provide the necessary blood samples for genetic analysis. Individuals can either be referred to the study by their GP or can contact Miss Pip Sharpe, Research Nurse.

It is hoped that the study will help to bring further awareness of lipoedema and help individuals with the condition to cope better both physically and psychologically with its effects.

Conclusion In conclusion, it has been shown how hard it is to make an accurate diagnosis of lipoedema. Often, individuals will present with a combination of signs and symptoms, which may overlap with lymphoedema, making a straightforward diagnosis very difficult. The key factor to come out of the research so far has been that individuals with a diagnosis of lipoedema need to have both physical and psychological support to help them overcome the mental anguish, which accompanies the abnormally large limbs. These individuals need to know that they are not 'going mad' and that they are not primarily obese, which is very often definitely not the case.
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I have lipoedema (sometimes also spelt lipodema) of the lower legs. In my case it's painful, with some days worse than others.

My lower legs are ridiculously out of proportion, with the area below my knee bulging out in front. My right calf is 21" round and my left is 20". The skin is thin and cuts and bruises easily, plus my veins are suffering and I am developing varicous veins at the ripe old age of 29.

My GP didn't know anything about lipoedema, in fact I had been misdiagnosed as having lymphoedema in my teens. Earlier this year I was visited by a friend of my father who suffers from lymphoedema and she told me that there is a special clinic for lympho/lipo sufferers run by our local cancer hospice (this is because lympho often occurs after cancer, especially where the lymph glands have been removed to stop the cancer spreading). My GP referred me to this clinic and now I have someone who understands to talk to.

If anyone else on here suffers from lipo and would like to talk, please let me know