What is lipedema?

Lipedema is a condition that is caused by abnormal fat cells disproportionately located in the lower body, and sometimes in the arms, that almost exclusively affects women.  The fat is abnormally increased in the hips and legs but significantly less in the abdomen – nearly the opposite of obesity.  The size, location and shape of this abnormal fat results in a constellation of symptoms resulting in chronic pain, impaired mobility and early death. Current estimates are that 1 out of 9 women have lipedema.  That means 11% of adult women, or approximately 14 million women, have lipedema in the United States alone.

Lipedema

Fat in lower body disproportionate to trunk and upper body

Obesity

Fat in lower legs less than trunk and upper body

Signs and symptoms of LIpedema:

The fat cells (adipocytes) only in the hips/buttocks and legs (and sometimes in the arms) increase in number and size – becoming 8-10 times their normal size.  To support this extra size and weight, the connective tissue between the muscles and the skin gradually becomes thicker, harder and bigger adding even more weight and size to the body. All fat cells in the body are sensitive to estrogen.  As a result, the condition becomes more active after a change in estrogen such as during menarche, after a pregnancy and even at menopause; but, for unknown reasons it affects the fat in the extremities more than the abdomen.

Lipedema patients also report the onset of chronic, continuous pain in the affected limbs that can sometimes be severe.  This pain may occur with something minor such as a toddler sitting on the lap, a cat walking across the leg or a slight bump into a corner of wall – even causing an unexpected bruise. As the disorder progresses, pain can occur with light touch, walking, standing and even at rest – to the point that the pain never goes away. For this reason, some people have called this “Painful Fat Syndrome”.

The disorder progresses with time despite valiant and even extreme measures to lose weight, and for reasons still unknown, the abnormal fat cells remain that way indefinitely.  Many women with lipedema report being told by their doctor to simply “eat less and exercise more” to treat the fat in the hips and legs.  Some patients have faithfully tried in excess of 10 to 20 different diets, even becoming an inpatient at a weight loss facility, in order to shrink the fat – only to end up gaining more weight. 

Most women with lipedema tend to be quite limber.  Their joints are more mobile and extend more.  Obesity prevents such flexibility.  Patients with lipedema can reach behind their backs and often touch the floor in ways that many other women cannot. 

Women with lipedema rarely have any water swelling in the legs (lymphedema).  However the swelling and disproportionate size of their legs are very commonly misdiagnosed as lymphedema.  “Water pills” do not work and the swelling/increased size does not change significantly whether standing, sitting or lying down.  This is because the “swelling” is due to persistent, abnormal fat cells rather than water/fluid in the legs.

Women with lipedema report that their extremities feel cool to touch all the time and they become tired very easily.  This is not due to being “out of shape” – in fact lipedema patients are usually quite active, healthy and exercise regularly.  Instead as the condition progresses, the added tissue and significant weight in the legs causes fatigue and lack of energy. In addition, the added weight and altered bony alignment causes knee and hip joints to wear out earlier in life, restricting mobility and exposing the woman to other serious conditions.