Lipedema: Not Just Fatty Legs

Lipedema: Not Just Fatty Legs

Having worked in the hospital for many years, I have encountered countless female patients who reported that they suffer from “lymphedema” – an errant diagnosis given to them by health care professionals to explain their markedly swollen legs.  Sure, some of them may have had legitimate lymphedema, but it tends to be more commonly seen in the setting of a post-surgical complication, such as a lymph node dissection associated with breast cancer surgery.  Most of them, however, actually have lipedema, an inflammatory disorder affecting fat tissue.

Most doctors don’t know anything about lipedema.  In fact, I admit that I was guilty of the same.  I recognized that the frequent complaint of “lymphedema” was overstated, and I suspected that the often-seen large legs were specifically attributed to obesity or a fluid-overloaded state.  However, I was never educated on lipedema throughout all of medical school and residency, eventually encountering the concept during my obesity medicine certification.

What is lipedema?

Lipedema occurs almost exclusively in women and is estimated to affect 11% of women.  It is always bilateral, meaning that it affects both sides of the body equally, most commonly in the legs but can also include the arms.  Unlike lymphedema, the swelling seen with lipedema is non-pitting – when you press on the swollen area, there’s no residual dimpling effect.


Lipedema appears to have the characteristic of chronic inflammation, appearing quite different from regular adipose (fat) tissue. Whereas regular body fat tends to appear yellow and have a uniformly blob-like consistency, the fat in lipedema appears red due to inflammation and fibrosis, with marked nodularity compared to regular fat.

Onset of lipedema is strongly associated with periods of significant hormonal flux, such as puberty, pregnancy, and peri-menopause.  This pattern, along with its exclusivity among women suggests a critical role of estrogen in its appearance.  There is likely also a genetic component (ref).

Lipedema is notorious for being resistant to conventional weight-loss methods such as calorie restriction and exercise.  In fact, women with lipedema often are criticized wrongly for not trying hard enough to lose weight, when in reality the inflammation typical of lipedema appears to be responsible for “trapping” of fat that essentially makes it inaccessible to the usual methods of fat loss.

How does one diagnose lipedema?

Lipedema is notoriously mis-diagnosed as lymphedema, partly due to the lack of definitive criteria for diagnosis.  Here are proposed criteria:

  • Occurs almost exclusively in women
  • Strongly correlates with periods of hormonal flux – puberty, pregnancy, peri-menopause
  • Disproportionate distribution of fatty tissue – typically in hips, buttocks, legs, and upper arms. (5 patterns – see image)
  • Easy bruising – from minimal to no trauma
  • Pain and/or heightened sensitivity – light pressure may be a trigger for discomfort
  • Ineffective weight loss attempts – diet/exercise regimens not successful; bariatric surgery has limited effects on fat loss in the lower body
  • Distinctive tissue changes – nodular, dense tissue
  • Cuffing at the ankles – sudden transition from abnormal to normal tissue

Clues/common complaints with lipedema

  • Unexplained weight gain that was resistant to diet and exercise
  • Disproportionate fat distribution, disproportionate fat gain/loss
  • Painful legs or painful fat – from normal activities like BP checks, massage, any touching
  • Swelling of the legs, feeling of heaviness
  • Hands and feet are usually spared
  • Shame about appearance of large legs
  • Patients often accused by medical professionals of lying, told to “try harder” or feel dismissed; They are often not taken seriously.


Management of lipedema

Lipedema is a frustrating condition and can be distressing to those affected by it.  Consequences of poorly managed lipedema include:

  • Impaired mobility
  • Poor body image
  • Chronic pain
  • Poor quality of life

Management of lipedema often incorporates non-traditional methods, with physical treatments such as massage (Europe is ahead of the game).  There has also been a focus on psychosocial support.

Surgical intervention includes lymphatic microsurgery and liposuction, although these probably shouldn’t be the 1st step.  While surgery can definitively reduce the fat burden of lipedema, a treatment approach promoting an effective lifestyle intervention prior to surgery appears to be the most successful approach.


Ketogenic Diet for Lipedema

The most promising lifestyle intervention for management of lipedema is a ketogenic diet.  Studies comparing a high-fat ketogenic diet compared to low-calorie (ref) or moderate-fat, moderate-carbohydrate (ref) diet show significant improvement in body fat, body weight, and limb circumference, along with favorable changes in metabolic markers such as glucose, insulin, and lipids.

A case study highlights the impact of a ketogenic diet on one woman’s battle with lipedema, allowing her to drop 41 kg of weight over 18 months, with significant reduction in body measurements and metabolic markers.

While there are many possible mechanisms to account for the success of the ketogenic diet in lipedema, the most apparent one is that of decreasing inflammation.  Inflammation is certainly a relevant component of lipedema, and more research is needed to understand the condition in greater detail.

A ketogenic diet approach can reduce/eliminate multiple symptoms, may reduce the need for other management strategies, and may reduce suffering.


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