The Mysterious Condition That Causes Painful Fat in Your Legs and Arms
Often mistaken for obesity, lipedema primarily affects women. Researchers are working to understand its biology—and develop better ways to identify it.
For years, people with lipedema have struggled to find an explanation for the disproportionate buildup of fat in their legs, often accompanied by pain, tenderness, and easy bruising. Many were misdiagnosed or simply ignored.
Lipedema, a chronic medical condition characterized by symmetrical fat buildup primarily in the legs, was first described in the 1940s. But more than 80 years later, the disease is just beginning to receive broader recognition.
In recent years, patient advocacy has helped spur growing interest in the field. Estimates suggest that lipedema may affect up to 12 percent of women, though the true prevalence is unknown. The World Health Organization introduced a lipedema-specific disease code in 2019, as part of an international classification that took effect in 2022. In the United States, lipedema-specific diagnosis codes aren’t expected to go into effect until October 2027.
As researchers race to keep up with patient demand, many people with symptoms use social media to share their stories and crowdsource information. So, what do we know about the underlying biology of lipedema and how it manifests in the body? Experts discuss diagnosis, treatment, and the big questions left unanswered.
At the most basic level, lipedema involves a disproportionate buildup of fat tissue beneath the skin, primarily in the legs and sometimes the arms and lower trunk. Patients, who are predominantly women, often experience pain, tenderness, and bruising in the swollen regions. While considered progressive, the disease does not always worsen with time, says Vincenza Cifarelli, an assistant professor at Saint Louis University School of Medicine.
Because of its appearance, lipedema is often confused with diseases like lymphedema and obesity. Lymphedema involves swelling caused by impaired drainage of lymph, the fluid that circulates through the lymphatic system. Lipedema typically affects both sides of the body symmetrically, with disproportionate fat buildup that usually spares the hands and feet. Lipedema can also coexist with obesity, further complicating diagnosis.
Researchers agree that there isn’t a single cause for lipedema. Although the disease tends to run in families, researchers have not yet identified any genes as responsible. Other physiological factors also play a role. Vascular dysfunction, including fragile, leaky vessels, seems to contribute to the characteristic swelling of lipedema. Notably, symptoms often begin to appear during hormonal shifts, like puberty or menopause.
Limited research has left important gaps in understanding lipedema—and in the care available to patients. Until recently, most criteria for lipedema diagnosis and care were based on outdated information that didn’t account for the patient experience.
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“There were all these women saying, ‘I'm suffering from uncontrollable fat expansion in my legs, pain, easy bruising, and I don't know why,’” says Rachelle Crescenzi, an associate professor of radiology and medical imaging at the University of Virginia. “And there was no place for that group to go.”
For people seeking answers, social media has become a place to share experiences and find information. But that information isn’t always reliable. Crescenzi warns that growing attention to lipedema can also create opportunities to promote untested lotions and other alleged treatments.
“We know that there’s going to be bad actors that pick up on the hype about this disease,” Crescenzi says, “and we think that could be a huge barrier to people actually getting the care that they need.”
Even as awareness grows, finding a clinician who can reliably identify lipedema remains a challenge.
“It’s tough to diagnose,” says Thomas Wright, the medical director of Laser, Lipo and Vein Center and a liposuction specialist who regularly sees patients with signs of lipedema. With no objective diagnostic test—no definitive blood test or MRI scan—Wright says he relies on a clinical exam that considers a constellation of symptoms, including heaviness and tenderness, swelling, and disproportionate accumulations of fat. “It can be devastating in terms of affecting mobility and quality of life,” he says.
Though there is no cure for lipedema, certain treatments can be effective. Some clinicians recommend eating an anti-inflammatory diet, staying active, and wearing compression garments for day-to-day management, although the research is limited. In more severe cases, liposuction may be necessary. Lipedema is “not just lack of willpower to lose weight,” Cifarelli says. “This is an important disease.”
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Patient advocacy and research funding from organizations such as the Lipedema Foundation are helping scientists investigate some of the condition’s unanswered questions.
Crescenzi, who recently received funding from the National Institutes of Health to study lipedema and other lymphatic diseases, is developing MRI techniques better to understand sodium levels and the structure of affected tissue. Her team has found that MRI-measured sodium and fat levels differ between the lower limbs of patients with lipedema and those of BMI-matched participants without the condition. Researchers are now investigating whether such measurements could eventually help doctors diagnose lipedema more reliably.
“The fact that the majority of the original research was published in the last five years is to me a really strong indicator of where the field is going,” Crescenzi says. She’s hopeful that better measurements will soon improve diagnostics and patient outcomes. “I think that could be on the horizon for the next ten years.”
