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Lipedema: A Commonly Misdiagnosed but Real Condition

For months now, you’ve been hitting the gym every day, eating right and getting plenty of rest. You’re seeing the gains you’re making in your upper body, but what’s going on from the waist down?  Why do your legs look like tree trunks?

Even though you’ve been doing everything by the book, it may be something totally out of your control known as lipedema. Not to be confused with lymphedema, lipedema can be a painful condition that causes swelling in your legs.

Here are four things to know about lipedema, including information on symptoms and treatment options.

Lipedema isn’t caused by being overweight

If you’re like most people, you probably haven’t heard of lipedema. In fact, many health care professionals are unaware of it as well. It is a commonly underrecognized and misunderstood disorder.

“Lipedema may be mistaken for lymphedema, weight gain, and obesity,” said Aaron Mason, MD, FACS, FAAP, an aesthetic and reconstructive surgeon with Banner – University Medicine North. “Diet and exercise are generally not effective in preventing nor treating it.”

Lipedema is a chronic and progressive medical condition, meaning it can get worse over time. It causes fat below the surface of your skin to grow larger than usual, especially in the lower part of your body. You may notice your legs, thighs and butt are much larger than the rest of your body.

“It can give the appearance that two different bodies have been put together,” Dr. Mason said. “You have a typical upper body and arms but a lower body that is larger in proportion.”

The exact causes of lipedema are unknown. The condition occurs almost exclusively in women, about 1 in 9 women, and it usually starts or worsens during puberty, pregnancy, or menopause.

Lipedema is not the same as lymphedema

While both conditions have symptoms of swelling, lipedema is not lymphedema.

Lymphedema has multiple causes and usually affects only one side of the body and includes the hands and feet in the affected body part. It tends to cycle, causing your legs or arms to be smaller in the morning and larger as the day progresses.

On the other hand, lipedema tends to affect both legs simultaneously, spares the hands and feet, and does not cycle, meaning it stays the same throughout the day. It can be accompanied with an unusual texture within the fat that feels like rice or peas beneath the skin. You may also experience fatigue, easy bruising or muscle pain.

“Over time, the fat deposits become worse, and patients can experience discomfort and pain, which can range from none to severe,” Dr. Mason said. “The frequency can be intermittent or constant, and some people can have difficulty walking or standing. It can also have a psychological impact with some experiencing depression. Low self-esteem can lead to social isolation.”

Lipedema occurs in stages

Often lipedema gets worse as time goes on, but some people have stable lipedema. “In the early stages of the condition, you may not notice many changes,” Dr. Mason said. “As it progresses, patients notice more of the recognized symptoms.”

Currently, there are four identified stages of lipedema:

  • Stage 1 – Mild: Smooth skin appears dimpled and uneven as fat deposition develops on your thighs and around your knees
  • Stage 2 – Moderate: Uneven skin with large mounds of fat tissue develop throughout the legs
  • Stage 3 – Severe: Legs have large growths of fat tissue, causing folds of fat to accumulate along knees and thighs
  • Stage 4 – Advanced: Condition progresses to include lipedema and lymphedema (or lipolymphedema), where large folds of skin and fat tissue hang from the body, including the arms, midsection and legs.

If you have lipedema, you aren’t alone

While there is no cure for lipedema, there are treatment options available to address your symptoms and maintain your quality of life. After a correct diagnosis, it’s important to talk to your health care provider to determine the most effective treatment plan.

Treatment options for lipedema include:

  • Compression therapy: Bandages are used to squeeze (compress) the affected areas
  • Physical and occupational therapy: Manual lymphatic drainage therapy is used to improve your mobility and move fluids from the affected area
  • Changes to diet: Dietary changes to help reduce inflammation and manage symptoms
  • Strength and conditioning exercises: Water exercise is particularly helpful because it is low impact and helps increase mobility and improve circulation
  • Counseling: Talking to a licensed behavioral health specialist can help cope with the impact of the disease
  • Liposuction: Specialized liposuction seeks to spare injury to lymphatic channels and remove the diseased lipedema fat

“While liposuction does not cure lipedema, in select patients it may improve mobility, improve the quality of life and reduce any pain associated with the condition,” Dr. Mason said.

Get help

Lipedema is often not recognized or misdiagnosed. If you suspect it’s the cause of your swelling, talk to a vascular surgeon or a plastic surgeon who specializes in lipedema.

“An early and accurate diagnosis is essential to appropriate treatment. It is important to generate appropriate awareness and identify better diagnostic and treatment options for lipedema so affected women can obtain the care that they need,” Dr. Mason said. “Early diagnosis can slow the progression of the condition and improve overall health.”

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