Lipedema

Lipedema: When Traditional Obesity Protocols are Ineffective

September 15, 2021

What is Lipedema?

Despite our advancing knowledge of the causes of obesity and its various effects on the body, one condition has been tremendously overlooked and underdiagnosed - lipedema. Also known as the “painful fat disease,” lipedema is a subcutaneous adipose tissue (SAT) disease that affects up to 11% and possibly more of the female population.

What makes lipedema fat unique is that it cannot be lost by usual measures, including diet, exercise, or bariatric surgery. A lack of awareness and understanding in the medical community contributes to the disease being neglected, leaving patients with no answers and continued pain. This article seeks to help to increase knowledge and awareness about lipedema.

Lipedema can be diagnosed and treated, relieving patients of the painful symptoms that diet and exercise alone cannot treat. Although the exact causes of lipedema are unknown, the treatments are effective, and patients can vastly improve their quality of life.

Identifying the Signs and Symptoms of Lipedema

 Fat, by definition, is a loose connective tissue (LCT) and lipedema is a LCT disease. Patients who suffer from lipedema will have symptoms directly or indirectly related to their LCT. These symptoms include:

Edema

  • Swelling is caused by excess fluid trapped in your body’s tissues. Lipedema tissue has small vessel disease causing more fluid to enter tissue, causing inflammation that slows down the lymphatic system and creates a fluid buildup in the legs, buttocks, and hips. The capillaries just under the surface of your skin are wider in lipedema tissue and can be seen as little red marks on your skin if you look closely enough.

Fibrosis

  • The overgrowth, hardening, and scarring of LCT are attributed to excess deposition of extracellular matrix (ECM) components, including fibers like collagen and elastin and a thick gel made of proteins, sugars, water, and salt) that enlarges and disorganizes the ECM.

LCT Masses

  • Lipedema fat has small nodules in it the size of a rice grain or frozen peas. These same nodules can occur near lymph nodes, especially at the elbow and inner knee, suggesting the excess fat disturbs the lymphatic system.

Heavy LCT

  • SAT tissue should be light and fluffy, not heavy. When the tissue becomes heavy with fluid, as in lipedema, it stretches away from the body, forming a fat lobe. These lobes are dangerous as they can progress to lymphedema.

Peripheral Muscle Strength

  • Peripheral muscle strength loss is probably due to a decrease in the strength of the deep connective tissue (fascia) overlying muscle. LCT surrounds the muscle. When the fibers in the ECM become damaged and disorganized, this also affects muscle function.

Cuff of LCT

  • A cuff of LCT appearing at your wrists and ankles. In Stage 1, the skin is smooth despite an increase in SAT tissue that can extend all the way down to the ankle, forming a cuff despite a normal appearing foot.

Decreased Skin Elasticity

  • There is less of a bounce back to the tissue, potentially accompanied by stretch marks. The skin will start to develop protruding hills and fibrous valleys.

Hypermobile Joints

  • You may notice a significant increase in joint hypermobility, such as with hypermobile Ehlers Danlos Syndrome. Hypermobility associated with lipedema has been reported to contribute to joint damage.

Mobility Issues

  • Mobility issues as a result of the discomfort, pain, and heaviness brought on by lipedema.

Disproportion

  • Overall disproportion, as lipedema progresses, the body will form a “pear shape” from the increased LCT in the lower body.

Hypothermia

  • The skin in the lower legs, upper arms, feet, toes, and sometimes hands can feel colder because of the lack of circulation.

Varicose Veins

  • Varicose veins as a result of venous insufficiency (incompetent vein valves). As the veins lose their ability to transport blood, the blood will pool within them to form varicose veins, and fluid will reflux into the tissue overwhelming the lymphatic vessels.

Painful SAT

  • Painful SAT that is present daily. Studies have shown that the pain associated with lipedema is greater than that associated with lymphedema.

Difficulty Losing Weight

  • Lipedema does not respond to changes in diet, exercise, or bariatric surgery.

Numbness

  • Numbness, as lipedema progresses, the pain will decrease due to peripheral neuropathy.

Liposuction to the Rescue

Liposuction at this time is the only method that we know of to effectively remove the lipedema fat. Diet and exercise can reduce "non-lipedema" fat, but the lipedema fat remains even after bariatric surgery. In the early stages of lipedema, surgical treatment is available using tumescent, or water jet assisted liposuction (WAL), both called lymph sparing liposuction, to remove lipedema fat under local anesthesia (not general).

Research shows lymph sparing liposuction yields good long-term results in a reduction of lipedema pain and in stopping the progression of lipedema. The need for conservative therapies such as MLD and compression is greatly reduced in almost all patients, and in some cases, conservative therapies can be eliminated after lymph sparing liposuction.

For patients in the more advanced stages of lipedema, where the LCT masses have formed large, firm nodules, liposuction alone will not suffice.

Since the nodules are not only extremely firm but also intertwined with other connective tissue and firmly attached to the skin or other connective tissue, manual extraction is needed. Manual Lipedema Extraction™, a procedure exclusive to Total Lipedema Care, is the only technique available to remove deep LCT nodules.

After receiving Lymphatic Sparing Liposuction, these nodules become even more apparent, meaning traditional liposuction leaves them behind. This beaded fat is gently massaged, similar to a deep Manual Lymphatic Drainage (MLD), which expresses and dislodges them through incision sites to make sure as much lipedema fat is removed as possible during surgery. This technique also leaves behind a smoother, softer skin texture.

Although there is no “cure” for lipedema, the symptoms can be managed through conservative therapies, including diet, exercise, compression garments, and also sequential pneumatic compression pumps, but the most effective reduction of lipedema tissue is through surgery with physicians who are well versed in the disease. Most patients report an improved quality of life and greater physical mobility post-surgery.

Photo credit: Shannon Goins, HaltMySwelling

Lipedema
karen herbst

ABOUT THE AUTHOR

Dr. Karen L. Herbst, MD, PhD is a board-certified endocrinologist and medical authority on Lipedema. She is one of the world’s leading researchers for connective tissue disorders, and she specializes in working with patients who have problems with their fat (connective tissue). You may recognize her as the research physician on Mystery Diagnosis, featuring a man with Dercum’s Disease (The Man with 1000 Lumps). She continues her passion for helping people with connective tissue disorders as part of Total Lipedema Care.
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