Lipedema

Lipedema is a chronic, progressive disorder that is characterized by abnormal distribution of adipose tissue. This results in disproportion between extremities and trunk. The disproportion is caused by a localized, symmetrical increase in subcutaneous adipose tissue, typically in the lower extremities, less common also in the upper extremities. Compression wear is one very important element in the treatment of lipedema.

Woman shopping clothes, wearing flatknit compression stockings

What is lipedema?

Big legs, protruding buttocks – often, lipedema is wrongly judged as being overweight or obese. But lipedema has nothing to do with being overweight. Lipedema is the result of a pathological build-up of fat cells in the extremities. Typically, it affects the legs. Since lipedema occurs almost exclusively in women, experts assume hormonal causes.

Despite a conscious diet and exercise, the affected women typically gain weight in their legs and/or, less commonly, arms. The increased accumulation of fat cells cannot be reduced by calorie reduction.

What is the cause of lipedema?

There is no exhaustive research on lipedema yet. One thing is certain though – this chronic disease is not caused by improper nutrition or excessive food intake. Experts presume a genetic predisposition as well as hormonal triggers.

Lipedema often starts during puberty. However, oral contraceptive use, pregnancy, and menopause also seem to be triggers. In men, lipedema-like changes have only been described in the context of hormonally active therapeutic agents, pronounced hormone imbalances (for example, hypogonadism), or liver cirrhosis. 

What are the signs and symptoms of lipedema?

  • Considerable tissue enlargement; usually bilateral and symmetrical without involvement of the hands and feet. The pattern of affected areas may vary from patient to patient. It most commonly affects the legs, thighs, hips, and/or buttocks, but it can also affect the arms.
  • Pain and extreme sensitivity/tenderness to touch and pressure in the affected areas.
  • Swelling and feeling of heaviness in the affected limbs.
  • Limited mobility, muscle weakness.
  • Cuffing or “braceleting” at the ankles/wrists: The tissue enlargement stops abruptly at the ankles or wrists so that there is a “step” before the feet or hands which are usually unaffected.
  • In lower-limb lipedema, loss of the concave spaces on either side of the Achilles tendon.
  • Tendency to easily bruise:  May occur anywhere in areas affected by lipedema without any apparent cause.
  • Altered skin appearance, temperature, and texture: Softer and cooler skin in comparison to unaffected areas; texture of orange peel or with larger dimples.
  • Abnormal gait, limited mobility, and muscle weakness.
  • Stemmer’s sign is negative. This means that a fold of skin can be pinched and lifted up at the base of the second toe or at the base of the middle finger.
  • Pitting edema (in patients with lipedema or lipo-lymphedema and/or CVI): Usually absent in the early stages; indicates the presence of excess interstitial fluid. 

The stages of lipedema

Experts divide lipedema into three stages. Symptoms of lipedema can vary greatly from person to person -- not all patients, for example, reach stage three. 

Stage I: The skin appears smooth. If pressed on, uniformly thickened subcutaneous tissue with soft consistency.

Stage II: The skin shows an irregular texture that resembles the skin of an orange. Subcutaneous nodules that vary in size are palpable.

Stage III: The volume increase of the subcutaneous fat tissue has progressed further with larger and more prominent indurations than in Stage II. Deformed lobular fat deposits that may cause considerable distortion of the limb profile are present.

Can I prevent lipedema?

Since the causes of lipedema have not been conclusively determined, there are no preventive measures either.

Weight can aggravate the symptoms and favor the progression of the disease, therefore a healthy diet may have a positive influence. 

What can I do about lipedema?

Have you been diagnosed with lipedema? This chronic, progressive disorder is marked by the individual variability and unpredictability of its clinical course. 

Therefore, treatment consists of several therapeutic approaches that should be combined as necessary.

Physical therapy

Manual lymphatic drainage helps to activate the lymphatic vessels and to ensure faster drainage of the lymphatic fluid. This reduces swelling in the legs. Also, the use of compression wear helps by reducing the development of swelling and the painful sensation. Exercise and skin care are also important parts of physical therapy.

Physical activity

Exercise, such as walking, swimming, or hiking, are good for body and mind and help to alleviate discomfort.

Psychotherapy

The psychological strain of living with lipedema  can be considerable. They may hear snide remarks: eat less, exercise more... Statements like these could further reduce their self-esteem; the stress could lead to depression and eating disorders. A person with lipedema may feel insecure about his or her appearance and experience a loss of self-esteem. In some cases, these feelings can lead to depression, eating disorders, and other psychological problems. Psychotherapy may be recommended to help build coping skills.

Liposuction and plastic surgery

Surgery is indicated if, despite thorough conservative treatment, symptoms persist or worsen. If present, morbid obesity should be therapeutically addressed prior to liposuction. Following liposuction, patients should wear compression garments for several weeks.

Summary

Lipedema is a chronic, progressive fat tissue distribution disorder almost exclusively in women. 

Basic medical knowledge on lipedema

  • Clinically, lipedema is characterized by abnormal distribution of adipose tissue, resulting in pronounced disproportion between extremities and trunk.
  • Said disproportion is caused by a localized, symmetrical increase in subcutaneous adipose tissue, typically in the lower extremities and less often in the upper extremities.
  • Other findings include pain and extreme sensitivity/tenderness to touch and pressure in the affected areas, edema (aggravated by orthostasis), and easy bruising following minor trauma.

 

Further reading