I wanted to take the opportunity today to talk about a condition which is relatively little known, even among the medical community, and yet is the cause of a great deal of discomfort, both physical and emotional, among a large number of patients, almost exclusively women. The condition is called Lipedema (no, not lymphedema) and may be present in up to 11% of all women.
Lipedema literally means “swollen fat” and is related to excess fatty deposits in the buttocks, thighs and calves, as well as upper arms, often associated with sensitivity to touch and pain in the legs. The condition is not related to obesity although some patients may be obese, which can further worsen symptoms. The fats deposits associated with lipedema tend to be, as mentioned, localized to the legs and upper arms and many female patients with lipedema have a completely normal waist configuration, perhaps further accentuating the disproportionate nature of the fatty accumulations. Many patients with lipedema have tried many diets with loss of weight in the chest and abdomen with no change in size of the legs while dieting, leading to progressive stress and further dieting and fad weight loss attempts.
The exact cause of lipedema is still uncertain, despite the first descriptions of the condition in the 1940s. There appears to be a genetic tendency, and up to 60% of patients appear to have a family history. With the condition nearly exclusive to women, there appears to be a fairly strong hormonal influence with changes tending to appear and progress in puberty, pregnancy and menopause and may also be influenced by birth control pill use and replacement hormone therapy. There is good evidence that abnormally large fat cells may be associated with fragile blood vessels that allow fluid leakage into the tissue around the fatty deposits and cause inflammatory change that may irritate nerve endings and damage lymph vessels that clear fluid out of the legs, resulting in the “edema” component of the disorder.
Physical hallmarks of lipedema can and often include:
- Fat deposits on the buttocks, thighs and calves. The deposits often have a nodular feel to them, perhaps similar to a small nut or BB
- Easy bruising
- Swelling that will only minimally indent when the skin is pushed upon
- An ankle cut-off sign, with swelling extending to the ankles but crossing into or involving the feet.
- Increased joint instability can lead to a “knocking knee” deformity
Many patients with lipedema have small spider veins or varicose veins and up to 25% have severe venous leakage that worsens fluid accumulation and inflammatory changes and can lead to further damage lymphatics leading to lipo-lymphedema and worsening pain.
Key points to remember:
- Lipedema is not obesity. Some patients are overweight and often dismissed as obese by their physicians, who are often under aware of the disorder
- The condition is quite likely largely genetic and not typically any fault of the patient
- Diet and exercise will not remove lipedema fat
- There is no known “cure”, but therapy and treatment may greatly improve symptoms and quality of life issues
“Doctors often don’t understand that exercising and dieting won’t get rid of this lipedema fat.”
Proven treatments for lipedema are limited at this time and focus has turned to lifestyle treatments to help symptoms and prevent progression
Diet and exercise – A heart-healthy program helps to prevent development of superimposed obesity that will often worsen symptoms and can help with joint pain and improved flexibility.
Correction of venous and lymphatic issues – Compression and/or definitive treatment of venous leakage issues can provide relief of pain and prevent progressive symptoms.
Physical and occupational therapy – Manual lymphatic drainage may be learned by the patient to improve drainage and help with symptoms and may contain fatty extensions.
Liposuction – In some cases, surgical removal of fatty deposits may provide marked symptom relief.
Some sites that may provide information and support:
If you have concern that you may have lipedema, talk with your primary care doctor. Ask for information or referral. Not all primary care physicians are familiar with the disorder but will almost certainly be willing to research the options for you. “You’re just fat” shouldn’t be an answer….