Orca underwater in the Salish Sea off of Port Angeles, WA.
This photo was taken by my husband Eric Evans.
Lipedema is a disease that usually develops during puberty or within a few years and affects women in most cases. Most obviously, both legs (sometimes arms) are equally enlarged with a “saddlebag” appearance at the hips and larger ankles but normal-sized feet. The legs bruise easily and can be painful or achy when standing or walking for long periods of time. Diet and exercise alone typically fail in reducing the size of the legs. This difficult cycle of failure despite excellent compliance with diet and exercise can lead to depression. Often women will turn to the use of diuretics and laxatives out of desperation to reduce the leg size. However, diuretics can worsen the swelling problem and cause further frustration due to a lack of progress. Obesity can worsen the problem and accelerate the cycle of failure leading to even more weight gain. It is a vicious cycle that does have a chance to change with the treatment protocol Complete Lymphedema Therapy (CLT).
Cause of Lipedema
Lipedema is caused by an accumulation of abnormal or “sick” fat, according to Michael Földi, M.D. The subcutaneous adipose tissues (fat cells) proliferate which causes compression of the superficial lymph collectors (located just under the skin). The blood capillaries are fragile and cause an increase in the blood escaping the arteries leaving more to be transported back to the heart by way of the veins. This results in excess fluid remaining in the interstitium (“tissue spaces”--space surrounding the veins, arteries, lymphatics, muscles, and organs). Ultrafiltration is the process of blood leaving the arteries and Reabsorption is the suction of blood products back into the veins and the lymphatic vessels which will return to the circulatory system. Because the blood capillaries are fragile there is more ultrafiltrate leaking out and remaining in the interstitium especially when a person is upright. The elasticity of the skin and the tone (or tightness) of the body’s tissues are decreased. All of these factors: more fluid remaining in the tissues, fragility of the blood capillaries, and the decrease in elasticity and tone all contribute to the accumulation of liquid in the tissues. This means that by the end of the day, especially after being upright, there is likely more swelling and puffiness in the legs or ankles. In the soft, sponge-like swelling, a fingerprint indentation or "pitting edema" is rarely present. This pitting is less common in Lipedema than it is in Lymphedema or Chronic Venous Insufficiency (CVI). (See handouts: Lymphedema & CVI).
Can diet and exercise have an effect?
Often women try every diet and exercise form available without any decrease in the swelling of the legs. Many people are considered “fat” due to this condition. However, diet and exercise alone will not have any effect on lipedema. I have found that food sensitivities can often cause more swelling. When these sensitivities are identified and avoided, this can be very helpful in reducing the leg swelling and keeping weight under control. In the later stages, this disease is often associated with obesity. Lipedema in combination with obesity tends to cause a secondary chronic venous insufficiency and eventually lymphedema to develop which causes an increase in swelling and sometimes hardening of the tissues. Women who suffer from lipedema and maintain a normal body weight can remain unchanged for decades without developing secondary lymphedema.
Lymphatic safety valve function
The lymphatic system has a built-in “safety valve function” which is an increase in the intensity of the lymphatic system to handle the excess fluid. The body works harder to control the swelling; however, no machine can work at peak performance forever and over time this safety valve function will stop and the lymphatic system will fail. A persistent overload of the lymph collectors causes more damage to the lymphatic vessels and a back up or congestion of lymph fluid begins. This can be seen when the foot becomes swollen. Now the foot swells and thickening or hardness can develop. At this point, lipo-lymphedema–a combination form of lipedema and lymphedema–has developed.
The following table compares lipedema with lymphedema:
Without appropriate treatment, lipedema worsens. When body weight is controlled the swelling is less but over time it worsens. The top half of the body is commonly smaller but the legs are bigger. Legs that are soft and spongy from the ankle to the outer hip have lipedema. Lipedema is commonly seen in families. These photos show a daughter in her early teens with early lipedema and her mother in her 30s with moderate lipedema. The later lipedema photo shows a significant case of lipedema, not related to the other two. This later photo is interesting in that is shows how tiny the trunk is in relation to the hips and legs. This problem is not just because she is overweight, it is due to the swelling problem of the legs. With increasing body weight the problem worsens.
Lipedema early-stage Lipedema moderate Lipedema late
Treatment for lipedema
Treatment can be beneficial but early treatment is more helpful. Stage II-III lipedema can be painful and treatment can help decrease pain. Once the congestion is removed, the pain should decrease and compression typically helps. Phase one of treatment-“phase of decongestion” performed with Complete Lymphedema Treatment (CLT) is the same as treatment for lymphedema and chronic venous insufficiency. CLT consists of manual lymphatic drainage (MLD) a massage technique, which mobilizes the stagnating lymph fluid; compression with specialized short-stretch bandages worn 22-24 hours daily; exercises; and skincare.
Once the girth of the limb stabilizes and decongestion has been achieved phase two of treatment is needed. Phase two of treatment or “phase of maintenance and optimization” in which measurements are taken for compression stockings ideally custom-fit to be worn daily. If one component of CLT is not performed, treatment will not be successful. According to Michael Földi, M.D., a patient with lipedema who receives treatment early enough and who remains especially compliant with wearing of adequate compression stockings every day for 5 years can sometimes see the fat virtually melt and return to normal tissue. If this occurs, they no longer have to wear compression stockings. This is typically before the age of 30.
I have seen people with lipedema in phase one of treatment using specialized short-stretch bandages who found their food sensitivities because the bandages got tighter when they ate certain foods. When they ate something they were sensitive to it caused them to swell everywhere. Commonly, people with lipedema have significant food sensitivities and once these are identified and eliminated, it can help prevent the swelling from worsening.
Lipedema vs. Lymphedema
Symmetrical legs Asymmetrical legs
Legs of equal size One leg bigger
Foot normal size Foot swollen
Hematoma/bruising Typically does not bruise
Rare cellulitis infection Frequent cellulitis infection
Swelling soft & Spongy Swelling hard and thick