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About Lipedema
Lipedema is characterized by an increase in bilateral, symmetrical adipose tissue in the limbs and/or lower trunk, and often presents with pain. The pain may be constant, come and go, only occur when pressure is applied to the adipose tissue, and may range from mild to severe. The mechanism of pain sensation is not currently understood.
Lipedema tissue is typically resistant to diet interventions and exercise compared with obesity-related fat tissue.
Many people experience some amount of swelling (non-pitting edema) in affected areas. However, when the Stemmer sign test is performed, many Lipedema patients present with a “negative” sign, as Lipedema does not usually affect the hands or feet. This also leads to the appearance of a “cuff” at the wrists or ankles.
Differentiation between Lipedema and venous disease, obesity, lymphedema, and Dercum's Disease is important. Check out our Educational Videos & Media page for more information.
Diagnosis
Lipedema requires a clinical diagnosis, meaning there is not yet a standardized test such as bloodwork or imaging that can confirm the presence of Lipedema. Diagnosis should be reached in the context of a thorough patient history and physical exam. See more about how a diagnosis is reached on our Diagnosing page and which healthcare professionals might be involved on our Finding a Lipedema Specialist page.
Treatments
Because Lipedema is not yet well understood, no one yet knows what will help people with Lipedema best. Everyone's bodies are different, and as of now, we do not have any single formula that works for everyone. As you incorporate different treatments to see what works best, you should start each new thing slowly, one at a time, to see if it helps. A great place to start is by seeing a therapist familiar with Lipedema to begin your care journey.
DO NOT STARVE YOURSELF. Eat better quality food in a healthy quantity.
Do not focus on weight, but do try to manage any swelling, and try to build muscle while protecting joints and ligaments in order to support your body and stay as active as possible. It is important to remember that there are a few categories of things that contribute to one's weight: food in the digestive track, muscle, regular fat, Lipedema fat, fluid and even skin. It can be hard to determine which are changing.
The goals of treatment are: reduce inflammation, manage pain, improve lymphatic flow (to reduce excess fluid), get emotional support, and help your body deal with Lipedema. Learn more about treatments for Lipedema on our Treating page.
Tools to get Started
Due to limited staff, LF does not directly support patients - we focus where we can make a difference today (with research). We encourage patients to check out our Resources page, view the FDRS Videos, and join the FDRS Facebook page and the LF Facebook page.
A Note for Caregivers
It can be difficult for someone who does not have Lipedema to understand what a person with Lipedema is going through. Lipedema fat tissue can hurt, and it can hurt a lot. The unknowns of the disease are stressful. There are few treatments backed by research. The threat of loss of mobility is terrifying. Encourage your loved ones to seek medical and emotional help and to join a Facebook group with a vibe they enjoy.