Lipedema physicians characterize lipedema as an increase of adipose tissue in the limbs, which may present as painful to the patient. There is a very wide differentiation in feature presentation. The pain may be constant, may come and go, or only occur when the adipose tissue is pressed on. It may be very mild or severe. The mechanism of pain sensation is not understood at this time.
Most of this patient group is prone to some amount of swelling (non-pitting edema).
To vastly oversimplify the diagnosis, look for a 'cuff' at the ankle and wrist/elbow and check that the hands and feet to NOT swell via the Stemmer's Sign test. Also check the knee areas for swelling and fat pads above the knee and inside below the knee.
Some health care professionals identify lipedema by the texture of the subcutaneous fat. Depending on the stage, lipedema fat can feel like it has grains of sand or rice in it. More advanced stages can feel like frozen peas in a bag or even larger nodules. Lipomas may be even larger, reportedly up to the size of grapefruit.
Differentiation between venous disease (test via venous ultrasound), obesity (examine fat depot locations), lymphedema (possibly test via lymphoscintigraphy), lipedema and Dercum's Disease is important. The Diagnosing 1, Diagnosing 2, Primer, and Leg Swelling videos will be of use.
The tools listed on our Resources page should be reviewed in detail in order to familiarize yourself with lipedema, its diagnosis and its treatment.
The University of Arizona TREAT Program will be publishing educational materials later in 2017 and we are eagerly awaiting that material. In the meantime, there are many useful videos on FDRS's YouTube channel as well as CME.
Treating lipedema is multi-pronged and should focus on alleviating pain, improving lymphatic flow, reducing inflammation, emotional support and helping the body deal with lipedema. The Treatment Butterfly is well-received by patients.
Lymphedema therapists can treat swelling and may be able to improve tissue health through manual therapies.
Several patients have reported that switching to anti-inflammatory or other diets reduced or eliminated pain in short time.
There is a lot of confusing messaging around surgery for this patient group, especially liposuction. In general, depending on the patient's circumstances, it may be more pragmatic to start the conservative therapies immediately and have the patient do extensive research into surgery.