Lipedema is characterized by increased adipose tissue in the limbs, and the adipose tissue 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 grossly oversimplify the diagnosis, look for a 'cuff' at the ankle and wrist and check that the hands and feet to NOT swell via the Stemmer's Sign test.
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 FDRS Treatment Butterfly is well-received by patients.
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. The FDRS's write-up is helpful.