ABOUT LIPEDEMA

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 do 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 page should be reviewed in detail in order to familiarize yourself with Lipedema, its diagnosis and its treatment.

TREATING LIPEDEMA

There are many useful videos, including Continuing Medical Education (CME) materials, on Fat Disorders Resource Society’s (FDRS) YouTube channel.

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 a 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.

RESOURCES

See the items in our Resources list, especially FDRS's YouTube channel.

ABOUT LIPEDEMA

Lipedema patients seek surgery in order to alleviate pain, increase mobility, decrease joint stress, and improve their quality of life. With advanced stages, there may be extensive co-morbidities present due to the chronic nature of Lipedema. Early-stage patients, on the other hand, may be very healthy according to normal tests.

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.

The procedures most often considered for Lipedema patients include: WLS (Weight Loss Surgery) to treat abdominal obesity, liposuction, vein surgery, knee and/or hip replacements, excisions of fat nodules, and debulking/lifts/resections. WLS has very limited (if any) effect on lipedematous tissue directly although normal fat and edema can be reduced, and this information must be made known to the patient when they are considering which treatments to pursue.

It is important to note that anesthesia can be cleared through the lymphatic system and people in this patient group may have some type of lymphatic dysfunction, whether or not that can be seen in typical lymphatic imaging tests at this time.

Whenever surgery is considered for Lipedema patients, the pre-op routine, surgical technique and post-op care must be very carefully tailored to the patient. Some surgeons advise their patients to develop good routines before surgery, especially incorporating healthy eating and exercise habits. Many surgeons and clinicians advise that surgeons should go to great lengths to avoid damaging shallow and deep lymphatics and vasculature in this patient group.

LIPOSUCTION

Early liposuction techniques removed a lot of tissue without discriminating what gets removed; newer techniques focus on leaving the vasculature and lymphatic systems intact as much as possible.

Realistic expectations should be set with liposuction patients as to the aesthetic outcome, which may not be as good as they want. The surgeries necessarily must focus on alleviating pain, preventing worsening progression, and improving gait and mobility.

Although a very small number of surgeons claim to be able to remove all Lipedema fat, thereby “curing” the patient, there is no way to know if that is truly the case because there is no way to definitively say all Lipedema fat is gone, or if the underlying problem was fixed.

SURGICAL CONSIDERATIONS

Post-op care often includes compression, manual lymphatic drainage (MLD) and light exercise like walking to stimulate the lymphatic pumps.

Gait correction must be a target.

Be aware of potential mental health issues and be sure to set realistic expectations with this group.

Patient pre-op and post-op compliance are a must and setting healthy routines before surgery should be advised (eating well, MLD, compression).

Some patients may not respond in typical ways to anesthesia.

RESOURCES

Lipedema is discussed at length during the Fat Disorders Resource Society (FDRS) conferences. Those conferences provide good networking opportunities. Liposuction is always a hot topic and FDRS publishes videos on their YouTube channel.

There are several German surgeons who have treated Lipedema with liposuction and published their long-term follow-up data.

See our Resources page and these too:

Primer video

Dutch Guidelines

Should I Get Surgery? video

FDRS's old write-up on Liposuction

ABOUT LIPEDEMA

Therapists are often the first line of defense in treating Lipedema. Therapists often find that patients are misdiagnosed as having lymphedema, when they in fact have - or started with - Lipedema.

Lipedema is often compared to lymphedema because both conditions have edema and increased fat tissue.

Lipolymphedema is the term used when a patient has both lipedema and lymphedema. There is a gray area here, though, because Lipedema patients can swell.

The causes and drivers of Lipedema are unknown.

Some Lipedema patients report increased levels of inflammation.

At least one study found reduced quadricep strength in people with Lipedema.

Some Lipedema patients are hypermobile and care must be taken to not cause injury. Some exercises can help.

TREATING LIPEDEMA

Many of the current Lipedema treatments are aimed at treating the edema component. Typical lymphedema treatments may help Lipedema patients, including compression, pumps, manual lymphatic drainage (MLD), wrapping and complete decongestive therapy (CDT). Exercise is often recommended in order to stimulate lymphatic drainage by activating the calf and foot muscle pumps. Likewise, deep breathing can stimulate the diaphragm. Intense exercise may exacerbate inflammation and may not be ideal relative to walking, Pilates, cycling, yoga and aquatic exercises.

Lipedema patients may report that garments are bothersome to wear, as some patients find tight clothing intolerable. This feeling may reduce during treatment.

In general, lighter, graduated compression is preferred over other forms.

Some patients find pain relief by switching to anti-inflammatory diets; for example, eliminating Diet Coke has often been reported by patients to reduce pain.

RESOURCES

Currently, there are no Lipedema-specific training classes; however, Lipedema is usually covered under general lymphedema training curricula at all of the lymphedema therapy courses.

Lipedema is usually on the agenda at the NLN (National Lymphedema Network), Klose Training, and ISL conferences. Lipedema is discussed in depth at the FDRS (Fat Disorders Resource Society) conferences.

Please see our full Resources list for information on CME and other tools.