Lipedema is a misunderstood fat disorder that, up until now, had few therapy options. Fortunately, awareness of lipedema has increased dramatically and therapy for lipedema is increasingly available.
What is Lipedema?
Lipedema is a chronic adipose tissue or fat disorder. With lipedema, adipose tissue (fat) builds up, typically in the hips and legs and sometimes in the arms. Like obesity, fat in lipedema is bilateral and symmetrical. Unlike obesity, fat does not accumulate in the hands and feet. On the surface, the differences between obesity and lipedema seem subtle. In fact, many healthcare workers, including doctors, do not recognize a distinction between the two or know about therapy for lipedema. So what is the difference between obesity and lipedema?
Obesity is a disease – a pathophysiological response to internal or external factors that, for obesity, result in excessive fat accumulation. Lipedema is a disorder – a disruption of regular bodily functions that, for lipedema, result in abnormal fat accumulation. In normal fat tissue, the fat cells butt up tightly together. In contrast, lipedema fat cells have space between them. This space often fills with fluid that, in turn, can result in lymphedema.
Without treatment, the fluid sitting in the tissues can create inflammation. In turn, inflammation can result in fibrosis. Fibrosis is the thickening or scarring of connective tissue. It further restricts the flow of lymphatic fluid resulting in a downward spiral of advancing tissue dysfunction. As fibrosis increases, layers of the epidermis become thickened and an unusual tissue texture develops that can feel like rice or frozen peas under the skin.
Who Gets Lipedema?
Lipedema occurs almost exclusively in females, and usually begins or gets worse during puberty, pregnancy, or menopause. Men who get it have low testosterone, high estrogen conditions. People with lipedema also tend to have:
Increased Vascular Fragility
- They bruise easily.
- Lymphatic capillaries are leakier – they don’t pick up fluid as well and leave more fluid behind. Leaky lymphatics result in fat tissues growing like crazy in the protein rich lymph fluid.
- Varicose veins are common.
- Elastic fibers are abnormal. In one study, 60% of people with lipedema had hyper-mobility by the Beighton score
- They have pain in their muscles or tissues with touch or pressure in contrast to joint pain that is common in people with obesity.
- There are more macrophages in their tissues. Macrophages play a critical role in the initiation and resolution of inflammation and increased macrophages indicates the presence of inflammation.
- They have elevated CH50 (also known as a total hemolytic complement). Elevated CH50 indicates chronic inflammation. People with high CH50 have a reduced likelihood of weight loss after bariatric surgery than people with normal levels.
- They fatigue easily and have difficulty walking because increased fluid and inflammation results in reduced oxygen to the tissues.
- More than half are overweight or obese. Although lipedema is a fat disorder and is not caused by obesity, many struggle with being overweight as well. Given that, weight loss does not change the size and shape of their affected areas.
Stages of Lipedema:
Lipedema progresses through three stages.
Stage 1: Fat begins to accumulate in the hips and legs
- but the skin surface is smooth
- there is not fat on the feet but there can be cuffs at the ankles
- swelling comes and goes depending on various circumstances
Stage 2: fat globules stick together due to inflammation
- the skin surface is uneven with indentations and indurations
- nodules develop in the subcutaneous fat tissue that feel like “beans in a bag” and there is a visible “dimpling” of the skin
- there is increasing tenderness and pain
Stage 3: fat growth continues
- the skin surface and tissues develop increasing indentations with deformations
- large masses of skin and fat create folds and overhangs especially at the hips, thighs, and knees
- ankle cuffs are usually present
- when lymphedema is present, the subcutaneous tissues thicken and a honeycomb appearance develops due to fluid buildup in subcutaneous fat
- pain and tenderness worsen considerably as does difficulty with mobility
Stage 4: the lymphatic system is significantly compromised
- lymphedema or Lipo-Lymphedema results and swelling is persistent
- debilitating “lobules” of skin and fat develop, typically on the medial thighs and knees, that significantly limit mobility
- classically, there are profuse cuffs at the ankles
Patterns of Lipedema:
Lipedema can manifest with fat accumulation in five different patterns with Types 1 through 3 being are the most common:
Type 1- Pelvis, buttocks, and hips
Type 2- Buttocks to knees, with formation of folds of fat around the inner side of the knee
Type 3- Buttocks to ankles
Type 4- Arms
Type 5- Isolated lower leg
What Causes Lipedema?
The exact cause of lipedema is unknown. For many people (but not all), this condition runs in families. In one study, 63% of people with lipedema had at least one relative with lipedema. Other studies have led researchers to believe tissue changes with lipedema are influenced by the gene SPARC (secreted protein, acidic, cysteine-rich). The Lipedema Foundation is actively involved in research and has a patient registry for data collection. Their goal is to better understand what causes lipedema and how to effectively treat it.
Because lipedema is a fat disorder, conventional methods used to lose weight don’t work for people with lipedema. Dieting, exercising, bariatric surgery, diuretics, elevating your legs and compression stockings do not change the affected areas of lipedema.
For example, dieting didn’t work for this woman. She starved herself and still had fat deposits on her hips and legs.
Exercise didn’t work for this woman. She ate nothing but salad and exercised 6 hours a day for a year and still had fat deposits on her hips and legs.
How to Diagnose Lipedema
The best way to diagnose lipedema is to undergo a complete medical history review and manual inspection by a trained clinician. The healthcare professional will palpate the extremities to determine if the fat has an atypical texture, such as ‘grains of sand or rice’, tiny pebbles or pea-like nodules and/or large strands of nodules. The atypical texture may be shallow or deep and may be difficult to feel, especially if swelling is present.
Once diagnosed with Lipedema, it is important to seek treatment from a qualified therapist for Lipedema management.
Therapy for Lipedema
Unfortunately, there is not a “cure” for lipedema at this time. Having said that, it is possible to effectively manage lipedema for optimal outcomes. Therapy for lipedema includes:
- Managing co-existing health conditions that may cause leg-swelling such as peripheral vascular or cardiac issues
- Getting Emotional Support
- Reducing Inflammation
- Improving Lymphatic Flow with use of Complex Decongestive Therapy
- Light to moderate exercise
- Surgical Options: Liposuction
- Managing Pain
Because lipedema is poorly understood by not only medical professionals but the general public as well as, many people with lipedema have been made fun of, bullied, and discriminated against. Sometimes the emotional trauma from fat shaming can be harder to manage than the actual lipedema itself!
Ioana Chira, a fitness instructor whose photos went viral on Instagram said in an interview; “Lipoedema has caused so much pain over the years. When I was a teenager I was called fat and a whale and horrible things like that. As I got older I started working out regularly but I found it impossible to reduce the size of my legs.” Over time and with support from others with lipedema, Ioana was not only able to embrace her body shape, but inspire others to do the same. “I’ve had body confidence issues my whole life and it has taken a long time to get to the point where I love my figure just the way it is.”
Support groups are one way to get the emotional support you need. One of the biggest advantages of support groups is helping a person realize that she is not alone — that there are other people who have the same problem. This often is a huge relief. Not only does being in a support group help you develop skills to relate to others but also members of the group can support each other and find new ways of dealing with a particular problem.
Because inflammation is a factor in lipedema, controlling inflammation and avoiding inflammatory foods is an important part of management.
- Dairy: Milk is high in saturated fat and a majority of adults have at least some difficulty digesting milk, so overdoing it could trigger a true inflammatory reaction
- Sugar and Saturated Fat: Foods high in sugar or saturated fat cause over-activity in the immune system and can spur inflammation.
- Trans fats can induce inflammation by damaging the cells in the lining of blood vessels,
- Refined Grains and Grain-Fed meat leads to a greater concentration of a certain inflammation marker in the blood
- Alcohol: too much alcohol allows bacteria to more easily pass through the intestinal lining, leading to irritation and inflammation
Complex Decongestive Therapy
Complex Decongestive Therapy (CDT) helps manage the movement of lymph fluid to reduce inflammation and swelling. By decreasing inflammation and swelling, people with lipedema have less pain, have more energy, and can move easier. Complex decongestive therapy has four components and is most effective when used comprehensively. If one of the components is missing, effectiveness of the therapy is reduced. Complex decongestive therapy includes:
- Manual Lymphatic Drainage (MLD): MLD is a gentle pressure massage used to move lymph fluid from an area that cannot drain to an area that can drain to help relieve swelling.
- Compression Garments or Wraps: With lipedema, the tissues aren’t holding everything in place so light compression compensates for this lack. Therapeutic compression that is 10-20 mmhg of pressure usually works best. Higher amounts of compression such as Class 1 garments at 20-30 mmhg, Class 2 garments at 30-40 mmhg or even short stretch wraps can be too much and be painful.
- Remedial Exercises: One of the forces that helps move lymphphatic fluid through the lymph system is pumping of muscles. Consequently, light to moderate exercise is an important part of managing lipo-lymphedema. Low impact exercise that minimizes stress to the joints is ideal. Types of exercises for lipo-lymphedema include swimming, walking, riding a bike, Yoga and Pilates.
- Proper Skin Care & Diet: Good nutrition is essential to good health for everyone, but especially those with lipo-lymphedema. Because people with lipedema have a tendency to chronically diet, they are at risk for being malnourished. That teamed with stagnate fluid in the tissues puts them at high risk for infection and reduced ability to heal.
Because complex decongestive therapy is more than just massage or exercise, you will want to find a therapist who is qualified to provide this service. Look for therapists who are Certified Lymphedema Therapists (CLT). They are physical, occupational or massage therapists who have completed advanced training in complex decongestive therapy and passed the certification exam. Because of their advanced training, they are more knowledgeable about the lymph system and better equipped to treat patients with lipedema.
Because fat in lipedema does not go away with diet and exercise, specialized liposuction is a good management option for some people. Unlike conventional liposuction methods, these specific techniques gently loosen and detach fat cells before removal, leaving the surrounding lymphatics, connective tissue, nerves, and blood vessels much less traumatized and better able to function normally.
Improved appearance is one benefit of specialized liposuction, but the main objective of the of these procedures is to alleviate pain, increase mobility, and prevent the progression of lipedema.
Because lipedema can severely limit a patient’s activities of daily living (ADLs), experts agree that these are not cosmetic procedures but instead are absolutely medically necessary. Each patient is unique; therefore, the types and combinations of treatment may vary.
Water-Jet Assisted Liposuction (WAL): During the WAL procedure, fat is gently detached from the tissue structure by a flat, fan-shaped water-jet, and then aspirated.
Power-Assisted Liposuction (PAL): PAL is performed using a special cannula (the liposuction tube used to remove fat). The cannula uses tiny, rapid vibrations to break up fat cells before suctioning them out of the body. This enables the doctors to remove more fat in a shorter period of time, which leads to enhanced results, a safer procedure, and faster recovery. PAL is performed by injecting an anesthetic into the treatment area for smooth fat transfer through the cannula, called the tumescent liposuction technique.
All of the management strategies – managing health conditions, getting emotional support, reducing inflammation, improving lymphatic flow, exercising, using compression, and considering liposuction –reduce pain from lipedema. Taken together they have a compounding effect making the results even greater.
What to Do Now?
Although it is not readily diagnosed, awareness of lipedema is improving and with improved awareness, patients with lipedema are getting the support and treatment they need. If you think you have lipedema, reach out to a knowledgeable healthcare clinician today!. Together you can develop a plan that works best for you to become healthier, more confident and embrace who you are.