We’ve all seen them: the ladies at the grocery store with enormous legs who can’t walk far enough to do their shopping, so they have to use the motorized carts. Maybe we’ve wondered, how did that happen? How did it go that far? What is going on for her? And what if she comes for massage?

“I can’t play with my grandkids. I can’t have them sit on my lap, it’s too painful. I can’t even have my dog on my lap. It just hurts too much.” —Anonymous

Our culture is brutal to people who don’t fit a certain standard of physical appearance. It’s easy to be judgmental and to assume that if a person has developed such a distorted, outsized body that she can no longer walk, it must be somehow her fault, and the result of her lack of self-discipline. (These thoughts sometimes occur to me as I wander over to the bakery section to get an apple fritter—my favorite grocery shopping reward.)

The truth is so much more complicated. We’ve already learned that obesity is a notoriously difficult condition to combat, but this situation, which is often a combination of obesity and dysfunctional fat metabolism in the lower extremities (lipedema)—and maybe some lymphedema too—is not a consequence of poor eating and exercise decisions. It is instead a chronic, painful, potentially debilitating condition that drastically affects the person’s quality of life.

What Is Lipedema?

Lipedema (literally, “fat-fluid retention”) was first documented in 1940. It was identified as a problem with the deposition of abnormal fat cells, but some specialists now suggest it is a disease of the connective tissue, with the central feature of a loss of elastic recoil in the subdermis.

Experts disagree on many things about lipedema: how common it is, whether it is genetic, whether it is progressive, whether edema is even a significant factor, and how to treat it. The topic of lipedema is awash in contradictory observations, inconsistent research findings, and various treatment options that include surprisingly different types of manual therapies.

Lipedema has traditionally been called a rare condition, but it is probably much more common than we think. It is hard to estimate its prevalence, because we don’t have a widely accepted set of diagnostic criteria, and many doctors are not skilled at recognizing its early signs.

We know that lipedema is almost exclusive to women. When it is seen in men, it is often attributed to hormonal imbalances with low testosterone and estrogen dominance. It appears around times of hormonal activity: puberty, pregnancy, and menopause. Some research suggests that up to 10 percent of women who are treated for any kind of lymphatic issues in the legs have lipedema, but other specialists suggest that about 10 percent of women overall may be affected by lipedema, which of course is a much larger number.

Lipedema is not the same as obesity, but many patients who have lipedema are also obese by BMI standards. Lipedema is not the same as lymphedema, but many people with advanced lipedema eventually develop lymphedema, and it can be hard to distinguish between them. Lipedema is not Dercum’s disease (a genetic disorder involving painful fatty tumors) but overlap between these conditions happens too. All of these comorbidities add to the confusion surrounding this disorder.

To understand lipedema, we need to review and possibly update what we understand about fat cells.

Fat Cell Review

Fat cells, or adipocytes, perform many functions that we are still learning about: they interact with endothelial cells of nearby capillaries; they secrete hormone-like chemicals that impact many metabolic functions; they influence immune system activity; and much more. They are also effective storage tanks for energy from our incoming nutrition (amassed in the form of triglycerides). If a person is underweight, these storage tanks are still present, but they are shriveled and small. If a person is well nourished, their storage tanks are bigger. And if a person is over nourished, then those storage tanks grow in size but usually not in number—or so we thought. It turns out that anyone—not just people prone to lipedema—can accrue new fat cells in adulthood. This typically happens in the lower extremities, and it is not necessarily a bad thing: fat in the calves, thighs, and buttocks (as opposed to the belly) has a protective effect against some diseases. For more fast fat facts, see the video that accompanies this article.

Why Is Lipedema Different?

The fat that develops with lipedema is different from non-lipedema fat. For most patients, this condition begins with the development of new fat deposits in the legs. These fat cells are embedded in thick connective tissue that appears to have poor quality elastin. Affected tissues become thick, dense, and heavy. Lymphatic flow changes, with the finding of tiny microaneurysms of lymphatic capillaries deep within these fatty deposits. Early observers documented extensive fluid accumulation in the affected areas, but more recently some specialists have questioned that phenomenon.

For reasons that are not clear, lipedema fat cells are sequestered from the person’s metabolism: diet and exercise habits that lead to the shrinking of normal fat cells do not change the deposits seen with lipedema. Even bariatric surgery and a severe restriction of caloric intake have no effect on the size of the fatty deposits in the legs of people with lipedema.

Why does this happen? We don’t know. Part of the issue is genetics: some evidence suggests this is an inherited disease. Because the development of symptoms is associated with hormonal shifts, it seems clear there is some kind of estrogen-based influence on the process. Changes in lymphatic vessels are a predictable feature, and some specialists wonder if this might begin a vicious cycle with persistent shifts in circulation between cardiovascular and lymphatic capillaries.

“We just have big legs! My mother had big legs, my grandmother had them, and now I have them too!”—Anonymous

Signs, Symptoms, Complications

Most people with lipedema develop fatty deposits in the legs, hips, and buttocks. They are bilateral and symmetrical, and they do not extend into the feet. This causes a distinctive “cuffing” of the ankle. About 30 percent of patients develop deposits in the arms, and it does not extend into the hands, so the wrists may appear to be cuffed. This condition also has a characteristic texture: it begins as tiny palpable subcutaneous nodules, like grit or grains of sand. These fatty deposits then grow to be pea-sized, and eventually much larger. The development of thick, dense connective tissue around and between the fatty growths contribute to the pebbly appearance. The nodules bruise easily, they often have spider veins, and they hurt—with palpation and without it.

The accumulation of abnormal, painful fat deposits in the limbs is just one aspect of lipedema. Swelling is common, although pitting edema is not. Hot weather and exercise exacerbate swelling, which is persistent even when the legs are elevated. Enlarged legs can cause problems with knee arthritis, overpronation and foot pain, gait changes, and ultimately the loss of ambulation. People with lipedema are prone to eating disorders that can become dangerous and even life threatening. Advanced lipedema may complicate into lymphedema (now called lipo-lymphedema) and its accompanying risks of skin damage and infection.

But beyond that, consider the whole-person consequences of having ever-enlarging fat deposits that don’t change, no matter what you do. Difficulties with movement and sedentariness slow metabolism even further, compounding the overlap between obesity and lipedema. It may become impossible to travel on public transit, sit in public settings, or use public toilets. Problems with mobility, finding comfortable clothing, and fear of judgment can keep people isolated, which is likewise detrimental to overall health. Self-care becomes increasingly challenging, as the logistics of bathing, dressing, and getting around the house can be overwhelming.

Depression and anxiety contribute to the vicious cycle of self-loathing and fear of going out. Without good care and a strong support system, lipedema can be a debilitating, life-shortening disease.

Treatment

The treatment goals for lipedema are consistent across disciplines: reduce or eliminate inflammation, swelling, and pain; improve lymphatic function; and expand the patient’s overall quality of life with physical, mental, and emotional support. Interventions may be noninvasive or highly invasive, depending on the stage at which treatment begins and the needs of the patient.

Noninvasive interventions begin with gentle exercise to use leg muscles to pump lymph and improve venous flow. Many patients find that swimming and other water-based exercise is pleasurable and pain free. A low-carbohydrate eating plan is recommended to keep obesity from developing or becoming worse. Skin care is important to manage infection risk, especially if lymphedema has developed. And decongestive therapy is emphasized, with compression garments, pneumatic compression pumps, manual lymphatic drainage, and wrapping. Specialists also recommend skilled psychological care to address some of the many emotional issues that lipedema can cause and reinforce.

If these interventions are not adequate, then lipedema patients may pursue surgical interventions: liposuction and/or lipectomy.

The liposuction techniques used for lipedema are different than those used for cosmetic surgery. In addition to removing fat (although it is impossible to separate normal fat from lipedema fat), it uses low concentrations of analgesic that can offer symptomatic relief. These procedures involve multiple surgeries, and skillful massage is often recommended during recovery. The purpose of liposuction for these patients is not to sculpt the legs into a more “normal” appearance, but to improve function to restore or maintain mobility.

If liposuction is not adequate, then lipectomy—the surgical removal of some fat deposits—may be recommended. Again, this is not to improve physical appearance; it’s to help manage the disease so that the person may be able to restore some quality of life.

Where Does Massage Fit?

In pulling together resources to write this article, I came across some problematic statements about the role of manual therapy for people who have lipedema. Specifically, I saw in more than one place the idea that “massage can break down fibrosis.” I would like to voice some healthy skepticism on this point.

Massage therapy may alter the quality of the tissues that are involved in fibrotic deposits, so that freedom of movement and local fluid flow is improved, and pressure may be taken off of irritated tissues and nerves. But to claim that manual therapy will reduce or break down fibrosis is probably erroneous.

What can we do? Our work can relieve swelling and pain. This is a substantial benefit!

“I’ve seen that manual lymph drainage can have an analgesic effect, so it can reduce their pressure sensitivity and make their uber-important compression garments easier to tolerate.”—MB

That said, it is interesting to note that the two types of massage therapy most often recommended for people with lipedema are at the opposite ends of the spectrum of intensity. On the one hand, lymph-focused techniques are frequently recommended for people who choose both noninvasive and surgical interventions. These techniques are feather-light, and work by way of inducing parasympathetic response and capillary dilation, which allows the movement of fluid out of congested areas. Clients find this deeply relaxing, and often report feeling lighter and more mobile after sessions.

And at the other end of the scale, instrument-assisted massage therapy turns up in the descriptions of work done by massage therapists as a successful intervention for some patients. This includes cupping, foam rollers, Graston technique, gua sha, and some other modalities—presumably to address fibrosis. This seems surprising, in light of the fact that many people with lipedema report a low pain threshold and easy bruising in their affected areas. But the discomfort of these interventions appears to be worth it to some patients who find that these techniques give them improved mobility and the reduction of symptoms.

“Lipedema is totally different in each person who has it. It requires a totally customized approach to treatment. That’s why massage is such a great fit: customized approaches are what we do.”—KL

If lipedema is as common as some experts suggest, then many massage therapists are probably already working with clients who have it in its early stages. Knowing more about this condition, and how to enlist the lymphatic system to assist in treating some of the symptoms—especially pain, congestion, and ease of movement—could make manual therapy even more helpful. Advanced education in lymphatic work is invaluable for this population.

I expect as the condition of lipedema continues to be explored and understood by the medical community, we will find increasing demand for our work. Affected patients look for coping strategies and ways to prevent their situation from getting worse, and many prefer to explore noninvasive interventions to manage their condition.

“If you announce that you specialize in lymphatic drainage on the internet, people find you from all over. There aren’t enough of us—we need more people in this tribe.”—KB

Perhaps one of the most important things massage therapists can bring to the quality of life for people who live with lipedema is our unconditional positive regard. Our culture already has deep-rooted and unpleasant prejudices about people who are overweight. In the two-part series on obesity that appeared in Pathology Perspectives (“Demystifying Obesity,” Massage & Bodywork, July/August 2018 and September/October 2018), we addressed some of these prejudices and the ways massage therapists can be aware and sensitive about how they communicate with and support their clients who are above average in size.

Because lipedema is so frequently mistaken and misdiagnosed for obesity, and because the typical interventions for obesity have virtually no impact on lipedema at all, it is easy to see how people with this condition can feel abandoned and disrespected by the medical community. If these clients are willing to come for massage (which could be painful both physically and emotionally), we owe them respect and appreciation for their courage. It is a privilege to work with people whose body image is so negatively affected by media messaging, but who still feel safe enough to be willing to receive our work.

Resources

Amann-Vesti, B. R., U. K. Franzeck, and A. Bollinger. “Microlymphatic Aneurysms in Patients with Lipedema.” Lymphology. December 2001.

Bertsch, T. et al. “Lipoedema—Myths and Facts, Part 5: European Best Practice of Lipoedema—Summary of the European Lipoedema Forum Consensus.” Phlebologie. 2020. Accessed October 20, 2020. https://doi.org/10.1055/a-1012-7670.

Brazier, Y. “Brown Fat: What Is It and Can It Help Reduce Obesity?” Medical News Today. March 2017. www.medicalnewstoday.com/articles/240989.

Buso, G., et al. “Lipedema: A Call to Action!” Obesity. October 2019. https://doi.org/10.1002/oby.22597.

Cleveland Clinic. “Health Essentials: Ladies, Here’s What You Should Know About Lipedema, a Condition That Causes Excess Fat in the Legs.” August 29, 2019. https://health.clevelandclinic.org/ladies-heres-what-you-should-know-about-lipedema-a-condition-that-causes-excess-fat-in-the-legs.

Cottier, C. “Your Fat Cells Never Disappear—Making Future Weight Gain More Likely.” Discover Magazine. January 15, 2020. www.discovermagazine.com/health/your-fat-cells-never-disappear-making-future-weight-gain-more-likely.

Cure Lipedema. “Manual Lymphatic Drainage Massage.” Accessed October 20, 2020. www.curelipedema.org/manual-lymphatic-drainage-massage.

Cure Lipedema. “Treatments: Liposuction.” Accessed October 20, 2020. www.curelipedema.org/tumescent-liposuction.

“Documents and Handouts.” Lipedema Treatment Guide. Accessed October 20, 2020. www.lipedematreatmentguide.com/index.php/documents-and-handouts.

Freudenrich, C. “How Fat Cells Work.” October 27, 2000. HowStuffWorks. https://science.howstuffworks.com/life/cellular-microscopic/fat-cell.htm.

Herbst, K. “Dercum’s Disease.” NORD. Accessed October 20, 2020. www.rarediseases.org/rare-diseases/dercums-disease.

Lipedema Foundation. “About Lipedema.” Accessed October 20, 2020. www.lipedema.org/about-lipedema.

Lipedema Foundation. “For Physicians: About Lipedema.” Accessed October 20, 2020. www.lipedema.org/physicians.

Lipedema Project. “Treatment for Lipedema.” Accessed October 20, 2020. www.lipedemaproject.org/treatment-for-lipedema.

Lisson, K. Massage Therapist’s Guide to Lipedema. July 2018. www.lipedematreatmentguide.com/wp-content/uploads/2018/07/MASSAGE-THERAPISTS-GUIDE-TO-LIPEDEMA-By-Kathleen-Lisson-CLT-July-2018-1.pdf.

Meszaros, L. “Can You Increase the Body’s ‘Good Fat?’ ” MDLinx. August 19, 2019. www.mdlinx.com/article/can-you-increase-the-body-s-good-fat/lfc-4209.

Moyer, M. W. “Supercharging Brown Fat to Battle Obesity.” Scientific American. July 15, 2014. https://doi.org/10.1038/scientificamerican0814-30.

Peled, A. W. and E. A. Kappos. “Lipedema: Diagnostic and Management Challenges.” International Journal of Women’s Health. February 11, 2016. https://doi.org/10.2147/IJWH.S106227.

Pereira de Godoy, J. M., et al. “Lipolymphedema Associated with Idiopathic Cyclic Edema: A Therapeutic Approach.” Case Reports in Vascular Medicine. August 23, 2017. https://doi.org/10.1155/2017/5470909.

Reich-Schupke, S., et al. “S1 guidelines: Lipedema.” Journal of the German Society of Dermatology. July 4, 2017. https://doi.org/10.1111/ddg.13036.

Stevens, A. P. “The Color of Body Fat Might Affect How Trim People Are.” Science News for Students. October 10, 2019. www.sciencenewsforstudents.org/article/body-fat-color-white-brown-beige-health-hibernation-energy.

Tchoukalova, Y. D., et al. “Regional Differences in Cellular Mechanisms of Adipose Tissue Gain with Overfeeding.” Proceedings of the National Academy of Sciences of the United States of America. October 19, 2010. https://doi.org/10.1073/pnas.1005259107.

Torre, Y., et al. “Lipedema: Friend and Foe.” Hormone Molecular Biology and Clinical Investigation. March 9, 2018. https://doi.org/10.1515/hmbci-2017-0076.