Could You Have Lipedema?

February 4, 2016

Lipedema May Increase Obesity in Women

Fat on the outside of the body is called Subcutaneous (beneath the skin) Adipose Tissue (SAT). Increased SAT around the hips, buttocks and thighs is gynoid obesity; excess abdominal SAT is common in men and is called android obesity.   Android obesity increases the risk for metabolic complications including diabetes, whereas gynoid fat is protective.

Classically, SAT increases on the body in response to lifestyle situations including excess energy (food) intake and decreased energy output (movement). Even if difficult, lifestyle-induced SAT can be lost after lifestyle improvement, or bariatric surgery. However, abnormal SAT can be absolutely unresponsive to extreme lifestyle changes or even bariatric surgery. This abnormal SAT can be found in unexpected locations or in dramatically increased amounts in a number of different SAT disorders.(1) One of the most common lifestyle-resistant SAT disorders is lipedema, which likely affects millions of women.(2)   Lipedema tends to develop at the time of puberty, pregnancy or the menopause transition when the female hormone estrogen is high (Table 1).(3)  Men can develop lipedema if they have low testosterone levels and/or higher estrogen levels, both of which can occur with obesity or liver disease.

Lipedema's Different Stages

Lipedema means edema or fluid in the fat tissue and occurs in the gynoid distribution though 80% of women with lipedema also have affected arms; the hands, feet, trunk and face are usually spared (Figure 1).   Women with lipedema are at risk for eating disorders as no matter how much they diet or exercise, the SAT on their buttocks, hips and legs remains. Psychological upset is common in lipedema as healthcare providers unfamiliar with this disorder go on to recommend further lifestyle restrictions. Women with lipedema can go on to develop obesity SAT in initially unaffected areas including on the scalp resulting in hair loss (alopecia).(4) When obesity develops alongside lipedema, women are at great risk for developing diabetes and other negative metabolic changes and the SAT everywhere becomes difficult to lose. These women are also at risk for not knowing they have lipedema and missing out on treatment options (see below).

The skin and SAT have characteristics in lipedema that are described as stages.

In Stage 1, the skin is smooth despite an increase in SAT tissue that can extend all the way down to the ankle forming a cuff despite a normal appearing foot.

In Stage 2, the fibers between lobules of SAT enlarge and contract causing dimpling or a mattress appearance in the skin.

In Stage 3, the SAT enlarges further and the skin and SAT can fold over forming lobules (Figure 1).

In all stages, the fat has small nodules in it the size of a rice grain or frozen peas.   These same nodules can occur near lymph nodes especially at the elbow and inner knee when obesity is present suggesting the excess fat disturbs the lymphatic system.

Lymphatic vessels have smooth muscle cells that pump fluid, immune cells, protein, and cell waste out of tissues, like the garbage collector of a city; if you do not remove the trash, the city suffers. The lymphatic system is challenged by excess SAT of any kind. In lipedema, the lymphatic vessels initially pump fluid out of SAT at a higher rate; later, lymphatic flow becomes sluggish, and finally the lymphatic vessels develop aneurysms (weak areas) and leak at which point lymphedema develops.

Failure of fluid to be pumped out of the tissue by lymphatic vessels results in a low oxygen state (hypoxia) because the excess fluid moves tissue cells further from their oxygen source (blood vessels). During hypoxia, adipose cells secrete “help” signals that recruit inflammatory cells which in turn increases the inflammatory load of the body. The end result of inflammation is fibrosis or scar in the tissue. Excess fluid in the tissue also weakens the outer layer (basement membrane) around blood vessels where capillaries become fragile and break causing bruising and varicose veins. Venous disease can also cause result in edema. Anyone with edema in SAT should seek the help of a healthcare provider to determine the cause.

Lymphatic Dysfunction

Lymphatic dysfunction can occur in people with obesity, or have been obese, in the absence of lipedema. Development of an infection of the skin and tissue called cellulitis may be a marker of underlying primary lymphatic dysfunction in people with obesity who have not yet developed lymphedema.(5)   Cellulitis requires treatment with antibiotics. Lymphedema may also develop in obesity secondary to SAT compression of lymphatic vessels or the vessels may become overworked as in lipedema.   This may be especially true in people with poor elasticity (bounce back) in the skin of which stretch marks can be a sign.

SAT tissue should be light and fluffy, not heavy. When the tissue becomes heavy with fluid as in lipedema, it stretches away from the body forming a fat lobe. When lipedema is present, SAT lobules are pathognomonic for stage 3 lipedema (Figure 1). The apron of fat at the lower part of the abdomen is also an example of a fat lobule. Over time, fat lobules become heavier and larger and in the case of the apron of fat, can compress lymph nodes in the groin (top of the leg) resulting in further lymphatic dysfunction and edema of the legs. This stagnant fluid is rich in protein, cell waste and nutrients and can make SAT grow.(6)

While it can be difficult to diagnose lipedema when obesity is present, there are some significant differences between people with pure lipedema versus obesity alone (Table 1). Pain in the lipedema SAT is one distinguishing characteristic and can be mistaken as growing pains in young girls with lipedema at the time of puberty.

When lymphatic dysfunction is present, it is of utmost importance to undergo the proper treatment to help move the fluid out of the SAT and back into the venous system where the fluid can be discharged through the kidneys as urine. Lowering the fluid in the tissue will also reduce SAT growth. These treatments are as follows:

1. Manual lymphatic drainage (MLD) - administered professionally by a physical, occupational or massage therapist. If you have a significant amount of lymphedema or there is fibrosis in the SAT, your therapist may wrap the legs to improve the tissue before recommending compression garments. Your therapist should have certification and training. You can find a therapist using the cell phone app: LOOK4LE
2. Self MLD – your therapist should treat you and a friend or family member how to help you perform self MLD daily.
3. Skin brushing – helps improve blood flow into tissue and increases lymphatic pumping with each stroke. Your MLD therapist should help teach you this technique though there are good videos on the internet.
4. Home exercise program (HEP) – muscle contraction improves lymph flow therefore exercises that cause muscle contraction all over the body such as walking with walking poles or whole body vibration that improves peripheral circulation(7,8) and increases lymph flow.(9) Times on the unit can range between 5-30 minutes.
5. Nutrition - avoidance of processed carbohydrates and simple starches reduces insulin levels and therefore the drive for new SAT tissue.

There are also supplements and medications that can improve lymphatic vessel pumping but these should be taken in conjunction with a medical provider.

If lipedema SAT is present with obesity, or obesity has led to the development of lymphedema, the above treatments can improve outcomes after bariatric surgery. Tissues become catabolic (break down) after bariatric surgery and can overload a struggling lymphatic system resulting in the development or worsening of lymphedema. When this happens in lipedema, it is called lipolymphedema. The lymphedema can worsen over time inducing more SAT growth, requiring the use of diuretics and even oxygen therapy, all of which can be prevented. Development of fibrosis in the SAT also decreases the chance to lose weight after bariatric surgery.(10)

Figure 1: Three stages of lipedema.

Stage 1, has smooth skin but increased subcutaneous adipose tissue (SAT) on the leg but not on the foot; notice the cuff of fat at the ankle.

Stage 2, has dimpling of the skin.

Stage 3, has lobules of fat (arrows). Note also the disproportion between the upper and lower body and that the upper arms have increased lipedema SAT.

Table 1. Comparison of lipedema and obesity.
	Lipedema	Obesity
Proportionate SAT	No; lower > upper body	Yes; abdominal obesity
Painful SAT	Yes	No
Palpation of SAT	Nodular	Smooth
Easy bruising	Yes	No
Foot SAT	No	Yes
Time of development	Puberty, pregnancy or menopause in the absence of lifestyle changes	Any age associated with lifestyle changes
Ability to lose weight	Not lipedema SAT	Yes
Known genes	Unknown but under study	Many

If you think you have lipedema or lymphedema, you can learn more at the following websites:

• lipomadoc.org
• fatdisorders.org
• lymphnet.org

---

References

1. Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacol Sin 2012;33:155-72. doi: 10.1038/aps.2011.153.
2. Foldi E, Foldi M. Lipedema. In: Foldi M, Foldi E, eds. Foldi's Textbook of Lymphology. Munich, Germany: Elsevier GmbH; 2006:417-27.
3. Woods NF, Mitchell ES, Smith-Dijulio K. Cortisol levels during the menopausal transition and early postmenopause: observations from the Seattle Midlife Women's Health Study. Menopause 2009;16:708-18. doi: 10.1097/gme.0b013e318198d6b2.
4. El Darouti MA, Marzouk SA, Mashaly HM, et al. Lipedema and lipedematous alopecia: report of 10 new cases. Eur J Dermatol 2007;17:351-2. Epub 2007 Jun 1.
5. Damstra RJ, van Steensel MA, Boomsma JH, Nelemans P, Veraart JC. Erysipelas as a sign of subclinical primary lymphoedema: a prospective quantitative scintigraphic study of 40 patients with unilateral erysipelas of the leg. Br J Dermatol 2008;158:1210-5. doi: 10.111/j.365-2133.008.08503.x. Epub 2008 Mar 20.
6. Schneider M, Conway EM, Carmeliet P. Lymph makes you fat. Nat Genet 2005;37:1023-4.
7. Lohman EB, 3rd, Petrofsky JS, Maloney-Hinds C, Betts-Schwab H, Thorpe D. The effect of whole body vibration on lower extremity skin blood flow in normal subjects. Med Sci Monit 2007;13:CR71-6.
8. Kerschan-Schindl K, Grampp S, Henk C, et al. Whole-body vibration exercise leads to alterations in muscle blood volume. Clin Physiol 2001;21:377-82.
9. Stewart JA, Cochrane DJ, Morton RH. Differential effects of whole body vibration durations on knee extensor strength. J Sci Med Sport 2009;12:50-3. Epub 2007 Dec 19.
10. Sun K, Tordjman J, Clement K, Scherer PE. Fibrosis and adipose tissue dysfunction. Cell Metab 2013;18:470-7. doi: 10.1016/j.cmet.2013.06.016. Epub Aug 15.

ABOUT THE AUTHOR Dr. Karen L. Herbst, MD, PhD is a board-certified endocrinologist and medical authority on Lipedema. She is one of the world’s leading researchers for connective tissue disorders, and she specializes in working with patients who have problems with their fat (connective tissue). You may recognize her as the research physician on Mystery Diagnosis, featuring a man with Dercum’s Disease (The Man with 1000 Lumps). She continues her passion for helping people with connective tissue disorders as part of Total Lipedema Care. Read more articles by Dr. Herbst!

---