“It all started in menopause. The weight started to come on gradually, primarily in my arms and legs, and I couldn’t seem to get it to go away. I tried everything. I eat a super clean diet and I work out religiously. The weight barely budges. I feel like something is wrong with me. I just don’t understand it!”

I hear this and similar stories from patients pretty regularly, with slightly different renditions. Sometimes it starts in puberty. Sometimes body pain is the chief concern. Although it isn’t always lipedema, I have to ask myself – could it be?

According to the National Institutes of Health, 68.8% of the United States is overweight and 35.7% are considered to be obese and the numbers are rising. Obesity is not just one condition, however. It has different causes.  Lipedema, Dercum’s disease, Madelung’s, and Familial Multiple Lipomatosis are 4 specific examples, but lipedema in particular appears to be far more common.

Lipedema is an under-recognized condition that may affect as many as 11% of women according to lipedema expert, Dr. Etelka Földi. One of its striking features is that the fat, primarily in the lower extremities, does not go away despite very good diet and exercise habits.

Other symptoms often include body pain or hypersensitivity, easy bruising, joint pain, and reduced mobility.

Weight loss can be challenging for many people who do not have this condition and there can be many reasons for this. Metabolic abnormalities, thyroid dysfunction, gut bacteria, sleep, stress, genetics, the right diet for you, the right macronutrient ratios for your exercise and lifestyle, nutrient timing, and more can play into this. So how do you know if you have lipedema?

Diagnosis

If you’re surprised you haven’t heard of this condition, don’t be. Many doctors don’t know about it either. Diagnosis can be tricky as well because there is not a specific test that can be done to confirm the diagnosis, and although there are imaging techniques that can show certain characteristics of the disease, these are primarily done in a research setting.

Besides ruling out other causes for weight loss challenges like those mentioned above, there are certain features that define this condition, separating it from others that may present similarly.

• Fat distribution – The fat is symmetrically distributed and is primarily in the legs, sometimes in the arms, while sparing the hands and feet. There can be a fairly definitive “cuff” line at the ankles where the fat stops. However, if there is also a problem with the lymphatic system on top of lipedema, there can be swelling in the feet as well known as lymphedema.
• Little change with diet and exercise – As previously mentioned, an important characteristic is that people who are very compliant to a healthy diet and who exercise regularly will have minimal fat loss, particularly on their legs. Diet and exercise are still incredibly important to help prevent further progression of the condition and, of course, for the other health benefits.
• Onset with hormonal change – Most women report lipedema becoming an issue after a major hormonal change such as puberty or menopause. One theory is that these hormones cause changes to how the person’s DNA is expressed called epigenetic changes.
• Pain/Tenderness – Patients with lipedema often report pain or hypersensitivity in the affected areas. This is frequently the most bothersome symptom for the patient.
• No change with foot elevation – If the swelling decreases when you elevate your feet, it is either not lipedema or lymphedema is also present.

A few things we know…

Lipedema appears to have a genetic component, especially when including only females, but we do not yet know the extent genetics play a role or which genes are involved.

Lipedema pathophysiology (the way it happens) likely involves problems with the fat cells (adipocytes) themselves but also the lymphatic system, vascular system, hormonal influences, and inflammation, but more research is needed to better understand how and why these changes happen.

Treatment

Conservative treatments include a foundation of a healthy diet and complete decongestive therapy (CDT). CDT involves manual lymph drainage (a type of massage by specialist trained to address the lymphatic system), compression bandaging/clothing, skin and nail care, and therapeutic exercises. Compression clothing is a very important component of treatment for preventing new accumulation of fluid in the tissue.

Conservative treatment should be done first, but there are surgical treatment options available such as liposuction that can also make a big difference in quality of life and symptoms in certain cases.

For more information: The Lipedema Project or see a health professional.

The content of this article is for educational purposes only and is not intended to diagnose or treat any condition.

This article was originally published on the Whole Health blog.

Works Cited

Setting the Research Agenda for Lipedema: Step Towards a Cure. The Lipedema Project. New York City : The Friedman Center for Lymphedema Research and Treatment, 2015.

Diseases, National Institute of Diabetes and Digestive and Kidney. Overweight and Obesity Statistics. National Instite of Health. [Online] US Dept of Health and Human Services, October 2012.