By Melinda Young
EXECUTIVE SUMMARY
Millions of women live with lipedema, a bilateral loose connective tissue disorder. Too few clinicians diagnose the disease — and too few women know they have it.
- People with lipedema often experience chronic pain and a disproportionate buildup of subcutaneous adipose tissue in their hips, buttocks, thighs, and legs.
- Lipedema can result in bilateral swelling and cuffing, where the tissue cuffs like a bracelet above the ankle, wrist, or elbow.
- As case managers work with patients who show signs of lipedema, there could be an opportunity to connect them to their physician for a lipedema evaluation.
The loose connective tissue disorder lipedema affects more than 17 million women nationwide. Many people experience chronic pain and comorbidities without knowing they have the disease.1
Unlike lymphedema, which can affect one side of the body, lipedema is bilateral. And unlike obesity in general, lipedema is a disproportionate buildup of subcutaneous adipose tissue primarily in the hips, buttocks, thighs, legs, and sometimes in the arms. Common comorbid conditions include hypermobile joints, lymphedema, non-lipedema obesity, and vascular disease.1
Learning more about lipedema and the problems it causes could help clinicians and case managers educate patients on what they can do to prevent mobility impairment and other debilitating consequences of the disorder.
“I have lipedema and lived for decades without knowing I had this chronic condition,” says Michelle Luce, MSN, RN, CCM, founder and chief executive officer of Lipedema Health in Chalfont, PA. Luce also is the former president of the Mid-Atlantic Case Management Society of America chapter, and she speaks about lipedema at national conferences.
Luce experienced chronic and often immense pain. Just touching her skin hurt. She took ibuprofen and saw several doctors. But it was years before she was diagnosed. In addition to pain, the disorder caused Luce’s body to develop nodules. Her lower extremities became large and lumpy.
Lipedema also causes cuffing, where the tissue cuffs like a bracelet effect. It stops abruptly above the ankle, wrist, or elbow.
“The fat is abnormal tissue, totally different from other fat,” Luce says. “It’s resistant to diet, exercise, and even bariatric surgery.”
Women with the disorder have disproportionate body shapes. Their waists could be near normal, but their legs are very heavy. They may also feel or see lumps under the skin.
“What happens is somehow underneath the skin, these tiny nodules or lipomas form, and they’re hardened and proliferate through the body,” Luce says. “It’s scary. You can feel it.”
One of the oddities of lipedema is that patients in the early stages of the disease may appear metabolically healthy with normal blood glucose levels. Usually, they do not have diabetes or high blood pressure. The condition appears to affect women during stages of hormonal change, including puberty, pregnancy, and menopause.1,2
Greater Awareness Needed
Case managers and clinicians need to be aware of the disease because it can lead to patients becoming disabled as their legs fill with nodules, making it difficult to walk and perform activities of daily living.
The disorder can occur with comorbidities of fibromyalgia, lymphedema, Ehlers-Danlos syndrome, and obesity. It also is linked with arthritis of the knees, vascular disease, and polycystic ovary syndrome, Luce says. “A lot of women with lipedema have hypermobile joints,” she adds.
Patients with lipedema and lymphedema have fluid backed up in their tissue, and lymphatic tissues are damaged. Lipedema results in bilateral swelling, Luce explains. “If a doctor is going to assess for lipedema and lymphedema, the distinguishing characteristic is that lipedema is bilateral with symmetrical swelling; lymphedema could be in one arm or one leg,” she says. “Recognize the signs and symptoms, and if patients are diagnosed with obesity, or had undergone bariatric surgery, or maybe had fibromyalgia, recognize this as potentially a first indicator of the disorder. They need to get to a doctor to be diagnosed and help slow the progression.”
Many physicians are unaware of the condition or may be hesitant to make a diagnosis since there are no blood or tissue tests that can be a red flag for lipedema. It is reliant on a physical exam, symptoms, and medical history. Symptoms, in addition to pain and nodules, include easy bruising and fatigue. In advanced cases, a person’s legs become distorted with enlarged calves and thighs but normal-sized feet.
While the condition is not rare, it is difficult to obtain a proper diagnosis. To improve diagnosis and treatment, Lipedema Health is enrolling people in a pilot study called Your Path to Diagnosis.1
“They should start with a family doctor, but if they’re not getting an answer, they should seek counsel with a vascular surgeon and a medical doctor to get a diagnosis,” Luce says.
For case managers, recognizing the abnormal type of fat may be easy, but addressing this with patients can be sensitive. “You might notice there are nodules, they’re overweight, and they’re having activity issues with chronic pain,” Luce says. “Connect the dots, and you could say, ‘Mary, I notice you have nodules under your skin, and you seem to be having pain. Are you seeing a pain specialist? What is your doctor doing about it?’”
As case managers work with patients to create patient-centered goals, there could be an opportunity to note other potential diagnoses for what the patients are experiencing. “Somehow, connect them back to their doctor to get an evaluation for lipedema,” Luce says.
Lipedema Health is developing diagnostic tools for clinicians, including a health risk assessment tool called Individual Lipedema Early Assessment and Discovery. There also is a case manager checklist with assessment questions related to medical history, diagnosis, current symptoms and challenges, treatment history, lifestyle and daily habits, psychosocial well-being, support systems, goals, and other considerations.3
While there is no cure for lipedema, there are lifestyle changes that can help slow its progression and ease pain. In some cases, surgery can help with pain. Treatment includes light to moderate exercise, compression therapy, lymphatic drainage, and an anti-inflammatory diet.1
Depression, Anxiety Are Common
Patients with lipedema also may experience depression and anxiety. They are unable to do anything to lose the fat in their extremities. As often happens, Luce blamed herself for the abnormal weight gain. Before she was diagnosed, Luce began a 1,200-calorie-per-day diet for a year and exercised regularly. She stayed disciplined and watched what she ate, and yet she lost only eight pounds over the year. Even more concerning, Luce’s calves continued to grow despite the weight loss. Their measurements went from 15 inches to 18.5 inches.
“Then, I knew I needed help,” Luce recalls. “I was exercising and using this diet app to track my food. I wanted to get healthy and lose weight, and it was not working.”
Luce saw a video of a woman with lipedema and realized that her experience mirrored that woman’s story. Luce visited her family physician and pursued a vascular medicine consult. The specialist diagnosed her with lipedema, and they pursued ways to stop the progression of the disorder.
Luce tried using compression hose but found that did not work well. Ultimately, Luce pursued lipedema reduction surgery, undergoing three procedures. “They took out four liters of fat from each procedure,” she says.
The Lipedema Health website shows photos of her legs before and after surgery. A year later, Luce found that the weight has crept up a little, but her mobility is restored, she is largely pain-free, and she exercises four or five days a week.
Luce founded Lipedema Health because of her own experience with the disorder and because she wants to draw attention to the misdiagnosed and underdiagnosed disease. Luce wants to improve the quality of life for people diagnosed with lipedema.
“I’m doing what I can to bring innovative tools to accelerate the diagnosis process,” Luce says. “Let’s diagnose it in stage one, where someone could use compression therapy or compression hose, diet, and exercise to slow the progression. The goal is to prevent fluid from building up.”
REFERENCES
- Lipedema Health. Lipedema Resource Toolbox. 2024. http://www.lipedemahealth.com
- Lipedema Foundation. Clinician’s Guide to Lipedema. January 2024. https://www.lipedema.org/clini...
- Lipedema Health. Case manager checklist. 2024. https://static1.squarespace.co...
Millions of women live with lipedema, a bilateral loose connective tissue disorder. Too few clinicians diagnose the disease — and too few women know they have it. As case managers work with patients who show signs of lipedema, there could be an opportunity to connect them to their physician for a lipedema evaluation.
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