Why I am Interested in Lipedema

Why Learn About Lipedema?

by Kathleen Lisson
Certified Lymphedema Therapist
ACE Certified Personal Trainer

I was fresh out of massage school and had only been a certified massage therapist for a few months when she came in for her first appointment. She was tall, blonde and, at 16 years old, had booked her first massage ever with her mother’s permission at the day spa where I worked. She shyly told me she enjoyed playing several sports but had not been able to diet away a layer of tissue that had started to accumulate on her legs.

She’s not the first person to ask me if massage can either help with weight loss or reduce cellulite, but this was something different. I remember noticing something unusual at her ankles. Her calves ended abruptly at the top of her foot, almost like she was wearing a pair of thin leggings. I knew from my oncology massage class that there was a condition called lymphedema, but this was different. I made a mental note to look back into my textbooks and see if I could figure out what was going on. For weeks I hoped she would come back for another massage, but I never saw her again. It’s been a few years, and knowing what I know now, I wish I could have suggested she do an internet search for the word ‘lipedema.’

For many women, lipedema adipose tissue starts appearing at puberty and may increase with childbirth and menopause. It is not reduced by diet and exercise, but women can spend decades trying to lower their weight in vain, desperately wondering why no diet or exercise regime ever works for them. The average woman is in her forties when she is finally diagnosed.

I breaks my heart that I was unable to help that innocent, shy blonde girl that came to me for her first massage. I have spent time over the past months giving presentations around San Diego to raise awareness about the adipose tissue disorder called lipedema, in the hopes that the men and women I speak to will be able to see it in their friends or family and help the women they love avoid years of frustration and thousands of dollars trying diets and exercise programs that will not remove the lipedema tissue on their legs, thighs and buttocks.

Is Lipedema Genetic?

Is Lipedema / Lipoedema Genetic? 

by Kathleen Lisson

Certified Lymphedema Therapist

ACE Certified Personal Trainer

Scientists have not found a genetic link yet, but 74% of the women surveyed in the The Lipoedema UK Big Survey stated that they “suspect other members of their family have/had lipoedema without being diagnosed” (Fetzer & Fetzer, 2016).  There may be a hormonal component, because symptoms may worsen after puberty, birth control, childbearing and menopause.

It's worth asking the client with lipedema if anyone in her family has a similar body type. Old family photos can also provide clues.

Research:

Fetzer A. & Fetzer S. (2016). Lipoedema UK Big Survey 2014 Research Report Report. Lipoedema UK.

Retrieved from http://www.lipoedema.co.uk/wp-content/uploads/2016/04/UK-Big-Surey-version-web.pdf

Lipoedema Treatment Guide from Wounds UK

'Best Practice Guidelines, The management of lipoedema' - 

Lipoedema Treatment Guide from Wounds UK

by Kathleen Lisson, CLT

Wounds UK has a phenomenal guide for practitioners on treating lipoedema. 'Best Practice Guidelines, The management of lipoedema' shares information on diagnosis and treatment of lipedema with extra focus on vascular issues and overall holistic healing of lipedema.

Read the guide here: http://www.lipoedema.co.uk/wp-content/uploads/2017/05/WUK_Lipoedema-BPS_Web.pdf

A Personal Trainer’s Guide to Lipedema

A Personal Trainer’s Guide to Lipedema

by Kathleen Lisson, CLT

“I can’t seem to lose weight on my legs, no matter how much I diet.”

“I can’t find clothes to wear - I am different sizes on the top and bottom.”

“My family tells me I have my grandmother’s legs.”

Has a client ever come to you with these complaints? If so, she may be suffering from lipedema, an adipose tissue disorder thought to affect around ten percent of the female population in America. Lipedema was first described by Doctors Allen and Hines of the Mayo Clinic in 1940. Almost 80 years later, the condition is often mistaken for obesity and not well known in the medical community. For many women, lipedema tissue starts appearing on the butt, thighs and calves at puberty. Childbearing and menopause may also bring an increase in this type of tissue.

What makes lipedema tissue different from other adipose tissue? It is extremely resistant to diet and exercise.

These facts set up the perfect storm for our client. She may have been suffering since childhood with tissue on her lower body that will not respond to diet and exercise and all to often, advice from her health professionals, well meaning friends and family is just to diet and exercise. This is where you can make a difference! Movement and mind-body practices can help her to live a healthy life.

What is Lipedema?

Lipedema is a word used to describe an adipose tissue disorder that is characterized by:

• Excess adipose tissue that collects on the lower half of the body.

• Tissue that collects on both left and right equally.

• The lower body looks much larger than the upper body.

• The feet are spared, which gives the ankles a ‘cankle’ or pantaloon appearance.

• In 15 - 45% of cases, a family member is also affected.

• Skin may feel smooth or underlying tissue may have a nodular or beanie baby like feeling and in extreme cases feel like a walnut shell.

• Joint hypermobility may be present.

• Lipedema can also affect the upper arms.

• There is pain in the affected area when pressure is applied and legs bruise easily.

Lipohypertrophy sometimes looks the same as lipedema, but the pain that happens with lipedema is not present.

How can personal trainers help clients with lipedema?

Exercise will not reduce lipedema tissue, but movement throughout the day is essential for maintaining health. Exercises that support the lymphatic system for lipedema clients include:

• Aerobics focused on joint movement

• Cycling

• Dancing and other rhythmic whole body exercise that is easy on the knee joints

• Deep breathing

• Elliptical machine

• Lymphatic yoga

• Pilates

• Stretching

• Swimming

• Tai Chi and Qi Gong (minimize deep knee bends)

• Walking

• Water Aerobic exercises

• Weight lifting and bodyweight exercises with exercise bands

Intense exercise may increase swelling in these clients, and personal trainers and coaches should be sure to emphasize that these exercises will not reduce or cure lipedema.

Often, the most valuable thing we can say to our client on that first visit is that she is not crazy and it is not her fault. She will likely have tried and failed to diet away the weight for years if not decades. Diet and exercising may have resulted in changes in her upper body but no reduction in her lower body. If she cannot undergo liposuction treatment to remove lipedema tissue, giving her the tools and support she needs to add healthy exercise to her life, combined with conservative treatments like compression garments, dry brushing, manual lymphatic drainage massage, pumping and vibration may make it easier for her to live with lipedema.

Further Resources:

More information on vitamins and supplements for lipedema: http://treat.medicine.arizona.edu/sites/treat.medicine.arizona.edu/files/medicine-and-supplements-handout-fdrs-2016_without_color.pdf

Photos of lipedema from the Lipedema Foundation: https://www.lipedema.org/photo-gallery

List of medical professionals that treat lipedema patients from The Lipedema Project: http://lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/

Lipedema Information for Nurses

Nurses: Diagnostic Information for Lipedema

by Kathleen Lisson, CLT

This article 'Lipedema: A Frequently Misdiagnosed and Misunderstood Fatty Deposition Syndrome' from 'Advances in Skin & Wound Care' is a great resource with photographs and information describing lipedema. The paper also provides differential diagnosis information for lipedema / lipoedema / lipoedeem.

Access the paper here: Lipedema: A Frequently Misdiagnosed and Misunderstood Fatty Deposition Syndrome  http://lipedemaproject.org/wp-content/uploads/2016/02/2010_Fife_Lipedema-A-Frequently-Misdiagnosed-and-Misunderstood-Fatty-Deposition-Syndrome.pdf

What Does Lipedema Pain Feel Like?

What does Lipedema Pain Feel Like? 

by Kathleen Lisson
Certified Lymphedema Therapist
ACE Certified Personal Trainer

A study published in 2008 and conducted in Germany sought to gain a better idea of exactly what 'pain' with lipedema feels like. In 'Pain with lipoedema Attempt to approximate' researchers W. Schmeller, I. Meier-Vollrath Capio from the Hanse-Klinik, Department of Liposuction and Operational-Aesthetic Dermatology, Lübeck, Germany asked 50 patients with stage 2 lipoedema to complete a questionnaire.

The results? Pain was described as "pressing and dull," as well as "severe, tearing, nagging, unnerving, fierce, unbearable, exhausting, and sharp." A very interesting finding was that when allowed to use their own descriptions of pain, "the complaints were often described as being very pronounced." This may mean that we as health professionals are not getting the best idea of how pain is affecting our clients with lipedema if we rely on pre-selected words to describe pain. We may do a better job at getting an accurate picture of the pain of lipedema if we let out clients describe the pain in their own words and phrases.

The study document also has a list of words and terms that the lipedema clients used to describe their pain to help us get a better idea of what the experience may be for our clients.

Read more about the study here:
https://static1.squarespace.com/static/5775899ac534a5e813c050db/t/58d3d673b8a79b27eb30aa26/1490278004395/LymphForsch_12_2008_EN+revised+2.pdf

Here is a doctor's advice on speaking to clients with lipedema about their pain.

Supplements for Lipedema

Lipedema Supplement List

by Kathleen Lisson, CLT

Can supplements help treat lipedema? Dr. Karen Herbst has compiled a list of herbs, vitamins, nutrients and supplements that may help ladies with lipedema / lipoedema / lipoedeem symptoms. Dr. Herbst also indicated that these supplements may be helpful for Dercum's disease as well. According to the college of Medicine Tucson's 'Treatment, Research and Education of Adipose Tissue' program (TREAT), these supplements work to help reduce lipedema symptoms in four ways:

• Improve lymphatic pumping
• Reduce leakage from vessels, 
• Reduce inflammation 
• Support the immune system

The list is here: http://treat.medicine.arizona.edu/sites/treat.medicine.arizona.edu/files/medicine-and-supplements-handout-fdrs-2016_without_color.pdf


Personal Trainers: Analyzing the medication information from a personal training client with lipedema can be complex! Click on the link above to find out why a person with lipedema / lipoedema / lipoedeem may be taking supplements.

Dutch Lipoedema Guidelines

Dutch Lipoedema Guidelines

by Kathleen Lisson, CLT

One frustrating part of learning about lipedema is that it is much better known in Europe than in America. Luckily, many documents have been translated into English. One very detailed document providing plenty of information in lipedema / lipoedema / lipedeem is the Dutch Lipoedema Guideline. 

Read the Dutch Lipoedema Guideline here: https://diseasetheycallfat.tv/wp-content/uploads/2015/08/Dutch-lipoedema-guideline-2014.pdf