Signs and Symptoms of Lipedema for the Personal Trainer

What Does Lipedema Look Like?

by Kathleen Lisson
Certified Lymphedema Therapist
ACE Certified Personal Trainer


According to the monograph Lipedema - The disease they call FAT: An overview for clinicians, lipedema is a word used to describe an adipose tissue disorder that is characterized by excess fat that collects on the lower half of the body except the feet. Ladies with lipedema are pear shaped and the lower body looks much larger than the upper body, almost like the top half of the person doesn’t belong on the bottom half and vice versa. The feet are not affected, which can give the ankles a ‘cankle’ like appearance or the legs a ‘pantaloon’ like appearance. Lipedema can also affect the upper arms. If a lady with lipedema loses weight through dieting, the majority of the weight will come from the upper half of her body, making her look even more bottom-heavy (Dayan et al, 2017).

A simple Google search for 'Lipedema Photos' brings up dozens of examples of the condition.

Interestingly, a lot of ladies with lipedema also have hypermobility. Sometimes the Beighton Score is used to determine how hypermobile a person is. Learn more about hypermobility here: http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/ Women with lipedema may also bruise very easily. Lipedema tissue can impair one’s ability to walk easily and comfortably, with lipedema tissue collecting in a mass below the knee, filling the retromalleolar sulcus by the Achilles’ heel and creating a medial knee fat pad and lateral malleolus fat pad. Ladies with lipedema may have knock knees (Genu Valgus) and flat feet (Pes Planus) (Dayan et al, 2017).

This video shows the Types of Lipedema:

Resources:

Dayan, E., Kim, J.N., Smith M.L., Seo, C. A., Damstra, R.J., Schmeller, W. Frambach, Y., Carmody, M.A. Foldi, E., & Rockson, S. G., (2017). Lipedema - The disease they call FAT: An overview for clinicians. Boston MA: Lipedema Simplified Publications, The Friedman Center for Lymphedema Research and Treatment at The Center for Advanced Medicine at Northwell Health in collaboration with Lymphatic Education & Research Network (LE&RN).

Self-compassion for body image - two studies

How to Help Negative Body Image in Clients with Lipedema

by Kathleen Lisson, CLT

One crushing side effect of lipedema, especially at later stages, is negative body image. America is a society in which many people accept fat shaming and think that obesity is a result of laziness, poor life choices and lack of willpower. Many American women internalize these beliefs. Ladies with lipedema have often tried for decades to lose weight from the lower half of their body without any positive results. I would like to share two studies that show that meditation and self-compassion can help counter the negative body image messages that our society in America accepts as true.

First Study

Self-Compassion and Body Dissatisfaction in Women: A Randomized Controlled Trial of a Brief Meditation Intervention by Ellen R. Albertson & Kristin D. Neff & Karen E. Dill-Shackleford

This study enlisted "women with body image concerns" to simply listen to self-compassion meditation audio recordings to see if this exposure would increase self-compassion and improve body image concerns. 228 adult women participated in the study and participants listened to three weeks of self-compassion meditation training podcasts or were assigned to the waitlist. Five variables were studied: self-compassion, body dissatisfaction, body shame, body appreciation, and contingent self-worth based on appearance.

Mindfulness practices used included a "Compassionate Body Scan," "Affectionate Breathing," and a loving kindness meditation that includes the phrases "May I be safe. May I be peaceful. May I be kind to myself. May I accept myself as I am."

Find the study here:
https://www.psychologytoday.com/sites/default/files/attachments/30298/mindfulness-2014-albertson-neff-shackleford.pdf

Find the meditations here: http://self-compassion.org/category/exercises/

Try the self-compassion scale here: http://self-compassion.org/test-how-self-compassionate-you-are/


Second Study

Brief self-compassion meditation training for body image distress in young adult women by Aubrey M. Toole, Linda W. Craighead

This study tested the effects of self-compassion meditation intervention, shortening the length of time from three weeks to just one week. This study focused on college-aged female participants with no meditation practice and included an initial in-person session in the laboratory to answer the participants questions, then access to podcasts for a week-long period.

According to the study, self-compassion is defined as three intertwined elements - "mindfulness, self-kindness, and common humanity." Mindfulness is important so the meditator can notice her suffering in a balanced way, self-kindness involves "care and understanding" versus "harsh judgment or criticism" and common humanity allows the meditator to understand that "imperfections are part of being human and that flaws and inadequacies make one more (rather than less) connected to others." Body image concerns include body dissatisfaction, body shame and body surveillance. Body dissatisfaction happens when we evaluate ourselves in a negative light, body shame is when we judge ourselves as a person negatively because our body does not conform to society's standards and body surveillance is when we are endlessly concerned with how our bodies appear to others.

This study's authors brought up an important point - some women rely on body dissatisfaction as motivation to continue health and wellness practices like exercise and a healthy diet. Many participants could not find the time to add the meditation podcasts to their life and only completed the initial session in the laboratory.

Find the study here: http://self-compassion.org/wp-content/uploads/2017/01/Toole2016.pdf

Tripudio Dance Movement for Lipedema / Lipoedema

Tripudio Movement Exercise for Lipedema

by Kathleen Lisson, CLT

I first learned about Tripudio while researching exercise options for ladies with a lipedema / lipoedema diagnosis. The movement method is recommended in the article 'Accurate diagnosis and self-caresupport for women with lipoedema' by Williams and MacEwan in Practice Nursing 2016, Vol 27, No 7. The movements mobilize the joints and help move lymphatic fluid in the body.

The Tripudio website is here: http://www.tripudiomovement.co.uk/exercise.html

Watch Tripudio in action here:

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

Adipose Tissue Can Swim? (in fruit flies, at least) But What Does This Mean for Lipedema?

Adipose Tissue Can Swim? (in fruit flies, at least)

But What Does This Mean for Lipedema?

by Kathleen Lisson, CMT,CLT

It's been super interesting week researching my book on Lipedema.

I find that I am looking at studies early in the morning, like first thing in the morning. It's really interesting to find something on social media that one of the Lipedema facebook group ladies is talking about or something that I get in in my email that kind of piques my interest and then kind of be jumping down that rabbit hole reading a study.

I just recently read a study from the journal Developmental Cell and it came out in February 2018 and it's about the fact that adipose tissue doesn't just sit there. It actually has a lot of different jobs that it needs to do in the body to keep our body healthy.

And it's super fascinating because this study talked about the adipose tissue in the fruit fly. So it's definitely not replicated with humans yet.

We're not sure if this is also in humans, but it opens up the idea that adipose tissue is involved in the healing process and super interestingly, in fruit flies. Adipose tissue seems to be able to swim - to move from one area of the body to the other and that it also sets up shop around places that have inflammation in the body, and it has something to do with helping with healing.

I know I've already heard that it has roles in giving off hormones and possibly being loosely connected to the endocrine system. So this means it just gives that third dimension to studying adipose tissue.

I guess before I started on this journey of learning things about adipose tissue, I thought, which I think a lot of people do think, is that fat cells are how we store energy so we can use it later when we don't have food. I feel like that's what I learned in school and what I learned on the average website is fat cells are just a storage system and it really does much more, which makes me think, - if fat cells are doing more than that, maybe it can help scientists in the future unlock the reason why the adipose tissue lays down the way it does in Lipedema and why it's super resistant to diet and exercise.

In the old model we just think 'if we eat too much, our body makes it into fat and if we don't eat a lot, the body takes the fat and then burns it so that we can survive,' that kind of idea of having fat as just a storage space for energy, like where you buy the storage space for $100 a month and then that's where you put kind of your crap, your extra stuff and then you'll use it when you need it.

Fat is much more than just buying a storage space for $100 a month and shoving some extra energy in it in the form of adipose tissue.

So this is super exciting to me. t's just super fascinating to me how many uses that our fat cells have in our body and I believe if we respect it and if we learn about it, if we learn about the adipose tissue, it will share it secrets with us and then we can, hopefully in my lifetime, maybe beyond my lifetime, unlock that and say, you know what, if the fat cells are doing their job, they are doing a good job in protecting the body, but all we're seeing is that it's painful in Lipedema. The symptoms are painful in the adipose tissue disorder, lipedema.

Maybe we can figure out why it's having to react that way and help the body so the adipose tissue doesn't have to react that way. And if we solve that deep core problem and then the lipedema tissue won't have to be set up the way it is.

And then, the ladies who suffer from lipedema won't have to endure the painful side effects of having lipedema, that painful symptoms, the eventual limited mobility that happens to some people who have lipedema for a long period of time.

So that's my passion. That's what's in my mind this week. And I hope to continue studying this fascinating disease and give you more information in future installments. Thanks!

Fat Body Cells Are Motile and Actively Migrate to Wounds to Drive Repair and Prevent Infection find the study here: https://www.ncbi.nlm.nih.gov/pubmed/29486196

Self-Compassion Exercises for Living with Lipedema

Self-Compassion Activities for 

Living with Lipedema / Lipoedema

by Kathleen Lisson, CLT

As a meditation teacher, I know the importance of self-compassion in daily life. Living with judgement from society and self-judgement makes self-compassion and loving kindness even more important for ladies living with lipedema / lipoedema. Dr. Kristin Neff shares several self-compassion exercises on her website.

Visit the link here: http://self-compassion.org/category/exercises/

Watch Dr. Kristin Neff explain the Three Components of Self-Compassion in this video from the Greater Good Science Center:

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/