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What is Lipedema?

​​​​“Why can’t I lose weight?”“Why do I exercise and exercise, and I still can’t get my thighs to change?”, “Why is my upper body 3 sizes smaller than my lower body?”  These are questions I have asked myself since I was a teenager.  The frustration began as a child, and continued as I grew into my teenage years. With increased body image insecurities, I found myself dieting and exercising to try to get that body I had dreamed about.  Trying fad diets, counting calories, walking for hours and hours, running, aerobics, cross fit exercise, etc. I continued to be frustrated with limited change in my body.  I have been an Occupational Therapist for 18 years, and 16 years ago began my training as a lymphedema therapist.  It was during this training I found that, “It wasn’t my fault!”  I have lipedema.  Lipedema is a fat disorder that typically affects women, and is generally hereditary.      
 
Lipedema classic symptoms include:
1)  Increased symmetrical fatty tissue in the hips, thighs, medial knees, lower legs and ankles (bilaterally). It can affect the upper arms. Hands/feet are spared.
2)  Increased pain, tenderness to touch
3)  Bruises easily
4)  Swelling (edema) can occur in the limbs
5)  Decreased skin temperature in the limbs
6)  Diet and exercise have little effect
7)  Often occurs during puberty and pregnancy, and can increase with menopause 
8)  Hypermobile joints
9)  Fragile vascular membranes  
10) Psycho-social issues: depression
11) Low iron, vitamin D, and vitamin B 12
 
Lipedema stages
Stage 1: smooth skin; swelling increases during the day and resolves with rest/elevation
Stage 2: lipomas, eczema may be present, skin indentations
Stage 3: increased edema, increased thick tissue, increased fatty tissue overhanging in knees, ankles, and arms
Stage 4: consistent edema, lipo-lymphedema (develop lymphedema from decreased lymphatic flow through the adipose/fatty tissue) 
Treatment:

  • An anti-inflammatory diet may decrease inflammation and decrease edema. Decreasing sugar may also decrease accumulation of fat cells. Diet changes in the early stages may decrease the severity of lipedema.
  • Exercise: Yoga, Pilates, swimming, walking. Pilates and Core strengthening may increase stability in joints.
  • Complete Decongestive Therapy: Performed by a trained physical therapist, occupational therapist or massage therapist in manual lymphatic drainage, compression bandaging/garments, decongestive exercises, and skin care (for people who have swelling).  
  • Lymph-sparing water assisted liposuction is used in Europe, and is used in a few states in America. Need to have awareness that all surgeries come with a risk and need to consult an experienced physician.    
  • Compression garments: compression pantyhose, thigh high compression stockings with bike shorts, or capri-style compression garments with knee high stockings are recommended to decrease accumulation of edema.     

The cause of lipedema is currently unknown, but it is thought to be genetic, and hormones may play a role due to the fact that it affects mostly women.  The Mayo Clinic was the first to diagnose lipedema in the United States in the 1940’s, but few people or physicians are familiar with this disorder.  Some are just told to “lose weight”.  Gastric bypass or bariatric procedures may help some who are severely overweight, but they may find that their lower body changes little, and they may lose most of the weight in the trunk/torso.

For the past 16 years I have continued to wear compression pantyhose, and I have continued to exercise to keep weight down. But it wasn’t until recently that I have started changing my diet to an anti-inflammatory diet and doing CORE exercises, and have seen changes that I have been longing to see.  I still have “my thighs” but I have had a reduction in size and a change in fit of clothing.  For more information on lipedema please visit: www.fatdisorders.org

Tami Faris, OTR/L, CLT-LANA

 This blog is here for your help. It is the opinion of a Licensed Occupational Therapist. If you experience the symptoms addressed you should seek the help of a medical professional who can diagnose and develop a treatment plan that is individualized for you.  If you enjoyed this blog, check out our website at foundationalconcepts.net for more blog entries and to learn more about our specialty PT practice, Foundational Concepts.  Follow us on Twitter @SarahpelvicPT or @Jenn_pelvic_PT or @AmandaFisherPT and like us on Facebook/Foundational Concepts for updates.

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