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Lighthouse Lymphedema Network

Shining Light On Lymphedema

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Lymphedema Network

Misdiagnosed as Obesity My Entire Life
By: Francine Schwartz Schuler

I have Francine1had a weight problem my entire life, starting as a baby my mother was told to only give me Skim Milk. As a toddler I had chunky legs and started to become knock-kneed. My mother had me on diets from Weight Watchers, Scarsdale, OA, Hypnosis, and others, where I would lose some weight but never from my legs, especially once I started menstruation. As a young adult I did the Medifast program and got down to 175 pounds, I was thinner on top and 2 sizes bigger on the bottom, even with going to the gym daily doing cardio and aqua aerobics. I had to stop because my liver enzymes elevated rapidly. I steadily regained weight though I was dieting and exercising.


In my 30’s I rose to my highest recorded weight of 425 before finally haviFrancine2ng WLS in 2016. I lost 120 pounds, then started gaining weight primarily in my hips, thighs, buttocks, and abdomen. I was also rapidly losing my mobility and was in intractable pain. I had been diagnosed with Sjogren’s Syndrome, which was causing my arthritis to advance, chronic fatigue, and an immense amount of pain. In 2018 I had trouble walking and doing other activities of daily living and was in pain constantly despite being treated by Pain Management. My Quality of Life was flying out the window. In 2019 I could hardly walk, needing a rollator walker, mart carts and wheelchairs, needing help bathing and toileting, and was hardly able to do any household chores. Little did I know I had started Perimenopause and my hip blew up on my right side, my calves and arms got bigger, my extremities were heavy, and I was in continuous pain and miserable.

 Francine spaI started searching the internet for my symptoms and came across images of legs that looked like mine! I immersed myself in learning about Lipedema and was grateful that one of the most experienced and renowned Lipedema surgeons, Dr. Marcia Byrd, was local to me. She started me on Complete Decongestive Therapy, including compression wrapping, Manual Lymphatic Drainage massage, supplements, and diet. I worked with a Certified Bariatric Nutrition Coach on a low carb balanced flood plan. I was able to lose more and currently weigh 195 pounds, though my pain levels and advancing of Sjogren’s arthritis are still extremely high and affect my Activities of Daily Living and quality of life. I follow my food plan, work with a psychotherapist, fitness trainer, nutritionist, support groups, wear compression faithfully, use pneumatic pumping at least 3 days a week and exercise in a swim spa on the other days. The worst part about this is the pain and dwindling quality of life. I am working hard and needed medical intervention and surgical intervention to change this trajectory.



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The Lighthouse Lymphedema Network is a 501 (C) (3) organization of individuals who are lymphedema patients, or who have an interest in lymphedema.

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