Lipedema Warrior Here

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Battling Lipedema for most of my life.. I have my battle gear on trying to save myself.

There are over 17 million women in the US (over 360 million women globally) with undiagnosed Lipedema a progressive, painful adipose tissue debilitating disease. Lipedema DOES NOT RESPOND TO DIET AND EXERCISE, most doctors, nutritionists, trainers and insurance companies don’t even know what Lipedema is. There are no doctors on the east coast of the country who treat this disease. In Europe it is diagnosed at stage 1, here in the US women are just told to lose weight., then progressing to failing health and serious medical conditions.

At the age of 15 I lost 93lbs through clean nutrition and exercise. I stopped eating meat, processed foods, white sugar and flour. I was in the best shape of my life by the time I was 20. Then my undiagnosed disease continued to progress and I worked harder at fighting my body, each year more challenging. I tried hard to get my larger legs to match the rest of my toned body. Over 25 years later I was finally diagnosed at 46 years old, then stage 4. Had I been diagnosed in my 20’s when I went to doctor after doctor for help being told “you’re not trying hard enough” (meanwhile working out 2 hours a day 7 days a week) being told “calories in calories out” (meanwhile eating clean and healthy and not enough calories on some days), being told “you need to be honest with yourself” as if I was lying about how hard I was trying, and my all time favorite “keep your mouth shut” (by of course a male physician) as if I was again lying and really eating garbage like a pig and I did this to myself. I have had to defend myself to the doctors I went to for help, I was misdiagnosed as well.. Lipedema rapidly progresses during hormonal changes, puberty, childbirth, perimenopause, menopause and studies now show high levels of stress/cortisol levels may cause progression as well. There has been a genetic gene found recently. I share this all for you ladies, and some men out there.. if you are doing it all and have legs or arms that don’t match the rest of your shape you may have Lipedema. Please educate yourself on this disease. I’m back to tracking everything I eat, I am back with my gladiator gear on to continue the fight to save my own life and to share and help others who may need help with their battle.

kellysibley5262

Hello ! Stage 3 here and desperately trying to budge some weight. Calorie counting and low ish carb. Like you said everytime I lose weight it gets harder and harder. My legs are so heavy its hard to work. I need to do something!

Mocca1234

Thank you for your post. I’m stage 3 myself. I’ve been able to lose weight only by being in an extreme calorie deficit. The usual formulas never worked with my body. For example, my legs blew up at puberty, and the family doctor put me on a diet that caused me to gain weight. That began a difficult relationship with food and exercise that has lasted.
I was diagnosed three years ago and my struggles made sense. I’m here because I am determined to use every support possible to stay as mobile as possible in my “golden” years.
I use lymphatic pumps, do regular water exercise, and prioritize protein in my diet. I can lose weight, I just can’t measure the rate of loss against anyone who doesn’t have this disorder.

totameafox

I was born with a inherited genetic disorder. I was fortunate enough that my grandmother had already did the leg work to figure out what was wrong with her husband and her children. So while I understand struggle and tenacity. I cannot imagine not knowing about a condition for that many years. All of you are truly inspiring.