Big legs. Thick thighs. Wide calves. Cankles. Any one of these (and sometimes all of them) are signs of lipedema. I’m sorry to break it to you, but it’s better to know than wonder.
Most women with lipedema are smaller on the top half of their body than they are on the bottom half–but not always. Sometimes this is visibly extreme, sometimes it’s not. But even when weight is lost, the bottom half can still be disproportionately bigger.
It can affect the upper arms, and they can be bigger too with those batwings we’re often working on reducing.
And there may be some achiness in the legs and arms that cause us to run our fingers across the surfaces in an effort to soothe them. Though many times, as our hands glide across our legs, we’ll encounter nodules and irregularities that are just a little too intense to be dismissed as cellulite. These are all symptoms we tend to find in common with each other in lipedema.
And this is not your usual fat. Many of us are aware of our weird imperfections and try to be proactive and improve them. We diet (sometimes our WHOLE lives), exercise, and try to look remotely like the women we see in fitness magazines.
It’s possible to effect a better shape, but overall the appearance seems to be a little “off” compared to mainstream beauty standards. Legs will be not quite defined (sometimes especially the knees), and in some cases, appear like columns or tree trunks, and there might even be an ankle cuff where the fat literally cuffs at the ankles. This is lipedema.
“Do my legs look weird to you, Mom?” I asked that question more than once growing up. “No. Your legs are fine.” My mom would say. I suspect she was trying to make me feel better, but it actually made me feel even more introverted. It didn’t get any better when friends called me “Thunder Thighs”.
So, like most women with lipedema who don’t know they have it, I hid my legs from the world.
I might wear longer shorts, but you would never catch me in a swimsuit without a wrap or something to cover my thighs. Never. I skipped gym in middle school just because they required me to wear shorts. No way was I subjecting myself to that kind of ridicule. I’d rather fail 7th grade than be seen in shorts. What I wouldn’t have given to have just one other girl who looked like me. Though I now suspect that any girls that looked like me were hiding their legs too.
The first person to actually see my legs in all their dimply, mottled, ginormous glory was my husband when I was 18 years old. Fact.
Sometimes our legs feel heavier, and maybe a little achy. Or we’ll find that light pressure is uncomfortable–like a cat jumping up on your lap or a child or spouse resting his/her head on your thighs. Spontaneous bruising for no discernible reason is a complete possibility and maybe even a way of life.
And sometimes, our legs just hurt. Along with our arms and even our feet. At one point, before my surgeries, my pain level was a 6/7 out of 10 and it was systemically so bad that even laying down on my bed caused discomfort because of the pressure of the bed against my body.
What’s that bag of beans beneath your skin? Oh, that? Just my lipedema fat nodules being all fibrotic and nodually. Though sometimes, it feels more like rice in areas.
That brain fog? Also part of the package. Edema and water retention? Check check. Totally normal for lipedema.
Many women with lipedema are clinically obese–but not all. Maybe it’s from eating too much, but I can tell you from personal experience that it’s more often from eating the wrong foods.
Inflammation is a common reaction to processed foods, and even dairy for some. This can lead to more lipedema fat growth and weight gain. I’ve always startled people by how much I weigh in relation to my size. It’s because of all the fluid build-up stored in my fat, not just my fat.
But I WAS able to lose weight and even reached my ideal weight, but still, my arms and thighs were thick and funny nonetheless.
Fun Fact: Despite the fact that over 50% of women with Lipedema are labeled clinically obese, less than 2% have high blood pressure or diabetes.
Here’s the thing, Lipedema affects an estimated 11% of women. That’s a lot of women. But most people have never heard of it.
If you’ve read this far, and you’ve been thinking, “That’s me. Me. Me. Yep, that sounds like me…” Then, there are answers here. And hope.
So, what is Lipedema?
According to recent science and Dr. Karen Herbst, lipedema is a connective tissue disease, more specifically a loose connective tissue disease. Leaky vessels and triggered by inflammation, it creates increased fat storage in places like the hips, thighs, knees, calves, and ankles. It can also affect the upper arms. Lipedema means lipid (fat) and edema (fluid) literally fat that has fluid in it. That fat, when left untreated can become fibrotic nodules interfering with the lymphatic system and the many other complex systems within the body.
When I was diagnosed in 2013, there was so much less known than now.
The exact cause of lipedema is not known, BUT it’s often hereditary. In most of us, it is triggered by significant hormonal changes such as puberty, pregnancy, menopause, and sometimes in hormone treatments.
For me, it was puberty that brought it on. Then pregnancies and 4 kids later, and now perimenopause.
For many women, it’s puberty that they first notice that something is amiss. Though there have been women who were perfectly fine their whole life and then hit menopause and their body shifts from athletic and slim to big thighs and lipedema pain. So, it can vary from person to person.
My symptoms have always intensified during my period. It got so bad that I literally saw a doctor and said, “When I have my period, my thighs hurt. Almost like heavy cramping but different-especially my right outer thigh. And sometimes they feel hot inside.” He looked blankly at me, and said, “I have no idea what that could be.”
So, yeah. These are some of the symptoms that can affect us, but it can be different and less/more depending on the person and their stage of this condition.
We do know that if it’s left untreated with no regard for diet or exercise, that it can cause additional damage to the body cells and structure, and even secondary lymphedema.
Lymphedema is swelling in the arms and/or legs caused by damaged or missing lymph nodes resulting in an accumulation of lymph fluid and fluid imbalance. Normally, this can occur in patients after certain Cancer treatments or surgeries. However, lipedema fat and the connective tissue disorder can cause leakage and pressure that damage the fragile lymph glands resulting in lymphedema symptoms (swelling and fluid retention). When this occurs, it results in lipolymphedema.
With some conservative treatments including diet, the right kind of exercise, massage therapies, supplements, and some self-care methods, the progression can be managed and in some cases, even reversed.
I’ve created this website and blog to help you or your loved ones on this journey, and curated resources and information to help make this journey easier.
But mostly I wanted to let other women know that if they have these signs and symptoms, it is a thing! And they aren’t crazy or “just fat”. More importantly, they are not alone. There are thousands and thousands of us and we are constantly learning and discovering new things about lipedema.
Start with some of the links below and feel free to follow the links to other places. Bookmark and come back as much as you like, we’ll continue to share and post.
If you’re feeling saucy, you can subscribe to our newsletter. I only email once a week and it’s usually useful information. 🙂
Conservative Treatments for Lipedema
Lipedema Surgery Treatment Options