"Living in a Fat Suit" 23 Signs and Symptoms of Lipedema
If you're unclear whether or not you have Lipedema, here's a guideline for you.
Last year, I diagnosed myself with Lipedema. As a nurse, I’d never heard of this disease, and neither had any of my medical colleagues. It was only when I came across an article a woman wrote about her diagnosis that I started searching online to determine if my body issues matched that of Lipedema.
As I read and researched more, I felt sure this condition was what had been wrong with my body for a long time.
If you haven’t yet been formally diagnosed with Lipedema and wondering if you may also have this disease, there are several common signs you can look at, including your family, your personal history, and recognizing Lipedema indicators in yourself. Doing this self-assessment can take you one step closer to getting formally diagnosed and getting treatment.
My hope is this article will reach those who are still in the early stages of Lipedema. I want women to become aware of their disease before they reach Stages 3, 4, or even stage 2. All of this starts with looking at your body, gathering information, and pursuing medical treatment to help ease your pain and to better manage and care for your body.
The sooner you are diagnosed, the better you’ll be able to manage your Lipedema.
And Lipedema needs a lot of management!
Now before I get into this, I want to reemphasize that the information below is only for education and is not medical advice or treatment. Please read my medical disclaimer before you continue reading the article.
Here’s a scenario; let’s say you’re feeling off. Your throat hurts, it’s painful to swallow, and you feel a bit feverish. You do an internal checklist of your symptoms and then surmise you may have strep throat, a cold, or maybe the flu. You take this short list of your symptoms and see your doctor, giving her your list of symptoms. She will further examine you, do a more advanced exam, swab your throat, and send it to the lab, and with her information, will then give you a formal diagnosis. Then the most important part, she will treat your illness.
Lipedema also has common signs, symptoms, and indicators. You can use these commonalities to compare what you see and are experiencing in your body. Since many diseases can overlap in their symptoms,
This article will show you what Lipedema looks and feels like, so you can see if you have similarities. I want this article to give you more clarity about Lipedema and be validating for you.
As with any disease, not just one sign or symptom is enough to make a diagnosis. There are usually several factors that lead to a diagnosis. Physicians have the formal training to recognize those symptoms and identify the disease.
However, most docs don’t know about Lipedema, much less the capability to diagnose and treat this condition. Most physicians and other medical professionals will view Lipedema as morbid obesity from excessive calories. Most of the time, we’ll go for years aggressively seeking out a diagnosis for what’s happening to our bodies. That’s why I’m writing this for you. If one person sees themselves in this article and pursues getting treatment, it’s worth writing it.
I recommend tuning into your body. Give words to identify your signs and symptoms. For example, if you have pain, is it aching, sharp, burning, etc…is it constant or does it come and go? How intense is the feeling/pain? If you have fatigue, when do you experience it? Is there a time of day or after any particular activity that triggers your fatigue? In other words, give descriptions of your ailments.
Recognizing that there is something happening that is unusual or not '“normal” is the first step to getting diagnosed and treated.
Now here’s another problem; if you check your common symptoms with Dr. Google, Lipedema may likely not be a condition that pops up on your feed. For instance, if you search for “pain and fatigue in legs” it can show you articles about poor circulation or varicose veins. I’ve found that Googling symptoms don’t give you Lipedema as an option. I’ve had to reverse search Lipedema to find associated symptoms.
If you aren’t aware of Lipedema, and your PCP isn’t aware of Lipedema, it’s likely you won’t get treatment until it’s much more advanced.
With that being said, also know it’s difficult (but not impossible) to get a professional diagnosis for Lipedema. I wrote about this in one of my newsletters below:
I’ve heard from dozens of women how physicians will waive away a Lipedema diagnosis, saying they just need to diet and lose weight, or even saying it’s a made-up disease (which is a similar response back when women started experiencing fibromyalgia). The best way to get a Lipedema diagnosis is to arm yourself with facts and unwaveringly advocate for yourself.
Lipedema has some universal signs, symptoms, and indicators.
Lipedema has a similar pattern of characteristics that show in all of us. That means our bodies have a similar look. Depending on which Lipedema stage you’re in, you should see a similar pattern of signs and symptoms if you have Lipedema. You will recognize your body in the photos below, showing what others look like with this disease.
23 Signs and Symptoms of Lipedema
1. The main symptom is an accumulation of fat in the lower body:
Lipedema accumulates fat in the butt, hips, thighs, calves, and even arms and spares the hands and feet. This larger lower half is disproportionate to a smaller or normal-sized upper body. We have what is called a pear-shaped body. It is common to wear a much larger size in your lower body than in your upper body.
2. Lipedema is a woman’s disease. It rarely affects men:
Lipedema seems to be connected to the hormone estrogen, and unless a man has high estrogen levels, he will likely not have Lipedema. If you’re a woman, you have an 11% chance of having Lipedema.
3. Women in your family have a similar shape:
Lipedema is thought to be an inherited condition. Your mom, grandma, aunts, female cousins, and even daughters have the classic look of Lipedema: larger lower body with swollen, dimpled, bumpy hips, thighs, and legs, and a disproportionally smaller upper body.
4. Symmetrical presentation involving both legs:
In Lipedema, your legs will be equally affected. There might be a very slight difference in size (for example, my right leg is only slightly larger than my left leg). However, If one leg is much bigger than the other leg, you may instead have lymphedema, which is caused by other medical reasons than the diseased adipose tissue and has different treatments.
Lymphedema is much different than Lipedema. Here is an example below; the picture on the left is lymphedema. On the right, Lipedema.
5. Lipedema is NOT lymphedema:
Lipedema is frequently confused with Lymphedema. However, Lipedema can progress to secondary lymphedema, called Lipolymphedema. It’s important to know the difference because these two lymphatic conditions have different treatments.
6. Tree trunk legs:
Lipedema will grow abnormal amounts of fat build-up, mostly around the hips, buttocks, legs, and around the knees. In the above photo, the Lipedema model’s kneecaps have disappeared. Lipedema fat is bulky and bumpy, taking over to the point where there is no body definition.
7. Hands and feet are not affected by Lipedema:
Notice in the photo above on the left, the lymphedema foot is swollen. In the photo on the right, the Lipedema legs are swollen only to the ankle, and the feet are unaffected. The cuffs at the ankles with an absence of swelling in the feet is a classic sign of Lipedema.
8. Pain:
Lipedema is known as painful fat syndrome. The pain can be a subtle discomfort and tenderness, to outright severe pain, and everything in-between. Pain varies depending on staging, whether or not you have Lipolymphedema, and/or a variety of other factors (such as varicose veins, diabetes, arthritis, or other conditions).
Lipedema pain is typically described as aching, tender, itchy, full, numb, trickling, burning, cramping, and neuropathy (nerve pain). Leg pain increases when walking. You can have restless legs (an irresistible urge to move with twitching) at rest.
Hypersensitivity to touch and pressure-induced pain is common; Pressing on the skin, even with a light touch can be painful; Having a pet walking across your lap or from your clothes resting on your skin can be painful.
9. Hypermobility:
Can your thumb touch your forearm? Can you bend over and place your palms flat on the floor without bending your legs, like in the picture below? This is hypermobility and called Hypermobile Ehlers-Danlos Syndrome, hEDS, a common indicator of Lipedema. Both of these conditions are connective tissue disorders and go hand-in-hand with around 60% of women who have Lipedema.
10. Joint pain and problems
Fat lobes and pads in the lower body put stress on joints, causing abnormal gait and/or increased joint pain. The weight load stresses weight-bearing joints (hips, knees, ankles) which also causes pain, decreased mobility, and fatigue.
11. Knocked knees
In later Lipedema stages, the increased weight can cause the knees to collapse on each other, as shown below, especially in the photo on the left.
12. Your upper arms are much larger than you lower arms:
As you can see in the photo below, the upper arm skin is bulging over the elbow and is much larger than the lower arm. The skin fold over the elbow is a common indicator. At least 30% of women with lipedema have their arms affected. Sometimes it’s difficult to tell, but if you squeeze the skin in your upper arm, Lipedema fat will look like small pebbles under the skin.
13. Caloric restrictive diets and/or excessive exercise doesn’t work for you:
Diets have little to no effect on reducing lipedemic fat. No matter what you do or how much you exercise and diet, you don’t lose weight. If you’ve tried every diet possible to the point of starving yourself and find your body grows instead of shrinks, you may want to consider exploring other reasons for this.
Lipedema tissue is diseased fibrotic tissue—firm nodules like marbles or rocks. They are diseased and fibrotic, holding in fluid and causing inflammation.
All that fad dieting does is compromise your gut health and creates eating disorders.
14. Easy bruising:
Do you get bruises on your legs and have no idea how you got them? Does it seem like a soft knock on your skin gives you a dramatic bruise? If you check your body right now, can find a bruise? (I have two right now on my legs).
Women with Lipedema tend to bruise easily in their affected areas. There are scientific hypotheses about why this happens. If you’re interested, you can read about it here.
16. Decreased skin temperature in the limbs:
The skin over Lipedema fat feels cool to the touch. Even when I feel hot and sweaty, the skin on my hips, legs, and buttocks still feels cold most of the time.
17. Visible veins in the legs:
It is common for women with Lipedema to have some venous disease. This can include “spider veins”, varicose veins, heaviness or fatigue in the legs, leg swelling and discoloration, and itching or restless legs. Many signs and symptoms of vein problems overlap with Lipedemas symptoms. During my quest for treatment, I had these same symptoms and saw a vascular surgeon. He diagnosed me with varicose veins. I had vein stripping, hoping this would relieve my pain and heaviness. It did not.
18. Sleep disorders:
Women with Lipedema commonly have chronic sleep disturbances including insomnia or awakening in the morning feeling sluggish and less than refreshed. Snoring and sleep apnea increase with increased weight. Midriff fat can indirectly compress the lungs, ribcage, and airway, decreasing airflow.
A sluggish lymphatic system may also cause snoring or sleep apnea because of extra fluid pooled in the body as the inflammation decreases during the night.
Chronic pain can also cause sleep disorders. Studies have shown that 55.4% of patients who experience sleep apnea have chronic widespread pain. Women who have chronic pain and sleep apnea have higher pain and lower quality of life.
19. Digestive issues:
Our gut health has a significant impact on our Lipedema. Consuming foods that cause inflammation, such as high carb and high sugar, tend to worsen Lipedema symptoms, especially swelling. Ehlers-Danos Syndrome—the hypermobile description in #9—can also impede gut motility, causing constipation, abdominal pain, and bloating, among other issues.
20. Weight gain during life’s hormonal fluctuations:
Did you start having uncontrollable weight gain as a teenager? Or maybe it was after you had a baby? Or did the weight gain start during menopause (like mine)? Hormonal changes seem to exacerbate and/or progress during puberty, pregnancy, or menopause. There are several readings that indicate estrogen plays a role in triggering Lipedema. Onset or exacerbation can also present after surgery with general anesthesia.
21. The medical industry can’t figure out what is wrong:
You’ve had extensive labwork, imaging, and consults with a variety of specialists, but they’ve failed to find a solid diagnosis. They may rule out some diseases such as diabetes, thyroid disorder, or rheumatoid arthritis. Or you may be misdiagnosed with another condition like venous insufficiency, fibromyalgia, primary lymphedema, or written off as “baby fat” post-pregnancy or normal menopause.
Lipedema does not have a specific biomarker in the blood (yet) that can be measured through bloodwork/lab work.
Lipedema is only diagnosed through a clinical examination by a skilled practitioner experienced in Lipedema, including patient history and an extensive physical exam. Most primary care providers (PCP) and general practitioners (GP) do not have the training to recognize Lipedema unless they’ve had some personal or professional exposure to this disease.
For the untrained clinician, they may only see you as a morbidly obese person who needs to lose weight. They haven’t learned about Lipedema; and since they aren’t familiar with this type of disease, they won’t recognize the clinical signs you present to them.
22. Mental health issues:
Women with Lipedema are discriminated against, being seen by society as fat, lazy, undisciplined, and ugly. Although Lipedema affects 11% of women—that’s over 16 million women in the U.S.—it’s still not globally recognized as a serious, progressive disease. We will spend a fortune trying to find out why we’re fat, tired, and in pain and will be failed and discriminated against over and over again by the medical community. We will go for years trying to feel better, with failure after failure.
Our exposure to a critical and abusive society leads to a negative self-image, embarrassment, shame, isolation, decreased socialization, complex family dynamics, missed work and career problems, decreased quality of life, anxiety, depression, and even suicidal ideation.
23. Your body physically keeps you from being active.
In stages 1, or even 2, you may not have any serious complaints of pain, fatigue, or swelling. But, Lipedema is a progressive disease. Lipedema will progress by growing more lipedema fat, which increases body mass, leading to increased pain and fatigue, less ability to move your body, and overloading the lymphatic system, progressing to Lipolymphedema. This additional fluid will cause excess weight and taxes our bodies even more.
Many of us struggle with chronic pain and fatigue, and decreased mobility from this growing fat. People may believe we get “fatter” because we become less active, when it’s the exact opposite.
As our Lipedema progresses, we slowly do less and less. Our body only has so much energy for the day, and then it shuts down. We find we must measure out our activity. We become less active, and because of this, we have a decreased quality of life.
It’s like living in a fat suit that you can’t take off. Only when we learn the tools to manage our Lipedema can we get some relief.
Do you recognize yourself in most of these signs and symptoms?
This list is only a small part of what specialists use to determine if someone may have Lipedema. If you’ve gotten this far in this lengthy article, Yay!! Thank you for reading this far. If you seem to fit into many of these points, I encourage you to keep exploring and educating yourself about Lipedema.
For many of us who’ve finally been diagnosed, after years of searching, it’s a relief to put a name to what’s happening to our bodies. When I was diagnosed, I felt validated, knowing my weight gain, pain, swelling, and fatigue weren’t my fault. I was finally on the right path to finding the proper treatment for myself, instead of dieting, exercising, and feeling guilty because I never succeeded (FYI dieting and exercise are still important, but there’s a different approach for Lipedema, which I’ll write about another time).
If you’re unsure you have Lipedema, it’s important to find out as much as you can about this disease, take the knowledge you’ve gathered, and bravely seek treatment. Be an advocate for yourself.
Thank you for taking the time to read this article. It was a doozy! I’ve extensively read and gathered information about signs and symptoms of Lipedema, and spent weeks writing this post. I hope it is of benefit for you. However, this is a static article. As new research gives further explanations for Lipedema, some points about Lipedema may change. If you see anything in this article or have questions, please reach out to me in the comment section below.
My references for this article if you want to read further:
https://journals.sagepub.com/doi/full/10.1177/02683555211015887
https://www.lipedema.org/diagnosing-lipedema
https://static1.squarespace.com/static/5775899ac534a5e813c050db/t/62ab510148da7356b73336b5/1655394562227/Lipedema+Dx+Comparison+Chart+v1.1_External+%281%29.pdf
https://torontophysiotherapy.ca/patient-guide-to-self-diagnosing-lipedema-and-lipo-lymphedema/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6790573/
https://www.nhs.uk/conditions/lipoedema/
https://simplyhealth.io/14-frequent-signs-of-lipedema/9/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6002318/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465366/
https://my.clevelandclinic.org/health/diseases/17175-lipedema
https://www.cvmus.com/blog/4-things-you-must-know-accepting-lipedema-treatment
https://www.marieclaire.com/health-fitness/a15819/lipedema-reason-cant-lose-weight/
https://www.obesityaction.org/resources/lipedema-and-obesity/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465366/#:~:text=The%20pathophysiology%20of%20lipedema%20remains,made%20on%20clinical%20grounds%20alone.
https://static1.squarespace.com/static/5ed7ee9ea8cb9f38c49ca762/t/5eeaa64311cbcf5d7d772f56/1592436292857/slp191017+sleep+nutrition+LE+lipe+Ehrlich.pdf
https://www.jillcarnahan.com/2021/02/25/what-you-need-to-know-about-ehlers-danlos/
https://www.wellnessresources.com/news/a-sluggish-lymph-system-causes-snoring-sleep-apnea
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616133/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8583809/
You're amazing for creating this space for women. Xoxo- Lymph Love Club