The story is almost always the same, and we hear it all the time; women are living in pain for the majority of their lives, begging for medical explanations and solutions, and are coming up empty. These women spend years – sometimes decades – struggling with uncontrollable and disproportional weight, deep bruising and tender skin from the lightest of touches, and have constant swelling. Their weight gain is typically in their limbs or “trunk” and widely does not affect their feet, hands, or upper body from the waist up. These symptoms progress, cause more pain, and often get to the point that women are unable to walk upstairs, take a brisk walk, or even sit for long periods of time without feeling intense pain and discomfort. 

The consistent diagnosis from their primary care doctors centers around their weight, and are diagnosed for general obesity, and prescribed treatments that range from diet and exercise to more extreme surgeries to curb appetites and encourage weight loss. Unfortunately, for those who have Lipedema, these treatments will turn up useless and ineffective, yet their doctors assume the issue is from the patient’s lack of dedication to the prescribed program, rather than the misdiagnosis of the disease known as Lipedema. 

4 Steps to a Lipedema Diagnosis

What is Lipedema?

Despite affecting an estimated 11% of women around the world, Lipedema is not yet widely known. Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, but sometimes spreading occurs in the torso, and in many cases, excessive clustering of fat cells is noticed in the arms as well. Regardless of the affected area, the symptoms are equally debilitating, and unfortunately, these fat cells are equally resistant to both diet and exercise programs. 

Unlike Lymphedema or general obesity,  Lipedema has a tendency to affect both limbs equally and generally becomes more apparent over the course of time. Lipedema’s progressive nature makes getting a proper diagnosis and treatment imperative and extremely time-sensitive – as the disorder progresses so does the pain, immobility, and discomfort.

Getting a Lipedema Diagnosis Step 1: Symptoms Checklist

In addition to the characteristic disproportionate fat accumulation, there are specific physical signs and symptoms of Lipedema. Do any of the following Lipedema symptoms sound like something you regularly experience?

Lipedema Symptoms Checklist:

☑Tender skin that is sensitive to the touch, feels pressure when walking or climbing stairs, crossing your legs, or sitting for long periods of time.

☑Skin’s surface feels nodular and firm, like beans in a bean bag or rubber balls. 

☑Skin’s surface is uneven, with large bulges and valleys up and down. Areas that were traditionally thought of as cellulite are much more dramatic and bulging. 

☑Skin’s temperature is relatively cool.

☑Legs feel heavy and tired.

☑Swelling in the affected area (legs, arms), worsening during the day, and better at night after you’re able to elevate your limbs (such as laying in bed). 

☑Easy bruising.

☑Visible veins.

☑Disproportionate fat accumulation, not affected by calorie restriction. Think extreme “pear-shaped” body. 

☑Feet and hands are unaffected by weight gain or swelling. As a result, there’s often a “cuff” at the ankles or wrists. 

Overall, Lipedema appears in a series of three stages. Do any of these sounds like you?

3 Stages of Lipedema:

3 Stages of Lipedema Infographic

If one of these stages sounds like you, and you checked off multiple items on the list above, you may have Lipedema, but it’s impossible to say for sure. The only way to know for sure is to get a proper Lipedema diagnosis, which in itself is an important process. 

Getting a Lipedema Diagnosis Step 2: Recognize Related Conditions

The diagnosis of Lipedema is made based on a clinical evaluation from a physician with specific knowledge and experience of the disease in combination with supporting tests that rule out other diagnoses. For this reason, it’s no surprise that Lipedema is a poorly recognized and under-appreciated disease in the United States – it takes an expert to recognize it, and finding an expert is tough if you’ve just learned about it yourself! The recognition of characteristic features of Lipedema and the elimination of other conditions that can be confused with Lipedema is the key to the proper diagnosis. We know it can be overwhelming, but knowing as much as possible before speaking with your doctor or seeking out an expert is another tool in your pocket to ensure you receive the care you need. You can read more about related conditions here, but it’s important to know the main points to advocate for yourself.

Below are conditions that can be confused with and can affect people with Lipedema. Because there can be so much overlap in appearance and symptoms, only clinicians with the training and experience to diagnose and treat these conditions can differentiate them. If you’re diagnosed with one of these conditions but you feel strongly that the diagnosis is incorrect, these summaries can help highlight why. 

While Lipedema typically does not have to swell in the patient’s feet and hands, Lymphedema will always have swelling in these areas. Lipedema symmetrically affects both legs equally, but Lymphedema usually affects one leg or arm and leaves the other leg or arm unaffected. There may be overlap in these two diseases and treatments can be similar, but some patients only experience Lymphedema after their Lipedema progresses into later stages. 

Obesity is much more common than Lipedema, and the most common misdiagnosis for it. While obesity is the accumulation of excess fat, stored centrally inside the abdomen or belly, Lipedema is the excess accumulation of fat out of proportion on the extremities, and typically not in the abdomen or belly. There may be overlap in these two conditions, too. In fact, sometimes obesity develops as a secondary condition due to the mobility problems caused by the Lipedema. So, not only is lipedema often misidentified as just obesity, but obesity can also complicate Lipedema, and be a symptom of it. 

The symptoms of Lipedema and venous insufficiency are similar. They both cause heaviness, tenderness, fatigue, and swelling. They often both have discoloration in the shins, easy bruising, and prominent veins. In more advanced cases of venous insufficiency, not only does venous lymphedema develop, but a secondary Veno- Lipo- Lymphedema develops. With the overwhelmed lymph circulation, the ability to clear fatty acids from the affected tissue is compromised and a secondary fat accumulation occurs. In many cases, the best way to differentiate between lipedema and venous insufficiency and veno- lipo-lymphedema is to have a specialized standing venous Doppler ultrasound to check for venous reflux.

Conditions Like Lipedema

Getting a Lipedema Diagnosis Step 3: Find a Lipedema Expert 

Now that you’ve reviewed the signs and symptoms of Lipedema, determined that you identify with at least some of them, and you’ve familiarized yourself with other commonly related diagnoses, it’s time for the final step – finding a Lipedema specialist and getting tested! Each Lipedema doctor will have their own preferred method of diagnosing their patients and typically will include a physical exam, patient questionnaires, and then additional testing and ultrasounds to further support the physical exam. 

Getting a Lipedema Diagnosis Step 4: Diagnostic Testing 

Below are the different tests you may experience during this time, and it’s important to keep them in mind as you select your doctor. Moving forward, thoroughness will be your best friend; we highly recommend “interviewing” different Lipedema experts to find someone you trust, someone who can provide at least some of these diagnostic tests, and someone who is well versed in treatment options.

Note: There is no single test to diagnose Lipedema. Tests, however, are important to rule out a related disorder.

Stemmer’s Sign Test:

The Stemmer’s Sign is the inability to pinch the skin between the toes or fingers. As mentioned in our last section, Lipedema in advanced stages can be complicated by secondary Lymphedema and may have a stemmer’s sign. This test can help Lipedema experts determine if this is the case for you. 

Venous Doppler Ultrasound:

A Venous Doppler Ultrasound is a very useful test for the diagnosis of Lipedema. Lipedema has many similarities to venous insufficiency (as explained above), so this can help rule out or confirm venous insufficiency.  The Venous Doppler Ultrasound can readily detect venous insufficiency if done properly and by having the patient stand while completing it. Unfortunately, most hospital vascular labs complete Venous Doppler Ultrasounds with the patient lying down, While this is the typical way to find Deep Vein Thrombosis (DVT), it is definitely not a successful method to detect venous insufficiency. A standing venous Doppler ultrasound is a painless, non-invasive, and inexpensive test that provides a lot of useful information about venous circulation. The Doppler ultrasound not only helps determine the presence of underlying venous problems, but it also gives critical information for managing Lipedema. If venous insufficiency is present, it is important that treatment is given as the resulting increased venous pressures can greatly aggravate Lipedema.

Lymphoscintigraphy:

This is generally only used in complicated cases, where clinical diagnosis is not clear. This is a nuclear scan that assesses the lymph system. It may come back as normal in patients with Lipedema and may show the characteristic “corkscrew” changes with Lymphedema. In most cases of Lymphedema, lymphoscintigraphy shows delayed uptake. So lymphoscintigraphy can be very helpful to determine if and how significant a role lymphedema is playing in an individual’s symptoms, especially when there are widespread issues of swelling in the body. 

Life After Diagnosis

First – congratulations! We know the road to diagnosis is emotionally draining, physically painful, and it can feel lonely and discouraging. The time and research it takes to make it to this point are huge, and you should be proud of yourself and the courage it takes to be your own advocate. Our hope for all women with Lipedema, whether they are our patients or not, is that we can provide valuable tools and knowledge so that more women can make it to this point and take the next step in living a more mobile, healthy, and enjoyable life. 

After going through the diagnosis process and receiving a positive Lipedema diagnosis, most patients are relieved, overjoyed, and validated by their endless search. After years of living with the private struggle and knowledge that “something just isn’t right” in their body, putting a name to the issues is a huge win. And after an official diagnosis, there are many different treatment paths available to you! A treatment plan should be discussed and developed between you and your Lipedema doctor, but you can read more about non-surgical and surgical options that we recommend to our patients. While these will always depend on specific cases and patient needs, it can give you an idea of what options may be available to you. Good luck! 

Lipedema continues to be a poorly identified condition where diagnoses are often avoided by US physicians. Identifying lipedema involves a clinical evaluation from a medical physician with expert knowledge regarding this condition. Two factors that are critical in finding a proper lipedema diagnosis include identifying an abnormal fat deposition in impacted areas and identifying symptoms of lipedema.

Obesity vs Abnormal Fat Accumulation

Far too often Lipedema is misdiagnosed as obesity. The abnormal fat deposition of lipedema is very different from obesity. Individuals with lipedema typically accumulate disproportionate fat in soft tissue just below the skin on the arm and legs. Individuals with obesity typically see a proportional increase of fat issue around the body but it is more concentrated inside the abdomen, called visceral fat. Individuals with lipedema will instead see a much greater fat accumulation be around extremities and not the abdomen which is described as disproportionate when compared to the rest of the body.

Lipedema can be identified with five different types of the condition depending on where the fat tissue is found predominantly. Type I identifies lipedema with fat pockets around the buttocks. Type II identifies lipedema with fat around the hips and thighs in addition to the buttocks. Type III identifies fat tissue around the calves, ankles, and thighs. Type IV identifies lipedema with pockets of fat tissue on the arms while Type V is lipedema with fat tissue found exclusively on the calves and ankles.

Symptoms of Lipedema

It helps to properly identify lipedema by recognizing many of its common symptoms. Individuals who have been properly diagnoses often have tender skin that is sensitive to walking and pressure. Limbs affected by lipedema appear to be “fluffy” and have a rubbery feel to them. The skin tissue will eventually harden and feel like beans in a bag. Skin tissue will also lose elasticity and become uneven. The overall temperature of the skin will cool. Your legs will begin to feel heavy and lead to overall fatigue. Individuals with a newer development of lipedema will see that swelling will be frequent during the day and subside at night. Individuals who have been dealing with lipedema for years will notice that the swelling will progress at later stages. Finally, individuals with lipedema will also notice visible veins under the skin on impacted limbs and will bruise easily.

Seek Your Proper Treatment

Properly identifying symptoms of lipedema and observing abnormal fat distribution will help with diagnosing this condition. Physicians now use tests to help with their diagnoses such as venous Doppler ultrasound and lymphoscintigraphy. Additional research will help with properly identifying lipedema from obesity and other fat-related conditions. Contact us for your proper lipedema diagnosis.

When most think of lipedema, they think of the changes in size the body will go through as the disproportionate fat tissue accumulates. This fat tissue is disproportionate, as it typically builds up most around the lower extremities such as the hips and thighs. This change can hurt the way you think you look and harm your social relationships. However, lipedema can do much more than just harm your self-confidence. Lipedema causes arthritic symptoms similar to that of degenerative joint disease. This condition disables most individuals, causing them mobility issues.

Increased Pressure on the Knee

Mobility causes stem from the fat tissue on the inner thigh puts pressure around the medial knee compartment. This increase of pressure will lead to acceleration knee joint degeneration that could require an eventual knee replacement. However, the buildup of pressure also applies further down the leg as well increased pressure on inner half of the leg lead to flattening of the plantar, foot, arch. The distal back of thigh and the back calf can also interfere with mobility even further by restricting the flexion (bending) of the knee.

Restricted Range of Motion

One way that degenerative joint disease can impact your mobility is through causing a restricted range of motion. The range of motion in one’s legs is identified through a term called flexion, which is measured in degrees. An individual without lipedema typically has a full range of motion of up to 140 degrees. Individuals with lipedema can have a flexion reduced to only 90 degrees, considerably less than those without lipedema. The fat tissue around the knees can make full motion virtually impossible. This mobility issues from lipedema will persist even when a knee replacement is done, and you will not find much success without first dealing with the fat tissue.

Reducing the Fat Tissue with Liposuction

Before a knee replacement can be completed, it is recommended that the fat tissue in and around the knee be removed with liposuction. Current procedures are now minimally invasive to ensure success and comfort of the patient. Once the fat tissue has been removed, the success of a knee replacement is exponentially increased. Reducing this fat tissue will also reduce the pressure on your knee and surrounding leg, leading to greater activities of daily living.

Seek Your Treatment Today

As you can see, lipedema impacts more just self-image; it can do irreparable damage to your knees and surrounding leg tissue. Seek out the treatment you need with lipedema specialists such as Dr. Wright. Your lipedema treatment plan can help you achieve greater mobility and reduce the impact lipedema has on your daily life. Contact us today!

Lipedema and Lymphedema Webinar: Mythbusting and Case Controversies
 
Join this lively and interactive discussion with Dr. Wright and other experts!
 
Jun 11, 2020 08:00 PM
 

As you may have noticed, the healthcare industry has been turned upside down by the sudden onset of COVID-19. Several businesses that are deemed non-essential have temporarily closed their doors until further notice, while others are available only for emergency or essential procedures. This can include many places where you can seek relief for your lipedema symptoms. Fortunately, there a few at-home exercises and measures you can take to manage your symptoms of lipedema.

Lipedema Exercises

There a several different low impact exercises you can try at home to manage your lipedema symptoms. These exercises include shoulder shrugs, neck rotations, hip abductions, ankle pumps, and bent knee fall outs. The exercises are designed to help stretch out your lymphatic system allowing lymph fluid to flow easier.

At-Home Workouts to Fight Off Lipedema Symptoms

General workouts designed to fight off lipedema symptoms are different than the exercises described above. One of the best yet hardest ways to fight off lipedema symptoms is to follow a workout regimen at home. Healthy exercise helps us develop muscle tissue and promote lymphatic circulation. Most of these workouts are low impact and will not be stressful on your joints. These workouts include swimming and water exercises, walking with supportive footwear, elliptical machines and stationary bike rides. Ellipticals and stationary bikes even allow you to change the resistance so you can find the perfect balance of cardio and strength building.

Wear Compression Garments

One of the most common lipedema symptoms patients will experience is swelling. Not only does swelling look unattractive but it can also be painful. One conservative treatment option you can do from home is wearing compression sleeves or garments. They can reduce your swelling and help the flow of lymphatic fluids in your affected limbs. These garments are recommended to be worn all day, so it is important to find your correct size.

Maintain Healthy Nutrition

By maintaining a nutritious diet, you can help reduce inflammation, another common symptom of lipedema. Your diet should include plenty of fatty acids that can help reduce your inflammation and overall swelling. Foods you will want to stay away from include processed packaged foods, wheat and gluten products, refined carbohydrates, dairy products, and food that is high in trans-fat.

Stay in Touch with Your Physician

While some healthcare offices may be closed, several physicians, including our own Dr. Wright, are introducing video consultation to better support their clients. Make sure to stay in contact with your physician and seek out their advice during this time!

In this blog, a woman shares her very real experience finding out she has lipedema.

 

Lipedema Ruined and Saved This Fat Girl’s Life

In my 30 years of life, or at least over the last ten years, my weight and chronic pain has left me at a loss. I’ve tried every crash diet that exists — Keto, HCG, Phentermine, low-fat & high-protein, intermittent fasting, and the Beyoncé detox of spicy lemon water. I’ve trained and ran half marathons, hired personal trainers, seen a nutritionist, and eventually, when my anxiety and depression took over, started therapy. I’ve really tried not to be fat, but here I am.

My ego would like me to point out that I’m not an obese person, although my doctor would disagree. I was never an overweight kid and remained active into adulthood. I played basketball, ran track, and practiced a balanced diet. When I felt pain, I contributed it to my weight. When the pain turned debilitating after starting birth control at 19 and my weight shot up, my doctor told me to “lay off the cake.” Had he spent more than ten minutes with me, I could’ve explained that I’m not a fan of cake, and he was a dick. 

Eleven years later, as I ring in my 30th birthday, I wish I could say I’ve learned to love my body and embraced the “Every Body is Beautiful” campaign. But I’ve been worn down, embarrassed, and depressed. In the two minutes between a shower and getting dressed that I avoid eye contact with myself, I evaluate the painful bruising all over my legs. I take in all my weird, bulky cellulite that, for some reason, always appears extra-fatty while also extremely firm. I avoid physical touch because even a gentle tap is painful. I teeter between sadness, helplessness, and anger.

Why do I wear a small t-shirt and an XL pant? If I lose weight, why is it always in my upper body, and I remain a size 16 jeans at any weight? My god, I cannot afford to lose another cup size. I start to furiously ask Google all of these questions. I ask her why my knees have so much fat around them, why I bruise so easily, and why I can’t run anymore without incredible pain. As I start to go down the 2 AM rabbit hole, I come across a medical journal in Germany about fat disorders and start reading about something called Lipedema. From here, my journey to healing (but also a lot more pain and anger) begins.

Lipedema is a subcutaneous adipose tissue disorder, in which the blood vessels and lymphatic system do not properly move toxins out of the body through the lymph nodes. This causes easy bruising, swelling, bulky legs (and sometimes arms), chunky looking cellulite that are actually lumpy cyst-like bulges, and cuffs around the wrists and ankles. Essentially, the body doesn’t drain liquid, and the “clogging” causes fatty masses all over the body. Specialists estimate this affects approximately 10% of women across the world, yet it goes widely undiagnosed. Or, more commonly, misdiagnosed as obesity.

After reading as much as I could about lipedema and the handful of doctors who study it in the US, I brought this information to my doctor. He scoffed at me, requested I stop self-diagnosing, and suggested I get lap band surgery. He would prefer I get a serious surgery to remove part of my stomach, despite all my labs coming back athlete-level healthy. Upon a second request for a referral, he suggested I increase my anti-depressant dosage, and again, stop reading fake medical journals. I left in tears, half out of anger and half out of embarrassment.

After a few days of additional research, I started making calls. I found the best doctor specializing in subcutaneous adipose tissue (SATs) disorders, flew to Arizona from Texas, and was immediately diagnosed. I was put on a strict diet, prescribed a compression machine and compression garments, and am scheduled to get out-patient surgery to drain my excess fluid by the end of the year. It is generally an inconvenience, but I’m psyched for what comes next.

I’ve just completed a DNA test for a research study related to these disorders and will participate to evaluate the affect this surgery has on the disease. While I plan to journal my own experience through the process, I’m particularly interested in spreading the word about Lipedema, given my experience with gas lighting from my many male doctors. While in AZ, each team member had story after story about women being told they were crazy, that they were lying about their diets, exaggerating their pain, and simply not working hard enough.

The thought of one person going through a serious surgery like the lap band procedure recommended to me — when it won’t actually help — terrifies me. Stay tuned for my many updates, but in the meantime, feel free to reach out to me if you think any of the following apply to you:

I’m happy to direct to you those who have helped me. Stand up for yourselves, girlies. Be your own advocates, and down with the patriarchy.

We are very grateful to Ms. Karwick to allowing us to share her experience.

About the Author

Cat Karwick

Follow

Content Creative. Women’s Health Advocate. Experience calling out mansplainers and finding carb substitutes.

Cat Karwick

Following

Sep 23, 2019 · 4 min read

 

This article is from Medium.com and was posted on Sept 2019.   https://medium.com/@karwickca/lipedema-ruined-and-saved-this-fat-girls-life-26ce65ec9185

Understanding the severity of lipedema starts by identify and understanding the symptoms of this lifelong condition. Many individuals without lipedema do not understand that the symptoms can greatly impact your day-to-day lifestyle. Here are the lipedema symptoms and how they can impact your way of life:

Lipedema Symptoms – Larger Lower Legs

One of the most prominent symptoms of lipedema is the disproportionate accumulation of fat, often in the legs, resulting in a column-like appearance. Unlike regular fat buildup that may be greater in certain parts of the leg, lipedema fat tends to build up all over the leg. This will cause your legs to have a trunk-like appearance. Individuals with lipedema can have a circumference that is much larger on their lower half of the body than on the upper half. Unfortunately, this fat buildup causes the skin to become more tender and bruise much easier. The appearance of more bruises can become very noticeable and impact your self-confidence. Finally, you may not be able to move your legs as easily as before, causing mobility issues.

Larger Arms

While lipedema fat buildup occurs more often in the legs, it can also impact your arms. Individuals with lipedema can develop a fat buildup in the arms making them feel heavier. This buildup will reduce your arm’s mobility, making it harder to move.

Lymphatic System Blockage

Lipedema not only impacts our outward appearance, but also the internal functions of our body. Lipidemic fat tissue can interfere and block our lymphatic system. This bodily system is crucial to balance fluids and help your body fight against infections. When our lymph fluid becomes blocked, lymphedema can occur and lead to future health issues such as infections, fibrosis, and hardened skin if left untreated. Fortunately, you can reduce these symptoms through lymphatic drainage massages.

Subcutaneous Fat Tissue

Lipedema is marked by the buildup of subcutaneous fat tissue. Unlike regular fat tissue, subcutaneous fat tissue cannot be reduced with standard diet and exercise. Instead, treatments like liposuction are better able to reduce the symptoms of lipedema. Dr. Wright is a leading liposuction provider for lipedema and can help you reduce its appearance today. By visiting one of our local offices, you can understand your treatment plan through a free consultation and see how your lipedema symptoms can be reduced. While lipedema is a lifelong condition, you can live more easily through a custom treatment plan.

While a variety of treatment options currently exist to help alleviate and reduce the symptoms of lipedema, it is often lymph sparing liposuction that provides the biggest change. Lymph sparing liposuction is often recommended for individuals diagnosed with lipedema who have not experienced significant results with initial treatment options. Lipedema left untreated, can cause significant damage to the body. When this is the case, we recommend lymph sparing liposuction.

What is Lymph Sparing Liposuction?

Lymph sparing liposuction is a minimally invasive treatment that uses high pressured water to loosen up lipedema fat tissue. Suction removes the fat tissue and does so in a way that makes sure no damage is made to any lymphatics or nerves. More severe cases of lipedema may require multiple sessions to achieve the desired level of symptom reduction.

Treatable Symptoms with Lymph Sparing Liposuction

Lymph sparing liposuction can treat a variety of symptoms that are commonly associated with lipedema.

Fat Buildup – Perhaps the most noticeable symptom of lipedema that lymph sparing liposuction can treat is the amount of lipedema fat content. Lipedema is associated with subcutaneous fat tissue that cannot be treated through diet and exercise alone. Lymph sparing liposuction is a fat reduction procedure that will reduce the appearance of this fat buildup. The goal for most individuals with lipedema is to appear as close as possible their appearance before the onset of lipedema.

Mobility – The more severe cases of lipedema are commonly associated with limited mobility, making it difficult for the patient to get around. The subcutaneous fat tissue restricts mobility in the legs and greatly impacts quality of life. By removing a significant amount of fat tissue in the legs, it will be easier for those with lipedema to get around.

Restricted Blood Flow – Not only will subcutaneous fat tissue make it difficult to move but also restrict the blood flow in our veins/arteries. Blood flow in your veins will be encouraged by reducing the amount of fat tissue around them.

Getting Your Lipedema Treatment

If you believe you are experiencing lipedema symptoms, make sure to seek the treatment you deserve. Dr. Wright leads a team of qualified individuals in St. Louis that can help you receive the highest quality lipedema treatment, including lymph sparing liposuction. The treatment you need starts with a simple phone call today!

An excerpt by Dr. Thomas Wright for the Vein Magazine discussing lipedema and its diagnosis. 

vein_v12i1_lipedema_comp3