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! 

If you are dealing with the symptoms of lipedema, you may notice relief when you perform simple exercises such as deep breathing on a regular basis. The lymphatic fluid in our bodies does not circulate on its own with a “pump” such as our blood does through the circulatory system. Instead, our lymph flow can achieve a greater balance when we stimulate our muscles and joints with soft activities. Deep breathing is one such activity that can offer benefits, including decongestion in the lymphatic system.

What Are Deep Breathing Exercises?

The term ‘deep breathing’ has a variety of definitions. When we discuss deep breathing exercises, we are specifically discussing abdominal or diaphragmatic exercises that stimulate the lymphatic structures of the body. These exercises can help clear your lymph stream by creating a space of negative pressure that will help flush out fluid into your venous circulation from the lymph system. Drainage is further assisted whenever this lymph fluid from our lower extremities or legs pass through our lymphatic structures.

Deep Breathing Exercises You Can Do at Home

Now that you understand a little more about what deep breathing exercises can do for you, it is time to discuss which specific exercises can easily be done at home. That’s right, you can enjoy the benefits of deep breathing exercises without having to leave the comfort of your home.

Our deep breathing exercise starts by laying on a flat surface with your knees bent and head supported upward; a pillow under your legs can help provide additional support to make this position easier. Make sure to have a hand on your abdomen and upper chest so you can feel as your diaphragm moves during the exercise.

Next, inhale slowly through the nose; you should begin to feel your stomach rise up in your hand while your chest remains still. Begin tightening your stomach muscles and let the muscles go as you begin to exhale. When exhaling, let out your breath through pursed lips. Your chest should continue to remain as still as possible.

This exercise should be practiced three to four times a day, and each session should last five to 10 minutes. Dizziness and mild discomfort are expected during the exercise; if you do not experience these symptoms during the initial five to 10 minutes, make sure you increase the length of the exercise.

Receive Professional Care

This breathing exercise is just one step in a full range of available therapies for lipedema. By following Dr. Wright’s established recommendations, you can begin to experience relief from debilitating symptoms of lipedema. 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
 

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.