Home » Rehab Science Blog » Lipedema » Self-Diagnosing Lipedema

Patient Guide to Self-Diagnosing Lipedema and Lipo-Lymphedema

Lipedema (or “lipoedema”) is a chronic condition that causes an abnormal accumulation of fat in specific areas of the body. This fat is accompanied by fluid swelling and other changes that may eventually culminate in lipo-lymphedema.

Individuals with lipedema are often misdiagnosed as simply being overweight, or their condition is mistaken to be a different swelling condition know as lymphedema.

But lipedema is its own distinct condition, and a non-trivial one. Lipedema is a chronic and progressive ailment with unique health implications. It requires ongoing symptom management to ease discomfort and prevent progression to more advanced stages that may include lipo-lymphedema (more on this later).

A “typical” sufferer of lipedema appears to have a disproportionately overweight lower body when compared to their upper body. But patients with lipedema are not always “typical”, and abnormal accumulation of fat is only the most obvious of the symptoms. Since it is a progressive condition, symptoms will also worsen and change with time.

Lipedema is surprisingly common, but not commonly known. If you’ve made it to this webpage then you probably have some idea about what it is, and may have read about it on Wikipedia or other online resources. With this post I hope to offer you:

  1. A deeper understanding of the biology underlying the condition
  2. A clearer picture of how to diagnose it in yourself
  3. A better idea of how your symptoms may progress with time if they are not managed effectively

What does ‘classic’ lipedema look like? What are the symptoms?

The classic presentation is a woman with a small upper body and a disproportionately fatty lower body. But there is more to it than this. There are also non-classical presentations, symptoms that depend on stage of disease progression, and symptoms that are shared with other conditions. Let’s begin by taking a closer look at the classic symptoms:

Classic symptoms of lipedema:

  1. Lipedema occurs almost exclusively in women. But it has also been observed in men with hormonal imbalance or liver disease (Ref 1).
  2. Lower body is affected. It usually presents as excessive fat accumulation in the lower body, starting at the top of the iliac crest (the bones at the waist), while the upper body remains thin. If the upper body appears proportionately obese, it is not likely to be lipedema. However, lipedema has also been shown to affect the arms in about 30% of these patients, and in these cases, it usually affects the upper arm (ref 2).
  3. The ankles and feet are not affected. The feet do not accumulate fat as with regular weight gain (BUT they can be affected by secondary swelling – more on this below), and a collar of fat can often be seen just above the ankles (see Figure 1).
  4. Fat accumulation is symmetrical. Both sides of the body are affected, just like with normal weight gain. There is not a common pattern to fat accumulation. It can make the legs look like columnar trunks, or lumpy. Deposits of fat can also appear just below the knee.
  5. Fat feels abnormal and painful. Unlike normal fat accumulation, fat areas resulting from lipedema tend to be very tender if you apply pressure, and are easy to bruise. The fat deposits can also hurt for no apparent reason, and the skin can become less elastic feeling
Woman with lipedema showing ankle collar of fat

Figure 1: Lipedema in a patient showing a typical presentation including disproportionate lower body accumulation of fat compared to the upper body, and a collar of fat at the ankles (photograph reproduced from ref 3).

 

But the symptoms of lipedema can be quite a bit more complicated…

Lipedema can also affect men in some cases. It is also not a static condition, but a progressive one. This means that the symptoms of the disease will typically start out mild and will gradually change and worsen if preventative steps are not taken.

Early lipedema can be very difficult to differentiate from simple weight gain in otherwise healthy individuals, whereas in advanced stages of lipedema, the condition can begin to take on additional characteristics including symptoms of the chronic swelling condition known as lymphedema. So the ease of correctly diagnosing lipedema changes with stage of presentation. More on this below, but first it is useful to understand what causes lipedema and its progression.

What causes lipedema?

The underlying cause of lipedema remains largely unknown.

Symptoms usually first begin to arise around the time puberty, but can also occur after pregnancy or during menopause, or during another life event that triggers significant hormonal changes. This implies a connection between onset and hormonal changes, which is not surprising given the role that female hormones (estrogen and progesterone) play in normal fat deposition. Fat cells (called adipocytes) have estrogen receptors (proteins in the cell membrane) that bind estrogen and direct cell behaviour.

Why do some women get it and others do not?  There appears to be a strong hereditary component to the disease. Women with close relatives that have lipedema are more likely to develop it themselves. 15% of patients with lipedema have a family-history of the disease (ref 4).

Lipedema is a progressive condition and this makes it more complicated to diagnose.

So do more advanced cases just have more fat?

Yes, more advanced cases typically have more fat accumulation. But there are other important changes that occur as well. To understand what happens as lipedema progresses, we need to know a little bit about the physiology of fat and the underlying abnormalities caused by lipedema.

What causes lipedema to progress?

Here’s a brief explanation of how fat cells work, and how lipedema might be disrupting normal function to create a progressively worsening condition. While the full details of this condition remain unclear, a general picture has emerged that helps explain the cause and progression of this condition. As you will see, excess fluid accumulation plays a critical role:

  1. Fat is composed of cells that require a lot of blood. Fat cells (known as adipocytes) synthesize, store, and metabolize (release the energy from) fat. With weight gain these cells do not increase in number, but rather increase in size. Fat cells are important and active in maintaining the balance of fats and carbohydrates in the blood, and they have a lot of blood capillaries feeding them (more so than even muscle). Thus, there is a lot of fluid exchange that occurs in fat.
  2. Fat tissue is under constant pressure to maintain fluid balance. A large amount of fluid is continuously entering fat tissue, and likewise, must be removed through the venous system (veins and venules) and lymphatic system (lymph vessels and lymph nodes). These systems work in tandem to continuously remove the accumulating fluid. If these systems are insufficient, swelling will result. For example, the chronic swelling condition known as lymphedema results from lymphatic damage or abnormality (learn more here).
  3. Fluid circulation in patients with lipedema appears to be abnormal. The blood vessels feeding the fat deposits in individuals with lipdema have been observed to be fragile and leaky, as are the small lymphatic vessels, suggesting that the fat tissue in lipedema patients may be prone to fluid accumulation (ref 1). There also appears to be less elasticity of the skin in lipedema, which further increases the susceptibility to excess fluid accumulation. Normally, the tension in the skin acts to apply pressure to the underlying tissue – helping fluid pump through the venous system and lymphatic system with muscle contraction.
  4. Fat tissue in the lower half of the body is under even greater pressure to maintain fluid balance. Gravity increases the accumulation of fluid in the lower body, especially in fat tissue. This increases the demands on the venous and lymphatic systems that drain fluid from this tissue. Fluid accumulation caused by gravity is why even healthy peoples’ feet can have a bit more volume at night than in the morning, and can swell with prolonged standing or sitting. So fat tissue in the lower body is disproportionately prone to swelling, and patients with lipedema are disproportionately prone to fat accumulation in the lower body.  The picture is beginning to suggest that
  5. Fat accumulation leads to even more fluid accumulation. If a tissue becomes larger, it requires more blood flow to keep it viable. Unfortunately, the lymphatic drainage system does not increase its capacity proportionately, and obesity has been linked to the development of obesity-related secondary lymphedema – a chronic swelling condition. In this way, lymphatic insufficiency can result from excessive fat deposits overburdening (and even damaging) the delicate vessels of the lymphatic system. In a similar fashion, increased fat accumulation caused by lipedema can also increase fluid accumulation in the lower body.
  6. Fluid accumulation leads to even more fat accumulation. As you can infer from the above, lipedema causes abnormal fluid accumulation, and the lower body is particularly susceptible to it. Unfortunately, the swelling and associated inflammatory processes appear to actually promote further fat accumulation, and here’s how: excessive fluid accumulation leads to lymphatic insufficiency, which in turn is linked to a growth in the size of fat cells, and damage to fat tissue. Similarly, fat deposition also occurs in later stages of the lymphatic disorder known as lymphedema.

While there is still a lot of research needed to understand the underlying biology, the above observations suggest that a vicious cycle may be at work in lipedema sufferers. In a nut-shell, fat in the lower body is naturally susceptible to excess fluid accumulation (swelling), even in normal adults. But this is made worse by having excess fat, and by the small vessel abnormalities observed in lipedema patients. Unfortunately, prolonged fluid swelling is linked to further fat accumulation, which in turn causes more fluid accumulation – creating a progressively worsening condition. This vicious cycle appears to be one explanation for why the disease progressively worsens without effective management, and why this worsening doesn’t just result in more fat accumulation.

Lipedema and lipo-lymphedema symptoms and stages – a more complete picture

The symptoms of lipedema change with disease progression. At advanced stages, excessive fat accumulation and progressive lymphatic system insufficiency and damage induces secondary lymphedema and fluid accumulation in the area. This combined condition known as “lipo-lymphedema” exhibits symptoms of both lipedema and lower-limb lymphedema, including swelling below the ankles and in the feet, that is otherwise not normally observed in lipedema.

Conversely, patients with advanced cases of untreated lymphedema can begin to see tissue hardening due to fibrosis, loss of skin elasticity, and fat deposition. This means that advanced cases of both lipedema and lymphedema can share similar symptoms. To further complicate diagnosis, prolonged obesity in otherwise normal individuals also appears to induce the formation of secondary lymphedema, and the associated symptoms.

So is a patient suffering from lipedema, advanced lipedema (lipo-lymphedema), advanced lymphedema, obesity-induced secondary lymphedema, or simply obesity? To aid in the correct diagnosis (in particular for more advanced cases) we need to understand a patient’s symptom history and how their symptoms have changed with time. In other words, to accurately diagnose lipedema we need to understand a patient’s symptom history within the context of the 3 stages of the disease (ref 1):

Signs and symptoms of the three stages of lipedema:

1. Stage I Lipedema

At this stage appearance alone cannot be used to distinguish between lipedema and a healthy individual that is carrying more fat in their legs. But patient appearance in conjunction with the other characteristics of Stage 1 lipedema can be used to effectively rule-in or rule-out the condition in many cases.

Characteristics of Stage I Lipedema:

  1. Legs appear to have excess fat that is disproportionate to the upper body, and weight loss does not decrease fat in the affected area. This fat affects both legs to the same extent, and is evenly distributed from the hips down to the ankles. Pads of fat can appear above and below the knees, making their normal shape hard to see.
  2. There is no excess fat or swelling in the ankles or feet.
  3. Skin appears healthy and is not discoloured.
  4. Fat is painful with pressure. Fat deposits caused by lipedema will often feel painful if pressure is applied, unlike for healthy women with fatter legs or women with lymphedema, neither of whom would typically find a similar pressure to be painful.
  5. Fat deposits may hurt spontaneously in some patients even without pressure or without being touched at all. This pain is not typically responsive to over the counter pain medication.
  6. Fat is abnormal. The fat deposits caused by lipedema are abnormal in other ways as well. The tissue is more susceptible to bruising do to a microvascular fragility in the tissue (blue spots can appear after minor events), inflammatory processes (which in turn cause further complications), and bacterial infections of the skin (“cellulitis”). Although it is soft, the fat may feel different when compared to other areas of fat on the upper body, and may include small evenly dispersed nodules of fat.
  7. “Stemmer’s sign” is negative. This means that you are able to pinch and lift the skin on the top of the toes near where they attach to the rest of the foot. If Stemmer’s sign was positive, the flesh on the top of the toe instead feels solid and the skin can’t be separated. This test looks for the presence of swelling and fibrotic tissue in the feet, which does not occur in Stage 1 Lipedema. Stemmer’s sign is positive in cases of lymphedema where the foot is affected.
  8. There is no “pitting” when finger or thumb pressure is applied to the area of fat. This is another test for swelling. If thumb pressure leaves an indent which gradually fills in and disappears, this is a sign that the swelling is fluid in nature rather than due to fat deposits (see Figure 2).
  9. Some temporary swelling in the ankles or feet may occur at the end of the day, but with elevation or sleep it tends to disappear in Stage 1 lipedema.
Legs showing pitting edema, an uncommon symptom of lipedema

Figure 2: “Pitting” edema in a patient with congestive heart failure (photograph reproduced from ref 5).

 

2. Stage II Lipedema

Without proper care Stage I Lipedema typically gradually progresses to Stage II. Stage II has the same symptoms as the first stage, except:

  1. Fist-sized lumps of fat can begin to develop in the affected area.
  2. Fatty nodes can be felt easily. Instead of the fat feeling smooth, small fatty nodules can now be easily felt and are unevenly distributed in the tissue.
  3. The skin is uneven in appearance, with a textured look, and can be discoloured.

3. Stage III Lipedema (aka lipo-lymphedema)

Advanced cases of lipedema take many years to develop (one estimate suggests on average this may take 17 years, ref 1). Stage III lipedema is characterized by the following changes:

  1. Thick and hardened skin with some discolouration.
  2. Legs are no longer symmetrical. Large deformed lumps of fat have developed asymmetrically on the legs which can impede normal movement of the limb
  3. Lymphedema is present. Stemmer’s sign is positive, and the backs of the ankles and feet are swollen, indicative of the presence of fluid caused by a secondary lymphatic insufficiency that has developed. This swelling does not go away after a night’s sleep, and has become chronic lymphedema. If this lymphedema is not treated it will advance through the stages of lymphedema, further disabling the patient.

Given the variety of symptoms, how is lipedema commonly diagnosed?

Generally speaking, not very well, and not very often. Even though it has been reported that 11% of women suffer from the condition (ref 1), appreciation and understanding of the disease is still limited. In fact, we don’t yet know for certain what the true prevalence is; published estimates vary widely from 1 in 72,000 to 1 in 5 women (ref 6).

Since lipedema is not very well known, it is often incorrectly diagnosed as simple obesity, or as primary lymphedema (a congenital form of lymphedema that often affects both sides of the body). It also doesn’t help that there are no standard protocols or diagnostic tests to diagnose lipedema at this time.

Lipedema and lipo-lymphedema are most effectively diagnosed by physical examination with palpation combined with an examination of patient clinical history and family history, rather than through diagnostic tests (ref 1,6,7).  Family history can be helpful because lipedema does have a hereditary component; it is estimated that 15% of people with lipedema have a family member with it (ref 7).

How do I self-diagnose lipedema and lipo-lymphedema, and how can I get a formal diagnosis?

If you have unexplained swelling that has appeared recently, please see a doctor immediately. There are many potential causes for unexplained swelling, and some of them can be very serious.

You should also see your family doctor to discuss any longstanding issues you’ve been having with swelling. But since it can sometimes be difficult for lipedema sufferers to get a correct and timely diagnosis, if you suspect you do have the condition, you should do some work on your own to self-diagnose it. A self-diagnosis obviously can’t replace a formal diagnosis by a qualified health professional, but if you can speak effectively about your symptoms you may be able to better direct your care and get the diagnosis you need.

Here’s how you can self-diagnosis lipedema and lipo-lymphedema, as well as effectively seek out a formal diagnosis:

  1. Find out if you have a family history of lipedema.
  2. Familiarize yourself with the stages of lipedema described above and the associated symptoms.
  3. Examine your symptoms. Which symptoms above are you currently experiencing? This includes feeling for textural differences between the fat in your affected area, and fat in other areas of your body. Do they feel different? Do your symptoms fit with one of the stages of lipedema above? Keep in mind that it can be hard to do a good objective assessment of one’s own body (even for health professionals), and especially without experience.
  4. How have your symptoms changed over time?
  5. Write down a timeline for your symptoms – when did you first notice something developing? What symptoms did you experience then, how have your symptoms progressed since then, and over what tim period? Do you have other symptoms that don’t fit into the above description? Make a record of those too.
  6. After doing the above you may be able to make a reasonable attempt at ruling-in or ruling-out the possibility that you have lipedema. The tricky part comes from the fact that there are other conditions that can cause similar symptoms, and this is why you should definitely discuss it with your family doctor.
  7. Discuss your symptom timeline and family history with your doctor, and bring up the topic of lipedema with them. Be patient with your physician, as they may have limited knowledge about lipedema and even less experience seeing it in their own patients. Conversely, they may believe your symptoms to be attributable to another condition altogether, and not in fact due to lipedema. In turn, you should be open to the possibility that you do not have lipedema, and that your symptoms are attributable to something else.
  8. If your doctor is stumped by your symptoms or feels they lack sufficient knowledge about lipedema, you may wish to ask for a referral to seek out a second opinion.

For more information please check out our Patient Guide: Treatment of Lipedema and Lipo-Lymphedema, as well as our upcoming post on helpful ways to differentiate lipedema from other forms of swelling.

Sharing is caring! Please feel free to share your experiences, questions or comments below.

References:

  1. Földi E., and Földi M. Földi’s Textbook of Lymphology. 3rd Germany: Elsevier GmbH. 2012 p364 – 369.
  2. Herpertz U. Krankheitsspektrum des Lipödems an einer lymphologischen Fachklinik – Erscheinungsformen, Mischbilder und Behandlungsmöglichkeiten. Vasomed 1997 5:301–307.
  3. Buck D.W, Herbst K.L. Lipedema: A Relatively Common Disease with Extremely Common Misconceptions. Plast Reconstr Surg Glob Open. 2016 Sep 28;4(9)
  4. Child A.H., Gordon K.D., Sharpe P., et al. Lipedema: an inherited condition. Am J Med Genet A. 2010. Apr;152A:970–6.
  5. Trayes K.P., Studdiford J.S. et al. Edema: Diagnosis and Management. Am Fam Physician. 2013 Jul 15;88(2):102-10.
  6. Reich-Schupke S., Altmeyer P., Stucker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33.
  7. Weissleder H., Schuchhardt C. Lymphedema diagnosis and therapy. 4th Germany: Viavital Verlag. 2008 p294 – 323.

8 Comments

  1. I live in Illinois. My doctor, nor any other doctor here seems to  have  heard of this , much less believes it. I even showed my doctor a series of photos at different ages and stages and he basically said this  was a “made up disease to help fat people feel better and just give money to the plastic surgeons who do liposuction.” Does anyone know a doctor  in Illinois that is familiar with Lipedema???

  2. Maria Maria says:

    Hi Lori
    I’m in the same boat as you. I can’t believe how nobody knows about this horrible disease. I was diagnosed with lymphedema by a vascular doctor that after doing tests on my veins and arteries they came back fine but I was still swelling bad and my legs would get heavy and hard in the changes of temperature. I’m not heavy, never been obese but I recall always having this huge legs with what I thought was cellulite. Never could wear a pair of short shorts because i was ashamed of my legs. This doctor referred me to a physical therapist that treats lymphedema patients. Supposedly is all about living with the disease and doing things to manage it. Getting massages at least once a week for lymphatic drainage. Good luck  

  3. Lindsay Davey Lindsay Davey says:

    Thank you Maria, for sharing your story. These comments are so helpful in letting others know they are not alone in their navigating of this condition, and its management. I wish you all the best Maria, and thank you again for your contribution.
    Lindsay Davey

  4. Jill Jill says:

    I was diagnosed in 2015 by a vein doctor in Naperville, IL. My appointment was less than 15 minutes, mind you, but I did get the “official” diagnosis of bilateral edema (u.s. health insurance still doesn’t have a lipedema code). I was prescribed compression stockings. MLD not a big help for me because I didn’t have a lot of fluid.

  5. Lindsay Davey Lindsay Davey says:

    Thank you for sharing Jill!
    Lindsay

  6. Jan R. Jan R. says:

    Jill, I live in Naperville. I’m wondering who was the doctor? My doctor doesn’t think lipodema is a thing and I suspect that I’m at stage 3. 

  7. Ann Ann says:

    For 10 years I was told that I just needed to lose weight but even when I lost weight I continued to have swelling in my legs. After refusing to except that I just needed to lose weight, I was sent to a vascular physician. He diagnosed me with leaky vein syndrome and also felt that something else was going on with my legs and referred me to a lymph edema therapist. I had surgery on both legs to take care of the vein issue. I did intense wrapping which lead to tendinitis in both legs and I was having more pain in my legs. I went to see a lymph edema doctor who finally gave me the diagnosis of lipo- lymphedema. She spent 1 1/2 hours taking my history, assessing my compression garments and examining my legs. She recommended HCG, which there is no research on how this impacts fluid. I did 2 rounds and had great results with the fluid in my legs. I could go up/down stairs easier and my legs felt so light. I also have shapely legs again but continue to struggle with swelling in my ankles. There needs to be more research done in this area and physicians need to not just say ‘ you just need to lose weight.’ 

  8. Lindsay Davey Lindsay Davey says:

    Thank you for your comment Ann. I am pleased to hear that after a long road of complex edema and pain, you found at least a partial solution with the help of a physician who provided the lipolymphedema diagnosis. Indeed, more research needs to be done on HCG and its potential to help individuals in your situation. I hope in the meantime with continued use of your compression garments, exercise, and manual lymphatic drainage, the residual swelling component that persists at your ankles will further improve. Wishing you all the best Ann, and thank you for your contribution on the conversation surrounding the various concurrent conditions that may be at play in individuals with a body weight challenge. I am sure this will encourage others to seek the counsel of a lymphedema therapist/lipo-lymphedema experienced practitioner who can provide other ideas for management. Sincerely, Lindsay Davey

Leave a Reply

Your email address will not be published.