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, including 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 web page then you probably have some idea about what it is, and may have read a bit about it on Wikipedia or on some other online resource. With this article I hope to offer you much more:
- An understanding of the biology underlying the condition
- How to self-diagnose lipedema and discuss your findings with your family doctor
- An understanding of how your symptoms may progress with time if they are not managed effectively
If you think you may have lipedema you can learn how to best manage it and prevent further progression of your symptoms here: Patient Guide: Treatment of Lipedema and Lipo-lymphedema. Unsure if you have lipedema? Keep reading below.
- 1 What does ‘classic’ lipedema look like? What are the symptoms?
- 2 What causes lipedema?
- 3 Lipedema is a progressive condition and this makes it more complicated to diagnose.
- 4 Lipedema and lipo-lymphedema symptoms and stages – a more complete picture
- 5 Given the variety of symptoms, how is lipedema commonly diagnosed?
- 6 How do I self-diagnose lipedema and lipo-lymphedema, and how can I get a formal diagnosis?
- 7 References:
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:
- Lipedema occurs almost exclusively in women. But it has also been observed in men with hormonal imbalance or liver disease (Ref 1).
- 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).
- 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).
- 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.
- 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
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:
- Fat is composed of cells that require a lot of blood flow. 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.
- Fat tissue is under constant pressure to maintain fluid balance or swelling will result. 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).
- Fluid circulation in patients with lipedema appears to be abnormal, which may promote swelling. 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 in the skin of individuals with lipedema. This would further increase their susceptibility to excess fluid accumulation since tension created by elasticity in the skin acts to apply pressure on the underlying tissue, and this pressure helps fluid find its way into the lymphatic system and also helps it pump through the venous system upon muscle contraction. An inability to maintain fluid balance in fat tissue may be a core driver of lipedema. This would also explain why lipedema is more often observed in the lower body than the upper body:
- Fat tissue in the lower half of the body is under greater pressure to maintain fluid balance than the upper body, and so is more prone to swelling. 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 area. Fluid accumulation caused by gravity is the reason why even in people with healthy blood and lymphatic vessels, their 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 lipedema patients appear to have fluid circulation abnormalities that could exacerbate this swelling. This would suggest that patients with lipedema are more prone to accumulate excess fluid in their legs compared to their upper bodies, and more prone to leg swelling compared to people without lipedema.
- Chronic swelling appears to promote fat accumulation. As you can infer from the above, lipedema appears to cause abnormal fluid accumulation, and fat tissue in the lower body is particularly susceptible to it. Could chronic fluid accumulation in the legs of lipedema patients cause abnormal fat deposits to accumulate? This hypothesis seems plausible, although as you will see below, it is a bit of a chicken-and-egg problem. Swelling and its associated inflammatory processes have been shown to promote fat accumulation: chronic excessive fluid accumulation in tissues has been shown to lead to lymphatic insufficiency, which in turn is linked to a growth in the size of fat cells, and damage to fat tissue. This has been observed in patients with late-stage lymphedema, a lymphatic disorder that causes chronic swelling.
- Fat accumulation promotes even more fluid accumulation. As a tissue becomes larger, in particular fat tissue, it draws more blood flow. Unfortunately, the lymphatic drainage system has an upper limit on how much fluid it can remove from a tissue. In fact, it has been suggested that chronic obesity alone can initiate the onset of secondary lymphedema – a chronic swelling condition caused by excess fat deposits overburdening (and even damaging) the delicate vessels of the lymphatic system. This means that excessive fat accumulation caused by lipedema will increase fluid accumulation in the lower body, and if it exceeds the capacity of the local lymphatic system, swelling will result. This is why in late stage lipedema (also known as lipo-lymphedema) excess fat is present alongside significant swelling.
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 short, fat in the lower body is naturally susceptible to excess fluid accumulation (swelling), even in normal adults. But this susceptibility is made worse in lipedema patients who have excess fat, and also small vessel abnormalities. 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, but also fluid swelling.
This also offers a rationale for including compression garments in the ongoing management of lipedema. Although compression garments cannot reduce the amount of fat already present, they can help decrease fluid accumulation and prevent further disease progression. Click here to learn more about using compression garments for the treatment of lipedema. In the absence of getting personalized advice from a CDT therapist, there are a number of more “generic” garments that appear to be reasonable options, for example: the Bioflect Compression Legging offers a mild level of compression (12-17 mmHg), which may be a good place to start for individuals who have never worn compression before – see Figure 2 below. [Small disclaimer: if you purchase a garment through this link we may receive a very small fee which we use to support our blog. But feel free to look around for a garment that suits you best. Better yet, ask a local CDT therapist for personalized advice before purchasing a garment.]
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:
- 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.
- There is no excess fat or swelling in the ankles or feet.
- Skin appears healthy and is not discoloured.
- 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.
- 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.
- 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.
- “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.
- 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 3).
- 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.
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:
- Fist-sized lumps of fat can begin to develop in the affected area.
- 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.
- 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:
- Thick and hardened skin with some discolouration.
- Legs are no longer symmetrical. Large deformed lumps of fat have developed asymmetrically on the legs which can impede normal movement of the limb
- 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?
First off, if you have unexplained swelling that has appeared very 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.
As you can see from people’s comments below, it can be difficult for lipedema sufferers to get a correct and timely diagnosis. Unfortunately there is no simple test, so diagnosing it often requires a bit of detective work.
If you suspect you do have this condition, use the strategy I outline below to attempt to self-diagnose it. Many family doctors have limited knowledge of lipedema and so your self-investigations could give you a big leg up on getting a formal diagnosis. A self-diagnosis obviously can’t replace a formal diagnosis by a knowledgeable 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. Alternatively, seek out a health professional knowledgable about lipedema directly if you can.
Here’s how you can self-diagnosis lipedema and lipo-lymphedema, as well as effectively seek out a formal diagnosis:
- Find out if you have a family history of the condition.
- Familiarize yourself with the stages of lipedema described above and the associated symptoms.
- Investigate your symptoms and write them down. 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.
- How have your symptoms changed over time?
- 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.
- 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 your findings with your family doctor.
- Discuss your symptom timeline and family history with your doctor, and let them know that you believe you have lipedema. Be patient with your physician, as they may have very limited knowledge of lipedema and even less experience seeing it first-hand. 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.
- If your doctor is stumped by your symptoms or feels they lack sufficient knowledge about lipedema, you may wish to ask for a referral or seek out a second opinion.
If you suspect you have lipedema you can learn about how to manage it and prevent further symptom progression here: Patient Guide: Treatment of Lipedema and Lipo-Lymphedema.
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- Weissleder H., Schuchhardt C. Lymphedema diagnosis and therapy. 4th Germany: Viavital Verlag. 2008 p294 – 323.