Lipedema (sometimes called “lipoedema”, or more accurately “lipalgia”) is a chronic condition that causes an abnormal accumulation of painful adipose tissue (fat) in specific areas of the body (typically the legs). This condition is frequently accompanied by obesity and psychological vulnerability / distress, and less frequently by fluid swelling commonly (and again, inaccurately) referred to as “lipo-lymphedema”. In reality, sufferers of lipedema are actually a heterogenous group of individuals dealing with lipedema plus or minus the related conditions of obesity and lymphedema.
Individuals with lipedema are often misdiagnosed as simply being overweight, or their condition is mistaken to be a different swelling condition known as lymphedema.
Rather, lipedema is its own distinct condition, and a non-trivial one. Lipedema is a chronic and chronically misunderstood disorder with unique health implications. A “typical” sufferer of lipedema appears to have a disproportionately overweight lower body as compared to their upper body, which is also accompanied by pain. Patients with lipedema are seldom “typical”, and the abnormal accumulation of fat is only the most visually obvious symptom. If aggravating factors such as high body weight / obesity are unmanaged, symptoms will invariably worsen. Management requires ongoing pain control and lifestyle intervention to alleviate the symptoms and avoid the possibility of more advanced dysfunction including ‘lipo-lymphedema’, a combination of lipedema, obesity and lymphedema.
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 more:
- An understanding of the biology underlying the condition
- How to self-diagnose lipedema and lipo-lymphedema and discuss your findings with your family doctor
- An understanding of how your symptoms may worsen with time if aggravating factors 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.
What does ‘classic’ lipedema look like? What are the symptoms?
The “classic” presentation of lipedema is a woman with a small upper body and a disproportionately fatty lower body where the fat is painful. However, there is usually more to it than that. There are also non-classical presentations, symptoms that only appear at a certain “stages” of disease “progression” (as it turns out lipedema doesn’t really have stages or progression – more on this below), and symptoms that are shared with other conditions. Let’s begin by taking a closer look at the classic symptoms of lipedema:
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 may be 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…
This is because the main symptoms of lipedema (abnormal fat accumulation and pain) can be made much worse by additional ‘normal’ weight gain, as well as by psychological factors including stress and depression that enhance pain sensitivity and diminish general health.
If general health and fitness are not maintained at current levels for an individual with lipedema (body weight and emotional health, specifically) the lipedema symptoms of excessive fat deposits and pain will typically progressively worsen hand-in-hand with increased body weight and/or psychological distress. Contrary to popular opinion, the available evidence suggests that lipedema is likely not a “progressive” disease in the medical sense – meaning that it should not worsen on its own if everything else is unchanged. However, lipedema frequently does worsen with time due to the general trend toward increasing body weight and obesity (which is itself a progressive disease) with age. Psychological distress is often also a progressive disorder, one that typically amplifies feelings of pain and diminishes willpower and general health. In cases of considerable fat accumulation, fluid can also begin to accumulate in the tissue, exaggerating swelling and creating further health complications. This so-called ‘lipo-lymphedema stage’ appears to actually be the onset of what we would consider obesity-induced lymphedema – an unrelated condition caused by sufficient fat deposits that obstruct transport of lymph fluid out of the tissue.
To understand which condition(s) you have, it’s helpful to understand the link between lipedema, obesity, and lymphedema.
What causes lipedema and how are obesity and lymphedema linked?
Why do some women get lipedema 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). However, 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 and/or fat accumulation. Whatever the underlying biological mechanism, an initial accumulation of fat appears to initiate the development of abnormal fat deposits and pain. Not surprisingly then, additional fat accumulation at any point later in life can intensify symptoms of lipedema, especially in the case of the onset of obesity.
This relationship between bodyweight and lipedema is reflected in the statistics. Numerous studies have demonstrated that the majority of patients diagnosed with lipedema in Europe and North America are also obese (somewhere in the range of 76% – 88% depending on the center), a rate of obesity that is far greater than in the general population (ref 5). The relationship between lipedema and obesity remains even after taking into consideration the fact that we should expect BMI to be higher in lipedema patients to begin with since they have a disproportionately high concentration of fat in the legs (ref 5). Patients with with the ‘classic’ lipedema presentation of a slim upper body and larger lower body (although visually striking) is actually quite rare – an observation that matches our own experiences at our clinics.
The observation that a period of fat accumulation tends to initiate lipedema combined with the discovery that obesity is exceptionally common in lipedema patients suggests that the underlying biological mechanism that predisposes women to developing lipedema is sensitive to body weight. Moreover, the symptoms of lipedema appear to correlate with body weight. As body weight increases, abnormal fat and pain tend to increase as well. Collectively, these observations suggests that weight gain not only helps initiate the onset of lipedema in women who are susceptible to it, but also dictates the severity and ‘progression’ of it. In contrast, there is no evidence of the corollary – we are not aware of any data or mechanism by which the condition of classic lipedema could lead to generalized obesity.
As with lipedema, obesity is also a strong exacerbator of lymphedema (lymph fluid accumulation/swelling), can induce the onset of lymphedema in patients predisposed to it, and at high enough levels of obesity, can even induce lymphedema in patients who have no known predisposing risk factors.
This means that people with lipedema tend towards higher body weight – which no doubt exaggerates their symptoms. Weight gain can also become progressive, and if it goes unchecked for long enough can eventually result in lymphedema. Furthermore, since lymphedema is more common in the extremities (in particular the legs where lipedema fat deposits are disproportionately high) and arises due to excessive adipose deposits physically obstructing lymphatic vessels, overweight lipedema sufferers are particularly sensitive to developing lymphedema. This common overlap may explain the existence of the term ‘lipo-lymphedema’ although we now know that this is actually two distinct conditions – obesity and lymphedema.
Lipedema appears to be a progressive condition (although it isn’t) and this makes it more complicated to diagnose.
Early lipedema starts out as lipohypertrophy (an abnormal accumulation of fat that is painfree) that eventually reaches the point of inducing pain, thereby achieving the definition of ‘lipedema’. As a result, the earliest onset of lipedema can be very difficult to differentiate from simple weight gain in otherwise healthy individuals. If the individual’s weight and health remain stable, it is likely that the lipedema would not worsen. In reality, it’s common for an individual’s general health and wellness not to remain static over their lifetime, and instead weight gain and obesity are common.
What causes lipedema to appear to “progress”?
Lipedema appears to progress due to the close connection between lipedema, obesity and lymphedema. To understand this, we need to know a little bit about the physiology of fat and fluid transport.
Here’s a brief explanation of how fat cells work, and how lipedema combined with excess fat deposits and fluid transport limitations in the lower extremities can work together to create a progressively worsening condition. While the full details remain unclear, a general picture has emerged that helps explain the cause and apparent progression of this group of conditions. As you will see, fluid transport 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). Consequently, 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 the 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 arises from lymphatic damage or congenital lymphatic abnormality (learn more here).
- Fluid circulation in patients with lipedema appears to be abnormal. The abnormal fat is painful, which is believed to be a result of hypoxic stress (low oxygen) and inflammation (ref 5, 6, 7). One explanation for hypoxia and inflammation in this fat tissue could be insufficient fluid transport. The blood vessels feeding the fat deposits in individuals with lipedema were observed in one study to be fragile and leaky, as are the small lymphatic vessels, suggesting that fat tissue in lipedema patients may be more prone to fluid accumulation (ref 1). There also appears to be less elasticity in the skin of individuals with lipedema. This might increase their susceptibility to poor fluid transport, as tension created by elasticity in the skin normally acts to apply pressure on the underlying tissue, which helps fluid find its way into the lymphatic and venous systems. However, contradicting this theory are studies that suggest lipedema sufferers do not typically have visible fluid buildup (as assessed by MRI). What has been shown in more recent studies, is that fluid is not typically seen as a component of the tissue unless obesity induced lymphedema is also present (ref 5). Regardless of whether or not fluid circulation is abnormal in lipedema on its own, in general, the accumulation of excessive fat can result in disrupted fluid transport and increase the risk of swelling and lymphedema onset.
- Fat tissue in the lower half of the body is under greater pressure to maintain fluid balance than the upper body, and thus 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 vessels and lymphatic vessels, their feet can have a bit more volume by the end of the day 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 disproportionately accumulate fat in the lower body (and may have blood vessel abnormalities on top of this), which may predispose them to swelling and lymphedema in their lower extremities.
- Chronic swelling appears to promote fat accumulation. Swelling and inflammatory processes have been linked to fat deposition in late-stage lymphedema where chronic excessive fluid accumulation appears to promote growth in the size of fat cells and an increase in the overall tissue (non-fluid) volume of the affected limb. It’s unclear whether inflammation and putative blood vessel abnormalities seen in lipedema patients may likewise be contributing to abnormal fat deposition, but since lipedema does not appear to progress on its own without additional weight gain as a catalyst, it remains a flawed hypothesis. Regardless, lipedema patients at risk of lymphedema have an additional incentive to prevent chronic swelling from taking hold.
- 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 is believed 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 combined with obesity 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 so-called ‘late stage’ lipedema, excess fat is present alongside obvious swelling. At this point the patient is really suffering from lipedema combined with obesity and lymphedema rather than so called ‘lipo-lymphedema’.
While there is still a lot of research needed to understand the underlying biology, the above observations suggest a close relationship between lipedema, obesity and lymphedema, as well as a physiological rationale for why lipedema can appear to progress to more advanced disease and “lipo-lymhedema”. In reality, three distinct but overlapping disease processes are at play.
The above also offers two rationales for the popular practice of including compression garments in the ongoing management of lipedema: for reducing pain, and for reducing fluid accumulation (when lymphedema is at risk or present). Studies have shown that compression garments can significantly reduce inflammatory processes and oxidative stress and improve microcirculation in patients with venous conditions and healthy individuals alike (ref 8, 9 and 10). This offers a clear mechanism for the pain reduction effects experienced by lipedema patients who wear compression garments. Compression garments have a clear role in managing fluid swelling, such as for lipedema sufferers who have enough concomitant obesity to be at risk of inducing lymphedema.
Although compression garments cannot reduce the amount of fat present, they can help decrease pain and prevent or manage swelling in those susceptible to, or who have, lymphedema. 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
As discussed above, the apparent progression of lipedema through distinct stages is more accurately explained by the interaction of three related conditions: lipedema, weight gain and obesity, and lymphedema. For the sake of clarity, we will continue to talk about the ‘stages’ of lipedema below, since this coincides not only with how lipedema is popularly understood, but also with the perception of the many patients who experience progression of their condition. However, we have added in the primary drivers of each stage (lipedema, obesity and lymphedema).
Signs and symptoms of three stages of lipedema:
- Stage I Lipedema
At this ‘stage’ the patient is suffering from lipedema alone and not obesity or lymphedema. However, the condition is made more pronounced by being overweight (which will result in more fat deposits and pain) and by mental health disorders including stress and depression (which will result in more pain).
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. With ongoing weight management Stage 1 lymphedema should not progress further. There is also no known mechanism or relationship whereby lipedema predispose individuals to general weight gain.
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 (or not significantly) 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 may be more susceptible to bruising do to a microvascular fragility in the tissue (blue spots can appear after minor events) and have inflammatory markers within the fat tissue. 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 foot near the toes. If Stemmer’s sign was positive, the flesh on the top of the toe instead feels solid and the skin can’t be separated to be pinched/lifted. 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
At this ‘stage’ the patient is actually suffering from lipedema combined with pronounced general body weight gain / obesity. No lymphedema is present. As with Stage 1, the patient’s condition is made worse by mental health disorders including stress and depression (resulting in more pain).
Without proper weight management Stage I lipedema will frequently progress to Stage II. Weight gain and obesity tend to be progressive, and this is the driving force behind lipedema ‘progression’. Stage II lipedema has the same symptoms as the first stage, except:
- Larger-sized lumps of fat can begin to develop in the affected areas.
- Fatty nodes can be felt easily. Instead of the fat feeling smooth, small fatty nodules can often be easily felt and are unevenly distributed in the tissue.
- The skin is uneven in appearance, often with a textured look, and can be discoloured.
3. Stage III Lipedema (aka lipo-lymphedema)
At this ‘stage’ the patient is actually suffering from lipedema combined with obesity and obesity induced lymphedema. As with Stage I and II, the patient’s condition is made worse by mental health disorders including stress and depression (resulting in more pain).
Advanced cases of lipedema typically take many years to develop (one estimate suggests on average this process can take 17 years, ref 1). Stage III lipedema is characterized by the following changes:
- Lymphedema swelling is present. Stemmer’s sign may be 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.
- Thick and hardened skin with some discolouration. Patients with advanced cases of lipedema (where lymphedema has also onset) can begin to see tissue hardening due to long-standing swelling and fibrosis, loss of skin elasticity, and additional fat deposition.
- Legs are no longer symmetrical. Large deformed lumps of fat and fibrotic tissue/swelling have developed asymmetrically on the legs which can impede normal movement of the limb.
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 as many as 11% of women suffer from the condition of lipedema (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 12).
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 doesn’t help that there are no standard protocols or diagnostic tests to diagnose lipedema at this time.
Lipedema, obesity and ‘lipo-lymphedema’ (lipedema with simultaneous 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, 12, 13). 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 13).
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 in your legs (or elsewhere).
As you can see from the numerous comments in the comments section 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’re seeking. Alternatively, seek out a health professional knowledgeable 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 and the related conditions of obesity and lymphedema 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. Are you having pain in the fatty tissue?
- How have your symptoms changed over time? Have you experienced periods of weight gain over your life, where your leg symptoms worsened concurrently?
- 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 time 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. Some specialists that may have a working knowledge of lipedema can include a vascular surgeon, a dermatologist, a plastic surgeon, or a physician that treats obesity-related conditions.
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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