Patient Guide to Self-Diagnosing Lipedema and Lipo-LymphedemaBy: Lindsay Davey, MScPT, MSc, CDT
March 15, 2022
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT
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.
Sharing is caring! Please feel free to share your experiences, questions or comments below.
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- Crescenzi R., Marton A., Donahue P.M.C., et al. Tissue sodium content is elevated in the skin and subcutaneous adipose tissue in women with lipedema. Obesity. 2018 26(2) p310–317. https://doi.org/10.1002/oby.22090
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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???
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
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.
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.
Thank you for sharing Jill!
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.
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.’
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
What is. HCG ??
Human Chorionic Gonadotropin. It’s a hormone that’s produced during pregnancy, but it has found recreational use in bodybuilders (used in conjunction with other steroids) and in the HCG diet. The rationale for using HCG as part of the so-called “HCG diet” is scientifically questionable, although I don’t know enough about it yet to comment on it’s potential utility in cases of lipedema…
I have a daughter who as a child was very thin. When she started puberty we noticed her pants size starting to change. By the age of 18-19, she stopped wearing shorts and stopped going swimming because her legs got so big. She is going to be turning 29 and is so depressed by her lower part of her body, that she told me all she wanted for Christmas was liposuction to take away her big legs. I’m so worried for her. Isn’t there anything she can do ?
I’m so sorry to hear of your daughter and her long-standing troubles with her legs. If you think there’s a chance it is lipedema, or primary lymphedema, or a combination, I would encourage you to visit her family doctor and ask to be referred to a specialist. This might be a plastic surgeon, or a vascular surgeon, depending on where you are located and what specialists exist in your area. They will be able to comment about your question about liposuction, but importantly, diagnose what is going on so that your daughter can move ahead with the appropriate management strategies. If a diagnosis is make, or even in the meantime, I would recommend you reach out to the Lymphedema Association in your area, or other supports, so that you and your daughter can create a support network for yourselves. Not knowing what the condition is is often the most stressful and burdensome, so I strongly encourage you to advocate with her family physician so that she sees someone who can provide an informed diagnosis. Wishing you all the best Pamela. Sincerely, Lindsay Davey
Hi to everyone
As a child I had thin legs, but as soon as I hit puberty my legs started to accumulate fat. My upper body is the opposite, I wear x-small shirts. In addition, I have varicose veins. Now I’m 46, and my legs heart, bruises easily, and are swelling. My Vascular doctor finally diagnosed me, but I don’t know were can I receive treatment. I live in Sarasota Fl. If anybody knows a place to go let me know
When I saw the picture in Figure 1 I said “Someone has taken a picture of my body”. I have recently been diagnosed with lipedema and primary lymphedema. I’m 63 years old. About 8 years ago I lost 50 pounds and had maintained that loss up until about 1 1/2 years ago when for some unexplained reason I quickly gained 10 pounds. My efforts to get back to goal weight were unsuccessful. My sister, a lymphedema therapist, had advised me to be evaluated but I wouldn’t listen. When both my knees started bothering me at the same time, I went to an orthopedic surgeon. His solution was knee replacement surgery. In discussing this with my sister, she convinced me to be formally evaluated before I considered surgery. Thank goodness I finally listened to her. She tracked down the lymphedema therapist in my area (Charlotte, NC). I requested a referral from my primary care doctor. The therapist diagnosed me and after 3 weeks of therapy, I have lost 3 inches in my legs and 5 pounds. Not that I’m thrilled with the diagnosis, I am thrilled to learn how to manage it. Most of all I’m happy to know why I couldn’t loose that wretched 10 pounds.
Thank you for sharing your story. I am thrilled to hear that you have a sister with such lymphedema expertise! What a lucky thing that is, and so pleased to hear that you found someone in Charlotte, NC that has been such a help to you. When it comes to lipedema and primary lymphedema, knowledge really is power, as I am sure you know feel as well. As you say, knowing how to manage it can really make all the difference. Thank you again for contributing to this blog, so that others can read about your experience of the weight loss, then gain, knee pain, and subsequent diagnosis and treatment. Well done Lesa! Wishing you all the best, Lindsay Davey
A few years ago, after giving birth to my 2nd child, I noticed my quad area bulky. I thought for a split second it was due to me working out. Then, I felt my other leg, and it didn’t have that bulk. I went to my Dr, even got a sonogram, only for her to say, “that’s how your fat will lay.” I continued on with life (and my hideous legs), and then got pregnant last yr (2017). My mass got bigger as I gained weight, but now it started to get numb, amd tingle, and bw tender to the touch. My gyno chalked it up to weight gain during pregnancy, and that it’ll leave once I give birth. I gave birth, tingle sensation, numbness, and minor pain still present. My GP sent me for a CT scan. The scan was normal, just showed extra fat. I was then referred to a physical therapist who has temporarily diagnosed me with lipedema. I am to start a manual drainage therapy, and possibly wear compression. My question is, does this therapy really work in decreasing the mass, and further preventing it from growing? I also read somewhere (on a site for treatment in the Netherlands) that compressiom does not help. Can anyone give me suggestions, tips, encouragement? I am trying to stay positive, and am hoping this will work.
Thank you for your story, and for sharing your unique experience that has resulted in a working diagnosis of lipedema. It does indeed sound like an interesting presentation, given that it differs somewhat between your legs (as far as I understood from your comment), and that it is localized in one area (the ‘mass’ you speak of). I gather between the scans and the various physician assessments that they have deemed this deposition or mass of excess fat as not being a lipoma? These can be quite common, and can appear in various places in the body, typically palpable under the skin, and usually in isolation (not on both legs in the same place). I do hope that compression and drainage massage works to help, and with true lipedema cases it certainly can. Wishing you all the best, and perhaps someone else has a similar story to share of their own unique lipedema experience/diagnosis and what has worked for them. Sincerely, Lindsay Davey
Thank you so much Lindsay for your guide. I will be sharing it with our patients.
I don’t want to intrude in your presentation, but considering how many ladies have been misdiagnosed I want to share my knowledge in the field of Lymphedema, Lipedema and/orLipo/lymphedema for anyone that resides in the area of New Jersey. As a certified lymphedema therapist, I have been treating Lipedema as well as lymphedema cases for years and can assist anyone looking for proper diagnosis.
Once again, thank you for this wonderful and dedicated topic. Much success to you and your future endeavors.
Many thanks for your positive feedback Ana. Wishing you the very best as well!
i am doctor faten,40 age having lipedema since puberty with two large lower limbs, i don,t recommend surgery at all, l,d like to know what is HCG diet
Hi Doctor Faten,
The HCG diet typically combines severe calorie restriction with injections of the hormone human chorionic gonadotropin. This diet was originally proposed in 1954. It was largely discredited 30 years later, and now it’s back to being trendy again. Despite all this time passing, there is still no reliable evidence that the HCG diet is more effective than simply caloric restriction alone, or that patients are able to keep the weight off. Further to this, it may increase the risk of certain health complications in some people. In summary, it probably doesn’t work, and likely poses a health risk for some patients. Personally, I would avoid it.
How does one locate a therapist with knowledge of lipedema so I can start working on mine? According to the pictures I am still in stage one and want to learn how to stop the progression. I live in Maryland.
I wish I had a person or organization to recommend. If you can connect with a CDT/CLT trained therapist in your area, they may have experience treating lipedema as well, and can offer insights for additional local resources for you. If you are at an early stage, then the Lymphedema Association of North America (LANA) has a Find a Therapist link, which might be a good place to start. For later stage cases, I often recommend they seek out a consultation with a vascular surgeon or dermatologist who has an interest in mixed edemas, wound care, and so on. Best of luck Priscilla!
OMGoddess! Thank You! Thank you so very very much for explaining what I have seen and felt happening to me for two decades! I think I’m in Stage 2… I’ve had swollen lymph nodes in my left arm pit on & off for almost 20 yrs…probably because I have Epstein-Barr virus & Herpes… but according to the tests… “it’s not swollen”…:( Yes…it is. Period…it hurts if I press it…for over a decade! The glands on the left side of my throat are constantly swelling and ebbing… I have to take Valtrex…which suppresses my immune system, so I have this fine line I try to balance between an outbreak and mono symptoms… for about 2 decades.
I have dieted on & off my entire life…& had an eating disorder…but the Irish side of my family… they’re all big women. I look just like them… Nothing would ever take the weight off my thighs…thunder thighs I call them! I have a big pocket at the knee that has always been there…since puberty…with these huge bat wing arms like my grandmother! Now I have noticed these little nodules under my skin all over…they are SO painful. My fat bruises SO easily…and it’s always been like that. I can just reach behind something where it’s a little tight and the next day I have a HUGE black and blue bruise on the inside of my upper arm! I bruise with a pinch. Not kidding. The fat cells and little nodules have become so painful. I can’t even stand my cat to walk over my leg… and I would have thought I was just obese… until I heard about this on a News channel one day. I am SO relieved to know that it’s not my imagination!… You described everything that is happening to me! And I’ve not been able to work since’99… I have severe Degenerative Disk Disease & chronic migraines… I’ve had carpal tunnel surgery in both hands & a cyst removed from my thumb joint from a cortisone shot for trigger finger. They took out a cyst the size of a pea! My skin does NOT like chemicals. So… among all these medical issues… that no one would even listen to me… now since 2006 I have developed Dermatofibroma… horrible fibrous bulbous very painful nodules on my skin… and now, just in the last year or two… I have developed Morgellons Disease. …and I have mental illness (BPD, anxiety, depression, PTSS, OCD)… and I don’t cut (the BPD)…I pick…it’s compulsive from anxiety. And of course, those are the two most itchy skin issues to have… I would have to cut off my hands not to pick at it! It itches because I have these very tiny white fibers coming out of those weepy places. They can be up to 6 or 8” long! That is NOT a hair! They are almost microscopic. And here is something you should note: I have noticed that there are more fibers and the sores are worse …where there is more fat! I have observed this over time… and I get a fibroma with even a scratch doing dishes… then it wants to get a big painful knot there…but if it’s a place with thin skin, it won’t take hold really. It takes years to get rid of them because they want to heal like a crater… it’s like there’s no healing from underneath… I’ll think it’s healed, & scratch a spot… there’s a huge pocket of blood underneath! Now I realize this is a long email… but I’m wondering if anyone else has issues like this Dermatofibroma as well? Morgellons? And does anyone have Herpes AND this Lipema? I should be a case study…lol… I have absolutely no idea how to stop this progression… as I said I believe I’m in Stage 2 and if I don’t sit with my feet up on and off through-out the day… my ankles swell… you can see the liquid settling there. And now I think I have Baker’s Cysts behind my knees! Ugh! I have been miserable for 40 years!…and I’m 53! And I cannot …absolutely cannot stand summer heat! I shop at night… I can’t take it… anyone else? So my question to the doctor…lol… having said all of this… is that I think the skin lesions are related to this Lipema…because it all seems to go together. Do you have any evidence or other patients who have developed these skin issues who have Lipema? Thank you for this summary… I’m going to print it out for my doctor! :) Feel free to contact me for more info… or to tell me info. I made an appt with a dermatologist but because of the new HMO Medicaid… I can’t get in until September… AND I have to drive an hour and a half to see someone! Oh, and my dad had terrible skin cancer…big tumors growing out like horns, & diabetes…(which I do not have…yet)… I didn’t have a chance…lol…Good luck with your research…I would love to be involved in this research.
I know…I already wrote one… but as I sit here thinking about this disease … I am FURIOUS! I’m furious at the stupid stick skinny PE teacher who tortured me and wouldn’t stop the girls from bullying and picking on me in the locker room! I refused to take PE for half of the year!…opting instead to do my homework after school in detention every day for MONTHS! And then I quit the first chance I got at 16. I’m furious at the doctors who told me it was MY FAULT! Who wouldn’t listen to me when I said something is WRONG! They dismissed me with that stupid God Complex like I’m an idiot because I’m on Welfare & Obese! (Note: I graduated college Phi Theta Kappa…with a 3.945 GPA!) I have such horrible PTSS from all of it that I don’t even like to leave the house! I’m alone all the time because I prefer my sanctuary over all the assholes out there who don’t know how to be nice to someone just because they’re fat! And I’m REALLY FURIOUS with that ortho guy I just saw about my knee… who took one look at me and wouldn’t even feel where I was trying to show him it hurt. He had already seen the x-ray and walked in and saw my sores and my weight and would NOT touch me where I needed him to… said there was no difference even though it was totally swollen… and then proceeded to push Atkins on me and said I needed to lose weight! OMG! What a jackass! I got the second opinion and they said yes, arthritis… so what about the back of my knee?! Finally… she checks…she feels, she listens to me…and says…you “probably” had a Baker’s Cyst that ruptured. Wow….still wouldn’t order an MRI! Well… the first doc that was an ass…he got YELPED! ;) The torture I have been through because of these Thunder Thighs and Bat Wing Arms… you can’t even imagine. I am emotionally scarred for life… broken… damaged…and no one would help me. I am suicidal half of the time and have been since childhood. People are cruel… hateful and mean… and I’ve had to learn to live alone because of the BPD… They have no idea what they did to me… because of a disease that I could not help. This was a BIRTH DEFECT… like the other birth defects I was born with. Please continue this research…please. Maybe if other doctors will actually look at this problem seriously…maybe in the future young girls hitting puberty will be diagnosed properly instead of making them STARVE themselves! My mother and all of those stupid diets that NEVER worked… EVER. And making me feel like crap because I couldn’t do it. It made my eating disorder worse after I got away from her! Everything would lessen…EXCEPT my thighs and my upper arms! Girls like me are the obvious target of all the kids who have crap parents and didn’t teach their children not to make fun of other people. Thank you for this forum. Truly.
Thank you for such a comprehensive explanation!!!
I have been living the lipedema nightmare for 50 years with no explanation.
I am angry that the medical field ignored us for so many years, but I am grateful that this new knowledge offers some hope of possible improvement.
My lipedema was from birth, there was never a time I didn’t have it. I have the exact shape as your photo above.
I wonder if there is a correlation with the fact that my mother was given a synthetic hormone drug called DES by Eli Lilly, while pregnant for me and got hit by a car.
DES was later banned in the 60’s when they discovered that it does not work to prevent miscarriages and causes major side effects to the next generations. This drug caused many horrific side effects to the patient’s offspring and even to the 3rd generation.
I lost over 100 lbs from my heaviest, but my legs are still heavy and constantly feeling strained. I still need to lose 30 lbs to get to my healthy weight though, but I reached a stopping point after losing 103 lbs… and don’t get me started on loose skin, joint replacements and unexplainable bruises!
I did take phentermine to help lose the 2nd half of the 103 lbs and I used the LA Weight Loss diet plans to lose the whole 103 lbs (they closed their centers but the diet plans are downloadable online) the weight came off consistently at 10 lbs per month, but then the weight loss stopped before I could lose the last 30 lbs. Most likely because that is the lipedema fat that is unreachable.
I understand that there is about 15 lbs of extra skin after losing that much weight, so I accounted for that, by adding 15 lbs to my healthy weight to set my goal weight.
I think lipedema patients try so hard to lose weight, but without knowledge of this disease, they just throw in the towel and give up. I know I did, and that was the reason I was so overweight… I believe the lipedema fat itself only accounted for 30 or 40 lbs. But when it makes your life miserable, and you can’t fight the fat, you just turn to food for comfort since it is a lost cause anyway.
Hopefully, your article will enlighten affected people and give them enough hope to set-up a plan and not give up.
If I had this knowledge 40 years ago, I would have fought harder to not let it progress! But who knew what we were fighting? Doctors just assumed we like to eat too much because medical schools ignored it as a disorder altogether.
One of my Doctors said “No it”s Just fat”! I’m now 75 and it is getting worse. My mother was the same. Have it in both the legs and arms which get sore to touch, bruise easily is non-pitting etc.
In Australia there is almost nothing known about this. My mother was like it but was told she was just fat/ It has been the same for me. One doctor said “No it isn’t anything. You are just fat!” I knew it was something different. Thank goodness my latest doctor realizes it is not. I have it in arms and legs and I always have bruised easily. It is sore, cold to touch and non-pitting. I’m now 75 it I noticed the change from around 38 years old. I am so disallusioned that the doctors don’t even want to know about it in Australia. Finally found one who listens at least.
Thank you for a very well researched and presented article that should help many women who are uncertain what is ‘wrong’ with their legs.
I have been diagnosed at the age of 12 and live with a progressive Lipoedema for 44 years now.
As I am completing menopause,I do consider surgery for the first time.
I wish everyone living with the condition a good life and like you all to know : it is possible !
Hi Lindsey ,
I guess you have no idea how many women you help by this post.I will be sharing it with our patients. Thank you for such a comprehensive explanation.
Thank you Barbara. We are so very pleased to help disseminate information about this meaningful topic. Thank you for your kind feedback. Best, Lindsay Davey
The US is ridiculously uninformed ! IM IN A CITY OF 1 MILLION, KNOWN FOR GREAT MED CARE…BUT THIS OR LYMPHEDEMA…ITS PATHETIC ! YAY CANADA! WONDER IF MAYO IN MN has listened to our friend (I HOPE WERE STILL FRIENDS !) up North ! Thank the Lord more women are in medicine, we, by nature, LISTEN and our extra sense of ” somethings not RIGHT here, etc ” I hope is not LOST in med schooll !
Women all over the world thsnk you. Those who can come yto you WILL!
I was misdiagnosed for years. Then I was diagnosed with Lymphedema. With no success from my therapist and Lymphedema specialist I stopped going. Then a co-worker told me of a therapist 45min away from me. Within 5 minutes of talking with her and a visual, she did a quick pinch of the skin on my big toe and told me I did not have lymphedema – I had Lipedema. Never hearing of this, I told her my symptoms and my therapy starts next week and I have an appt scheduled with a cardio-vascular specialist. Thank goodness I live in Northeast Ohio!
Such an interesting read. I always had “big” legs as a teenager despite walking 2 miles to school, riding and swimming every day and school sport. It caused me much unhappiness. My mother wondered if something was triggered by a kick to my stomach by a horse when I was younger. Now my legs are totally hideous – lumpy and mis-coloured and I am ashamed to show them. I have lost and put on weight several times – my legs do reduce but never become slim. My ankles and knees are very puffy – knees like footballs – and now I have knee pain. I know weight loss helps but I never get the slim legs that I so envy. Ankles are permanently swollen and worse in the summer. I am very depressed by this and my doctor who is very kind, has not even heard of the condition. Even if I do get a diagnosis, I cannot see what can be done. I cannot afford MLD regularly although I can see why it would help. If I ever have the money, I will go for liposuction to get rid of the loathsome lumps and bumps. It is a horrible condition and one that seems to garner very little awareness or research from the medical community. I live in the UK.
I’m so sorry to hear about your long battle with your legs in terms of their size, and persistent swelling. Indeed, as you say the knee pain can most likely be helped by weight loss (which I know you’ve tried, to no avail with the ankle and knee shape/size/swelling), strengthening your leg muscles, supportive footwear and sometimes bracing, as needed. But the swelling/possible lipedema is something that you’re right, not all family physicians are all that aware of, nor is there a ‘cure’ for this condition. What we suggest is to perform self massage as best you can, which could be shown to you by a CDT therapist even if only at a single visit. That, and compression that captures the areas you are swollen (legs including ankles but not necessarily the feet) can provide pain relief, and reduce the extent to which you may have swelling confounding the underlying lipedema (though I know you have not yet been formally diagnosed). Here is a link from our research science blog post, where you can see a photo of one such garment option, which our patients with lipedema have found helpful for some of their symptoms (you can read other reviews by lipedema patients from the link, as well).
I hope that helps Julia. Lipedema and idiopathic leg edema is frustrating indeed, in large part because there isn’t much awareness about these conditions. I wish you the very best of luck and hope that you can connect with a CDT therapist, or even a dermatologist, or vascular surgeon, who has at least some experience with lipedema patients and their unique needs and symptoms. Perhaps the compression will give you some relief as well, as many of our patients have found. Sincerely, Lindsay Davey
I had to read twice but i‘m still not sure. Originally from Germany i relocated about 6 Month ago to the US and trying to find answers for my symptoms. I saw quite some Doctors but mostly i was just a good laugh. I also got told that i should just go on a Diet but the thing is that i have a BMI of 20 and would not call my legs huge, rather unproportioned and „bubbly“ with knots under the skin, pain, swelling and sensitivity to the slightest pressure applied with extensive bruising. Is it possible that someone with my weight has Lympedema? Thank you
Thank you for your message, and I’m so sorry to hear that you have felt so unsupported and unvalidated in your search for answers. Yes, in my experience, while more difficult to diagnose, it is entirely possible that someone with a relatively high BMI can still have lipedema. Lipedema is a condition characterized by some of the symptoms your describe, and indeed, an experienced therapist could certainly help you navigate what might be available in terms of therapeutic approaches to take. Compression garments (as linked to in our blog on this topic) have proven helpful to some of our lipedema patients, providing a relatively light amount of compression with a softer garment style than is used for lymphedema patients. I hope this helps Christine, and I wish you all the best. Sincerely, Lindsay Davey
Thanks for this extensive explanation of Lipedema. I live in a small island nation in SE Asia near Indonesia with very limited medical care. I am 49 yrs old and have been experiencing very difficult perimenopause symptoms for the past year including endometrial hyperplasia. Though I am 5’6, physically active, and only weigh 110 pounds, my skinny tree trunk like legs have become very fatty below the knees and in the inner thighs. They are painful, burn, and bruise easily. I have had normal CBC and urinalysis results. I am meeting family in Bali in a couple weeks who are bringing compression tights from US. I am also going to try Lymphatic drainage massage while visiting Bali. I have searched to see if there are any Lipedema specialists in Indonesia, but have come up empty. My mother and grandmother had same experience, but never diagnosed. Any suggestions?
Thank you for your contribution, and it sounds as though you are a classic presentation of lipedema. I am hopeful that the compression garments being brought to you from your family in the US will provide you additional relief/comfort from any leg symptoms you may be experiencing along with the deposition of fatty tissue. The best resource that I am aware of for seeking a lymphedema therapist internationally, is the Vodder International website, which has a ‘find a therapist’ function, to search for a therapist by city name, or postal code. They could then be contacted to determine their familiarity with lipedema, if you have additional questions about it. I wish you the best of luck Angelina! Lindsay Davey
I too, had very big legs and more fat in the liwer part of my body. I had a bariatric surgery 2 years ago . I lost 60 kilos. Is it possible that i have lipedema ?? I am 59 kilos now and i still have big legs but smaller than before.
Thank you for your question. Were your legs disproportionately larger than the rest of your body pre-surgery, or, likely, perhaps difficult to say? Unfortunately, it’s impossible to say whether lipedema may be a factor in your particular case without actually assessing your limbs personally. It’s possible that this was a contributing factor to your weight distribution in your case – perhaps your surgeon could comment further, if you sought their consultation again. A plastic surgeon who is experienced in lipedema/limb liposuction could also possibly comment. I’m sorry I can’t be of better help Nim. Sincerely, Lindsay Davey
I have over the past year been perimenopausal and have now got two very sore fat pads just below my knees. They ache are cold and hurt when I walk. I don’t have big legs overall but they are getting bigger. I eat well and exercise regularly. I have had bone cans, xrays, blood tests, mri scans and nothing has shown up so am beginning to suspect the onset of lipodema – could this be the case?
I am so sorry to hear of your on-going challenges with your legs. It’s true that we do see some changes with the onset of menopause, as estrogen/hormonal effects are quite widespread and some women experience joint issues, fat distribution changes, and so on. Having said that, lipedema is not localized the way that you are describing here, at least, not in the classic sense. It is more likely to be a fatty tissue presentation that affects the entire lower legs, and/or upper legs as well, and not the feet. There is no pain association with classic lipedema, other than some sensitivity in some people to direct pressure on the skin in these areas. I wish I had more to suggest Jane, as it sounds as though you have certainly investigated your symptoms with vigor. An experienced physiotherapist would be able to weigh in on any mechanical issues that are going on, that may be contributing to the soreness at/below your knees (even in the absence of any marked findings on imaging studies). Wishing you luck with Jane, but the good news is it doesn’t sound to be a lipedema presentation in this case, based on what you’ve described. Sincerely, Lindsay Davey
Thank you! Thank you so much!! I actually cried while reading your article. Finally, I know it’s not all just my fault!! I always felt that people thought I was to lazy, not working hard enough, a bad eater, and this has been my life for 40 years! At the age of 14 my mother brought me to the Dr. and asked why my legs had become so large. Even though I was a very active (they were “normal” size until about the age of 13, puberty) . The Dr. had no answer and thought that I may have had large thigh muscles. It only continued to get worse from there. My hips, thighs, buttocks and upper arms continued to get bigger and as I got older and had children I put on weight. Over time I’ve tried many diets and at one time lost 110 lbs! I remember being so proud and my mother coming to visit and the first thing she said to me was “Your legs are still big though.” She wasn’t trying to be mean she was just stating the obvious. When I was 44 I had gastric bypass and lost 100lbs and went down to 144lbs, but still had abnormally large legs. My waist was 28″ but my thighs were each 24″ and my calfs were 17″! I was wearing a size xsmall/ small top but a size large on the bottom! All my life I’ve had to fit my pants to my lower half and not my waist; so I’ve always had to wear a belt and the my waist band would be so bleated that it looked like I was wearing a sack!! As for dresses, it was terrible!! If the dress fit the bottom it’s way to big on the top. I’ve always been so frustrated!! So now over the last year and a half the weight gain in my bottom half and my upper arms has started again!! I didn’t know what to do, I became depressed because I thought, here we go again!! I’m doing something wrong even though I hadn’t changed my eating or exercise!! Now I realize it’s probably because I’m going though menopause!! So I went to see my Dr. yesterday and she wasn’t really sure what I was talking about, she’d heard a little about it but that was it. She said the first thing to do was to get me diagnosed but unfortunately she doesn’t know what kind of Dr. to refer me to. She said she would need to talk to some of her colleagues and that if I coud do some investigation into as well that would help. Do I see a vascular surgeon or dermatologist, what kind of Dr. can diagnose this?? I live in Ottawa. Thank you for reading!
You certainly describe a common experience of our patients with lipedema. Thank you so much for sharing your story. I am pleased to hear that your physician is pursuing a referral to someone with more experience in the area – you’re right, this can be a dermatologist, a vascular surgeon, a physiatrist. a plastic surgeon – it really depends on the physician’s experience and familiarity with the condition. Haley Rehab in Ottawa is a lymphedema clinic (similar to ours), that you could try reaching out to, to ask them as to their experience seeing patients with lipedema, and specifically, if they know of which specialist in the Ottawa hospital network may have experience in lipedema as well. I wish you luck in furthering your understanding about your condition Shezza, and sharing your experience of symptoms over the years with our readers will surely strike a cord with many of them. Thank you again! Lindsay Davey
Hello, thank you for the informative post. I know it’s hard to answer these questions without a physical examination but I just wanted to hear your opinion anyway as I have been reading and worrying about this. Where would you say the line is drawn between what would be considered simply ‘pear shaped’ or bottom heavy as many women are, versus lipedema? Is there even a clear clinical distinction, or is it a spectrum of sorts that could progress at anytime? I am 36 with two kids, and have always had wide hips and bigger legs for my shape, and my younger sister has the exact same shape as well. My paternal grandmother had the same shape but was obese so I can’t remember whether her legs were out of proportion, but I remember her complaining of them aching all the time when she was older. My sister and myself are both at the lower end of a healthy weight and fairly thin on top, but with much heavier legs – though they’re not nearly as bad as what I see on lipedema pictures online. But we do both have that tree trunk shape to our legs, with fat that goes ‘around’ the knee rather than tapering towards it and ‘cankles’. However, although legs are the first place we gain fat in and the last one we lose, we HAVE been, up to this point, able to lose some weight in the legs as well – for myself, I had to be at an underweight BMI to have legs that looked normal for my body, but it was possible. Lately, perhaps as a factor of age, my weight has been creeping up without changes in diet, and seems to solely be settling in my legs, and I’ve also been prone to retaining more water in my legs and feet. I am concerned with whether I (and my sister) could actually have a mild case of lipedema that could get worse with age. Do you think it’s possible, or is it likely just my body shape and fat distribution pattern and not likely to progress? The other promising factor is I have no pain when pressing anywhere on my legs. Thank you very much for your time in reading this.
Hi Kate! Very valid questions indeed. You articulate your symptoms, and those of your sister’s, very well! It’s possible that it is more of a hereditary body shape presentation, yes, though it is also possible that it is a mild lipedema case. As you have said here, it’s ever so difficult to know for sure. The distribution being so different between your top calf and bottom half can be an indicator, yes. Aching in the legs isn’t typically an inclusion criteria for lipedema, though, if you have any venous issue alongside, it can be. I suppose my answer would be, both hypotheses are possible, yes, and only with an assessment of the tissue itself would a more clear diagnosis or clinical impression be made. Though, at the end of the day, in either case, hereditary body shape or hereditary fat distribution condition such as lipedema, I’m afraid there isn’t much that therapy can provide in terms of improving things from the perspective of where you hold your adipose tissue body-region-speaking, other than what you’ve already come to, which is (as best you’re able) maintaining a healthy body weight and not allowing excess fat to be a factor in your overall BMI (though it sounds as though you tend toward the lightweight end of the spectrum!). Wishing you luck in pursuing a consultation with someone who may be able to shed further light Kate. Sincerely, Lindsay Davey
I have been reading everything I can about Lipedema and I have not been able to get an official diagnosis. This site is very interesting with a lot of really good information that I have found to be helpful. I understand there is some controversy about the use of HCG for losing Lipedema fat and I can only speak about my own experience. With my doctor’s guidance and support, I have completed 3 rounds and am currently maintaining a 65lb loss. Maybe it doesn’t work for everyone, but it does and has worked for many patients with Lipedema. For those of us who have yoyo dieted for many years, we understand that with any diet there is a very high risk of gaining it back. What I have found to be different with HCG is that it only attacks my lippy abnormal fat. My upper body has remained the same size and I am down 3 pant sizes. HCG has been a game changer for me, as it has allowed me to maintain my mobility so that I can still do the things I want to do. Other recommended treatments for Lipedema have also become a very important part of my daily routine, water aerobics, dry brushing, lymphatic massage and compression. All of these things together have changed my life both physically and emotionally. I share this to encourage others to search and find what works for you.
Thank you for sharing your experience Betty Jo! Very sound advice, to seek what works best for each individual. Congratulations on achieving such great weight loss and committing to your daily self-care to manage your condition as best you can. Wishing you continued success! Lindsay Davey
Hi Lindsay, I am currently under the Lymphedema Specialist at Mount Vernon Hospital, before going to this hospital I first saw a Consultant concerning my problems with Varicose veins and explaining that my legs have been very swollen,heavy and that I felt like I was walking like a robot,his answer was to stop sitting down watching TV all day and scoffing,I explained to him that I walk a dog most days and the other days i go swimming. I asked him to explain to me what was my diagnosis, he said I had Lymphedema Tarda and he would prescribe support hosiery,with no follow up appointment needed. I felt my condition was getting worse spoke to my Doctor he referred me to Mount Vernon who then diagnosed me with both Lymphedema and Lipodema. I try to do as much exercise as I can walking and swimming mainly.I have compression garments and they have helped,I am very grateful to Mount Vernon as they have helped me to understand the conditions, I have good day’s, bad days, and very bad days.I have been trying hard to lose weight and have just realised that certain foods are bad for these conditions,so my next step is to look at the foods again and start to change my diet to what helps best. I have found reading others stories very helpful.
Thank you Marilyn, and I commend you for persevering with your walking, your swimming, and your interest in healthy eating choices to further assist. Your perspective is meaningful and very wise – to acknowledge there will be better days and worse days, but that keeping up with your physical activity and being in pursuit of what makes a positive difference in your case, well worthy goals. Thank you for your excellent perspective here Marilyn. Best wishes, Lindsay Davey
Thank you so much for this article. I’m 33 and my BMI is 20. Ever since I remember, my body looked like two different persons merged together at waist. My upper body is not just slim but skinny, with legs so disproportionate, it looks awful. I also have lumps of fat under my skin on my thigh and mostly visible on my skinny arms. I’ve been struggling with body image issues as a teenager, I remember starving myself for weeks only to see more bones in my upper body and absolutely no change from the waist down. People close to me used to comment on my big legs and I even remember my grandmother saying: “you’re not fat, you just have fat legs.” Other girls at school used to wear shorts and skirts in the summer, while for me it’s always been long trousers and maxi dresses. I used to hate my legs so much I fantasied about just chopping the fat off with a kitchen knife. My parents never cared and there was no google, so I just accepted the life with my weird body. Few years ago I managed to save some money and decided to try liposuction on my lower legs. Omg what a difference it made. I can wear normal socks and cropped trousers for the first time in my life and it feels liberating. I know I still have a long way to go and although I can only wear baggy trousers with elasticated waistbands, I’m hoping to do another lipo on my upper legs when they get out of control. Thank you for educating people about this condition and reading people’s comments made me feel like I’m not alone.
I’m glad our article proved helpful to you Clare, and that reading the experiences of others who have shared their stories on this forum has provided you with a sense of community on this meaningful topic. Wishing you all the best! Lindsay Davey
Im a 53 year old male with lipedema. my case is unusual as it began after a couple of infections (viral and fungal) just over a year ago. Since mine didn’t begin as a hereditary disease its even harder to get doctors to believe it, let alone investigate it. One doctor did confirm i have all the classic symptoms, but since its so rare in men, there is no info on how to proceed. My heart goes out to all the ladies suffering from this. I don’t believe in diseases without cures, just cures that cant generate enough interest to find.
Thank you for sharing your story Frank. Indeed, it is more rare in men to experienced lipedema, and relaying your own experience will surely strike a chord with other readers out there. Wishing you great luck with your management and health, Lindsay Davey
After having some vein surgery earlier this year and then a follow-up just the other day, the PA in my Dr’s office asked if anyone had ever addressed my possibly having Lipedema. No, no one has ever said anything to me. This is just how my legs have always been. She referred me to someone right away. They haven’t contacted me yet but I feel as tho I want to cry. Finally, someone saw what I see on a daily basis and asked me about it. I’m trying to be positive. I’m going crazy now just reading everything that I can about this. Two of my daughters also have this going on. Please send out positive thoughts as I get some sort of diagnosis.
Thank you for your comments Joyce, and your story will resonate with others I am sure. Sending positive thoughts, Lindsay Davey
I am glad to have found your article. I have struggled with being the over weight child since after I hit puberty. My birthday is next week and I will be 44 years old. I can recall walking into a Nutrisystem center at 13 years old with my Mom and hearing a lady tell her I was “hippy”. I thought she meant a Hippie, not that she was referring to my actual hips. The thing is I was actually athletic and played several sports year round. I just always an average top, small waist, big butt, and thick thighs. After I had my daughter, I picked up weight but I also stopped playing sports and was just a mom. About 8 years ago I lost about 120 lbs (not necessarily a healthy way) while going through some very stressful times. Again, not much came off my butt, hips, or thighs. Eventually I was put on medication and that weight came back fast and fierce plus some. Fast forward to today, I have been working on getting myself in a good place mentally and healthy for the past 1.5 years. I have lost 70 lbs (the right way this time) but my pants size hasn’t budged much at all. Reality hit when I was in a wedding earlier this year and had to be sized for a dress. It came in and 3 different places refused to do alterations because they said the top and bottom of the dress were too different in size and it would ruin the dress to alter. I drove 3 hours to where I bought the dress originally the weekend before the wedding to have them do a rush job because I didn’t know what to do. Come to find out after losing approximately 35lbs my top was measuring 8 sizes smaller than my bottom! Since then my primary care doctor, a dermatologist, and an endocrinologist have all ordered tests in which I have been fighting with my insurance to approve one by one in order to get diagnosed. We started talking about lipedema but now I am hearing them saying possibly lipodystrophy. I am supposed to have an MRI and Ultrasound on my lower extremities before I get an official diagnosis. In the meantime my Endocrinologist is doing some more research on all of it along with my family history. I just want to be active again! I know that may sound petty compared to so many others but inside I am still an athlete. I don’t want to give up fighting to physically be one again while I still might be able to. Thanks for letting me share my experience so far.
Thank you for sharing your story Tanya. It sounds like you have put together a comprehensive team of experts to help diagnose your condition, or at least determine the contributing factors. I am pleased to hear you’ve found our articles useful/informative, and you certainly sound like you are informing yourself extensively on the subject, and all possible diagnoses at play. I wish you such luck with maintaining your healthy body weight, and congratulations on your more recent (and healthier) weight loss. Wishing you all the best with the upcoming imaging, and thank you again for sharing your experience. Lindsay Davey
I am writing to you from Australia. Although suffering with swelling of my feet and cold, heavy legs since the birth of my son 28 years ago, I was only diagnosed with lipo/lymphedema 18 months ago. I had consulted many general practioners during that time with no diagnosis. A friend recommended I see her physiotherapist, a lymphedema practioner.
I now attend clinical pilates classes, have lymphatic drainage massage and I wear compression garments. The best results however, are with a pump (Intermittent Pneumatic Compression System) that I use twice daily! I can actually feel relief when I use it. The pump was expensive but is convenient and seems to be halting progression of the condition.
Thank you Maggie. Yes, the pneumatic compression pumps may be helpful to some, and I’m glad to hear you have experienced relief with it. We tend to recommend it for those who have primary lymphedema, or lipolymphedema, where there is a swelling component at play. We always recommend that patients consult a lymphedema therapist before investing in a pump, to ensure they are the right candidate for such a device. Best wishes Maggie! Lindsay Davey
hi, i was born with FULL body lipodema, so both arms upper and lower, both legs upper and lower, abdomen, hips, breasts, scalp. i was not diagnosed for fifty years, i was regularly discriminated against, treated appallingly by medical proffessionals. told i was fat, wire my jaw up, don’t eat. eat less exercise more anxd you will lose weight. i have been classed a liar when no nutrionist or dieticians, or slimming world or exercise regiemes have worked ever. because all the liturature on this condition is so lacking, or vague, i get even more disbelief from medical proffessionals not believing i have FULL body. i was eventually diagnosed in St Gsorges London England under Pofessor Peter Moetimer team. i then had lipo-lymphedema, as i got acute pancreatitis wheich all most killed me, as a gall stone blocked the biliary duct causing pancretitus, they gave me so much fluid, which the pancreas needed, but it blew my legs lymphatics and i have since had lipo-lymphedema. i have had intermittent bandaging done, as not enough nurses and compression therapy, so very frustrating, as i have been housebound for 7 years and bedbound for 4 years, with lkttle mobility except to get on off commode from my hospital bed. all my life has been a fight. please Lindsay up date your informative piece above to include the rareity of FULL body lipodema in women, we get a hard press as it is, and ‘no’ liturature i have found states FULL body lipo-lymphedema, i get even more of a hard time. and we cannot see a hereditary link in my family either. thanks all for taking the time to read this, educating each other is so important to get the meassages out there. i have NEVER lost any weight, despite a plethora of diets, and exercise routines, only ever cm loss. thanks again. Cathy
Thank you Cathy, for sharing your story. I am so sorry to hear that you feel you have not been heard or understood by the nutritionists and dieticians and other health care practitioners you’ve seen. Indeed, the condition can certainly affect expansive areas of the body and multiple regions, particularly in later stages of the condition, and especially when lipo-lymphedema onsets. I hope that further research into lipedema, lipolymphedema, and primary lymphedema, will help illuminate better treatment options and at the very least inform our health care providers so that early signs are recognized and validated in their patients. Thank you for sharing your experience Cathy. Wishing you all the best, Lindsay Davey
Does lipedema fat weigh more than normal fat? After I had both my kids and was in my early 30’s, I was slim-ish and working out. I’m 5’4″ and have a medium to small frame, wore a size 9/10 but I weighed over 160 lbs! When I was in high school, before the symptoms started, I wore a size 12 to 14 and only weighed 130 lbs. Now I’m in my late 50’s and weigh over 200lbs. My lower body from just below my waist to below my knees is lumpy,bumpy, veiny and PAINFUL. And over the past few months I’ve noticed that the back of my upper arms are painful and sagging. I look at myself in the mirror and know I’m overweight, I wear between a 1x to 2x, but I shouldn’t weigh over 200 lbs!!
I’m pretty certain I’m stage 2 – and will have to talk to my doctor. But does the lipedema weigh more?
Thank you for your questions and for providing these details. I understand how difficult it is to navigate these lipedema and related adipose tissue conditions, but am encouraged to hear you plan to speak to your physician about your case. No, I am not aware that there is any difference in the composition or quality/nature of the adipose (fat) tissue that exists in a lipedema condition as compared to ‘normally’ distributed fat tissue, and as such, I do not believe there is a difference in how much it weighs, no. I wish you the very best in creating a plan of action with your physician regarding your lipedema and leg pain Laura. Compression options do exist that may provide symptomatic relief, for what it’s worth. Best, Lindsay Davey
in the weight of lipedema fat as compared to fat that is ‘normally’ distributed
I don’t know where to begin. I am so much pain
I’m so sorry to hear that Millicent. Please know that you are not alone in your lipedema/lipolymphedema journey, and I wish you great luck in connecting with someone in your community who can offer some suggestions, at least where your pain management is concerned as a starting point. With sincere good wishes, Lindsay Davey
My name is Julie and I live in So Arizona.
I only read the first 10 comments, but did not notice that anyone mentioned so I wanted to let you guys know that there are…
ENDOCRINOLOGY DOCTORS WHO SPECIALIZE IN
“ADIPOSE TISSUE DISORDER” Or “LIPODEMA” Etc…
I accidentally became aware of the existence this disorder while looking for an endocrinologist to see regarding an abnormal Cortisol lab test. Anyway the doctors title was
“ADIPOSE TISSUE DISORDER” and the description eluded that it is an “over active adipose tissue disorder”.
As soon as I saw that title I absolutely knew that I had it!
I asked to make an appt with her during the month of October last year and was given the earliest available was May 5 of 2020!
The scheduler said that her Dept was huge and super busy.
Well just yesterday I got a letter telling me that doctor left the employ of the huge University medical group down here and I now have to search for either her or another Endocrinology who specializes in “ADIPOSE TISSUE DISORDER”.
I also want to mention that I desperately want to try HCG!
This is because I remember that during my last pregnancy, 12 years ago, and the immediate 5 years afterwards, I lost a lot of weight! Like 40lbs the month after giving birth, I breast feed for almost 4 years and was the thinnest I’ve ever been! I remember that time In my life as always being in sheer amazement as to how breast feeding could help me lose so much weight!? I should’ve had kids earlier. But then the fat came back eventually and it came with a vengeance because that’s when the swelling started.
Since then I had…
1. undiagnosed ankle swelling for over 4 years…to the point that my
2. skin darkened Around ankles
3. I’ve had that vein removal surgery
4. Now I’ve been gaining more weight, I’m fatter than I’ve ever been
I went on the keto diet and lost 10lbs in the first month and am on month 2 now
I weighed 219lbs after Xmas.
The most I ever weighted prior to this recent weight gain was 190lbs after childbirth.
I looked my best at 165-170lbs.
I’m 5’6″ and once, a long time ago, I weighed 150lbs and I looked like a sucked up crack addict.
Regardless of weight, my legs and especially my knees have always been fat and lumpy! It’s definitely hereditary as my dad’s mom and my mother both have huge butts, upper thighs and knees. My gay cells do hurt when touched, always thot that was weird until now. I’ve never been able to run because off the pain in my legs and the pain from the day on my legs!
If anyone knows of a good doctor in Tucson (I live 2hrs South of Tucson) or Phoenix who can help me, please reach out. I am in the last stages and fear the lasting damage.
I already cut out my friends out or doing anything anymore… At first because none of my shoes fit me and other than the embarrassment of dark skin and elephantiasis ankles, the pain of walking and looking like a senior citizen while walkingwas too much. I used to cycle for exercise but now I’ve gained so much weight that the bikes tires always go flat when I get on it and the pain in my joints is off the chart! That I just gave up, but I don’t want to! I want my life back or at least “a life” back. I want the ability to be spontaneous, dress up and have shoes AND clothes that fit so that I can have a social life again!
I am interested in online doctors too!
Does lipedema make your affected area feel itchy like bugs are under skin? I was recently diagnosed with lyphedema but i believe it is more lipedema
I find that our patients, both those with lymphedema, and lipedema, describe a multitude of different symptoms in their affected legs. Itching is certainly something we have heard before, though I can’t say that it necessarily fits with one particular condition over the other. I wish I could say that the symptomatic experience of either of these conditions is black and white. I hope you will find the other comments and articles in our blog to be helpful with your new diagnosis Faye. All the best, Lindsay Davey
I’m Fatimah from Saudia Arabia, i live in Al-Madinah, i just become certified lymphedema therapist, i wish i can help every patient that reaches me.
Thank you for this valuable article.
As many of the others have expressed, it is such a relief to finally realize that this is an actual problem. I have spent many years trying to work this out, mistaking the swelling/puffiness/bruising for inflammation. . As I do not have much faith in Western medicine, I have tried to go more on natural interventions such as cleansing diets, enemas, fasting, meditation, chinese medicine, mild exercise, anti-fungals etc, etc to reduce my inflammation & wondering why it was not going away. Now I know it is Lipedema I feel much more able to cope with it.
I would like to share that although I have had this since my teens, and have just had my menopause 4 years ago (57 this year), I was able to halt further development of this illness and is still maintaining at Stage 1. After menopause I noticed a small increase in the thighs and hips area but I have hardly any other health issues. I attribute this to the many natural therapies I’ve tried. For those that are really suffering, I can suggest trying a Certified Naturopath or Herbal or Holistic doctor that maybe able to help you out with natural herbal support & possibly some fasting combined with enemas. This really made me feel much better.
Wishing you all the best on your healing journey !
Thank you for this meaningful first-hand account Iona. We are always so pleased to hear of positive management strategies that have proven helpful to our readers. Best, Lindsay Davey
Hi! Thank you for this wonderful article. I’ve had a tiny waist and fatty legs and upper arms since I was around 11 years old (still a healthy body just disproportionate). My belly was also fatter then but that excess fat went away with exercise. I’ve also had two hip surgeries (right hip when I was 21 and left hip when I was 23). I’ve had swelling in the hip area (they said it’s bursitis) since my teenage years but it’s difficult to say if it started after my dance injuries or before. All I know is that even with intense box training three times a week and a diet my legs and arms didn’t really change. After surgeries when I had therapy in spa I had manual lymph drainage every day for two weeks and it helped a lot with the swelling. My legs hurt under pressure (I can’t have a real massage because it hurts to the point where I cry). And the thing is I don’t know if this is connected with my hip injuries (they have reoccurred and I will have to undergo surgeries again) or if this is because I have stage 1 lipedema. It’s slowly getting a bit too much for me because I have a couple of other diagnoses and they were looking at my DNA if I have a genetic disorder of connective tissue.
If you have any advice for me or an opinion, guidelines… I would be extremely grateful.
Thank you for doing what you do!
I wish you all the best
I thank you for your thoughtful post and all the details you’ve provided. In my opinion, no, the hip injuries (that you sustained as a dancer, from what I can tell) are not related to lipedema-type clinical findings. We do not see a higher proportion of lipedema cases in those with connective tissue disorders (to my knowledge), or ligament laxity of a lesser extent. It may very well be that you have the two things going on concurrently. I’m so sorry to hear that more hip surgeries are in your future, I do hope that they can stabilize things and that you can get some meaningful relief in that area. The lymphatic massage for the legs can indeed be helpful if your fatty-limb symptoms have a swelling component of a lymphatic nature (which can indeed present together), however bursitis or local hip swelling is, again, of an orthopaedic nature, I would presume, and unrelated.
Best wishes Naja,
Please tell me if there is no pain under pressure, can we exclude lipedema?
No, not all patients with lipedema have pain with pressure or touch in the affected limbs/body area, so I wouldn’t say that you would exclude the possibility of lipedema as a diagnosis if you don’t have pain with applied pressure.
I hope that’s helpful!
I am now 68yrs.old. I have had issues with my legs off and on since adolescence. After reading a lot of the article and comments, I’m pretty sure I am in probably at least stage 3 of lipedema / lympedema. So at this age I could probably fill up a few pages at minimum of my experiences. Younger years say 20 and under I didn’t have a weight problem but I had the pain and ache problems in my legs, it would come and go at different times. I don’t know why. I had the aches at times so bad I could hardly sleep, the creepy crawling thing was very irritating. Leg pain for no reason. That was more of a problem in the past, then now. One of the forever and more lasting symptoms is the painful soreness when touching my legs, that one never goes away.
To me it seems as if I went through different stages at different times.
But for me now, I think the issue of fat is worse in my upper arms than my legs, but there too. The right arm is bigger than the left and in the inner arm I now have 3 rolls of fat that hangs and the bands are much deeper on the right arm than the left. (That probably qualifies me as in stage 4 ). I mentioned my arms first because I can not always hide them in clothes like I can with my legs. Also I don’t think that I read about others mentioning that their arms were affected too with this type of edema. Then again maybe I am at the wrong cite because from my neck down I have had unusual fat areas for a while. And from my waist up I’ve always worn at least a size larger … ex: xl top with a med or lg. bottom. Trying to buy clothing like a suit or dress was next to impossible from my teenage years til now. I’ve always had to buy separates even in regular sized clothing. And I’ve struggled with weight since my 20’s. But then around menopausal time, … I gained weight and it was EXTREMELY hard to get some of it off. ( I’m still struggling) That’s when the sagging pockets and rolls of fat (especially in my arms)started.
I’m not very good at writing, so what I want to know is if you think compression wear will help me at this time in my life?
I am a very spunky, young looking, agile person in her late 60’s that is not tired and sitting around In a rocking chair knitting.
I apologize for any errors.
Thank you for sharing your story here, and for highlight the symptoms that you experience in your arms, in addition to the legs. I am sorry to hear that you continue to experience the soreness with pressure applied to the legs – compression is thought to be able to help this particular feature, yes. A low level of compression is often all that is needed, and is typically well tolerated by our lipedema patients (15 – 20mmHg). Compression for the arms with the rolls that you describe would be challenging, and if you don’t have the same soreness issue, or overt swelling, you may not find arm compression to be particularly helpful. I hope that helps Elaine! I wish you the very best with your continued weight loss goals and the compression could be helpful for the leg pain, yes. We have a link in our blog that can direct you to some options if you’d like to start there. Best, Lindsay Davey
I’m 23 Years old – single – BMI: 23
I had neuro pain for 10 months and diagnosed as Parasthetica meralgia
Then I noticed a swelling in my thigh, I did an MRI and it shows a “subcutaneous fat tissue prominence”
Does that mean I have lipedema?
I feel pain when I touch it, it also get painful sometimes just by clothes
Please answer me I feel stressed..
Thank you for your question. It’s possible that with an MRI finding of subcutaneous fat tissue prominence that yes, lipedema could be at play. Do you have the prominence only in the one thigh? Lipedema is typically a symmetrical condition (meaning, typically both thighs would have the same feature of fatty tissue deposition). I’m sorry to hear of your paresthetica meralgia. I can’t say that I have met anyone with lipedema affecting the legs who also had paresthetica meralgia, nor am I aware of any particular association of the conditions per se. I hope you can find a therapist experienced in lipedema to speak with in person, so that they can evaluate the extent of the condition and offer some suggestions that might provide some symptomatic relief, possibly even for the nerve compression issue you’re having simultaneously. Wishing you all the best,
Oh My Goodness…I am SO RELIEVED to hear that others experience pain. My heart goes out to you all. I am almost 62 and experience more pain by the day, I live in South Africa and in desperation found a physio who diagnosed me as having lipedema and lymphodema: first solution to swim but with arthritic legs I can barely get into or out of a pool. I have always been active but now mobility is both painful and irregular. “They say” I am arthritic- perhaps it’s just the lipedema?
My doctor’s are dismissive and try another diet type of physicians and my large family think I eat too much-they are all slender.
If anyone has contacts or knows of someone in South Africa please let me know. Blessings.
My Lipedema has recently become very painful and I am getting very little sleep.
Is anti inflammatory drugs the best thing to take or would you recommend anything else. Paracetamol and sleep remedies no longer are strong enough.
As well as the pain I am also getting a tingling sensation.
Hi all nice to find a site about lymphodema and how many people suffered for years by doctors with not enough knowledge about the condition.I was diagnosed 18 years after living with pain in my legs and ankles and wondering why a size 12 pair of Jean’s couldn’t get over my calves and why my doctor Martin boots would no longer lace up and doctors telling me it’s just fat and to diet which I did many many times and countless years of suffering with cellulitus also hasn’t helped the condition.
Most days I cry as I cant do the things I used to and rely on my husband and daughter who I feel I am a burden on
Since the day I was diagnosed I am a quarter of the person I used to be and do not wish this on anybody it drains you physically and mentally.
I have a heavier lower body, similar shape but I do not have cuffs. I don’t have any fat pain and can’t feel any nodular fat. I share my life on social media and honestly getting tired of people diagnosing me with it. Can someone just be pear shaped and thick-legged without lipedema?? I lost over 100 lbs and my legs are definitely not as big as they used to be. I’m just a smaller pear than before. At 260 I wore XL or 1X tops, 22 pants. I 160 I wear Sm tops and 12 pants.
Thank you for your question and for describing the particulars of your body shape and size. Indeed, lipedema is only an appropriate diagnosis for those with a specific suite of signs and symptoms, and by the sounds of it, I agree – it may very well be that you simply have a pear-shaped body type. Congratulations on your weight loss! I hope you continue to have continued health, Lindsay Davey
I am wondering if this may not be a condition I have. Has anyone found out who the doctor in Naperville, IL was that Jill spoke of? I am right next door in Bolingbrook and don’t have the ability to travel much so a possible doctor that might be able to help me figure out if this condition is an issue for me would be great! If someone knows please feel free to email me at firstname.lastname@example.org
Lindsay please help me.
I promise you have never seen anyone who looks like me.
I wear a size 5 ring
My wrist 5.5 inches
My head and face are small
My neck is 12 inches
I wear a 34 DD bra
My waist is 33 inches
My left thighs is 37 inches. My right thigh is 36.5 inches
My knees are 15 inches
My ankles are 8.5 inches
I wear a size 7 shoe.
Please email a doctor’s name anywhere.. I will travel if they can help me. If you know of a place that sales compression garments for my legs size please share.
Thank you for providing your measurements and I do hope that you can find the expertise you’re seeking. The best option to start in terms of seeking a physician or expert/CDT therapist in your area, would be to connect with the lymphedema association in your region, as a starting point – many of which have ‘find a therapist’ type search engines on their websites (or you could call them for a list). These therapists may very well have a contact physician or other resource in terms of lipedema/lipo-lymphedema expertise in your area. They are also sure to have specific compression recommendations for you, and could connect you with a certified fitter to meet with, for accurate measurement, etc (should they feel that a swelling component exists, or that any other pain symptoms could be helped by some compression). There are several different compression garment manufacturers, and a compression garment fitter or vendor would be your best point of contact to connect with on that front. Again, a certified lymphedema specialist in your area would likely be a great resource to chat with and who could evaluate you in person to provide their recommendations as to what might be the best path forward. I wish you all the best Sheena,
Thank you for your article. I have struggled with my weight all my life and have never been able to get to a place where I feel stable or see that much changed, no matter what I do. I even had a lap band for 5 years and did not lose a pound, and my shape did not change. I was looking for something else when the people’s photos with this condition struck me as familiar. They look exactly like me, a reasonably small upper body and hips and thighs and below very large. I’ve tried every diet and failed. I eat healthily, and I do not have a sense of taste. Craving anything is useless for me. I am not obsessed with any particular food because I cannot smell anything. Tasting is limited to the basics, sweet, sour, salty, and bitter, although I can only tell what I am eating by sight and texture. I can stick to a diet but do not get anything but disappointment after disappointment. People think I chronically overeat, which is not true. My pants size is 24-26, and my blouse size is 14-18. My legs are a dimpled and rumpled mess, which is why I cover them with a long dress. My waist is over 15 inches smaller than my hips, and I have never worn a suit or straight skirt. Doctors dismiss me as a closet eater who refuses to take charge of my eating and exercise. Over the years, I quit sodas, decreased bread to Eziekieal bread twice a week, gave up wine, ice cream, bananas, limited cheese, increased salads, and raw vegetables, beans, water, all to no avail. I added exercise, and after spending 6 months walking 3.5 miles, 3 times a week, I did not lose a pound or look any better. I reduced this because I ended up destroying my knee and spraining my lower back. I tried working out and tore my rotator cuffs. I had given up ever being able to solve this problem for and my daughters. I will research this and see if there are any doctors in my area to help me. I must admit I am skeptical because, if they knew about this, I think some of the 20 doctors I have seen would have mentioned or referred me for treatment.
Thank you for your candid account of your battle with your weight Regina. With all your best and impressive efforts, it certainly sounds as though something of a genetic/congenital nature is contributing, that would cause your body fat to remain unchanged as it has, and its disproportionate distribution in your body, as you have described. I do wish that more physicians would be educated and speak about conditions such as lipedema with their patients, particularly those who have tried to decrease their body weight in healthy ways, to no avail. Wishing you all the best and the same for your daughters. I hope that the article helped provide you with some additional information about the condition, and at the very least, leaves you with the knowledge that you are certainly not alone.
Warmest regards, Lindsay Davey
I am a 41 year old female living in Vancouver BC and in November 2017 I was diagnosed with having both lymphedema and lipedema by a vascular surgeon and I thought it would be the beginning of the end of the swelling and extreme weight gain I had started noticing in late 2013. To give you some history I had struggled a bit with being overweight from about 13 – 16 years old. I was probably around170lbs however when I turned 16 I was walking everywhere and noticed that I was losing weight but only from the scale. My lower body was always bigger than the upper half and my waist was just under 30 inches so I would buy small or Medium shirts and size 34-36 jeans as those would be the only size to accomodate my hips and legs. I managed to get down to 145/150 and remained there until about the age of 20 when I was working alot and still walking everywhere and at my lowest point I was 119lbs. Everyone would make comments about how skinny I looked but all i saw were my big legs and still felt fat. From 21-23 when I got pregnant my weight had stayed around 125lbs. Right before I gave birth I weighed 169lbs which was my highest weight in addition to my early teens when I weighed the same. After losing a bit of the baby weight I stayed around 150lbs for years until 2013 when it all started to change. I noticed that my legs were starting to swell and feel heavy and painful. I also noticed that I started rapidly putting on weight that couldn’t be explained by diet so I went to the doctor and it hadn’t occured to me that he just thought I was overweight due to overeating. It wasn’t until late in 2015 when i showed him pictures of me to prove that i am not nor was i ever this size in my life. Finally he took me serious and started sending me to specialists and for tests. The vascular surgeon was the last one I was going to see and luckily he knew what it was. I immediately felt relief as I assumed that now we knew what it was we could treat it but unfortunately this is not the case. I had my doctor write a prescription for a lymphedema pump which i thought would be the next best thing to the MLD which wasn’t covered by Canada’s healthcare system but was denied for this. I appealed it and my doctor wrote something stating if I don’t get the pump or mld eventually the swelling will cause the skin to open and the wound will likely not heal leading to repeated cellutis. That happened in 2018 when I was 250lbs and my left leg in particular had gotten so heavy I could barely walk. My right leg is starting to swell as well but my left leg right above my lower leg wound now measures 70. I had to stop working after the summer of 2019 as I was in constant pain and waking up multiple times a night crying due to the pain. My family blames me for “letting it get this bad” when its the healthcare system that has failed me. I still have the wound and am in so much pain all the time that every night i go to bed hoping I don’t wake up. I will never have the money to treat this as on disability i have only $175 left for the month after paying rent. I have always worked to support myself since moving out at 17 years old with the exception of 3 years when I had my daughter who wont live with me because i am constantly screaming “ow” during the night and my wound smells at times. I have literally lost everything due to lipolymphedema and am currently waiting for them to change the law around medical assisted death which happens later this month so I can sign up. I didn’t qualify due to the law previously stating death has to be forseeable. It’s crazy to me that MAID is covered by Canada’s healthcare system and treatment for a condition I did not cause is not. I don’t want to die I just want my life back. If you know of anyone in Canada that does MSP covered treatments please let me know. Thanks for your time.
I’m so very sorry to hear of your long struggle with your weight, and your lipolymphedema which has so dramatically and significantly affected your quality of life. As a rare condition it is so frustrating to have doctors and loved ones uncertain how to diagnose or unable to empathize, but I am happy to hear you finally found a vascular surgeon who lead to you a diagnosis, though I know this does not mean that treatment is readily available. I can’t speak to MSP covered programs in your area, but in Ontario we do have compression garments, pumps, and even to some extent bandages/wrapping and wound care that is covered under our provincial system for those in need. I hope your family doctor could at least connect you with a home care or wound care service that could help treat the wound, and that a lymphedema therapist in your area could be consulted with to address the swelling and pain. CDT therapists are searchable on the provincial lymphedema association website, and with any luck you could find someone who could offer more specific suggestions, massage techniques, bandaging support, and possibly velcro-style compression wraps to help prevent any worsening of the leg swelling. I am so sorry that MLD treatments are not covered under provincial healthcare systems, but I would suggest reaching out to the B.C. Lymphedema Association which may be able to direct you to compassionate funding streams that may be available. I wish you such luck in your search for supportive therapists in your area, so that you can feel some level of control of your legs and quality of life again Lisa. Best, Lindsay Davey
I believe that I do have almost all the symptoms of Lipedema down both my legs. However, I need to find a Doctor here in New York City that is educated in this condition. I don’t even know what kind of specialist to go to who handles this.
Can you help me out with getting a listing for Doctors here in New York City? I would so appreciate any help and direction you could offer me.
Thank you for your comment. I am hopeful someone in our readership could help direct you. Perhaps searching out a reputable lymphatic therapist in NYC as a starting point might lead to a referral to a lipedema specialist in the area. Wishing you much luck! Lindsay Davey
Hi, my names is Clara and I live in London, UK. I have been diagnosed with lipoedema and durcums disease four years ago and in the last 3 months months it has got unbearable. I cant believe there is no one in the UK that can help me and I am at a loss as of what to do.I noticed it got worse after my hysterectomy then going thhrough menopause. I am actually really depressed and would like some help of some sort. Any pointers please?
I am so very hopeful that someone in our readership may be able to suggest a resource for you in London, UK. I hope you can find the support you need to feel you are able to tackle your current condition, both physical and emotional. Sending you all our best wishes from Toronto Clara. Lindsay Davey
Hello. I don’t know if I have lipedema. My massage therapist suggested it to me. Before that I had no idea such a thing ever existed. I have been overweight since the birth of my first child. Weight problems run in my family with my 3 sisters being overweight but my brother, a type 1 diabetic, is skinny. Since my legs have started to get bigger the pain in them has increased as well. If my husband puts his hand on my knee and gives a gentle squeeze, I’m in pain. My cats love to walk on my legs, when I’m sitting and the pain is becomming unbearable. They cause bruising. I have large deposits at the top of my inner thighs that make it painful to walk and on the insides of my knees and upper calves. Since I am obese on the top half of my body, my doctor says it’s all just overweight. I don’t know where to go. I live in Ontario, Canada and we can’t change our doctors on a whim. It’s impossible to get a new one.
can anyone suggest where I could go?
Thank you for your comment Helen, I am so sorry to hear that you’re experiencing the leg sensitivity that is one of the possible symptoms of lipedema. Seeking a second opinion is indeed challenging in our current health care structure, and particularly difficult finding someone with experience in lipedema. If a light compression stocking could help with the discomfort that might be worth considering, so if you can’t find a physician specialist to discuss it with, you may wish to find a compression garment fitter in your area, or, we have links to a few compression garments options that can be purchased on-line in our lipedema blogpost, that may help. Wishing you all the best, Lindsay Davey
After finding this page, I’m sure now this is what I have. I’m only 33 and I’ve had signs of this in my arms for over 10 years. I have one in my hips as well as behind both thighs. I’ve never been obese. I’ve gone to many doctors even muscle specialist and they tell me I’m a medical mystery bc everything looks fine. I’ve even had ultrasound and they see nothing. Last I was told was to get plastic surgery of fat transfer to cover the indentation in my arm. But I know it’s has to be more to this. My has spread in my left arm where it’s down to the muscle, the fat is completely gone. My right arm is beginning to mimic the other. It’s really odd and embarrassing to have. Is there a cure? How do you treat this? There has to be a way. Btw I have no children either, I see it says forms after pregnancy.
I’m very sorry that this has been a long road for you, without much support, or even acknowledgement of the possibility of lipedema being a differential diagnosis to rule in/out by your medical team members. Unfortunately, as with so many conditions, it is one of genetics by and large, and there isn’t in our experience so much as a ‘cure’ as strategies to manage it, so to speak. If you have tenderness in your limbs, light compression might feel supportive and decrease this feature. Maintaining as healthy a body weight as much as possible can help in some individuals with lipedema, at least in terms losing excess body weight (if this is a feature in your case), though the distribution of where the adipose tissue is held in someone with lipedema, is what is likely unchangeable, unfortunately. Hormone changes (puberty, pregnancy) can sometimes elicit the start of the condition’s presentation, although not in all cases. I do hope you find some supportive health care practitioners that can help you with management strategies Dee, and rest assured, as you can tell from reading the other comments on this blogpost, you are most certainly not alone. Wishing you much luck and health, Lindsay Davey
I have always (from age 5 or 6) had pockets of fat on the inside of my knees, in addition to being overweight. I went from being a chubby child to an overweight adolescent to an obese adult. I am now almost 64. I underwent gastric bypass 12 years ago and lost 120 pounds, putting me at a healthy weight for the first time in my life. Even so, my fat knees continued to be a problem. I have kept most of the weight off and my doctor has been pleased. I have quite a bit of flabby skin on my upper arms and my abdomen since I lost all the weight, but my fat knees and thighs have remained. About 7 years ago I noticed nodules in the fat–making it hard to identify the knee caps and other structures of what “normal” knees should look like. I asked my family doctor if liposuction would help the deformed look of my knees, but she indicated that any benefit would probably be temporary. She might have called my problem lipedema, but I confess that I didn’t give it much thought when it seemed my problem is something I should just learn to accept. (However, I doubt I shall EVER learn to accept my fat knees, given the fact I have experienced over 50 years of shame–avoiding wearing shorts and bathing suits, even after my successful weight loss.) The only part of the self diagnosis guidelines in your article that does NOT describe me is the presence of pain/tenderness when my knees are touched. In fact, I HAVE NO PAIN IN MY KNEES, other than osteoarthritis which is kept in check by turmeric supplements. SO…My questions are as follows. Can one suffer from lipedema without experiencing pain? Since my surgery, I have bruised easily, but I chalked it up to vitamin deficiencies due to my inability to absorb nutrients as easily as I did before my bypass. I intend to bring up lipedema to my family doctor when I see her next month, but given that I have no pain in these fat nodules, maybe my problem is something other than lipedema. What do you think?
Thank you for sharing your story. I’m happy that your surgery was so successful but sorry to hear that some persistent fat has remained at the knee areas. Lipedema is not always painful to touch, so it’s possible that you have a degree of lipedema, yes. I would definitely suggest asking your physician about it again when you see her next month, as perhaps she will comment along the same lines regarding a possible lipedema condition at play. All this to say, I have certainly seen lipedema cases that do not experience particularly sensitivity to touch, so the full suite of signs and symptoms of lipedema are not always present in each case. Wishing you all the best of luck Lynn!
This site has proved to be very enlightening. I believe I have lipedema, but it is not manifesting in my legs or thighs or bottom. Instead it is appearing on my arms and my upper back. Is this possible? I am a relatively small woman, am overweight by no more than 15-20 lbs, but my upper arms are really large and my upper back looks like it almost has sacks of weight. My arms and upper back feel tender and it is hard to get my arms into some shirts. My grandmother most definitely had lipedema, but it was in the legs, not in the upper body. I am dieting and exercising strenuously to lose that small amount of weight and I am having almost no luck, with my arms and back remaining disproportionately large and very achey. There are many times when I also find these areas are cold.
Wow. First thank you for your article. I am amazed you are able to take the time to answer so many of us! I have been reading and learning about lipedema for years as I am about 99% I have it, my adult daughter has it, and my paternal grandmother died of it – albeit diagnosed as congestive heart failure and kidney failure, she had lymphedema and her legs were massive with a tiny upper body. She died in 1978 when the condition was not on the radar.
For me it began with puberty but I am life long athlete and have stayed in incredible shape my entire adult life, which perhaps has stemmed the progression, and at age 60, and still weight training, running, skiing, and biking, and hiking, I am still level 1, and just living with it. I am also not overweight and with my activity level I have never been so, but every bit of fat in my body is in my legs, which are shapeless due to fat padding obscuring very strong muscle development, and it is only through weight training that I have any shape in my upper body, where I also have zero fat. It is frustrating. There is no one in Alaska that treats this condition at all and every practitioner I have mentioned it to has no clue what it is and tells me I’m in great shape. Because it has not gotten worse until recently (increased bruising, pain, increased swelling, spider vein issues), I had just kept plugging along, reading what I could in hope more light shed on condition might being some awareness to my state, and treatment. My husband & I own a very demanding business hence travel for lengthy treatment, such as water assisted liposuction, won’t be easy.
Now that I am seeing the progression in our dear daughter I am alarmed. She was a standout athlete growing up, continuing through college on full athletic scholarship, training 3-4 hours a day on top of studies, is now working on her masters, retaining the same habit of fitness as I, and in great shape, but her legs are getting huge, while her upper body remains thin. She is still in her 20’s. She has not brought it up, and I do not want to say anything as it seems body image issues are so prevalent today and I don’t want to add that into the mix! Hence I am revisiting my own issues and if she asks me about it I will share.
I guess I’m posting just to add another background into the mix as I already know there is nothing for lipedema treatment where I live and I have already explored all possibilities of seeking and obtaining treatment. I am curious about lymphatic massage and am going to explore that as massage therapy is very prevalent here.
Thank you so much for your contribution here Elizabeth, I have no doubt other readers will really benefit from hearing your story, and that of your daughters. Indeed, the liposuction procedure is still a relatively new/rare offering, and from Alaska I can only imagine the challenge in accessing a physician experienced in this type of procedure. I wish you the best of luck with the lymphatic massage and want to thank you again for describing your story for our readers. It is so appreciated to let others know they are not alone. All the best Elizabeth, to you and your daughter both. Best, Lindsay Davey
I have always had a lot more weight around the midsection and legs. I have had 7 children, after the last two it seems almost impossible to lose weight. I have not lost any weight since the end of my pregnancy. Not even the weight of my baby. Also the fat on my lower back has begun to hurt, like stabbing shooting pain if anyone touches it. It doesn’t even have to be hard. My feet don’t swell up, even in pregnancy, but I don’t have the signature ankles, mostly fatter thighs and hips and butt, lower back and belly. The lower back fat really hurting led me to this page. Does it sound possible that it could be that?
I’m grateful for your comment as it is always helpful to others when we hear stories of our readers about their own experiences. It’s entirely possible that there is a lipedema component, but so difficult to say without seeing you in person. Typically the pattern of fat distribution in a classic lipedema case occurs at the time of puberty or in the years thereafter, rather than brought about after successive pregnancies, and does have the classic ankle presentation, but again, there is always a chance there is a component here that is lipedema in nature. Are your legs also very sensitive to touch/painful with pressure, as your low back is? I wish I could help more without seeing you in person, but you could always try a light compression garment to see if that helped with your symptoms, provided you have been cleared for other orthopaedic reasons for low back pain, etc.
Wishing you well Sarah, Lindsay Davey
Hello! I’ve not yet been diagnosed with lipedema but I’m 100% sure I have it, my legs are bigger than they should be and this all started after I gave birth to my son 4 years ago, I’ve asked about liposuction but they won’t get back to me about it and sadly working out don’t work, I was wondering what you think I should do, I have horrible foot aches and sometimes I can barley get out of bed and stand up without almost falling in pain…please help.
I hope you might consider light compression stockings like the one we link to in our article, or there are many options out there that might help with the pain aspect. If there is a foot aching issue, you may wish to be assessed by a physiotherapist or mention this to your physician, in case fallen arches or plantar fasciitis could additionally be a factor (and which could be helped by other means). I hope you find a compression garment fitter and/or a lymphedema therapist who might be able to help you with compression options if you have not tried this already. Liposuction via a trained plastic surgeon is certainly an option you could pursue, and I hope there might be someone in your area that you could at least meet with to discuss whether this could be an option for you or not.
Best wishes Ashley,
Hi,when I read your letters think hit home. My intiered life since about 12 I always claimed I. Was put together wrong. I have small upper body and large lower body. I always say I have uglyest legs there was ever put on a human. No knees no shape. Just above knees there is massive fat they are just as large is the very top of my thighs calves are no better I have never wore shorts or dresses since I was a young teen I’ve had six children and have lost several pounds from 200 down to 100 pounds but my legs are always bigger and on shaped as ever. I have always said I was put together wrong and that there was something wrong with me when I would asked the doctor about it they would you say that’s just your shape but I never believe them I live in Ann Arbor Michigan and would love to find a doctor that could help me with this it’s always been a real problem for me in lifePlease help
Your own story will hit home with others I’m sure. I hope that another physician could provide consultation for you so that you could understand your options better. I hope that your legs do not cause you pain. You are certainly not alone, and I wish you well Sharon. We all come in different shapes and sizes and I hope you find the practitioners in Ann Arbor that can help support you best. Best wishes,
Are there any doctors who can diagnose Lipedema in the Newmarket/York Region area?
I am 74 and was diagnosed with lipedema one month ago. I live on the Isle of Man, a small island, just off the coast of the UK. I had known for years that my legs were too heavy and were increasing in size and suspected that fluid accumulation had something to do with it. In September I decided to get a massage as a treat to myself. A new masseuse as, I had moved to a new address last year. When she came to massage my legs, I mentioned that the flesh felt sore and she remarked that maybe I should get the edema in my legs checked out by a physician.
My GP saw me and admitted that she had insufficient knowledge to make a diagnosis and referred me to a Lipedema/Lymphedema nurse specialist on the island. Two weeks later I saw Elaine, who ran through a series of questions with me before a physical examination and diagnosis of lipedema. Since then I have had weekly appointments where Elaine has performed MLD and shown me how to do it myself. She has encouraged me to buy and wear compression garments and shown me exercises to do at home. Our discussions showed how I started to develop lipedema in my mid 50s when I finally stopped taking hormone supplements – 23 years of the contraceptive pill, followed by 9 years of HRT. When I read the stories of other ladies, I realize how lucky I am to only have started my suffering only so recently. It must be so hard when lipedema starts in teenage or young women.
Already I feel more confident about taking charge of my situation and in my ability to slow the progress of the lipedema. Next step is to firm up on improving my diet!
Thank you for sharing your story Valerie! Very uplifting indeed, and I’m sure others will appreciate hearing the strategies you’ve taken in the management of your edema. I wish you all the best!
As everyone here has already mentioned, thank you for the great article and for your continued and informative responses. I would also like to thank everyone here for their input. It really does help everyone. My only question is this: Can lipedema or lymphedema become life a life-threatening condition if left untreated??
Thank you for your kind comments, and I’m glad that our article has been helpful. I am actually currently in the process of updating it as there has been a large consensus document recently published on the topic of lipoedema and it has further insights into this condition and its relationship to lymphedema. Stay tuned for that blog post! In answer to your question, no, there is no higher risk of mortality in patients with lipoedema or lymphedema directly. If obesity is a factor in a patient’s case, this of course has significant implications on longevity due to its widesweeping effects on health, but if left untreated, the other conditions would not be considered life-threatening on their own. Best wishes Shane!
My daughter was diagnosed with Lipodema and has the fitted compression hose to wear under her clothes but those are difficult to adjust to. She comes home from work and her legs hurt sometimes so I purchased a leg massager that didn’t do much so we sent that back. I’m looking at the full body chair massagers and I wonder if anyone has had luck with those products?
Side note: I read through these comments and I’m sad for so many people who have struggled with this condition. I noticed she had thicker legs when she was a child but the doctor smiled and said that’s her body type. She was on the high end of the growth charts, but more importantly, she was an excellent student and a kind person. I hope those of you who have been treated poorly for a medical condition can find someone who will support you.
I’ve been starving myself for about fifty years to try to keep my legs from getting fatter and all it’s done is keep my upper body small and my lower body kept getting bigger. I am in my 70s and am probably stage 2. (Self diagnosed). I will be moving to So Cal soon and hoping someone could recommend a Dr to diagnose and treat this hideous disease.
Hi , I’m wondering of any of you have pain if pressure is applied to legs? If so, what does it feel like? I’m trying to work out what my pain sensitivity is caused by. Thanks
Hi! I am 24 years old and I believe I have this condition. However, I’m not certain enough to go to a doctor about it. My upper body typically fits into a small/medium and my lower body is typically a 10-12 (L-XL). I have more cellulite than my 66 year old mother. I have always been an active person (3 sport athlete in HS, lifting, running, biking, etc.) so I do have some muscle left but I started lifting regularly about a year ago and I have seen more development in my arms and very little development in legs (even though I never skipped leg day and would train very hard on those days). I have so much cellulite on the back of my upper legs and within the last few months I have started to notice the cellulite in different places on my legs. I noticed these changes even though I have not changed my diet, workout routine, or my weight. If you could you please respond to this message, I would be so greatful. I just want to look like a normal 24 year old and not be constantly covering up my legs
I’m very sorry that you’re feeling so frustrated by your legs, and am glad that you’ve found your way to this blog post/community. Naturally, we always recommend patients seek out the expertise of their physician or someone who can evaluate the individual in person. I’m very happy to hear that you’ve been lifting weights and seeing progress in your arms, and rest assured, there are still so many meaningful benefits to the lower body exercises you’ve been doing as well, even if the same definition and tone isn’t evident in the lower extremities. I understand the frustration given you haven’t seen positive changes in your legs, and in fact, have seen the accumulation of fatty deposits instead. Are your legs painful to the touch or with pressure applied to them? I would suggest you may find wearing light compression helpful, but again, this would mainly be for any pain symptoms you have. I assure you, you are not alone Maddie and there are certainly many young women your age experiencing the same condition. If your legs do not limit your sports, running, biking, or working out routine, I think that’s really a positive thing. Having lipedema isn’t easy, but you sound like you are doing all the right things and you will no doubt keep things in as best shape as possible, and prevent any pain symptoms from onsetting. I wish you much luck in your continued education on this condition and finding ways to accept and manage it if you do indeed have lipedema. Most sincerely, Lindsay Davey
Thanks for this very informative article.
And lots of hugs and solidarity to everyone on here and out there who has always felt like they are wearing someone else’s body from the waist down!
In particular your section about the so-called progressive aspect has made me wonder if I have lipedema. Fat-wise, my legs don’t hurt (although they do bruise very easily, and I feel like i have distant memories of them being more sensitive than they are now…).
Also, although they don’t really look much better despite plenty of regular exercise, they don’t seem to have worsened over time either – they still look like a lot of ‘stage 1’ photos I have seen. Due to a long-standing jogging habit I am fitter now than I was at 20 and, reading your article, I wonder if this is why things have not progressed.
It’s still perfectly possible I just have big legs/bum and cellulite I suppose, but lipedema would make sense of a lot of things (I regularly land on the upper side of ‘acceptable’ BPMs as well, despite being small/medium on my top half, with quite a small bust).
Anyway, while my legs are never going to be ‘lookers’ they have never let me down during my years of running, so i am now appreciating them for other reasons.
So I guess you could say I am at peace with my legs, and ‘managing’ them, which is good news!
However, I am wondering whether it is worth actually formally seeking a diagnosis, just so we know what we are dealing with if my daughter’s legs also go loco when she hits puberty!
If it’s not lipedema, then all good! But if it is, maybe it is worth me knowing for her sake, even though it has caused me minimal problems so far. On the other hand, i dont want to be making a big deal out of something and making her paranoid. Hard to know the what to do for the best, really…
Hello JoggerT! This is such an uplifting comment, I thank you so much for sharing your story and your experience of keeping active, querying whether you have lipedema or not, and being at peace with your legs, either way. Indeed, you may be someone who, without all the ‘classic’ symptoms, may be difficult to necessarily get a definitive diagnosis one way or the other. I would suggest you wait and see as to how your daughter’s legs present as she progresses through puberty, and encourage the activity aspect as you are already modeling, as a great way to manage symptoms, in the event that she does show a distribution feature such as yours in terms of her fatty tissue in the legs.
All the best JoggerT! Your positive attitude and experience will be a big help to others reading this stream, I am sure.
I live walking distance from your clinic. I’d love to come in for a consultation with you. I haven’t receive a diagnosis, but have suspected for years this was my issue. Do I need a diagnosis or a referral to your clinic?
Thank you for reaching out. We would be happy to see you for a consultation, and have particular therapists who are best suited to providing their clinical impression in terms of lipedema. No, you do not need a referral in order to be seen by one of our qualified physiotherapists or massage therapists. You are welcome to email us or call with your preferred clinic location, and we will be happy to offer you booking options with one of those therapists, at whichever location you live nearby to.
Thank you for reaching out, and my sincere apologies for the delay in my reply! We will be very happy to see you and can give you our best clinical impression of what is going on in your case. No, you do not need a referral in order to attend our clinic, and it would only be if you have insurance coverage for physiotherapy or massage therapy, and intend to submit your receipt for reimbursement, that your company may require one (though this is more and more rare these days, we find). We look forward to meeting you Mandy! Lindsay Davey
I had never heard of Lipedema, either, until trying to find information about Elephantiasis. I THOUGHT that’s what my 6th teacher had. She had the typical normal sized upper body and enormous legs. They obviously caused her discomfort. But she was a very good teacher who tried to hang in there with us. And then one day halfway through the school year, she was just gone. We were 12 year olds but weren’t told anything about what happened to her. We spent the next 6 months behaving badly under the care of substitute teachers. Anyway, I can only imagine how much confusion her disproportionate legs caused back then. So many conditions with the root words of “lymph” or “lipid” cause lower body fat accumulation. Even today, it’s hard to discern whether someone has Lipedema as opposed to just having “fat hips” or “big thighs.” In any event, it sounds like the remedy for Lipedema and “regular” unwanted fat is the same…liposuction. I also understand from what you and others are writing that the major difference is pain.
Hello. I live in Toronto and can’t find any doctor who knows about lipodema. I am in pain 7 years (((
There are not many physicians who specialize in this area, indeed. I wish you luck in your search,
I have a large I’m assuming cyst behind my knee last year and then this year I got two more that came up by it and my upper arm has a little knot in it my legs feel painful and heavy and recently I’m having a hard time swallowing do you think this is what I have
Thank you for your comment/question. It’s difficult to say, without seeing you in person, to evaluate the feeling of these cysts, or possibly lipomas (fat deposition), or otherwise. If the legs are feeling heavy/painful that may be a sign of swelling, and/or lipedema, but could also be a number of different conditions, so it is always advised to speak to your doctor about new issues such as this. The difficulty swallowing should be investigated as well, to rule-out a thyroid issue, or other pathology. I’m sorry that I can’t be more specific for you Jade, but I hope you follow-up with your physician to get some answers to these various symptoms you’re experiencing. Best wishes to you Jade,