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| You can read the story of this mother and daughter with lipedema here. |
In this condition, an abnormal overgrowth of fat cells occurs in the legs and lower trunk, sometimes also including the arms or upper body as well.
Lipedema is rarely recognized by doctors. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.
In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.
In Part Two of the series, we discussed how it progresses, the different Stages of progression, and why it's so important to be aware of lipedema
In Part Three of the series, we discussed the different Types of fat distribution patterns, looked at some pictures to illustrate Type and Stage of lipedema, and detailed how lipedema is diagnosed.
Today we discuss the various theories of what might cause lipedema, as well as conditions that are often associated with it.
In later installments, we will discuss treatment options, as well as practical suggestions on how to deal with lipedema.
No one knows what causes lipedema, but there are several theories floating around. More than one of these theories is probably involved.
Hormonal
Since lipedema is diagnosed almost exclusively in women and usually gets worse starting around puberty, most researchers assume it is hormonal:
Hormonal
Since lipedema is diagnosed almost exclusively in women and usually gets worse starting around puberty, most researchers assume it is hormonal:
As lipedema appears to be expressed most commonly at puberty, it is reasonable to assume that hormonal influence underlies the marked female limitation shown in our studies to date
Since lipedema often gets worse during times of major hormonal shifts, like puberty, pregnancy, and perimenopause, many researchers suspect that estrogen somehow plays a role in its development.
The estrogen connection is logical because usually only women are affected. However, occasional case reports of males can be found in the medical literature, usually secondary to other causes like liver issues.
On the other hand, some people with lipedema believe that males are also affected by lipedema but its presentation in males simply goes under-recognized because it does not have the classic pear shape that women get. It might be that male sufferers instead have an increased tendency towards weight gain or lymphedema but avoid the pear shape or extreme leg size that women tend to get.
It is also conceivable that males might merely be carriers of the traits, even if they don't present with symptoms themselves. Either way, it would be revealing to look in more detail at the close male relatives of women with lipedema.
However, estrogen can't be the only answer to lipedema because all women go through puberty, most go through pregnancy and menopause, yet only some develop lipedema. And there are lots of women who develop pretty severe lipedema even when they are childless or have not been through menopause yet. There has to be more to the story.
Estrogen-related events may trigger a cascade of reaction that makes lipedema worse, but it seems obvious that there has to be some other underlying issue to be triggered.
The estrogen connection is logical because usually only women are affected. However, occasional case reports of males can be found in the medical literature, usually secondary to other causes like liver issues.
On the other hand, some people with lipedema believe that males are also affected by lipedema but its presentation in males simply goes under-recognized because it does not have the classic pear shape that women get. It might be that male sufferers instead have an increased tendency towards weight gain or lymphedema but avoid the pear shape or extreme leg size that women tend to get.
It is also conceivable that males might merely be carriers of the traits, even if they don't present with symptoms themselves. Either way, it would be revealing to look in more detail at the close male relatives of women with lipedema.
However, estrogen can't be the only answer to lipedema because all women go through puberty, most go through pregnancy and menopause, yet only some develop lipedema. And there are lots of women who develop pretty severe lipedema even when they are childless or have not been through menopause yet. There has to be more to the story.
Estrogen-related events may trigger a cascade of reaction that makes lipedema worse, but it seems obvious that there has to be some other underlying issue to be triggered.
Genetics
It seems clear there is a strong hereditary component to lipedema. Anecdotally, it often seems to be handed down from generation to generation. In the research, reports of family history of lipedema ranges from 16% to 45%.
The hereditary link is not 100%, of course. Few things are. Lipedema can occur without a family history of it. But just as a tendency towards certain heights tends to run strongly in families, so does lipedema.
The picture below shows a mother and a daughter with Type III (full leg) lipedema.
The daughter looks like she is transitioning into Stage 2. Her skin is mostly still smooth but starting to change, she has overgrowth at the hips, and fat pads are just starting at her knees. The beginnings of a bump at the ankle can be seen if you look closely.
Attempts have been made to document the family trees of people affected by lipedema. Although not every woman in family histories is affected by lipedema, there often does seem to be a history of at least a few women with notably big legs, hips, or arms.
This led some researchers to propose that lipedema is "a genetic condition with either X-linked dominant inheritance or more likely, autosomal dominant inheritance with sex limitation."
However, this has not yet been conclusively proven. At this time, no specific genes responsible for developing lipedema have been identified.
Inflammation
Some researchers now believe that inflammation plays a key role in lipedema. This is the trendy theory on many lipedema websites now, with many women promoting "RAD" (Rare Adipose Disorder) anti-inflammatory diets in hopes of halting the progression of lipedema or lessening its symptoms. One lipedema resource states:
Lipedema is...an inflammatory reaction to our environment, processed foods, high carb diets, hormonal events such as pregnancy and menopause and chronic, everyday, or event related stress.That seems an overstatement of the evidence to me; we do not really know yet if lipedema is caused by an inflammatory reaction. And lots of other people are also exposed to processed foods, a toxic environment, and extreme stress, yet never develop lipedema. So again, there has to be more to the picture.
However, that's not to say that an inflammatory reaction could not be part of the picture. But is it really the main source of lipedema-related issues?
Many women with lipedema report that at times they have experienced a flare, a sudden MAJOR worsening of their lipedema despite no changes in diet or exercise, sometimes also with lymphedema, infection, or a change in skin texture. Some have come to call this an "inflammatory cascade."
If the inflammation theory is true, then people with lipedema may be able to minimize their condition by avoiding foods that tend to be inflammatory (dairy, sugar, and gluten are the usual culprits named), avoiding stress, and avoiding possible environmental triggers like the chemicals in plastics.
On the other hand, the field of nutrition, weight management, and alternative medicine is filled with fad diets and nutritional trends. The anti-inflammatory diet is extremely trendy these days, so it's not surprising to see inflammation proposed as the cause du jour in various diseases. It's far from proven that inflammation is the main culprit behind lipedema flares, though it could be one piece of the puzzle.
Bottom line, we should not jump to too-broad conclusions about inflammation's role without good supporting evidence. Women with lipedema may have prematurely latched on to an anti-inflammatory diet as a "cure" because it gives them a sense of control and a magical totem against the possibility of developing severe disabling complications.
Lipedema experts these days recommend many different diets, not just anti-inflammatory ones. Take the anti-inflammatory buzz with a big grain of salt, but don't dismiss it either. An anti-inflammatory diet is mostly just common sense, and it's probably good for everyone to avoid plastics and highly processed food anyhow. It's unlikely to harm anyone if it is reasonable and moderate. Women with lipedema may want to try a RAD diet ─ not for weight loss, but to see if it helps their symptoms. But don't take it as a guarantee that it will help.
On the other hand, no one is obligated to follow an anti-inflammatory diet just because they have lipedema. Some lipedema groups lay a pretty heavy guilt trip on anyone not following an anti-inflammatory diet, despite the lack of proof of any benefit from it. Remember, at this point, its value is unproven. In the end it may be shown to have some effect, but at this point, it's all conjecture.
Inflammation is an intriguing theory and deserves to be investigated more thoroughly. However, inflammation is an unproven theory, and this must be kept in mind.
Auto-Immune System
Some people also speculate that lipedema may have an auto-immune component. This seems to tie in with the inflammation theory in that the inflammation may be an auto-immune response to insidious environmental cues around us, including food sensitivities, plastics, or estrogen-promoting foods and substances.
Although there is little proof of ANY of these theories at this time, an auto-immune connection is one theory I am inclined to take seriously, since anecdotally, many women with lipedema also report high rates of autoimmune diseases running in their families, such as thyroid issues or lupus.
Of course, the same argument made against the inflammation theory can be made here. Autoimmune is another trendy theory these days, so caution must be applied when considering it too.
Endocrine Issues
Lipedema often seems to be accompanied by endocrine issues, leading some to speculate that this may be the original trigger for the overgrowth of fat cells or inflammation cascades.
One lipedema article states, "90 per cent of...cases have accompanying diagnoses of hormonal disturbance (thyroid, pituitary, or ovarian)." And the new Dutch guidelines on lipedema encourage testing patients for various endocrine issues.
On the other hand, many lipedema resources do not pay much attention to endocrine problems as a possible cause. In my opinion, this is a vastly under-researched aspect of lipedema and I would like to see MUCH more research done on it in the future.
Honestly, lipedema reminds me a bit of acromegaly. It's not the same condition at all, but the process behind it might have some similarities. Acromegaly occurs when a benign pituitary tumor causes too much Growth Hormone to be produced, and as a result the body size increases immensely, though in different ways than lipedema (affecting bones and certain soft tissues rather than fat cells). People with acromegaly grow so much they can end up very tall, with large hands, feet, jaw, prominent forehead bulges, and enlarged organs.
What if there were something similar happening with lipedema? What if the pituitary overproduces (or underproduces!) an important hormone and this causes hypertrophy/hyperplasia of fat cells? Wouldn't that explain why some people have such overgrowth of fat, despite strict diet and exercise? And why so many people with lipedema seem to have other endocrine issues? And why people get lipedema in such differing severities?
It just seems to me that some sort of endocrine issue HAS to be involved somewhere in this condition, and pituitary seems logical since it is the "master gland" controlling the other glands.
However, as with the other theories, there is no proof of any connection between pituitary issues and lipedema, so this idea also has to be taken with a large grain of salt.
Lipedema often seems to be accompanied by endocrine issues, leading some to speculate that this may be the original trigger for the overgrowth of fat cells or inflammation cascades.
One lipedema article states, "90 per cent of...cases have accompanying diagnoses of hormonal disturbance (thyroid, pituitary, or ovarian)." And the new Dutch guidelines on lipedema encourage testing patients for various endocrine issues.
On the other hand, many lipedema resources do not pay much attention to endocrine problems as a possible cause. In my opinion, this is a vastly under-researched aspect of lipedema and I would like to see MUCH more research done on it in the future.
Honestly, lipedema reminds me a bit of acromegaly. It's not the same condition at all, but the process behind it might have some similarities. Acromegaly occurs when a benign pituitary tumor causes too much Growth Hormone to be produced, and as a result the body size increases immensely, though in different ways than lipedema (affecting bones and certain soft tissues rather than fat cells). People with acromegaly grow so much they can end up very tall, with large hands, feet, jaw, prominent forehead bulges, and enlarged organs.
What if there were something similar happening with lipedema? What if the pituitary overproduces (or underproduces!) an important hormone and this causes hypertrophy/hyperplasia of fat cells? Wouldn't that explain why some people have such overgrowth of fat, despite strict diet and exercise? And why so many people with lipedema seem to have other endocrine issues? And why people get lipedema in such differing severities?
It just seems to me that some sort of endocrine issue HAS to be involved somewhere in this condition, and pituitary seems logical since it is the "master gland" controlling the other glands.
However, as with the other theories, there is no proof of any connection between pituitary issues and lipedema, so this idea also has to be taken with a large grain of salt.
Abnormalities of the Lymph and Vascular System
It's possible that lipedema may only develop in people with underlying abnormalities in the vascular or lymph system, as one resource notes:
Foeldi and Foeldi have proposed that microangiopathy in the area of the affected adipose tissue sets off the condition leading to increased permeability to proteins and increased capillary fragility.Dr. Karen Herbst, one of the most pre-eminent specialists in Rare Adipose Disorders, speculates that abnormalities in the way the body transports fluids is at the heart of the problem in lipedema. She notes:
...Fat in lipedema...[shows] copious amounts of watery fluid upon incision of lesions and of ‘free fluid fat’ in biopsy specimens. The increased fluid suggests a basic abnormality in the interstitial transport and exchange of fluid, with resulting disruption of fat and accumulation of fluid due to increased hydrostatic pressure. So this means that fluid is either entering fat at a faster rate or leaving fat at a slower rate. In fact, both are likely to be true. I think lipedema has problems in both lymphatics and blood vessels.In other words, the capillaries that supply fat cells in lipedema women are fragile and damage easily, resulting in frequent bruising. In addition, they may be more permeable and leak proteins into the spaces around fat cells. These proteins tend to attract lymph fluids and cause swelling. The lymph system itself may also be somewhat defective, and the two of these factors (vascular permeability and lymph fluid transport issues) can add together to make things worse.
Summary
The bottom line is that nobody really knows what causes lipedema, but it's probably a combination of several things. One recent hypothesis proposes:
Lipedema is an estrogen-regulated polygenetic disease, which manifests in parallel with feminine hormonal changes and leads to vasculo- and lymphangiopathy. Inflammation of the peripheral nerves and sympathetic innervation abnormalities of the subcutaneous adipose tissue also involving estrogen may be responsible for neuropathy. Adipocyte hyperproliferation is likely to be a secondary phenomenon maintaining a vicious cycle.This is more or less saying "all of the above." In all likelihood there is a tendency to inherit lipedema, perhaps through an underlying problem with the lymph or vascular system. Or perhaps it's underlying endocrine or autoimmune issues, with a strong sensitivity to inflammation and estrogen exposure. Or perhaps it's all of these, or something else entirely.
Whatever the combination is, it tends to create overgrowth of fat cells in certain areas. It is not yet known whether this is due to hypertrophy (an increase in size of fat cells) or hyperplasia (an increase in number of fat cells) but it's probably both.
These fatty deposits have particularly fragile capillaries that tend to leak fluids and proteins. These stress the lymph system over time, leading to the secondary development of lymphedema in some cases.
One major question that lingers in my mind is why some women do not progress very severely in their lipedema, yet other women do. Some never go beyond Stage 1 or Stage 2, yet others rapidly develop Stage 4 lipo-lymphedema. Why do some experience such severe manifestations of this condition and others do not?
If we can figure this out, I believe we will find many of our answers about the base cause of lipedema and how to treat it.
Possible Associated Conditions
Many women with lipedema also have other conditions, commonly referred to as "co-morbidities." Here are a few that are commonly seen.
Hypothyroidism or Other Endocrine Issues
As noted above, there may be a connection between lipedema and endocrine issues.
Two of the leading experts in the field note that many women with lipedema have thyroid issues. If you think you have lipedema and have not been diagnosed with hypothyroidism, you might want to have your thyroid levels checked periodically.
Please note that it's important to read up on the controversies of thyroid testing before having these labs drawn. Have the Free T3 and Free T4 levels checked as well as the TSH levels.
Get your exact numbers, and know how your lab defines normal and abnormal results. Compare your results to various cut-off recommendations; don't accept just "normal" or "borderline" from your care provider. Different doctors and labs use different cut-off recommendations; the same reading can get you an "abnormal" flag from one provider and a "normal" flag from another provider.
Although not all "borderline" numbers need treatment, many people with borderline thyroid numbers and symptoms find they benefit significantly from treatment. In my non-professional opinion, the presence of lipedema plus a TSH around 2.5 or more and symptoms of thyroid issues deserves consideration of a careful trial of meds, especially if there is a history of autoimmune issues in your family. You may need to seek out a naturopath, integrative medicine specialist, or other "alternative" practitioner in order to get this treatment, however, as many traditional doctors will not treat unless the TSH number is well above 5.5.
Some women with lipedema also find that they have adrenal issues, especially adrenal fatigue. This seems not uncommon in women with thyroid or other endocrine issues. Some lipedema doctors recommend getting adrenal testing to check adrenal functioning. However, whether adrenal fatigue is real is controversial in some circles.
Again, some speculate there is a connection between lipedema and pituitary issues. Since the pituitary is the "master gland" controlling all the other glands, perhaps that is the real source of the thyroid or adrenal issues, rather than something limited only to those specific glands.
Polycystic Ovarian Syndrome (PCOS)
PCOS seems to be a common co-condition with lipedema, although many women with PCOS do not have lipedema. Since women with PCOS tend to have an excess of estrogen compared to progesterone, and since lipedema seems to be associated with estrogen-related life changes (puberty, pregnancy, perimenopause), it seems logical that there could be a crossover between PCOS and lipedema.
Typically, women with PCOS have "apple-shaped" bodies (lots of abdominal fat but average-sized legs and hips), which doesn't fit the lipedema body type at all. However, some women with PCOS have more of a pear-shaped body and might want to look at the symptoms of lipedema more closely.
Many women with lipedema have symptoms of PCOS and borderline thyroid levels. It's my own unscientific observation that these women often have fibromyalgia as well.
Not much research has been done on a possible connection between PCOS and lipedema, but this is an area ripe for exploration in the future. Best guess is that many women who have both PCOS and lipedema will benefit from treating their PCOS. It won't make the lipedema go away, but it might help lessen its impact and progression.
Insulin Resistance
Many women with lipedema also have strong insulin resistance, perhaps related to concurrent PCOS.
On the other hand, most doctors would blame the obesity common with lipedema as the reason for insulin resistance. But insulin resistance and obesity is a chicken-and-egg question ─ which causes which? Was there an underlying insulin resistance which predisposed the woman to gain a lot of weight and worsen the lipedema? Or did the person gain a lot of weight first and then develop insulin resistance and worsening lipedema?
Women's experiences suggest that the insulin resistance usually comes first and predisposes to everything else later, but it's hard to prove that. And of course, weight gain may make everything worse in a vicious circle.
Either way, if you have lipedema, you should check your insulin levels. If they are high, it would probably benefit you to try to normalize them. It might not affect the lipedema much, but it might help lessen further weight gain, and it probably would lessen the risk for diabetes, stroke, and heart disease later on.
Nutritional Deficiencies
Some resources note that many women with lipedema have very low levels of Vitamin D, iron, and Vitamin B12. No one is sure why this might be, but there are a couple of theories around.
Vitamin D is fat-soluble, so most doctors assume that extra fat sequesters Vitamin D in the body, making it less available in the blood. However, other doctors point out that there is actually no proof of this theory and it's often promoted as fact when it is really just a theory with no supporting evidence. Whatever the reason, many doctors now believe that high-BMI people need higher doses of Vitamin D supplementation than average-sized people.
Low iron levels (or low ferritin levels, which lead to iron-deficiency anemia) may be associated with hypothyroidism. This may particularly be a problem for women in perimenopause, when some experience very heavy periods before their bodies shut down menstrual cycles altogether.
People with hypothyroidism can tend to have lower stomach acid, which may be one reason why they don't absorb dietary iron or Vitamin B12 very well. Low stomach acid can also predispose to intestinal yeast overgrowth, which may also inhibit absorption of nutrients.
If women with lipedema have higher rates of hypothyroidism, and if hypothyroidism tends to lower stomach acid and make it harder to absorb certain nutrients, then it makes sense that women with lipedema might have more nutritional deficiencies. On top of that, years of restrictive dieting and bariatric surgeries like gastric bypass put some women even more at risk.
Some women with lipedema report improvement with an anti-inflammatory diet, as noted above. This diet often involves leaving out dairy and gluten, among other things. Interestingly enough, people with low stomach acid often report having trouble with dairy and gluten. So perhaps there is a connection.
None of these connections have been proven conclusively, but they certainly are interesting. Perhaps taking out dairy and gluten can help, or perhaps increasing stomach acid levels (via daily apple cider vinegar or Betaine consumption) makes it possible to process those foods more easily and improve levels of ferritin, Vitamin D, and Vitamin B12.
Either way, women with lipedema (especially those with hypothyroidism) should watch for nutritional deficiencies and treat if needed.
Eating Disorders
A number of lipedema resources note the possibility of eating-disorders. One clinic in Germany found that 74% of their patients with lipedema had eating-disordered behaviors.
This is probably an overestimate. Most women with lipedema do not have true eating disorders, but some have flirted with them. Others clearly do have eating disorders, and that must be addressed in order to improve health.
Eating disorders can occur with lipedema because people have spent years being shamed and lectured into trying to lose weight. Yet lipedemic fat is extremely resistant. Often their approaches get more and more extreme as each diet fails. Is it any wonder, then, that some develop eating-disordered behaviors?
Some do truly develop into the binge-eating, housebound stereotype that TV programs love to feature. Some overeat for emotional reasons. Some learn to binge and purge to try and control their weight. Others become fat anorexics, following rigid diet restrictions and extreme over-exercising in a futile effort to control their size. The study from Germany found that 16% of their lipedema patients were actually anorexic in their behaviors, more than were bulimic or binge-eaters.
Although most people with lipedema do not have eating disorders, it's important to recognize that some do, and that this is a recipe for serious difficulties. Care providers shouldn't automatically assume that a woman with lipedema has an eating disorder, but if one exists, it is vitally important that it get treated too.
Immune System
Some resources describe a generally depressed immune system in women with lipedema. This may make you prone to easily getting illnesses and having a hard time healing from them.
Whether this is a function of the lipedema itself or the possible accompanying issues (i.e. hypothyroidism, auto-immune issues, chronic nutritional deficiencies) is not clear, but it is probably a good idea to be very proactive about avoiding illness.
Fibromyalgia
Anecdotally, there seem to be a lot of women with lipedema who also experience fibromyalgia. Since some believe that fibromyalgia is an autoimmune issue, the possibility that lipedema also has autoimmune components might explain a connection.
Fibromyalgia is not the same as lipedema, of course, since fibromyalgia patients have tremendous sensitivity to touch/pressure all over their bodies, and pain is mostly limited to the legs in lipedema.
However, perhaps difficulty with efficient lymph drainage explains similar symptoms. One Manual Lymph Drainage (MLD) therapist notes that many women with fibromyalgia find some relief from their pain levels with MLD therapy. Research does seem to support that MLD can be an effective treatment both for lipedema and for fibromyalgia.
Varicose Veins
In spider veins, small red spidery capillaries are visible just beneath the surface of the skin, spreading out like a spider web. This is not dangerous, but some people are bothered by its looks.
If you look very closely you can see spider veins in the picture to the left. Look just above and to the inside of the knees at the faint red lines. (You can see other pictures of spider veins here.)
Varicose veins and Venous Insufficiency can also be a problem for some people with lipedema. Good blood flow can be impeded by the extra fat deposits and the fragility and permeability issues. This may lead to blood pooling in some areas instead of circulating efficiently.
Hypermobility
Some resources have noted that many women with lipedema tend to be hypermobile, that is, their ligaments tend to be looser than average and therefore the women more flexible, at least in childhood.
This seems to be borne out in anecdotal evidence, though the hypermobility can vary from mild to significant. This can then lead to joint issues later in life.
Fallen Arches
Some lipedema resources report that "flat feet" (a.k.a. fallen arches) is more common in women with lipedema.
Is this just a function of a typically higher weight, or is this related to the lax ligaments and hypermobility that some have noted with lipedema? No one is sure, but it does seem logical that if lipedema women have hypermobility and joint issues, they might also tend to have fallen arches.
Joint Issues
Knee osteoarthritis is another issue common to women with lipedema. One 2009 study found that more than half of their patients diagnosed with lipedema also experienced significant knee pain.
Knee osteoarthritis seems to be common as people with lipedema age, and at a fairly early onset compared with the general population. One resource notes "early onset of degenerative joint changes and arthritis" among the symptoms commonly associated with lipedema.
Of course, some providers question whether knee arthritis is more common simply because women with lipedema tend to be heavier. However, the authors of the 2009 study noted (my emphasis):
Second, as lipedema progresses, fat pads around the knees build up and can alter the mechanics of the knees. The gait may be thrown off and stress the knees.
Third, hypermobility issues may exacerbate joint issues. As women with lipedema age, this hypermobility combines with gait changes and fluid irritation in the knee to result in significant knee pain and rapid development of arthritis, especially in the face of an injury or trauma to the area.
Muscle Weakness
In addition to joint issues, there may be an increased level of muscle weakness, as well as weak connective tissue and joint laxity in those with lipedema.
This is a significant finding because one way to treat knee issues is to strengthen the muscles around the knees. However, if these muscles weaken as lipedema worsens (and do not respond to physical therapy and strengthening exercises), that may be another reason why mobility can be so affected.
Mobility Issues
Between the joint issues, hypermobility, muscle weakness, pain, and lipo-lymphedema, mobility issues often become very significant in people with lipedema as they age.
Unfortunately, many people with lipedema are denied joint replacement surgery because they have elevated BMIs and doctors refuse to operate on them until they lose weight. But significant weight loss to "acceptable" BMIs is nearly impossible for people with lipedema, so they are never able to get their knees or hips replaced, and their increasing pain levels continues to decrease their mobility. Some end up in wheelchairs or scooters, and this lack of mobility creates even more lymphedema and fat deposits in a vicious feedback loop.
That's why it's so important to stay as active as your circumstances permit. It slows the progression of lipedema and lymphedema, as well as being good for your heart and other systems.
Mobility issues is another reason why it's so important that lipedema becomes more recognized as a medical condition deserving treatment.
At this point, the medical stigma of obesity among many doctors means that this condition often goes undiagnosed, with unrealistic weight loss prescribed when symptoms arise. Sufferers are often denied access to the treatments that do work until they become progressively more disabled and immobile, and then are made fun of in society when they use mobility aids like scooters.
It's only by raising awareness of lipedema and its treatments that more women will get the treatments that will help most and the stigma surrounding this condition will diminish.
Knee osteoarthritis seems to be common as people with lipedema age, and at a fairly early onset compared with the general population. One resource notes "early onset of degenerative joint changes and arthritis" among the symptoms commonly associated with lipedema.
Of course, some providers question whether knee arthritis is more common simply because women with lipedema tend to be heavier. However, the authors of the 2009 study noted (my emphasis):
Knee pain is a feature of lipedema, but can also be found in simple obesity. Nevertheless, it appears to be a phenotypic feature and is often a complaint in pure lipedema where the BMI is normal.Doctors think that this increased rate of joint issues is probably because of three different factors. First, because the fat deposits tend to have pockets of fluid around them and because lymph flow is inhibited, this excess fluid will tend to flow to areas of least resistance ─ the joints. This can irritate the joints and cause pain.
Second, as lipedema progresses, fat pads around the knees build up and can alter the mechanics of the knees. The gait may be thrown off and stress the knees.
Third, hypermobility issues may exacerbate joint issues. As women with lipedema age, this hypermobility combines with gait changes and fluid irritation in the knee to result in significant knee pain and rapid development of arthritis, especially in the face of an injury or trauma to the area.
Muscle Weakness
In addition to joint issues, there may be an increased level of muscle weakness, as well as weak connective tissue and joint laxity in those with lipedema.
This is a significant finding because one way to treat knee issues is to strengthen the muscles around the knees. However, if these muscles weaken as lipedema worsens (and do not respond to physical therapy and strengthening exercises), that may be another reason why mobility can be so affected.
Mobility Issues
Between the joint issues, hypermobility, muscle weakness, pain, and lipo-lymphedema, mobility issues often become very significant in people with lipedema as they age.
Unfortunately, many people with lipedema are denied joint replacement surgery because they have elevated BMIs and doctors refuse to operate on them until they lose weight. But significant weight loss to "acceptable" BMIs is nearly impossible for people with lipedema, so they are never able to get their knees or hips replaced, and their increasing pain levels continues to decrease their mobility. Some end up in wheelchairs or scooters, and this lack of mobility creates even more lymphedema and fat deposits in a vicious feedback loop.
That's why it's so important to stay as active as your circumstances permit. It slows the progression of lipedema and lymphedema, as well as being good for your heart and other systems.
Mobility issues is another reason why it's so important that lipedema becomes more recognized as a medical condition deserving treatment.
At this point, the medical stigma of obesity among many doctors means that this condition often goes undiagnosed, with unrealistic weight loss prescribed when symptoms arise. Sufferers are often denied access to the treatments that do work until they become progressively more disabled and immobile, and then are made fun of in society when they use mobility aids like scooters.
It's only by raising awareness of lipedema and its treatments that more women will get the treatments that will help most and the stigma surrounding this condition will diminish.
Skin Infections
Another common problem in the latter stages of lipedema is skin infections.
This is usually not a serious issue until Stage 3 lipedema, or if secondary lymphedema starts to develop. However, sometimes things like bug bites or a seemingly minor cuts or burn can result in serious swelling, redness, and infection, even in the earlier stages of lipedema.
This means that all people with lipedema need to be very vigilant in caring for their legs and watch for minor problems before they develop into major ones.
Erysipelas and cellulitis (bacterial infections of the skin and underlying tissues) are a problem in some people as lipedema becomes severe, and it can be hard to treat because decreased lymph flow inhibits healing.
Infections secondary to lipolymphedema are hard to heal. Many care providers prescribe inadequate dosages of antibiotics in heavier people with skin infections, not realizing that weight-based dosing is needed with some types of antibiotics, or unnecessarily worrying about overloading the person's kidney function.
If not stopped with antibiotics, a skin infection can spread to deeper layers and become necrotizing fasciitis. If it gets into the blood system, a person can get sepsis and even die. Therefore, preventing, watching for and early treatment of any skin infections is an important part of care in people with lipedema, especially in the later stages.
When high BMI people go to the E.R. with cellulitis or other skin infections, they are often under-dosed with antibiotics, even in hospitals that specialize in treating heavier people.
This is a MAJOR problem. Research shows that high BMI people, especially people with a BMI over 50, are often given an antibiotic dose that does not reach full inhibitory response. This may result in an initial improvement of symptoms, but a drastic relapse later on as the bacteria mutate and adapt to the inadequate dosage of antibiotics.
If you have lipedema and develop a serious skin infection, you may need to be very proactive in advocating for yourself. Ask for a wound infection specialist, ask if the type of antibiotic they are prescribing should have weight-based dosing (some do and some don't).
If the wound does not respond well, ask about more proactive wound care, including IV antibiotics, more frequent dosing, and larger doses, as research shows that proactive care like this can improve outcomes better than traditional care.
 |
| Cellulitis infection with lipo-lymphedema; notice the foot swelling from secondary lymphedema |
This is usually not a serious issue until Stage 3 lipedema, or if secondary lymphedema starts to develop. However, sometimes things like bug bites or a seemingly minor cuts or burn can result in serious swelling, redness, and infection, even in the earlier stages of lipedema.
This means that all people with lipedema need to be very vigilant in caring for their legs and watch for minor problems before they develop into major ones.
Erysipelas and cellulitis (bacterial infections of the skin and underlying tissues) are a problem in some people as lipedema becomes severe, and it can be hard to treat because decreased lymph flow inhibits healing.
Infections secondary to lipolymphedema are hard to heal. Many care providers prescribe inadequate dosages of antibiotics in heavier people with skin infections, not realizing that weight-based dosing is needed with some types of antibiotics, or unnecessarily worrying about overloading the person's kidney function.
If not stopped with antibiotics, a skin infection can spread to deeper layers and become necrotizing fasciitis. If it gets into the blood system, a person can get sepsis and even die. Therefore, preventing, watching for and early treatment of any skin infections is an important part of care in people with lipedema, especially in the later stages.
When high BMI people go to the E.R. with cellulitis or other skin infections, they are often under-dosed with antibiotics, even in hospitals that specialize in treating heavier people.
This is a MAJOR problem. Research shows that high BMI people, especially people with a BMI over 50, are often given an antibiotic dose that does not reach full inhibitory response. This may result in an initial improvement of symptoms, but a drastic relapse later on as the bacteria mutate and adapt to the inadequate dosage of antibiotics.
If you have lipedema and develop a serious skin infection, you may need to be very proactive in advocating for yourself. Ask for a wound infection specialist, ask if the type of antibiotic they are prescribing should have weight-based dosing (some do and some don't).
If the wound does not respond well, ask about more proactive wound care, including IV antibiotics, more frequent dosing, and larger doses, as research shows that proactive care like this can improve outcomes better than traditional care.
Summary
As we have discussed in this series, lipedema is a condition that is often mistaken for simple obesity. Diets and weight loss do not substantially reduce its presence, and lipedema often gets worse as people age, sometimes leading to significant mobility issues and life-threatening infections.
Many fat people with lipedema go undiagnosed for years because physicians either have not been taught about this condition (despite it having been discovered in 1940), or have so much weight stigma that they do not recognize the condition as anything other than obesity. Some even deny it is a real clinical entity, despite the fact that is recognized as one by many groups, including the NHS in the U.K.
Fat disorders are only now beginning to get the research attention needed to expand our knowledge but recognition of this disorder still has a long way to go in many parts of the world. Thus many people with lipedema will likely continue to go undiagnosed for some time to come.
Many women discover their condition via massage therapists or physical therapists rather than doctors because doctors are so under-informed about lipedema. Even today, women are being told that there is "no such thing" as lipedema, that they just need to lose weight, to exercise more, or that they are just making excuses for being fat and lazy.
Others are accused of lying about their food intake or exercise habits. Friends, family, and acquaintances may harass them about their weight and think that "lipedema" is just making excuses for bad habits.
Some lipedema sufferers are diagnosed with lymphedema without any mention of lipedema. Some are only diagnosed with lipedema once significant lipo-lymphedema develops and their condition becomes very severe. The fact that many cases of lipedema are only diagnosed after severe lipo-lymphedema develops is a sad statement about the ignorance of lipedema among most doctors.
Even once a woman has a diagnosis of lipedema, care providers can be very apathetic about managing it, or overly pessimistic about its progression so they don't bother providing much care. Women with lipedema often have to fight for adequate care or insurance coverage of needed treatments.
No one really knows what causes lipedema but it likely is hereditary in many cases. It may involve some sort of endocrine, inflammation, and/or auto-immune disorder, and there may also be underlying abnormalities in the lymph or vascular system. As one resource puts it:
More care providers need to familiarize themselves with lipedema so women get diagnosed and treated earlier to keep the condition from progressing. Furthermore, if complications such as knee pain, cellulitis, or lymphedema occur, care providers need to know how to treat them appropriately, instead of just telling the patient to lose weight, as so often happens now.
As one research summary notes:
*Next post: Treatment options
Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. 2010. Lipedema: An inherited condition. Am J Med Genet Part A 152A:970–976. PMID: 20358611 Free full text available here.
Am J Emerg Med. 2012 Sep;30(7):1212-4. doi: 10.1016/j.ajem.2011.05.027. Epub 2011 Dec 12. Underdosing of common antibiotics for obese patients in the ED. Roe JL1, Fuentes JM, Mullins ME. PMID: 22169576
Many fat people with lipedema go undiagnosed for years because physicians either have not been taught about this condition (despite it having been discovered in 1940), or have so much weight stigma that they do not recognize the condition as anything other than obesity. Some even deny it is a real clinical entity, despite the fact that is recognized as one by many groups, including the NHS in the U.K.
Fat disorders are only now beginning to get the research attention needed to expand our knowledge but recognition of this disorder still has a long way to go in many parts of the world. Thus many people with lipedema will likely continue to go undiagnosed for some time to come.
Many women discover their condition via massage therapists or physical therapists rather than doctors because doctors are so under-informed about lipedema. Even today, women are being told that there is "no such thing" as lipedema, that they just need to lose weight, to exercise more, or that they are just making excuses for being fat and lazy.
Others are accused of lying about their food intake or exercise habits. Friends, family, and acquaintances may harass them about their weight and think that "lipedema" is just making excuses for bad habits.
Some lipedema sufferers are diagnosed with lymphedema without any mention of lipedema. Some are only diagnosed with lipedema once significant lipo-lymphedema develops and their condition becomes very severe. The fact that many cases of lipedema are only diagnosed after severe lipo-lymphedema develops is a sad statement about the ignorance of lipedema among most doctors.
Even once a woman has a diagnosis of lipedema, care providers can be very apathetic about managing it, or overly pessimistic about its progression so they don't bother providing much care. Women with lipedema often have to fight for adequate care or insurance coverage of needed treatments.
No one really knows what causes lipedema but it likely is hereditary in many cases. It may involve some sort of endocrine, inflammation, and/or auto-immune disorder, and there may also be underlying abnormalities in the lymph or vascular system. As one resource puts it:
Often mistaken for obesity or unusual weight gain, lipedema is a fat-storage disease that almost exclusively affects women...This chronic disorder affects the legs and arms, causing an abnormal accumulation of fat cells that produce a noticeably disproportionate appearance. There's a genetic component in approximately half of all lipedema cases, and it's not just being overweight or out of shape -- it's truly a disproportion in the affected areas of the body. It's a condition that is not only an overgrowth of fat tissue, but it also has a vascular or lymphatic component with swelling.In other words, it's really NOT about diet and exercise, but about something we don't completely understand yet. Hopefully, finding and treating the hormone or endocrine issues and/or reducing inflammation as much as possible will help. It likely won't make the lipedema go away, but it might help minimize it or slow the progression.
More care providers need to familiarize themselves with lipedema so women get diagnosed and treated earlier to keep the condition from progressing. Furthermore, if complications such as knee pain, cellulitis, or lymphedema occur, care providers need to know how to treat them appropriately, instead of just telling the patient to lose weight, as so often happens now.
As one research summary notes:
Lipedema is a genetically mediated disorder of fat deposition. It results in a characteristic pattern of lower-extremity enlargement that is resistant to diet and thus very demoralizing. It can eventually lead to lymphedema but should not be mistaken for lymphedema in its early stages...This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.Hopefully, once more doctors get past their stigma and prejudices about obesity, more research will be done into how to treat (and hopefully prevent) lipedema.
*Next post: Treatment options
References and Resources
If you think you have lipedema and need help in getting it diagnosed, see this resource. Also print out some of the papers from the links below and take those to your appointment with you. Remind your doctor that this condition is now recognized by the National Health Service in the U.K. and that there is information online about how to diagnose and treat it.
Resources
*Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
If you think you have lipedema and need help in getting it diagnosed, see this resource. Also print out some of the papers from the links below and take those to your appointment with you. Remind your doctor that this condition is now recognized by the National Health Service in the U.K. and that there is information online about how to diagnose and treat it.
Resources
*Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
- http://www.curelipedema.org/# - Cure Lipedema
- http://www.lipomadoc.org/lipedema.html - Website of Karen L. Herbst, PhD, MD, one of the most pre-eminent researchers on lipedema. She is an endocrinologist practicing in Arizona
- http://fatdisorders.org/fat-disorders/lipedema-lipoedema-description - Website of the Fat Disorders Research Society
- http://www.lipv.nl/Lipedema%20a%20frequently%20misdiagnoseds%20and%20misunderstood%20syndrome.pdf - Educational article on lipedema for care providers, good but technical in parts. (Not size-friendly; advocates "rigorous" weight control and suggests bariatric surgery)
- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/ - United States National Library of Medicine, National Institutes of Health
- http://en.wikipedia.org/wiki/Lipedema - Wikipedia article on lipedema
- http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx - United Kingdom's NHS website page on Lipedema
- http://www.lymphedema-therapy.com/Lipedema.htm - Lymphedema Therapy website
- http://www.hanse-klinik.de/englisch/Lipoedema.pdf - article on lipedema from one of the foremost clinics in Germany that treats lipedema
- http://www.lymphedema.com/lipedema.htm - Peninsula Medical summary of lipedema
- http://www.lipv.nl/zslnokycordero.pdf - journal article about lipedema with many pictures
- http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema - Lipedema page from a website specializing in lymphedema information (Lymphedema People)
- http://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes - WebMD article
- http://www.lipedemaliposuctioncenter.com/about-lipedema.html - Liposuction clinic specializing in lipedema patients
- http://www.lymphedemablog.com/2018/05/13/a-closer-look-at-lipedema-and-the-effects-on-the-lymphatic-system/ - Effect of lipedema on the lymphatic system
- Differential Diagnosis for lipedema vs. lymphedema - how to differentiate these conditions
- http://rlbatesmd.blogspot.com/2018/04/lipedema-lymphedema-lipolymphedema.html - blog entry on lipedema vs. lymphedema, written by a plastic surgeon
- http://www.obesityaction.org/educational-resources/resource-articles-2/obesity-related-diseases/lipedeam-and-obesity - article about why lipedema might occur (WLS site)
- http://www.mdjunction.com/forums/dercums-disease-discussions/articles/2888889-lipolymphedema-dercums - details about lipedema and lymphedema
- http://www.lymphnet.org/membersOnly/dl/reprint/Vol.%2019/19-1~UnLip.pdf - reprint of 2007 article on lipedema vs. lymphedema by Klose and Stroessreuter
- http://www.thelymphoedemacliniclondon.co.uk/pages/treatment-for-lipedema-and-lipo-lymphoedema.php - treatment options for lipedema and lymphedema
- http://lipedemaproducts.com/pages/stages - drawings illustrating the different types of lipedema as they progress through the various stages of lipedema
- http://blog.wegohealth.com/2018/07/15/the-phases-of-a-lipedema-diagnosis/ - Guide to navigating a lipedema diagnosis, written by Sarah Bramblette, a prominent lipedema activist
- http://lipedema-simplified.org/ - blog and advocacy from Catherine Seo, who is dealing with lipedema and who is the maker of the new film "Born To Be Fat" about lipedema. (Caution, diet talk, but still a worthwhile resource for Fat-Acceptance folk)
- lipladyfab.wordpress.com - blog of woman dealing with lipedema and undergoing liposuction
- http://www.biglegwoman.com - blog of woman dealing with lipedema
- http://born2lbfat.com/category/livingwithlipedema/ - blog of woman dealing with severe lipedema, including her journey with gastric bypass
- http://lipedemagirl.tumblr.com/me - tumblr account of a woman dealing with lipedema and lymphedema, including having had lap band surgery
- Big Fat Legs http://www.bigfatlegs.com/ - blog of woman dealing with lipedema
- Lipoedema Ladies (U.K.) - http://www.lipoedemaladies.com/ - U.K. support group for lipedema
- http://www.tillysmidt.nl/LIPEDEMA_Englisch_for_Lipoedeem.html - website of Dutch woman with lipedema who was an early voice for treating lipedema (not a size-friendly resource)
- https://www.facebook.com/lilithnixroadtorecovery/posts/537379969717549 - Facebook page of a woman with lipo-lymphedema (this link takes you to her biography and lipedema story)
- http://www.thedoctorstv.com/videos/living-with-lymphedema-and-lipedema - video biography of Sarah from "The Doctors" episode (she has stage 4 lipolymphedema)
- http://www.nursevirginiablog.com/?s=lipedema - Nurse Virginia's blog (not size-friendly)
- https://mylipedemajourney.wordpress.com/ - a thin woman's journey with lipedema and tumescent liposuction to treat it
- http://www.lass.org.au/ - Lipoedema Australian Support Society (LASS)
- http://www.talklipoedema.org/ - U.K. support and information group for lipedema
- https://livingwithlipoedema.wordpress.com/ - a British woman's journey with lipedema, particularly focusing on its emotional effect and the treatments she has tried
- http://www.laurajdavis.com/blog/category/lipolymphedema - one woman's history of lipo-lymphedema, failed attempts at weight loss, and treatment difficulties
- http://lipedemanetworkcanada.com/ - lipedema support, education, and advocacy for Canada
Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. 2010. Lipedema: An inherited condition. Am J Med Genet Part A 152A:970–976. PMID: 20358611 Free full text available here.
Lipedema is a condition characterized by swelling and enlargement of the lower limbs due to abnormal deposition of subcutaneous fat. Lipedema is an under-recognized condition, often misdiagnosed as lymphedema or dismissed as simple obesity. We present a series of pedigrees and propose that lipedema is a genetic condition with either X-linked dominant inheritance or more likely, autosomal dominant inheritance with sex limitation. Lipedema appears to be a condition almost exclusively affecting females, presumably estrogen-requiring as it usually manifests at puberty. Lipedema is an entity distinct from obesity, but may be wrongly diagnosed as primary obesity, due to clinical overlap. The phenotype suggests a condition distinct from obesity and associated with pain, tenderness, and easy bruising in affected areas.Med Hypotheses. 2014 Aug 23. pii: S0306-9877(14)00295-3. doi: 10.1016/j.mehy.2014.08.011. [Epub ahead of print] Pathophysiological dilemmas of lipedema. Szél E1, Kemény L2, Groma G2, Szolnoky G2. PMID: 25200646
Lipedema is a common, but often underdiagnosed masquerading disease of obesity, which almost exclusively affects females. There are many debates regarding the diagnosis as well as the treatment strategies of the disease. The clinical diagnosis is relatively simple, however, knowledge regarding the pathomechanism is less than limited and curative therapy does not exist at all demanding an urgent need for extensive research. According to our hypothesis, lipedema is an estrogen-regulated polygenetic disease, which manifests in parallel with feminine hormonal changes and leads to vasculo- and lymphangiopathy. Inflammation of the peripheral nerves and sympathetic innervation abnormalities of the subcutaneous adipose tissue also involving estrogen may be responsible for neuropathy. Adipocyte hyperproliferation is likely to be a secondary phenomenon maintaining a vicious cycle. Herein, the relevant articles are reviewed from 1913 until now and discussed in context of the most likely mechanisms leading to the disease, which could serve as a starting point for further research.Lipedema and Undertreatment of Skin Infections
Am J Emerg Med. 2012 Sep;30(7):1212-4. doi: 10.1016/j.ajem.2011.05.027. Epub 2011 Dec 12. Underdosing of common antibiotics for obese patients in the ED. Roe JL1, Fuentes JM, Mullins ME. PMID: 22169576
BACKGROUND: ...Obesity alters the pharmacokinetic profiles of various drugs. Although there are guidelines for dose adjustments for many of the antibiotics commonly used in the emergency department (ED), they are seldom used. METHODS: This is an institutional review board-approved retrospective study at an American Society of Metabolic and Bariatric Surgery Center of Excellence and a level I trauma center with annual ED volumes of more than 80,000 visits. Data were retrospectively collected from ED pharmacy records during a 3-month period in 2008. Any first dose of cefepime, cefazolin, or ciprofloxacin administered in our ED to a patient recorded as both more than 100 kg and with a body mass index greater than 40 kg/m(2) was compared with our hospital guidelines and found to either adhere or not adhere to those guidelines. RESULTS: ...Adherence rates for first dose of cefepime, cefazolin, and ciprofloxacin administered, respectively, were 8.0%, 3.0%, and 1.2%. CONCLUSION: Emergency physicians frequently underdose cefepime, cefazolin, and ciprofloxacin in obese patients. Underdosing antimicrobials presents risk of treatment failure and may promote antimicrobial resistance. Education is necessary to improve early antibiotic administration to obese patients.J Prim Care Community Health. 2015 Apr 29. pii: 2150131915583659. [Epub ahead of print] Cellulitis in Obesity: Adverse Outcomes Affected by Increases in Body Mass Index. Theofiles M1, Maxson J2, Herges L2, Marcelin A3, Angstman KB2. PMID: 25925834
...This study was a retrospective chart review of 637 adult primary care patients designed to evaluate rates of treatment failure of outpatient cellulitis among patients of varying BMI. Treatment failure was defined as (a) hospital admission for intravenous antibiotics, (b) prolonged antibiotic course, or (c) requiring a different antibiotic after initial course. RESULTS: Adverse outcomes were not statistically significant between normal BMI and those with BMI ≥40 kg/m2. A subset of patients with a BMI ≥50 kg/m2 was noted to have approximately twice the rate of adverse outcomes as the normal BMI group...CONCLUSIONS: Patients with cellulitis weighing >120 kg or with a BMI ≥50 kg/m2 were at greatest risk for treatment failure in the outpatient setting, even when controlling for comorbid diabetes and tobacco use. As morbid obesity continues to become more prevalent, it becomes imperative that primary care physicians have better antibiotic dosing guidelines to account for the physiologic effects of obesity to minimize the risk of increased morbidity, health care costs, and antibiotic resistance.
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