Saturday, July 18, 2015

Lipedema, Part 5a: Traditional Treatment Options

Image from Lipoedema Australia Support Society (LASS)
June was Lipedema Awareness Month, so we have been talking about Lipedema, sometimes known as "painful fat syndrome" or "big leg" syndrome. But there is too much information for only one month; so we are keeping the conversation going. Let's talk about treatment options.

In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth. It results in an abnormal accumulation of fat, particularly in the lower half of the body; often the arms are affected too.

As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas. Because secondary lymphedema can be a late consequence of lipedema, lipedema and lymphedema treatments have often overlapped.

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 lipedema 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.

In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

Now, in Part Five, we will discuss possible treatments for lipedema in detail. Because we want to give more detail about each option, we are breaking the treatments into several sub-posts:
  • Traditional Treatments 
  • "Weight Control" and Special Nutritional Approaches (trigger warning)
  • Tumescent Liposuction
  • Alternative Medicine Treatments 
In the final installment, Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

Treatment of Lipedema: Overview

The progression of lipedema is highly variable. While the traditional medical teaching is that lipedema is always progressive, some people report that they have been able to stop or even achieve "remission" from lipedema with certain treatments. On the other hand, these reports are anecdotal, and not everyone finds that these treatments help all that much.

You cannot tell how any one case is going to develop over time, and you can't tell what the best treatment will be for any individual. The best thing to do is to keep your options open and explore several different modes of treatment. 

As we discuss the options available, remember that the main goals of lipedema treatment are to:
  • Minimize discomfort
  • Slow/arrest the worsening of the condition
  • Prevent secondary lymphedema
  • Maintain mobility and everyday functions
Research your choices thoroughly, consult healthcare providers, and explore your options. Remember, you are always the boss of your own body and only YOU get to make the final treatment decisions for your needs. 

Mainstream Treatments for Lipedema

There are no pills you can take to fix lipedema, and there are not a lot of highly effective traditional medical treatments at this time. Nothing will cure or reverse it.

However, you may be able to arrest lipedema's progression or minimize the complications. This is VERY IMPORTANT because lipedema can become very disabling.

Most of the traditional treatments were designed to improve lymph flow or reduce swelling. Some have been shown to be quite helpful, while others have been discredited. These treatments have included: 
  • Manual Lymph Drainage
  • Compression garments, bandages, and pumps
  • Complete Decongestive Therapy
  • Exercise
  • Lymph Node Transplant
  • Diuretics
Manual Lymph Drainage Treatments 

Image from mfbewley.org.uk/mld
Because accumulated fat in lipedema can put pressure on lymph vessels and interfere with its free flow, swelling and secondary lymphedema can be side effects of lipedema. Therefore, one of the first recommendations of many doctors is to do Manual Lymph Drainage Treatments (MLD).

There is good evidence that treatment with MLD can reduce edema and leg volume, and perhaps also reduce capillary fragility, resulting in less bruising and fluid accumulation. Small, short-term research has also shown improvement in pain levels for some patients.

Image from amylhwilliams.com 
Pictures often show dramatic differences in leg size before and after MLD in people with lipo-lymphedema. The woman in the picture experienced a loss of 65 lbs. of fluid after only 2 weeks of MLD! That's how bad lipo-lymphedema can be in some cases.

The most important benefit to Manual Lymph Drainage is that it reduces swelling. This keeps lymph flow as efficient as possible, which in turn may help reduce progression of the disease and improve/sustain mobility. However, while short-term research clearly shows MLD is effective, it usually needs other treatments as well to sustain the benefits long-term.

Anecdotally, there are some impressive success stories of how Manual Lymph Drainage can help, especially those with secondary lymphedema. A trained therapist in your area can be found here or here. But the best results of all seem to come from MLD used with compression. Otherwise, all the benefits of the MLD can be quickly lost.

Compression Garments, Bandages, and Pumps

Compression bandages and compression sock,
Image from amylhwilliams.com
One of the hallmark treatments for lipedema is the use of compression bandages, garments, or pumps. They support the tissue and reduce swelling, which reduces pain and leg ache. Compression can be used on its own or used as an adjunct to MLD to help maintain progress.

Treatment may be started with bandages at first because compression garments can be too painful for severe cases in the beginning. In the picture above, several layers of bandaging are used and then a compression sock is placed on to of the bandaging.

Pneumatic pump for compression
Another option is intermittent pneumatic compression, which is a pump that inflates and deflates around the leg to compress it. This type of device is often used for patients with chronic lymphedema; its use has been expanded to patients with lipedema too. A doctor's prescription is needed to get a pump, but the good news is that many insurance companies will pay for it.

In the past, pumps were not very efficient and sometimes caused more harm than good to the lymph system. However, newer pumps have been developed that have improved results. Pumps do not replace MLD or compression garments, but they augment other treatments. There are generally two companies who make the pumps, Lympha Press® and Flexitouch®.

There's not a lot of research on the use of pumps for lipedema. One study did not find that the addition of pneumatic compression had any additional benefit over MLD and bandaging. However, anecdotally, many lipedema patients find that they are helped by a pump. You can read more about types of pumps for lipedema here and here.

Image from lipedemafitness.blogspot.com
Knit compression garments are used to keep swelling down on a regular basis. There are many options in compression garments. Those meant for lymphedema may have pressures which are too painful for lipedema patients, who have a greater sensitivity to pain. There is debate over whether flat-knit or round-knit garments are better; according to some, the round-knit can lead to a kind of "tourniquet" effect in some lipedema patients. Others can only tolerate a looser compression garment. The type of garment right for you depends on the stage of lipedema you are in, whether you have large lobes of fat, how large the limb is, and how much pain you have. There are also special sleeves for those with arm lipo-lymphedema.

Some compression garments are not terribly attractive, but others can be more stylish, as seen here. One company that specializes in creating compression garments and products for people with lipedema (as opposed to lymphedema) is lipedemaproducts.com.

You can read more about compression garments here, and the pros and cons of various compression garments here and here. Some people also use garment glue to help keep the compression bandages/garments in place because they can start to get loose and slip as the swelling goes down.

One study suggests "absolutely uncompromising compression therapy" (which sounds rather ominous) for lipedema treatment. However, there are significant barriers to using compression garments.

Compression garments are hard to find these in the sizes needed for people with significant lipedema. Often they have to be custom-made to your size. They are expensive, and many insurance companies balk at paying for them (which is ridiculous, considering the cost of treating cellulitis).

Compression garments should be hand-washed daily, and for best results must be worn constantly (you need extra pairs to rotate for washing). They are hot and restrictive, so they are burdensome during the summer. They are difficult and time-consuming to put on, and can restrict activities.

Image from biglegwoman.com 
Yet many lipedema patients (especially those with lipo-lymphedema) swear by their usefulness and ability to relieve pain. Many are quite creative in carrying on their daily lives despite the challenges of using compression.

Compression garments are worth trying to see if they help you feel better or lessen swelling. For many, especially those with lymphedema, they are truly a life-saver.

However, no therapy is absolutely required of anyone. You may try it and decide you don't like it, or find it doesn't improve your symptoms. If so, it is certainly your option to discontinue them, or to use them only if symptoms flare. Although compression is a mainstay of most lipedema treatment, it's never compulsory.

Complete Decongestive Therapy

Complex or Complete Decongestive Therapy" (CDT) refers to the package of Manual Lymph Drainage plus compression treatments and sometimes other physical therapy.

It is generally felt that it takes the combination of MLD plus compression to really achieve and sustain real differences in a lipo-lymphedema patient's condition. 


Before and after 4 months of CDT; Image from Klose and Stroessreuter 2007
These pictures are of a patient with severe lipo-lymphedema. She lost a total of 60 kg, or about 132 lbs. of fluid, just from CDT treatment over several months. That's how effective CDT can be for people with significant Stage 4 lipedema.
Before and after CDT; Klose and Stroessreuter 2007
Look how much the lobes on her left leg have been reduced. Notice how much more normal her stance is after the treatment compared to beforehand. I would imagine that helped improve her mobility significantly.

However, not everyone gets these kinds of dramatic results. The more advanced your lipo-lymphedema, the more likely you are to have significant improvement, but all it can do is relieve the worst of the swelling. It cannot reverse lipedema.

In someone with severe lipo-lymphedema, it may be necessary to start treatment slowly because of high pain levels. Very severe cases often start with MLD alone, then add compression bandaging, and then transition into compression garments and pumps as the patient tolerates it. Another alternative may be kinesio taping, which can offer less intense compression.

Bottom line, Complete Decongestive Therapy is the standard of care for treatment of lipedema. 

Research and women's stories clearly support CDT as an effective, non-invasive treatment for many people with lipedema. 

Exercise

Exercise is crucial to keep lymph flowing well. The lymphatic system doesn't have a pump like the heart (which pumps for the blood vessels).

The lymph system depends on muscle activity and breathing to keep the lymph moving in the body. This means exercise is vital to lipedema patients. 

Image of Sarah from born2befat.com 
Mobility can be difficult in later stages of lipedema, which means that people exercise less. The lymph system can't pump as well without exercise, and this creates a vicious circle with worsening secondary lymphedema. Regular daily exercise may be particularly important for lipedema patients.

Swimming, water aerobics, and walking in water seem to be the most helpful exercise to folks with lipedema. This is probably because being in water lessens the weight-bearing load, making it easier to move. The pressure of the water can often help force intercellular fluids to even out, so being in water lessens edema. Plus, it just feels good!

Of course, water exercise is not without its challenges. It can be difficult to find a swimsuit in large sizes, it can be expensive to belong to a suitable pool, it can be hard to get in and out of the water in some pools, and some people experience significant public ridicule. Yet water exercise is so freeing that it can be worth the trouble.

Cycling on a stationary bike is another oft-recommended form of exercise for lipedema. Because it can be done seated, less weight is placed on the legs, yet they get plenty of movement to improve blood flow and lymph flow. Of course, it takes money to buy a stationary bike, but many used ones are available cheaply online. Check Craigslist or eBay. Be sure to test it out before you buy it, as there are many variations in design and function and not every model suits every body.

Photo by Martin Ehleben
Some people with lipedema really like yoga, especially those in earlier stages. Because yoga involves a lot of deep breathing and strengthening, it can be good for lymph flow and improving muscle tone in people with lipedema. There is even a special type of yoga designed just for improving lymph flow.

However, yoga can be challenging for those with mobility or muscle weakness issues, as well as those with significant swelling or lobes of fat. Sadly, not all yoga teachers are willing to adapt poses for larger bodies or have non-judgmental attitudes towards all bodies.

On the other hand, there are yoga classes that specialize in working with people of size or people with physical challenges. There are also online videos that specialize in yoga for larger bodies.

So while you might encounter some yoga classes that are not welcoming or appropriate for you, don't give up the search. Others might be quite helpful.

Image from needakrebounders.com
Another exercise recommended by some specialists is rebounding. This is a mini-trampoline, preferably with a stability bar.

Rebounding can be especially useful to those who can't do regular exercise because of mobility issues or joint pain. It can also be a good alternative to water exercise, cycling, or yoga for those who have barriers to those activities.

In rebounding, the woman stands on the mini-trampoline, holding on to the stability bar, and gently bounces or "surges" up and down for a few minutes without the feet actually leaving the trampoline.

According to one source, rebounding is particularly helpful because:
Rebounding (mini-trampoline) causes core muscles and large muscle groups to contract, resulting in the rhythmic compression of the veins and arteries, which more effectively moves fluids, both blood and lymphatic, through the body and back to the heart, lowering peripheral blood pressure and lightening the heart's load... 
The up and down motion effectively opens and closes the millions of one-way valves found within our Lymphatic Systems...Most of our valves are positioned vertically, hence vertical motion is favorable simply due to our anatomy. For example, interstitial fluid from the lower extremity is moved upward where it is filtered and finally drained back into the blood in a particular location, up at the clavicle level. ("Thoracic Duct" of the Lymphatic System, our internal vacuum cleaner.)
However, some have raised the concern that there really aren't any clinical trials to see if rebounding actually helps or harms.

High impact exercises like running, jogging, and aerobics are not recommended for lipedema. Sports that involve quick turns and stress on the knees, like tennis, soccer, or skiing, may also be risky. This doesn't mean you can't do them in the early stages, but you need to be very careful. And if your lipedema advances or you start to experience knee issues, you should avoid them. Lipedema strongly predisposes to joint issues and arthritis; an injury could accelerate this process.

Although there are challenges, there are forms of exercise suitable for nearly everyone with lipedema. Even if you are pretty immobile from severe lipo-lymphedema, deep breathing exercises and flexing feet and ankles can help maintain some lymph flow. Another option suggested by some experts is Whole Body Vibration (see below), since this involves just standing on a vibrating platform.

Exercise is not going to make you lose weight, but it may help you maintain your mobility and improve lymph flow in your body. We don't have data to know if it will prevent or delay progression of the lipedema but it seems logical that it might help. Plus, exercise benefits overall health by improving blood sugar, insulin resistance, and cardiovascular health, so it's win-win on several counts.

Keeping as active as your condition permits seems like a common-sense thing to do. Make exercise as much of a priority as you can.

However, it's important to acknowledge that exercise can be quite difficult at a certain stage of progression. Significant creativity may need to be used. But as with every other option, exercise is always a choice, not a requirement.

Lymph Node Transplant

Some women with secondary lymphedema are looking into lymph node transplants, which have helped many women with primary lymphedema. In this, a surgeon takes lymph nodes from another area of your body (usually the neck, armpit, or groin) and transfers them to a trouble area. The blood vessels supporting the lymph nodes are connected to the local blood vessels. In time, these lymph nodes will hopefully start growing new lymph vessels that connect up with other lymph vessels. In this way, doctors hope to improve lymph flow in a badly-affected area.

This is a new technique, mostly used for primary lymphedema or cancer patients. There is not much information on its use in lipo-lymphedema patients, but it's an interesting possibility to keep tabs on for the future.

Diuretics

Diuretics, commonly known as "water pills," are designed to help clear excess fluids from your body. They are typically prescribed for congestive heart failure, lymphedema, or other conditions with chronic edema.

Since many doctors focus mainly on the swelling part of lipedema, they often prescribed diuretics for lipedema patients in the past. Now, however, it is generally recognized that diuretics are very ineffective in treating lipedema.

One review noted that diuretics in lipedema patients may even cause complications:
Diuretics can quickly deplete lymphedema fluid but concentrate protein in edematous tissue promoting fibrosclerosis. Use of diuretics in lipedema before lymphedema may result in the development of pseudo Barrter's syndrome characterized by hypokalemic-hypochloremic alkalosis, hyperactivity of the renin-angiotensin-aldosterone system and elevation of atrial natriuretic peptide.
Despite the fact that swelling is involved in lipedema, don't let anyone talk you into taking diuretics. Swelling is not the root of the problem; it is only a side effect. Diuretics do not help and may well harm the lipedemic patient.

Summary

Getting a diagnosis of lipedema and/or lipolymphedema can be overwhelming emotionally. It's hard to know what questions to ask, which treatments to consider, or where to go for answers. If you have been diagnosed recently, please read this article by lipedema activist Sarah Bramblette on dealing with your diagnosis.

Most doctors prescribe traditional treatments for lipedema. The most effective seems to be Complete Decongestive Therapy, which includes Manual Lymph Drainage plus some form of compression (bandaging, pumps, or compression garments). There is good research that shows that CDT is modestly effective in lessening the impact of lipedema, so this is probably one of the first treatments that should be considered.

However, should this be the only mode of treatment? Some lipedema websites make the valid point that lymphedema specialists have been the ones discovering and treating most lipedema patients. This means that they may have an unconscious bias towards seeing everything through a lymphedema lens, possibly blinding them to other options. They say:
Historically, lymphedema doctors were early to discover lipedema and unfortunately adopted it as an orphan lymph disorder. These doctors say lipedema is incurable. They say lipedema has progressive stages that once arrived at cannot be reversed. They say treating it with lymphedema protocols is the appropriate approach, not to cure, but to give relief as bodies swell inevitably and painfully to end stage. Without question or research, the medical community follows along with lymphedema doctors' untested assumptions. 
As a result, some lipese accept that there is no cure and receive standard lymphedema treatments. These lipese do not improve without daily intervention; expensive wraps and machines to compress "edema" through the lymphatic system. Other lipese say: "Give us clinical trials before you tell us we are incurable." 
Consequently, while waiting for real research, many of us have begun to discover and to share ways we treat lipedema successfully, meaning we put ourselves in remission. We have succeeded in improving our lives. We have taken our bodies and minds back. We look forward to our future, not free of lipedema, but rather free of the specter of stages we "must" progress towards.
If you look at the traditional treatments discussed in this post, you can see that most of them are indeed aimed at lessening symptoms of lymphedema. But what if we go beyond the lymphedema focus? What other treatments are helpful?

Despite the fact the lipedema has been known about for 75 years, there is limited research on what works best. As a result, people are experimenting with many different treatments. In our next posts, we will explore a few more of these.

For example, many doctors recommend special nutritional diets to lose or "control" weight and reduce symptoms of lipedema. We will examine these suggestions in our next post ─ NOT with the idea of promoting them but with the goal of examining the actual evidence for such recommendations. [Those who find any mention of weight loss or dieting triggering may want to skip that post. It will be the only post covering this, so be sure to return for the next posts in the series.]

One of the most exciting new directions in lipedema treatment is lymph-sparing tumescent liposuction, and our third Treatments post will be on this. While bigger and longer studies are needed, what research we have on this new type of liposuction is very promising so far.

Other women are using treatments from alternative medicine to help their lipedema, and our fourth Treatments post will be on this.

While traditional treatments are primarily aimed at reducing secondary lymphedema, there are other options for lipedema patients. In the next few posts, we will spend time looking at these other options and what research exists on their efficacy.

Again, consult your healthcare provider for their advice, do your own research, and experiment to find what works best for YOU.



References and Resources

Information 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.
Support Groups for Lipedema Patients
Websites About Those Dealing with Specific Lipedema Treatments
Treating with Complete Decongestive Therapy

Acta Pharmacol Sin. 2012 Feb;33(2):155-72. doi: 10.1038/aps.2011.153. Rare adipose disorders (RADs) masquerading as obesity. Herbst KL. PMID: 22301856
...People with RADs [Rare Adipose Disorders] do not lose SAT [subcutaneous adipose tissue] from caloric limitation and increased energy expenditure alone...Treatment recommendations focus on evidence-based data and include lymphatic decongestive therapy, medications and supplements that support loss of RAD SAT....
Lymphology. 2008 Mar;41(1):40-4. Complete decongestive physiotherapy with and without pneumatic compression for treatment of lipedema: a pilot study. Szolnoky G1, Borsos B, Bársony K, Balogh M, Kemény L. PMID: 18581957
...We studied whether complete decongestive physiotherapy (CDP) alone or combined with intermittent pneumatic compression (IPC) could improve the treatment outcome in women with lipedema using a prospective, randomized trial. Eleven patients received CDP (60 min) and thirteen CDP (30 min) plus IPC (30 min) once daily in a 5-day-course. Subsequent to drainage, all subjects received multilayered compression bandaging, physical exercise and skin care. Treatment efficacy was evaluated by limb volume reduction. Both groups achieved significant reductions in mean lower extremity volume (p < 0.05). The addition of IPC is safe, although it provides no synergistic benefit to CDP in leg volume reduction under these study conditions.
Lymphology. 2011 Dec;44(4):178-82. Lymphedema treatment decreases pain intensity in lipedema. Szolnoky G1, Varga E, Varga M, Tuczai M, Dósa-Rácz E, Kemény L. PMID: 22458119
Lipedema is a disproportional obesity featuring light pressure-induced or spontaneous pain. On the basis of our clinical observations, lymphedema therapy, as practiced in our clinic, reduces the perception of pain beyond leg volume reduction. We therefore aimed to measure pain intensity prior and subsequent to treatment. 38 women with lipedema were enrolled in the study with 19 patients undergoing treatment and 19 serving as the control group using exclusively moisturizers. Treatment consisted of once daily manual lymph drainage (MLD), intermittent pneumatic compression (IPC), and multilayered short-stretch bandaging performed throughout a 5-day-course. Pain was evaluated with a 10-item questionnaire, a pain rating scale (PRS), and the Wong-Baker Faces scale. Treatment resulted in a significant reduction of pain with a decrease in mean scores of all three measures. In the control group, only PRS showed significant decrease. Our study results indicate that this treatment regimen not only reduces leg volume and capillary fragility, but also improves pain intensity in patients with lipedema.
Int J Low Extrem Wounds. 2014 Oct 17. pii: 1534734614554284. [Epub ahead of print] Lipedema: A Review of the Literature. Okhovat JP1, Alavi A2. PMID: 25326446
...The current literature suggests that lipedema appears to be a clinical entity thought to be related to both genetic factors and fat distribution. While distinct from lymphedema and obesity, there are some existing treatments such as complex decongestive physiotherapy, liposuction, and laser-assisted lipolysis. Management of lipedema is complex and distinct from lymphedema. The role of newer randomized controlled studies to further explore the management of this clinical entity remains promising.

Wednesday, July 1, 2015

Lipedema, Part 4: Possible Causes and Associated Conditions

You can read the story of this mother
and daughter with lipedema here.
We have been talking about Lipedema (also spelled Lipoedema, as to the left), sometimes known as "painful fat syndrome," as part of Lipedema Awareness Month.

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.

What Causes 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:
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.

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 mother looks to be in Stage 3, with orange-peel texture on her skin, large fat pads on the knees, and the classic bracelet of fat at the ankle.

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. 

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

Many women with lipedema develop telangiectasias, or spider 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):
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

Cellulitis infection with lipo-lymphedema;
notice the foot swelling from secondary lymphedema
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.

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:
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.
Blogs, Websites, and Facebook Pages from Those Dealing with Lipedema
Possible Causes of Lipedema

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.