Wednesday, July 29, 2015

Lipedema Treatment, Part 5b: Weight and Special Nutritional Approaches

Image from Lipoedema Australia Support Society (LASS)
We have been talking about Lipedema, sometimes known as "painful fat syndrome" or "big leg" syndrome. Now we are continuing the series to discuss 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. This can affect the efficient flow of lymph as the condition progresses.

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, since secondary lymphedema can develop in the later stages of lipedema.

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 Medicine Treatments 
  • "Weight Control" and Special Nutritional Approaches (trigger warning)
  • Tumescent Liposuction
  • Alternative Medicine Treatments 
In Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

Today, we are talking about the controversial topic of "Weight Control" and Special Nutritional Approaches for treating lipedema.

Caveats and Trigger Warning

Many larger people are ignorant of lipedema or have questions about it but avoid lipedema sites because of weight loss talk or body negativity. My aim is to create a lipedema resource that is more size-friendly in order to raise awareness of this condition. However, not everyone defines "size-friendly" in the same way.

After years of dieting and eating-disordered behaviors, some find any mention of diets, weight loss, or bariatric surgery triggering. Others simply don't find those choices compatible with body love or Health At Every Size®. Unfortunately, because "weight control" is such a common prescription for lipedema, treatment discussions have to have at least some discussion of those topics. Here's how I plan to address them.

Weight loss or "weight control" is often pushed for lipedema patients, so we will discuss the evidence for such recommendations. Although I personally oppose bariatric surgery, the reality is that many women with lipedema consider it or are pressured towards it, so the pros and cons of bariatric surgery for lipedema will also be discussed. Special nutritional diets are also often prescribed, so we will discuss whether these can be used to lessen the symptoms of lipedema. In addition, The Health At Every Size® paradigm will be discussed as an alternative to weight-centric approaches.

While many lipedema websites are biased towards weight loss or diet-like behaviors, my own bias is the opposite way ─ against dieting, weight loss surgery (WLS), and rigid nutritional protocols. Readers should know that my viewpoint will show in this post.

However, people always have the right to make their own healthcare decisions, so people who choose weight loss or WLS are absolutely welcome here. Please don't feel put down if you choose these options. But do understand that diet talk is very triggering to some and they deserve a safe space away from it. Please respect the mission of the blog and do not promote WLS or engage in diet talk or negativity here. There are plenty of other sites for discussing those choices; this is not one of them.

My goal is a "size-neutral" approach to Lipedema. I will not promote bariatric surgery, weight loss, or a particular nutritional approach, but I will give information about all the commonly-prescribed treatment options, including those I wouldn't personally choose. This is your choice, and you are trusted to be smart enough to research and pursue the treatment that seems right for YOU. Please extend compassion, empathy, and respect for the right to make individual health choices to others and monitor your comments accordingly.
Trigger Warning: Weight loss, weight control, weight loss surgery, and various nutritional approaches are discussed as possible treatments for lipedema.
Introduction

Weight bias and lipedema are tightly tied together in a dysfunctional relationship in the medical world. Even though lipedema as a condition has been known about for 75 years, weight bias or ignorance has blinded most physicians to its existence and keeps many women from diagnosis and treatment, especially in the United States.

Because many people with lipedema are quite heavy, lipedema is usually mistaken as "just" obesity. Many women tell the story of how their concerns were brushed off and they were told to just go and lose weight, even when they insisted that something else was going on:
  • I was always told to lose weight by GP's. A friend in England...had Lipoedema and she told me I had it. It took 8 years to get a medical diagnosis
  • First three attempts, I was smiled at patronizingly, not examined and given leaflets on dieting…I tried again with a different GP, who also refused to examine me and said, "Face facts, you're FAT. Stop wasting my time and yours and go to a gym"…I still have problems as when I explain to healthcare professionals in hospitals that I have lipoedema, they act as if I'm so far in denial that I'm 'fat', I've 'made up' a condition to explain it
  • I spent 16 years going from doctor to doctor in Eastern Idaho, trying to find out what was wrong with my legs. Some said lymphedema and some said I was just fat. After I got the diagnosis from the Mayo Clinic I tried explaining to my doctors about lipoedema but they weren't very interested; [since] there wasn't even a diagnosis code for it they couldn't accept it as a valid condition
Some progress has been made in getting more recognition for lipedema as a condition. In October 2013 a MeSH (Medical Subject Heading) term was created for lipedema so now it is more searchable on the National Library of Medicine. An ICD code for lipedema is currently under review. The medical societies of many European countries recognize lipedema as a real condition. The NHS from the U.K. has a free e-learning page about lipedema for providers here.

Even when doctors accept that lipedema is a real condition, they often still blame its severity on being fat or on "bad" habits. Yet lipedema is a disorder whose main symptom happens to be overgrowth of fat tissues. Obesity occurs as a result of lipedema, but it does not cause it. As one British organization notes:
Obesity frequently occurs as a result of this condition, and not the other way around. It is important to realise that you have not caused your Lipoedema by poor dietary issues or from being overweight.
Because it is so common to blame lipedema on lack of self-control, there is a long history of using weight management techniques to control it. These are not very effective, but many providers remain adamant that weight management must remain a central part of treating lipedema. Weight bias is alive and well, even among lipedema providers who ought to know better, and it influences the treatment advice many women are given.

The topics of weight loss, bariatric surgery, weight control, and special nutritional approaches are controversial ones within the lipedema community. Some women believe wholeheartedly in weight loss, some oppose it, and most fall somewhere in between. Most doctors admit that dieting is not effective for lipedemic fat ─ but then turn around and give patients strict dietary regimes for "weight control" or push bariatric surgery. Others strongly promote particular nutritional approaches ─ supposedly just to ease symptoms or prevent further weight gain ─ but with the judgmental language of diet doctors.

Let's look at the evidence for each of these choices a bit more closely, as well as how weight bias has influenced these recommendations.

Weight Loss for Lipedema

For many years, women with lipedema were told to just lose weight and their legs would normalize. What was the evidence for this recommendation? NOTHING. A 2013 study notes:
There have been no published trials reporting weight management in lipoedema.
NO trials. Zero, zip, nada, NOTHING. Doctors just assumed that weight loss would help lipedemic legs, but there is no proof that it does.

With no research on it, doctors describing the condition of lipedema relied on their own observations and the anecdotal reports of women who had lipedema. From the original studies on lipedema on, women uniformly told doctors that weight loss did not significantly reduce their leg size. This was consistent with what most doctors saw in their lipedema patients.

Consequently, most medical literature acknowledges that stringent diets produce little weight loss from the lower half of the body in people with lipedema, even though there is little proof one way or the other. One resource notes:
Because it is not a medical condition caused by over-eating and improper nutrition habits, diets will not [have] much of an effect.
Even so, weight loss is still a commonly-prescribed treatment, even from lipedema experts. A textbook by one of the pioneers in the lipedema field says:
In the combination form, lipedema-plus-obesity, it is essential that the [Complete Decongestive Therapy] be accompanied by a professionally supervised weight-reduction program.
Doctors who recommend weight loss for lipedema are hoping against hope that it might produce some limb reduction in the lower body or prevent the development of secondary lymphedema. Others simply don't believe that lipedemic women have "tried hard enough" or used the "right program" to lose weight.

Anorexic patient with lipedema
This flies in the face of the accumulated anecdotal experience of many lipedema sufferers. Many women have dieted for years but have noted minimal loss in their lower bodies. Many have worked incredibly hard with doctor-prescribed or commercial weight loss programs but experienced far less weight loss than would be expected under the circumstances. Some have even gained weight while on diet programs.

There are even cases of lipedema in women with anorexia, like the woman pictured. This woman has dieted herself into anorexia on top, but her legs are still fat.

Another woman shared her experience with anorexia and lipedema in a recent news report. She said, "I put myself on a super strict-caloric diet and you could see my rib cage, you could see my ribs, my face was gaunt, my hands were just sticks, but my legs and my arms were still big."

Yet still providers keep pushing weight loss in women with lipedema. They have been trained to see weight loss as the only "correct" response to a fat body and that this message cannot be eased up on at all.

Indeed, the 2013 study discussed above challenged the notion that weight cannot be lost on the lower body of lipedema patients. It triumphantly noted modest limb reduction in one patient with lipedema after 18 months of dieting; she lost about 22 lbs. and about 14% of total limb volume. The study concluded, "The case study presented in this article shows that, by addressing generalised obesity, leg size in the person with lipoedema can be reduced."

This kind of sweeping generalization is typical overstatement. 18 months in ONE patient is hardly proof. Many people see weight reductions from dieting on this timeline, only to see that weight return within another year or two after that. And a case report of ONE patient is far from conclusive that weight loss is helpful for lipedema.

But surely some women with lipedema lose weight successfully? Yes, occasional stories can be found online of restrictive dieting (without WLS) producing significant weight loss, including modest reduction in affected areas.

However, I've yet to see a story where weight loss normalized significantly lipedemic legs.

Here is a picture of a woman who lost over 100 lbs. and re-shaped her upper body through exercise, but who clearly still has significant lipedema in the legs. Her legs have probably had some volume reduction, but remain disproportionately larger despite strict diet and exercise.

And, as with most weight loss, weight loss in lipedemics usually does not last. Even those women with lipedema weight loss "success" often experience regains. So are a few anecdotal stories really proof that weight loss is the treatment of choice for lipedema?

Bottom line, there is little long-term, qualitative research on weight loss for lipedema. Doctors just assume it will help but have little real data to support that. Any recommendation for weight loss as treatment is not an evidence-based recommendation.

Again, anecdotal evidence suggests that weight loss may provide some short-term reduction in limb volume in some, but legs almost never reach "normal" proportions. Rarely does weight loss seem to provide long-term help; limb volume tends to return with time.

Dr. Karen Herbst, a leading lipedema researcher, says:
Lifestyle improvements should always be considered but are not the cause of lipedema. Lipedema SAT [Subcutaneous Adipose Tissue] is unaffected by caloric restriction alone.
Doctors who continue to recommend weight loss for lipedema are doing so mostly from weight bias, because that's what their medical training tells them to do with a fat body, and because they don't know what else to recommend. One woman with lipedema writes:
If you are struggling with your weight [because of lipedema] and you cannot lose and you've tried everything, don't let your doctor convince you that you aren't trying hard enough.
Lipedema is not about calories in and calories out, and weight loss is not a cure for lipedema. Calories are not irrelevant, but this is a disease of adipose overgrowth. That disease process means it's very unlikely that you can make your body look "normal" no matter how hard you try.

Even knowing that weight loss attempts are unlikely to "normalize" your body size and shape, can you still choose to pursue it? Of course you can, and many women with lipedema do. Everyone is the boss of their own body, and if this is the path you want, it's your right to pursue it. But it's important to be realistic about it. Even the most successful weight loss programs usually only produce about a 3-5% loss long-term for most of their participants. Some do lose more, but the majority only lose a small percentage of their total weight.

There's nothing wrong with an emphasis on healthy, reasonable eating, and exercise is very important for lipedema patients. How you eat can absolutely influence your body, but the reality with lipedema is that you only have so much control over it. Sometimes gains occur despite your best efforts, and sometimes you just don't lose much weight. Do your best and don't beat yourself up over it.

Don't let the misguided weight bias of doctors push you into harmful dieting practices or into feeling like a failure because you don't have a skinny body. Lipedema is NOT your fault. Let go of the guilt and find a new, rational way of dealing with your body.

Weight Loss Surgery for Lipedema

Image from lipedemasimplified.com
What about Weight Loss Surgery (WLS) for lipedema? Even if it doesn't normalize leg size, wouldn't losing lots of weight elsewhere benefit the "morbidly obese" lipedema patient?

Many doctors push WLS, especially gastric bypass, for women with severe lipedema. In addition, many women who don't know they have lipedema opt for WLS in a last-ditch attempt to lose weight when nothing else is working.

But before addressing WLS, the real question here is why are so many women with lipedema quite fat? The answer is that severe lipedema predisposes to large weight gains, even when the person is working hard against these gains.

Some resources call these sudden gains "inflammatory cascades." I prefer the term "flares" because we don't have any real proof yet that inflammation is the cause. Most Stage 3 lipedemic women have experienced "flares."

No one knows why some women are so prone to flares while others stay fairly stable or progress more slowly. Doctors like to believe that severe gains happen only in those patients with terrible eating habits or a binge eating disorder on top of the lipedema. But women's stories suggest the truth is more complicated.

Sometimes women gain very large amounts in relatively short periods of time, so much that it is difficult to believe that it could be due simply to overeating. One woman gained over 350 lbs. in the space of a little over two years. How could someone eat enough to gain that much weight in that amount of time? Even with a significant binge habit, it would be difficult. More likely, there's a lipedema flare and endocrine issues going on.

And in fact, the woman involved reports that she had the triple-whammy combination of hypothyroidism, PCOS, and lipedema. This resulted in a severe case of lipo-lymphedema.

[Personally, I gained about 100 lbs. over the period of about 3 years due to the same triple-whammy, despite desperate attempts to stop it with stringent diet and exercise.]

Some of this severe weight gain is fluids, other parts are fat. If fluids are not mobilized, much of the extra weight may become permanent. This can lead to many health problems. And the combination of extra weight and lipedema's predisposition to joint issues can lead to major mobility issues.

As a result, a number of women with severe lipedema resort to bariatric surgery, and some lipedema providers promote bariatric surgery for their "obese" lipedemic patients. Although experience shows that WLS will not give lipedema women a "normal-sized" lower body, they hope that there will be reduction in the size of affected areas and an easing of lymphedema. They also hope that by reducing their overall weight elsewhere, some of the strain will be taken off of their legs and health co-morbidities might be lessened.

And who could blame them for this hope? It seems logical on the surface, and certainly severe lipo-lymphedema is a tremendous physical burden with many health implications. Any relief of even part of this burden seems very enticing indeed.

Unfortunately, there is little data to support or refute whether bariatric surgery is a good choice for lipedema patients. Mostly we have only anecdotal stories, usually from those who have had success with this approach; those who don't rarely publicize their journeys, especially when they experience serious side effects and complications from the surgery. And even the ones who are successful at first often experience significant weight regain in a few years. The pressure not to speak up about negative outcomes and weight regain is very strong in the WLS community, so this side of the story is often not heard as loudly as the success side.

The anecdotal stories I've found suggest that WLS is somewhat helpful to some degree for some women, mostly those with very significant lipo-lymphedema who also get concurrent treatment for lymphedema. Weight and size in lipedemic areas is lost, but the body remains significantly disproportionate. Co-morbidities like diabetes tend to lessen, at least for a while, and mobility usually improves. These are significant advantages.

However, people must be realistic about the risks of this option. If not done carefully, operations of any kind can damage the lymph system further and result in serious complications. Furthermore, many people experience major nutritional deficits after malabsorptive procedures like gastric bypass, which in turn can cause their quality of life to deteriorate.

Even bariatric doctors admit that WLS does not make the lipedema go away. Many patients have significant weight regain after a few years as the lipedema reasserts itself, so it's hard to say how much long-term help such an approach really gives.

Many supersized women with significant lipo-lymphedema would likely say that such surgery was life-saving and that they would be much worse off had they never had the WLS. That could well be true. On the other hand, it's impossible to know this for sure since they can't go back and see an alternate timeline where the surgery wasn't done.

While it is completely understandable to want to ease some of the health or mobility issues of severe lipedema, that possible benefit must be considered against the real possibility of nutrient deficiencies, internal hernias, neurological issues, hospital readmissions, and other problems that can develop after bariatric surgery, some of which can be life-threatening.

Some feel the possible improvement in mobility and certain health conditions with WLS is well worth the risk of complications and weight regain. Others do not. Whatever choice they make, all deserve to be supported with love and respect.

"Weight Control" for Lipedema

 Even when doctors are realistic about the remote chance of weight loss fixing lipedema, many still strongly encourage dieting behaviors for "weight control" to hopefully prevent additional fat storage.

On the surface this seems reasonable, but when you dig a little deeper, there are problems in the assumptions most providers make about lipedema patients, in how this message is brought to patients, and in how lipedema patients are blamed if their lipedema gets worse.

Negative Assumptions About Habits

Obese women with lipedema are widely assumed to have poor eating habits and are repeatedly told that at least some of their fatness is caused by factors other than lipedema. One group says:
When morbid obesity (BMI>40 kg/m3 ) co-exists with lipoedema, lifestyle and psychological factors have contributed to the adiposity...If nothing changes in terms of the lifestyle choices of women with lipoedema, there will be no change in her condition either.
This sweeping conclusion (citing no evidence, note) speaks to the bias of the providers involved. They believe that a little bit of obesity could just be the lipedema, but if there's a lot of obesity, why then it MUST be because the person overeats and has psychological problems ─ it couldn't possibly be a more severe presentation of lipedema.

A 2008 Paper from a Symposium on lipedema by experts in the field had similar speculations:
It remains unclear whether this increased prevalence of high BMI is part of the disease process, or, is it because the patients are frustrated that despite their diets they cannot reduce the size of their legs, and so they eat even more and gain weight on the trunk as well? 
A lymphedema treatment clinic that also treats lipedema patients has a similar assumption:
As the majority of patients has already unsuccessfully tried all kinds of diets and weight loss treatments since puberty, in order to change the shape of their legs, they usually end up with a carelessness towards food intake and thus a significant overweight.
Augh! Among too many lipedema treatment providers, there are a lot of assumptions about "bad" habits that need to be fixed. While it's true that some fat people do have "bad" habits, many do NOT. Others only develop "bad" habits in response to years of deprivation from dieting.

The truth is that fat people are not all alike. Some have habits that predispose to weight gain, but many do not.

It's time for health professionals to take a more nuanced approach to fat patients, one that individualizes care based on circumstances and history rather than making broad assumptions about a person's habits based only on size, and one which expects reasonable habits rather than unrealistic ones. 

Triggering Language and Advice

It's reasonable to encourage healthy eating and regular exercise in hopes of avoiding additional fat storage, but the language used by some providers goes far beyond this. Sometimes it is stringent and fear-mongering. Often it gives conflicting messages.

For example, a 2012 paper on lipedema notes that low-calorie diets rarely help and that many lipedema patients have a long history of dieting and even development of eating-disordered behaviors ─ then turns around and tells doctors to give dietary counseling in order to prevent further weight gain:
Lipedema is frequently misdiagnosed as obesity resulting in disturbed eating behaviour such as anorexia...Lipedema, unlike obesity, hardly ever responds to low-calorie diet. Dietary counselling is advisable as a preventive measure against further weight gain. Medical history of most patients shows that the majority has a history of dieting and exercising without any considerable benefit on the contours and shape of affected limbs.
What is the dietary counseling going to be if patients already have a history of dieting and even disturbed eating behavior? How is more dietary counseling going to help? Might it not just make things worse? Why can't they recognize that it is this very dietary counseling that pushes some women into anorexia and disordered eating behaviors?

Experts too often recommend weight control measures that are suspiciously similar to stringent diets with low calories, elimination of entire food groups, and frequent weighing. This, along with scolding for weight gain, can be very traumatizing for some women.

Blame the Victim

Even lipedema doctors that don't push weight loss often promote rigidly restrictive eating plans. They seem to think that if lipedemic women don't diet for weight loss anymore that they will show no restraint and gain hugely. One document (my emphasis) says:
Further fat deposition must be prevented. Weight control is critical.
It's understandable to counsel patients not to add extra fat to the lipedemic fat already present. But far too many clinicians seem to assume that any further lipedemic fat gain must be coming from "bad" habits rather than as a result of the lipedema itself.

That's the most troubling part of these "rigorous weight control" messages. They blame the victim rather than the disease if lipedema gets worse.

Some care providers take it one step further. They tell women that lipedema can be kept from worsening if they are only careful enough with weight control and healthy lifestyle. In other words, if it does get worse, the implication is that it's the woman's fault.

This implication is widespread among lipedema providers. One leading lipedema advocate states:
It may be possible to limit the effects of Lipedema, through careful weight management, if diagnosed early enough.
The Wikipedia article on lipedema states:
If not kept in check through a healthy lifestyle, lipo-lymphedema can worsen, and patients will become progressively less mobile.
Another doctor states:
An unhealthy diet will cause the fat deposits to enlarge. A heart-healthy diet is always advised, and in the early stages of the disease, may help retard its growth.
But what evidence do they have for making these statements? None. There are NO studies that suggest that stringent weight control behavior prevents lipedema flares.

Again, doctors just assume that it will. Yet many women with lipedema who are extremely careful with diet and exercise still experience sudden unexplained weight gains. The Fat Disorders Research Society acknowledges this, stating:
Even with strict diet and exercise regimens the disease may progress and further treatments may be necessary.
Since hormonal changes or stress seem to be the main trigger of flares, it is dubious that strict weight control alone would prevent its worsening. It's also likely that endocrine issues are involved in lipedema. So why is it only ever about the patient's habits, rather than acknowledging that other factors may also be involved? Far too many providers still assume the problem is originating from the patient's behavior rather than the nature of the disorder itself.

Summary

The best argument for "weight control" is that it might help prevent additional weight gain on the rest of the body, which would help reduce stress on joints and might prevent or lessen some co-morbidities. That indeed would be an advantage.

On the other hand, weight loss research shows chronic "restrained eaters" have a strong tendency towards gaining weight, so weight control attempts could actually backfire. One lipedema expert writes:
A metabolism that is accustomed to a low-calorie diet, as well as the inability to exercise sufficiently because of the joint pain, leads to a cycle of gaining weight and worsening the situation for the joints.
This is the typical story of most women with lipedema. They reduce calories and eliminate "bad" food groups, then yo-yo up and down the scale repeatedly. Most regain the weight, many end up heavier than they began, and some develop eating-disordered behaviors and body image issues from years of dieting.

It is distressing, then, that even from lipedema experts, they still get relentless messages about the importance of "rigorous weight control," automatic negative assumptions about their habits, and implicit blame if their lipedema worsens.

Certainly, lipedema patients have responsibility for their own habits and shouldn't increase their weight through carelessness. However, careful attention to diet and exercise doesn't mean that flares and sudden weight gain won't occur.

Lipedema doctors need to watch the negative assumptions they often make about the habits of obese patients, avoid triggering language when talking about nutrition and exercise, and avoid blaming women without knowing the full story.

It's better to ask questions to discern an individual's habits, present multiple options based on those habits, and find the flexibility to work with patients instead of against them. Empower women, don't degrade or shame them. Care providers need to move beyond old weight-biased models of care and find new approaches.

Special Nutritional Approaches

A weight loss prescription for lipedema is not the same as using a special nutritional approach to alleviate physical symptoms.

For example, many women with Polycystic Ovarian Syndrome (PCOS) moderate their carb intake to help treat the insulin resistance common to PCOS. Some do it in hopes of losing weight, but many do it simply to lessen symptoms. Many with PCOS have also found that their symptoms are much milder when they are gluten-free. 

Similarly, some people with lipedema feel that certain nutritional approaches help reduce lipedema symptoms, or at least keep them from getting worse. Commonly-suggested approaches include anti-inflammatory, low-carb/paleo, or gluten-free diets.

 However, it's important to note that NONE of these have actually been tested with lipedema patients in clinical trials. 

You can find many anecdotal reports of people who say they were helped by these nutritional approaches and it's important to take these accounts seriously. However, it can be hard to separate weight loss rhetoric from legitimate nutritional concerns in these accounts, and of course, most are very short-term. When you look at the story of someone who claims weight loss or great improvement with a particular nutritional approach, ask yourself, "How long have they been doing this, and how long has it been maintained?" The success of their story might be considerably different 3-4 years out. 

Also watch carefully for hidden food neuroses in these tales of "cures." One site states:
Wheat and sugar are the enemy. 
Broad statements like this are problematic. There well may be truth in the idea that certain foods are more difficult for people with lipedema, and some may indeed find help in eliminating certain types of food. However, it's SO easy to sucked into a diet mentality that makes certain foods the culprit for every evil and that eliminates large groups of food without any proof that this is helpful.

This is the Just World hypothesis in action, where bad things only happen to those who are doing something "wrong." It's Magical Thinking to believe that if we just eliminate Food X or Y, all our health issues will disappear. Eliminating a particular food group can give people a sense of control over their disease and their future, but it's a slippery slope from there into food neuroses and blaming people for their diseases.

This is territory that must be walked very carefully, if at all. 

RAD - Low Inflammation 

The biggest trend in nutritional circles lately has been so-called low-inflammation diets. EVERYONE I know right now seems to be an anti-inflammation diet, for every reason under the sun. The sheer trendiness alone of this recommendation suggests caution.

On the other hand, if inflammation really is part of the cause of lipedema, then it makes sense that cutting down on "inflammatory" foods might be helpful. As a result, many lipedema sites strongly promote a "RAD" low-inflammation diet. They contend that wheat/gluten and sugar are the two biggest culprits in increasing inflammation, thus making the lipedema worse. Some also feel that dairy, soy, and possibly legumes are big culprits.

According to one doctor who specializes in treating lipedema, the following points are the "essentials" of the RAD diet:
Lower consumption of pasteurized dairy products, animal protein and fats, simple sugars and carbohydrates (low glycemic), salt and wheat or processed flour products, while enriching the diet with organic fruits, vegetables, whole grains and healthy proteins. 
Avoid foods that contain lots of chemicals such as artificial preservatives, flavors, fake sweeteners like aspartame, colors and stabilizers which includes most prepared, packaged and fast foods. A lot of packaged foods have advanced glycation end products or AGEs that can cause damage in the body and increase the risk for diabetes and alzheimers. Cooked foods also have AGEs so raw foodists also support lowering your AGE consumption. 
1. Lower fat consumption as fats are absorbed directly into the lymphatics.
2. Eat low glycemic index foods to lower insulin levels - insulin makes fat grow.
3. Eat lots of fresh vegetables that have enzymes that are absorbed into the lymphatics and in essence "roto-rooter" out the stagnant protein. You can add enzymes with advice from your healthcare provider.
4. Lower your salt intake if you are able so you retain less water/fluid.
5. Each time we eat we generate inflammation as the lymph system surrounds the gut. Rest the gut by taking a day off and eating liquid type foods such as soups, stews (without meat or at least with pulled meats), smoothies, protein shakes, applesauce, juiced vegetables and fruits.
Many people on the "low-inflammation" diet bandwagon say that they do better when they take gluten (and often all grains) out of the diet completely. Some also eliminate certain fruits and allow only small portions of nuts. Everybody has a slightly different version but these are the basics most commonly seen.

I know of NO studies on whether an anti-inflammatory diet helps lipedema symptoms or not. There are plenty of anecdotal stories of lipedema women who say they have much less serious symptoms and progression when on a RAD diet, but as always one has to remember that anecdotal stories are not proof. This needs to be studied. 

Low-Carb/Paleo

Low-carb, low-glycemic, or "paleo" diets are another popular recommendation on lipedema self-help sites. These lower the intake of carbohydrate foods, including grains, fruits, and higher-carb vegetables. Some promote moderate carb intake, while others are more hard-core and seek to nearly eliminate carbs.

Since there is probably a fair amount of crossover between PCOS and lipedema, it's quite possible that lowering carbs might be helpful. If there is an underlying problem with utilizing the body's insulin, and since high insulin levels tend to promote fat storage, then it makes sense to lower your intake of foods that spike insulin levels.

Some people find that they do best taking all grains out of their diet completely, while others do fine with just eliminating gluten and/or one or two other grains that tend to trigger strong insulin reactions (corn or rice are common culprits for many people).

Hard-core ketogenic paleo/low-carb diets often are difficult to follow long-term. Many people do quite well on them at first but report "crashing" on them at some point. Others do fine on them. If you consider trying one of these, it may be helpful to moderate them a bit. Find the combination that works for you. 

"Clean" Eating

It's very trendy right now for people to discuss "clean" eating or eating "real" foods. However, these terms are problematic. They are emotionally-loaded and stigmatizing. They put all kinds of arbitrary labels out there, promoting too much guilt about food.

Foods aren't inherently "good" or "bad," "real" or "unreal;" some are better for your health than others but all have some value. This kind of judgmental terminology is often adopted by people with eating disorders. Food moralizing is a dangerous slippery slope.

In the context of lipedema, if "clean" eating means eliminating artificial chemicals and additives, then that may be a reasonable goal for someone with lipedema. Cutting down or eliminating processed foods full of additives and preservatives seems unlikely to be harmful and seems likely to be beneficial.

Since lipedema flares are thought to be triggered by estrogen, it seems logical that eliminating possible outside sources of estrogen might be helpful. Therefore, many people with lipedema avoid plastic containers, eat only meat that has been raised organically (no hormones, grass-fed instead of grain-fed), etc.

As long as it's not taken to an extreme, more natural "whole" foods are probably always going to be a good idea and I strongly support people eating that way. But be careful about too much food moralizing; that way lies eating disorders. 

Summary

It's certainly possible that these special dietary approaches might bring positive effects for some, but pursuing these for a weight control agenda is usually not very successful.

Personally, I do believe that it is helpful to your health to eat more whole foods, cut down on additives, emphasize hormone-free and grass-fed meats, and consume more fruits and vegetables. I believe that many people with PCOS and lipedema do lessen their symptoms somewhat if they cut down on carbs. I know some who swear that going gluten-free really changed their health so I take that possibility seriously too. I'm not putting down the idea that nutrition may be one way to help combat lipedema, nor am I telling people to be careless in their habits.

But I also see an awful lot of Food Moralism and Magical Thinking in these nutritional approaches, and the language used in some of them is way too judgmental. Be very careful about the slippery slope between these and eating disorders.

I'd also point out again that there is NO PROOF that any of these nutritional approaches are helpful to women with lipedema. No one has even done any research to see if they do. Be very careful when reading extravagant claims telling you how you "must" eat for lipedema without any actual data to back up their claims.

If you consider using one of these approaches, use it to see if it affects your symptoms, not as a way to make you skinny, and do it moderately, not in extremes. Experiment and see it if it helps, but use common sense.

Health At Every Size®

While some women with lipedema still search for the dietary Holy Grail, others have chosen to disengage from dieting and weight management altogether. Some choose a Health At Every Size® approach, focusing on health behaviors rather than a number on a scale.

Lipedema doctors should understand that many women with long histories of failed dieting have sworn off even the oft-recommended 5-10% weight loss. They feel that even small weight-loss attempts are like playing Russian Roulette with their health; their past experience suggest that even small losses are likely to result in weight gain in the long run.

The choice to opt out of modest weight loss goals or rigid weight control attempts is very threatening to some in the medical community. Many consider this being in a state of denial about obesity, and they believe it is their job to break down this denial and MAKE fat people accept weight control measures like weight loss drugs or bariatric surgery.

There is increasing pressure on primary care providers to be more aggressive in weight control interventions. Some even want to deny healthcare to patients until they lose weight. One lipedema/lymphedema program requires patients to 'contract' for continued care "by exhibiting positive behaviors regarding weight loss, attendance at bariatric support groups, Weight Watchers®, or other beneficial practices." In other words, toe the line on weight control or you won't receive care anymore.

This is a violation of every patient's right to patient autonomy. Patients should ALWAYS have the right to decline treatments they do not want without being punished for this choice. That includes being denied care or access to other treatments. Lipedema care providers must recognize that lipedema patients are within their rights to decline weight loss/control treatment without being harassed about it, PERIOD.

Many lipedema providers falsely assume that if a patient adopts a Health At Every Size® approach, this means they have "given up," will eat uncontrollably, and never exercise. But that is not what HAES® promotes at all. The Association for Health and Size Diversity defines the principles of HAES this way:
  • Accepting and respecting the diversity of body shapes and sizes
  • Recognizing that health and well-being are multi-dimensional and that they include physical, social, spiritual, occupational, emotional, and intellectual aspects
  • Promoting all aspects of health and well-being for people of all sizes
  • Promoting eating in a manner which balances individual nutritional needs, hunger, satiety, appetite, and pleasure
  • Promoting individually appropriate, enjoyable, life-enhancing physical activity, rather than exercise that is focused on a goal of weight loss
The HAES® approach promotes the healthy lifestyle component of lipedema "weight control," but without the rigid rules, triggering language, and judgment so common to weight control approaches. It emphasizes body love and overall health over the number on a scale. Management decisions are made based on lab results and a person's overall health and goals, not scale numbers.

You can follow HAES® and still seek to eat more whole foods, lower carbs, and fewer processed foods. A HAES® approach would also promote regular exercise, but in a way that was sustainable and life-enhancing, not extreme. The aim is to improving health and feel better, not to lose weight.

HAES is not "giving up" but rather re-focusing health efforts in a more productive and life-enhancing way. You can read more about the myths and misconceptions people have about HAES® here.

There is no research on a HAES® approach in lipedema patients, just as there is no research on the efficacy of weight loss or weight "control" approaches with lipedema. However, general research on HAES® shows better longer-term health improvements with HAES® than with a weight-loss approach.

There is growing support in the medical community for emphasizing weight stability and weight-inclusive models over weight-loss-at-any-cost approaches. Even the authors of one of the pro-weight control studies above admit that "weight stabilisation is a positive outcome."

For those who want to pursue weight loss or bariatric surgery, of course you have the right to do so. However, those who want to opt out of "weight control" or to pursue a Health At Every Size® approach also have every right to do so, yet some receive harassment or refusal of care for doing so. More lipedema providers and organizations need to recognize that patients have the right to refuse weight treatment. Indeed, for those with a history of eating-disordered behaviors, it may be the only sane option. 

Summary of Weight/Nutritional Treatments

In my opinion, a healthy lifestyle with reasonable eating and exercise practices is a common-sense recommendation by providers, but recommendations for dieting, bariatric surgery, or restrictive nutrition should be viewed with caution.

However, as always, the choice remains with each person. Some women with lipedema will want to pursue weight loss or bariatric surgery, some will simply try to keep their weight stable, some will try various nutritional approaches, and some will follow Health At Every Size® principles.

Because of the weight bias pervasive in the field, patients need a strong mental filter when perusing lipedema literature. Frankly, there's a lot of nonsense from some researchers about people with lipedema "overeating to console themselves" and a lot of patronizing pseudo-sympathy.

Sadly, many lipedema patients internalize this weight stigma. They beat themselves up for not being able to lose weight, they resort to ever-increasingly restrictive diets, they may develop disordered eating patterns from years of dieting and beat themselves up even more.

After spending most of their lives in this mind-set, it can be difficult giving up the hard-core focus on dieting and weight loss. This can lead to some psychological distress. One lipedema support website notes:
Lipedema people often have difficulty moving beyond the first stages of recovery because we continue to be fixated on changing our bodies in order to fit in with the rest of the world. This has been our goal every waking moment since we were first understood that our bodies do not fit the accepted cultural norm. 
...People with lipedema are told our unacceptable appearance is our fault. We have been told all of our lives to fix ourselves so we can fit in with healthy, wholesome, disciplined people or to accept the bullying and name-calling we have earned "one Twinkie at a time."
Lipedema people have spent so much of their lives trying to make themselves physically acceptable with fad diets, exercise equipment, surgeries to reshape us etc, that we cannot stop a lifetime of compulsively trying to change our body shape even after we are told that exercise and diet will not help us. We can't just stop overachieving for the prize "of blending in" especially because one group of professionals tells us there is no cure for lipedema, another professional group promotes surgeries, and still other groups, including psychologists and psychiatrists, haven't even heard of lipedema, and still want to treat us as food addicts.

...Over the last decade, many lipedema forums, blogs, and self-help groups have addressed lipedema in ways that give us hope. We have learned much and we have created a community of love and support that engages our bodies and spirits. However, the one thing we have not accomplished is healing the shattered psyche of those of us who have been so deeply wounded by society, so estranged and humiliated, that we can't stop the addictive and compulsive survival tactics we unconsciously use in order to be accepted. We can't give up the corporate illusion that we can have normal bodies.
One of the sad facts of lipedema is that we probably will never have a body that looks "normal." Even after bariatric surgery, our bodies will likely still have more fat than average and will remain disproportionate because this is a disease of tissue overgrowth.

We have to find a way to make peace with our bodies so that we can live happy, fulfilled lives whether or not our bodies ever look "normal." Giving up the body hate and finding body love (or at least what I call "body detente") is the path to happier lives.

Lipedema care providers need to give up the single-minded focus on weight because it is keeping them from focusing on the REAL issues of lipedema. As one person with severe lipo-lymphedema writes:
The diet industrial complex works against those of us with lipedema...to be frank the profit motives are diverting real research in too many areas. I spent 17 years after my huge weight gain in extreme pain and suffering, given false promises of weight loss, and this almost cost me my life due to infections. The diet industry almost led to me dying, as it told me to suppress calories to 'save my life' with answers that simply did not work. Lippys need people willing to work outside the diet industry paradigms and its lies for the betterment of our lives...Lipedema, to be treated in the best way, needs set free from the diet industrial complex. We need thinkers who will think outside the box in the best way to help us, to realize the true endocrine and other issues that lie behind lipedema.
Amen to that. Lipedema, as a condition, has been known about for 75 years. Why is it still so hard to get diagnosed? Why don't we have more research on it? Why haven't we made more progress in treating it? Why aren't we doing more to learn about the true underlying causes of lipedema, particularly endocrine issues?

I say it's partly because of the underlying weight bias of the medical world, which wants to see lipedema mainly as a weight issue, and the tremendous profit motives of the diet industrial complex, which only wants to profit from us. Until the medical world gets out of bed with the diet industrial complex, progress on lipedema will remain slow.

It is my strong belief that until we can divorce lipedema from the weight loss industry and eliminate the insidious weight stigma taught in medical education, we won't make much progress towards curing lipedema, let alone finding effective treatments for it.

In the meantime, people with lipedema have to blaze their own trails in finding what works for them. 


References and Resources

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.
Websites About Those Dealing with Specific Lipedema Treatments
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...

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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.
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