Lipedema: when fat cells get out of control

Are you putting on more and more weight on your legs, even though you exercise and pay attention to your food? Do you often have pain when you are touched, or swelling that gets worse and worse over the course of the day? One possibility that you may not have considered yet: a diagnosis of lipedema.

Let us begin in the classic way with a translation, because the term “lipedema” comes from Ancient Greek. “Lip” means fat, “edema” means swelling. You cannot translate it literally like that, though, because the swelling does not refer to “lip” (the fat) but to the water retention that very often occurs as lipedema progresses. This retained fluid causes the pain that arises when the area is touched, for example. In addition, lymphedema can develop, that is, visible and palpable collections of fluid in the interstitium (the space between the cells).

If you are thinking right now, “Huh, say that again, lipo-lymph-what? And why does it hurt then?”, do not worry… we will clear that up now, step by step. Let’s go.

Lipedema is usually defined as a disorder of fat distribution. “Badly distributed fat… ha, I have that too,” every second person is thinking now. But hold on: this does not mean the normal body fat that we can influence through exercise or food. Lipedema is not caused by obesity. Slim people can develop this fat metabolism disorder too.

The number of fat cells is fixed by the age of 20. (Except in the case of a very large weight gain, when a new batch is produced.) In principle it works like this: when we store fat in the body our fat cells fill up, and when we lose weight they empty out. The number always stays the same.

With lipedema things are a little different. The fat cells do not only fill up, they also change their structure. The tissue becomes, so to speak, “ill”. All of a sudden the fat cells multiply again instead of “just” filling up… and nobody calls “stop”.

The multiplication of fat cells in lipedema almost always happens symmetrically. If the left thigh forms new fat cells, the right thigh follows suit. At first glance that does not seem unusual. When we gain weight, the fat is distributed relatively evenly too. It becomes striking when someone gains a great deal very quickly and the volume in certain places seems to “explode”. Most often lipedema affects either only the lower part of the body (legs, hips, buttocks) or only the upper area (arms, neck, back where the bra sits). Hands, feet and trunk, by contrast, stay slim, which can lead to unusual proportions.

In addition, in lipedema the connective tissue in the layer beneath the skin (the subcutis) increases and forms small scars that can be felt as small round nodules. This process is called fibrosis.

In short: a chronic swelling in the tissue.

The blood capillaries in the layer beneath the skin become more permeable and fluid collects in the tissue, fluid that does not really belong there in these amounts. At the same time the lymphatic system (the transporter for this fluid) no longer works properly.

The lymphatic system is the body’s treatment plant and is responsible for immune defence and for draining the tissue. Every day 2 to 3 litres of fluid run through the body and carry pathogens and foreign particles out. In doing so it runs more or less parallel to the blood vessel system.

So an ever larger amount of water collects between the cell walls and the skin stretches in that place: secondary lymphedema develops. The difference from lipedema swelling: lymphedema mostly occurs on one side only and also affects the hands or feet.

The severity of lipedema is usually divided into 3 stages.

Stage 1

• Orange peel skin: a smooth skin surface with an evenly thickened layer beneath (not to be confused with cellulite)
• Saddlebags

Stage 2

• Uneven, mostly wave-like skin surface
• Nodular structures in the thickened layer beneath the skin

Stage 3

• Coarsely nodular skin surface with larger dents
• Pronounced increase in circumference with overhanging, coarsely deformed portions of tissue (formation of folds)

Lipedema occurs mainly in women. The symptoms mostly begin between the ages of 20 and 30. Hormonal changes such as puberty or a pregnancy are suspected as triggers. That would explain why some women also develop lipedema during or after menopause. In fact research has not yet agreed on exactly what the reasons for lipedema are. What is striking is that cases cluster within families. It is therefore believed that the predisposition to lipedema is inherited.

Men are rarely or not at all affected by this fat distribution disorder. When lipedema does occur in men, it is mostly in connection with other illnesses or treatments that affect the male hormone balance (such as prostate cancer). A natural occurrence without a pre-existing condition is so far not known in men.

Because of the disproportionate distribution of weight in lipedema, you may start to move differently from your natural gait. Over time this leads to misalignment of the joints, which causes premature joint wear.

The complaints are not always caused by lipedema. A second form of condition is very similar. Lipohypertrophy of the extremities looks almost exactly the same, but unlike lipedema it does not cause pain on pressure. It is also genetic and shows itself through increased fatty tissue on the thighs and upper arms. This cannot be reduced through diet or exercise, but it can at least be kept in check. If someone is overweight, it progresses further. In rare cases lipohypertrophy can also lead to lipedema.

We already know that fat cells can only be emptied, not broken down. Removing lipedema completely by natural means is therefore unfortunately not possible. There are, however, a number of treatment methods with which the symptoms can be improved and new fat deposits avoided. Here we present 3 therapy options. As a last step we will also talk about liposuction, the only option for reducing the number of fat cells.

Compression means pressure. This pressure is applied through garments that are made specially for this purpose. The idea is to squeeze the fluid out of the diseased fatty tissue and so relieve the pressure of the tightness.

For comparison: a sponge full of water that you pull a very tight sock onto. The water is pressed out of the sponge and drains away. On top of that, the sock keeps the sponge from soaking itself full of fluid again and expanding.

Exactly the same technique is applied to our fatty tissue by compression leggings, for example.

Here the lymphatic system is stimulated with a special massage technique. The therapist works with circular movements, stretching stimulus, intermittent pressure and suction. This increases the removal of fluid and the pressure on the tissue eases.

Here the tissue is compressed by a special cuff that is filled with air and so applies pressure. It is reminiscent of a blood pressure monitor, only very large. Both legs fit inside it, for instance. Putting the cuff on is not something you do at home either, but at a therapist’s practice. After that, air chambers lying one behind the other fill up one after another. It starts at the point furthest away from the heart, so the work goes towards the heart as in a relaxing massage. After a while the pressure eases off evenly and builds up again after an interval.

Liposuction is the only way to reduce the pathologically increased number of fat cells.

Advantages:

• Less fatty tissue = fewer places for fluid to be stored
• Many people report an improvement in sensitivity to pain
• The proportions are visually evened out

Disadvantages:

• An improvement in sensitivity to pain is not guaranteed
• The fat cells can be formed anew, so it is not a long term solution
• High cost of surgery

The cost of liposuction can lie between 2000€ and 10000€ and is rarely covered by health insurance. Only at stage 3 of lipedema has there been support from the German statutory health insurers since January 2020. Even here, though, there are exceptions again and again. If you want to be on the safe side: ask.

Areas that can be considered for liposuction in lipedema:

• Legs on the outside from the hip to the ankle
• Arms from the shoulder to the forearm
• Legs on the inside from the groin to the ankle

In addition to the medical therapies, a healthy body weight is the most effective method for tackling lipedema. The must haves when living with lipedema are therefore: movement and healthy food.

If you exercise regularly, you are not only building a more capable body. The movement fires up the lymphatic system, so that the retained water which causes the pressing pain is excreted. On top of that your weight is maintained or excess weight is reduced, the perfect basis for getting lipedema symptoms under control.

Movement is the must have with lipedema, in order to reduce water retention and build strength. Whether you go for a walk or take up a sport… do everything at your own pace and see what does you good. But do it. Because the principle is: whatever it is, the main thing is to move.

• Perfect are all sports that take place in water, because the buoyancy makes you feel lighter and more mobile, whether that is classic swimming or perhaps aqua zumba. The joints are also spared.
• Not a water baby? Then get on the bike or onto the machines at the gym.
• One sport that sounds difficult at first, but can still work in the early stages, is jogging or walking. Anyone who can already only lift their legs with pain is now thinking, “How is that supposed to work?” But running stimulates the skeletal muscles of the lower limbs and the deep trunk muscles. The additional muscle pressure supports the lymphatic system in draining the tissue. Inflammatory messengers are carried away and pain is eased. With compression garments this effect is amplified even further.

With lipedema, pain can arise not only because of water retention. Creeping inflammation can also irritate the nerves and lead to even stronger water retention.

A ketogenic diet inhibits the inflammatory processes that can arise with lipedema.

The decisive criteria for a ketogenic diet are:

• Very low carbohydrate eating
• Minimal insulin release
• Strongly increased fat burning
• The liver produces ketone bodies from fatty acids

Because fewer carbohydrates are taken in through food, less water is stored in the body as well. That means less swelling and therefore less pain too.

In the Foodpunk lipedema programme we also leave out dairy products, because in some people they can lead to inflammation and water retention in the body.

Last but not least, we have put together a list of questions with which you can test for yourself whether you may be suffering from lipedema. If you can answer many of them with “yes”, it is best to make an appointment with your lymphologist.

• Do you have a strikingly disproportionate distribution of fat between your upper and lower body?
• Are your hands and feet free of the swelling?
• Do you get bruises (haematomas) again and again without knowing where they come from?
• Do your legs feel heavy when you have to walk up several flights of stairs?
• Do your thighs or calves swell noticeably over the course of the day?
• Do you still have pain in your legs when you are lying quietly in bed in the evening?
• Did your complaints begin or increase during puberty, after pregnancy or during menopause?
• Do female relatives suffer from similar symptoms?
• Do you have pronounced cellulite on your legs?
• Do you often feel pain when you are touched?
• Do you fail to lose weight on your legs despite the right diet and regular exercise?
• Do you keep gaining weight (above all on the legs), even though you pay attention to your food?