Lipoedema, what to do? - dealing with the fat distribution disorder

 

How do I know if I have lipoedema?

In the early stage , lipoedema is often not yet visible. The first symptoms include leg pain that increases throughout the day. These pain symptoms appear to occur without any apparent reason.

A high sensitivity to touch and pressure develops. Many affected women describe a feeling of tightness in their legs. Elevating the limbs provides no relief.

In addition, even at this early stage of lipoedema, there is a feeling of exhaustion in the legs. These symptoms tend to worsen when standing or sitting. Pain caused by lipoedema can reach extreme intensity.

Low air pressure and warm temperatures also intensify the symptoms. For example, air travel would cause severe leg pain due to the changing air pressure. This pain is the first warning sign for recognising lipoedema.

Another sign of lipoedema is the excessive tendency to develop bruises and haematomas on the lower extremities. Because the disease affects the capillaries in the affected tissue, these tiny vessels burst even under minor force. As a result, relatively light knocks can cause extensive haematomas.

As the disease progresses,  fat deposits develop that increasingly affect the body's proportions. Depending on the distribution pattern of the lipoedema, the legs, buttocks or hips appear significantly thicker than other parts of the body. This is naturally particularly noticeable in women who were previously slim.

When excess weight is already present, these fat deposits are often not noticeable at first. The fat deposits also develop symmetrically on both sides of the body . This symmetry is one of the most important characteristics for recognising lipoedema.

The visible difference between lipoedema and obesity – the general increase in body fat – becomes clear from the distribution of fat deposits on the body. “Normal” weight gain generally affects all parts of the body.

Although some areas (for example, the buttocks, abdomen or hips) are more affected than others in this case as well, the increasing disproportion is very noticeable with lipoedema. In addition, orange-peel skin may develop, with small nodules that can be felt beneath the skin.

The hands and feet are generally not affected by pathological fat accumulation. Symptoms may occur in the arms themselves, although this is far from the case with every instance of lipoedema. If the arms are affected by the fat distribution disorder, the fat is distributed in the same symmetrical pattern as on the legs.

Fat deposits form that end at the ankles or wrists. In severe cases of lipoedema, overhangs of fatty tissue develop, hanging over the ankles like trouser legs. This is why they are also referred to as “riding breeches” or “pump trousers”.

Lipoedema can occur in three different fat distribution patterns :

• Thigh type: Fat deposits occur only on the hips and thighs. Colloquially, this is referred to as “riding breeches”.
• Lower-leg type: The lipoedema also extends to the lower legs. It is also referred to as “cuff trousers”.
• Ankle type: The most severe form of lipoedema, in which a collar-like overhang of fat develops around the ankles, resembling “pump trousers”.

Lipoedema tends to worsen. However, its progression can also come to a standstill - in some cases, excessive fat accumulation stops for reasons that are still unknown.

These phases can last for years before further deterioration occurs. In rare cases, the disease then even remains inactive for life. When lipoedema becomes active, flare-ups often occur, bringing drastic increases in fatty tissue.

In the case of lipoedema, neither regular exercise nor disciplined diets cause the fat deposits to recede. This is another clear indication that the fat distribution disorder is present. However, exercise and nutrition can indeed help slow and combat the fat distribution disorder.

What causes lipoedema?

Although the causes are still unclear, much suggests that hormonal dysfunction causes lipoedema. The onset of the disease during pregnancy, at the end of puberty or during menopause is an argument in favour of this.

These phases are each accompanied by major changes in hormone levels. In addition, lipedema often occurs several times within the same family, suggesting a genetic predisposition. Unfortunately, research has so far been unable to determine the actual causes of the abnormal fat deposits.

Lipedema is unknown in children - the disease occurs at the earliest toward the end of puberty . Men also practically never develop lipedema. Only one case is known in which lipedema was diagnosed in an otherwise healthy man from Taiwan.

Otherwise, the fatty tissue disorders typical of lipedema occur in men only in connection with serious illnesses that affect hormone levels (for example, as a result of liver cirrhosis).

Lipedema - the three stages

• Stage 1 lipedema: In the early stage of lipedema, the saddlebag shape is already beginning to emerge. The skin is still smooth, but shows clear signs of an orange-peel texture when pinched together. The deeper skin tissue - the subcutaneous tissue - feels thicker and softer than normal. In some cases, small hard nodules can already be felt beneath the skin.

 

• Stage 2 lipedema: The fat deposits in the tissue have progressed to the point that a clear saddlebag shape has developed. The discrepancy between the mass of the lower half of the body is now particularly apparent in women with a slim upper body. The skin's surface is also now marked by dimples and larger nodules. It is no longer described as having an orange-peel texture, but rather a “mattress-like” texture. Lipedema is now clearly recognizable as such.

 

• Stage 3 lipedema: In the third stage, the subcutaneous tissue begins to harden. So-called “saddlebags” - pronounced fat flaps - develop on the inner thighs and around the knees. The shape of the legs now corresponds to “pump pants,” with fat collars hanging down over the ankles. The disfiguring fat deposits cause areas of skin to rub against each other, resulting in painful chafing wounds. Inflammation can also develop here and spread into dangerous secondary diseases such as shingles. The change in body proportions also forces the legs into an X-shape, which in turn increases stress on the joints. Lymphedema may also develop during this stage.

The transition between the stages of lipedema is gradual. Individual symptoms may also occur in other stages. In particular, the perception of pain varies from patient to patient.

Lipedema in combination with lymphedema

Lymphedema resembles lipedema because it causes similar symptoms. However, here it is  disorders in the drainage of lymphatic fluid that cause a buildup of fluid - not fat. The resulting swellings also affect the backs of the hands and feet, but normally occur on only one side of the body. Lymphedema is also painless.

However, severe lipedema can promote the development of lymphedema. The fat deposits then restrict lymph flow, causing additional lymph to accumulate in the tissue. The combined occurrence of these conditions is called lipo-lymphedema .

What helps with lipedema?

Although lipedema is currently not considered curable, there is a glimmer of hope for affected women: the disease can be treated. The first hurdle is  timely diagnosis  - too often, early-stage lipedema is treated as obesity. However, most countermeasures have the best prospects of success in the early stage.

Treatment of the fat distribution disorder aims to counteract symptoms such as pain and the increase in fat deposits. It also seeks to prevent secondary conditions such as skin inflammation or the development of lymphedema.

Complex decongestive therapy (CDT)

The  complex decongestive therapy (CDT)  was originally developed to treat chronic lymphedema. The procedure has since been adapted to treat lipedema as well.

CPE is divided into two phases: an initial decongestion phase is followed by a maintenance phase to stabilize the results achieved. Below, we present the measures included in CPE.

Manual lymphatic drainage (MLD)

 Manual lymphatic drainage (MLD) is a special type of massage. MLD is performed very gently, with minimal pressure, and is intended to support the lymphatic vessels in removing fluid and proteins. The massage is generally performed from the head end towards the oedema.

With pure lipoedema, lymph fluid usually still flows sufficiently on its own - manual lymphatic drainage is used here primarily because of its pain-relieving effect .

The pressure pain caused by lipoedema can be alleviated through MLD. This makes it easier for affected women to wear compression stockings or compression bandages.

With lipoedema, compression stockings should be worn continuously from morning to evening

Compression therapy & compression stockings

 Compression therapy is a crucial factor in the treatment of lipoedema and lipo-lymphoedema. In the early stages of lipoedema, the consistent use of compression therapy can drastically slow the progression of the disease or even bring it to a halt.

For treatment to be successful, it is crucial that the patient wears her compression stockings all day continuously from morning to evening.

The compression effect consists in improved microcirculation of the blood into the deeper layers of the skin. The compression stocking puts pressure on the skin tissue, causing capillaries and cells to move closer together.

In this case, shorter pathways for blood flow lead to better cellular supply and facilitate the removal of waste products. At the same time, less fluid can seep into the tissue. If the lipoedema also affects the arms, appropriate long compression gloves can also be worn there.

Which compression stockings should be worn for lipoedema should be clarified medically if in doubt, as there are different types. Simple support stockings are unsuitable because they provide only mild support for the veins.

In the case of lipoedema, medical compression stockings are recommended, which are divided into four classes. Class I stockings exert the least pressure on the tissue, while class IV stockings exert the most.

 Compression bandaging is generally used only for lipo-lymphoedema. It helps drain retained oedema fluid and is used only as long as the oedema can be reduced. From that point onward, compression stockings are worn again to treat lipoedema.

Dynamic compression therapy

This relatively new procedure is an alternative to manual lymphatic drainage. 

With dynamic compression therapy, jacket or trouser cuffs are worn, which have numerous air chambers that can be inflated one after another, starting at the feet or wrists and moving upward.

Regularly releasing the air and inflating it again produces a very similar massage effect to MLD.

A major advantage of this method is that it can be used for self-treatment.

In some cases, users can completely forgo MLD and achieve pain relief and counteract fluid retention themselves with a home device.

Healthy diet and exercise with lipoedema

Unfortunately, it is not possible to cure lipoedema through dieting. However, a healthy diet and physical activity can counteract the formation of new fat deposits.

Since women with lipoedema also often struggle with “normal” excess weight, a healthy lifestyle is generally advisable alongside medical treatment of the fat distribution disorder.

Especially in the early stages of lipoedema, this can significantly slow the further progression of the disease.

What types of exercise are possible with lipoedema?

Low-impact endurance sports and strength exercises are suitable for burning calories and building active muscle mass, which promotes a higher basal metabolic rate. Even daily walks at an increased pace can be a start to doing something about the fat distribution disorder. Compression stockings should be worn during exercise.

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Swimming and water aerobics are recommended in any case, as water is an excellent medium for natural compression therapy. Exercising in water is gentle on the joints because buoyancy supports the body's weight.

Because water pressure is highest at the feet and decreases toward the surface, aqua gymnastics or water aerobics can effectively support venous blood flow and the drainage of oedema.

Water aerobics is one of the sports frequently recommended for patients with lipoedema

Which exercises you can do depends, for example, on your age, current fitness level, and the stage of your lipoedema. Discuss your exercise options with your doctor or therapist. 

Physical activity will primarily help you avoid additional excess weight and stop the lipoedema from worsening.

The fat deposits caused by lipoedema itself remain unaffected. The psychological benefits of physical activity should also not be overlooked. Improving physical performance, building muscle, and following a training plan gives you the feeling of accomplishing something - of making progress.

What is the healthiest diet for lipoedema?

The healthiest diet for lipoedema is one that provides the body with all the important nutrients while controlling calorie intake and avoiding unhealthy nutrients.

The important thing is to find a way of eating that you can maintain for life . Diets do not help against lipoedema and sooner or later they end. We recommend speaking with nutrition experts to find a balanced diet that takes your individual situation into account.

Lipoedema, what can you do? Here are some general tips for a balanced diet with lipoedema:

• Use healthy fats, such as those found in various nuts or seeds. Avoid margarine or butter whenever possible.

 

• Eat a low-salt diet. Salt binds water in the body - excess salt, in turn, is excreted in the urine, which may lead to a lack of fluids.

 

• In general, it is important to drink enough. An adult should usually consume at least two liters of water a day. You should avoid sugary drinks and alcohol if you have lipoedema.

 

• Eat little meat and cheese - you do not have to give them up completely, but you should prefer lean and low-calorie varieties.

 

• Vegetables are among the best things you can give your body. Most vegetables contain so few calories that you can eat your fill several times a day. Their fiber promotes digestion, and your blood sugar level also remains stable.

 

• Fruit is also healthy, but it can raise blood sugar levels. Enjoy it in moderation. Sweets, white bread, and other foods that rapidly raise blood sugar levels should be avoided.

A healthy and balanced diet is particularly important with lipedema

Liposuction - the operation to reduce fatty tissue

 Liposuction is not conventional liposuction, but a specialized procedure for the targeted removal of the pathological fat deposits associated with lipedema. During liposuction, the suction cannula is guided exclusively parallel to the lymphatic vessels to prevent injury to them.

The operation requires precise knowledge of the course of the lymphatic vessels and should only be performed by appropriately trained physicians.

Liposuction can enormously improve the situation of affected women. When performed successfully, the operation can:

• remove retained fluid and reduce pressure pain or even result in freedom from pain

 

• ensure that MLD is needed less frequently or can be discontinued and, under certain circumstances, even make it unnecessary to wear compression stockings for lipedema

 

• normalize the proportions of the affected body parts and thereby give the patient greater self-confidence

 

• reduce or remove existing fat lobes and deep folds where sore areas may develop

 

• remove fat deposits on the insides of the legs, preventing them from rubbing against each other while walking, which avoids skin irritation and normalizes the gait

 

• reduce the tendency toward bruising and hematomas

 

• prevent lipedema from developing into lipo-lymphedema

The principle of liposuction consists of the gentle and targeted removal of pathological fat deposits

Liposuction is not a cure-all for lipedema. It can greatly alleviate the symptoms, and sometimes even stop them - but it cannot cure lipedema. However, the patient's quality of life should improve significantly.

As with many chronic diseases, the psychological component should not be underestimated with lipedema either. Particularly patients who previously had pronounced symptoms report a greatly increased sense of well-being after liposuction - in the late stage of lipedema, the change resulting from the operation is most noticeable.

However, liposuction is most effective when it is performed as early as the first or early second stage of lipoedema. To maintain the success of the operation in the long term, the patient must demonstrate lifelong discipline. A healthy diet and physical activity are essential.

In many cases, wearing compression stockings to manage lipoedema must also be continued. However, in addition to improving body proportions, the reduction in pain sensitivity can above all improve quality of life.

Bear in mind that this is an operation that should be preceded by a thorough medical examination . It must be assessed on a case-by-case basis whether the procedure is appropriate or whether contraindications argue against it.

It is best to obtain several medical opinions before deciding on liposuction.

When should liposuction be discouraged?

Some patients approach liposuction with very high expectations. It should be noted that it is difficult to predict how successful the procedure will ultimately be.

The operation can alleviate lipoedema but cannot stop it. In addition to psychological factors, the main health reasons that could argue against liposuction must be carefully considered:

• Is the patient able to tolerate the operation well, which may require local anesthesia or, rarely, general anesthesia?

 

• Are there any allergies to the anesthetics used?

 

• Are there any diseases or damage affecting the heart, liver, kidneys, or lungs?

 

• Is the patient prone to cramps or thrombosis?

 

• Is the patient taking anticoagulant medication?

 

• Is there generalized inflammation of the fatty tissue? (panniculitis)

 

• Is the patient pregnant?

Some contraindications make a special liposuction method necessary. For example, if the patient has very loose skin or a very high body weight up to generalized obesity, only water-jet-assisted liposuction (WAL) under general anesthesia may be possible.

Psychotherapy - accepting the disease

The effects of lipoedema, ranging from pain to the loss of the body shape perceived as aesthetically pleasing, also have a considerable impact on the psyche. Affected women often suffer from a negative self-image, which can even lead to depression.

These are often accompanied by eating disorders , which in turn lead to a deterioration of the clinical picture.

It can therefore be very helpful to support lipoedema treatment with accompanying psychotherapy . Accepting the condition and learning to lead a fulfilling life despite it is an important goal.

Can lipoedema be stopped?

According to the current state of medical knowledge, lipoedema itself is not curable, as the causes of the condition have not been clarified. Although lipoedema itself cannot be stopped, the right treatment and lifestyle can slow down the symptoms and, in some cases, even stop them from progressing.

The earlier the fat distribution disorder is detected and treated, the better the chances of success.

What happens if lipoedema is not treated?

If lipoedema is not treated, there is a high probability that it will become increasingly worse with further flare-ups. The more pronounced the symptoms, the more difficult they may be to treat.

If fat deposits reach a critical point in stage three lipoedema, the affected skin, joints and, of course, mental health are increasingly impacted. The development of secondary conditions such as lipo-lymphoedema becomes more likely.

If the fat distribution disorder is treated correctly, it is possible to achieve a state in which the effects of lipoedema remain under control. This may require discipline and various lifestyle changes, but the effort is certainly worthwhile.

Lipoedema: what to do? Conclusion:

Lipoedema is a chronic condition that can cause considerable physical and emotional suffering. However, affected women are no longer helpless in the face of it, as lipoedema can be treated in various ways.

Early detection of the condition is crucial, as it is still too often dismissed as being overweight. If you believe you have early-stage lipoedema, see a doctor who will take your concerns seriously.

The destigmatization of this chronic fat distribution disorder is progressing and increasingly bringing patients out of isolation.

Alongside new treatment methods, fashion has also evolved considerably - the unavoidable compression stockings are now available in fashionable designs that allow for an attractive and confident appearance .

We wish all women with lipoedema the best possible treatment outcome and the confidence to live with their condition!