Lipedema symptoms
What is lipedema and what is it not?
Lipedema is a symmetrical increase in subcutaneous fatty tissue in the extremities, primarily in the legs and occasionally in the arms, which is always accompanied by symptoms. The hands and feet are always spared from this change.
The increased fatty tissue often leads to a disproportion between a slim upper body and a wide lower body—but this is not always the case. There are also lipedema patients with harmonious body proportions.
According to current research, lipedema does not occur on the abdomen, chest, torso, face, or neck.
Lipedema is always accompanied by symptoms, but these can vary from person to person, which often makes it difficult for doctors to diagnose. In most cases, there is spontaneous pain in the affected limb or pain when touched, e.g., by a partner. Even children or pets sitting on the lap can cause discomfort. Occasionally, there is only a feeling of heaviness in the affected limb.
The cause of the symptoms is still completely unclear at this point in time; there may be an inflammatory reaction in the affected subcutaneous fatty tissue. An increase in dead fat cells is being discussed as a possible trigger for this inflammation.
This definition of lipedema implies that increased fatty tissue without symptoms—even with persistent exercise and diet—is not lipedema. This condition of increased fatty tissue without symptoms is referred to as "lipohypertrophy."
Lipohypertrophy is not considered a medical condition unless accompanied by obesity and therefore does not require treatment from a medical perspective.
To date, there is no scientific evidence that lipedema is a progressive—i.e., unstoppable—disease. Nevertheless, this is still stated in the first German guideline on lipedema from 2015. This aspect in particular is often picked up on social media, causing anxiety among an unsettled readership.
In any case, the term "lipedema" was an unfortunate choice by Allen and Hines, who first described the condition, as the word "edema" always refers to swelling of tissue due to water retention.
However, despite what is often claimed, lipedema does not involve water retention in the tissue, which clearly distinguishes it from other conditions such as lymphedema.
In lymphedema, tissue fluid (lymph) accumulates in the subcutaneous fatty tissue, causing the affected limb to swell.
However, lipedema can still cause water retention in certain cases, namely when it is accompanied by significant excess weight, as obesity can lead to lymphedema.
Experts have therefore been calling for a name change for some time, because there is actually no edema in lipedema. The preferred term here is lipohypertrophy dolorosa (painful increase in fatty tissue).
However, the term "lipedema" has already become established in the general public, which will make an actual name change difficult.
What are the symptoms of lipedema?
Lipedema often changes a person's physical appearance. Many patients with lipedema have a slim upper body and a wider lower body with increased fatty tissue on the hips and legs. In some cases, there is a difference of two dress sizes.
However, not every woman with similar body proportions has lipedema, even though this reverse conclusion is often propagated in the media.
Lipedema also occurs in slim women who, for example, only have increased fatty tissue in the knee joint area, which causes them pain. However, their body silhouette is still completely harmonious.
Since the pain associated with lipedema is uncharacteristic and the symptoms sometimes consist only of a feeling of heaviness in the legs, other diseases must also be included in the differential diagnosis. For example, varicose veins or changes in the lumbar spine that radiate to the legs can cause similar symptoms.
The skin may appear completely normal and smooth (stage I lipedema). However, it may also appear wavy, as with cellulite (stage II lipedema), or as overhanging fat flaps (known as dewlaps in stage III). And here, too, the reverse does not apply, i.e., the appearance of the skin does not necessarily indicate the presence of lipedema.
There are a number of other symptoms that are often interpreted as indications of lipedema but often have nothing to do with the condition. These include:
- Despite exercise and dietary changes, it is not possible to lose fat tissue.
- The fatty tissue under the skin is coarse and lumpy.
- There is a feeling of coldness on the skin.
- Rapid and frequent occurrence of bruises without any apparent cause.
Causes of lipedema
The causes of lipedema are still completely unclear and are the subject of current lipedema research.
Since lipedema almost exclusively affects women (although there are also a very small number of men affected), a hormonal trigger is suspected, particularly during puberty, pregnancy, or the onset of menopause.
However, a genetic predisposition passed down through the female line is also suspected. It is also possible that certain dietary habits are simply passed down from generation to generation.
It is striking that lipedema often occurs in conjunction with obesity (BMI > 30). Many affected women began dieting at a young age under the influence of certain beauty ideals and embarked on the painful path of the well-known yo-yo effect.
How does a doctor diagnose lipedema, and is there a self-test for lipedema?
The most important indications of lipedema are found in the patient's medical history (anamnesis) and the symptoms described by the patient, as well as the findings of the physical examination (palpation).
Unfortunately, there are no specific laboratory parameters or abnormalities in ultrasound or magnetic resonance imaging (MRI) that can be used to diagnose lipedema.
However, since lipedema is always accompanied by symptoms, palpating the affected areas of the body and performing a pinch test can provide indications of the presence of lipedema. In this test, the doctor pinches the subcutaneous fatty tissue below the inside of both knee joints or above the elbow on the underside of the arms. If this causes pain, lipedema may be present. You can also perform this test yourself.
You may also have lipedema if you can answer "yes" to any of the following questions:
- The fatty tissue under my skin on my legs or arms feels painful.
- When my partner touches my legs or arms, or when children or pets sit on my lap, it feels uncomfortable.
If you can answer yes to any of these questions, I recommend consulting your family doctor and/or a phlebologist (vein specialist).
A phlebologist deals with the diagnosis and treatment of lipedema and can also use an ultrasound examination to rule out other causes of your symptoms (e.g., vascular diseases of the legs such as varicose veins).
Treatment options for lipedema
There are both conservative and surgical treatment options for lipedema.
Conservative treatment consists of consistently wearing compression garments during the day (if this helps to alleviate symptoms) and manual lymphatic drainage, as this can also relieve symptoms.
Even though pure lipedema does not involve excess water in the affected fatty tissue, which could be removed by manual massage, lymphatic drainage still has a pain-relieving effect for many sufferers.
It is also important to get enough exercise and optimize your eating habits—ideally under the professional guidance of a nutrition therapist.
The surgical treatment consists of suctioning out the excess subcutaneous fat tissue in the affected areas (known as liposuction). Liposuction is currently the most commonly performed cosmetic procedure worldwide and has a very low complication rate.
You can find more information about both forms of therapy on the corresponding subpage.
What are my next steps?
If you suspect that you may be suffering from lipedema, I recommend that you consult your family doctor or a vascular specialist (phlebologist, vascular surgeon, angiologist) or lymphologist.
The doctor will first conduct a detailed medical history interview with you and then perform a physical examination and, if necessary, an ultrasound of your leg vessels to rule out other diseases.
If you have lipedema, further therapeutic steps can be planned in a joint consultation.
Background information on lipedema
In 1940, Dr. E. Hines and Dr. E. Allen, two physicians at the renowned Mayo Clinic in the USA, described for the first time a clinical picture that they had observed exclusively in women. They noticed a symmetrical increase in fatty tissue on both legs, which led to discomfort in the affected extremities. Obesity may also have been present, but was not necessarily the case.
Over many decades, this condition was forgotten, and it was not until the beginning of the new millennium that it returned to the public eye—thanks in part to the beauty ideals propagated on Facebook, Instagram, and other social media platforms.
As a result, more and more women are now wondering whether they might be suffering from lipedema, as they are unable to reduce their excess fat tissue despite eating a healthy diet and getting enough exercise. In the worst cases, they feel hopelessly at the mercy of this potential disease and have lost much of their zest for life as a result.
On the other hand, there are women who have spent years going from doctor to doctor without anyone being able to make the correct diagnosis, as the symptoms of lipedema are often not well known, even among medical professionals.
The aim of this article is therefore to explain what lipedema really is and, above all, what it is not. Research into lipedema is still in its infancy, and so many myths surround this new condition, which has been heavily hyped on social media.
Conclusion:
- Lipedema is a condition that is currently very present in the media but is often portrayed in a way that is riddled with myths and misinformation.
- Lipedema always involves symptoms—increased fatty tissue without symptoms or an uneven body shape does not constitute lipedema.
- The diagnosis of lipedema can sometimes be difficult to make, as specific examination parameters (blood tests, imaging) are lacking.
- The pinch test on the legs and arms can be useful in making a diagnosis.
- The causes of lipedema remain unclear and are currently being researched. Hormonal changes are suspected to be a trigger, as is a genetic predisposition.
- There are several successful treatment options for lipedema, so there is no need for those affected to give up hope.
- Lipedema is not necessarily progressive, i.e., it does not necessarily worsen over the course of a lifetime.
- If lipedema is suspected, a vascular specialist or lymphologist should be consulted.
Frequently Asked Questions
A possible indication of lipedema may be discomfort (especially pain) in increased fatty tissue on the legs or arms, or local pain when touched by, for example, partners, children, or pets.
Differences in body proportions between the upper and lower body are possible but not conclusive, and lipedema also occurs in people with harmonious body proportions.
There are both conservative and surgical treatment options.
The conservative approach focuses on wearing compression garments, manual lymph drainage, sufficient exercise, and improving dietary habits.
The painful fatty tissue on the affected limbs is surgically removed by liposuction.
The first signs of lipedema may be a symmetrical increase in subcutaneous fatty tissue on the legs or arms, which is painful either spontaneously or when touched.
Your primary care physician is usually your first point of contact. Vascular specialists such as vascular surgeons, phlebologists, or angiologists, along with lymphologists, are the specialists for lipedema.
A vascular specialist can also rule out vascular diseases as a differential diagnosis for pain in the extremities.
Lipedema always involves pain in the increased fatty tissue under the skin on both sides of the body.
Although lymphedema also causes swelling of the extremities, it does not cause pain and often occurs on only one side, affecting the feet or hands (which are never affected by lipedema).
Lymphedema can occur as a result of lipedema if the lipedema is associated with obesity, as being overweight can lead to lymphedema. Lipedema itself does not lead to lymphedema.
Further information on lipedema
What is lipedema?
Stadiums
Treatment
Impressions from practice
