Lipedema is predominantly a chronic condition involving a pathological build-up of adipose tissue. The word lipedema means ‘fat swelling’.
It is a fat disorder which is often misdiagnosed as simple obesity. Lipedema mainly affects women and typically presents in the thighs, buttocks and lower legs, and sometimes the arms at times causing considerable tissue enlargement, swelling and pain. In many cases it significantly impairs mobility, ability to perform activities of daily living, and psycho-social well-being.
What causes Lipedema?
Believed to be hormonal in nature, lipedema usually develops at puberty, but can also develop or worsen later in life due to hormonal changes associated with pregnancy, menopause, or gynecological surgery. Some patients are so seriously affected that they lead very restricted lives, sometimes to the extent of being unable to leave their homes. Many are not recognized by healthcare professionals as having the condition or are misdiagnosed. Unfortunately, awareness of lipedema among medical practitioners is poor, and little clinical research is focused on the condition. Even when it is diagnosed correctly, accessing appropriate care may be difficult because of poor understanding of treatment and referral routes, and geographical variations in clinic availability, funding and capacity. How to diagnose lipedema?
Part of the reason that lipedema may be under-diagnosed is that it may be mistaken for other conditions that cause subcutaneous tissue enlargement/swelling or fat deposition. The two most frequent misdiagnoses are:
- generalized obesity, particularly in young, otherwise healthy patients
- and lymphedema
In lipedema, the development of tissue enlargement is often insidious (Todd, 2016). It is usually bilateral and symmetrical, and most commonly affects the legs, thighs, hips and/or buttocks, with sparing of the feet.
Diagnosis of lipedema may be difficult in the early stages or in mild forms as the symptoms and signs may be subtle. The first stage of lipedema is characterized by extra tissue around knees, thighs, and ankles. The lower body slowly begins to grow and becomes larger than the upper body. The second stage is where the diagnosis is usually made, as the disproportion becomes obvious. In addition to the old symptoms the new ones begin to occur, including "orange-skin" like tissue, often painfully swollen legs, a cuff formed by fatty deposits around the ankle while the feet are being unaffected. The third stage manifests by fat collecting on upper arms, abdomen, and backs of legs, constantly swollen and painful legs and fat enveloping knees. Stage four involves the presence of lipolymphedema.
The adipose tissue enlargement may be accompanied by bruising without apparent cause or due to minor trauma only. Many patients with lipedema also often mention pain and extreme sensitivity/tenderness to touch and pressure in the affected areas. They also report that the affected areas are cooler than unaffected areas. Mobility may be restricted due to pain, mechanical hindrance, and/or hip and knee joint problems, particularly in patients with severe lipedema.
Currently, the best way to diagnose lipedema is performing manual inspection by a trained physician in conjunction with patient history. Upon palpation of the fat, the healthcare professional may feel an atypical texture to the fat, such as 'grains of sand or rice', tiny pebbles or pea-like nodules and/or large strands of nodules. However, the atypical texture may be shallow or deep and may be difficult to feel, especially if swelling is present.
Diet challenges
Many patients with lipedema have over many years tried repeatedly and often unsuccessfully to reduce the size of the affected areas through dieting and physical activity or exercise.
These efforts may have produced weight loss from non-lipedematous areas, but often have resulted in disordered eating behaviors, including anorexia nervosa, binge eating and bulimia. However, up to half of patients with lipedema may also be overweight or even obese. The inter-relationship between lymphatic function and adipose tissue explains the negative impact on the lipedema, causing additional swelling.
Principles of lipedema management
The management of lipedema requires patients and therapists to look at the whole picture. A holistic approach has to consider conditions which negatively influence the condition of the lipedema, particularly obesity, lack of exercise and lymphedema.
The main components of lipedema management have to include:
- Healthy eating with focus on a low inflammatory diet and weight management
- Improve lymphatic flow if indicated, manual lymphatic drainage
- Low impact physical activity and improving mobility
- Skin care and protection
- Compression therapy
- Management of pain
- Psycho-social support and management of expectation
Surgery to reduce bulk and specialized liposuction might be considered in more advanced lipoedema.
In summary, lipedema is a very complex issue which requires a unique, comprehensive, multidisciplinary approach to successfully illustrate the tremendous therapeutic results that can be achieved. Even though lipedema is a long-term condition that is not curable, the proper management of the condition has the potential to produce many benefits including
- Reduction in pain
- Improved limb shape
- Avoidance of impairment or improvement in mobility
- Management or avoidance of obesity
- Reduced likelihood of progression to lipolymphedema
- Minimization of secondary joint problems, such as knee and hip osteoarthritis
- Improved psycho-social well-being.
Lipedema - And now??
It is important to remember, you have a medical condition, and lipedema is not a choice.
You can help your body with adequate exercise and good nutrition, but a diet alone will not reduce lipedema. The best thing you can do in addition to take care of yourself is to proactively consult with a knowledgeable therapists to walk hand in hand the path of a happy and healthy you.