Managing Lipoedema

Posted by Jeanne Everett on 23rd Nov 2021

Lipoedema is poorly understood and is often miss-diagnosed and miss-treated. Those who suffer with lipoedema commonly find themselves moved from one medical department to another in search of a name and a diagnosis for this debilitating and distressing condition, and during this journey it is likely that they will have been told they are overweight or that they need to lose weight. But although weight loss can be achieved with dieting, that weight loss is disproportionate and doesn’t seem to make much difference.

So, what exactly is lipoedema, and how can we best manage this condition? In this post we will try to answer these questions, as well as examine the various garments available to help with lipoedema, also introducing Haddenham’s new ETO Grace range of compression garments, which have been especially designed and manufactured for those with lipoedema and are available to buy from Lymph Shop.

What do we know about Lipoedema?

There is still a lot we don’t know about lipoedema, but we are learning all the time, and maybe a good place to start is to look at what we do know about this condition. Lipoedema is a chronic inflammatory disorder of adipose (or fatty) tissue, which researchers think may possibly have a genetic cause.

It usually starts around puberty, but it can also appear or worsen at other times of hormonal changes, such as childbirth or menopause. It is much more common in women than men, and it is progressive. This means that unless it is well-managed, lipoedema can develop into what is known as lipo-lymphoedema, due to excess strain on the lymphatic system over a long period of time.

Lipoedema is different from lymphoedema, as in its early stages there are usually no signs of fluid or swelling, and although people refer to it as’ oedema’ it is not oedema but disproportionate laying down of fat. It is only in the severe stages that a person may experience classic swelling in the form of fluid, therefore it follows then that the sooner lipoedema is identified and treatment started, the better; early, appropriate interventions can prevent the condition from progressing, can improve mobility, and can help to maintain independence and improve quality of life.

Other symptoms that differentiate Lipoedema from lymphoedema is that quite often it will effect both legs, sometimes all four limbs, whereas lymphoedema can be more unilateral, affecting one limb. Another way of differentiation is the presence of an ankle cuff or bracelet, lipoedema does not affect the feet. There may often be pain and sensitivity in the limbs.

How can we best manage Lipoedema?

Managing lipoedema requires following a carefully developed and agreed regime of self-care, and working together with your lymphoedema or lipoedema practitioner to ensure that this care is individual to you. Several different aspects of management may be incorporated within the care plan, and these will usually be based on the recommendations in the Best Practice in the Management of Lipoedema document (Wounds UK, 2017).

Caring for the Skin is important for us all, but this is especially so when you have lipoedema or lymphoedema. Careful washing and drying particularly in any skin folds or creases, and daily application of a non-perfumed moisturiser will help to keep the skin healthy and well-nourished, preventing cracks and breaks and thereby reducing the risk of developing an infection (cellulitis). This is particularly relevant if you have Lipo-lymphoedema as you may be more prone to getting cellulitis due to the accumulation of fluid as well as fat cells in the tissues. Applying your moisturiser in long upward strokes, starting at the top of the limb and working downwards will also help with lymphatic drainage.

Physical activity and improving mobility is also important for all of us, but with heavy swollen legs any form of exercise can seem difficult to even start, let alone to persevere with. Working our muscles, even a little, will help the lymphatic system to pump more effectively, removing fluid, toxins and waste products from the body’s tissues and helping to reduce swelling. Finding a form of exercise or movement which places less strain on your joints can help to prevent the pain and aching associated with exercising when you have lipoedema, and swimming is popular because of this – the buoyancy of the water providing support for heavy limbs. It may be helpful to exercise with someone who is empathetic to your condition and to the limitations this places on you, as those with lipoedema may feel embarrassed by their body and hence by their appearance.

Healthy eating and weight management is again important for everyone, but being overweight can make lipoedema and lymphoedema worse, and maintaining a good healthy weight should therefore be a priority. In fact, the Lipoedema Best Practice document states that “ people who have a healthy diet, engage in physical activity/exercise or employ other aspects of self-management have fewer symptoms, better functional capability and fewer complications than those who do not ” (Wounds UK, 2021). Eating healthily is a good habit for all of us to adopt. A, a good guide for you would be to measure your waist and hips to determine what your ratio is, as for many weight and body mass index do not take into account the shape or size of the person with lipoedema. A healthy waist to hip ratio is below 0.85

Managing pain is important for those with lipoedema as the weight of heavy limbs can cause excess strain on joints and muscles. Painful skin and tissues can make putting on and wearing compression garments very uncomfortable, especially if these are not well-fitting. Conversely, the pain associated with lipoedema can be helped by wearing compression hosiery, but this must be correctly measured and fitted, and is recommended as best practice.

Compression is another important aspect in managing lipoedema, but although recognized as reducing pain, limiting the progression of symptoms and limiting the development of complications, compression can be problematic for those with lipoedema. This can be due to the unusual shape, as well as the size of limbs; those with lipoedema will often have larger than average thighs, hips, abdomen and buttocks, but with a small waist and with feet unaffected by the lipoedema. Because most compression garments are manufactured for lymphoedema patients, and not for those who have lipoedema, the above problems of poorly fitting garments are not uncommon.

Furthermore, problems with compression garments have been recognised as:

  • Being difficult and painful to put on & take off,
  • Cutting into the skin,
  • Uncomfortable to wear,
  • Made of fabric which irritates the skin or is scratchy,
  • Not fitting well,
  • Being too tight
  • Having pressure which is too difficult to tolerate. (Paling & Macintyre, 2021)

Introducing ETO Grace

The above issues of poorly fitting garments for those with lipoedema has led to the development of the new ETO Grace compression tights which have been especially designed and manufactured with lipoedema in mind.

The range includes footless tights, leggings and capri pants, which are all available in beige, black or white, with the option of zips or hook and eye fastenings to help with donning and doffing. As well as being suitable to wear day to day to help with lipoedema symptoms, they can also be worn immediately post liposuction for lipoedema of the legs, thighs, hips, buttocks or abdomen.

The advantages of the ETO Grace fabric are many: it is soft and stretchy, making donning and doffing easier; because the fabric is lightweight the garments will dry easily overnight; they can be safely machine washed at 30’C; they are comfortable; and the fabric is breathable.

In addition, each garment is unique and bespoke, being made to each person’s individual measurements, then “cut & sewn” from that pattern in the ETO factory. Measuring for Grace may therefore take a little longer than for an off the shelf garment, but due to the new ETO Grace specific measuring form now being used by lymphoedema clinics, when your garment arrives it should fit well and have none of the old problems: it should stay up and not work its way down as the day progresses; it should be comfortable all day long; and it will be aesthetically pleasing.

As well as Grace, don’t forget about the existing range of compression garments available from Haddenham, many of which are worn by those with lipoedema. A particular mention should be made of the ETO full body garments – full body panty with open toe, leggings or capri pants, as well as well as the Haddenham Veni Capri pants for those with stage 1 or 2 lipoedema. Also, fairly new to the Haddenham range is Comfiwave, a gentle compression garment, available for lipoedema as a full leg or a hip spiker (thigh and hip coverage). Comfiwave can be worn at night to compliment daytime compression, helping to ease the discomfort suffered by those with lipoedema.

Wearing compression is important in managing lipoedema, as are the other aspects of care. These are usually based on the recommendations in the Best Practice in the Management of Lipoedema document (Wounds UK, 2017): caring for the skin; managing pain; healthy eating; weight management; physical activity and improving mobility. This carefully planned regime of self-care, working together with your lymphoedema or lipoedema therapist, and wearing your compression garment will help towards improving your lipoedema and helping you generally to feel more positive about yourself.