Last Tuesday I attended the Foot Health Conference held at Silverstone. Amongst the excellent range of speakers, one lecture particularly stood out. Nicola O’Brian gave an emotive and fact-filled talk on Lipoedema. I was not the only clinician in absolute bits by the end. Nicola’s story of struggle living alongside this chronic, debilitating disease, compounded with the realisation that I’ve probably seen this condition umpteen times in my practice and never realised it was a distinct condition from obesity, left me feeling at first – bereft, followed by a new determination to understand the condition better and help to raise awareness. Lipoedema (not lymphoedema – different disorder) is a dysregulation of normal fat metabolism. It is not caused by eating too much and not getting enough exercise. It almost exclusively affects women and appears to be hormonally driven; with the first presentation of symptoms such as leg pain/heaviness in the legs, pain after exercise, atypical fat distribution (bottom half of the body mostly affected) typically occurring in either the early teens, pre or post pregnancy or during menopause.
Signs & Symptoms
Lipoedema presents bilaterally - involving both legs.
The uneven, abnormal build-up of fatty (adipose) tissue mainly involves the hips, buttocks and lower and upper limbs.
Lipoedema causes significant disproportion of hip-to-waist ratio.
In the early stages of Lipoedema, the upper body may remain slender as the lower body enlarges and fat accumulates over the hips, thighs and legs.
In the later stages of Lipoedema, mobility is restricted and the condition becomes more chronic with associated joint problems. Skin changes can be seen. A secondary lymphoedema may also develop. The later stages may lead to further mobility problems or disability.
People with Lipoedema may experience psychological distress, low self-esteem, anxiety and depression.
Fatigue and pain/heaviness may be experienced in the affected areas.
Affected areas might be hypersensitive to touch or pressure, and easily bruised.
Weight-loss diets have little or no effect on Lipoedemic fat.
Fat pads form above, inside and below the knees and the outer region of the upper thighs and sometimes the buttocks.
Flat feet and gait can be affected and contribute further to mobility issues.
Feet and hands are generally unaffected, though a ‘cuffing’ effect may be seen to the ankles or wrists.
Small varicosities or spider veins may be seen in the affected areas
Skin may feel cool and have a dimpled appearance or nodular texture.
Skin can feel tender to the touch to the sufferer, and bruises very easily.
It is a chronic and incurable condition that is sadly seldom identified in primary care, and thus often misdiagnosed and mismanaged.
Nicola went on to describe how the guidance to ‘eat less, move more’ is completely the wrong advice for lipoedema sufferers, as this can throw the body into a stress state – potentially aggravating this inflammatory condition and worsening symptoms.
Diagnosis may not come until the latter stages of the disease, at which point the patient’s mobility may already be significantly affected and there will undoubtedly be additional co-morbidities to manage.
What really struck me was what these women must go through psychologically. I don’t care about the ‘body positivity’ movement – the perception of beauty and success in life for women is still so aligned with what we look like; and we need to look thin. I personally take comfort in that my body does change when I eat less and move more (I’m just not very consistent with it!!) – but for women with lipoedema, they could be anorexic in terms of caloric intake, and still be – what the uninformed onlooker might categorise as – extremely fat.
Treatment As lipoedema research is underfunded and scant, this life-limiting condition is still not really recognised by the NHS.
Treatment of lipoedema is aimed at stalling the progression of the disease, managing pain symptoms and enabling function so that patients can remain as mobile as possible, for as long as possible.
Treatment at present focuses on following a careful diet (there is some research ongoing relating to non-inflammatory diets, including Keto) and gentle exercise programme (e.g. swimming and cycling), lymphatic drainage massage plus application of compression plus talking therapies. Patients will not be offered liposuction surgery on the health service, which is the only real remedy for removal of the diseased fat cells.
Podiatrist’s Perspective
Our role as podiatrists, experts in the lower limb, is to improve our awareness of this condition and have the courage to have a difficult conversation with our patients if we suspect they may have lipoedema – and if we can identify it in the early stages, the better the outcome for the patient. For more information, there is a wealth of information on the Lipoedema UK and Talk Lipoedema websites or look up Nicola O’Brian online – she is an engaging and inspiring speaker and has featured on many podcasts and YouTube videos.
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