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ChroniC Conditions CliniCal
Accurate diagnosis and self-care
support for women with lipoedema
lipoedema is a little-known but relatively common condition that can be challenging to
diagnose. Anne Williams and Isobel MacEwan provide practice nurses with the knowledge to
give practical and emotional support to affected patients
ipoedema is a long-term, progressive condition, ABA
usually presenting as symmetrical enlargement
of the legs and buttocks, and mainly affecting lipoedema is a long-term progressive condition usually presenting
women (Langendoen et al, 2009; ife et al, 200 as symmetrical enlargement of the legs and buttocks and mainly
istinct from obesity or lymphoedema, lipoedema
L affecting women. istinct from obesity or lymphoedema lipoedema is
is associated with an unusual distribution and proliferation associated with an unusual distribution and proliferation of diet-resistant
of diet-resistant inflammatory fat tissue (Figures 1 and 2 inflammatory fat tissue. his article provides background to lipoedema
and symptoms such as pain (ife et al, 200 Lipoedema diagnosis and discusses self-care support for women with lipoedema.
may also affect the upper body and arms and can lead | | |
to secondary lymphoedema, sometimes referred to as ey words lipoedema econdary lymphoedema Compression
lipo-lymphoedema his article provides background to therapy | elf care
lipoedema, describes how lipoedema affects women, and
how it is diagnosed t identifies key points for primary care
practitioners providing self-care support for women with Lipoedema, 20 (Figure 3 arly diagnosis of lipoedema is
lipoedema, and describes the work of alk Lipoedema, a essential, so women can learn self-management approaches
third sector support organisation in the (Box 1 that minimise progression of symptoms and reduce the risk
of complications such as lymphoedema and cellulitis (ritish
Background Lymphology ociety, 20
Lipoedema often first develops around puberty and appears
to be eacerbated by hormonal change during pregnancy and Pathophysiology of lipoedema
the menopause (ife et al, 200 t has been estimated that he eact pathophysiology of lipoedema is unclear (él
lipoedema may affect up to
of women after puberty et al, 20 but various processes appear to contribute
(öldi and öldi, 200, although accurate epidemiological to the characteristic changes of lipoedema (Table 1 at
evidence is lacking orner-ordero et al (202 reported cells increase in number, becoming inflamed and infiltrated
9
of patients attending their lymphoedema clinic in pain by macrophages lood capillaries become dilated, fragile
to have lipoedema specific cause of lipoedema has not and leaky, leading to ecess capillary filtration and further
been identified, but positive family history may be present in inflammation (ife et al, 200; él et al, 20 s fat
up to
of cases (Langendoen et al, 2009, with possible tissues enlarge they are less well perfused and become cold
autosomal dominance inheritance ormonal, connective to touch Lymphatics may be normal in the early stages,
tissue and autoimmune factors may also be involved but lymphatic microaneurysms develop in the later stages
(Langendoen et al, 2009; él et al, 20 necdotal (mann-esti et al, 200 Lymph drainage becomes
evidence indicates that lipoedema may be associated with compromised and protein-rich oedema accumulates
connective tissue disorders such as hlers-anlos syndrome, in the tissues, leading to secondary lymphoedema
or conditions such as hypermobility or fibromyalgia ( alk agnetic resonance imaging ( has shown enlarged
lymphatic vessels and dermal backflow in people with
lipo-lymphoedema (Lohrmann et al, 2009 hese
d Dr Anne Williams lecturer in nursing/lymphoedema pathophysiological changes provide strong indication for
t
l nurse consultant ueen argaret niversity the use of compression therapy in this group of patients
e
r
a dinburgh trustee alk lipoedema
c (Table 2
h
t
l
a
e Isobel MacEwan chair alk lipoedema
a Diagnosis of lipoedema
ubmitted for publication ay accepted
iagnosis is currently undertaken by medical and family
for publication following peer review
une
© history, clinical eamination, and identification of
ractice nursing ol no
pnur_2016_27_7_325_332.indd 325 23/06/2016 12:29
CliniCal ChroniC Conditions
igure . a woman with early stage lipoedema igure . a mother and daughter with lipoedema
showing a typical ‘lipoedema shape’
characteristic signs and symptoms (Table 1, sometimes
within a specialist lymphology or dermatology centre bruising easures such as weight and body mass inde
n the early stages the skin is soft and loose, with do not appear to be useful parameters for diagnosing
characteristic changes in leg shape, an ankle ‘bracelet’, or monitoring changes in someone with lipoedema
and fat pads at the knees (Figures 1 and 2 he feet are (Langendoen et al, 2009
usually not affected in the early stages, in contrast to iagnostic tests such as lymphoscintigraphy, ,
someone with lymphoedema ffected tissues may be computerised tomography ( , and ultrasonography are
tender when pressed, bruise easily, and may feel cold to not routinely used outside specialist centres, and are most
the touch at nodules or small pea-sied lipomas may useful to eclude other pathologies ore recently, small
be palpated under the skin (erbst, 202 and larger studies have described muscle testing (meenge et al,
nodules or lipomas may later develop s the condition 20, and tissue dielectric testing (irkballe et al, 20
progresses, fat lobes bulge at the thighs and knees, the as ways of differentiating lipoedema, but further research
tissues become fibrosed with deep skin folds (Figure 2, is reuired lood tests such as -reactive protein may be
and there is a risk of skin damage and cellulitis useful in identifying infections such as cellulitis (ritish
aking a diagnosis of lipoedema can be challenging Lymphology ociety, 20, and hormonal testing may
(eter and ise, 20 he Lipoedema ig urvey be reuired to investigate thyroid and pituitary function
of 20 women with lipoedema reported years as the (erbst, 202 are types of adipose tissue disorders
average age of diagnosis (eter and eter, 20, often such as ercum’s or adelung’s disease (erbst, 202
when the woman’s health had deteriorated and lipoedema should also be ecluded ore work is reuired to d
t
was at a late stage Lipoedema must be differentiated from, develop clinically relevant markers and diagnostic criteria l
e
r
a
but may eist alongside, conditions such as lymphoedema, for lipoedema c
h
t
l
a
obesity, chronic venous insufficiency, or oedema due to e
heart, kidney or liver failure n contrast to lipoedema, Eperiences of women liing a
obesity affects the whole body, responds to weight with lipoedema
loss, is not painful, and is not usually associated with
Lipoedema is freuently misdiagnosed as obesity or ©
ractice nursing ol no
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CliniCal ChroniC Conditions
Bo About alk ipoedema lymphoedema onseuently, a woman may live for
many years with the physical and emotional challenges of
alk lipoedema is a -based third sector organisation that is active lipoedema (Table 3 before receiving a correct diagnosis
across the . it provides support to people with lipoedema their families (vans, 20 ttempts to lose weight usually lead to a
and carers. alk lipoedema initiates and participates in various pro¡ects reduction in fat at non-lipoedema areas of the body, with
to increase awareness of the disease and improve research evidence. little effect on the lipoedema fat (ife et al, 200 omen
it has a vision for the future that everyone who has lipoedema will be with lipoedema often talk of having a comple relationship
given an accurate and timely diagnosis receive an individual care plan
and have access to an appropriate range of services and support with with food, and there is some evidence suggesting they may
self-management. alk lipoedema believes that education is the key to be at particular risk of mental health problems such as
empowering people with lipoedema and improving treatments and care. depression (erbst, 202; eter and ise, 20; alk
alk lipoedema offers / support through a number of moderated Lipoedema, 20 summary of key issues eperienced
social media platforms including¢ a web-based forum on the website by women who are members of alk Lipoedema highlights
witter and closed groups on acebook where women can talk privately various physical and functional problems (Table 3
and support each other. alk lipoedema also run a series of roadshows ssues such as gait change may be significant due to leg
throughout the for women with lipoedema and their families along with heaviness, and fat lobes at the insides of knees and thighs
regular conferences for professionals and people living with the condition. may alter walking patterns (utch oundation etwork
for Lympedema and Lipedema, 20 owever, research
Numbers of women with lipoedema self-reporting evidence relating to the physical and the psychosocial
other medical problems (n=60) implications of lipoedema, and uality of life in this group
of women, is very limited
Lymphoedema
Varicose veins upport with self-management of lipoedema
Fibromyalgia hen finally diagnosed with lipoedema a woman may
feel a mi of relief and distress to learn that her various
Tendency to bruise easily symptoms, eperienced over many years, represent a
Cellulitis lifelong condition and should be taken seriously (eter
Leg ulceration and eter, 20 anagement of lipoedema reuires
Dercum’s disease a partnership approach between women and health
professionals, supporting and empowering women
Ehlers-Danlos syndrome towards effective self-management and lifestyle changes
Joint problems that will alleviate symptoms and prevent progression of the
Hypermobility condition (utch oundation etwork for Lympedema
Depression and Lipedema, 20; eter and eter, 20
small number of women may be suitable for
Food intolerances liposuction, although this is not a curative treatment, and
research evidence is limited (apprich et al, 20; chmeller
et al, 202; aumgartner et al, 20 onservative
igure . perience of medical conditions reported by women with therapy approaches and self-care are key to long-term
lipoedema alk lipoedema . ity women completed the management of lipoedema (olnoky and emény, 200;
uestionnaire their median age was
years range – years eter and ise, 20 and include¡ healthy eating habits;
skin care and protection to prevent damage and cellulitis;
able A summary of the characteristic signs of lipoedema compression therapy; manual lymphatic drainage, eercise,
movement and various other techniues to improve lymph
ilateral symmetrical enlargement of the legs that may also affect the drainage and skin¢tissue condition
buttocks abdomen and arms but may lead to disproportionate body shape
at ‘bracelet’ at the ankle and fat pads at the knees ealthy eating habits
lthough lipoedema fat does not generally respond
eet are usually not affected in the early stages to dietary measures, healthy eating habits, weight
kin feels soft loose cold and may be dimpled management and reduction of normal fat are encouraged
in women with lipoedema, particularly prior to any
enderness pain in the tissues particularly on pressure surgery owever, conventional advice, such as the d
t
atwell £uide, may not be appropriate for women with l
mall fat nodules may be palpated in the subcutaneous tissues e
r
a
lipoedema utrition and dietary changes such reducing c
h
t
l
endency to bruising and venous varicosities may be evident a
intake of foods that produce inflammation in the body e
(sugar, carbohydrates, red meat are recommended by a
lipoedema fat is unresponsive to weight loss
some lipoedema medical specialists (erbst, 202, and
educed mobility and changes in gait due to fat distribution further research is reuired
©
ractice nursing ol no
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ChroniC Conditions CliniCal
able ompression therapy choices for women with lipoedema
ompression garment
● Choice of styles—below knee thigh length panty type mainly in beige or black
● Compression class may be most suitable for tender lipoedema
● Compression class or may be reuired if lymphoedema component evident
● Custom-made flat knit garments may ensure accurate fitting and accommodate poor shape better than
circular knit garments
● Circular knit elastic garments may be unsuitable for women with lipoedema due to skin folds and soft tissue
● ome women do not reuire foot compression a legging-type garment can be prescribed
● an applicator may be reuired to aid donning and doffing ¥ounds
ompression bandaging
● ulti-component inelastic systems may be used to reduce oedema improve limb shape and tissue condition
and heal ulceration
● ay be reapplied daily particularly if oedema is reducing and used in con¡unction with other therapies
including manual lymph drainage skin care and eercise
ompression-wrap with elcro attachments
● ad¡ustable compression device consisting of inelastic material sections that wrap around the leg and are secured
● sed to reduce oedema and improve skin integrity
● esigned to allow the person or the carer to apply and reapply in the home setting
● ay be used as an essential part of post-operative care following liposuction surgery
kin care and protection omen with lipoedema may not be suitable for highly
kin care and protection includes daily washing of the skin, elastic circular lymphoedema garments due to their soft
use of appropriate emollients, avoidance of allergens and skin, deep skin folds, and fat lobes ompression garments
prevention or treatment of skin damage such as scratches, without feet sections may also be appropriate for some
fungal infection, blisters, burns, insect bites or blunt force women if their feet are not swollen choice of garments
here possible, it is important to avoid taking blood may be reuired for different activities, and once prescribed
pressure on a lipoedematous limb, taking a blood sample, women should be followed up to evaluate suitability
or giving an in¤ection into lipoedematous fat, as this can be and fit omen may need advice on how to apply and
ecruciatingly painful for the woman (Table 3, and may remove compression products, and to be prescribed a
lead to significant bruising garment applicator if necessary (ounds , 20
kin folds in particular can become red and infected, ndividualised, holistic assessment and a partnership
and some women may find personal care awkward if their approach are essential, as compression reuirements vary
mobility is affected ntiseptic, antifungal or other skin between individuals inding products that are acceptable
and wound care products may be reuired and women to a woman and effective is critical to a good long-term
may need advice on clothing and footwear that can be outcome for the woman and to ensure cost-efficiency
worn comfortably to disguise the swelling, improve gait of care
and prevent falls
Manual lymphatic drainage
ompression therapy anual lymphatic drainage (L is a gentle but very
ompression therapy is essential for successful specific type of massage designed to enhance lymph
management of lipoedema symptoms, as compression drainage, remove ecess fluid from the tissues, reduce
counteracts ecess capillary filtration, supporting inflammation, and alleviate symptoms such as pain
venous and lymphatic function, and reducing oedema (ittlinger et al, 20 his is available through some
accumulation and inflammatory processes in the lymphoedema clinics, but women may access
d interstitial tissues (¥artsch and offatt, 202; ounds L privately through organisations such as L
t
l , 20 wide range of compression products is urrently, there is no empirical evidence to inform the use
e
r
a
c available (Table 2, and specific skills and knowledge of L in women with lipoedema but women often find
h
t
l
a
e are reuired to prescribe correctly to ensure garments L helpful in managing symptoms such as pain and
a fit well and do not cause skin damage or pain course swelling elf-lymph drainage techniues such as gentle
of compression bandaging may be reuired for someone self-massage or skin brushing are undertaken by some
who has secondary lymphoedema, or chronic ulceration women aution is reuired with skin brushing, as this
©
ractice nursing ol no
pnur_2016_27_7_325_332.indd 329 23/06/2016 12:29
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