Key words
lipoedema - paradigm shift - european consensus - therapy
Schlüsselwörter
Lipödem - Paradigmenwechsel - Europäischer Konsensus - Therapie
Introduction
This is the fifth and final part of our series on the myths and facts surrounding
lipoedema.
In these articles, the two lead authors have critically addressed statements on lipoedema
that have existed and been propagated for decades, and have reviewed them for supporting
scientific evidence. Many of these statements have become “lipoedema dogma” – deemed
to be guiding principles whose validity is no longer in doubt. And, as a result of
this dogma, an understanding of this disease has developed that has very little to
do with the patients’ actual problems. In addition, research has shown that there
is no scientific evidence at all for the pathophysiology previously thought to underlie
lipoedema.
To briefly recapitulate the myths discussed in parts 1 to 4, it is clear that there
is no evidence at all for the presence of oedema in lipoedema [1]. Neither clinical examination nor diagnostic imaging has ever shown there to be
a significant accumulation of fluid in the tissues of patients with lipoedema, which
makes “decongestion of the tissues” by manual or automated lymphatic drainage techniques
obsolete. The term “lipoedema” is therefore outdated and should be reconsidered.
Although it is often said that lipoedema is a progressive disease, there is no evidence
to support this assertion [2]. On the other hand, obesity is often progressive and lipoedema may worsen as the
patient’s weight increases. For this reason, the (frequently misused) term of “lipolymphoedema”
is also obsolete. Progressive obesity rather than lipoedema is the cause of additional
lymphoedema. Many patients, therefore, have three diseases that need to be treated:
obesity, lipoedema, and obesity-related lymphoedema.
Our data (now of 150 cases) also show a high level of psychological vulnerability
in the great majority of our patients with lipoedema [2]. But mental health issues were present before the onset of the typical lipoedema
symptoms and have therefore an influence in the patients’ perception of pain.
Our data have reduced to absurdity the claim that losing weight has no effect on lipoedema
– a view widely shared by many of our colleagues, especially those offering liposuction
– and also the belief, often fueled by the media, that “lipoedema makes you fat”.
In fact, the opposite is true: obesity makes you fat. Speaking in purely physiological
terms, weight gain includes an increase of adipose tissue in the legs. Also speaking
purely physiologically, weight loss therefore includes a reduction of adipose tissue
in the legs [3]. The dramatic improvement in lipoedema which patients experience after bariatric
surgery is the subject of an ongoing doctoral research project being carried out in
conjunction with University Hospital in Freiburg, Germany. We already have the preliminary
results [4].
And finally, we have shown that the current situation regarding available studies
on liposuction is disastrous. The claim that “liposuction cures lipoedema” is just
wishful thinking on the part of “lipoedema surgeons” and many patients, and in no
way reflects reality [5].
Current status of reimbursement for liposuction by healthcare insurance
Current status of reimbursement for liposuction by healthcare insurance
Despite this lack of reputable studies, the current German Minister of Health has
been effectively campaigning for liposuction to be covered by healthcare insurance
[6].
And despite this lack of reputable studies, the Federal Joint Committee (G-BA) has
capitulated. The situation now (July 2019) is such that it should be possible to prescribe
liposuction for “stage 3 lipoedema” under statutory healthcare insurance from 1 January
2020 onwards [7].
Nevertheless – and this is crucial – there is no even remotely meaningful staging
of lipoedema. The current classification depends upon a subjective (and therefore
arbitrary) assessment by the examiner and is based on morphological criteria alone,
without taking the patient’s actual symptoms into consideration. These “stages” therefore
completely ignore the clinical reality. In the so-called stage 3, there are women
with highly disproportionate adipose tissue in the legs (or arms) who have only mild
symptoms or none at all. At the same time, physicians treating lipoedema see women
with mild disproportion – and de facto allocated to stage 1 – who have intense pain
in the soft tissues of the leg.
The classical “patient with stage 3 lipoedema” referred to our outpatient clinic is
a severely overweight woman whose main disease is obesity. In our opinion, carrying
out liposuction on these often morbidly obese patients constitutes malpractice, a
malpractice which is possibly reimbursed, starting January 2020, at the expense of
the statutory health insurance (and thus of all premium payers). Faerber and Bertsch
have therefore submitted a comprehensive statement on this wrongful decision to Prof.
Josef Hecken of the G-BA in Germany. This statement can be accessed on the website
of the German Society of Lymphology [8].
Lipoedema – a necessary paradigm shift
Lipoedema – a necessary paradigm shift
Parts 1 to 4 in this series of articles on the myths surrounding lipoedema have made
it clear that we have to radically change our view about lipoedema. Changing our perspective
means getting away from the idea of “oedema in lipoedema” – and hence away from the
dogma that decongestion is absolutely necessary – and towards the actual problems
faced by our patients with this condition. Such a paradigm shift in a disease that
has been described in the same way for decades cannot be left to individuals, but
must be put on a much broader footing. For this reason, the lead author of this series
invited renowned lipoedema experts from various European countries to discussions
on the subject. The first European Lipoedema Forum was held in Hamburg in June 2018,
with participants from five countries. The second forum in March 2019 included experts
from seven countries. The goal was to establish a consensus that would reflect the
view shared by these European countries, following scrutiny of the available literature
and at the same time taking many years of clinical practice with these patients into
consideration. Appropriate to the clinical complexity of lipoedema, the participants
provided an interdisciplinary approach: psychologists, physiotherapists, nutrition
and obesity experts, lymphoedema/lipoedema nurses (common in the UK), doctors treating
conservatively, surgeons, and the chair of Lipoedema UK, a British patient support
group. Nearly all of the participants in the European Lipoedema Forum had previously
published work on lipoedema, had been involved in drawing up their own national lipoedema
guidelines, or were on the executive board of their respective specialty society.
The consensus drawn up in Hamburg was established using open space technique (OST)
and the formation of interdisciplinary working groups which then presented their results
to the entire expert group for reaching a consensus.
In the fifth part of our series on lipoedema we will summarise the relevant findings
of this consensus, focusing on the new treatment recommendations for Part 5 is therefore
a combined effort between the previous lead authors and the participants of the European
Lipoedema Forum. In a second step, the final consensus paper “European Best Practice
of Lipoedema” will be issued as an international publication.
We would like to state explicitly, however, that the European Lipoedema Forum experts
listed as co-authors are responsible only for the consensus statements and the subsequently
developed therapeutic concept, while the two lead authors are responsible for the
article in its entirety.
Consensus statements from the European Lipoedema Forum
Consensus statements from the European Lipoedema Forum
Before we address the therapeutic concept for the treatment of lipoedema in depth,
we would like to present the key consensus statements on the “Scientific Background”
and the question of the “Diagnostic Approach” to lipoedema. To avoid misinterpretations
in translation, we are using the original statements that appear in the Hamburg consensus
paper [9].
Consensus agreement for “Scientific Background”
There is
no
scientific evidence:
-
that Lipoedema is an “oedema problem”
-
that MLD is reducing the patients’ complaints due to its drainage effects
-
that Lipoedema is a progressive disease
-
that weight loss is not effective
-
that Lipoedema is the cause of Lymphoedema
-
that 11 % of the female population suffer from Lipoedema
-
that onset of Lipoedema is during puberty
Consensus agreement for “Diagnostic Approach”
Re oedema
-
Orthostatic oedema does not have to be present for Lipoedema
-
Oedema is only present in a small subgroup of Lipoedema patients
-
Conclusion: Oedema is not pathognomonic for Lipoedema
Re the distribution of adipose tissue
-
Disproportional fat distribution must be present for Lipoedema
-
Differential diagnosis:
-
Obesity is often progressive, usually not Lipoedema. If obesity is progressive, Lipoedema
can get worse.
-
Conclusion: Disproportional fat distribution is a major symptom of Lipoedema
Re pain/symptoms in the soft tissues
-
Pain/complaints in the soft tissue of the legs (sometimes arms)
-
Other diseases must be excluded as the cause of pain
-
Pain must be further differentiated:
-
Pain must be assessed as objective as possible: Visual Analogue Scale (VAS) 0–10,
pain questionnaire, Central Sensitization Inventory (CSI)
-
Conclusion: Pain/complaints in the soft tissue of the legs or arms are a major symptom
of Lipoedema
Re overweight and obesity
-
Overweight/obesity is an aggravating factor of Lipoedema
-
Majority of Lipoedema patients are obese (62–88 %)
-
Lipoedema patients usually suffer from their weight gain
-
Majority of patients try “diet and exercise” and experience yo-yo effect
-
Weight gain can impair Lipoedema
-
Obese Lipoedema patients often experience a lack of fitness and mobility
-
Conclusion: Obesity/weight gain must be focused on
Re the mental health of patients with lipoedema
-
Psychological issues are an additional aspect of Lipoedema
-
Impact of psychological distress is underestimated
-
Psychological vulnerability contributes to the amount of pain perception
-
Eating disorders are often present and need to be treated
-
Lack of self-acceptance because of current beauty ideal
-
Conclusion: Psychological assessment is a must
It is clear that a substantial change in perspective has taken place, not only in
the scientific understanding but also in the diagnostic approach to the disease. The
consensus of the European expert group is that there is no scientific evidence to
support the lipoedema dogma which has been published and propagated for decades. There
has also been a shift in focus: while the disproportionate increase in adipose tissue
in the limbs and the symptoms associated with this fatty tissue increase are considered
to be major symptoms, oedema (and also the tendency to developing haematoma) is now
considered to be only a very minor symptom in the diagnosis of lipoedema. Instead,
great importance is given to both obesity and the patient’s mental health (which has
a significant effect on pain perception).
Pathophysiological considerations
Pathophysiological considerations
The two lead authors have proposed a pathophysiological model to explain the symptoms
associated with lipoedema to the patients; this model is also used by their colleagues
at the Foeldi Clinic.
When patients present with a history of being diagnosed with lipoedema, routine practice
at the Foeldi Clinic is now to ask not only about any changes in weight but also about
the time of onset of the pain.
In this context, we know that one of the main complaints in patients with lipoedema
regularly consists of weight gain – some patients put on only six kilograms, some
gain 40 kg or more – with a disproportionate increase in the legs (and less commonly
in the arms). An increase in weight basically means an increase in adipose tissue.
A hormonal pattern may develop in the expanded adipose tissue, resulting in low-grade
inflammation and hypoxia of the fat cells [10]. An increase in adipose tissue leads particularly to a local increase in proinflammatory
hormones (adipokines) [11]
[12]. In the second part of our series of articles, we already cited Pou, who wrote that
the subcutaneous fatty tissues “appear to be associated with chronic inflammation”
[13]. At the same time, Rutkowky et al. stated, “Adipose expansion results in tissue
hypoxia” [10]. Fat cells are only able to expand with increased vascular growth. The vessels’
inability to keep pace with the expanding adipose tissue may lead to hypoxia. Hypoxic
conditions in this tissue lead to an increased expression of hypoxia-inducible factors
(HIF1a) [14]. HIF1a in turn induces inflammation of the adipose tissue [15].
Earlier findings by Kayserling also pointed in the same direction: in the histology
of patients with lipoedema he observed an increase of crown-like structures that were
nothing other than a step in the elimination of dying fat cells [16]. More recent data from Karen Herbst’s research team in the USA confirm the inflammatory
processes in the subcutaneous adipose tissue of patients with lipoedema. One study
showed an increase in the sodium content of the skin in these patients. The authors
wrote, “Skin sodium accumulation is an emerging hallmark of inflammatory diseases”
[17]. A study published in 2019 confirmed the inflammatory processes in the adipose tissue.
The authors found a greater increase in macrophages in the fatty tissue of patients
with lipoedema than in the control group [18].
Like the hypoxia, this low grade chronic inflammation may contribute to the patient’s
perceived pain [19].
[Fig. 1] depicts these complex pathophysiological processes.
Fig. 1 Mechanisms of adipose tissue dysfunction and inflammation. Long-term increased energy
intake and little physical activity lead to weight gain and an increased flow of nutrients
into the adipose tissue. This increased supply causes hypertrophy of the fat cells
with subsequent hypoxia in the adipose tissue, activation of stress signalling pathways,
autophagia, apoptosis, and other mechanisms. These processes may also be potentiated
by increased antigens from the intestines (leaky gut hypothesis) or the release of
cell-free DNA. In turn, the adipose tissue secretes chemical attractants and endothelial
adhesion molecules that bind integrins and chemokine receptors on monocytes and recruit
them into the adipose tissue. Inflammation may then result. Source: Blüher M. Adipokine
& klinische Bedeutung. Adipositas – Ursachen, Folgeerkrankungen, Therapie 2019; 13(01):
6–13. doi:10.1055/a-0804-6353.
[Fig. 2] shows the first part – the somatic aspects – of the model that we use in our clinic
to explain to the patients how the pain develops.
Fig. 2 The increase in adipokines in the expanded fatty tissue leads to an inflammatory
reaction (low grade inflammation) and hypoxia, which may cause mild pain.
However, this somatic view of lipoedema is just one side of the coin.
In the past, the medical profession has viewed pain exclusively as a warning signal
for tissue or nerve damage. More recently, we have come to understand that chronic
pain can also be (co-) triggered by stress or personal conditions. The mechanism of
stress-induced hyperalgesia (SIH) is also of importance in patients with lipoedema,
especially when they experience intense pain. The – absolutely genuine – pain that
patients suffer is less related to the extent of tissue damage, but has more to do
with the way in which the brain and nervous system interpret the stimulus as “danger”
[21].
A pilot study carried out by the lead authors [2] (now including 150 cases) showed that patients who had suffered mental stress over
a long period gave higher estimates of the severity of the lipoedema pain (7–8 and
even up to 10) on a visual analogue scale (VAS) from 0–10, while 10 was considered
by the investigators to be “amputation pain”. If there were no pronounced mental stress
factors, the severity of the pain was usually rated 2–3 and only rarely 5–6.
Chronic stress, but also anxiety and depression [22]
[23], lower the pain threshold and lead to a significant increase in pain. Catastrophic
thinking [24], focusing attention on the pain, negative assessments and helplessness reinforce
the pain and can cause it to become chronic [23].
Patients with pain often avoid movements that may trigger the pain, which restricts
everyday activities even more and brings about feelings of helplessness and subjection
[23].
In addition, and the available studies are in agreement on this point, chronic stress
in turn causes the inflammatory markers to rise. Results from recent studies show
this to be the case in patients with rheumatoid conditions [25], in whom a stress-induced increase in inflammatory mediators can be seen, irrespective
of their disease activity.
At the same time, patients with depression [26], social stress [27] or post-traumatic stress disorder [28] also show an increase in inflammatory markers that is unrelated to any underlying
somatic disease. Given the high psychological vulnerability in the majority of our
patients with lipoedema, a vicious circle may ensue. A vicious circle where chronic
stress and psychological symptoms intensify the pain through inflammatory mediators,
which in turn may lead to a situation of increased mental stress.
[Fig. 3] adds the psychosocial factors to the somatic aspects shown in [Fig. 2].
Fig. 3 Effects of psychosocial factors on pain perception.
To summarise, and emphasise it again at this point, lipoedema is not a mental illness.
Psychological factors do, however, play a key role in connection with the associated
complaints. It is therefore extremely important for us to be open to the complex interactions
between body and mind. This perspective makes it easier to develop effective long-term
treatment strategies. Labelling, an additional stigmatisation that many patients with
lipoedema have already experienced because of their disproportionality or their existing
obesity, is very damaging to mental health, hinders effective therapy, and should
therefore be avoided at all costs.
There are still some questions that need to be answered in the future:
Why do patients with lipoedema experience pain only in the subcutaneous fatty tissue
of the limbs (usually the legs) and not in the subcutaneous fatty tissue over the
abdomen or back? And why do treating physicians repeatedly see women with advanced
disproportionate fat distribution who do not complain of pain (by definition, lipohypertrophy)
and at the same time patients with less disproportionality but intense pain in this
adipose tissue?
Treatment of lipoedema
The key element of the therapeutic concept was the question about the complaints of
our lipoedema patients. This question alone represents a basic paradigm shift in our
view of lipoedema. The traditional approach was focussing on an – scientifically untenable
– “oedema” in lipoedema which is closely associated with “decongestion”. The crucial
questions in the new treatment concept are as follows:
Serious scientific data on the patient’s perspective do not exist. The questions were
therefore answered from the extensive clinical experience of the experts participating
in the European Lipoedema Forum, crystallising into the following key aspects:
Patients with lipoedema suffer to varying degrees of:
-
pain/other symptoms in the soft tissues of the legs or arms
-
greater psychological vulnerability, which may in turn potentiate the pain
-
a lack of self-acceptance, mainly because of today’s ideal of beauty
-
overweight or obesity with numerous attempts at dieting
-
a lack of physical exercise and fitness, especially in obese patients
Starting from this constellation of suffering, the forum participants defined the
main components of treatment ([Fig. 4]). Interdisciplinary expert groups compiled the content of the individual therapeutic
modules. The results of the working groups were then subjected to plenary sessions
in order to reach agreement and allow a consensus statement.
Fig. 4 Main pillars of the therapeutic concept.
Summaries of the reports from each working group are given in the following. We would
like to comment on some national differences. For example, physiotherapists working
in the Netherlands have greater responsibility and a wider scope of practice than
is usual for those in Germany. It may therefore not be possible for all European countries
to follow the consensus recommendations in an identical manner.
Physio- and movement therapy
Physio- and movement therapy
Managing expectations
Prior to treatment it is of great importance to know the patients’ precise expectations
and treatment goals, as well as their subjective illness beliefs.
If the patient’s expectations or convictions are unrealistic or inappropriate, it
is important that these will be discussed with the patient in order to avoid that
the treatment is starting off on the wrong foot. Begin the conversation with a mutual
exchange of expectations.
Health profile
Patients with lipoedema should receive a holistic assessment which does not just focus
on the diagnostical and medical aspects of the disease but also takes the impact on
daily functioning into account.
In order to establish this overall picture, you can draw up a patient health profile
that includes data on (repeated) clinical measurements to provide a more objective
personal history and identify specific individual needs. The International Classification
of Functioning, Disability and Health (ICF) [29] may be a useful tool for establishing this health profile and determining a detailed
picture of the patient’s problems, abilities, and goals in all areas.
The ICF model offers a fundamental framework for determining human functioning and
a classification system based on the biopsychosocial model [29]
[30]. It consists of two parts ([Fig. 5]): Part 1 describes functional ability and disability based on three components:
Fig. 5 The ICF model.
-
The physical body (body structures and functions)
-
Activities
-
Participation
Part 2 is concerned with specific contextual factors and has two components:
-
Environmental factors
-
Personal factors
All parts of the ICF model show interdependence.
In order to establish a comprehensive health profile, basic data should be recorded
from each patient with lipoedema before they start treatment. The Dutch guidelines
[31]
[32] suggest measuring the circumference of the limbs, the body mass index (BMI), abdominal
girth, and the Dutch standard of normal activity [33]. In addition, the European experts recommend recording the waist-to-height ratio
(WHtR) to determine the body fat distribution.
Depending on the individual patient’s history, clinical assessment should be supplemented
with additional tests and questionnaires e. g. on tiredness, pain, quality of life
(QoL) and stress.
Use of the ICF in combination with clinimetric tools offers the possibility of establishing
an individual health profile and drawing up an optimally personalised treatment plan.
This should lead to an improvement in function and quality of life [29]
[30]
[34]
[35]. Monitoring the measurements at regular intervals allows us to analyse treatment
progress and adapt the treatment plan as necessary.
Treatment
Physiotherapy focuses on reducing the subjective complaints and restrictions as well
as preventing the condition from becoming worse. Each treatment a session should consist
of a selection of interventions that can be combined according to the patient’s needs.
Any unnecessary modules can be left out.
1) Education
It is important for the patients to know and understand what lipoedema is and, perhaps
even more importantly, what it isn’t. It should also be made clear that lipoedema
is a chronic disease that can be negatively impacted by increasing body weight and
a lack of physical activity.
Patients should also be aware that it is their own responsibility to deal with the
lipoedema, not only physically but also mentally. As the treating physician or therapist,
it is important to realise that you can coach patients but not solve their problems.
A step-by-step approach to behavioural changes (starting with realistic goals and
slowly building upon them) and motivational interviewing may be beneficial in the
treatment of patients with lipoedema. As with the self-management of lymphoedema,
education at an early stage is crucial [36].
2) Optimising daily functioning and physical capacity
In many cases, patients with lipoedema have a lower level of activity as well as diminished
physical capacity, including reduced muscle strength [37]. Graded Activity is a structured treatment that is based on cognitive behavioural
therapy combined with physiologic principles of training. The goal of gradual increased
activity is to augment everyday functional ability; the key training elements are
building up muscle strength and aerobic exercises [38]
[39]
[40].
The programme starts by determining the baseline based on measurements of pain, activities
of daily living (ADLs), physical performance and psychological status. It is incrementally
increased, which ensures greater patient compliance [41]. The method aims to change behaviour in such a way as to increase the patient’s
level of activity irrespective of their complaints. Gradual increase in activity improves
physical function without increasing pain levels. In a subgroup of patients, Graded
Activity decreases pain levels in the long run [42] ([Fig. 6]).
Fig. 6 Stepwise increase in physical activity.
The key element of this programme is the setting of personal goals, which can be used
as the base for determining patient-appropriate physical activities, always bearing
in mind the necessity of a sustainable healthy lifestyle.
The importance of physical activity cannot be overstated. As mentioned previously,
inflammatory processes in the adipose tissue are the most likely cause of the somatic
base of the pain. It has recently been shown that regular physical training leads
to a decrease in proinflammatory adipokines and macrophages [43]. In addition, physical exercise increases blood flow and thus counteracts the hypoxia
in the adipose tissues [44].
Physical activity reduces the inflammatory processes in fatty tissue and contributes
considerably to pain relief.
[Fig. 7] illustrates the effects of physical activity on the inflammatory processes in adipose
tissue that we mentioned above.
Fig. 7 The effects of physical activity on inflammatory processes in adipose tissue.
Exercise can, however, do even more. Physical training acts like a natural antidepressant
[45]. This is of great relevance in patients with lipoedema, most of whom have an increased
psychological vulnerability or suffer from chronic mental stress. Sporting activity
in conjunction with basic psychotherapy is more effective in persons with a depressive
tendency than a more sophisticated psychotherapy alone [46].
3) Manual lymphatic drainage
Manual lymphatic drainage (MLD) has no effect on the lipoedema itself, as it can only
influence oedema and not the distribution of fat or the size of fat cells.
Lipoedema neither includes any relevant oedema nor impairs the lymphatic system [1]
[120]. Furthermore, the efficacy of MLD has not been demonstrated in this condition [47]
[48]. Perceived pain reduction through the application of MLD may be helpful in the initial
stages of treatment. If so chosen, it is essential to combine this treatment with
adequate information for the patient about the neuro-physiology of pain (as explained
above). In addition this kind of therapy should be restricted to the maximum of one
month because it is of greatest importance to preserve the patient from dependency
on the therapist. The widespread and over years applied German practice of regular
weekly MLD has no scientific basis whatsoever and therefore, from the medical and
economical point of view, it is more than questionable.
4) Self-management
Following the chronic care model (CCM) [49], patients should be given a leading role in their treatment in order to achieve
behavioural changes.
Self-efficacy, the extent of one’s belief in one’s own ability to complete tasks and
to reach goals, is one of the pillars of self-management [50].
These relationships are described in depth in the section on “Self-management”. As
self-management is so important, the consensus considers it a mainstay of treatment
in its own right.
Compression therapy
Compression therapy has always been and still is an important element of Best Practice
in the treatment of patients with lipoedema. Nevertheless – and this point is crucial
to our understanding – the change in the pathophysiological view of lipoedema presented
above alters the indication for wearing compression stockings. The basis for prescribing
compression therapy is no longer the fictitious “oedema in lipoedema” but rather the
frequently demonstrated anti-inflammatory effect in the subcutaneous tissue. Currently,
no data exist on the effects of compression in lipoedema. However, studies in phlebology
and sports medicine have shown that compression has an impressive effect on the inflammatory
processes in subcutaneous tissue [51]
[52]. Confocal laser scanning microscopy has been used to show a significant reduction
in pro-inflammatory cytokines and a simultaneous rise in anti-inflammatory mediators
in the compressed tissue of patients with venous disease [53]. Ligi et al. highlighted these effects in their review entitled “Inflammation and
compression: the state of art” [54]. Beidler et al. likewise demonstrated a decrease in proinflammatory cytokines and
macrophages after four weeks’ compression therapy in patients with chronic venous
insufficiency [55]. Other studies have reported an improvement in the subcutaneous microcirculation
from wearing compression stockings [56]
[57]. One noteworthy study on healthy industrial workers and surgical nurses (who spend
most of their working life on their feet, standing and walking) showed that wearing
compression stockings resulted in a significant “reduction of oxidative stress”, a
finding that also points to improved microcirculation in the subcutaneous tissues
[58].
All the studies that we know and have mentioned previously are concerned with compression
of the legs in patients or healthy volunteers when standing or walking. There is much
to be said for considering the positive effects of compression as synergistic with
the effects of active movement (when standing or walking). Both these therapeutic
options have an anti-inflammatory effect and both of them have a positive impact on
the hypoxia factor. We therefore consider wearing compression sleeves on the arms
(for lipoedema) to be less meaningful. We see the synergistic effects of compression
and movement particularly with physical activity in water. So far, we have not come
across a single patient with lipoedema who has said that her symptoms have not improved
with swimming or water aerobics.
Consequently, the central importance of compression now lies in the reduction of pain
and other symptoms due to inflammatory processes. It seems to us that getting this
point across to the patient is a key task in doctor-patient communication.
In addition, discussions with the patient should emphasise the delusory nature of
the much-cherished hope that compression will reduce the amount of fatty tissue. Nor
does compression prevent an increase in fat in the legs if the patient puts on weight.
Depending on the clinical picture, custom-made circular-knit or flat-knit compression
garments can be used. Flat knit is clearly to be preferred, not only because it is
more comfortable to wear (and hence encourages compliance) but also because the Forum
participants have observed that it is more effective. There is no alternative to flat-knit
stockings in severely obese patients with lipoedema who have deep skin folds in their
fat lobes.
Besides providing symptomatic relief, compression also supports the soft tissues,
reduces the mechanical impairment of movement from skin lobes rubbing against each
other, and improves mobility [47]
[48].
The patient’s acceptance of compression as a necessary tool to reduce the symptoms
of lipoedema increases with appropriate patient education. Aesthetic criteria with
respect to the quality, colour, and pattern of the material, as well as the contouring
effects of the compression can also increase patient compliance.
The extent of the lipoedema in the individual case determines whether compression
pantyhose, leggings, Capri length compression garments or below knee stockings are
required and which compression class is necessary; the decision is always personalised
accordingly. The success of compression therapy in the treatment of lipoedema can
be established with appropriate tools for measuring biometric, psychological, and
social parameters.
Psychosocial therapy
Introductory remarks
The crucial question to ask is: What do women with lipoedema really suffer from? If
we keep the relevant problems and symptoms in focus, we can identify those patients
who are suffering from severe mental stress. This is particularly relevant for patients
with lipoedema, as mental health issues and pain perception are closely related [59].
The treatment options and supportive services are as many and varied as the psychosocial
problems of our patients with lipoedema. The one psychosocial or psychotherapeutic
option to fit all patients therefore does not exist. But there are general factors
that significantly affect all patients, including those with lipoedema. And, at the
same time, there are “lipoedema-specific” issues that can be found in the great majority
of patients with this condition.
Nearly all of our patients with lipoedema express difficulties in accepting their
own bodies, especially the shape of their legs. In this respect, the media has an
enormous influence on self-perception. The greater a woman’s media consumption (a
media consumtion that almost exclusively promotes a slim, long-legged beauty ideal),
the greater her dissatisfaction with her own appearance and the more she craves a
slim body [60]. The beauty ideal amongst teenage and young adult women is already far below the
normal weight for their own age groups [61]. But the media suggest that this ideal can be achieved. And this achievability puts
pressure particularly on those girls and women who think that they have to conform
to this ideal and may set off a vicious circle of dieting and subsequent weight gain.
Furthermore, psychological assessments at the Foeldi Clinic found a clearly higher
proportion of patients with lipoedema who reported physical or sexual abuse in comparison
with the general population [62], and these experiences also impact body awareness and increase the risk of chronic
pain [63].
The consensus discussions also identified other problem areas in our patients with
lipoedema, in particular a diminished feeling of self-esteem, difficulties in coping
with stress and, of course, the typical lipoedema pain whose perception depends so
greatly on the patient’s mental health.
Diagnostic screening
But how can we identify patients with lipoedema who need psychotherapy or other psychosocial
services? Since it is usually difficult to make an appointment for psychological assessment
quickly, apart from exceptional cases, the European Lipoedema Forum consensus proposed
the use of questionnaires to encompass the most important psychological symptoms.
All healthcare professionals should be able to use these questionnaires to screen
for the most common mental health issues or problem areas in patients with lipoedema.
If the scores are remarkable, the patient should be referred to a licensed psychotherapist
or counselling service for a psychological evaluation. Further treatment can be planned
and the necessary services initiated.
Until such time when a validated lipoedema-specific questionnaire becomes available,
questionnaires that have already been validated and proved their worth in both clinical
practice and research should be used. Table 1 in the Annexe gives an overview and proposes appropriate tools.
Screening does not, of course, replace a full mental health assessment. However, the
use of screening questionnaire provides the outpatient physician with an indication
of which patients with lipoedema must definitely be referred for further psychological
assessment. A comprehensive view of the patient’s symptoms is essential, especially
when the pain intensity score is high.
Therapeutic approach
Empathy
Taking all the therapeutic options into account, the relationship between the patient
and the treating physician or therapist has an important impact. The ideal relationship
is based on empathy and an understanding of what the patient is going through; it
acknowledges the burden of suffering felt by the patient but also strengthens the
patient’s resources to cope [64].
Education
Information and education on how pain develops in lipoedema may start to modulate
the patient’s perception of pain. There is evidence that education on the neuronal
basis of pain has a positive effect in various types of pain [65]
[66]
[67]. When patients attribute severe pain entirely to severe tissue damage, they will
be more likely to try to protect themselves and possibly be even more sensitive to
pain. A comprehensive understanding of pain, seeing it also as a dysregulated reaction
or an overreaction of the stress system, allows patients with lipoedema to develop
further strategies for pain relief by relieving stress; they can then employ these
strategies themselves.
Psychotherapy
If anxiety, depression or severe psychological distress can be lessened by psychotherapeutic
intervention, it has a positive effect in reducing pain [68]
[79].
Non-disorder-specific interventions include mindfulness techniques or acceptance and
commitment therapy (ACT), based on mindfulness, which improve mental well-being and
increase psychological flexibility.
According to the German Association for Psychiatry, Psychotherapy and Psychosomatics
treatment guideline, evidence-based disorder-specific psychotherapy may be used when
there is a psychological disorder such as depression, an eating disorder or an anxiety
state [70].
Additional procedures: Psychotherapy in patients with lipoedema seems to reduce pain
more effectively when used in combination with physically oriented techniques such
as embodiment-focused procedures. This may be attributed to a calming effect on the
stress system taking place in addition to the effect of the words at the neuronal
level. Under the new ICD-11 terminology, much of the psychological vulnerability found
in patients with lipoedema can be described as a stress-related disorder [64]. However, this initial experience needs to be reinforced by the results of research.
Self-help groups
Experiencing self-efficacy and optimism as well as social support – from positive
like-minded people in a self-help group – increases resilience. According to a review
article by Faerber and Rosendahl, well-developed resilience (i. e. the psychological
power of resistance) is associated with better mental health in people with physical
health problems [71]. This aspect is addressed in greater depth in the section of “Self-management”.
Weight management
Obesity is often progressiv, usually not lipoedema. If obesity is progressiv, lipoedema
can get worse. In tertiary referral centres, 80–88 % of patients with lipoedema are
obese [72]
[73]
[74]. In order to treat lipoedema effectively, obesity therefore must be focused on.
Weight management therefore plays a major role in the treatment concept. The recommendation
for conservative management or additional surgical treatment depends on the patient’s
weight and the patient’s wishes. Nevertheless, the basic precepts of conservative
treatment (weight management) must still be followed after surgery.
Recommended conservative approach
There has also been a change in perspective regarding weight management. The European
Lipoedema Forum consensus does not put weight loss per se as the first concern for
the moderately obese patient. Instead, both therapist and patient should focus on
achieving a state of well-being and fitness.
Weight management is absolutely mandatory whenever severe obesity-related disease
already exists or threatens to develop.
The European expert panel has drafted a nutritional medicine concept:
1. Short-term diets must be avoided by all means. They almost always fail and often
result in a yo-yo effect [75]
[76]
[77]
[78]
[79]
[80]
[81]
[82]
[83]. Instead, patients should be educated as soon as possible on how to change their
eating habits towards an individually appropriate and adapted healthy diet that they
can follow for the rest of their lives.
2. The concept of energy balance has to be accepted. This must not imply mere calorie
counting since it is by now evident that the different nutrients have different metabolic
effects – “a calorie is not a calorie” [84] Instead, emphasis must be put on intake and expenditure of energy.
3. Patients should be informed about the pro-and anti-inflammatory effects of their
dietary habits and food choices. In this context the reduction of hyperinsulinemia
and the reduction of insulin resistance, which is present in most cases with additional
visceral obesity, is of great importance for lipoedema patients. Hyperinsulinemia
and insulin resistance are associated with visceral obesity but are also extremely
important for patients with lipoedema [85]. Hyperinsulinemia is the main cause of chronic inflammation; the vicious circle
of obesity and gradually increasing hyperinsulinemia leads to a further increase in
adipose tissue [86]
[87].
The following graph by G. Faerber illustrates the complex relationships ([Fig. 8]).
Fig. 8 Metabolism of adipose tissue expansion.
The following measures to reduce hyperinsulinemia should be recommended:
-
Sufficiently long intervals between meals. Recommended are four to six hours during
daytime, and at least twelve hours during the night [90]
[91]
[92]
-
Strict avoidance of constant “grazing” (many small meals spread throughout the day),
especially eating sweets and other snacks that raise blood glucose levels.
-
Reduction of foods containing refined carbohydrates or sugar. The fewer of refined
carbs consumed the better [85]
[93]
[94].
-
Preference for “real food” instead of processed foods.
-
Consumption of healthy fats (olive oil, wild oily caught fish, pasture raised meat
and milk products and avoidance of industrial trans-fats) [95]
[96]
[97].
4. For long term weight stabilisation support and coaching are mandatory during and
after nutrition therapy in order to prevent relapses [98].
Recommended surgical approach
-
Bariatric surgery is recommended for patients with lipoedema and a BMI of ≥ 40 kg/m2.
-
Bariatric surgery may be considered for patients with lipoedema and a BMI of 35–40 kg/m2.
It has been shown that bariatric surgery is the most effective treatment for losing
weight. A comprehensive meta-analysis with 25 prospective studies showed significantly
better weight loss after surgical procedures, irrespective of the type of operation,
the duration of follow-up care or the severity of the obesity [99]. The BMI threshold for recommending obesity surgery is based on historical developments
and is in line with the European and American interdisciplinary guidelines for bariatric
surgery [100]
[101]. Preoperative examination and preparation for bariatric surgery should be carried
out in accordance with the European guidelines [100]. The bariatric surgery itself should also be carried out within the framework of
this interdisciplinary guideline. When patients have a BMI of 35–40 kg/m2, the WHtR should also be taken into consideration to identify overproportional fat
distribution in patients with lipoedema. Patients with lipoedema and a WHtR < 0.5
probably do not have a metabolic risk, so that bariatric surgery is not absolutely
necessary [102].
Liposuction
As mentioned earlier, the Federal Joint Committee (G-BA) in Germany considers that
liposuction has the potential to be an alternative treatment option for lipoedema.
On the basis of the available scientific findings, however, the G-BA does not consider
that it is yet possible to make a definitive decision on whether the statutory health
insurance should bear the costs of this operation [103]. This stance has also been largely confirmed by the Federal Social Court in Germany
[104]. Nevertheless, as explained above, the G-BA followed the wishes of the German Minister
of Health. In Germany patients with lipoedema in “so-called stage 3” may be treated
by liposuction at the expense of the health insurance.
In the view of the European Lipoedema Forum experts, the benefits of liposuction depend
strongly on a clearly defined patient selection. Not every patient with lipoedema
would benefit from liposuction. In order for patients to really benefit from this
procedure, the participants agreed on the following criteria.
Liposuction may be considered in patients with lipoedema if:
-
The symptoms persist despite at least 12 months of conservative treatment as presented
above
-
The patient has considerable functional disabilities (e. g. restricted mobility)
-
The patient’s weight has been stable for at least 12 months. This reduces the risk
of the effects of liposuction being cancelled out by postoperative weight gain (or
by a yo-yo effect after weight loss) [5].
-
A preoperative psychological assessment is available. This assessment should rule
out any eating disorders or relevant mental health issues that might stand in the
way of sustained treatment success.
Liposuction is not a treatment option in patients with a BMI > 35 kg/m2 and simultaneous central obesity (WHtR > 0.5). If there is no central obesity, liposuction
can also be carried out in patients with a higher BMI – although this constellation
occurs extremely rarely.
A Lipoedema/Liposuction Task Force comprising members of the executive committee of
the German Society of Phlebology (DGP) and the German Society of Lymphology (DGL)
has issued a statement to the G-BA, in which they include criteria that should be
met by physicians treating lipoedema. According to this Task Force, the diagnosis
of lipoedema (and lipolymphoedema) is frequently found to be a mistaken diagnosis
on referral. For this reason, the physician referring patients for liposuction should
also have an additional lymphology or phlebology qualification. A further statement
from the Task Force says “If the doctors who have been treating the patient for six
months do not have such qualifications, the diagnosis should be confirmed by an appropriately
qualified physician who does not himself/herself perform liposuction” [105].
It is obvious that clear requirements on the qualification of surgeons also have to
be formulated. To ensure the necessary quality standards, we propose specialist certification
for doctors performing liposuction, similar to that which in Germany already exists
for bariatric surgeons [106]. Patients will then have the possibility of finding a surgeon who meets the defined
quality criteria.
Self-management
Successful self-management is necessary for patients with lipoedema to reduce their
symptoms in the long term. The available studies on self-management are very consistent:
good self-management improves the state of health, everyday functioning, and the quality
of life in patients with chronic diseases [107]
[108]. We now regularly see patients with lipoedema who have achieved a considerable long-term
reduction in their symptoms with successful strategies to improve their self-esteem,
and some even describe themselves as symptom-free.
As experts, we have high expectations of our patients with lipoedema – old and relatively
unhealthy habits should be relinquished as soon as possible and replaced by new healthier
self-management strategies. Following the chronic care model (CCM), patients should
be given a leading role in this treatment concept [49]
[109].
Nevertheless, the feasibility of establishing new habits is overestimated. Old habits
die hard and change has nothing to do with a low IQ or “laziness” but depends on the
basic principles of motivation, the “Maths of Motivation” so to speak.
Neurobiology offers a basic insight as to why people adhere to unhealthy habits: unfavourable
behaviour often reduces stress quickly and easily. From the neurobiological aspect,
binge eating can be viewed as a coping method for frustration which lowers stress
levels in the short term [110] – and which the brain interprets as a reward.
When we tell our patients about these relations, they are likely to offer confirmation:
“Yes, stress eating makes me feel better in the short term, but it hardly helps in
the long run, does it!”. In motivational interviews, the patients themselves start
to talk about the disadvantages of their old automatic behaviour and/or the advantages
of the new favourable healthier behaviour [111]
[112].
Many treatment models wrongly assume that imparting information and education alone
are sufficient for patients to change their patterns of behaviour. As practitioners,
however, we have found that even the most excellent advice often has hardly any effect
in changing behaviour. When we give our patients direct advice, they are most likely
to reply in a “Yes, but…” mode and explain why they themselves are unable to change
things. This even tends to reinforce their old habits. The more we, as treating physicians
or therapists, show empathy [113] and the less we (knowingly or unconsciously) comment on behaviour that produces
guilt or shame, or the less we try to shock the patient into changing (“If you go
on like this, you’ll be dead within five years.”), the more the patient can get involved
with the new approach [114].
Patients often fail to meet their own demands. If they do not reach a set goal (e. g.
more physical activity with compression therapy three times a week) they often give
up totally.
Studies have shown, however, that if you deviate from the new habit on a single day,
it has no measurable influence on your long-term success. It depends on the average
speed, not the top speed. Our advice has more effect when we use the inclusive “we”
and treat our patients on equal footing. We can therefore say “None of us eats only
healthy meals every single day, and that really isn’t a problem. But studies have
shown that it isn’t a good idea for us to fail in our good intentions twice in one
day. If we eat a healthy meal after having an unhealthy one, we’re back on track.
We don’t have to be perfect. Good enough is good enough.”
And similarly, with respect to physical activity “None of us takes enough exercise
every day...” [111].
Not having to feel ashamed or guilty if something does not immediately go according
to plan unburdens the patient, reduces stress, and increases the likelihood of establishing
new healthier habits.
The “Maths of Motivation”
Motivation is an essential ingredient for changing behaviour. Any amount of knowledge
multiplied by zero motivation will not change a thing. We can also look at this as
a motivational matrix: motivation = importance (of the goal) × self-efficacy (belief
in one’s own ability to achieve the goal), as shown in [Fig. 9].
Fig. 9 The “Maths of Motivation”.
Take a patient with lipoedema who is hardly moving about on a daily basis due to her
complaints. Allow her to rate each self-management strategy that she should use (in
this case regular physical exercise under compression) on a scale of 0 to 10:
-
How important is it for you to use the self-management strategy of X in your everyday
life (e. g. on a scale of 0 to 10, how important is it for you to exercise with compression
for half-an-hour, three times a week from now on)? and
-
How much do you trust your own ability to carry out this strategy (e. g. how do you
estimate the chances of your being able to exercise for half an hour, three times
a week? And what sort of exercise would you enjoy the most)?
If the goal is important to the patient, and she is sure that she can achieve it,
then she is already highly motivated (green area). If the patient’s score lands in
the other three fields, then we need to use motivational interviewing.
If a patient says that her goal is not important – even though it is greatly relevant
to her health – and rates it, for example, as 3 out of 10, our instinct is to ask
“Why only a three? I’ve told you about the advantages of X several times!” Instead
of why, we can ask in a more motivational manner, “What (already) makes it a three?”
Then she will think about it and explain why – she is now called upon to be the expert.
The patient now does the work, not the treating physician or therapist. And then we
can ask, “What do you need to make it a four or a five?” (Give her enough time to
think it over). “Is there anyone who could help you in any way?” [111], “Would you like me to tell you what I know about X?”. Wait until she answers in
the affirmative. Don’t give any unsolicited information but allow the patient to make
active requests. Studies have shown that the effects of such motivational interviews
last for a long time after the end of treatment [112].
In summary, the best way for us to support our patients with lipoedema is to help
them develop new self-management strategies by meeting them on an equal footing –
as experts on themselves.
Final comments
Exactly two years have passed since part 1 of the article series on the myths and
facts of lipedema appeared. The resulting and urgently needed paradigm shift in lipedema
has been gaining ever greater acceptance since then. Originating from the largest
lymphology clinic worldwide, the Foeldi Clinic [115], large sections of the executive committees of the professional associations in
Germany “responsible” for lipoedema have adopted this altered perspective. The previously
mentioned Lipoedema/Liposuction Task Force with committee members from the German
Society of Phlebology (DGP) and the German Society of Lymphology (DGL) has issued
the Statement: “The view that lipoedema includes oedema has been abandoned” [105]. Many members of the executive committee of the Society of German-speaking Lymphologists
(GDL) and of the DGL have actively been involved in the European Lipoedema Forum and
promoted the altered perspective on this affliction.
The European Lipoedema Forum, with 25 renowned experts from seven European countries,
has developed the “European Best Practice of Lipoedema” outlined here and thus also
supports the overdue paradigm shift in lipoedema. After reading the Consensus, numerous
other national and international experts and opinion leaders have also pledged their
support for the change of perspective in lipoedema e.g. Dr. M. Oberlin, General Secretary
of the Society of German-Speaking Lymphologists and Prof. L. Perbeck, President of
the Swedish Society (Svensk Förening för Lymfologi, SFL). Prof. H. Brorson, former
President of the International Society of Lymphology (ISL), and also a board member
of the Swedish Society (SFL) is certainly one of the internationally most experienced
and well-known surgeons for liposuction. In a letter to the lead author, Prof. Brorson
expressly supports the paradigm shift and supports the consensus. Leading Belgian
lymphologists like Prof. N. Devoogdt, board member of the Belgian society (OEDEMA.BE)
and Dr. S. Thomis, head of the lymphedema centre Leuven are backing the consensus
and will be part of the European expert group. Together with the collegues from Sweden
the European Lipoedema Forum now consist of experts from 9 European countries. Lymphological
societies and national lymphoedema schools from other countries such as Sweden or
Australia have linked the series of articles on the myths and facts of lipoedema to
their websites and draw attention to it in newsletters [116]
[117]. Guenter Klose, founder and CEO of Klose Training in Denver/Colorado, one of the
largest and most renowned training institutes for lymphoedema therapy in the world,
also is greeting the new perspective on lipoedema and will integrate the new treatment
concept into its training catalogue. Thereby it is hoped that the new way of seeing
and treating lipoedema will also become established in the USA. So far, the topic
has been dominated exclusively by financially strong patient organizations. Last but
not least – at the Congress of the German Society of Phlebology (DPG) in September
2020 in Leipzig and four weeks later at the World Lymphology Congress (International
Lymphoedema Framework, ILF) in Copenhagen, the paradigm shift of lipoedema will be
one of the central issues [118].
As always when things change, there is resistance to the changes. In a notable article
published in LymphForsch in June 2019, the chairman of the professional association
of lymphologists in Germany acknowledged the effects of obesity on lipoedema. Since
the nineties, he has held “the notion that, in the long run, lipoedema and lipohypertrophy
are primarily a problem of weight” [119]. The great influence of psychological vulnerability is also not contested in this
LymphForsch article and lipoedema is “without doubt a psychosomatic illness” [119].
But at the same time, the author is vehement in his response to the first four parts
of the present series, insisting that “Lipoedema is a condition regularly accompanied
by oedema” [119]. This apodictic statement not only conflicts with the European Lipoedema Forum experts’
consensus but also with the Task Force of phlebologists and lymphologists, which has
established that “Neither clinical examinations nor imaging procedures such as CT,
MRI or high-resolution soft tissue ultrasonography have provided any evidence of oedema
in “pure lipoedema” within the past decades. In addition, histological examinations
have never found a relevant “accumulation of fluid” in the adipose tissue” [105]. The chairman of the professional association ignores these facts and bases his
divergent view on personal experience with ultrasound scanning, in which “apart from
isolated exceptions”, he has “always” found oedema in “women with a regional increase
in adipose tissue” [119]. This personal experience of the LymphForsch author has, however, never been published
and therefore cannot be verified! A recent multicentre registry study published in
2018 by Hirsch and co-workers stands in clear opposition to this personal ultrasound
experience. This article, which is well-worth reading, concerns high resolution ultrasonography
in lipoedema and the authors conclude from their findings that “The accumulation of
fluid could not be detected in patients with “painful lipohypertrophy”, which means
that the designation of lipoedema for this condition is misleading and should be reconsidered”
[120].
In line with his traditional take on lipoedema, “freedom from oedema” is one of the
treatment goals of the chair of the professional association. He therefore considers
MLD to be as equally important as the other components of complete decongestive therapy
(CDT).
This indifference to scientific facts is also reflected in his personal approach to
obesity surgery: bariatric medicine “is the declaration of surrender of nutritional
medicine” [119], and furthermore, “Weight loss is achieved at the expense of mutilation of the digestive
tract, an enforced lifelong alteration of dietary habits, and even unappeasable hunger”
[119]. Greater misinformation on the subject is hardly conceivable. This declaration by
the LymphForsch author is not only factually incorrect, it also contradicts the consistent
findings of the available studies mentioned previously – studies that show a rare
unanimity in the largely sustainable success of this therapeutic option [99]
[121]
[122]
[123]
[124]
[125]
[126]
[127]
[128]
[129]. The chairman of the lymphologists’ association also ignores the experience gathered
since 2007 by colleagues at the Foeldi Clinic (doctors, therapists, nurses and psychologists)
working with patients who have undergone bariatric surgery. For 12 years, this specialist
clinic has offered a surgical procedure to numerous patients with a BMI > 40 kg/m2 as part of its multimodal obesity programme. After a bariatric surgery, patients
with lipoedema experience considerable relief of the typical complaints (many even
say they are symptom-free), improved mobility, an improvement in other obesity-related
diseases and, last but not least, often a dramatic improvement in their quality of
life. These findings are currently being evaluated as part of a doctoral dissertation
at the University Hospital Freiburg, Germany. We already have the preliminary (confirmatory)
results, which will be presented at the German Lymphology Congress 2019 in Bad Krozingen
[4].
Ultimately, however, this adherence to "the old lore" must also be understood as concern,
as concern about change, as concern that the established doctrines of many decades
are suddenly proving to be wrong. It is always painful to question your own beliefs
and position. It is also associated with a fear of loss: a loss of acquired expertise,
a loss of familiar certitude, a loss of control.
Patients who have lipoedema face a completely different concern when confronted with
this change in the perspective of their disease. At a time when people are stigmatised
and discriminated against because of being overweight or because of the shape of their
legs, it is easier to believe that a medical condition is responsible for all the
past adversity. Instead, it would be more helpful to look into the complex background
of lipoedema. Only at first glance is it easier to believe in the “accumulation of
fluid in the body”, in an “oedema”, and receive MLD sessions rather than undergo regular
enforced physical activity under compression. Only at first glance is it easier to
have fat removed from the legs by liposuction than to deal with one’s own – biographically
founded – psychological vulnerability or problems of self-acceptance.
But even so, we are now seeing patients with lipoedema who are changing their way
of thinking – away from the passive attitude of being a “victim” – to an active, positive
and self-aware approach to the condition, and hence to themselves. Natalie Stark and
her lipoedema podcast [130] and Isabel Garcia with her courageous book “Lipödem – ich bin mehr als meine Beine”
[Lipoedema – I am more than just my legs] [131] serve as good examples of a differentiated approach to their own medical conditions.
Conclusions
In our opinion, there is no alternative to the paradigm shift in lipoedema! The view
is progressively gaining acceptance on both a national and an international level.
Our hope is that the opportunities inherent in this paradigm shift will be seen more
and more, despite the concerns of some treating physicians and patients. The change
in perspective on lipoedema that we have described in this article brings the patient’s
real symptoms to the forefront. This focus allows more comprehensive and therefore
better and more sustainable treatment than focusing on non-existent oedema and its
decongestion.
Physicians and therapists treating outpatients with lipoedema should gain an idea
of the direction in which to guide and accompany their patients from the treatment
strategy presented above. As experts in compression therapy, physical activity, and
fitness, physiotherapists have a major role in our treatment concept.
For specialist lymphology clinics, this paradigm shift means a significant change
from their previous therapeutic approach. If they have been treating patients with
lipoedema virtually in the same way as patients with lymphoedema, using CDT, the new
perspective requires clearly more differentiated treatment. The European Center of
Lymphology, the Foeldi Clinic in Hinterzarten, has therefore radically altered its
treatment concept for patients with lipoedema and adapted it to the patient’s individual
symptoms [115]. Nevertheless – and this also needs to be emphasised – many of the patients referred
to the specialist clinic with a diagnosis of lipoedema also suffer from two further
diseases in need of treatment: obesity and obesity-related lymphoedema. Treatment
of the obesity and CDT are, of course, still the mainstays of treatment for these
two conditions – but they are by no means enough to treat the complex disease of lipoedema
adequately.
Our greatest desire is to make this absolutely clear!
