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Lipoedema – and what you ought to know
you will find out everything that you ought to know about lipoedema:
What is lipoedema?
What can I do about it?
How does it make its presence felt?
What are the most frequent symptoms?
What therapy methods are available?
What should the affected patient be aware of?
leads secondarily to a chronic lymph blockage. The fat lobules and fat cells
are anchored in the connective tissue where they are surrounded by very
small lymphatic and blood vessels. An increase in the fat cells gradually
results in the finest lymphatic vessels being pressed shut. In addition,
oestrogens (female sex hormones) cause an increase in the storage of fluid
in the connective tissue and a loosening of this tissue.
One side-effect of lipoedema is therefore a chronic lymph blockage in the
dependent parts of the body and the storage of fluid in a very loose
connective tissue. This explains the pains that regularly occur.
Lipedema seems to
affect all races
heaviness in the legs
This is caused by the weight of the increased adipose tissue and the amount
of accumulated tissue fluid.
Swollen legs (orthostatic syndrome)
It is mostly during long periods of standing and/or sitting that the
accumulation of fluids in the legs increases. The result is a swelling,
frequently accompanied by a tendency to swell in the (otherwise not
affected) feet. People affected by this often say that they have trouble
putting their shoes on in the afternoon.
Orange skin phenomenon and cellulitis
Caused by the special structure of the connective tissue and the loosening
of this tissue.
Increase in the occurrence of bruises (haematomas) in the affected parts of
the body (even at the slightest inducement)
The reasons for this are:- pressure on the blood-vessels by the fat cells; a
lack of anchoring of the small capillaries in the connective tissue, which
results in them tearing when affected by the pull of gravity.
Considerable pain in the legs; painful sensitivity to touch
The continued development (chronification) of the lymph blockage leads to a
hardening of the tissue (induration), which can be extremely sensitive to
touch and very painful.
Early occurrence of degenerative changes in the joints and
the knee (because of wrongly placed stress and excess weight).
Function of arteries, veins, and lymphatic vessels
red = arteries
blue = veins
yellow = lymphatic vessels
Blood is pumped along the arteries right down to the big toe. 90% of the
blood flows back to the heart through the veins.
The remaining 10% is carried back along the second return flow system, the
lymphatic vessels, to the main circulatory system.
fluid is absorbed from the lymphatic vessels by small pores and pumped
Constriction of the lymphatic vessels
Constriction of the lymphatic vessels by an increased fat deposit. The
return flow of the lymphatic vessels is thus blocked.
Classification of the lipoedema
Type Ia: without pain
Type Ib: with pain
Increase of the adipose tissue in the region of the pelvis and the
backside (jodhpurs phenomenon)
Type IIa: without pain
Type IIb: with pain
The lipoedema goes as far down as the knees
Type IIIa: without pain
Type IIIb: with pain
Marked clinical picture of a lipoedema from the hips down to the ankle
(Suaven trousers phenomenon)
Type IVa: without pain
Type IVb: with pain
Special particularity: the arms are affected.
Type Va: without pain
Type Vb: with pain
Special particularity: restricted to the lower leg
the types are possible.
Stages of lymphatic oedema
oedema, which appears secondarily in lipoedema, i.e. as the consequence of
the increase of adipose tissue, is frequently divided up into 4 degrees of
severity in medical literature (see below):
depressed, and is spontaneously reversible. Is apparent after physical
strain or at the end of the day, and has gone again after a night’s rest.
depressed, and is reversible after treatment. Complications such as eczema
and erysipelas frequent. Without therapy is less severe in the morning, but
is still detectable.
tissue hardened (fibrosclerosis), cannot be depressed. Can only be improved,
but even after therapy damage to the connective tissue still present.
Irreversible oedema, elephantiasis; complications up to malignant
Presence of superficial varicose veins
Of the blood that is pumped by the heart along the arteries to the legs
right down to the big toe, 90 % is transported back to the heart in the
veins. However, nothing can flow of its own accord against the pull of
gravity, i.e. upwards. The blood must be pumped upwards actively. This is
done with every movement of the legs, with every stride. That is why there
are flaps in the big veins at short intervals. The venous flaps work in the
same way as a valve and only allow the blood to flow upwards. These flaps
frequently get damaged or even destroyed in the event of a thrombosis. In a
genetic weakness of the connective tissue the veins frequently stretch in
the course of years or decades to such an extent that the venous flaps can
no longer close and the blood flows back into the leg again. This is helped
by factors such as professions involving sitting or standing, pregnancy,
hormone treatment, extreme overweight, and heavy physical labour (especially
in a hot environment). The veins which expand because of this are called
Damage to the deep-lying venous system
It can however also affect the deep-lying venous system, which is as a whole
much more important for the circulation and whose transport capacity is four
times as great as that of the superficial system. Because of the pressure of
the column of blood in the varicose veins or in the deep-lying veins, fluid
and/or solid substances are passed into the tissue (“interstitial space”).
This fluid is usually transported back to the heart along the lymphatic
vessels. The remaining 10 % is filtered off in the system of the capillaries
as an albumin-enriched clear liquid which is called lymph.
Because of the increase in the weight of the lymphatic fluid an even greater
strain is placed on the transport capacity of the lymphatic vessels, which
are already being pressed shut, and they swell. For this reason a
phlebological examination of the venous system must also be performed as a
matter of course in patients with lipoedema, since varicose veins can be
both avoided and also well treated.
Great physical strain
An increase in the weight of the lymphatic fluid can also occur as the
result of too much physical activity. Here, of course, the limits vary
according to the individual. With the increase in the demand for oxygen and
energy by the muscular system of the legs during generally unusual physical
exertion, the heart has to pump more blood into the leg per time unit, and
the cardiac output rises. 10% of this accumulates in principle as lymphatic
fluid; because of this the strain on the lymphatic system is increased. Some
patients report an increase of the pains after stimulating drinks such as
coffee, coke, tea, wine, or sparkling wine. Caffeine and alcohol stimulate
the microcirculation in the capillaries, thus causing an increase in the
demands on the lymphatic system.
Of all the possible complications, the ones
to be named first and foremost are the diseases caused by wear and tear of
the joints (preferably of the lumbar vertebrae and of the pelvic, knee, and
A second complication is the development of lymphatic oedemas. Especially in
stage III of the lipoedema there is a disorder of the lymphatic flow which
is due to the increasing stenosis of the lymphatic vessels by the sudden
growth of the adipose tissue. At a more advanced stage of the disease
large-sized lymphatic oedemas can occur in addition to lipoedema. In
contrast to pure lymphatic oedemas, which usually bear different
characteristics on both sides, the development of a lymphatic oedema in the
course of a lipoedema disease is always
Increase in weight! In particular – as stated at the beginning – psychically
depressive factors can frequently cause an increase in weight in lipoedema.
Because of this the risk of additional complications, such as diseases
caused by wear and tear of the joints or the development of a lymphatic
oedema, is dramatically increased.
possibilities are restricted
1. Diets and fasting
Lipoedema is not caused by nutrition, and therefore can not be influenced by
diets or fasting! Patients frequently suffer from a severe loss of their
self-esteem. Only too often they are told that their disease is the result
of the wrong nutrition. They hear this not only from their family and their
private/professional sphere, but unfortunately also from inexpert
paediatricians and general practitioners. Because of this massive external
influence, many people genuinely believe in the end that the symptoms are
the result of the wrong nutrition and start their first cutting-down diets.
However, the weight reduction achieved by this has no influence at all on
the leg circumference. Besides which, a diet makes the organism change over
to low-flame, so that the subsequent “normal” eating habits, when resumed,
lead to a sudden increase in weight (usually in the legs first of all!).
Nutritional disorders are however frequently a side-effect of lipoedema. At
the latest when the legs become sensitive to touch, and pain and haematomas
occur on every touch, the sex-life is impaired to a very great extent. One
result of this is that the affected people often look for a substitute
satisfaction, frequently in an excessive food intake. In many instances this
results in a nutritional disorder that needs to be treated. Here a stay in a
hospital specialising in lymphatic disorders gives the patients the
opportunity to get back to normal eating habits again.
2. Medicinal treatment
Lipoedema cannot be influenced or healed with medicines (neither by pills
nor by creams)!
The ideal sport to go in for with lipoedema is swimming. Here the muscular
activity takes place in a horizontal position, so that there is no danger of
the threat of an oedema which occurs when the body is upright (orthostatical
syndrome). Cycling is also good for you. Gymnastics, going for walks, and
light jogging can also be recommended.
4. Cosmetic corrections
Liposuction (suction of the fat) is a method of treatment that is frequently
applied. It must be admitted that in the past no improvement was observed in
a few instances. If the lymphatic vessels are damaged during the procedure
the result can even be a deterioration. Before you decide to have
liposuction you should get someone to tell you about all the side-effects,
the expense it involves, and the long-term results of this method.
5. Lymph drainage and compression treatment
The only recognised and highly effective method of
treatment is the
combination of manual lymph drainage and compression
treatment. Hereby the lymphatic vessels are opened by means of a special
massage technique. In the course of one session of e.g. 45 minutes
approximately 500 ml of lymph and water are moved out of each leg in the
all-round treatment. In order to make the effect last longer, both lymph
and blood have to be pressed into the lower-lying larger veins or lymph
In addition the provision with medical compression stockings or
tights is absolutely essential.
In lipoedema the legs are often beyond every standard size, so that
made-to-measure stockings in high compression classes are necessary.
Intermittent compression treatment with apparatus containing several
chambers seems to have a favourable effect on lipoedema and is necessary as
an additional therapy when the amount of manual lymph drainage (MLD) cannot
Treatment as an out-patient or an in-patient?
People with Stage I lipoedema are
normally treated as out-patients. From Stage II onwards treatment in
hospital must be taken into consideration at least as an initial measure.
There are several reasons for this:
1. The disease needs continuous treatment. If it is interrupted or
discontinued the findings and the pains will deteriorate more or less
quickly. The suffering is constitutional; there is therefore not one cause
which can be resisted therapeutically.
2. The patients, who are very often young, have to be convinced of the
necessity of wearing compression tights consistently. It is natural that
this will be more likely to succeed when an effect is visible. Treatment as
an out-patient certainly produces a clear reduction in the pains in many
instances, but not, however, an appreciable reduction in the circumference
of the legs.
3. In most instances the patients have a very disturbed feeling of
self-esteem (the younger they are, the more frequently). It is often a help
for them to be in a group with fellow-sufferers who are faced with the same
problems and with whom they can exchange stories of their experiences. After
having been to a hospital specialising in lymphatic disorders many women
seem to be internally transformed and have a positive attitude to their
4. From Stage II onwards an effective de-blockage, which accompanies a
measurable reduction of the circumference and volume (approx. 1 – 1.5 litres
per leg or 5 – 12 cm less on the upper leg), can no longer be achieved in by
a lymphatic therapist working outside a hospital because of the amount of
time needed for this.
In-patient treatment in a hospital specialising in lymphatic disorders.
Optimal treatment, such as can
only be performed in a hospital specialising in lymphatic disorders,
looks like this:
1. Manual lymph drainage in the morning and in the evening as a total
treatment for the duration of at least 45 mins., with simultaneous
breathing exercises and anti-blockage exercise-movements.
2. Subsequent bandaging of the legs with special foam rubber,
textile-elastic short stretch bandages.
3. If necessary intermittent compression for 30 – 60 minutes (if necessary
twice a day).
There are in addition supportive measures such as:
- advice on nutrition
- reduction and wholesome diets
- pain therapy
- bicycle ergometer training
- long walks
- psychological counselling
Female patients are occupied with this therapy all day long. It is only
through these intensive measures that appreciable reductions in the
circumference can be achieved. During the first two weeks the success of the
treatment is relatively small. In most cases the greatest progress is to be
expected after approximately 4 weeks. In severe forms with the second stage
of lymphatic oedema it may be necessary to carry on the treatment for
During the day
- Do special anti-blockage gymnastic exercises in compression stockings – if
prescribed by the doctor.
During the night
- If prescribed – put a bandage on the affected extremity after careful
- Put the affected arms or legs up! (If necessary raise the end of the bed).
- Avoid tropical regions (heat, insects)! Take antibiotics with you in case
of emergency. Your doctor will tell you the dosage).
- On long journeys have breaks so that you can do gymnastic exercises (in
the aeroplane, if possible, get up and walk about
again and again: do
rocking movements with your feet).
- No kneading massage!
- No fango packs in the oedematous area!
- No deep-heat-producing electrotherapy!
- No overstretching remedial gymnastics!
- Do not measure your blood-pressure on the affected arm.
- Do not allow any phlebography or direct lymphography to be performed on
the swollen limb!
- Do not accept manual lymph drainage as an isolated therapy! (Compression
treatment is absolutely essential!) In manual lymph drainage the affected
quarter of the body or the entire body must always be lymph-drained.
Go to a doctor immediately if …
- pains occur and/or the muscle-power diminishes.
- the swelling deteriorates in spite of adequate treatment.
- inflammation of the legs occurs with pain, redness, marks, or shivering
fits (erysipelas = erysipelas infection).
- Keep to your optimal weight or, if you are overweight, try and get back to
it by dieting and exercise!
- Make sure you have a balanced diet! Eat a lot of vitamins! Avoid sugar,
sweets, and things made with white flour
(cake, biscuits, etc.)
- Restrict the amount of salt you eat. Drink when you are thirsty; in other
words, you may drink as much as you want
(at least two litres a day).
Avoid injuries (thorns, prickles, tools).
Avoid at all events being bitten, or scratched by a cat.
Subsequent out-patient treatment
After having provided the patient
with compression stockings a consistent permanent continuation of this
treatment must take place at home:
Manual lymph drainage once to twice a week, the permanent wearing of
compression tights, and, if these measures are not sufficient, the
additional prescription of an apparatus for mechanical intermittent
compression by the general practitioner in charge or a phlebologist. These
measures serve to ensure the success of the treatment in the hospital
specialising in lymphatic disorders.
In many cases this may be sufficient. Frequently, however, the situation
occurs where, in spite of good coordination with the patient and the raising
of the weekly lymph drainage, extra hours in the “lymphomat”, and if
necessary also a rise in the compression by means of stronger and/or
additional compression stockings, an improvement is not achieved, but
instead a continuous deterioration occurs. This can make itself manifest in
the form of an insidious increase in the circumference and/or an increase in
the blockage problems/pains.
If this happens in spite of an open-minded and active cooperation in the
therapy on the part of the patient, i.e. if there can be no question of
compliance problems as the explanation for this, another in-patient stay in
a hospital specialising in lymphatic disorders cannot be avoided. And over
the course of the years additional in-patient treatment will have to be
considered when the possibilities of out-patient treatment in that place
have been exhausted.
What the female patient should be aware of: at home and at work
Avoid injuries, strain, extreme temperatures (heat and cold)!
Skirts, trousers, and belts must not exert pressure – free breathing is
Cosmetics and body-care
- When caring for your nails do not cut into the nail wall!
- Do not use cosmetics that irritate your skin!
- Do not use alkaline soap; use a soap with an acid pH value – the acid
protection layer of your skin must not be damaged. Your skin must not be dry
- Take care in the sauna! It can be harmful, but may not be.
- Take care when sun-bathing! You must at all events protect your skin from
- Avoid kneading massage of your leg and the lower backside of the same
In general, going in for sports is advantageous. The de-blocking effect of
sporting activities is increased even more if you wear compression
- Get your doctor to fit you out with compression stockings from the range
of the well-known Bavarian manufacturer Juzo. With the SkinProtect®
procedure specially developed by Juzo the fine mesh becomes extraordinarily
pervious to air and moisture and is therefore pleasant to wear.
- No sudden movements of the swollen extremity (take care in sports such as
tennis, squash, football etc.)
- Do not get frostbite if you go in for winter sports!
- Do not risk getting injured! (Choose cross-country skiing in preference to
alpine; gentle swimming is one of the therapeutic methods).
What is Lipodema
Lipodema is a medical condition
that is often confused with lymphedema. The individual with this condition
may appear to be simply obese and/or to have extremely swollen legs and
swollen abdomen. The condition is an uneven distribution of fat cells in
the sub-cutaneous regions generally in the legs or abdomen.
One major frustration of people with lipodema is that
they are accused of being simply "fat," which is absolutely not the case.
Perhaps one of the most critical complication is the
acquisition of secondary lymphedema. The increased weight can crush the
lymphatics causing blockages and hindrances to lymphatic flow. Another
complication is deterioration of the joints and vertebrae from the excessive
weight. Other complications may include varicose veins and/or the deep
venous system. Many lipodema patients also experience a tremendous amount
of pain due to the condition and the affects on the body's systems. Other
complications may include "pins and needles" discomfort, decreased vascular
flow in the affected limbs and a decreased skin temperature in the affected
There is no known "cure" for lipodema. Because it is
not a medical condition caused by over-eating and improper nutrition habits,
diets will not a much of an effect. Neither can the condition be treated
with medicines or diuretics.
Treatments that have helped include massage therapy in conjunction with compression bandages, benzopyrones, which includes the use
of coumarin. Liposuction has also been used, but the long term success is
still open to debate.
Lipodema or Lymphedema??
The signs of lipodema are distinctly differant from
lymphedema. First, swelling does not extend to the feet, but extends from
the abdomen to the ankle. Second, the limb texture is rubbery not hard.
Third, pitting edema is not present. Fourth, Stemmer's sign is negative and
finally infections that plague lymphedema patients are generally not a
problem with lipodema. The reason for this is that lipodema is not caused
by a malformed or damaged lymphatic system.
NOTE: Lipoedema and lipo-lymphedema can also
occur in the arms and chest. Normally, abdominal and thigh deposits will
also be evident when this occurs. However, this is not always the case.
DISTURBANCES IN LIPOEDEMA
Mortimer, London, UK
Van Geest A.J., Esten
S.C.A.M., Cambier J-P.R.A., et al.
This study by Geest and colleagues investigates possible lymphatic
abnormalities in lipedema. Standard web space lymphoscintigraphy was
performed in lower limbs of patients with lipedema (n=22), and “typus
rusticanus” (n=6) and controls (n=7). Their controls were not normal
subjects but patients with venous insufficiency (Widmer stage II). What was
original in this study was repeat lymphoscintigraphy using an identical
protocol but with the injection depot administered in the subcutaneous fat
of each leg, and therefore within the lipedema tissue (liposcintigraphy).
Both qualitative (image assessment) and semiquantitative (speed of lymph
transport) measures were recorded for analysis. The results showed no
differences from the venous controls, but, somewhat surprisingly, lymph
transport was faster in the lipedema group than in the “typus rusticanus”
when studied by liposcintigraphy. Their conclusion was that epifascial lymph
drainage in lipedema is not disturbed.
This study is welcome because lipedema is underdiagnosed and
under-researched. Sufferers feel let down by the medical profession,
particularly when dismissed as simply obese. In our experience, lipedema is
undoubtedly a medical entity distinct from obesity, and almost certainly
genetic in origin, given the strong dominant line of inheritance we see
through the female side of families.
I am sure the authors were surprised not to see any lymphatic disturbances
from the liposcintigraphy. I would have hypothesized abnormalities existed,
given the frequent progression of lipedema to lymphedema (so called
lipo-lymphedema or lipedema-lymphedema syndrome). It was difficult to follow
clearly their quantitative measures. In the methods section the authors
refer to two outcome measures: 1) Transport-Index (Ti) and 2) ilioinguinal
radioactivity after 45 mins and 2 hours, but in the table of results I
cannot see any reference to Ti.
The inclusion of “typus rusticanus” is interesting but I am sure that, like
me, a number of readers will be thinking, what exactly is this condition? Is
it a localized form of lipedema or simply fat pads over which the skin
becomes cold and blue (perniotic – like chilblains)? Do we consider this
group “fat normals” or a variant of lipedema, an important distinction for
interpreting the results correctly?”
In summary, an important study which raises the profile of lipedema, a
neglected but important condition in women. Unfortunately, the results
do not tell us much more than we already knew, which is not a lot. Patient
advocacy is increasing (firstname.lastname@example.org) and hopefully with greater
interest in, and funding of, research into the science of fat and adiposity,
better understanding of lipedema will follow soon.
An Interview with
Rebecca Morris of the National Lipedema Association
Rebecca Morris, the founding president of the
National Lipedema Association
(NLA), graciously agreed to an e-mail interview to share information about
lipedema and the NLA.
What is lipedema?
lipedema was first identified in the United States, at the Mayo Clinic in
1940, it is not well known in this country and it is often confused with
obesity or lymphedema. Patients typically are either misdiagnosed or not
diagnosed at all, and most never receive appropriate medical treatment. Lipedema is a bilateral, symmetrical deposit and
swelling of adipose tissue in the lower extremities following a particular
pattern, from the waist to a very distinct line above the ankles; the feet
and ankles are not normally affected unless lymphedema also is present. In addition to this unusual pattern, lipedema is
distinctive in four ways: 1) it can be inherited; 2) it occurs almost
exclusively in women; 3) it occurs in women of all sizes, from the anorexic
to the very obese; and 4) lipedemic fat generally is not mobilized by diet
Can those with lipedema
diet and exercise to get rid of the excess fat?
People with lipedema, even anorexics, can diet
and exercise away their "normal" fat but they retain the lipedemic fat.
Obese lipedema patients who undergo bariatric surgery lose their weight
almost entirely from the waist up. Patients tend to gain fat in the
lipedemic areas and lose it only in the non-lipedemic areas. As a result,
the classic lipedemic profile, in the early stages, is a woman who looks
like a size 8 from the waist up and size 16 from the waist down, with
disproportionately large, column-like legs.Lipedema typically presents first at puberty, is often
progressive, and can be triggered or worsen during pregnancy or at
menopause. In its later stages, as the patient’s lower body enlarges,
lipedema can contribute to secondary lymphedema, develop in the arms and
abdomen, and put patients at risk for obesity as well as other diseases and
symptoms associated with increasing immobility.
How is lipedema
Rebecca: A lipedema
diagnosis is based primarily on clinical presentation and medical history.
Unfortunately, we do not yet have genetic or other markers for lipedema. In
of the lymphatic vessels show a flame-like pattern different from that found
Do you have any
estimates as to how many women are affected by lipedema?
are imprecise and vary widely, but many researchers and clinicians believe
that a significant number of women currently classified as obese in fact
have lipedema, either instead of, or in addition to, obesity.
Where does lymphedema
come into the picture with lipedema?
Rebecca: As fat
cells are deposited and expand, they interfere with the pathways of
lymphatic vessels. This inhibits the flow of lymphatic fluid and patients
can develop secondary lymphedema, usually in the lower legs. This condition
is known as
At this point, the lymphedema can cause swelling in the feet and ankles.
How is lipedema
includes Manual Lymphatic Drainage (MLD), bandaging, compression, and
self-care. These components of treatment can help reduce any edema in the
tissues and, in some cases, can reduce the pain associated with lipedemic
fat (lipedema also is known as “painful fat syndrome”). In addition,
some researchers believe that over a significant period of time, the
pressure of compression will help to shrink the size, although not the
number, of fat cells.
For patients who also have secondary lymphedema, this
treatment can help reduce the fluid volume associated with the lymphedema
Compression can be very problematic for many lipedema
patients because of the underlying pain, and because the unusual shape of
lipedemic legs means that compression garments often cause tourniquet
effects at the ankles, knees and thighs. Many lipedema patients are unable
to tolerate compression at all. As a result, if they also have lymphedema,
they are more at risk for the side effects of uncontrolled lymphedema,
including recurring cellulitis and fibrosis.
What is your goal in
founding the National Lipedema Association?
Rebecca: The mission
of the NLA is to educate medical providers and patients about lipedema, and
to promote and support research that benefits people with lipedema. Because lipedema is not well known, we want to educate
doctors, nurses, and other medical providers so that they can properly
diagnose lipedema and refer patients for appropriate treatment. We are
working on new compression options specifically for lipedema, so that
therapists have more tools for treating lipedema patients. We are working
with lipedema researchers to identify appropriate patients for studies and
generally to facilitate their work. We will promote lipedema research
specifically, and more generally research in lymphatic and metabolic
disorders that ultimately will benefit lipedema patients.
Our web site at
launch in the next few months, and will include educational materials and
news about lipedema, a medical literature database, patient and medical
provider registries, and links to resources for clinicians, therapists and
How can those who are
interested become active in the National Lipedema Association?
Rebecca: You can
contact us by e-mail at
email@example.com to join our mailing list. Please tell us if you have particular
needs, and we will try to connect you with the right resources.If you are a doctor or therapist having difficulty
treating a patient, we will refer you to information sources and/or refer
you to other providers who have had similar problems. Please also tell your
patients about the NLA.
What kind of help would
be most valuable to the NLA and its members?
If you are a patient and other members of your family also have lipedema,
please let us know; you may be a candidate to participate in one of the
ongoing research studies. We need volunteers to help with a wide array of
projects, and we’d love to hear from you about your interests.And finally, of course, we need money to help fuel our
dream of finding treatments and eventually a cure for lipedema. All
donations are tax-exempt.
The National Lipedema Association mailing address is 27 Freeman Street,
Arlington, MA 02474. Rebecca can be reached by e-mail at
To learn more about how lipedema and lymphedema compare,
Lipedema and Lymphedema Compared.
May Not Be Obesity in Women
An obesity epidemic continues to sweep the country and
efforts are increasing to fight the growing number of people affected.
Health care providers have consistently endorsed healthy eating and
regular exercise as a way to combat obesity and weight gain. But for a
significant number of women across the country, dieting and exercise will
not make a difference. That’s because they are not suffering from
obesity. They have a lymphatic and metabolic
disorder called lipedema.
involves the extra deposit and expansion of fat
cells in a distinct pattern on the body, usually from just below the waist
to right above the ankles. In some cases, the arms and torso can be
affected. A person with lipedema can appear quite skinny from the waist
up, but obese from the waist down. The fat distribution occurs on both
sides of the body in a similar fashion.
predominantly affects women. It can be inherited and can occur in women of
“It is most
likely a hormonal disturbance because men don’t typically suffer from
lipedema,” said Guenter Klose, a pioneering therapist who helped establish
treatments in the United States for lymphatic diseases, especially
lymphedema. Lymphedema is a swelling of a body part and the result of
abnormal accumulation of lymph fluid. The condition can develop in
untreated lipedema patients, and at that point the disease is known
lipo-lymphedema. Based in Red Bank, N.J., Klose is a National Lipedema
Association scientific advisory board member.
typically manifests at puberty, but it can show up or worsen after a
pregnancy, after gynecological surgery or at the start of menopause. As
the disease progresses, patients with lipedema can experience a host of
problems. Patients can experience painful swelling, bruising, infections,
and fibrosis, which is the formation of scar-like tissue. Recognizing
lipedema is not easy in the early stages, especially when patients are not
obese. As the disease progresses and patients become larger, they are
often labeled obese, going years without a proper diagnosis.
out I had lipedema in much the same way that many lipedema patients do,”
said Rebecca Morris, founder and president of the National Lipedema
Association in Arlington, Mass. “I recognized the symptoms of lymphedema
in my legs. In 2002, for the third time and at my insistence, I was
referred for lymphedema therapy.”It was the therapist treating Morris’
lymphedema who concluded she had had lipedema, an opinion later confirmed
by physician specialist. Neither Morris nor her primary care physician
knew what lipedema was.
the fat associated with obesity, lipedemic fat cannot be exercised away.
In addition, this fat tissue does not respond or reduce with diet, Klose
said. As a result, undiagnosed patients end up frustrated and confused.
There is currently no cure for lipedema and the limited treatments
available focus on alleviating symptoms. Compression garments and manual
lymphatic drainage can help reduce pressure sensitivity.The results are
gradual and it requires a lot of patience and dedication to the program by
the patient.The National Lipedema Association is working to improve care
for the condition by promoting research, as well as better recognition of
the condition by both health care professionals and patients.
From the LYMPHOEDEMA
ASSOCIATION OF AUSTRALIA:
and Treatment of Lipodema
Lipodema is a chronic disease of complex causes,
many of which we understand little about. These include hormonal imbalance,
an inability to metabolise exudate from blood vessels so that those proteins
and cells that would normally be metabolised and returned to the circulation
are deposited as adipose tissue in the subcutaneous tissue. The blood
vessels themselves are affected, venous stasis and vasoconstriction occur
and return is diminished especially at the subcutaneous level. This causes
arterial constriction which accounts for the cold and often pale skin and
leads to an increased lymphatic load(1). The condition worsens over years as
tissue channels become progressively narrowed until the condition of a
secondary lymphoedema, overlying the original lipodema, may lead to a
situation where the patient may be either wheel-chair bound or bedridden.
Weight gains can be up to or greater than 250 kgs. At this stage infections
and intractable ulcers (or ones that necessitate skin grafts when lack of
oxygenation to the skin causes problems with healing) which can be due to
the simplest injury e.g. careless donning of a compression garment or other
minor trauma, occur with an even higher frequency.
This condition occurs predominantly in women, and can in some cases be
familial; the rare cases of men with lipodema always seem to include a
hormonal imbalance which should be treated if possible. The macrophages
themselves become overloaded and cease to play an active role in protein
proteolysis and look like fat cells.
Lipodema is often misdiagnosed as obesity
in its earlier stages but the symptoms are clear and distinctly
recognisable clinically from this. In its later stages it may be more
difficult to distinguish from lymphoedema, although the case history and
distribution of excessive tissue should provide an indication. The overlying
condition of lymphoedema may occur in the later stages. Lipodema can occur
in the legs, buttocks and also, but not necessarily, in the arms. It does
not involve either the feet or hands until the onset of lymphoedema. The
mean age of diagnosis is approximately 35-36 years but it usually starts at
puberty. Symptoms of onset, however, can start in childhood, and may be
clinically detectable in adolescence. Cellulite, which is a very mild form
of lipodema, usually occurs towards or after menopause. It has been
suggested that a mixture of primary lymphoedema as well as lipodema can
occur in some cases.
- There is symmetrical bilateral enlargement of limbs, both in legs (with
buttocks involved) or in both legs and arms, but with the obvious
enlargement excluding the feet and hands, until the later stages.
Enlargement is a gradual but continuous process.
- There is no pitting with pressure. The tissue feels more like "rubber", and
is not as hard and fibrotic as in a grade II lymphoedema. It does not, in
the early stages, reduce with elevation.
- There is pain on pressure, especially in the medial aspect of the thigh and
the base of the spine. As the disease progresses, pain is often caused by
the lightest of touches to the skin, particularly later in the day. Pain is
also caused by "self pressure" e.g. crossing the legs or sitting with
pressure on the spine. The abdomen may also be painful to pressure.
- Stemmer's sign is negative; i.e. a skin fold test done on the second toe. If
it comes up as a thin fold test when "pinched", no lymphoedema is present.
If it is a "lump" this indicates lymphoedema.
- Superficial capillaries are easily damaged i.e. the limb bruises easily.
- Skin temperature is lowered. Hands may feel clammy (damp), but limbs are
cold. General nourishment of the skin is also affected and may cause "patchy"
skin, dry in one place, oily in others in the early stages. Skin elasticity
is reduced and it usually has an "orange peel" appearance.
- "Pins and needles" are common and movement seems to alleviate these to a
large extent. A feeling of dizziness may be present. There seems to be a
reduction of venous return in the legs when standing which can lead to
fainting; this may be prevented by walking.
- There is little or no loss of weight with rigorous diet. Many of these
patients have eaten low calorie diets for many years. In some cases their
stomachs have been stapled because of misdiagnosis. In some of these cases,
this seems to have lead to the onset of stomach cancer. It is not the answer
to the problem! Obesity, caused by overeating, does respond to a proper
dietary regime; lipodema does not.
- Joint pains (especially in knees) are common.
Infection of the limb, either bacterial or mycotic is not normally a problem.
Plantar support is reduced i.e. people have fallen arches.
The shape of lipodema may vary, from a inverted "pear" shape (like a
classical Greek column) to a more bulbous shape from the ankles upward. (Figs.
1-2.) This also usually involves the buttocks.
Lymphoscintigraphy i.e. time of clearance of a radio-tracer injected into
the feet to the inguinal nodes, is normal.
Lymphoedema Accompanying by Lipodema in the later stages.
Stemmer's sign becomes positive.
Pressure will cause pitting, and there may be a small reduction with
Folds of skin will further enlarge and feet will swell (Fig. 4.). If arms
are affected hands also will swell. If the top of the body is affected the
shoulders, thoracic and neck area may be affected as well.
Infection may become a problem.
Diagnosis can normally be achieved by the taking of a careful case history
and clinical observation (see above). In the later stages lymphoscintigraphy
may clarify this, but the picture is so different from primary lymphoedema
that this should seldom be necessary.
All of these patients present with a variety of these problems ranging from
lack of self-confidence to lack of confidence in their medical or health
workers, often because of misdiagnosis and lack of sympathy, and then to
real depression and anxiety and because of their appearance and the lack of
understanding of the condition, particularly as their mobility decreases.
The whole problem, of course, becomes worse if the onset of lymphoedema
further exacerbates the condition.
They are "blamed" for being overweight, told they eat too much or are "cheating"
on their prescribed diets. If they are hospitalised for a weight loss
program when the situation becomes very serious and they don't lose weight,
they are often met by the comment "I am surprised" by their health care
professionals and are summarily dismissed as "patients for whom nothing can
be done" or "we don't know what is wrong with you" or "you'll just have to
live with it". This is not helpful to the patient who should be made aware
that the condition is a genetic abnormality and that their obesity is not
their fault. Of course, up to a point dieting can help but it will never
cure this condition. They obviously, and for good reason, become discouraged
and dismayed by their problems, which seem not even to be recognised.
lymphoedema occurs on top of the lipoedema this is a situation which is
almost a problem that is so great for them (and again often undiagnosed as
such) that they need to be very strong people to cope with it. Sadly, many
are not able to do this. Psychological counselling can be helpful; for this
poorly understood condition it is seldom offered. Invalid Pensions are not
the answer for those that have, until they could not, lead an active and
productive life. In many centres in Australia and I am sure worldwide, these
patients are turned away from treatment centres (for lymphoedema) as
untreatable cases. In some cases they resort to surgery in a final effort to
improve their condition. The result of some of these operations (including
liposuction and limb reduction) are so appalling that they have to be seen
to be believed.
Lipodema can be treated and reduced with careful massage to the normal nodal
groups after the truncal areas have been precleared i.e. the superficial
inguinal and axillary nodes, then gentle superficial drainage towards these.
and compression applied to the legs in the form of bandaging as garments. Although not as easy to treat as is lymphoedema, considerable reduction,
easing of pain and improvement in mobility, can be of huge physical and
psychological benefit to the patient. Compression bandaging is tolerable,
especially after a few days of massage. The overlying lymphoedema, if
present, can be greatly reduced. The improved mobility will increase the
ability to exercise which will help the calf muscles pump and increase
venous and lymphatic return. After the initial decongestion by manual
drainage permanent compression causes a significant reduction in adipose
tissue and also has a positive influence on the disturbed veno-arterial
Benzo-pyrones seem to help this condition considerably, presumably by their
stimulation of macrophage numbers and activity. Many patients have reported
a considerable weight gain when coumarin became unavailable in Australia.
Interestingly, the Italian product CellaseneÔ which is recommended for
cellulite, contains benzo-pyrones and other plant extracts that work in a
similar way to benzo-pyrones, so despite medical scepticism, this may help
in these conditions. Unfortunately the cost of these and other available
benzo-pyrones are too high for many people who would benefit from them.
The only diet which may help is a very low protein only diet (250 mg per day)
(and nothing else, except, of course, water), which will put the body into a
state of ketosis where some of the excess fat may be metabolised. However
this usually results in weight loss in already lean areas e.g. the waist and
often the upper body. Operative procedures do not attack the cause of the
problem. Careful liposuction may produce immediate reduction but considering
the destruction of tissue it causes, long term results have not been
clinically proven. Other reduction operations are contraindicated. Pumps are
normally intolerable because of the pain they cause, and there is no
published evidence of them ever being successful in this condition.
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lipedema was first used by Allen and Hines (1940) to describe a symmetrical
"swelling" of both legs, extending from the hips to
the ankles, caused by deposits of subcutaneous adipose (fatty) tissue. The
underlying etiology of these fat deposits remains unknown.
While lipedema is not a disorder of the lymphatic system per se, it is
frequently confused with bilateral lower extremity lymphedema.
It occurs almost exclusively in women and may have an associated family
history (20 per cent of cases) and is usually accompanied
by hormonal disorders as well (Strossenreuther, 1999). If present in a man, it
is accompanied by massive hormonal disorder.
Fat in the lower extremities extends to the malleoli (ankle bones), often with
flaps of tissue hanging over the foot. The feet are not affected;
occasionally, lipedema is found in the arms. Typically, there are also fatty
bulges in the medial proximal thigh and the medial distal thigh,
just above the knee. Clinically, the affected individuals complain of pitting
edema as the day progresses, which is relieved by prolonged
elevation of the leg(s) overnight (Rank and Wong, 1966; Rudkin and Miller,
1994; Casley-Smith, 1997).
Stages of Lipedema.
I, the skin is still soft and regular, but nodular changes can be felt upon
palpation (see photo 1).
There are no color changes in the skin and
the subcutaneous tissues have a spongy feel, like a soft rubber doll. In Stage
the subcutaneous tissue becomes more nodular and tough. Large fatty lobules
begin to form on the medial distal and proximal thigh and
medial and lateral ankles just above the malleoli (see photo 2). Pitting
edema is common, increasing as the day progresses
The individual may report hypersensitivity over the anterior tibial (shin)
area. Skin color changes occur in the lower leg, indicative of secondary
lymphedema, which often occurs in later stage lipedema.
Pathophysiology of Lipedema (Strossenreuther, 1999).
many histological and physiological changes that occur in lipedema. There is a
decrease in the elasticity of the skin and
underlying connective tissue. The basement membrane of blood vessels is
thickened and there are disturbances in vasomotion. There
is decreased vascular resistance, increased skin perfusion, and increased
capillary filtration. There is increased venous/blood capillary
pressure causing increased ultrafiltration. These vascular changes combined
with the decreased efficiency of the calf muscle pump,
result in both the dependent pitting edema seen in Stage I, as well as the the
secondary lymphedema that often complicates lipedema
in its later stages. Histological changes seen in lipedema include a thinning
of the epidermal layer, thickening of the subcutaneous tissuelayer, fibrosis of arterioles, tearing of elastic fibers, dilated venules and
capillaries, and hypertrophy and hyperplasia of fat cells. Clinical
studies show that there is enlargement of the pre-lymphatic channels (Stoberl
et al., 1986) as well as defects in capillary perfusion (Weinertand Leeman, 1991). Some authors have reported no alteration in lymphatic
transport (Brautigam et al., 1998) while others
(Bilancini et al., 1995) have reported decreased lymph outflow in those
individuals with lipedema. Foldi and Foldi (1993) reported an increase
in fat cell growth during lymphostasis.
Diagnosis. The diagnosis of lipedema
is difficult if the clinician is unfamiliar with this condition. Often, these
people are told that they are"fat" and should just lose weight to resolve the problem. For reasons still
unknown, the fatty tissue accompanying this condition cannot
be significantly decreased by diet. It is not uncommon for a diagnosis of
primary lymphedema to be made. This results in frustration for the person who
then seeks out lymphedema therapy with poor results.
There are several significant clinical differences between lipedema and
bilateral primary lymphedema. The feet are not involved in lipedema;
they are edematous with a positive Stemmer's sign in lymphedema, Stemmer's
sign is negative in lipedema. The "swelling"
in lipedema is
symmetrical, while in primary lymphedema usually one limb is more involved
than the other. The subcutaneous tissues feel rubbery in lipedema. In advanced
Stage II lymphedema, there is significant subcutaneous fibrosis, which feels
firmer than lipedema.
While there have been reported incidences of cellulitis in Stage II lipedema
(usually with a component of lymphedema as well), the frequency of cellulitis
in Stage II lymphedema is much higher. The time of onset of the "swelling" in
lipedema is usually around puberty and 90 per cent of these cases have
accompanying diagnoses of hormonal disturbance (thyroid, pituitary, or
ovarian). This is usually not the case with primary lymphedema.
lymphoscintigram may be helpful to differentiate between lymphedema and
lipedema, however, there can be conflicting results as lymphedema often occurs
to some degree in the later stages of lipedema, probably due to impairment of
lymph flow caused by the pressure of fatty tissue. In fact, there are clinical
cases of bilateral lower extremity lymphedema in the morbidly obese
individual; the onset of the lymphedema occurs after body weight exceeds
350-400 pounds. It is plausible to suspect that the pressure of a large apron
of abdominal fat can effectively block lymph flow through the inguinal area
causing the lymphedema but there is a difference between these cases and
lipedema because obesity does not cause lipedema. Lipedema is caused by a
hormonal imbalance resulting in excessive deposition of adipose tissue, most
often in the lower extremities (see Figs. 12-21; 12-22) although it can occur
in the upper extremities as well.
no effective medical treatment for lipedema and the prognosis is guarded;
however, significant functional improvements are possible with good program
compliance and therapy intervention. Medical management involves treating the
hormonal disturbance as effectively as possible and providing nutritional
guidance to avoid additional weight gain. Many of these individuals have
endured years of ridicule because of their physical appearance and become
recluses in their homes, further limiting their activity level. As lipedema
progresses and the hypersensitivity increases, they feel less inclined to walk
or exercise because of the pain. They inevitably gain more weight due to the
inactivity and depression, often finding food their only comfort.
primary goal of therapy intervention in the person with lipedema is
symptomatic relief and realistic improvement of trunk and lower extremity
function. Application of the combined lymphedema treatments has shown some
success in relieving the pain and hypersensitivity in the lower legs and
improving general mobility. Usually, a lower level of compression is needed to
support a lipedematous limb, compared to a lymphedematous limb of the same
size and girth. This guideline applies to the compression garments as well.
These individuals often require more padding under the compression bandages,
particularly in the anterior tibial area. They do not tolerate the heavier,
denser compression fabrics and usually require a lower grade compression
garment than someone with uncomplicated lymphedema. The therapist must
remember, however, that later stage lipedema is often accompanied by
lymphedema as well, and the treatment and management must take that factor
into consideration when recommending exercise and garments.
goals of intervention are to decrease pain and hypersensitivity, to decrease
the lymphedematous component of the disease, and to assist the individual in
maintaining and/or reducing adipose tissue through exercise and nutritional
guidance. The compression garments can help to decrease the adipose tissue
with exercise and weight loss. The most difficult task is fitting the
compression garments. They must be custom made due to the large size of the
individual and are often uncomfortable at the waist, particularly when
sitting. Making the radical change in daily activity level is most challenging
for these individuals.
Providing continued support and encouragement is important.
distinguish lymphedema from lipedema.
A very good article was published in the April edition of Consultant (2001)
41, 613. The figure
demonstrating lipedema is from that article.
Lymphedema and lipedema are often confused. Lymphedema is due to increased
lymphatic pressure with accumulation of edema in the subcutaneous tissue. Over
time this results in firming or hardness of the tissues that is characterized
by fibrosis. In contrast, lipedema results from the deposition of excess fat
in the subcutaneous tissues but does not involve lymphatic hypertension or
abnormal lymphatic vessels. The excess fat is normal in appearance under the
microscope and there is generally no abnormalities of the lymphatic channels.
In addition, there is no abnormal accumulation of excess edema or fibrosis in
There are several features about lipedema that distinguish it from
lymphedema. One of the most notable differences is the fact that the feet are
generally not involved in lipedema. The excess accumulation of subcutaneous
fat can involve the entire leg but will generally stop at the ankle, leaving a
characteristic ring at the base of the ankle where the lipedema stops. Another
difference is the fact that the excess fat is generally symmetric so that both
legs are involved equally. In many patients, only the lower extremities and
the buttocks are involved, with no excess accumulation of fat in the arms,
chest or abdomen. Chronic venous insufficiency can cause a similar appearance;
however, chronic venous insufficiency results in swelling of the feet and the
accumulation of subcutaneous fluid. The pitting edema seen in lymphedema and
in edema due to congestive heart failure is generally not seen in lipedema.
This is why leg elevation can be helpful to many patients with venous stasis
and to some patients with lymphedema, but is rarely helpful for patients with
lipedema. The excess fluid seen in venous insufficiency and lymphedema causes
darkening and fibrosis of the skin over time. These skin changes are not seen
in lipedema. Congestive heart failure can cause swelling in the legs; however,
lipedema is characteristically seen in women and generally starts during
adolescence. These patients do not have heart failure. Ulcers and recurrent
infections are commonly observed in venous stasis and lymphedema respectively,
but are rare in lipedema.
Lipedema generally starts slowly during adolescence and progressively
worsens over time, especially in patients who gain significant amounts of
excess weight. Dieting can result in a normal appearance in the upper body but
persistently enlarged legs. Diet control can be helpful in the management of
lipedema since it appears that excess fat preferentially accumulates in the
lower extremities. Patients with lipedema often have a history family members
with disproportionately large legs.
The treatment for lipedema is generally diet control. Excess weight will
preferentially accumulate in the lower extremities. However, even strict
dietary measures may not result full resolution of the lower extremity
accumulation of lipid. Elevation and compression have modest impact since
there is no vascular compromise and no interstitial fluid that needs to be
removed. Some efforts have been made to treat lipedema with surgical removal
of the excess fat. It is too early to determine the long-term effects of these
Broadcast ABC online: 6.30pm on 7/5/2002
Presented by Dr Norman Swan
Lipoedema is an
abnormal accumulation of fat cells which usually occurs in the legs and
almost always in women. Unlike obesity the woman’s legs increase in size but
not their feet, and the skin is often painful to touch and easily bruised.
If there is only a small amount of lipoedema it does not create a health
problem but large accumulations of fat can block the lymphatic system and
cause lymphoedema (an accumulation of fluid). Unfortunately there are no
effective treatments as yet but the Lymphoedema Assessment Clinic at
Flinders Medical Centre in Adelaide is currently testing new treatments.
NORMAN SWAN: Cellulite is a word
that many women dread, something that was invented by the cosmetic industry
to make money out of women's fears.
But there is another kind of fat involving women's legs that can cause
serious problems.And they've been trying to find solutions for it in Adelaide.
I went to see what they came up with.A few years ago it would have been unthinkable for Margie Broomhead to show her legs on national television.
And although she is a keen swimmer, she was even too embarrassed to show
them at the beach.
MARGIE BROOMHEAD, PATIENT: I reached the stage where I thought -- "Blow
It's something I can't do anything about. "I'll go down in bathers."
I thoroughly enjoyed it but I could still see people looking at me and you
know, "Ooh, look at that!"and I didn't do it any more.
NORMAN SWAN: As a young woman, Margie had no problem keeping her slim figure
but after the birth of her daughter, she needed a series of abdominal
operations and she began to put on alarming amounts of weight.
MARGIE BROOMHEAD: The gynie just said "You've got to have, this and you've
got to have that, you've got to have -- " and it was endless but nobody was
doing anything about me putting on weight. He did put me on a diet, umpteen other doctors put me on a diet, Every
doctor I met put me on a diet.
(Laughs) We got nowhere.
NORMAN SWAN: Margie's problem wasn't her eating. It was lipodema.
Lipodema is an abnormal accumulation of fat, almost always in the legs and
almost always in women. It's usually inherited, so Margie's operations weren't the cause.
In fact, it usually starts to occur when you put on a bit of weight.
But as opposed to general obesity, the weight accumulates, as I said, in the
legs and sometimes the arms and dieting won't shift it.
PROFESSOR NEIL PILLER, FLINDERS MEDICAL CENTRE: The interesting thing with
this group of people is that they don't seem to respond to diet.
In other words, they can be put on a low-calorie diet and nothing much will
happen, they won't lose the weight. They may lose the weight around here on
their chest area or their tummy area but their legs will stay the same.
NORMAN SWAN: Researchers at the Flinders Medical Centre in SA became
interested in lipodema because it can cause lymphoedema, a pooling of
lymphatic fluid in the legs which makes them swell even more.
PROFESSOR NEIL PILLER: In a mild form its OK, but if you get a severe form
then the individual fat cells become so large and so significant that they
begin to impact on the lymphatic system.
NORMAN SWAN: Lipodema is poorly recognized and commonly dismissed as
To the frustration of women with lipodema, medical science has few
PROFESSOR NEIL PILLER: I must say with lipodemas, they're very, very
difficult to manage.
Once you've got them, what you can do is minimise the lymphatic component of
It's very hard to manage the fatty component of them.
NORMAN SWAN: But, the news is better for women like Margie whose lipodema is
causing lymphatic fluid retention.
Lasers and massage machines are improving the treatment for lymphoedema,
significantly reducing the pain and the size of their legs.
MARGIE BROOMHEAD: I still haven't got anywhere near Betty Grable's legs.
PROFESSOR NEIL PILLER: We're working on it.
differ from lymphoedema?
lipoedema? Allan and Hines
first described Lipoedema in 1940 as a bilateral enlargement of the legs
thought to be due to abnormal deposition of subcutaneous fat and the
accumulation of fluid in the lower legs. They also classified it as 'painful
fat syndrome'. It was not until 1949 that Wold et al would define diagnostic
criteria for lipoedema that included bilateral, symmetrical leg swelling
excluding the feet,
which remain normal in size; minimal pitting oedema; pain and bruising in
the swollen areas and large legs, thighs and buttocks despite dieting. In
addition, the condition occurs almost exclusively in females and is normally
first noticed at puberty or pregnancy.
Unfortunately, lipoedema is often not diagnosed and can be mistaken for
several conditions including lymphoedema or obesity.
manifest with both physical and psychological problems including: discomfort
at sites of swelling, spontaneous bruising and tenderness as well as a
hatred for the disproportionally large legs while Western culture values the
perception of slender legs.
The function of
the lymphatics is to clear protein and water from the tissues. Fluid
accumulation can be due to the absence, damage to, or obstruction of
lymphatic vessels affecting the transporting capacity of the system.When the
fluid formation is increased to a point that it overwhelms the capacity of
the lymphatics absorptive system, oedema (swelling) occurs.
Lymphoedema of the legs tends to occur after puberty (but can occur at any
age) with foot and ankle swelling. It can affect both males and females. In
the early stages of chronic (long-term) lymphoedema, the swelling can be
reversible. Pitting of the skin is invariably present. Swelling can
disappear after a night's rest, although not in established lymphoedema.
Yet, if this swelling continues and is left untreated, it will continue to
increase and the skin may become hardened, dry and scaly in appearance.
The increase in weight can cause joint problems, leading to a reduction in
mobility and pain occurring in the affected limbs. As a result of the
swelling and altered local immunity, cellulitis may occur. This manifests as
hot, red skin that can break down because of blistering. The individual may
become systemically unwell and experience flu-like symptoms. A prescribed
course of antibiotics as soon as possible is required. If very unwell, the
patient may require intravenous antibiotics in hospital.Multiple episodes of
cellulitis can occur leading to treatment using long term prophylactic
explain lipoedema, it is necessary to compare this condition to lymphoedema.
Lymphoedema is usually asymmetrical and can be either acquired (through
injury to the limb or tumours) or congenital (hereditary). Lipoedema on the
other hand, is seen as the symmetrical enlargement of both lower limbs,
beginning at the ankle and extending proximally as far as the waist and
appears to be hereditary.
The table below further
highlights the obvious differences.
males & females
Age of onset
around 40% of cases
around 20% of cases
(Harwood et al 1996)
(Harwood et al 1996)
normal or thinner
thicker & firmer
Pitting of skin
Pain & discomfort
Effect of dieting
little effect on legs
loss from trunk & legs
The sparing of
the feet causes a 'bracelet effect' at the ankle. Unlike lymphoedema,
lipoedema does not appear to cause skin thickening. The individual will
often complain of extreme aching and tenderness within the affected limbs,
especially around the knees due to the extra weight. Pain may be much more
of a feature than with lymphoedema.
lipoedema differ from obesity?
Body fat is made
up of adipose tissue that is important as a store of energy. This fat can be
mobilised quickly in response to metabolic demands. Obesity can be thought
of as excess body fat. This can cause health problems including; high blood
pressure and diabetes. If an obese individual attempts to diet, the weight
will be lost uniformly from all over the body.
Yet, an individual with lipoedema will lose weight preferentially from upper body and face.
reason for this at present is not known.
What causes the
fluid retention to occur in lipoedema?
retention appears to occur to a significant degree with lymphoedema, it has
been recognised with lipoedema that in the early stages the oedema may be
minimal but over time this will increase and an individual may present with
lipoedema and lymphoedema. So both conditions may coexist.
This condition is often misdiagnosed and treatment
Individuals are advised to diet and lose the excess weight. This can in the
short-term, help if the individual is obese. If the individual is not
overweight and just disproportionally large from the waist down, this can
potentially lead to a state of anorexia. The individual will attempt to lose
weight, unfortunately, due to the nature of the condition, the individual
will remain large from the waist down, whilst losing the weight from the
upper body and face. This can exacerbate the disproportionate nature of the
condition, leading to increased feelings of depression and disturbed body
Exercise is essential not just for 'burning fat' but also for enhancing any
'sluggish' lymph drainage, which likely co-exists. The best exercise to
undertake is water aerobics. This will support the joints whilst allowing
resistance to occur which will increase your heart rate. If this is not
appropriate then walking can be of benefit either on a treadmill or outside.
However, this may put added stress onto already painful knee joints.
Alternatively, diuretics are prescribed, in the belief that the swelling is
caused by fluid retention, but very little, if any, benefit will be gained.
Perhaps the most successful treatment currently available is the use of
surgical support stockings in combination with movement and exercise. These
stockings, whilst expensive, can usually be obtained via the GP. The
benefits of stockings include; helping redefine the shape of the limb and
encouraging improved venous and lymphatic drainage helping to prevent
aching, providing exercise is pursued.
Lymphoscintigraphy can distinguish swelling due to lymphoedema from
lipoedema. The test involves injecting a very small amount of radioactive
material between the toes of the affected limbs. The radioactive tracer is
monitored as it is taken up by the lymph glands. If the individual has
lymphoedema, this test usually demonstrates that the lymphatic collecting
channels are abnormal. In lipoedema, lymph drainage routes are patent and
Liposuction is a commonly undertaken procedure for excess fat (and even in
certain cases of lymphoedema). It is best used for localised areas and not
over large regions such as a limb. The likelihood of achieving an even
effect (liposculpture) is small and cosmetically there may be no
still largely unavailable to many individuals with lipoedema, through a lack
of understanding as to the causes of the condition. Research continues to
play an important part in helping to find a cause. The Lipoedema Study Group
is undertaking one such study at St George's Hospital Medical School in
London. Through the use of blood samples given by individuals with lipoedema,
this study aims to identify genes that can predispose an individual to
develop lipoedema within their lifetime. Currently this study is in the
early stages, but it is anticipated over the next few years enough families
with one or more affected relatives will be located to provide the necessary
blood samples for genetic analysis. Individuals can either be referred to
the study by their GP or can contact Miss Pip Sharpe, Research Nurse.
It is hoped that the study will help to bring further awareness of lipoedema
and help individuals with the condition to cope better both physically and
psychologically with its effects.
conclusion, it has been shown how hard it is to make an accurate diagnosis
of lipoedema. Often, individuals will present with a combination of signs
and symptoms, which may overlap with lymphoedema, making a straightforward
diagnosis very difficult. The key factor to come out of the research so far
has been that individuals with a diagnosis of lipoedema need to have both
physical and psychological support to help them overcome the mental anguish,
which accompanies the abnormally large limbs. These individuals need to know
that they are not 'going mad' and that they are not primarily obese, which
is very often definitely not the case.
Lipedema – what do we know?
Professor Horst Weissleder
Allen and Hines described in 1940 (1) “a clinical syndrome, lipedema of the
legs, which is frequently very distressing. In our experience it affects
solely women. The chief complaint is of swelling of the legs and feet. On
questioning, the physician may elicit that enlargement of the limbs has
always been generalized and symmetrical. The swelling below the knees is
accentuated when patients are on their feet much and in warm weather. Aching
distress in the legs is common.”
Since then most of the articles dealing with lipedema have been published in
Lipedema (painful fat syndrome) can be defined as a chronic disease that
occurs in female patients and is characterized by bilateral, symmetrical
fatty tissue augmentation mainly in the hip region and upper and lower leg
combined with a tendency to orthostatic edema. In male patients lipedema is
extremely rare (2).
Fat cells have a spherical shape and like any other cells contain fat
deposits covered by a micro filament-reinforced cell membrane. Groups of fat
cells form lobes which are surrounded by fibrous tissue. The septa between
the lobes contain blood and lymph vessels and nerves. Fatty tissue has an
excellent blood supply but fat cell-associated lymph capillaries are not
present. Lipedema is likely triggered by a microangiopathy with an increased
fragility of the blood capillaries. The increased capillary permeability
then leads to a protein-rich intercellular edema. In subsequent stages,
inflammation sets in leading to perivascular fibrosis, afew areas of fatty
tissue necrosis, oil cysts and an increase in the number of the macrophages.
Prominent mast cell recruitment and other inflammatory effects eventually
lead to interstitial fibrosis (4).
Right now, the pathogenesis of lipedema and other types of fatty tissue
enlargement (lipohypertrophy and obesity) is still unclear. According to the
literature, the regulation of the fat metabolism seems to be a very complex
process. There might be interaction with the nervous system, different
hormones and the microcirculation (3). Genetic factors may play a role too.
Details regarding the connections of the different systems and the possible
influence of drugs have yet to be clarified. In addition, it is not known
exactly if the increase of fatty tissue is caused by hypertrophy or
hyperplasia of the fat cells (adipocytes). An increased blood flow and an
increased angiomotoricity support fat reduction. In contrast a reduced blood
flow seems to increase the storage of fat. The same may be true in cases of
a reduced lymph flow.
Basic diagnostic procedures including medical history, inspection and
palpation and additional laboratory tests provide the basis for further
examinations that might be necessary to finally assess the disease. In most
cases, lipedema (symmetrical, pillar like volume augmentation) develops
during puberty or some years later. Heavy hips and thighs are obvious signs.
Women with lipedema frequently complain about pain by compression
independent of the extent of fatty tissue proliferation. Small injuries that
cause no macroscopic lesions in healthy people can result in hematoma due to
an increased fragility of the blood vessel wall. When the lymphatic system
is not damaged the feet are normal and the Stemmer sign negative. Lipedema
is frequently seen in female relatives (e.g. mother, grandmother, sisters).
Based on inspection and palpation lipedema can be graded into three stages:
Stage I: has a normal skin surface. The subcutaneous fatty tissue has a soft
consistency but multiple small nodules can be palpated. This stage can last
for several years.
Stage II: the skin surface becomes
uneven and harder due to the increasing nodular structure (big nodules) of
the subcutaneous fatty tissue (liposclerosis).
Stage III: is characterized by
lobular deformation due to increased fatty tissue. The palpable nodules
varying in size from a walnut up to a fist and can be distinguished from the
surrounding tissue by palpation. When the skin is pushed together, the so
called peau d’orange or mattress phenomenon can be demonstrated.
The most common mistake in the assessment of lipedema is diagnosis as
lymphedema. The false diagnosis is usually based on the fact that the entire
set of lipedema symptoms are often not known and cannot be found in many
textbooks. Therefore, massive lipedematous volume increases in the legs are
commonly diagnosed as obesity or lymphostatic elephantiasis (7, 8). On the
other hand lipedema can be seen quite often combined with other diseases
e.g. obesity, chronic venous insufficiency and lymphedema. With
lipo-lymphedema, the tissue is indurated and pretibial indentations can be
made. Contrary to simple lipedema, the regions of the ankle and the dorsal
foot are edematous. Natural skin creases are deepened and a positive Stemmer
sign confirms damage of the lymphatic system (7, 8).
Up till now lipedema could only be treated using conservative methods with
complex physical therapy and exercises. By this, a reduction of edema and a
decrease or elimination of tension and pain could be reached. Nowadays the
increased fat volume can be removed by surgical therapy with liposuction in
tumescent local anesthesia. However, an existing lymphangiopathy must be
considered as a contraindication. Liposuction is the most frequently used
cosmetic procedure not only in the United States but also in Germany.
Cosmetic surgery is lucrative and is increasingly being performed by
non-plastic surgeons and non-physicians, some of whom have little more
experience than a weekend seminar. The public perception of this cosmetic
procedure as minor cosmetic surgery fails to consider the possibility that
major complications may result from this which could cause fatal outcome
according to recent publications. Therefore it is strongly recommended that
liposuction in lipedema be performed only in specialized centers using
modern techniques (5, 6). Finally, it should be mentioned that lipedema is
not caused by excessive consumption of calories; hence calorie reduction
will not be beneficial. Dietary measures are advised only with obesity.
Allen E V, Hines E A, Lipoedema of the legs. A syndrome characterized by fat
legs and edema. Proc Staff. Meat. Mayo Clinic 1940; 15:184
2) Chen, S. G., Hsu, S. D., Chen, T. M., Wang, H. J. Painful fat syndrome in
a male patient. Br J Plast Surg 2004;57(3):282-286
3) Fasshauer,M., Klein J., Blueher M., Paschke R., Adipokine: Moegliches
Bindeglied zwischen Insulinresistenz und Adipositas.Dtsch Arztebl
4) Kaiserling E. Morphologische Alterationenen, in M.Foeldi, S.Kubik,
Lehrbuch der Lymphologie, 5.Auflage, Urban & Fischer 2002
5) Lehnhardt, M. Homann,H.H., Druecke, .
D., Palka, P., Steinau, H.U. Liposuktion–kein Problem?
Majorkomplikationen und Todesfälle im deutschsprachigen Raum zwischen 1998
und 2002. LymphForsch 2004;8(2):74-78
6) Schmeller W., Meier-Vollrath I. Moderne Therapie des Lipödems:
Kombination von konservativen und operativen Maßnahmen. LymphForsch
7) Stroessenreuther R.H.K. Lipoedem und Cellulitis. Koeln, Viavital 2001
8) Weissleder H. , Schuchhardt C., Lipedema in H.Weissleder,
C.Schuchhardt, ed. Lymphedema – Diagnosis and Therapy. Köln, Viavital
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not sponsored or supported by any company or healthorganisation.
Do you like my work, please be so kind to give me € 1,00. (1 dollar/euro/pound)
More or less is
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perfect not to be perfect
elderly Chinese woman had two large pots, each hung on the ends of a pole
which she carried across her neck. One of the pots had a crack in it while
the other pot was perfect and always delivered a full portion of water. At
the end of the long walk from the stream to the house, the cracked pot
arrived only half full.
For a full two years this went on daily, with the woman bringing home only
one and a half pots of water. Of course, the perfect pot was proud of its
accomplishments. But the poor cracked pot was ashamed of its own
imperfection, and miserable that it could only do half of what it had been
made to do.
After 2 years of what it perceived to be bitter failure, it spoke to the
woman one day by the stream. "I am ashamed of myself, because this crack in
my side causes water to leak out all the way back to your house." The old
woman smiled, "Did you notice that there are flowers on your side of the
path, but not on the other pot's side? That's because I have always known
about your flaw, so I planted flower seeds on your side of the path, and
every day while we walk back, you water them." "For two years I have been
able to pick these beautiful flowers to decorate the table. Without you
being just the way you are, there would not be this beauty to grace the
Each of us has our own unique flaw. But it's the cracks and flaws we each
have that make our lives together so very interesting and rewarding. You've
just got to take each person for what they are and look for the good in them.
all of my crackpot friends, have a great day and remember to "smell the
Do you live in Australia?
Nancci (from Perth)realy likes
to mail with other Lipedema patients
This website is independend, this means I am
not sponsored or supported by any company or healthorganisation.
Do you like my work, please be so kind to donate € 5,00. (5 dollars/euro/pound)
NL43 RABO 0395 4569 32
to T.H. Smidt in Almere. The
If you want to have a CD with about 30 medical articles (in German and English),
€ 15,00 to T.H. Smidt in Almere
My Bank is
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