Key Words: lipedema, lipoedema, lipodema, lipodystrophy, lipadema, lipo-lymphedema, painful fat syndrome
What is lipedema:
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.
Unknown, genetic involvment suspected
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 limbs.
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.
Lipedema 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.
Proceed to Section B only if the answer is Yes to at least one of the following: 1. Pattern of fat concentrated in abdomen and thighs (pear shape)? 2. Ankles and feet, AND/OR wrists and hands are smaller than would be expected for the weight on the remainder of the body? 3. Reports consistent difficulty in losing weight after just one to four weeks of initial success?
Proceed to Section C if: A. The answer to two or more of the first six questions is Yes; and/or B. The answer to one or both of questions 7 or 8 is Yes; and/or C. The patient is under 30, and the answer is yes to two or more of questions 9-12, and at least one of questions 1-8.
1. Based on your clinical experience, is this person's weight higher than you would have expected? 2. Is there adipose tissue evident in the affected areas, particularly the abdomen and/or the thighs? (cottage cheese skin extending below the buttocks) 3. Is there evidence of a weakened immune system (frequent colds, bronchial infections, onset of asthma, etc.) which is not otherwise explained? 4. Are there joint pains which cannot be otherwise explained (eg. Symptoms similar to gout, without high uric acid levels; pain in the knee, without evidence of arthritis or rheumatic condition). 5. Is the pattern of weight in each leg symmetrical? 6. Does the patient report pain emanating from the adipose tissue, particularly when pressure is applied?
9. Is there a family history of thyroid or hormonal disorders? 10. Is there evidence of flat feet? 11. Is there evidence of papilloma (skin tags) or peau d'orange skin (rough, resembling an orange peel), particularly between the thighs? 12. Is there a family history of obesity that is concentrated among female relatives (cousins, siblings, parents, children, aunts), or is there a diagnosis of lipoedema or lipo-lymphoedema among any close relatives?
In the above, questions 1-6 relate to both lipoedema and lipo-lymphoedema. Questions 7 and 8 relate more closely to lipo-lymphoedema. Questions 9-12 relate to indicators commonly reported by those with one of these conditions.
Continue to this section only if indicated by Section B.
Lipoedema or lipo-lymphoedema (if pitting edema or significant ankle/foot edema is present) should be suspected. Follow up with a one week treatment regimen involving 1.5 hour daily manual lymphatic drainage (MLD), accompanied by day and night-time compression bandaging using short stretch bandages. Treat the leg with the largest measurements. Compare measurements of the treated leg to its pre-treatment size, as well as to the untreated leg.
If treatment results in a reduction in limb volume in the treated limb, follow up with complex decongestive therapy regimen (MLD, short stretch bandaging, skin treatment, and compression garments following the completion of treatment). For lipoedema, the normal treatment period is 2-4 weeks with 1 - 1.5 hours of treatment daily, six days per week. For lipo-lymphoedema, the normal treatment period is 3-4 weeks with 1.5 - 3 hours of treatment daily, 6-7 days per week.
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.
From a member post by “Itobo” of UK Lymph Forums
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.
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.
Secondary 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 elevation.
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. When 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 response.
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.
1. Swelling is a-symmetrical. Indeed, often only one limb is affected, and the swelling clinically apparent (Fig. 5.). If a leg is lymphoedematous the foot is involved. The hand is usually involved with primary lymphoedema of the arm. Lymphoedema all over may present as more symmetrical but the feet are involved from onset.
2. In the early stages pitting may be present and it may reduce with elevation.
4. Stemmer's sign is positive.
5. The limb does not bruise easily, as it does in lipodema.
6. Skin temperature is higher in the lymphoedematous limb/s.
7. “Pins and Needles” are rare in primary lymphoedema, (although both these and paraesthesia may occur in secondary lymphoedema). Venous return is usually normal.
8. Dieting will not reduce primary lymphoedema.
9. Knee joints may be affected by both lymphoedema and extra leg weight and may cause pain such as arthritis. The condition is often diagnosed as this and under investigation is pathologically similar.
As lymphoedema progresses from Grade I, there is excess fibrotic tissue (collagen), adipose tissue, (especially in primary lymphoedema), and a proliferation of other cellular and interstitial tissue elements. The limb ceases to pit with pressure, feels hard to the touch and much less “rubbery” than pure lipodema. As with lipodema, diagnosis can be clarified both with case histories and lymphoscintigraphy.
Lymphoedema can cause psychological problems as well as lipodema. These range again from concern and depression about appearance, to anxiety about the worsening of the condition and of infection, to depression, break-up of relationships with partners, especially if genital lymphoedema is involved etc. etc. This is balanced by the fact that many patients are now aware that some forms of treatment can be obtained, especially if they can afford it, or have Health Cover to assist them. In many areas the public patient is very poorly catered for. Despite these problems lymphoedema patients are usually less “psychologically fragile” than those with lipodema, partly due to the psychological abuse and mockery that many of the latter have suffered.
Complex decongestive therapy (skin care, lymphatic drainage by massage, compression and exercises) are accepted as the best treatment for lymphoedema. Because of the inadequate lymphatic drainage and lack of nodes and with abnormal and fewer lymphatic vessels, drainage needs to be taken to truncal quadrants where lymphatic drainage is more normal. This of course depends on the individuals situation. What drainage that does exist in a limb should also be enhanced by massage. Pumps should never be used in primary lymphoedema. Surgery, unless in very skilled hands, is seldom beneficial in the long term.
THE LYMPHOEDEMA ASSOCIATION OF AUSTRALIA, INC.
Source Unité de lymphologie, centre national de référence des maladies vasculaires rares (lymphœdèmes primaires), hôpital Cognacq-Jay, 15, rue Eugène-Millon, 75015 Paris, France.
Lipedema is a clinical entity frequently misdiagnosed or confound with primary lymphedema. Lipedema is a disorder of adipose tissue that occurs almost exclusively in obese women. It is characterized by bilateral enlargement from hip to ankle due to abnormal depositions of subcutaneous fat associated with often mild edema, usually sparing the feet. Disease onset is usually at or soon after puberty. Lipedema results in considerable frustration and distress resulting from the cosmetic appearance. Patients may complain of pain, tenderness, easy bruising of the affected areas with moderate to severe sensitivity to digital pressure or pinching. Imaging studies using computed tomography, magnetic resonance imaging, ultrasound, lymphoscintigraphy are not indicated, except if the diagnosis is atypic or doubtful. Long-term evolution may alter lymphatic system and lead to a lipo-lymphedema with specific complications such as cellulitis. Lipedema management is not codified and included weight loss (poorly improving leg appearance or discomfort), psychological counselling and compression therapy. Liposuction, especially using tumescent local anaesthesia, may reduce edema, spontaneous pain, sensitivity to pressure, bruising and improve appearance resulting in a important increase in quality of life.
RehaClinic Bad Zurzach, Switzerland. email@example.com
Lymphedema and lipedema are chronic progressive disorders for which no causal therapy exists so far. Many general practitioners will rarely see these disorders with the consequence that diagnosis is often delayed. The pathophysiological basis is edematization of the tissues. Lymphedema involves an impairment of lymph drainage with resultant fluid build-up. Lipedema arises from an orthostatic predisposition to edema in pathologically increased subcutaneous tissue. Treatment includes complex physical decongestion by manual lymph drainage and absolutely uncompromising compression therapy whether it is by bandage in the intensive phase to reduce edema or with a flat knit compression stocking to maintain volume.
Warren Peled A, Slavin SA, Brorson H.
From the *Division of Plastic and Reconstructive Surgery, University of California-San Francisco, San Francisco, CA; †Division of Plastic and Reconstructive Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA; and ‡Department of Plastic and Reconstructive Surgery, Malmö University Hospital, Lund University, Malmö, Sweden.
Lipedema is a condition characterized by abnormal deposition of adipose tissue in the lower extremities leading to circumferential bilateral lower extremity enlargement typically seen extending from the hips to the ankles. Diagnosis of the condition is often challenging, and patients frequently undergo a variety of unsuccessful therapies before receiving the proper diagnosis and appropriate management. Patients may experience pain and aching in the lower extremity in addition to distress from the cosmetic appearance of their legs and the resistance of the fatty changes to diet and exercise. We report a case of a patient with lipedema who was treated with suction-assisted lipectomy and use of compression garments, with successful treatment of the lipodystrophy and maintenance of improved aesthetic results at 4 years' postoperative follow-up.
Pascucci A, Lynch PJ.
Arrowhead Regional Medical Center, Colton, California, USA.
Lipedema is an underdiagnosed syndrome of unclear etiology, characterized by symmetric painful enlargement of the buttocks and lower extremities, which spares the feet. This enlargement is caused by the deposition of adipose tissue. It was first described by Allen and Hines in 1940, who observed that it had a female predilection; patients commonly had an associated family history. We describe a patient with classic lipedema and multiple lipomas of her arms and trunk.
Journal of the German Dermatologi society Volume 2 Issue 3 PAGE 181 - March 2004 doi:10.1046/j.1439-0353.2004.04051.x
Due to the lifelong, usually progredienten process and the pronounced suffering pressure the Lipoedema is an important dermatologisches disease picture. By years ago the complexes introduced as standard treatment physical Entstauungs therapie can be obtained a clear acceptance of illness-typical edemas. As new effective procedure the Liposuction in Tumeszenz local anaesthesia with vibrating Mikrokanuelen proved. A purposeful and durable reduction of the disproportionate Fettgewebsanteile help the concerning due to the improved appearance, the edema reduction and the pain removal to a pronounced improvement of the quality of life.
Because OF the lifelong and often progressive course and the mentally trauma on the patients, lipoedema is important on dermatologic more disorder. Complex physical therapy programs were introduced as A standard therapy years ago and CAN achieve to impressive oedema reduction. Liposuction in tumescent local anesthesia with vibrating microcannulas has proved tons A new effective treatment. A targeted and permanently reduction OF the fat tissue leads tons on increased quality of life due ton on improved appearance, reduced tendency tons swelling and less pain.
Wollina U, Goldman A, Heinig B.
Department of Dermatology and Allergology, Academic Teaching Hospital of the Technical, University of Dresden, Dresden, Germany. firstname.lastname@example.org
AIM: We evaluated the outcome and risks of tumescence liposuction in patients with advanced lipedema or Dercum's disease.
METHODS: Six patients treated at a single center during the years 2004 to 2008 have been included. All patients were female and obese (body mass index 34 to 41.9; mean 38.2+/-3.8) with an age range from 29 to 78 years (mean 55.7+/-20.5 years), five of them had co-morbidities.
RESULTS: The total amount of lipoaspirates varied between 1500 mL and 4800 mL. Pain could be reduced in all four patients with Dercum's disease. Large adipose tissue removing implies a better the outcome for pain. Patient's satisfaction was “high” or “very high” in 5 and “medium” in one. The most common adverse effect was met-hemoglobulinemia (N.=4).
CONCLUSION: Tumescence liposuction is a treatment option for lipedema and Dercum's disease. With careful monitoring the procedure is safe even for patients in advanced stages, higher age and with co-morbidities.
Microvasc Res. 2009 May
Lohrmann C, Foeldi E, Langer M. Department of Radiology, University Hospital of Freiburg, Hugstetter Strasse 55, D-79106, Freiburg i. Br., Germany. email@example.com
Keywords: Lipedema; Lipo-lymphedema; MRI; Lymphangiography; Microcirculation
OBJECTIVE: To assess for the first time the morphology of the lymphatic system in patients with lipedema and lipo-lymphedema of the lower extremities by MR lymphangiography.
MATERIALS AND METHODS: 26 lower extremities in 13 consecutive patients (5 lipedema, 8 lipo-lymphedema) were examined by MR lymphangiography. 18 mL of gadoteridol and 1 mL of mepivacainhydrochloride 1% were subdivided into 10 portions and injected intracutaneously in the forefoot. MR imaging was performed with a 1.5-T system equipped with high-performance gradients. For MR lymphangiography, a 3D-spoiled gradient-echo sequence was used. For evaluation of the lymphedema a heavily T2-weighted 3D-TSE sequence was performed.
RESULTS: In all 16 lower extremities (100%) with lipo-lymphedema, high signal intensity areas in the epifascial region could be detected on the 3D-TSE sequence. In the 16 examined lower extremities with lipo-lymphedema, 8 lower legs and 3 upper legs demonstrated enlarged lymphatic vessels up to a diameter of 3 mm. In two lower legs with lipo-lymphedema, an area of dermal back-flow was seen, indicating lymphatic outflow obstruction. In the 10 examined lower extremities with clinically pure lipedema, 4 lower legs and 2 upper legs demonstrated enlarged lymphatic vessels up to a diameter of 2 mm, indicating a subclinical status of lymphedema. In all examined extremities, the inguinal lymph nodes demonstrated a contrast material enhancement in the first image acquisition 15 min after injection.
CONCLUSION: MR lymphangiography is a safe and accurate minimal-invasive imaging modality for the evaluation of the lymphatic circulation in patients with lipedema and lipo-lymphedema of the lower extremities. If the extent of lymphatic involvement is unclear at the initial clinical examination or requires a better definition for optimal therapeutic planning, MR lymphangiography is able to identify the anatomic and physiological derangements and to establish an objective baseline.
Lymphology. 2008 Dec
Szolnoky G, Nagy N, Kovács RK, Dósa-Rácz E, Szabó A, Bársony K, Balogh M, Kemény L. Department of Dermatology and Allergology, University of Szeged, Hungary. firstname.lastname@example.org
Lipedema is a disproportional obesity featuring frequent hematoma formation due to even minor traumatic injuries. On the basis of clinical observations, complete decongestive physiotherapy diminishes the incidence of hematomas due to minor injuries beyond leg volume reduction. Hematoma development may be caused by altered capillary resistance (CR) or altered capillary fragility (CF). We measured capillary fragility (CF) before and after complex decongestive physiotherapy (CDP) to examine, whether CDP could reduce CF. 38 women with lipedema were included in the study. Twenty-one (21) patients were treated with CDP and 17 using exclusively moisturizers as the control group. CDP comprised once daily manual lymph drainage, intermittent pneumatic compression and multilayered short-stretch bandaging performed throughout a 5-day-course. CF was evaluated with the vacuum suction method (VSM) using Parrot's angiosterrometer in both groups. Decongestive therapy resulted in a significant reduction of the number of petechiae while no change was detected within the control group. Complete decongestive physiotherapy significantly reduced CF in patients with lipedema and this reduction may lead to reduced hematoma formation.
PMID: 19306662 PubMed - indexed for MEDLINE
J Cutan Pathol. 2009 Mar 3.
Suga H, Araki J, Aoi N, Kato H, Higashino T, Yoshimura K. Department of Plastic Surgery, University of Tokyo Graduate School of Medicine, Tokyo, Japan.
Lipedema is a disease with unknown etiology presenting as bilateral and symmetric enlargement of the lower extremities due to subcutaneous deposition of the adipose tissue. Here we describe the histopathological features of the lipedema tissue and nonaffected adipose tissue obtained from a typical patient with severe lipedema. Immunohistochemical analyses indicated degenerative and regenerative changes of the lipedema tissue, characterized by crown-like structures (necrotizing adipocytes surrounded by infiltrating CD68+ macrophages; a feature commonly seen in obese adipose tissue) and proliferation of adipose-derived stem/progenitor/stromal cells (Ki67+CD34+ cells), respectively. These findings suggested increased adipogenesis in the lipedema tissue, which may further lead to hypoxia similar to that seen in obesity, resulting in adipocyte necrosis and macrophage recruitment. The confinement to the lower extremities and the difference from systemic obesity warrants further elucidation in future studies. Suga H, Araki J, Aoi N, Kato H, Higashino T, Yoshimura K. Adipose tissue remodeling in lipedema: adipocyte death and concurrent regeneration.
Orv Hetil. 2008 Nov 9
Wenczl E, Daróczy J. Fovárosi Onkormányzat Egyesített Szent István és Szent László Kórház és Rendelôintézet, Bôrgyógyászati és Limfológiai Rehabilitációs Osztály, Budapest. email@example.com
Lipedema is a common but rarely diagnosed disease or frequently confused with obesity. Patients are almost exclusively women. It is characterised by symmetrical, circumscribed, in advanced form deforming fat tissue accumulation on the legs that is associated with lymphedema. Spontaneous pain, pain to pressure and tendency to hematoma are characteristic. One of the possible causes of a fat leg, that is a very common complaint, is lipedema. Main differential diagnoses are obesity, lipohypertrophy and primary and secondary lymphedema. It is often associated with chronic venous and lymphatic insufficiency, early degenerative articular disease and obesity. The disease is rarely recognized and the treatment modalities are not widely known. Therefore patients feel very frustrated that leads to psychologic disorders. Until recently only conservative treatment was possible (combination of manual or intermittent pneumatic drainage, compression bandages and garments and physiotherapy). More recently surgical intervention (liposuction) is also included in the treatment options. The significance of lipedema is due not only to the disease itself, but also to the combination of lipedema and the group of associated and secondary diseases (articular and venous diseases, lymphedema, obesity, psychologic disorders). The more diseases coexist, the worse is the prognosis of lipedema itself. To prevent and delay this disease, it is indispensable to recognise it as early as possible and to treat it expertly and follow up patients suffering from lipedema.
Angiology. 1995 Apr
Bilancini S, Lucchi M, Tucci S, Eleuteri P. Centro Studi Malattie Vascolari J. F. Merlen, Frosinone, Italy.
Lipedema is a chronic vascular disease almost exclusively of female not allowed, characterized by the deposit of fat on the legs, with an “Egyptian column” shape, orthostatic edema, hypothermia of the skin, alteration of the plantar support, and negativity of Stemmer's sign. The etiology and pathogenesis of this disease are still the object of study, and therapy is very difficult. Various authors have described morphologic and functional alterations of prelymphatic structures and of lymphatic vessels. The big veins remain untouched in the phlebograms and an alteration of the skin elasticity is demonstrated. The present authors have studied by dynamic lymphoscintigraphy 12 women patients suffering from lipedema, and compared the results with those of 5 normal subjects and 5 patients suffering from idiopathic lymphedema who were not allowed and age matched with the patients suffering from lipedema. The patients suffering from lipedema showed an abnormal lymphoscintigraphic pattern with a slowing of the lymphatic flow that presented some analogies to the alterations found in the patients suffering from lymphedema. A frequent asymmetry was also noticed in the lymphoscintigraphic findings that is in contrast to the symmetry of the clinical profile.
PMID: 7726454 [PubMed - indexed for MEDLINE]
J Mal Vasc. 2004 Dec; Boursier V, Pecking A, Vignes S. Unite de Lymphologie, Hopital Cognacq-Jay, Site Broussais, 102 rue Didot, 75674 Paris Cedex 14, France.
Lipedema is characterized by bilateral enlargement of the legs due to abnormal deposition of fat tissue from pelvis to ankles. It is seen most frequently in obese women. Lipedema appears to be a distinct clinical entity but may be confounded with lymphedema.
AIM OF THE STUDY: To analyze and to compare between lipedema and lymphedema the qualitative and quantitative aspects of lymphoscintigraphy.
METHODS: Fifteen women with lipedema were recruited. Mean age of onset of lipedema was 31.5 +/- 15 years. Body mass index was 35.1 +/- 7.9 kg/m2, 13 women were obese. Lipedema was compared to 15 cases of primary lymphedema (women: 13, men: 2) of the lower limbs (unilateral: 13, bilateral: 2), with a mean age at onset of 28.7 +/- 12.6 years. Lymphoscintigraphy of the lower limbs with morphologic (visualization of inguinal lymph nodes) and kinetic (half-life, lymphatic speed of the colloid) studies was performed in all cases.
RESULTS: Absence of visualization of inguinal lymph nodes was observed in 14/15 cases of lymphedema and in 1/15 cases of lipedema (p<0.001). In the 13 cases of unilateral lymphedema, colloid half-life was higher in the pathologic limb than in the controlateral limb (230 +/- 92 vs 121 +/- 36 minutes, p<0.01) and lymphatic speed of the colloid was slower (6.91 +/- 0.86 vs 8.16 +/- 1.02 cm/min, p<0.001). The two patients with bilateral lymphedema had an increased half-life and decreased lymphatic speed of the colloid. Colloid half-life was significantly higher in lipedema than in controlateral limbs of lymphedema (154 +/- 23 vs 121 +/- 36 minutes, p<0.01) with no difference in lymphatic speed of the colloid. Colloid half-life was significantly higher in lymphedema than in lipedema (230 +/- 92 vs 154 +/- 23 minutes, p<0.01) and the lymphatic speed of the colloid was slower (6.91 +/- 0.86 vs 8.10 +/- 0.45 cm/min, p<0.001).
CONCLUSION: Lower limb lymphoscintigraphy showed lymphatic insufficiency in lipedema without morphologic abnormality as seen in lymphedema. Lymphoscintigraphy is not indispensable but is a useful tool when diagnosis is doubtful. Treatment is difficult and may include weight loss and possible surgery.
Harwood CA, Bull RH, Evans J, Mortimer PS.
Department of Dermatology, St George's Hospital, London, U.K.
Lipoedema is a common but infrequently recognized condition causing bilateral enlargement of the legs in women. Although generally considered to be the result of an abnormal deposition of subcutaneous fat with associated oedema, the precise mechanisms responsible for oedema formation have yet to be fully established. In order to evaluate the possible role of lymphatic or venous dysfunction in the pathogenesis of lipoedema, 10 patients were investigated by photoplethysmography (venous function) and quantitative lymphoscintigraphy (lymphatic function). The results were compared with those from patients with primary lymphoedema and those from healthy volunteers. The results demonstrated minor abnormalities of venous function in only two patients. One patient had moderately impaired lymphatic function in both legs and seven patients had a marginal degree of impairment in one or both legs. However, in none of these cases did the impairment attain the low levels seen in true lymphoedema. Lipoedema appears to be a distinct clinical entity best classified as a lipodystrophy rather than a direct consequence of any primary venous or lymphatic insufficiency.
Publication Types: Clinical Trial Controlled Clinical Trial PMID: 8745878 [PubMed - indexed for MEDLINE]
Lipedema, Lipedema, Lipoedema
Author(s): P.A. Bacci , F. Albergati Author Affiliation(s): University of Siena, Siena, Italy
OBJECTIVE(s): Lipoedema and lipo-lymphedema are aesthetic pathologies and real infirmities with various etiologies. Thus, they require precise classification of the various pathological forms and then suitable integrated treatment with various methods
METHOD(s): Recent experience has shown the scientific worth of four major treatments whose integration offers the best possible solution:
Carboxy therapy enables tissue vascularization and lipolysis.
Nutritional Proteinotherapy produces ketosis for brief periods, eliminating fat, increasing tissue and maintaining water and trace elements.endermologie®, carried out by physiotherapists, allows connective tissue to increase and subsequent restructuring of the tissue, as well as reshaping of the panniculus adiposus.
Basic medical treatment employs anti-oxidizing, phlebotomical agents or stimulation of the metabolism of the interstitial matrix using drugs of functional medicine.
CONCLUSION(s): The interstitial matrix is the first moment of any pathological event of the venolymphatic system and requires a good diagnosis and therapy.
Link no longer valid
Chen SG, Hsu SD, Chen TM, Wang HJ.
Division of Plastic and Reconstructive Surgery, Department of Surgery, Tri-Service General Hospital, National Defense Medical Center, No. 325, Section 2, Cheng-Gung Road, Taipei 100, Taiwan, ROC. firstname.lastname@example.org
Painful fat syndrome or lipoedema is a distinct clinical condition, characterised by bilateral and symmetrical enlargement of the upper and lower leg with tenderness, but excluding the feet. Lipoedema occurs almost exclusively in females, and no male patient has been reported in the literature published in English. We report on an extremely rare presentation of lipoedema in a male patient. A thorough study based on the case history, physical manifestations, and magnetic resonance imaging (MRI) provided valuable clues for a differential diagnosis. Conservative treatment using weight reduction, compression-stocking application, and diuretic therapy was not effective. Tumescent liposuction with postoperative pressure garments provided a satisfactory treatment.
Publication Types: Case Reports PMID: 15006533 [PubMed - indexed for MEDLINE]
Taylor NE, Foster WC, Wick MR, Patterson JW.
Department of Pathology, University of Virginia Health System, Charlottesville, VA, USA.
BACKGROUND: Lipedema is a condition characterized by diffuse, bilaterally symmetrical, painful swelling of the legs and buttocks. Microscopically, there are dermal and septal edema, adipocyte degeneration, and numerous mast cells, features held in common with lipedematous alopecia. CASE REPORT: We present the case of a 60-year-old woman with a long history of bilateral leg masses with microscopic features of lipedema. In addition, elastic-fiber changes typical of pseudoxanthoma elasticum (PXE) were discovered within the subcutaneous septa in three separate specimens obtained from an affected extremity. The patient did not have other clinical findings of PXE, although there was a history of both hypertension and congestive heart failure. CONCLUSION: This tumefactive presentation of lipedema has not been previously described. Regarding the elastic-tissue abnormalities, the patient could have either a subclinical form of PXE, perhaps predisposing to lipedema, or secondary elastic-tissue changes resulting from the massive edema. If the latter is the case, then this could represent an unusual manifestation of localized acquired cutaneous PXE (calcific elastosis).
Publication Types: Case Reports PMID: 14690469 [PubMed - indexed for MEDLINE]
Lymphology. 2001 Dec Amann-Vesti BR, Franzeck UK, Bollinger A. Department of Internal Medicine,University Hospital, Zurich, Switzerland. email@example.com
“Lipedema,” a special form of obesity syndrome, represents swelling of the legs due to an increase of subcutaneous adipose tissue. In 12 patients with lipedema of the legs and in 12 healthy subjects (controls), fluorescence microlymphography was performed to visualize the lymphatic capillary network at the dorsum of the foot, at the medial ankle, and at the thigh. Microaneurysm of a lymphatic capillary was defined as a segment exceeding at least twice the minimal individual diameter of the lymphatic vessel. In patients with lipedema, the propagation of the fluorescent dye into the superficial lymphatic network of the skin was not different from the control group (p > 0.05). In all 8 patients with lipedema of the thigh, microaneurysms were found at this site (7.9 +/- 4.7 aneurysms per depicted network) and in 10 of the 11 patients with excessive fat involvement of the lower leg, multiple microlymphatic aneurysms were found at the ankle region. Two obese patients showed lymphatic microaneurysms in the unaffected thigh and in only 4 patients were microaneurysms found at the foot. None of the healthy controls exhibited microlymphatic aneurysms at the foot and ankle, but in one control subject a single microaneurysm was detected in the thigh. Multiple microlymphatic aneurysms of lymphatic capillaries are a consistent finding in the affected skin regions of patients with lipedema. Its significance remains to be elucidated although its occurrence appears to be unique to these patients.
PMID: 11783595 [PubMed - indexed for MEDLINE]
01/03/05 Breu FX, Marshall M. Phlebologie. 2000;29:124-128.
Differentiation of lower-limb lymphedema from lipedema and simple swelling of venous insufficiency is a difficult problem for most practitioners. Even experienced angiologists may have difficulties in establishing a proper diagnosis, especially in the advanced stages of the diseases. The present authors present their experience in compression-sonography, which facilitated discrimination between lymphedema and lipedema. They used a new 13-MHz linear probe that allowed demarcation of skin from subcutaneous tissues, facilitated subcutis thickness measurement, and demonstrated changes in echogenicity produced by tissue compression.
Painful lipedema showed increased echogenicity and could be compressed only 10% to 20%, while the nonpainful lipedema was compressible up to 50%. There was a direct relationship between pain produced by the probe and compressibility of tissue. Skin and muscles were not compressible. Lymphedematous tissues were nonechogenic, noncompressible, and not painful. Echolucent confluent gaps without color coding were characteristic of dilated lymphatics. All venous structures were compressible, even by slightly pressing the sonographic probe.
COMMENTARY: Duplex sonography has always been an extremely useful diagnostic tool for differentiation between lymphedema and simple edema of venous insufficiency, especially in the early stages of both conditions. Now, it appears that it will be of value in differentiation of lymphedema from so-called lipedema. Diagnosis of lipedema is important not only for the angiologist therapeutic decision-making, but also for the patient. Ultrasound examination may convince the patient that the lymphatics are not damaged, and prognosis with respect to increases in limb volume and developing inflammatory complications is good. It may also show that pharmacological treatment is not necessary and that elastic compression may be prescribed.
However, some patients will ask for lymphoscintigraphy, to be absolutely sure that lymph vessels have not been affected. I usually combine both diagnostic methods and do it routinely in advanced stages of swelling in obese patients.
The story becomes more complicated when excessive fatty tissue is found in lymphedematous legs. The pathologic mechanisms of adipose tissue formation in limbs with lymphedema has not been clarified to date. Adipocytes accumulate water, but not much protein. What other factors are involved remains unknown.
Normal fat tissue composed of large adipocyte lobules bathing in tissue fluid is evidenced during debulking surgery of lymphedematous limbs, especially in young patients. This fluid may be mistaken on duplex sonography for dilated lymphatics.
Although ultrasonography of tissues remains an invaluable diagnostic tool, it should be combined with lymphoscintigraphy and physical examination of the limb to define the topography of edema. To take one example, in lipedema, the foot is usually free of swelling.
Prof Waldemar L. Olszewski, Warsaw, Poland
Lymphedema and Lipedema
Plast Reconstr Surg. 2007 Jan;119(1):9e-15e
Warren AG, Janz BA, Borud LJ, Slavin SA.
Harvard Medical School, Boston, MA, USA.
LEARNING OBJECTIVES: After studying this article, the participant should be able to: 1. Discuss the initial evaluation of a patient presenting with lower extremity enlargement. 2. Distinguish underlying medical conditions causing lower extremity enlargement, including lymphedema and lipedema. 3. Discuss appropriate management and treatment for patients presenting with these conditions.
BACKGROUND: Given the epidemic of obesity in the United States, many patients will consult the plastic surgeon with complaints of lower extremity enlargement secondary to “fat legs.” In addition to cosmetic disfigurement, some patients may suffer from underlying medical conditions that are responsible for their symptoms. Knowledge of these other causes, including lymphedema and a disorder of abnormal fat deposition known as lipedema, ensures appropriate management and/or surgical treatment for affected patients.
METHODS: Initial evaluation for lower extremity enlargement should include a discussion of pertinent medical history and a focused physical examination for findings that might indicate a pathologic underlying cause. When indicated, patients should undergo additional testing, including radiologic studies, to confirm their diagnoses.
RESULTS: For those patients found to have lymphatic dysfunction, conservative management, such as massage therapy, use of compression garments, and limb elevation, should be initially recommended. Excisional or suction-assisted lipectomy may be considered in patients who fail conservative therapy. More extensive consultation with the plastic surgeon is recommended for patients seeking aesthetic improvement in contour and shape of large legs without a specified underlying abnormality.
CONCLUSIONS: Patients with lower extremity enlargement may present to the plastic surgeon unsure of the specific cause of their deformity. A broad differential diagnosis exists for their presentation, which can be narrowed by using the common features and unique manifestations of the conditions.
Lippincott, Williams & Wilkins
Extracted of “LINFEDEMA of the extremities. TREATMENT MEDICO. Complex Descongestiva Therapy (Földi Method)”. October 1994. I.S.B.N. Nº 950-43-5937-X. Author: Rescuing Dr Grandson Translated from Spanish
The cellulite has gotten to be, at least in our means, a true social problem. More and more young women concur to the different doctor's offices afflicted by their aesthetic deterioration that always, for who has it, is of greater severity. The patients, imbuídas in predominant the present currents of exaltación of the corporal aesthetic values, demand to the professional the solution of their problem in the smaller possible time and, if he is feasible, treating that are not left tracks of that cellulite that obsesses them. Not very often they consider a disease that, like any other, must be studied previously to the practice of any therapeutic procedure. We must be sincere and to say that in a great number of cases they are “successful”, that is to say, are treated without more diagnosis than the resultant of the clinical impression. The great demand of the last years has generated a great supply of “services”. On this aspect we want to remarcar that so certain it is that the cellulite is not considered like a pathological organization that an important percentage of the affected population is not treated by doctors, which is constituted in an atypical fact in which to health it talks about.
From the clinical point of view, according to our experience, it does not offer too many difficulties to differentiate clearly linfedema from the cellulite in the inferior members. This presents/displays to the palpación an irregular surface that can “be taken hold” (the same in the first stages where the surface is smooth) whereas in linfedema the distension of the skin makes difficult that this can be made. Basically, the distension of the skin makes the difference and this one is at the most made a long time more well-known of evolution have: in the cellulite there is an increase in the circumference of the affected member but the surface is irregular, nodules of different size and hardness can be felt and the cutaneous distension can be demonstrated in each subarea determined by characteristic the geographic irregularities this affection. In linfedema skin is, in general, distendida uniformly (sometimes it seems that it is on the verge of exploding), the hardness of weaves is rather uniform although to the palpación zones of greater consistency can be determined than others without that alters the visual sensation of homogeneity. The cellulite does not affect the back of the foot but linfedema yes can do it. Of course, in linfedema secondary the antecedent is conclusive. The dynamic radioisotópica linfografía will be an element very useful for the diagnosis. On the other hand, linfedema can be malignizar and the cellulite no.
Lipedema, however, produces doubts of identity in relation to the cellulite. Földi says that “interesting analogies between the cellulite and lipedema exist” and it sends to us to Ryan and Curri for greater details. Frederic Vines says that the cellulite is “lipedema exclusively located in thigh and glútea zone of many women” and lipedema is “acúmulo of fat located fundamentally in the legs, from the ankles to the hips” (of “the lymph and its manual drainage”). Let us think that the concepts of Vines deserve to deepen themselves to make a suitable interpretation. Caesar Sanchez only speaks of cellulitis and says that he can be generalized or be located being able to take, in the case of the inferior members, a zone or all the extremity; he does not mention to lipedema (of “Cellulite. Its medical and cosmetológico treatment”). Jordi Latorre (“Symposium Zyma on linfedema, Buenos Aires, May of 1992”) says:“Lipedema: located in the inferior extremities, it is characterized by acúmulo abnormal of fat, mainly in glútea region, thighs and legs ”. It does not mention in his exhibition to the cellulite. Leibaschoff, and col., say: ”… These alterations in the capillaries of the fatty weave will increase the permeability of such, as well as a greater hair fragility with the consequent appearance of edemas interstitial interadipocitarios (lipedema)”. Soon it says that following Sergio Curri, they classify to the cellulite in diverse estadíos and in first estadío or estadío I it says: ”… Histológicamente, we found edema interstitial interadipocitario, formed by the exit of trasudado due to the alteration of the permeability of the capillaries ”(Leibaschoff and col.: “Lipoesclerosis (Cellulite)”, publication of the School Argentina de Aesthetic Medicina, Buenos Aires, 1988). As we see the difference between cellulite and lipedema presents/displays some difficulty, according to it is come off the exposed thing. Authors have coincidences between different in some aspects, like for example in which the name of cellulite is incorrect (more the names of subcutaneous paniculopatía edematosa or fibroesclerótica or fibroedema geloide or liposclerosis would be adapted), which the most affected they are the women (for some he is exclusive of feminine sex) and mainly in which the geographic place where the pathological facts of the cellulite, lipedema and also of linfedema are originated and triggered, is the circulatory microcosm . Let us think that we would approach enough the reality if we considered to the cellulite and lipedema as a same disease although we recognize that it would not be easy to us to associate them in those cases of obese patients, with great deformation of the thighs, mainly, expensa of formation grasocutáneas that even takes the knees altering their forms (they are artrósicas generally knees and the patients have little mobility by all it). Habitually they coexist with linfedema that pronounces clearly in legs and feet (lipolinfedema). We would say that the members in the conditions you decipher suffer lipedema and not a cellulite. Anyway, surely it will be a discussion subject during some time.
If we accepted that the problem is born in the disturbance of the microcirculation, we understand and thus we do it, that the treatment of lipedema, the cellulite and linfedema must be Complex the Descongestiva Therapy (Földi Method). The results obtained in the cases of lipedema/celulite have been beside the point satisfactory. The treated young patients respond to a large extent in excellent form and those that have more years of evolution sometimes they must resort a posteriori to other complementary procedures to improve definitively his aesthetic one (lipoescultura, lifting, etc.).
In all those presumably carrying patients of a lipedema/celulitis we solicitd of routine:
Hormonal Profile : T3, antitiroideos T4, Tsh-trh (basal and to the 25 '), Estradiol (day 13 of the cycle) and Progesterone (day 26) plasmáticas, Antibodies. Prolactina. Greasy profile : cholesterol, total lipids, lipidograma, triglicéridos. Glucemia We have found a very important number of patients with subclinical hipotiroidismo and that is the cause by which we requested the test of Tsh-trh. Obvious, the patients are derived (according to she corresponds) the different specialists.
By all the aforesaid one we think that our position is well clear:
The women (or men) carrying of lipedema/celulite have a disease that, in addition, affects its aesthetic one. Therefore they must be studied and treated by doctors since in our society, therefore they even say the laws to it, only the authorized one for it they are the professionals of the art to cure. The people with recognized technical capacity will be able to act only under supervision of a doctor. We give by sobrentendido that this is valid also for the linfedema.Preconizamos that to these patients study them meticulously and according to the results it treats them properly. We are not in agreement with certain present tendency for which to the patient who requires an immediate aesthetic solution, without repairing that she is ill, she is responsible herself to him, without further a do, with a procedure (surgical or similar) that does not consider the etiológico treatment of bottom. She must at least notice to it him on the matter.
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.
NORMAN SWAN: 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 this. 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 obesity. To the frustration of women with lipodema, medical science has few solutions. 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 them. 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.
by 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 Europe.
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 2004;101:A3491-3495 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 2004;8(1):22-26 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 2001:247-265
The misunderstood condition
by Pip Sharpe, Research Nurse, St George’s Hospital Medical School
What is 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. Lipoedema can 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.
What is lymphoedema? 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 antibiotics.
How does lipoedema differ from lymphoedema? To further 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.
Characteristic Lipoedema Lymphoedema Sex females only males & females Age of onset puberty usually pubertal Family history around 40% of cases around 20% of cases
(Harwood et al 1996) (Harwood et al 1996)
Obesity yes variable Symmetry usually symmetrical always symmetrical Swollen feet never usually Skin consistency normal or thinner thicker & firmer Pitting of skin usually absent always pits Easy bruising often no increase
Pain & discomfort often infrequent
Tenderness often infrequent Effect of dieting little effect on legs even 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.
How does 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. The reason for this at present is not known.
What causes the fluid retention to occur in lipoedema?
Whilst fluid 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.
Dieting and Exercise This condition is often misdiagnosed and treatment can be haphazard. 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 image. 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.
Diuretics Alternatively, diuretics are prescribed, in the belief that the swelling is caused by fluid retention, but very little, if any, benefit will be gained.
Hosiery 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.
Diagnostic Tests 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 functional.
Liposuction 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 improvement.
Current Research Treatment is 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 In 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.
If you would like further advice about this condition, a leaflet has been produced. Please contact:
Miss Pip Sharpe, Research Nurse Dept of Cardiological Sciences St George's Hospital Medical School Cranmer Terrace, London SW17 0RE
Or email firstname.lastname@example.org
Lipedema - Dr. Reid's Corner
I have received many questions about the relationship between excess weight and lymphedema and the response to last months survey was amazing. It is clear that many people are concerned about the relationship between weight and lymphedema. Another issue that comes up frequently. How to 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 lipedema.
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 surgical treatments.
Tony Reid MD Ph.D
As a person with both Primary lymph and lip this is very confusing as the symtoms overlap
I would like to question Dr Reid's actual idea that lipedema can be helped by diet when from actual experience dieting does not help unless you are aiming to lose body fats elsewhere
With lipoedema to lose weight from the infected limbs is near impossible especially when very few sufferers are even diagnosed till later on in life.
When the problems is so out of contol because of nonrecognition of lip.
Even misdiagnosised as many people with lipedema are told they have lymphedema.
If you have both lymph and lip diet is doubly confusing one condition alls for high protein diet the other low protien the experts advice us
Also lymphedema is helped enormously by compression garments success with reducing lymph can cause garment to cause breakage of the skin around the ankle as the overhang from lip causes garments to dig in around the crease of the ankle.
As you are all aware a break in the skin can cause infections where the MLD has to stop or you cannot wrap or wear garments because of very painful skin and wounds This causes the swelling from the lymph to return very quickly
Dor reid states diet can help i am afraid if they do its the upper part of the body
Also lip can be in the upper part of the body too.
There is very little help available and almost no research with lip is going on.
I can only describe the problems having both primary LE and Lip from over 40 years of trying to deal with it and only six years of doctors recognising that i had the condition in the first place.
I have had over 40 years of accumilation of fluid from lymph and fat cells not being broken down into my body by lip. Forty years of my very obvious condition not being recognised and spending nearly 30 years on diets by nutritionist hospitals etc without success
I think the diet has to be specifically for the needs of lipos normal dieting does not help.
The condition causes pain huge limbs so excercise becomes more and more difficult. Depression gathers momentum in many that do not have any condition but obesity according to the doctors they have saught help from.
You become larger and larger till your self esteem is buried under the condition called lipedema and one of the worse pressures on sufferers of lipedema is the assumption by medical proffesionals and society is you are just another overeater that won't help and you are thought of as lazy woman who lies about an eating problem.
Normal dieting does not help lipdema
I am sorry but this is my opinion from over 40 years of dealing with lipedema without any help or recognition of the condition by doctors.
Lipedema (lipoedema, lipodema) is rarely diagnosed until not only irreparable damage to your body is done but terrible damage to your self-belief, self esteem, self worth.
The lack of help, diagnosis and the disbelief a lip sufferer has to face are unbelievable and cruel.
It not only damages your body but it eats away at your whole life and causes damage to many women’s self-belief and sense of self worth. These feelings are never fully reversed.
So great is the damage that not only do they have to live with lip but also many live with deep depression and in some cases the belief because of wrong diagnosis that this is a self inflicted condition caused by overeating and lack of exercise . This belief comes from years of going to Doctors asking for help and being told to diet your overweight. It's a problem of your own making.
As many lip sufferers will tell you normal dieting DOES NOT WORK but we try for years and years and when we go to seek help and say ”But I do diet I don't over eat.” They see in the face of the nutritionist or doctor they do not for one minute believe you.
Many of us have children daughters when we finally find out that that we have this condition, we also find out that it is more than likely it will be passed on because this is a genetic condition.
Little or no funding for research is available.
Will our daughters suffer the same because all doctors see is obese?
There is such a campaign against obesity in the western world yet so many people are obese because of this condition and cannot even get diagnosed.
IF this condition could be diagnosed early then maybe we could help ourselves with self-care, correct eating for lipedema, massage exercise support hose wrapping. They would not cure the condition but like lymphedema it would help many of us to slow the progression of this condition down.
It would also give us at least less chance of the chronic weight problem becoming out of control if we were diagnosed early and we could then treat the condition correctly.
It is a vicious circle until diagnosed we do not know that what we think is helping our problem can actually make it worse the diet we choose.
Early recognition of Lipedema is desperately needed.
I now know mine started at puberty. The signs were there, only no doctor saw them. They only saw an obese child.
The huge weight increase at puberty was a matter of a few weeks not years of over eating it came out of the blue.
Listening to the parents —- my mother told doctor after doctor I ate like a tiny bird not one doctor listened or thought to ask if I was not eating why this weight increase.
They called it 'Puppy Fat' many girls put weight on at puberty.
When I did lose weight around 14 -15 years old again the signs were there. These signs were small upper body tiny waist huge hips and legs and still I was told to diet
My legs were that shape and there nothing they could do.
I believe these were all pointers to the possible condition of lipedema.
Later with each child the legs became bigger weight loss became near impossible weight gain each time seeing professional dietians at hospitals no weight loss and still disbelief.
These signs need to be investigated not just ignored.
Doctors need to be made aware of this condition.
The children that might develop lipedema need a chance to live without the neglect of this chronic condition but also the knowledge that they have not self inflicted the huge size of their lower body
In this world of Hollywood looks and model figures of the battery of condemnation of obesity.
To inflict the self-doubt and misery onto a child that has a chronic condition to deal with, when doctors do not diagnose it is the worse kind of cruelty.
To believe this is your fault, that you did it to yourself is total misery, because for all your dieting exercise you just keep getting bigger.
At least give these children the knowledge that they have a condition that causes this and it is not their fault. Maybe it will be a long time coming a cure or help for lipedema must be found.
But we can stop the deep depression and stop taking their self-esteem by giving them a diagnosis so they can understand this is NOT THEIR FAULT.
WE NEED EDUCATION OF DOCTORS who fail these children/ women and help by indifference, make life for undiagnosed lipedema sufferers, a total misery
Dorothy Mooney UK. born 1950 lipedema since puberty diagnosed 2004
by Pat Washburn
Are you a woman with “big legs”? If your lower legs are “fat” and swollen, do not respond to weight-loss efforts, and become more painful over the course of a day, you might have lipedema.
Lipedema is a hereditary disorder that occurs almost exclusively in women. It is not fully understood, but appears to set in at puberty and grow worse with pregnancy and perimenopause. The lipedema patient suffers from fatty deposits in her lower body which do not respond to diet and exercise. Indeed, it is possible to be anorexic and still have “fat legs” due to lipedema.
Many lipedema patients ARE fat. I am one of them. The discomfort in my legs makes it difficult to exercise, and I was undiagnosed for 30 years - years during which I blamed myself for my weight problems, fueling a cycle of self-hatred and binge eating.
Though lipedema was discovered in 1940, many doctors do not know about it, and it is widely undiagnosed. It is also sometimes confused with lymphedema, a form of swelling that is common after surgery (particularly for breast cancer). The big difference between lymphedema and lipedema is that lymphedema usually occurs only on one side of the body.
There is no cure for lipedema, and no truly effective treatment. The treatments that are available focus on cutting the swelling and preventing the cellulitis and other skin infections that can occur as lymphatic fluid, unable to circulate freely, pools in the lower legs. Treatments include:
- wearing custom compression stockings
- Manual Lymphatic Drainage, a type of specialized massage performed by a trained physical therapist
- elevating the legs
- swimming for exercise
MLD treatments and compression stockings are covered by some, but not all, health plans. Many lipedema patients find they must be their own advocates to get treatment and help. There are several lipedema resources online, and you may even be able to find or start a lipedema support group in your area.
Link No Longer valid for article
Please see the author's excellent blog on lipedema:
Big Leg Woman
A Lipedema Journal
You Magazine / Health Notes Dec 24, 2006
Health Editor Sarah Stacey asks the experts for answers to your health queries.
Q – My wife suffers from lipoedema, with very swollen lower legs, which measure 60cm around the calf and 55cm above the ankle. Do you know of any therapies that can help?
Lipedema – from “lipid” meaning fat, and “oedema” swelling – is a condition where excess fat collects below the waist (and sometimes on upper arms) but not at the foot. The classical shape of lipoedema sufferers, according to consultant dermatologist Professor Peter Mortimer of St. George’s Hospital, London is a relatively small, even slender top hal with a disproportionately large pear-shaped lower half and thick, heavy legs tapering to normal feet. The fatty areas, which are symmetrical on both legs, are tender and often painful.
Although a handful of men are affected, lipoedema almost exclusively affects women, usually after puberty, pregnancy or some other event involving the reproductive hormones, such as taking the contraceptive pill or HRT (Men with lipoedema invariable have liver disease, which affect the way they metabolize estrogen.)
As well as the psychological distress of the disfigurement, sufferers report that the widespread ignorance of the medical profession is profoundly depressing.
“Many patients don’t feel listened to or understood,” says Professor Mortimer. In recent surveys, about half the doctors who responded confessed that they didn’t know what lipoedema was. Very often, patients are told to diet and exercise but, says Professor Mortimer, “overeating is not the cause and many women with lipoedema find it’s more acceptable to be fat rather than thin because their disproportionate shape is not so obvious.”
If the swelling becomes severe, the condition can cause damage to the body’s lymphatic system resulting in lympoedema, too (known as lipoedema/lymphoedema syndrome). Until this point the conditions are quite separate.
Lymphedema is an accumulation of fluid and proteins, which cause swelling in many different parts of the body from head to feet. For more information, see the ‘differential diagnosis’ on anarmandaleg.co.uk
Sadly, there is little convential help for lipoedema. “The bottom line is that the standard treatment for lymphoedema – mainly manual lymphatic drainage massage and compression bandages or stockings – has little impact on the lipoedema,” says Professor Mortimer. “There are concerns about recommending conventionnal liposuction because there is no evidence that it works, and it may damage the vulnerable lymph routes, causing lymphoedema.”
However, there is hope that ultrasonic lippsuction may provide an effective and safer alternative. David Ross, head of plastic surgery at Guy’s and St. Thomas’ Hospital, London, has carrier out this procedure on a handful of patients with severe lipoedema with ‘pretty spectacular results’, he says.
Ulstrasonic liposuction works by transmitting shock waves through a special hand piece to the end of a cannula (fine tube), which is inserted into the area to be treated.
The waves break up the fat, turning it into a milky emulsion, which is then sucked up by the cannula.
Used incorrectly, the procedure may cause burns to the skin and underlying tissues, but Mr. Ross has been using it for many years without problems. “Our experience has shown that the diameter of thighs and calves can be significantly reduced, greatly improving the patient’s shape and really enhancing their self-confidence.” He warns that patients may be left with excess skin on the inner thighs, which needs a separate skin-tightening operation. Because the ultrasound technology is costly, few NHS hospitals have it, so the procedure is currently only available privately although Mr. Ross hopes this will change.
Dr. Steve Gascoigne, a GP who also practices traditional Chinese medicine, uses herbs and acupuncture to treat lipoedema. “It’s a long-term therapy, not a miracle cure, but patients should see a reduction in swelling and discomfort, plus more energy, with six to eight weeks.” He says. (To find a local practioner contact the British Acupuncture Council, tel: 020 8735 0400, aucupunture.org.uk
The Lymphoedema Support Network also provides some information on lipoedema – visit lymphoedema.org. However, there appears tobe no lipoedema patient support group in this country. If readers know of one, please let me know and I will publish it. Visit biglegwoman.blog for a journal by Jane, an American sufferer.
Lipedema combines obesity with painful swelling
Grania Litwin, Times Colonist
Published: Friday, July 28, 2006
Being seriously overweight can be depressing, emotionally upsetting and socially stressful.
It can hurt, too, when a person suffers from a condition called lipedema, also known as painful fat syndrome.
“Lipedema is not related to overeating,” stresses Robert Harris, director of this city's Dr. Vodder School, and an expert in fluid retention and acute swelling.
“People can starve themselves, have surgery, take slimming pills and nothing helps,” he says of the chronic condition that occurs in females almost exclusively. It is characterized by symmetrical fatty-tissue buildup and swelling, from hips to lower legs.
The syndrome was first identified in 1940 and since then has mostly been studied and written about in Europe, says Harris, whose school is teaching ways to reduce this edema (swelling) through massage and application of strong elastic bandages or garments – a therapy that began in Germany.
“It is seriously underdiagnosed in North America, but starting to be recognized.”
The cause is unclear, and there is no cure for the condition that experts say affects at least one in 2,000. Researchers believe it might be genetically linked, however, with a connection to hormones, microcirculation and inflammation. Harris adds it is different from lymphedema, the swelling complication that can result from cancer surgery, radiation and damage to lymph nodes.
“I have a very deep, achy feeling in my legs,” says a 28-year-old Victoria woman who asks not to be identified, but has suffered from severely swollen lower limbs since age 12. “My mother had it, too. I can't stand too long, and it's very sore if someone bumps me or touches my legs.”
For years she tried all kinds of slimming programs but to no avail. Then a year ago she was diagnosed with lipedema and discovered the massage therapy that is helping reduce both pain and swelling.
Three world authorities in lipedema management and treatment are in Victoria this week, offering workshops through the Dr. Vodder School to about 50 massage therapists, physiotherapists and health professionals from around North America. On Sunday morning, anyone with the condition can attend a free session at St. Margaret's School auditorium, 1080 Lucas Ave. (For health professionals the cost is $25.)
It starts at 8:30 a.m. with research updates by Dr. Horst Weissleder, professor of radiology at the University of Freiburg, Germany. He has published more than 200 articles about radiology, nuclear medicine and lymphology in international medical journals, and co-authored Lymphedema Diagnosis and Therapy.
After his talk, Angela Vollmer, an expert in fitting compression garments, will discuss lipedema and compression garments.
“This is a very painful condition, and people can diet, diet, diet and it doesn't help,” she explains. “Why? Because it is an illness, and not caused by excess calorie consumption. These people need lymph drainage treatment (massage) to remove excess liquid, and compression hose – either Bermuda or Capri length stockings – to keep the swelling down. With this treatment they don't see a great reduction in volume, but there is a great decrease in pain and improved quality of life.”
The buildup of lymphatic liquid is what creates the pressure and pain, and garments, made of flat-knit material, should be used for compression.
“These new garments do not constrict circulation and distribute even pressure to a large surface.
The wide weave allows air to flow, which makes daily wear more bearable for the patient and there is micromassage through movement, which supports the decongestive therapy,” she says.
In recent years, she says, German experts have also developed new liposuction techniques to help dissolve fatty tissue, “and very fine needles to take out the liquid quite easily.”
A panel discussion Sunday morning will include professor Hildegarde Wittlinger of the Dr. Vodder Clinic in Austria, and Harris. For more information call 598-9862.
Times Colonist (Victoria)
Link at Canada.com no longer valid
Recently, one of our members from the UK, Helen made a couple marvelous posts on MLD/CDT for lipedema.
Helen is a certified lymphedema therapist as well as a lipo-lymphedema patient. I can't say enough good about how much she adds to our family and about the quality of her posts, compassion for others and tireless committment to help.
I thought it might be helpful to share a couple of her posts on lipedema treatment.
* * * * * *
MLD/CDT treatments - number and frequency
A course tends to be a minimum of 10 treatments on consecutive days… having said that…
It depends on the client and the client's legs!
For instance - don't be surprised about the following (from a Vodder-trained therapist):
21 consecutive daily MLD / CDT treatments (incl daily bandaging and the measuring and fitting for compression tights) lasting approx 2 hours each - this would be for someone with very poor lipoedema with lymphoedema as well.
Sometimes it's even twice-daily over 21 days…… re-mortgage the house time, if going private!
10 consecutive daily MLD / CDT treatments (incl daily bandaging and the measuring and fitting for compression class 2 tights) lasting 1 1/2 - 2 hours each - this might be for someone with lip who also has problems with normal oedema (which probably comes on in the latter half of the day).
7 consecutive daily MLD / CDT treatments lasting 1 1/2 each - this might be for someone with moderate lip who has experienced pain. Followed immediately by 1 treatment every 3-4 days for 3 sessions in total (or more if the client requests it). I always do kinesiotape in between those last 3 sessions…
The reason for the 7 treatments is that lymph has incredible inertia and doesn't get moving until you're well into the course of treatments. At that point, with 'simple' lip I can get away with doing those 7 treatments and then spacing the remaining 3 out. In that way, the client benefits from having their lymph moving by the 7th treatment and then, as it has already got its own momentum going, the treatments can be spaced a little as the lymph is still moving in between.
Another thing someone could do would be to have treatment every 3 or 4 days (that's just MLD - not CDT) but to have it from a therapist who is also trained in kinesio-taping. That way you could have 1 treatment, be taped up (from axilla - the armpits - to a fanshape over the thighs) and that would last for 4 days until your next treatment. That would be something I would try with someone who is short of time/money/patience or support from loved ones. that kind of thing.
It works well on a lot of patients. you must have a patch-test done though to check you are not sensitive to the acrylic glue which is on the tape.
Hope that helps.
Let me know how you get on or if you have any problems… Helen x
As with all treatments that have a de-toxifying effect on the body… with a therapist's advice (and if appropriate) it's good to start the process by drinking lots of water and, if poss, having juices (not 'smoothies', but 'extracted' fruit and/or vegetable juice). You stand a better chance of not having murky headaches during the treatments then (as everything starts getting stirred up with MLD - though headaches are uncommon) and the extra goodness can only benefit you at a time of great change for your body. see http://www.happyjuicer.com/ for more info - haven't see the site before but it looks interesting.
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
Come join, be a part of the family!
Comprehensive blog site for brining together all information on lipedema to go with our Yahoo group Lipedema, Lipoedema, Lipodema.
Lipodema - An Overview
Lipoedema a distinct clinical presentation
Case report of swollen legs– An uncommon cause for a common problem Swollen legs
Excellent site with solid information
Lipedema - Karen L, Herbst, Ph.D.,M.D.
Leading researcher with site also containing information on Dercum's Disease and Familial Multiple Lipomaatosis
Lipedema is a poorly understood Disease in the United States