Effect of a low-carbohydrate diet on pain and quality of life in female patients with lipedema: a randomized controlled trial.

OBJECTIVE: The primary objective of this study was to evaluate the effect of a low-carbohydrate diet (LCD) compared with a control diet on pain in female patients with lipedema. The secondary objectives were to compare the impact of the two diets on quality of life (QoL) and investigate potential associations of changes in pain with changes in body weight, body composition, and ketosis. METHODS: Adult female patients with lipedema and obesity were randomized to either the LCD or control diet (energy prescription: 1200 kcal/day) for 8 weeks. Body weight and body composition, pain (Brief Pain Inventory measured pain), and QoL (RAND 36-Item Health Survey [RAND-36], Impact of Weight on Quality of Life [IWQOL]-Lite, and Lymphoedema Quality of Life [LYMQOL]) were measured at baseline and at postintervention. RESULTS: A total of 70 female patients (age, mean [SD], 47 [11] years; BMI 37 [5] kg/m2) were included. The LCD group had greater weight loss (-2.8 kg; 95% CI: -4.1 to -1.0; p < 0.001) and larger reduction in pain now (-1.1; 95% CI: -1.9 to -0.3; p = 0.009) compared with the control group. No association was found between changes in pain now and weight loss. Both groups experienced improvements in several QoL dimensions. CONCLUSIONS: Diet-induced weight loss in women with lipedema can improve QoL. An energy-restricted LCD seems to be superior to a standard control diet in reducing pain.

National Lymphoedema Conference 2024: session summaries.

The 11th annual National Lymphoedema Conference, organised by the British Journal of Community Nursing in association with the British Lymphology Society and Lipoedema UK, was hosted at the America Square Conference Centre, London, on 22 February 2024. The conference, which aims to provide new insights into the latests developments in lymphoedema care and management through talks by leading experts in the field, was attended by an impressive number of delegates and exhibitors. The sessions were Chaired by BLS Trustee Rebecca Elwell, and are summarised below.

Proposed Framework for Research Case Definitions of Lipedema.

Background: Our aim is to propose a framework for the development of a research case definition of lipedema, based on current available literature and those observations that can be applied to future lipedema research with the intent to standardize and strengthen the scientific evidence base. Methods and Results: We conducted a narrative review of the literature, and identified consensus characteristics and disputed characteristics that could be included in a research case definition of lipedema. After considering the strength of the evidence and how each characteristic might be measured in a research study, we recommended an approach for the development of a research case definition of lipedema that would be based on consideration of five agreed-upon characteristics, and five disputed, or less substantiated, characteristics as additional evidence to enhance specificity. Conclusions: We present a case definition framework for lipedema drawn from the scientific literature that can be applied to future studies on lipedema. Utilizing this framework should help to increase the sensitivity and specificity of case definition and provide an opportunity for meta-analysis of clinical studies and facilitate future research intercomparisons.

Screening for Peripheral Vascular Stiffness in Lipedema Patients by Automatic Electrocardiogram-Based Oscillometric Detection.

Body mass index (BMI) is seen as a predictor of cardiovascular disease (CVD) in lipedema patients. A valid predictor of CVD is increased aortic stiffness (IAS), and previous research described IAS in lipedema. However, it is not known if this applies to all patients. In this cross-sectional single-center cohort study, peripheral pulse wave velocity (PWV) as a non-invasive indicator of aortic stiffness was measured in 41 patients with lipedema, irrespective of stage and without pre-existing cardiovascular conditions or a history of smoking and a maximum body mass index (BMI) of 35 kg/m2. Automatically electrocardiogram-triggered oscillometric sensor technology by the Gesenius-Keller method was used. Regardless of the stage of lipedema disease, there was no significant difference in PWV compared to published standard values adjusted to age and blood pressure. BMI alone is not a predictor of cardiovascular risk in lipedema patients. Measuring other anthropometric factors, such as the waist-hip ratio or waist-height ratio, should be included, and the existing cardiovascular risk factors, comorbidities, and adipose tissue distribution for accurate risk stratification should be taken into account. Automated sensor technology recording the PWV represents a valid and reliable method for health monitoring and early detection of cardiovascular risks.

A Family-Based Study of Inherited Genetic Risk in Lipedema.

Background: Lipedema is a progressive condition involving excessive deposition of subcutaneous adipose tissue, predominantly in the lower limbs, which severely compromises quality of life. Despite the impact of lipedema, its molecular and genetic bases are poorly understood, making diagnosis and treatment difficult. Historical evaluation of individuals with lipedema indicates a positive family history in 60%-80% of cases; however, genetic investigation of larger family cohorts is required. Here, we report the largest family-based sequencing study to date, aimed at identifying genetic changes that contribute to lipedema. Methods and Results: DNA samples from 31 individuals from 9 lipedema families were analyzed to reveal genetic variants predicted to alter protein function, yielding candidate variants in 469 genes. We did not identify any individual genes that contained likely disease-causing variants across all participating families. However, gene ontology analysis highlighted vasopressin receptor activity, microfibril binding, and patched binding as statistically significantly overrepresented categories for the set of candidate variants. Conclusions: Our study suggests that lipedema is not caused by a single exomic genetic factor, providing support for the hypothesis of genetic heterogeneity in the etiology of lipedema. As the largest study of its kind in the lipedema field, the results advance our understanding of the disease and provide a roadmap for future research aimed at improving the lives of those affected by lipedema.

LymphActiv: A Digital Physical Activity Behavior Intervention for the Treatment of Lymphedema and Lipedema.

Background: Lymphedema and lipedema are debilitating conditions with no proven drug or surgical therapy. Effective treatment requires self-management through movement and compression to reduce limb volume and the incidence of cellulitis. The addition of personalized everyday physical activity (PA) could be transformative, increasing the therapy window to include all waking hours per week and enabling an increased dose of PA. Aim: This service evaluation aimed to determine the feasibility of LymphActiv as a treatment option for lymphedema and lipedema patients. Methods: This service evaluation followed an open observational cohort design, including 55 patients who participated in LymphActiv over 24 weeks. Patients wore an objective PA monitor and interacted with their data in an online dashboard, alongside remote mentor support. Primary outcomes were changes to PA, body weight, limb volume and quality of life. Clinical assessments occurred at baseline and after the 24-week program. Noncompleters were used as a quasi-control group for comparison. Results: Thirty-seven patients completed, of which 81% improved PA. On average, completers reduced their right and left lower limb volumes by -1.8% and -2.1%, respectively. Completers also experienced small average weight losses of -1.2 kg. Noncompleters experienced small average increases in each of these outcome measures. Discussion: These results establish the value of LymphActiv, providing benefit to patients who might otherwise have deteriorated. For services, this could lead to substantial cost-savings through reduced admissions, greater patient independence, and less need for community health care input. The next step is to undertake a randomized, controlled trial comparing the intervention with standard care.

Quality of life following liposuction for lipoedema: a prospective outcome study.

BACKGROUND: The study examines, for the first time, the impact on quality of life after liposuction for lipoedema. The influence of aesthetic plastic interventions and their effects on treatment outcomes has been a major focus of our research group over the past 20 years. METHODS: A total of 35 patients were invited to participate in our prospective study, with 30 responding to both the pre- and postoperative questionnaires. The patients received the questionnaires pre-operatively, and 6 months after the liposuction. Our questionnaire set included a self-developed, indication-specific part, along with standardised and validated questionnaires such as the Questions on Life Satisfaction (FLZM), Patient Health Questionnaire (PHQ-4), Rosenberg Self-Esteem Scale (RSES) and the Freiburg personality inventory-revised (FPI-R). RESULTS: Our self-developed questionnaire showed that our patients feel more balanced, more attractive and more self-confident after the treatment. The FLZM showed significant improvements in all three modules: the general satisfaction with life, the state of health and the outer appearance (body image). Using the PHQ-4, a significant improvement in the two subscales of anxiety and depression could be determined, as well as a reduction in overall mental stress. In addition, the RSES showed a significant improvement in self-esteem post-operatively. Furthermore, the FPI-R indicated a significant improvement in emotional stability. CONCLUSIONS: Liposuction improves the quality of life in lipoedema patients. Post-operatively, our patients reported less pain and were more satisfied with their bodies and appearance. The hypothesis that liposuction in lipoedema improves the quality of life as a multidimensional construct could be confirmed.

Venous thromboembolic outcomes in patients with lymphedema and lipedema: An analysis from the National Inpatient Sample.

BACKGROUND: Patients with lymphedema and lipedema share physical exam findings that may lead to misdiagnosis. Poor mobility is common in patients with obesity and patients with lymphedema and lipedema. This may constitute a risk factor for venous thromboembolism (VTE). Our objective was to evaluate the association of VTE in obese patients with lymphedema and lipedema. METHODS: The National Inpatient Sample (NIS) was searched from 2016 to 2020 to identify hospital admissions of obese female patients with lymphedema and lipedema. Patients were analyzed in the context of presence or absence of VTE while adjusting for complex cluster sampling techniques. Predictors of VTE were accessed by multivariable regression. RESULTS: Lymphedema was identified in 189,985 patients and lipedema in 50,645 patients. VTE was observed in 3.12% (n = 374,210) of patients with obesity. In patients with obesity, VTE was more common in patients with lymphedema than without (2.6% vs 1.6%; p < 0.01). Similarly, VTE was more common in patients with lipedema than without (0.6% vs 0.4%; p < 0.01). After multivariable logistic regression, VTE events in obese patients with lymphedema were higher versus without (OR 1.6; CI 1.08-2.43; p = 0.02). Similarly, VTE events were more common in obese patients with lipedema versus obese patients without lipedema (OR 1.20; CI 1.03-1.41; p = 0.02). CONCLUSIONS: In this hypothesis-generating study, lymphedema and lipedema show a positive association with VTE after adjusting for baseline patient characteristics such as obesity, which is a known independent risk factor for VTE. Mechanisms whereby lymphedema and lipedema are associated with VTE should be investigated.

Observational Study on a Large Italian Population with Lipedema: Biochemical and Hormonal Profile, Anatomical and Clinical Evaluation, Self-Reported History.

We analyzed the medical condition of 360 women affected by lipedema of the lower limbs in stages 1, 2, and 3. The data were assessed for the whole population and compared between different clinical stages, distinguishing between obese and non-obese patients. The most frequent clinical signs were pain when pinching the skin, subcutaneous nodules, and patellar fat pads. The most frequently painful site of the lower limbs was the medial lower third of the thigh. The pain score obtained on lower limb points increased progressively with the clinical stage. In all points evaluated, the thickness of the subcutaneous tissue increased with the clinical stage. Analyzing the data on the lower medial third of the leg and considering only patients with type 3 lipedema, the difference between stages was statistically significant after correction for age and BMI. We found higher levels of C-reactive protein at more severe clinical stages, and the difference was significant after correction for age and BMI between the stages. Overall, the prevalence of alterations of glucose metabolism was 34%, with a progressive increase in prevalence with the clinical stage. The most frequent comorbidities were vitamin D insufficiency, chronic venous disease, allergies, dyslipidemia, headache, and depression of mood. Interestingly, in comparison with the general population, we found higher prevalence of chronic autoimmune thyroiditis and polycystic ovary syndrome. Finally, the clinical stage and the involvement of the upper limbs or obesity suggest a worse clinical, anthropometric, and endocrine-metabolic profile.

The value of sonographic microvascular imaging in the diagnosis of lipedema.

BACKGROUND: Lipedema is a chronic disease marked by symmetric enlargement of painful nodular and fibrotic adipose tissue, predominantly affecting the limbs. Since there is no specific test or biomarker for this condition, years often pass before the diagnosis of lipedema is established for the first time, thereby causing psychosocial distress, including depression, eating disorders, and social isolation. Over the last few years several advanced Doppler-based technologies have been developed to visualize slow flow blood vessels and superficial microvascular architecture undetectable by traditional color Doppler flow imaging (CDFI). OBJECTIVE: The aim of this study was to evaluate the superficial microvascular anatomy in lipedema patients compared to healthy controls and investigate the clinical significance of the Ultra Micro Angiography (UMA) technology in the diagnosis of lipedema. This new technique may contribute to reduce the diagnostic delay and, eventually, establish and guide treatment strategies toward a better therapeutic outcome in lipedema patients. METHODS: 25 patients with lipedema and ten healthy controls with no history of lipedema were included in this study. All ultrasound examinations were performed on a novel high-performance ultrasound system (Resona R9/Mindray) using CDFI and the UMA technique. RESULTS: In all of the patients, Ultra Micro Angiography achieved the excellent visualization of microvascular structures, revealing that most lipedema patients showed grade 3 (n = 13) or grade 2 (n = 8) flow. UMA was superior to CDFI for depicting the microvascular structures. CONCLUSIONS: Here we show that UMA imaging characterizes the subcutaneous microvasculature with an unprecedented accuracy. The method has the advantage of being sensitive to small, slow-flowing vessels. This allows for the assessment of the course of vessels and vascular pathologies in great detail. Thus, UMA as a non-invasive diagnostic method can improve diagnostic accuracy in lipedema.

Assessment of lower extremity venous insufficiency and lipedema and their association with knee symptoms, functions, and quality of life in patients with knee osteoarthritis.

OBJECTIVE: To evaluate the effects of the venous insufficiency (VI) or lipedema on the symptoms, functions, and quality of life (QoL) of patients with knee osteoarthritis (OA). METHODS: 96 patients with stage 3/4 knee OA were included in the study. Patients were grouped as OA (n = 35), VI + OA (n = 35), and lipedema + OA (n = 26). Range of motion (ROM), Visual Analogue Scale (VAS), Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), short-form (SF-36), and 6-minute walking test (6MWT) were evaluated. RESULTS: WOMAC stiffness score was significantly higher in the VI group than the other groups (p < .05). VAS resting, WOMAC pain, function, and total scores were significantly higher in the lipedema + OA and VI + OA groups than the OA group (p < .05). SF-36-physical role limitation was significantly lower in the lipedema and VI groups (p < .05). CONCLUSION: VI or lipedema accompanying knee OA increases the existing disability due to OA by negatively affecting patients regarding pain, QoL, and physical functioning.

Effect of Physical Therapy on Circumference Measurement and Extremity Volume in Patients Suffering from Lipedema with Secondary Lymphedema.

Background: Lipedema is a chronic and progressive disease. Many complications can occur if the disease is not treated. The most important of these complications is lipedema with secondary lymphedema. There are very few publications about lipedema with secondary lymphedema. The aim of this study is to investigate the effect of physical therapy on lower extremity circumference and volume in patients suffering from lipedema with secondary lymphedema. Methods and Results: All patients received pneumatic compression and complex decongestive therapy (CDT). Perometer measurement was made at five distinct points. Fifteen patients were included in the study. It was seen that significant reduction was found in the circumference of three of the five points of measurements performed in the left leg, whereas significant reduction was found in the circumference of four of the five points of measurements performed in the right leg. Also, there was a decrease in the extremity volume in both legs. Conclusion: Combined application of CDT and pneumatic compression in patients suffering from lipedema with secondary lymphedema is an effective treatment method in reducing lower extremity volume and circumference measurement.

National survey of patient symptoms and therapies among 707 women with a lipedema phenotype in the United States.

BACKGROUND: National survey data exploring the patient experience with lipedema are lacking. METHODS: We conducted national surveys from 2016 to 2022 of women with lipedema as well as female controls. Surveys collected information on symptomatology, pain, and therapies. We performed logistic regression comparing symptoms among those with lipedema versus controls adjusting for age and BMI. RESULTS: A total of 707 women with lipedema and 216 controls completed the surveys. Those with lipedema had a mean age of 48.6 years and mean BMI of 40.9 kg/m2. Lipedema symptom onset occurred frequently at puberty (48.0%) or pregnancy (41.2%). Compared to controls, women with lipedema were more likely to report leg swelling in heat (odds ratio [OR], 66.82; 95% CI, 33.04-135.12; p < 0.0001), easy bruising (OR, 26.23; 95% CI, 15.58-44.17; p < 0.0001), altered gait (OR, 15.54; 95% CI, 7.58-31.96; p < 0.0001), flu-like symptoms (OR, 12.99; 95% CI, 4.27-39.49; p < 0.0001), joint hypermobility (OR, 12.88; 95% CI, 6.68-24.81; p < 0.0001), cool skin (OR, 12.21; 95% CI, 5.20-28.69; p < 0.0001), varicose veins (OR, 11.29; 95% CI, 6.71-18.99; p < 0.0001), and fatigue (OR, 9.59; 95% CI, 6.10-15.09; p < 0.0001). Additionally, 70.3% had upper arm involvement, 21.2% reported foot swelling, and 16.6% reported foot pain. Most (52.2%) reported no symptom improvement with diet or exercise. Common therapies used included compression therapy (45.0%), gastric bypass (15.7%), and lower-extremity liposuction (14.0%). CONCLUSION: In a large, national, symptom survey, women with lipedema reported excess pain, swelling, and fat in the legs along with numerous symptoms beyond those classically described. Symptom responses to common therapies remain understudied.

Diagnostic imaging in lipedema: A systematic review.

BACKGROUND: Diagnosing lipedema remains a challenge due to its heterogeneous presentation, co-existing diseases, and the lack of objective diagnostic imaging. OBJECTIVE: This systematic review aims to outline the currently available diagnostic imaging methods to characterize lipedema in the legs along with their diagnostic performance. METHODS: PubMed, Embase, Google Scholar, Scopus, and Web of Science were searched. The quality assessment of diagnostic accuracy studies (QUADAS) tool was used for quality assessment. RESULTS: Thirty-two studies describing a total of 1154 patients with lipedema were included for final analysis. Features for lipedema have been defined using ultrasound (increased subcutaneous adipose tissue), lymphoscintigraphy (slowing of the lymphatic flow and a frequent asymmetry between the lower extremities), computed tomography (symmetrical bilateral soft tissue enlargement without either skin thickening or subcutaneous edema), magnetic resonance imaging (increased subcutaneous adipose tissue), MR lymphangiography (enlarged lymphatic vessels up to a diameter of 2 mm), and dual-energy X-ray absorptiometry (fat mass in the legs adjusted for body mass index (BMI) ≥ 0.46 or fat mass in the legs adjusted for total fat mass ≥ 0.384). CONCLUSION: The diagnostic performance of currently available imaging modalities for assessing lipedema is limited. Prospective studies are needed to evaluate and compare the diagnostic performance of each imaging modality. Imaging techniques focusing on the pathogenesis of the disease are needed.

Prevalence of Fibromyalgia Syndrome in Women with Lipedema and Its Effect on Anxiety, Depression, and Quality of Life.

Background/Aim: The aim of this study was to determine the frequency of fibromyalgia syndrome (FMS) in patients with lipedema and to evaluate the effects of FMS on anxiety, depression, and quality of life (QoL) in this patient group. Methods: Patients with lipedema were invited to participate in a Survey-Monkey questionnaire (according to inclusion and exclusion criteria) that was announced on the facebook page of the lipedema patient community. The demographic and clinical properties, including age, body mass index (BMI), education, marital status, and types and stage of lipedema, were collected. Presence of fibromyalgia was assessed by the questions based on American College of Rheumatology 2016 FMS diagnostic criteria. The Hospital Anxiety and Depression Scale and Short Form-12 (SF-12) were used to assess the anxiety and depression, and QoL respectively. The demographic and clinical characteristics, as well as anxiety/depression level and QoL of lipedema patients were evaluated in regard to the presence (Group 1) and absence (Group 2) of FMS. Results: A total of 354 participants with a mean age of 43.18 ± 9.53 years and BMI of 30.61 ± 6.86 were included. The majority of them were married and had university education. Most of the patients had types 1, 2 and commonly stages 1 and 2 lipedema. One hundred twenty-four patients (35%) satisfied FMS criteria. The demographic characteristics except pain intensity were similar between the groups. The mean anxiety and depression scores of Group 1 were significantly higher compared with Group 2 (13.11 ± 4.2 vs. 9.87 ± 4.65, 10.23 ± 3.79 vs. 8.26 ± 4.15, respectively, p < 0.001). The mental and physical subgroup scores of SF-12 (35.37 ± 8.59 vs. 42.55 ± 10.15, 35.27 ± 8.49 vs. 40.38 ± 11.36, respectively) were significantly lower in Group 1 than in Group 2 (p < 0.001). Conclusion: More than every 3 lipedema patient may have FMS. This comorbidity may increase depression and anxiety, and impair QoL. Therefore, FMS must be kept in mind especially in the assessment of painful lipedema patients to decrease anxiety/depression and enhance the QoL of them.

An uncertain uphill battle - experiences and consequences of living with lipedema.

PURPOSE: To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach. RESULTS: The overarching theme, "An uncertain uphill battle against a divergent body and societal ignorance", covers the experiences of living with lipedema and is based on five categories; "Captivated by a disintegrating body", "Face the impairments of a chronic condition", "Experience social exclusion", "Need emotional support to go on" and "Mull over an insecure future". The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future. CONCLUSIONS: Symptoms and restrictions caused by lipedema affect women's livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise healthcare awareness regarding difficulties experienced by patients with lipedema.