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Lipedema is a chronic and progressive disease that primarily affects women. It is often misdiagnosed as obesity or primary lymphedema, leading to a lack of understanding and appropriate treatment options. Lipedema’s physical and psychological consequences significantly impact the quality of life of those who suffer from it. This comprehensive guide will delve into women’s experiences with lipedema, highlighting their challenges and the importance of providing adequate care and support.

What is Lipedema?

Lipedema is characterized by the abnormal deposition of subcutaneous adipose tissue, primarily in the lower body parts, such as the buttocks and legs. This adipose disease is of unknown etiology and tends to manifest during or after puberty, although it can also occur in connection with pregnancy or menopause. The accumulation of fat and fibrous tissue leads to bilateral swelling and enlargement, causing discomfort, bruising, severe pain, and limited mobility. Unfortunately, the progression of lipedema varies greatly, making it challenging to predict and control.

Conservative therapy, which focuses on patient education, weight control, manual lymphatic drainage therapy, and compression therapy, is commonly used to manage lipedema. Surgical interventions, such as liposuction, may be necessary in some cases. However, there are no easy solutions for treating lipedema, and further research is needed to develop more effective interventions.

The Impact on Quality of Life: Physical and Psychological Morbidity

Living with lipedema has a profound effect on the quality of life of women. The physical symptoms, including pain, fatigue, and limited mobility, significantly hinder their daily activities and overall well-being. Women with lipedema often describe their bodies as burdensome, feeling controlled and hindered by the swelling and pain they experience. The constant pain and discomfort can lead to exhaustion and a sense of helplessness.

Furthermore, the psychological impact of lipedema should not be overlooked. Women with lipedema often face fat-shaming and negative judgments from others, which affects their self-esteem and body image. They may feel unattractive and struggle with intimacy and sexual activity. The changes in their bodies, such as the appearance of loose and bumpy skin, pose additional challenges regarding hygiene and self-care. The lack of understanding and support from healthcare professionals further exacerbates their emotional distress.

Seeking Professional Care: Challenges and Unsatisfactory Advice

Women with lipedema frequently seek medical help to address the changes in their bodies and the increasing pain they experience. However, obtaining an accurate diagnosis can be a lengthy and frustrating process. Many women have encountered healthcare professionals who lack knowledge about lipedema, leading to misdiagnosis or dismissive attitudes. Instead of receiving appropriate care, they are often advised to engage in weight loss exercises or visit physiotherapists and dietitians without addressing the underlying lipedema.

Women with lipedema often take matters into their own hands, researching and gathering information to understand their condition better. Some find the diagnosis themselves and present it to their doctors, only to face skepticism and hurtful comments. The lack of awareness and understanding among healthcare professionals contributes to feelings of isolation and a lack of support for women with lipedema.

The Need for Adequate Care and Support: Treatment Options and Decision-Making

Receiving a diagnosis of lipedema should be a turning point towards appropriate care and treatment. However, many women find themselves at a dead end. Despite having a confirmed diagnosis, they struggle to access the care they need. The limited knowledge about lipedema among healthcare professionals hinders the development of effective treatment strategies. Women with lipedema often have to fight for liposuction surgery, which can be crucial in managing the disease. They may also seek treatment abroad, incurring additional financial burdens.

The lack of guidance and support in medical decision-making further compounds the challenges faced by women with lipedema. They often feel alone, left to navigate their treatment options without sufficient professional advice. Some women have found supportive doctors who listen to their concerns and collaborate with them to develop appropriate treatment plans. However, these rare instances highlight the urgent need for increased awareness and knowledge among healthcare professionals.

The Physical and Emotional Burden: Pain and Fatigue

Pain and fatigue are two significant symptoms that women with lipedema experience daily. The pain associated with lipedema is often described as aching, heavy, and unpredictable. It can worsen with movement and become stabbing in nature. Women with lipedema express feelings of exhaustion and describe the constant pain as debilitating. The invisible nature of their symptoms makes it challenging for others to understand and empathize with their experiences.

Fatigue, another common symptom of lipedema, further adds to the physical and emotional burden. Women with lipedema describe feeling constantly tired, which affects their ability to engage in daily activities. The lack of understanding and validation of their pain and fatigue by others, including healthcare professionals, leads to feelings of neglect and frustration.

Dignity and Respect in Healthcare Encounters: The Importance of Understanding

Encounters with healthcare professionals play a crucial role in the lives of women with lipedema. Unfortunately, many women feel that their experiences are not taken seriously, resulting in a lack of dignity and respect. Healthcare professionals’ skepticism and dismissive attitudes toward their pain and symptoms contribute to feelings of violation and humiliation. Women with lipedema emphasize the need for healthcare professionals to listen, understand, and acknowledge their experiences.

Creating a supportive healthcare environment requires healthcare professionals to educate themselves about lipedema and its impact on patients’ lives. By validating women’s experiences and providing appropriate care, healthcare professionals can alleviate the emotional distress associated with lipedema. Collaborative decision-making and the involvement of specialists can also contribute to better treatment outcomes and improved quality of life.

The Journey Towards Self-Acceptance: Body Image and Self-Esteem

Living with lipedema often leads to negative body image and decreased self-esteem. Women with lipedema may feel unattractive and struggle with self-acceptance. The changes in their bodies, such as the irregular distribution of fat and the appearance of cellulite, contribute to dissatisfaction and insecurity. The societal pressure to conform to narrow beauty standards exacerbates these negative feelings.

However, some women find solace in supportive relationships, particularly with their partners. Feeling desired and loved by their partners is essential for their overall well-being. The challenges of intimacy and sexual activity due to lipedema can strain relationships, but open communication and understanding can help foster intimacy and emotional connection.

Empowering Women with Lipedema: Education and Support Networks

Education and support play a vital role in empowering women with lipedema. Access to accurate information about the condition, treatment options, and self-care strategies can help women make informed decisions about their health. Support networks, both online and offline, provide a sense of community and understanding. Connecting with other women with similar experiences can offer emotional support and practical advice.

Additionally, psychological support is crucial for women with lipedema. Counseling or therapy can help address body image concerns, manage emotional distress, and enhance overall well-being. By addressing lipedema’s physical and emotional aspects, women can regain control over their lives and improve their quality of life.

The Way Forward: Advocating for Change and Further Research

The experiences of women with lipedema highlight the urgent need for change in healthcare systems and increased research on the condition. Healthcare professionals must be educated about lipedema to provide appropriate care and support. Developing evidence-based treatment guidelines and exploring novel interventions are essential to improve outcomes for women with lipedema.

In conclusion, lipedema has a significant impact on the quality of life of women who live with this chronic and progressive disease. Their physical and psychological burdens require healthcare professionals to approach lipedema with empathy, understanding, and respect. By providing adequate care and support, we can empower women with lipedema to navigate their journey towards better health and well-being.

Fall has arrived and with the cold weather looming you may be wondering what you can eat that can be both fulfilling and anti-inflammatory for your lipedema care. It’s easy to learn what you should and shouldn’t eat but sometimes hard to stick to it without the background knowledge of why. Knowing the why can help you make the best decisions for yourself and maybe incorporate some things that you may not have thought of before.   

Follow an Anti-Inflammatory Diet

It is recommended to follow the RAD diet (or Rare Adipose Disorder diet). The RAD diet is basically a modified Mediterranean diet that helps maintain a low glycemic index. The goal is to keep your insulin levels low by avoiding refined or processed starches and sugars that are found in pasta, rice, bread, corn, and potatoes. Avoiding processed carbs and processed food, in general, will help keep your inflammation at bay and in turn reduce your lipedema symptoms. Along with reducing starches, avoiding gluten(found in wheat, rye, and barley) all together may be necessary to limit flare-ups. 

For a healthy lipedema care meal plan, you will want a nutrition plan that is high in omega 3’s. Mainstream health organizations recommend a minimum of 250-300 mg of omega-3s per day, the FDA recommends not to exceed 3000 mg of omega-3, but European Food Safety Authority (EFSA) says up to 5000 mg of omega-3s per day is safe. 

Click Here for More Diet and Supplement Recommendations!

Why Are Omega-3s so Important if You Have Lipedema 

Omega-3s reduce the production of some substances (eicosanoids and cytokines) released during an inflammatory response in the body, reducing inflammation will help reduce lipedema flare-ups. Some added bonuses of increasing your omega-3 consumption are; it may help fight auto-immune diseases, decrease symptoms of anxiety and depression, improve eye health, promote brain health during pregnancy, improve risk factors of heart disease, reduce symptoms of metabolic syndrome, improve mental disorders, fight age-related mental decline, reduce fat in your liver, improve bone and joint health, alleviate menstrual pain, and improve sleep. 

Obviously incorporating more omega-3s into your diet will reduce inflammation and other symptoms that may arise from lipedema but what foods and supplements are best? Fish is high in omega-3s such as Mackerel (4,107mg per serving), salmon (4,123 mg per serving), herring (946mg per serving), oysters (370mg per serving-about 6 raw oysters), sardines(2,205mg per serving), anchovies(951 mg per serving), caviar(1,086 mg per serving). Now if you’re not crazy about fish, there are other options, flaxseeds, chia seeds, walnuts, and soybeans all have a similar amount of omega-3s per serving to their fish counterparts. 

**It should be noted that soybeans are high in omega-6s which can cause inflammation so you may want to leave the soybeans out of your diet.

Along with omega-3s, there should be a heavy focus on fiber in your diet plan. It is recommended that men get 38 grams of fiber a day and women 25 grams of fiber per day. Fiber can be split into soluble fiber(metabolized by good bacteria in the gut, water-soluble) and insoluble fiber(does not dissolve in water). Fiber feeds the good gut bacteria and works with our bodies in symbiosis by breaking down what we cannot on our own. By consuming fiber, we are feeding our gut bacteria “prebiotics” which the bacteria break down to produce necessary nutrients, short-chain fatty acids. Short-chain fatty acids feed the cells in the colon which can reduce gut inflammation. Fiber is also a necessary element to help you feel full and stay full longer! Also, it slows down digestion by absorbing water and in turn, increases the number of vitamins and nutrients the body can absorb. 

Omega-3s and fiber are incredibly important to reduce lipedema inflammation but what does that mean for what you should eat? Think of the standard food pyramid, instead of the high consumption of grains, it’s recommended to consume high levels of low-carb vegetables, herbs, and spices, such as cabbage, eggplant, carrots, cauliflower, Bok choy, peppers, broccoli, cucumbers, asparagus, etc. Here are some herbs for an extra boost of anti-inflammatory action: ginger, garlic, turmeric(with black pepper for absorption), cardamom, green tea, rosemary, and cinnamon. 

Next on the pyramid, you should consume a smaller amount of healthy fats like nuts- Peanuts, almonds, Brazil nuts, macadamia nuts, hazelnuts, pecans, avocados, coconut oil, and olive oil. Brazil nuts in particular have a large amount of selenium, a necessary nutrient that helps reduce the painful swelling that lipedema causes. It should be noted that only two brazil nuts a day can make a difference!

The next part of our pyramid is healthy protein. We’ve touched on a few fish for your omega-3s but you could also include eggs, chicken, turkey, tofu, shrimp, and tuna. Protein is another important component to help you feel full and stay full longer which helps reduce cravings. 

Lastly, we have lower-carb fruits, beans and legumes, and moderate-carb vegetables. Some lower-carb fruits include berries, melons, kiwis, mangos, and raisins. It is best to try to eat the rainbow! Each color has different nutrients and antioxidants necessary for a long-term healthy body and it’s much easier to track the colors you’re eating versus every nutrient each fruit/vegetable has in it. 

Patients with lipedema often have low levels of vitamin D3 so supplementing with four times the daily recommended dose of vitamin D is helpful along with Diosmin, and selenium if you are not able to eat brazil nuts. Fish and krill oil are great supplements to take on days you are not consuming high amounts of omega-3s

Now that we’ve covered food, what else can you do to keep lipedema symptoms aways?  There are multiple ways to keep your lymphatic fluids flowing such as yoga, dry brushing, massage, and compression garments. 

Yoga & Deep Breathing

Yoga is all around great for your whole body by lengthening, strengthening, and deep breathing, it can improve your health and mental wellbeing. Lymphatic yoga is even better for lipedema! Lymphatic Yoga can help move the stagnant fluid in the lymph system through the body and to the heart. Dynamic yoga such as sun salutations is great because it keeps you moving from one pose to another and encourages the movement of fluids. Any inversion poses and backbends will help fight gravity that keeps fluids in the lower part of your body from moving to the upper parts. Twists help with stimulating organs and stretching the spine. 

The lymphatic system lies just below the surface of the skin so dry brushing has been shown to stimulate the lymph system and help move venous blood. Dry brushing should be done with long firm strokes towards the heart. Start from your feet to the legs and groin and then hand to your armpits. An added bonus is your skin will be exfoliated and feel amazing! 

Massage & Deep Breathing for Lipedema Care

Lymphatic massage is a great way to reduce swelling and improve lymphatic circulation. You can go to a professional massage therapist who specializes in lymphatic massage or you can learn how to do it on yourself at home! When performing these techniques you should make sure you are relaxed, don’t perform this if it is too painful, and it should only affect your skin, so deep pressure is not needed.

Start by connecting to your deep breaths, slowly inhaling from your nose and out through the mouth. Try to make these breaths as long as possible with a pause between each breath. Like the dry brushing, you start from your feet and pull the skin up towards your heart with light pressure, so the skin stretches. Continue this all around the ankles, then calves and thighs. 

Compression

Last but not least, you can use compression garments! Luckily it will be getting colder so it won’t feel so hot and restricting to adding in an extra layer of clothes. It is best to use medical-grade garments because fluid flows from higher pressure to lower pressure and medical-grade compression garments have graduated compression. The compression at the lower part of the garment will force lymphatic fluid from the lower part of your body up through your body back towards your heart. Again, we’re fighting gravity so compression garments will need to be tighter for the legs versus your arms.

Learn More About Compression Garments Here!

You Got This

Now you have all the options to keep your lipedema symptoms low over the winter months, from eating the rainbow to yoga, massage, and compression garments. It’s a difficult disease to battle but you’re not alone, and now you have a few extra tools that can help you along the way. Contact us today!

As of May 28, 2021, Dr. Wright and nearly two dozen other Lipedema experts led by Dr. Karen Herbst published 85 consensus statements making up the first ever Standard of Care Guidelines for Lipedema in the United States. Prior to it’s publication, other countries such as Germany, Spain, the United Kingdom and The Netherlands have documented and published Standards of Care for women with Lipedema, but the United States continued to lag behind it’s international colleagues. Ultimately, this resulted in American women with Lipedema being underdiagnosed, misdiagnosed, dismissed, and underserved. This publication is the first of many steps in the right direction to increasing awareness and proper treatment for women with this disease.

What are “Standard of Care” guidelines, and why are they important?

A standard Lipedema care typically refers to the formal guidelines that are generally accepted in the medical community for the treatment of a specific disease, condition, or ailment of some kind. These guidelines include important information including how to properly recognize and diagnose the condition in question, followed by the treatment process a medical provider should follow for patients with symptoms of the medical issue. The standard of care provides “best practices” developed by experts in the field who have come to a consensus of what is the most appropriate way to treat the condition at hand. 

 

The importance of having a standard of Lipedema care in place can be best understood by highlighting what happens when a standard is not in place, as we’ve seen in Lipedema prior to today. Clinical practice guidelines are compiled by the National Guideline Clearinghouse, which provides medical providers the ability to stay up-to-date on what the standard of care is in areas of treatment. When Lipedema is not included in these national guidelines, there are no resources for physicians to refer to. 

Without guidelines to the disease, symptoms checklists, or treatment plans, medical providers are unlikely to understand the disease or recognize it when they see it in their patients. Most women with Lipedema discover the disease on their own and bring it to their doctor to discuss a report being dismissed by their providers, who are unaware of the disease and have no medical expert guides as resources to refer to. This publication is a very important and exciting step to ending this cycle. 

Click Here to Learn More About the Lipedema Standard of Care Guidelines!

A Background on Lipedema

An estimated 11% of the world’s female population, and 16 million women in the United States alone, are affected by Lipedema, a chronic, progressive, and disruptive fat disorder. Also referred to as Lipoedema in European countries, this disorder has a variety of symptoms, ranging from generally irritating to aggressively painful. Patients suffer from swollen, sensitive areas, unsightly, bulging and indented skin, and a disproportionately larger lower body. Without answers or solutions, patients often also suffer from secondary obesity. By the time they make it to a Lipedema specialist, they report similar stories; their primary doctors had not heard of Lipedema or dismissed it as unfounded. These medical professionals’ lack of knowledge leads to improper diagnoses such as general obesity, prescribing diet and exercise as a cure, and sometimes extraordinarily invasive and dangerous weight-loss surgeries. The journey towards diagnosis and treatment takes both a mental and physical toll of those it touches, a problem that the Standard of Lipedema Care guidelines seek to alleviate. 

11 Highlights from Lipedema’s Standard of Care Lipedema Guidelines

The Standard of Care for Lipedema guideline explains the following in far greater depth and should be the go-to resource for everyone in the Lipedema community, from providers to patients and their families. Below are only a few examples of action items provided, and the full standard should be consulted here for a comprehensive guide to understanding Lipedema, diagnosing it, and treating it across patients. 

 

  1. Knowing the barriers to treatment for women with Lipedema. It will be no surprise to women with this disease that patients have difficulty in self-care, limited mobility, experience a social stigma attached to their increased body size, experience anxiety and/or depression, and face a lack of knowledge in their healthcare providers. Plus, there are little to no affordable treatment options, and limited non-surgical options that offer any meaningful solutions. 
  2. There are no known medications that specifically treat Lipedema. Any use of medications or supplements should focus on reducing inflammation in the tissue, fibrosis, swelling, and pain. Medications that increase edema (swelling) or weight gain should be avoided and/or replaced with medications that are weight neutral or promote weight loss. 
  3. Lipedema tissue is resistant to diet, exercise, or bariatric surgery. This is likely due to the fibrotic component of loose connective tissues. While weight reduction of non-lipedema obesity is beneficial to reduce metabolic complications, the difference between Lipedema and non-Lipedema weight is imperative to successful treatment. 
  4. People with lipedema should be assessed for lipedema, lymphedema, posture, balance, muscle strength, gait and joint hypermobility. People with lipedema may benefit from postural and core exercises, muscle strengthening exercises, gait training, neuromuscular re-education, and deep abdominal breathing to increase lymphatic flow and stimulate the parasympathetic system. 
  5. Conservative (non-surgical) therapies or lipedema may help slow progression and possibly relieve symptoms, but at present there is little evidence on their effectiveness. Standard conservative therapy for lipedema includes nutritional guidance, manual therapy, compression garments, recommendations for a pneumatic compression device (external pump) and a home exercise plan.
  6. Lipedema reduction surgery is currently the only available technique for removing abnormal lipedema tissue. Adipocytes, nodules, fibrotic extracellular matrix, and other non-adipocyte components cannot be removed without lipedema reduction surgery, which utilizes suction lipectomy (liposuction), excision and manual extraction that spares blood and lymphatic vessels. Lipedema reduction surgery significantly improves symptoms,mobility, stance, gait, valgus rotation/deformity of the knee and ankle, quality of life, and redistributes and restores the plantar arch. It also improves lymphatic symptoms, reducing the need for compression and manual therapy and can improve lymphatic function as shown by radionucleotide lymphangioscintigraphy.
  7. Most people with lipedema have leg pain, all have leg swelling, either pitting or non-pitting, and many have underlying chronic venous disease. The physical examination should include inspection and palpation of pulses in the limbs. Pulse palpation in people with lipedema may be difficult and painful due to limb size. Common venous conditions seen in people with lipedema include increased risk for venous thromboembolism and conditions associated with chronic venous disease: varicose veins, chronic venous insufficiency, and telangiectasias (spider veins).
  8. Updated Definition of Lipedema: While lipedema is still considered a fat disorder, new evidence further clarifies that all of the components loose connective tissue in the subcutaneous space maybe affected by lipedema these include adipose tissue,  fibrous tissue lymphatic , veins and arteries of the subcutaneous space. Therefore lipedema should be considered a loose connective tissue disorder not merely a fat disorder even though abnormal fat accumulation is a principal characteristic of lipedema.
  9. The clinical criteria for the diagnosis of lipedema was agreed on.
  10. Stages and Types of Lipedema was agreed on. Lipedema was divided into stages 1 through 3 stage 1. Stage one is typified by small nodules in the subcutaneous fat stage 2 is characterized by larger nodules and visible indents in the surface of the fat in stage 3 is characterized by lobules in the skin. Some authors have described a 4th stage for lipedema and called it lipolymphedema. The proposed 4th stage would be when lymphatics are affected and cause a secondary lymphedema from the lipedema. Our current understanding of lipedema is that lymphatics are affected at all stages of lipedema. While stage 2 and 3 more often show lymphatic impairment than stage 1 there is no clear stage of lipedema where lymphatic are affected. 

 

TABLE 1: Classification of lipedema severity according to Stößenreuther (2001).

STAGE SKIN SURFACE SUBCUTANEOUS ADIPOSE TISSUE
STAGE 1 NORMAL SMALL NODULES
STAGE 2 UNEVEN BIGGER NODULES
STAGE 3 LOBULAR DEFORMATION LARGE NODULES & DEFORMITIES

 

TABLE 2: Types of lipedema, used to describe the location of lipedema fat

TYPE LOCATION
TYPE I BUTTOCKS, HIPS (“SADDLEBAGS”)
TYPE II BUTTOCKS TO KNEES, WITH FOLDS OF FAT AROUND THE INNER KNEE
TYPE III BUTTOCKS TO ANKLES
TYPE IV ARMS
TYPE V LOWER LEGS

 

  1. Common  Diseases Associated with Lipedema Diagnosis.

Common complications of lipedema including lymphedema non lipedema obesity venous disease and hypermobile joints were described.

 

Put Criteria for EDS hs .  Beighton Criteria.

Table 2: Beighton’s joint hypermobility score.

The ability to Right   Left
(1) Passively dorsiflex the fifth metacarpophalangeal joint to ≥90◦ 1   1
(2) Oppose the thumb to the volar aspect of the ipsilateral forearm 1   1
(3) Hyperextend the elbow to ≥10◦ 1   1
(4) Hyperextend the knee to ≥10◦ 1   1
(5) Place hands flat on the floor without bending the knees   1  
Total possible score   9  

One point can be gained for each side for maneuvers 1–4 so that the hypermobility score will have a maximum of 9 points if all are positive. (12)  12. Vounotrypidis P, Efremidou E, Zezos P, et al. Prevalence of joint hypermobility and patterns of articular manifestations in patients with inflammatory bowel disease. Gastroenterol Res Pract. 2009;2009:924138. doi:10.1155/2009/92413

References:

Standard of care for lipedema in the United States

https://pubmed.ncbi.nlm.nih.gov/

Lipedema.com

Each year the country stops and takes a month to give more awareness to lipedema and those who have been diagnosed with it. June has been designated as Lipedema Awareness Month and has been observed for several years now. Take a look at what you should know about his important month each year:

History of Lipedema

When observing Lipedema Awareness Month, it is important to understand the start of lipedema itself. Lipedema was first recognized in 1940 by Mayo Clinic physicians Dr. Edgar Hines and Dr. Edgar Allen. They specifically identified the fat tissue that typically develops in the legs and occasionally arms for those diagnosed with lipedema. Even with the condition having been identified for 80 years, we still do not know everything there is to know about its cause.

Lipedema Awareness Month

Lipedema Awareness Month helps to identify lipedema for those who were not familiar with it before. Several different non-profit organizations currently offer education and research into understanding lipedema further. Become more aware of what is currently being done in this field and help those who are currently researching possible causes and cures for lipedema. One great organization to which you can donate is The Lipedema Project. You can also attend online and in-person programs to help you handle living with lipedema. Having a community behind you can make it much easier to deal with this disease.

Spread Lipedema Awareness and Learn More Here!

Fat Disorders Research Society Conference

Each year during Lipedema Awareness Month, the Fat Disorders Research Society put on their annual conference to help education those with lipedema and discuss current trends related to it. Panels are led by some of the top clinicians in the field can cover topics such as managing pain, getting emotional support, helping your lymphatic flow, and much more. Additional panels will show findings from current research into lipedema and what they mean for the future. Unfortunately, this year’s Fat Disorders Research Society Conference has been cancelled due to the ongoing COVID-19 health crisis. However, start planning today if you are interested in next year’s set of events that will be announced in the following months.

Always Stay Up to Date

Participating in Lipedema Awareness Month is always important, but so is staying knowledgeable about lipedema at all times. Lipedema.Net along with Dr. Wright will continue to offer you everything you need to know about lipedema from research to current treatments being offered. Let us help you live easier with lipedema.

How common is lipedema? Find out here.