Lipedema and Ehlers-Danlos Syndrome: Is There a Connection?

Estimated reading time: 7 minutesLipedema is a widely underdiagnosed connective tissue condition affecting women, and for many people in the hypermobility community, it may be a relevant piece of their health picture.

I am delighted to host this guest blog by Kristy Dellacroce, an occupational therapist, Manual Lymphatic Drainage practitioner, and lipedema advocate. I was delighted to learn more about this condition, especially regarding the movement implications and recommendations for those living with lipedema.

This condition sits at the intersection of connective tissue, lymphatic, and vascular health, and researchers are becoming increasingly aware of the links with hypermobile EDS.

This article will explore the underlying physiology of lipedema, how it presents, and how to support individuals living with this condition. I hope it brings clarity, and perhaps some recognition of your own experience.

Everything below is written in Kristy’s words, drawing on her clinical experience and her own journey living with both lipedema and hEDS, unless otherwise noted.

What Is Lipedema? (And What It Isn’t)

Lipedema is a chronic, progressive adipose tissue disorder that involves connective tissue, lymphatic, and microvascular changes. It primarily affects women and is characterized by abnormal fat accumulation, most commonly in the legs, hips, buttocks, and sometimes arms (1-5)

Unlike typical weight gain, lipedema fat is resistant to diet and exercise and is often accompanied by pain, tenderness, swelling, and easy bruising (1,3,5). Lipedema is also frequently misunderstood and misdiagnosed as obesity or lymphedema, which can delay proper care and support (2-4).

Lipedema is not a lifestyle issue. It is a medical condition with a physiological basis.

What Causes Lipedema?

The exact cause of lipedema remains unclear, but research suggests it is a multifactorial condition involving genetic, hormonal, connective tissue, and vascular factors (1-4,6)

Contributing factors include genetic predisposition, hormonal influences, connective tissue abnormalities, microvascular dysfunction, lymphatic involvement, and inflammation.

Emerging research has identified abnormalities in connective tissue structure and extracellular matrix components in lipedema tissue (4-5). These findings have led researchers and clinicians to explore potential overlap between lipedema and connective tissue disorders such as Ehlers-Danlos syndrome.

From both my personal experience and what I consistently hear within the lipedema community, hormonal changes appear to be one of the most significant triggers. Many women report noticing the first signs during puberty, pregnancy, or menopause. This was very true in my own journey. Looking back, I can see that I likely hovered around Stage 1 since puberty, but it wasn’t until perimenopause that things began to accelerate more noticeably.

While lipedema is clearly multifactorial and involves several contributing factors, hormonal shifts seem to be one of the most consistent patterns observed. I hear this repeatedly in my community — women who suddenly notice changes in tissue texture, increased heaviness, or rapid progression during major hormonal transitions.

Lipedema Symptoms: What People Actually Experience

Lipedema symptoms extend far beyond physical appearance and can significantly impact daily life, emotional wellbeing, and quality of life (1-3).

Common symptoms include:

• Disproportionate fat distribution
• Painful or tender fat tissue
• Easy bruising
• Swelling that worsens throughout the day
• Heaviness in the limbs
• Fatigue
• Joint discomfort
• Soft or loose connective tissue
• Nodules or fibrotic tissue
• Sensitivity to pressure
• Cold skin in affected areas
• Reduced mobility in later stages
• Difficulty losing fat despite diet and exercise

These symptoms often overlap with other connective tissue and inflammatory conditions (1-4)

Living with lipedema symptoms goes far beyond physical discomfort — it carries a significant emotional and psychological burden. Many women in my community describe daily pain, heaviness, easy bruising, and a feeling of inflammation that doesn’t seem to improve despite their efforts. They often spend years searching for answers, only to be dismissed or told to simply lose weight.

For me personally, weight was not the primary concern, but the pain, heaviness, and bruising were very real. The emotional toll can be enormous. Many women begin to internalize the blame after years of being dismissed by healthcare providers. We start to believe it’s our fault, that we’re not trying hard enough, or that we’re simply doing something wrong — and this is simply not true.

Over time, this experience can also dysregulate the nervous system. Years of chronic inflammation, pain, and stress can leave many women feeling exhausted, overwhelmed, and disconnected from their bodies.

This is something I see consistently in the community — and it’s one of the reasons nervous system regulation has become such an important part of my work.

The Connection Between Lipedema and Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders that affect collagen, a protein that provides structure and support throughout the body (7).

Because lipedema involves connective tissue abnormalities, researchers and clinicians have begun exploring potential links between lipedema and EDS, particularly hypermobile EDS (hEDS) and hypermobility spectrum disorders (8-11)

Many individuals with lipedema report symptoms commonly associated with connective tissue disorders, including:

• Joint hypermobility
• Joint instability
• Soft or elastic skin
• Chronic pain
• Fatigue
• Autonomic dysfunction
• Poor tissue healing

These overlapping features have raised questions about shared underlying mechanisms involving connective tissue dysfunction, extracellular matrix abnormalities, and collagen structure (8-11)

While more research is needed, clinical observations and emerging literature suggest lipedema and EDS may frequently coexist (8-11). While not everyone with lipedema has Ehlers-Danlos syndrome or hypermobility, I see this overlap frequently in the community.

In my own journey, I have always had hypermobile joints, but I never fully understood how that might connect to lipedema. From my perspective, the connective tissue differences seen in hypermobility may contribute to how lipedema develops and progresses. Many women describe having very “forgiving” skin that stretches easily, allowing lipedema tissue to accumulate and expand over time.

As I’ve gotten older, I’ve started to feel the impact of hypermobility much more. What once felt like flexibility or even fun — positioning myself in unusual ways — has now turned into joint instability and discomfort. My right shoulder, in particular, has become increasingly unstable, and I’ve even been told I may need surgery to tighten the capsule due to ongoing weakening.

Shared Symptoms — Where Lipedema and EDS Overlap

When lipedema and hEDS coexist, the symptom picture becomes more complex and often more confusing to diagnose.

The most significant shared symptoms between lipedema and hEDS are chronic pain, joint hypermobility and instability, easy bruising, fatigue, and dysautonomia, including symptoms associated with POTS. Many people also experience connective tissue laxity, swelling, soft or fragile skin, poor tissue elasticity, and slower recovery from injury. Proprioception challenges and increased inflammation are also commonly reported when both conditions are present.

These shared symptoms likely contribute to delayed diagnosis and overlapping care needs (8-11)

Why Getting the Right Diagnosis Matters

Accurate diagnosis is important for developing an appropriate care plan. When lipedema and Accurate diagnosis is important for developing an appropriate care plan. When lipedema and EDS coexist, treatment approaches may need to be adjusted (8-11).

Aggressive compression may not be tolerated, and high-impact exercise can increase joint instability. Manual therapies may need modification, recovery times may be longer, and joint protection strategies often become necessary.

Understanding both conditions allows for a more individualized and supportive approach to care.

The Lipdema Foundation has many helpful resources.

Supporting Your Body When You Have Lipedema and EDS

Management often focuses on symptom support, connective tissue health, and improving quality of life.

Supportive strategies may include:

• Gentle strength training for joint stability
• Low-impact movement (walking, swimming, Pilates)
• Manual lymphatic drainage
• Compression (when appropriate)
• Fascia-focused therapies
• Nervous system regulation
• Anti-inflammatory nutrition
• Hydration
• Pacing and energy management
• Mobility support when needed

Because both conditions affect connective tissue, gradual and consistent approaches are often most beneficial (8-11)

Through my practice, I’ve observed that many of my clients with lipedema also demonstrate signs of hypermobility or connective tissue differences. They often report joint instability, “forgiving” skin, and a long history of feeling dismissed or misunderstood.

Beyond physical treatment, many clients share how meaningful it is to simply have a safe space where they feel heard and understood. Creating a supportive environment where women can talk openly about lipedema, share their experiences, and connect with others has become one of the most rewarding aspects of my work.

The sense of community among “lippy ladies” is incredibly powerful, and many women express relief in finally feeling validated and supported.

A Note on Movement With Lipedema and EDS

Movement can be beneficial, but should be approached carefully. Individuals with hypermobility may experience increased joint instability with high-impact exercise or excessive stretching (8-11).

Helpful approaches include strength training with proper form, Pilates, swimming, walking, resistance band exercises, and functional movement training. Listening to your body and working with knowledgeable professionals can help create a safe and sustainable movement plan.

From my perspective as an occupational therapist, gentle and supportive movement strategies tend to work best for individuals with lipedema. Many clients report benefits from walking, vibration plates, pneumatic compression, rebounders, and manual lymphatic drainage. Custom compression garments can also play an important role in providing support and improving comfort during movement.

Rather than high-intensity exercise, many individuals find that consistent, low-impact movement helps reduce symptoms while supporting joint stability and lymphatic flow. Finding movement that feels safe, sustainable, and supportive — rather than punishing — is often key to long-term success.

From Jeannie: If you are looking for a movement approach that is designed specifically for hypermobile bodies that need a thoughtful, individualised approach, the Integral Movement Method taught inside The Zebra Club may be a good fit.

It focuses on nervous system regulation, stability, and sustainability — gentle, consistent movement that works with your body rather than against it. Learn more about The Zebra Club.

Medical Disclaimer

This article is for informational and educational purposes only and is not intended as medical advice. Always consult with a qualified healthcare provider regarding diagnosis, treatment, or medical decisions. The information presented here is based on current research, clinical observations and client perspective.

FAQ

What is the connection between lipedema and Ehlers-Danlos syndrome?

Both lipedema and Ehlers-Danlos syndrome involve connective tissue dysfunction, and the overlap is most commonly observed with hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD). Shared features include chronic pain, joint hypermobility, easy bruising, and fatigue.

Can you have both lipedema and EDS?

Yes. Many individuals are diagnosed with both conditions, particularly hypermobile EDS (hEDS) or hypermobility spectrum disorder (HSD). Clinical observations and emerging literature suggest the two conditions may frequently coexist.

What are the shared symptoms of lipedema and hEDS?

The most common shared symptoms are chronic pain, joint hypermobility and instability, easy bruising, fatigue, swelling, and connective tissue laxity. Dysautonomia, including POTS symptoms, is also reported in both conditions.

Is lipedema a connective tissue disorder?

Lipedema is primarily classified as a chronic adipose tissue disorder, but it involves significant connective tissue changes, including abnormalities in extracellular matrix components and tissue structure.

How is lipedema diagnosed if there’s no blood test?

Lipedema is diagnosed clinically through a combination of symptoms, physical examination, and patient history. Key indicators include symmetrical disproportionate fat accumulation, pain or tenderness, easy bruising, and resistance to diet and exercise.

Does lipedema cause hypermobility?

Lipedema does not directly cause hypermobility, but the two frequently coexist. The overlap is most commonly seen with hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD), where connective tissue differences in lipedema may also contribute to joint laxity in some individuals.

What type of movement is safe with lipedema and EDS?

Low-impact, joint-aware movement is generally most supportive. Walking, swimming, Pilates, the IMM, gentle strength training, and resistance band exercises can help support lymphatic flow and joint stability without overloading hypermobile joints.

Kristy Dellacroce

Kristy Dellacroce is an occupational therapist, lipedema advocate, and founder of Della Luna Wellness based in Arizona. Living with lipedema and hypermobile Ehlers-Danlos syndrome (hEDS), she focuses on nervous system regulation and helping individuals reconnect with their bodies. She offers manual lymphatic drainage, sound healing, and leads educational initiatives for the lipedema community.

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