Pain affects many people with Lipedema and can range from mild to debilitating. Yet many questions about the origin, prevalence, and treatment of Lipedema pain remain unanswered.

Research into Lipedema pain is pulling back the curtain on these questions, but until we have better tools to understand its complexities, patients need to be able to have honest and meaningful discussions about this topic with their healthcare providers.

In this post, we’ll dive into some of the pressing and controversial issues surrounding pain in Lipedema diagnosis and treatment. We’ll also review why it’s crucial to pay close attention to how patients describe pain to make the best care decisions.

What is Lipedema pain?

Lipedema pain is often characterized as pain or tenderness in the limbs affected by excess adipose (fat) tissue. However, patients describe many different experiences of pain varying in intensity, quality (e.g. dull, throbbing, sharp, etc.), duration, and other factors. For some, pain perception changes throughout the day, reportedly peaking in the evening [1,2]. Overall, Lipedema pain has the potential to limit daily activities and reduce the quality of life, especially if severe.

Is pain a requirement for diagnosing Lipedema?

While all published guidelines mention the presence of pain as a possible symptom, none require it in order for a person to receive a Lipedema diagnosis [3,4]. You can view the full comparison of diagnostic criteria here.

However, some organizations do define Lipedema as not just an accumulation of adipose tissue, but an accumulation of painful adipose tissue, and some clinical practices specifically use pain to make diagnoses [5,6]. These differences may stem from an emphasis on different pieces of the research on Lipedema pain, which is still unsettled.

So what does the research say?

Overall, research has not established whether pain should be a required diagnostic criteria for Lipedema. What we do know is that up to 92% of Lipedema patients report pain [7], and in one study, more than half categorized their pain as severe or extremely severe [8]. As might be expected, multiple studies found that the prevalence of pain increases with Lipedema stage, severity, and the patient’s age [9,10,11,12].

But the Lipedema patients who experience no associated pain do meet other criteria for a diagnosis, especially in the earliest stages of the condition. For example, lipohypertrophy—a buildup of fatty tissue, or adipose,—is considered by some researchers to be a “pre-Lipedema” state. Although definitions of lipohypertrophy may vary, it is generally considered as adipose tissue that proliferates symmetrically but is not typically associated with pain or swelling [13,14].

However, to throw another wrench in the gears, some forms of lipohypertrophy may be painful [15], perhaps for reasons similar to lipedema, but perhaps by unrelated mechanisms. So we still don’t know if there is an early form of Lipedema that might be pain-free, or if patients with certain characteristics are less likely to experience pain. We hope that further work toward developing a Lipedema-specific understanding of pain will help find the answer.

Do we have good tools to help us understand Lipedema pain?

In short, not yet. We need to work towards a consistent method of characterizing and measuring a patient’s pain and understanding if it is changing in response to Lipedema progression or treatment. We also have yet to agree upon a measurable biomarker that can objectively differentiate Lipedema from other conditions, regardless of whether or not pain is present.

Typically, patients are asked to describe their pain on a linear scale using descriptors of intensity (mild to severe) or a numerical rating (0-10). But time and time again, we learn that this one-dimensional system does not adequately represent the range of experiences of pain that have been documented. Pain can vary even in the same person—pain intensity and quality may change throughout the day, and has been reported to peak in the evenings [1]. Some patients experience Lipedema pain flare-ups similar to pain in other chronic conditions that damage nerves [16,17].

One type of tool explored in recent research is patient-reported outcome measures (PROMs). PROMs are designed to broadly capture the quality of life and patient experience and often integrate pain into those surveys. However, more research is needed to determine whether PROMs are reliable in patients who were diagnosed with Lipedema partly on the basis of their pain and in those who were not.

Understanding the biological mechanisms behind Lipedema pain will help develop tools for assessing and managing it. Research does suggest that Lipedema pain may be caused by nerve cell loss, changes in neuropeptides, and inflammation, but the exact mechanisms of these possible causes are unclear and require further work. Genetics also likely play a role.

As patients and doctors navigate the therapeutic options for Lipedema, they will need to know how each treatment may impact pain levels, thereby either maximizing or limiting function.

What can doctors do about Lipedema pain?

The current gaps in research around Lipedema pain do not mean that pain should be deprioritized in Lipedema management plans. For healthcare providers, listening to and believing patients is of paramount importance when assessing and managing pain. Patient experience is, after all, what research in Lipedema pain seeks to capture.

Doctors should ask about pain and maintain sensitivity to the multidimensional experience of pain, regardless of a patient’s Lipedema stage. If a patient is relatively pain-free, doctors should understand that pain can still flare up and educate patients accordingly. Additionally, patients who do not experience pain in fat tissue may report other forms of pain that are linked, but perhaps indirectly, to their Lipedema—for example, fat pads causing knee pain and fat accumulation causing gait issues and orthopedic pain.

Here are some questions doctors can ask to guide their assessment of Lipedema pain:

What is the quality of your pain? Is it dull, sharp, throbbing, aching, etc.?
How often do you experience pain and what seems to trigger it and help it?
Does your pain limit what you can do in your daily life?
What are your concerns about your pain?

What can patients do about Lipedema pain?

Patients should regularly have in-depth conversations about their pain with their doctor, beyond simply describing or rating its intensity. They may wish to consider tracking their pain using a journal or other methods to discern patterns or understand how it may interfere with daily activities like sleep or work. Understanding that pain is complex, multidimensional, and sometimes evolving may help patients feel comfortable going beyond the pain scale to describe what pain feels like to them.. We’ve created a Lipedema Patient Bill of Rights to help support patients seeking care for their Lipedema pain and other symptoms.

We have more work to do

As we’ve learned, more studies focusing on Lipedema pain are needed. But we don’t need to wait for additional findings to start better addressing pain. Trusting patients’ experiences while knowing that Lipedema pain can flare and change over time can inform management strategies.

As always, the Lipedema Foundation remains committed to supporting research that deepens our understanding of Lipedema pain and other aspects of the condition. Stay tuned!

CITED REFERENCES AND LINKS