I hope all my followers find this post informative.  I was not well informed about Lipedema as a clinician so I want to help educate the OT community about the impact we can make for Lipedema patients and connect OTs to the wonderful resources offered by the Lipedema Foundation. 

Best ~ Cheryl Hall, OT

Lipedema & Occupational Therapy: A Practical Guide for Clinicians

Lipedema is a chronic condition that occurs almost exclusively in women and manifests as a symmetrical buildup of often-painful fat in the limbs, sparing the hands and feet. It may also affect the hips or buttocks, and less often, the abdomen.

Despite not being rare (prevalence estimates range from 5-12% of the adult female population), Lipedema is often underdiagnosed, and many patients go years without proper care. The condition is commonly confused with obesity or lymphedema, and it can take patients up to 10 years to receive a formal diagnosis. Occupational Therapy Practitioners can make a meaningful impact by supporting individuals with Lipedema through symptom management, energy conservation techniques, and improved participation in daily activities. Anecdotally, we’ve also heard that OTPs have sometimes been the first HCP to identify the condition.

For a clinical overview, refer to the Lipedema Foundation’s Clinician’s Guide to Lipedema.

The OTP’s Role in Lipedema Care

As with other conditions, Lipedema patients need support managing their symptoms so that they are able to get back to living a full life and engaging in a full range of daily activities  The primary areas where Lipedema patients need support are: pain management, preserved mobility and function, joint stability and protection, and fatigue minimization.

A Note on Documentation: Many patients may have difficulty getting treatments like compression garments/pumps or surgery covered by their insurance company, and may need to submit therapy records that document functional deficits. It is critical for the OTP to document any observed challenges or limitations related to activities of daily living, instrumental activities of daily living, mobility, or skin irritation/breakdown secondary to Lipedema.

Visit Lipedema.org/therapists for more information on treatments.

Strategies OTPs Can Integrate into Lipedema Care Plans

Focus on Functional Improvements with Fatigue Minimization

Why it’s relevant:
Lipedema may cause pain, swelling and/or heaviness, impaired mobility, and increased fatigue with gait, transfers, ADLs, and IADLs. Comorbidities like lymphedema and obesity can exacerbate these issues, and make it difficult to complete daily routines. Occupational therapy professionals are uniquely positioned to implement energy conservation techniques, helping people with Lipedema avoid overexertion and flares in pain. OTPs can implement the following strategies:

• Pacing and energy conservation: Educate patients on taking rest breaks throughout the day to avoid fatigue. This can help decrease pain and/or swelling flares from overexertion. It might take some trial and error for patients to learn how many breaks they require to optimize energy conservation, and may fluctuate depending on the activity (i.e. completing a normal workshift versus baking a cake for their child’s birthday).
• Activity scheduling:  Teach patients about the benefit in planning and prioritizing activities, with the most important tasks for the day completed first. Place emphasis on the value of not over-scheduling the day, which could lead to burnout or fatigue. One strategy that can be implemented is the Spoon Theory, which is a technique that those living with chronic pain use to explain how they ration energy for the day. See more on the Spoon Theory here.
• Implement proper body mechanics: Lipedema tissue can be heavy, bulky, and/or painful, making tasks like bending, reaching, or lifting difficult. OTPs can assess posture (during sitting, standing, and completing tasks) to ensure patients have proper alignment and are using safe body mechanics during ADLs/IADLs/transfers/gait/work. These interventions can minimize risk of injury or fatigue.
• Low-impact movements: Aquatic exercises can be ideal for this population as the buoyancy of water decreases joint stress, which can be beneficial for pain control, and the hydrostatic pressure of water provides natural compression, supporting lymphatic flow and circulation. Patients with Lipedema may be able to exercise more efficiently and with less fatigue in water than on land.

Address Pain, Skin Care, and Swelling

Why it’s relevant:
Many patients with Lipedema complain of pain and/or discomfort. The pain may range from mild to debilitating, and might be described in different ways – from aching, throbbing, or tender, to stabbing, sharp, or shooting. Many patients with Lipedema also complain of swelling and/or heaviness in the limbs. OTPs can address these issues through the following techniques:

• Compression therapy: Compression therapy, such as the use of compression garments and/or pneumatic compression devices (pumps), are often useful strategies to control Lipedema symptoms such as pain and/or swelling. The fit and type of compression garments and pumps are important, so OTPs should refer to specialists comfortable with prescribing and fitting for these tools. Consider using DME companies with certified compression fitters in your area, reaching out to compression garment or pump companies to see if you have local sales representatives that can help, or checking out the Lipedema Foundation’s Provider Directory to see specialists who treat Lipedema and can make recommendations. Instruction will also be helpful for donning and doffing techniques.
• Good skin care: As Lipedema progresses, patients may develop lobules (large, overhangs of tissue) that may cause friction and lead to things like skin irritation, breakdown, or infection. OTPs can educate patients on the proper care of these areas. If patients have developed skin breakdown or a wound that the OTP is not comfortable treating, have a plan for referring to a wound care specialist that is better equipped to manage these issues.
• Certified Lymphedema Therapist (CLT) collaboration: Though some OTPs may choose to become certified in lymphedema therapy (CLT), this may be outside the scope of practice for a lot of therapists. It’s important to establish relationships with CLTs local to your area so you can refer to them as needed for Complete Decongestive Therapy (CDT) for patients with Lipedema and/or lymphedema. CDT includes manual lymphatic drainage (MLD), compression bandaging or fitting with garments, and tailored exercise routines. Other types of therapists besides CLTs may also be well equipped to offer specific treatment for patients with Lipedema. To find a specialist in your area, visit the Lipedema Foundation’s Provider Directory.
• Pain Education and Coping Mechanisms: Teaching patients about the biopsychosocial aspects of pain, relaxation, mindfulness and self-regulation techniques, good ergonomics, use of adaptive equipment, and activity modification can be useful in managing Lipedema-related pain. Some valuable strategies for pain management that OTPs can implement include: diaphragmatic breathing, progressive muscle relaxation, guided imagery/visualization, meditation, biofeedback, joint protection, manual techniques and/or physical modalities.

Support Mental & Emotional Health

Why it’s relevant:
On average, it can take 10 years to receive a Lipedema diagnosis after seeking medical attention. Many patients report being dismissed by medical professionals, who claim that their pain is imagined or exaggerated, or that they need to diet and exercise more rigorously to lose Lipedema-related fat. As a result of this and other challenges, feelings of hopelessness, self-doubt, isolation, eating disorders, and in the worst cases, suicide, may occur. OTPs can provide valuable assistance in managing Lipedema symptoms, such as pain, and helping patients navigate the complexities of treatment and the impact of Lipedema on daily life. Some strategies include:

• Address emotional responses to pain and QOL impacts: OTPs can validate feelings associated with chronic illness, pain, and functional limitations. Implementing therapeutic use of self and active listening can help patients feel safe sharing their experiences.
• Encourage social & role re-engagement: OTPs can help patients re-engage in valued social roles, restore identity and self-worth, and/or facilitate participation in support groups, especially when Lipedema has led to role disruption, social withdrawal, disability leave, or loss of mobility.
• Mental health professional collaboration: While OTPs are skilled in addressing emotional, mental and behavioral health related to function, diagnosing and treating more complex disorders that can accompany Lipedema (depression, eating disorders, body dysmorphia, etc.) should be handled by a qualified mental health professional. OTPs can monitor a patient’s behavior, mood, affect, engagement, and function to screen for possible concerns. Some screening tools include the PHQ-9, GAD-7, WHOQOL-BREF, or PROMIS. OTPs should always obtain informed consent prior to using these screening tools, interpret and document results carefully, and make appropriate referrals as needed to ensure comprehensive care for the patient.

Implement Environmental Adaptations

Why it’s relevant:
Later stages of Lipedema typically cause an increase in bulky tissue, lobule formation, impaired endurance, and limited mobility. Increased pain can also influence functional performance. Patients may experience difficulty with ADLs, IADLs, transfers, gait, and navigating their environment. OTPs can implement the following strategies to minimize environmental barriers and optimize function:

• Home modifications: Use of environmental modifications such as ramps, handrails, grab bars, elevated seating, and adjustable beds can make a significant impact on a patient’s ability to safely and more easily function in their environment.
• Make layouts safer and more efficient: Reducing strain on joints, protecting hypermobile joints, and minimizing overall exertion is critical for patients with Lipedema, especially in later stages. By helping with reorganization of commonly used areas, implementing seating support for tasks, making sure walking paths are wide and free of clutter and trip hazards, and promoting safe body mechanics when accessing home or work environments, OTPs can significantly increase safety and independence for patients with Lipedema.
• Utilize adaptive equipment or assistive devices: Bending, squatting, lifting, reaching, or standing for extended periods may be difficult for someone with Lipedema. OTPs are well-equipped to identify barriers to function and implement the use of adaptive equipment or assistive devices (sock aids, dressing sticks, reachers, shower chairs, hands-free hair dryer holders, long-handled sponges, rollator walkers with seats, etc.) to help patients regain independence and safety in daily life.

Living with Lipedema can be overwhelming, and can present challenges in physical, emotional and mental well-being. Occupational therapy practitioners are uniquely qualified to tailor thoughtful treatment plans and interventions to optimize function, independence, safety and hope for those with this condition.

Additional Resources for Occupational Therapy Practitioners:

• Lipedema Foundation’s Clinician’s Guide to Lipedema 
• Lipedema Foundation’s Overview of Treatment Options
• Lipedema Foundation’s Educational Videos & Media