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Weight Loss And Metabolic Management In Patients With Dercum’s Disease


I. Introduction

Dercum’s Disease (adiposis dolorosa) is a rare disorder with painful fatty growth under the skin, affecting under 200,000 individual in United States, a rare disease under the Orphan Drug Act.¹


Patients often struggle with painful fatty growth, fatigue, obesity, and mental issues (instability, depression, epilepsy, confusion, dementia).² 


Weight management is crucial in Dercum’s disease, but traditional methods are often ineffective due to lipomas. Metabolic control and weight management are vital for pain reduction, preventing complications, and improving quality of life.


This article discusses weight loss and metabolic management in Dercum’s disease patients, including diet, exercise, psychological support, and new therapies.



II. Pathophysiology of Dercum’s Disease


Dercum’s disease is clinically recognized but its physiology isn't fully understood.

Fatty growths (Lipomas) cause pain by compressing nerves.


Unconfirmed factors: 

Corticosteroid therapy, endocrine issues, genetics, and autoimmunity are suggested but unconfirmed.


Adipose findings: 

No abnormality found; inflammation and sympathetic nervous system may be involved.


Genetics: 

Family history shows inheritance is possible, but most cases are random.


Mitochondrial mutation: 

8344A→G mutation, linked to MERRF, absent in Dercum’s disease, but seen in fat overgrowth (lipomatosis)  without muscle issues.


Lymphatic role: 

In 2015, NIRF imaging showed unusual lymphatic vessels in patients, suggesting a lymphovascular cause.² ³



III. Challenges of Weight Loss in Dercum’s Disease


Dercum’s disease (adiposis dolorosa) weight loss is difficult. Unlike typical obesity, abnormal fatty tissue in this rare disorder resists traditional weight management.

The following challenges have been identified:


1. Pain Limiting Physical Activity


Dercum’s disease involves painful fatty growth under the skin (lipomas) causing chronic pain, hindering exercise.

Pain can increase with stress, exercise, trauma, or weather changes.

Fatigue reduces patients’ activity levels.⁴


2. Emotional Distress and Stress Eating


Dercum’s disease has psychological symptoms like depression, anxiety, and emotional eating due to slow weight loss.

These emotional issues hinder weight management.⁴


3. Resistance of Lipomas to Standard Fat Reduction


In Dercum’s disease, subcutaneous adipose tissue (SAT) is resistant to diet and exercise.

Normal subcutaneous adipose tissue (SAT) can be lost with lifestyle changes, unlike Dercum’s disease SAT.⁴


Rare adipose disorders (RADs) patients cannot lose abnormal fat via caloric restriction or increased activity.

Even Bariatric surgery may not reduce lipomas without comprehensive care.⁴


4. Slow Progress Compared to Typical Obesity


Abnormal fat is difficult to lose, making it hard to improve symptoms or appearance even with weight loss.

Patients experience slower progress than those with typical obesity.

Discouragement worsens psychological distress.⁴



IV. Weight Loss Strategies


Dercum’s disease fat is hard to lose even with lifestyle changes, medicine, or surgery, due to tissue fibrosis. Fibrosis around fat cells increases metabolic disease risk and hinders fat loss efforts.⁴


Dercum's disease involves a mix of normal and persistent fat, requiring specific care approaches as persistent fat resists diet and exercise. Currently, no targeted weight loss strategies effectively reduce abnormal fat in Dercum’s disease, so management focuses on controlling related metabolic issues like obesity and diabetes.⁴ ⁵


Dietary Approaches :

Anti-inflammatory diet (Mediterranean, less processed foods).

Control calories with nutrient-dense foods.

Adequate protein preserves muscle.

Limit refined sugars and processed fats.⁶ ⁷ ⁸


Physical Activity :

Low-impact exercises: swimming, cycling, walking.

Physical therapy helps mobility.

Stretching reduces stiffness.⁹ ¹⁰


Behavioral and Psychological Support :

Cognitive Behavioral Therapy (CBT) helps in managing stress and regulating eating habits.

Support groups aid those with chronic pain and rare diseases.

Sleep hygiene improves metabolism.¹¹ ¹² ¹³


V. Metabolic Management


1. Monitoring and Managing Related Health Issues


Blood glucose levels: 

Monitor blood glucose to prevent diabetes, as Dercum’s disease may cause hyperinsulinemia and glucose intolerance.¹⁴ ¹⁵


Lipid profile: Check cholesterol and triglyceride levels as dyslipidemia, including hypercholesterolemia, is sometimes observed.¹⁴ ¹⁶


Blood pressure control: 

Normal BP is key, as Dercum’s disease has been linked to hypertensive emergencies and angina.¹⁷



2. Role of Pain Management in Improving Metabolic Outcomes


Pain control methods: 


Dercum’s disease pain is severe. 

Pain relief options include analgesics, corticosteroid injections (high doses may link to onset), and intravenous lidocaine or ketamine. Liposuction and lipoma excision offer temporary pain reduction and functional gains, but results fade, and surgery may cause new lipomas. Psychotherapy and pain management aid coping with chronic pain.¹⁸



Impact on physical activity: 


Effective pain management aids mobility and activity. Increased activity helps manage comorbidities like diabetes and dyslipidemia, though Dercum’s fat is often resistant to lifestyle changes.




VI. Emerging and Supportive Therapies in Dercum’s Disease


Liposuction or surgical excision: 

Lipomas may be temporarily reduced, improving quality of life, but benefits decrease and surgery may cause new lipoma growth.¹⁸


Lymphatic drainage and massage: 

Manual lymphatic drainage may reduce pain and weight.¹⁸


Experimental approaches: 

Lidocaine/ketamine offer temporary pain relief; interferon alfa-2b helped some; CBL-514 trials are ongoing.¹⁸



Complementary therapies: 

Acupuncture, hypnosis, biofeedback, and cognitive behavioral therapy may help as an supportive therapy.¹⁸



Psychological and pain management support: 

Psychotherapy and pain specialists can help manage patients chronic pain.¹⁸


Personalized medicine: 

Personalized treatments may improve Dercum’s disease outcomes.




VII. Patient Education and Long-Term Care 


Setting realistic goals: 

Prioritize pain relief, better life quality, and symptom control, not just weight loss.


Multidisciplinary care team: 

Dercum’s disease needs long-term care from doctors, dietitians, physiotherapists, and psychologists.


Tracking progress: 

Trackable small milestones keep Dercum’s patients motivated.


Self-management strategies: 

Lifestyle changes, coping skills, and patient engagement aid long-term care.


VIII. Summary

In Dercum’s disease, painful fatty growths under the skin hinder weight loss and metabolic control.The abnormal fat resists traditional methods(like diet, exercise, and surgery), and pain and stress hinder progress.Care involves pain management, addressing related health issues, and enhancing life quality via multidisciplinary team support.More research is needed for targeted treatments and better outcomes for patients with this rare disorder.



FAQs

Q: What is the cause of Dercum's disease?

Lipomas (fatty deposits) cause nerve compression, resulting in pain and weakness. Some studies suggest potential causes of Dercum disease include corticosteroid use, endocrine issues, or genetic factors.²



Q: What age do people get Dercum's disease?


Dercum disease's prevalence is unknown, but it's seen in people aged 45-60, often women younger than 45.  A patient survey found 85% developed Dercum disease symptoms before menopause.³


Q: How painful is Dercum's disease?


Dercum's disease causes significant pain in adipose tissue. The pain is burning and searing.¹⁹



Q: What is the triad of Dercums disease?


Dercum disease diagnosis involves physical exam and identifying characteristic triad features (multiple lipomas, painful plaques, and obesity).²⁰



Q: How do you diagnose Dercums disease?


Painful lipomas, especially in overweight individuals, are found via physical exam.  No lab tests are linked to Dercum disease.²¹



Q: Can you see Dercums disease with an MRI?


Ultrasonography & MRI may help diagnose Dercum disease.  MRI shows oblong lesions, possibly due to septal distortion.³



Q: How do you treat Dercum's disease?


Electrocutaneous stimulation, perineural injection therapy (PIT)/prolotherapy, and intralesional deoxycholic acid (DCA) may treat Dercum disease pain.³



Q: What is the new treatment for dercums disease?


CBL-514 injection reduces fat by causing adipocyte apoptosis.²²




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