ConditionSkin, hair & nails
Dercum Disease (Adiposis Dolorosa)
Dercum disease, also called adiposis dolorosa, is a rare chronic condition in which painful fatty tissue or multiple painful lipomas (soft fatty lumps) grow under the skin. It mostly affects women between ages 35 and 50, often with overweight or obesity. The pain can be severe and is often accompanied by fatigue, poor sleep, memory problems and depression. The cause is unknown and there is no cure, but pain treatments, lidocaine, liposuction or removal of troublesome lumps, and support can improve quality of life.
Also called: Adiposis dolorosa, Anders syndrome, painful fat syndrome, Dercum's disease
At a glance
- What it is
- Chronic pain in fatty tissue or in multiple lipomas.
- Who gets it
- Mainly women aged 35 to 50; many times more common in women than men.
- Key features
- Painful lumps or fat on the trunk, arms and thighs; fatigue; sleep and memory problems.
- Cause
- Unknown; possible nerve, inflammatory, hormonal or genetic factors.
- Diagnosis
- Clinical, after ruling out other causes of painful lumps and pain.
- Treatment
- Pain medicines, lidocaine, liposuction or lump removal, physical therapy and psychological support.
When to get help
See a doctor within a day or two
- A lump that is growing quickly, hard, fixed in place, or larger than about 5 cm (2 inches)
- A lump with overlying skin changes, bleeding or ulceration
Book a routine appointment
- Multiple soft lumps under the skin that are tender or painful
- Painful fatty areas with fatigue, poor sleep or low mood
- Pain from lumps that limits daily activity or work
- Increasing number of lumps, or a family history of multiple lipomas
What Dercum disease is
Normal lipomas are soft, movable fatty lumps that are usually painless. In Dercum disease, fatty tissue is painful, often intensely, and many lipomas may develop over time. The pain is out of proportion to the size of the lumps and may be burning, aching, stabbing or tender to light touch. It can be constant or come in flares.
Symptoms
- multiple painful lipomas or painful areas of fat, most often on the trunk, upper arms, thighs, buttocks and around the knees
- pain that may be worse with pressure, movement or weight changes
- generalized overweight or obesity in most people
- fatigue and weakness
- sleep disturbance
- difficulty with concentration and memory
- depression and anxiety
- joint pain
- easy bruising
- swelling in affected areas
Hands, feet and face are usually spared.
Types
Doctors have described four patterns:
| Type | Description |
|---|---|
| Generalized diffuse | Widespread painful fat without distinct lumps |
| Generalized nodular | Widespread pain plus many painful lipomas |
| Localized nodular | Pain mainly in and around lipomas |
| Juxta-articular | Painful fat deposits near joints, especially the inner knee |
Causes
The cause is not known. Proposed explanations include:
- abnormal nerve function or nerve compression within fatty tissue
- low-grade inflammation in fat
- hormonal and metabolic factors, given the predominance in women around menopause
- genetic factors: some families show an autosomal dominant pattern
Dercum disease vs related conditions
| Dercum disease | Lipedema | Multiple lipomas | Madelung disease | |
|---|---|---|---|---|
| Who | Mostly women 35 to 50 | Women, starting at puberty or pregnancy | Any adult | Mostly men with heavy alcohol use |
| Distribution | Trunk, arms, thighs; spares hands and feet | Symmetrical legs and sometimes arms; spares feet | Anywhere | Neck, shoulders, upper back |
| Pain | Prominent, often severe | Tender, bruise easily | Usually painless | Usually painless |
| Lumps | Lipomas or diffuse fat | Diffuse fat, nodules | Distinct lipomas | Large symmetrical fat masses |
See lipedema, lipoma and Madelung disease.
Diagnosis
There is no specific test. Dercum disease is diagnosed when someone has chronic pain (lasting more than 3 months) in fatty tissue or lipomas, usually with overweight, after other causes are excluded. Your doctor will examine the lumps and ask about pain, fatigue, mood and family history. Tests may include:
- ultrasound or MRI to confirm lumps are fatty and rule out other masses
- biopsy of an unusual lump to exclude liposarcoma or other tumors
- blood tests to rule out inflammatory, thyroid or metabolic causes of pain
- assessment for fibromyalgia, which can coexist and overlap in symptoms
Treatment
No treatment cures Dercum disease. Care focuses on pain relief and function, often through a pain clinic or multidisciplinary team.
Pain relief
- Simple pain relievers and NSAIDs: often only partly effective.
- Nerve pain medicines such as pregabalin or duloxetine.
- Lidocaine: patches over painful areas, or intravenous infusions in specialist settings, can relieve pain for days to months in some people.
- Other options tried by specialists include corticosteroid injections and low-dose naltrexone; evidence is limited.
Procedures
- Surgical removal of particularly painful lipomas; new ones may develop.
- Liposuction: can reduce pain and fat volume in some people, although pain may return over time.
Supportive therapies
- physical therapy, gentle exercise and aquatic therapy
- manual lymphatic drainage and compression in some people
- psychological support, CBT and treatment of depression
- sleep management
- a balanced diet and gradual weight management; weight loss does not usually resolve the pain but improves general health
Outlook
Dercum disease is chronic and often progressive, but it is not life-threatening and does not turn into cancer. Pain severity varies over time. Many people find a combination of treatments that makes symptoms manageable. Connecting with rare disease support groups can reduce isolation.
Frequently asked questions
What is Dercum disease?
Dercum disease, or adiposis dolorosa, is a rare chronic condition causing painful fatty tissue or many painful lipomas under the skin. It mainly affects middle-aged women and is often accompanied by fatigue, sleep problems, memory difficulties and low mood.
What causes Dercum disease?
The cause is unknown. Researchers suspect a combination of nerve abnormalities, inflammation in fatty tissue, hormonal and metabolic factors, and genetics, since it sometimes runs in families.
How is Dercum disease different from lipedema?
Lipedema causes symmetrical fat build-up in the legs and sometimes arms, starting around puberty, sparing the feet. Dercum disease causes painful lipomas or fatty areas, mostly on the trunk, arms and thighs, usually in middle age. Both can be painful and can coexist.
Is there a cure for Dercum disease?
There is no cure. Treatments aim to control pain and improve daily function, including nerve pain medicines, lidocaine patches or infusions, removal of painful lumps, liposuction, physical therapy and psychological support.
Are the lumps in Dercum disease cancerous?
No. The lumps are benign lipomas or fatty tissue. However, any lump that grows quickly, becomes hard or fixed, or is very large should be examined, and sometimes imaged or biopsied, to rule out other causes.
Sources
This guide was written from current patient and clinical guidance, including:
- NIH Genetic and Rare Diseases Information Center (GARD): Dercum disease
- National Organization for Rare Disorders (NORD): Dercum disease
- Orphanet Journal of Rare Diseases: Dercum's disease (adiposis dolorosa), a review of clinical presentation and management
- MedlinePlus: Lipomas
- DermNet: Adiposis dolorosa