Dercum’s Disease (Adiposis Dolorosa)

Dercum’s Disease is best classified as a syndrome of painful growths of subcutaneous fat called ‘lipomas’.

These growths can appear throughout the body, causing persistent discomfort, fatigue, and mobility challenges. Often misunderstood or misdiagnosed, Dercum’s Disease significantly impacts quality of life, making daily activities difficult and diminishing overall well-being.

At Total Lipedema Care, Dr. Jaime Schwartz MD FACS specializes in accurately identifying and compassionately treating rare adipose disorders, including Dercum’s Disease.

Utilizing advanced diagnostic methods, Dr. Schwartz carefully maps out personalized treatment plans for patients, designed to relieve pain, reduce fatty growths, and significantly improve their day-to-day comfort.

WHAT IS DERCUM’S DISEASE?

Dercum’s disease is one of the subcutaneous adipose tissue diseases, a rare disorder characterized by multiple painful growths of fatty tissue (lipomas) under the skin.

In patients with Dercum’s disease, also known as adiposis dolorosa, benign tumors made of adipose tissue (body fat) form in the subcutaneous tissue and cause chronic, severe pain. The condition was first described in 1892 by Dr. Francis Dercum, who coined the term “adiposis dolorosa,” Latin for painful fat, to describe the hallmark symptom of painful fatty deposits.

This is a rare disease often misunderstood and misdiagnosed. It predominantly affects women in mid-adulthood and is frequently associated with being overweight or obese.

Because of its rarity and the fact that most typical lipomas are painless, patients with Dercum’s disease may struggle for years to get a proper diagnosis. The chronic pain from these fatty growths can be debilitating, but understanding the condition and seeking expert care is the first step toward relief.

The precise cause of Dercum’s disease remains unknown.

Research is ongoing, but as of now, Dercum’s is considered an idiopathic condition, meaning it has no single identified cause. However, several theories have been proposed regarding its development and what might trigger those painful fatty growths:

• Autoimmune Factors – Some researchers suspect Dercum’s disease may be an autoimmune disorder, in which the immune system might mistakenly attack the body’s own fat tissue or trigger inflammation in fatty areas.
• Defect in Fat Metabolism – Another theory is a fundamental problem in lipid (fat) metabolism or adipose tissue function. Essentially, the body might improperly store or break down fat, leading to local accumulations of painful fat deposits.
• Nervous System Dysfunction – There may be a component of nervous system dysregulation. One idea is that the autonomic nervous system, which controls things like pain signals, heart rate, and other unconscious functions, might be out of balance in Dercum’s.
• Mechanical Pressure and Compression – It has been suggested that as the adipose tissue accumulates in lipomas, it could press on nearby nerves, causing pain. In other words, the growth of fatty tumors might entrap or compress small nerve fibers in the skin and fat, leading to chronic pain signals.
• Inflammation and Lymphatic Dysfunction – Emerging research indicates there are inflammatory changes in the fat of Dercum’s patients, and the lymphatic system, which helps drain fluid and immune cells, may be impaired.
• Trauma or Infections as Triggers – There are reports of Dercum’s disease developing after a physical trauma or injury to the body, such as after a surgery or accident, leading to the term trauma-induced adiposis dolorosa in some cases.

Given these possibilities, it’s likely that Dercum’s disease is multifactorial, meaning a combination of genetic predisposition, immune system behavior, and environmental triggers like trauma, infection, or hormonal changes could all contribute to its development.

Genetics and Familial Cases

Most cases of Dercum’s disease are sporadic, occurring in people with no family history of the condition. However, there have been rare reports of it running in families.

Some familial cases suggest an autosomal dominant inheritance with incomplete penetrance: In simpler terms, a parent with the condition might pass on a tendency to develop it, but not all relatives who inherit that tendency will actually get sick. No specific gene has been pinpointed yet, and part of the difficulty in confirming familial transmission is distinguishing Dercum’s from other hereditary multiple lipoma conditions, like familial multiple lipomatosis.

Familial Multiple Lipomatosis is a genetic condition where people develop numerous lipomas, but unlike Dercum’s, those lipomas are typically not painful. A family might appear to have “Dercum’s” if multiple members have lots of lipomas, but if those aren’t painful, it’s a different diagnosis..

Risk Factors

While anyone can theoretically develop Dercum’s disease, certain factors are associated with higher likelihood:

• Sex (Female Predominance) – Dercum’s overwhelmingly affects women. Studies estimate that it is about 5–30 times more common in women than in men. Most women who develop it are adult women.
• Age – The typical age of onset is between 35 and 50 years. Dercum’s is uncommon in young adults and rare in children.
• Weight – The majority of Dercum’s patients have a Body Mass Index classified as overweight or obese. This is so common that earlier definitions of the disease included obesity as a characteristic part of it. It’s not clear whether excess weight is a contributing cause or a result.
• Other Health Conditions – Some patients with Dercum’s also have other disorders, though these associations are not fully understood. Conditions noted alongside Dercum’s include: autoimmune diseases (like rheumatoid arthritis or lupus in a few cases), hypothyroidism (underactive thyroid), diabetes, and sometimes chronic hepatitis C infection.
• Injury or Surgery – A history of significant injury, surgery, or physical trauma affecting fatty areas has been noted in some patients prior to the onset of Dercum’s disease. For example, a patient may notice their first painful lipoma at the site of a past injury or surgical scar.

It’s worth emphasizing that Dercum’s disease is rare.

Just because someone has these risk factors (e.g. a middle-aged woman with obesity and fatigue) does not mean they have Dercum’s. More common conditions could explain their symptoms.

There is currently no cure for Dercum’s disease, but there are numerous treatment approaches aimed at managing symptoms, reducing pain and improving quality of life.

Often, patients will need a combination of therapies, a comprehensive pain management strategy, tailored to their specific symptoms and the severity of their condition. It may take some trial and error to find the most effective regimen, and what works for one patient may not work for another.

Ideally, care is managed by a multidisciplinary team (pain specialists, surgeons, endocrinologists, physiotherapists, etc.) or a physician experienced in treating fat disorders.

Lifestyle and Supportive Measures

• Weight Management – While losing weight does not cure Dercum’s disease or make the lipomas disappear, maintaining a healthy weight can reduce overall inflammation and stress on the body. Gradual weight loss in an overweight patient might help lessen pain in weight-bearing joints and improve mobility. Some patients note mild improvement in pain with weight loss, though the condition itself persists. A nutritionist can help tailor an anti-inflammatory diet (for example, a diet rich in vegetables, omega-3 fatty acids, and low in processed sugars) which may support weight loss and possibly reduce pain flare-ups.
• Low-Impact Exercise – Regular gentle exercise is encouraged to the extent tolerated. Activities like swimming, water aerobics, yoga, stretching, or walking in short durations can help keep circulation moving and prevent muscle atrophy without putting excessive strain on painful areas. Exercise can also boost mood and energy. It’s important to start slow and listen to your body.
• Manual Lymphatic Drainage (MLD) Therapy – Given the lymphatic issues noted in Dercum’s, manual lymphatic drainage, a specialized light massage technique that helps move lymph fluid, has been used to reduce swelling and discomfort in patients. MLD, commonly used in lipedema and lymphedema, may help Dercum’s patients by decreasing fluid buildup in tissues and potentially flushing out inflammatory mediators. Compression garments might also be recommended in certain areas to prevent fluid accumulation, though they must be used carefully since tight compression could provoke pain if a lipoma is very tender.
• Psychological Support and Pain Coping Strategies – As discussed, addressing mental health is a key component of treatment. Cognitive-behavioral therapy (CBT) and other counseling techniques can help patients develop coping strategies for chronic pain. In some cases, psychiatrists may prescribe medications like antidepressants or anti-anxiety medications not only to treat mood but also because certain ones (like SNRIs or tricyclic antidepressants) have pain-relieving properties in chronic pain syndromes.
• Pain Self-Management Tools – Patients often use various at-home methods for symptomatic relief. These include warm baths or heating pads (heat can soothe aching areas), cold packs (numbing effect on sharper pains), transcutaneous electrical nerve stimulation (TENS units, which send mild electrical pulses through the skin to interfere with pain signaling), and acupuncture. Acupuncture, in particular, has anecdotal support; some patients feel it decreases pain and stress when done regularly, though scientific evidence is limited..

Medications and Injections

Medical management aims to reduce pain and inflammation associated with Dercum’s disease. This often requires a multi-pronged pharmacological approach:

• Analgesics (Pain Relievers) –Over-the-counter pain relievers like acetaminophen (Tylenol) or NSAIDs (nonsteroidal anti-inflammatory drugs such as ibuprofen or naproxen) may provide mild relief. However, Dercum’s pain is often severe enough that these alone are insufficient. In more intense pain episodes, doctors might prescribe stronger pain medications. Short courses of opioids or opioid-like medications could be used for acute flare-ups, but due to risks of dependency and side effects, they are not a long-term solution and are used cautiously.
• Antidepressants and Neuropathic Pain Medications – Certain antidepressants (like duloxetine or amitriptyline) and anti-seizure medications (like pregabalin or gabapentin) are commonly used in chronic pain syndromes. These drugs work on the nervous system to decrease pain signaling and can be especially helpful for nerve-related pain or fibromyalgia-like pain.
• Corticosteroids – Cortisone can have powerful anti-inflammatory effects. In Dercum’s, steroids might be used in a couple of ways. One is intralesional corticosteroid injections, injecting a small amount of steroid (and often a bit of anesthetic) directly into a particularly painful lipoma or fatty area. This can sometimes shrink the lipoma and reduce local inflammation, providing temporary relief in that spot.
• Lidocaine (Local Anesthetic) – Lidocaine is an anesthetic that can numb pain, and it’s utilized in Dercum’s disease in several forms. Topical lidocaine patches or creams can be applied on painful areas to dull the sensation. For more pronounced relief, doctors may perform intralesional lidocaine injections: injecting lidocaine into or around painful lipomas, similar to how a dentist numbs a tooth area. This can give short-term relief for that area and can be repeated as needed. Importantly, some patients with widespread pain have undergone intravenous lidocaine infusions. In a monitored medical setting, an IV of lidocaine can be given systemically.

In managing Dercum’s disease medically, the phrase “pain management” is key.

Often a pain management specialist, often an anesthesiologist or neurologist with specialization in pain medicine, will be involved to tailor the medication regimen, especially if opioid painkillers or infusions are used. The goal is to bring pain down to a level where the patient can function better and engage in therapies like exercise which further improve overall condition.

It’s also about improving sleep and mood, which in turn help control pain: a holistic cycle of care.

Surgical and Procedural Interventions

For some patients, especially those with prominent lipomas (nodular type), surgical approaches can provide relief.

However, it’s important to understand that surgery addresses the effects of Dercum’s (removing a lipoma) but does not cure the underlying tendency to form painful fat. New lipomas can develop even after others are removed, so surgical intervention is usually reserved for specific cases and often combined with other treatments. Here are the main options:

• Liposuction – Liposuction is a procedure that removes fat through suction cannulas, typically used cosmetically to shape body contours. In Dercum’s disease, specialized liposuction techniques (often tumescent liposuction, possibly lymphatic-sparing lipo) can remove a large volume of fatty tissue from affected areas. This can significantly reduce the number of painful lipomas and the bulk of painful fat, especially in diffuse or mixed types. Patients with Dercum’s and lipedema overlap, for instance, might benefit greatly from liposuction on the legs or arms. Liposuction has been reported as an effective but sometimes temporary treatment. Many patients experience a big improvement in pain initially, but some pain can gradually return over months or years as remaining fat tissue might become painful or new nodules form. Still, it can provide a window of relief and improved mobility. Total Lipedema Care (TLC) and Dr. Jaime Schwartz MD FACS, for example, utilize advanced liposuction techniques to carefully remove diseased fat while minimizing trauma to lymphatic vessels, which is crucial in conditions like Dercum’s where lymphatics may already be compromised.
• Excision of Lipomas – For individual large lipomas that are extremely painful, surgical excision (cutting out the lump) is a direct approach. A surgeon (often a plastic surgeon) will make an incision over the lipoma, remove it, and close the area with sutures. This is typically done for lipomas that are causing localized pain or nerve compression. Excision can provide permanent relief for that specific lump – it will not grow back – but it does create a scar and only addresses that spot. If a patient has dozens of lipomas, excising all is not practical, but targeting the worst ones can be worthwhile. There are also minimal-incision excision techniques where a very small incision is made and the lipoma is removed in pieces with a special instrument, to reduce scarring. This can be useful when multiple lipomas are removed in one session.
• Nerve Blocks and Neurostimulation – In cases of severe chronic pain, pain management doctors might consider procedures aimed at nerve pathways. For example, a nerve block involves injecting an anesthetic near certain nerves to block pain signals from a region. If a particular nerve plexus is suspected to transmit a lot of the pain, a block might give temporary relief and can be repeated.

Combining Treatments

In practice, a patient with Dercum’s disease will often use several of the above options in tandem.

For instance, a comprehensive plan might be: lifestyle changes (diet, gentle exercise), plus an SSRI antidepressant for mood and some pain relief, plus NSAIDs as needed, plus weekly manual lymphatic drainage and periodic cortisone injections for flares, plus liposuction on the most affected area, and perhaps occasional corticosteroid injections for any new painful lipoma that pops up.

It really is about management, not one-time treatment.

Patients are encouraged to work closely with their healthcare providers, report what’s working or not, and adjust the plan accordingly. The overarching goals are to reduce pain, improve function and mobility, and enhance quality of life. With persistence, many patients do achieve meaningful relief – maybe not 100% pain-free, but enough improvement to regain activities and joy that the disease had taken away.

Helping patients worldwide live pain-free!  Patients travel from all over the U.S. and abroad to receive care from Total Lipedema’s team of leading experts who are known for offering the most advanced and effective Dercum’s Disease treatments.