Introduction

Dercum's disease, also termed adiposis dolorosa (ah-dih-POH-sis doh-luh-ROH-suh), is a rare condition where painful fatty tissue or lipomas form beneath the skin. These lipomas can be seen anywhere in the body and are often associated with chronic and, at times severe pain. Because this disease is not fully understood, and so far, there is no known cure, the treatment mainly focuses on pain relief and supporting daily activities.

Living with Dercum's disease can be very exhausting, as it is a perpetual fight to deal with not only the physical pain that limits mobility, but also with the emotional strain it places on the mental health of the individual. Standard painkillers may bring some kind of temporary relief, but sadly they're not a permanent solution. That is why this article will explore all the different ways in which pain can be managed in Dercum's disease, ranging from conventional analgesics to lifestyle changes and alternative therapies.

Understanding pain in dercum’s disease

This condition was first described by Francis Xavier Dercum in 1888. It is so rare that it is listed as a rare disease by both Orphanet and the National Organization of Rare Diseases (NORD).¹

Dercum’s disease is recently defined based on two minimally set criteria, which are chronic pain lasting for more than 3 months and generalized obesity or weight gain.² Patients suffering from this condition often describe the pain as a burning or aching sensation, which can be gradual in onset or spontaneous in nature. This pain is associated with subcutaneous adipose (fat) tissue growth, which may appear as generalized or localized nodule form. It mostly affects obese women of Caucasian origin, aged 35-50 years, or in general, postmenopausal women.³ Based on a clinical survey, the most painful locations are the upper arms, abdomen, buttocks, and thighs.²

A possible explanation for chronic pain is due to inflammation of the subcutaneous nodules, which causes peripheral nerve compression and ectopic neuronal activity (when nerve cells produce signals in the wrong place or in an abnormal pattern).³ Other proposed theories are due to endocrine dysfunction, adipose tissue dysregulation, genetic factors, autoimmunity, or trauma.⁴

Apart from chronic pain and obesity, other symptoms may include weakness, mental illness, metabolic dysfunction, sleeplessness, memory loss, and the tendency to bruise easily.³ Many people with Dercum’s have reported that the pain not only affects their movements but also has made doing daily activities a challenge. This constant struggle often leads to fatigue and sleep disturbances and is strongly linked to anxiety, depression, and mood disorders.⁵

Because the disease affects each patient differently, there is no universal treatment approach.¹ Instead, pain management plans are tailored to individual needs, supporting both the mind and body.

Conventional pain management therapies

There is currently no definitive cure for Dercum’s disease, and most of the case reports have mainly focused on managing pain, which often begins with standard pain-relieving medications and procedures. While these methods aren’t successful in eliminating the disease completely, they are helpful in making life much more manageable.⁴

Traditional analgesics, narcotics, and other medications

For mild cases, over-the-counter analgesics and NSAIDs (acetaminophen, ibuprofen) may provide some sort of short-term relief, though their effects are limited and long-term use carries risks.

For more severe pain, doctors may prescribe stronger analgesics such as narcotic opioids (morphine, methadone, and tramadol). These drugs can help many patients but carry a high risk of dependency and addiction, so they should be used cautiously.^2,6

Anticonvulsants such as pregabalin, gabapentin, and oxcarbazepine may help with neuropathic pain, while antidepressants may relieve anxiety and other mental illnesses.^2,6

Other drugs, such as methotrexate, infliximab, and interferon α-2b, have shown positive results in pain reduction for some patients, though the mechanism of action and its significance in pain management are not clear.⁴ However, these medications come with a lot of side effects and have benefitted very few.^7,8

Corticosteroids and injections

Corticosteroids such as prednisolone, given systemically, or intralesional injections like methylprednisolone, may help reduce the inflammation around painful lipomas and provide some sort of pain relief.

Lidocaine has shown significant benefit when delivered through topical applications (such as EMLA cream or 5% patches), intralesional injections, or intravenous infusions (Xylocaine). Reported relief can last anywhere from 10 hours to as long as 12 months. A much better outcome has been seen with the combined use of lidocaine and mexiletine, an antiarrhythmic drug.

Although these methods do not give permanent relief, they may offer a temporary break from the constant pain, enough to rest, regain energy, and manage daily activities with ease.²

Surgical options

Liposuction is a relatively common procedure that may provide longer lasting pain relief compared to conservative treatments. Most cases employ the dry suction technique, with a very few using the tumescence method with 0.1% pilocarpine solution.² It tends to be most effective for patients with diffuse disease rather than the nodular form.⁸ A 5-year follow-up revealed that while pain relief gradually diminished, patients still reported tolerable pain levels and slight improvement in the quality of life.⁹

Lipectomy or dermolipectomy is another intervention which involves surgical removal of painful lipomas. It is often used for larger nodular forms of the disease and can be effective in reducing pain in these cases.⁸

Surgery can improve pain and quality of life, but it also carries risks like high recurrence rate, nerve injury, and scarring. Because of this reason, it should be considered only for selected cases where other treatments are not effective.⁶ 

Newer treatment strategies

Researchers are constantly looking out for better treatment options, since conventional methods do not work for all patients. Although still experimental, several newer approaches have shown promise.

Transcutaneous electrical stimulation (TENS)

TENS uses low-voltage electrical currents sent through the skin to stimulate nerves. It works either by blocking pain signals or by triggering the body to release natural pain-reducing chemicals. 

FREMS (Frequency Rhythmic Electrical Modulated System) is an advanced form of TENS that uses a series of electrical impulses varying in frequency, duration and intensity. This noninvasive, drug-free therapy involves 4 cycles of 30 minutes duration done for a period of 6 months. Clinically it has shown a significant improvement in pain reduction for some patients.

MC5-A Calmare, another FDA-approved transcutaneous device used for chronic pain syndromes, is also being tested for Dercum’s disease. However, limited access, poor insurance coverage, and incomplete pain relief make it less favorable.⁴

Ketamine subanesthetic therapy

Ketamine infusions, often used for chronic pain syndromes, have been considered a last-line therapy in managing Dercum’s disease. Reported cases have shown improved pain scores, but unfortunately, it is associated with side effects such as hallucinations, confusion, and sedation. It is also important to note that very few patients have been treated with ketamine infusions so far, as standardized guidelines have only recently been proposed.^4,10

Prolotherapy

This technique involves injecting a dextrose solution into affected tissues to reduce inflammation around the nerves. It provides immediate pain relief, but multiple sessions are usually required for longer-lasting results. With very little published literature available, prolotherapy is considered an adjunct rather than a primary treatment.⁴

Hypobaric pressure therapy

This experimental therapy uses cycles of low-pressure air to relieve pain associated with edema seen in Dercum’s disease and also improve lymphatic flow. A small study involving 10 patients showed significant pain reduction using this therapy, which makes it a good non-pharmacological option. But more intensive studies are required to confirm these benefits and efficiency.²

Deoxycholic acid injection

In 2015, the FDA approved deoxycholic acid for the reduction of submental fat, which led to a 2019 trial study exploring its novel use in Dercum’s disease. The study showed pain reduction following intralesional injections, but further research is needed to confirm its safety, adequate dosing, and treatment schedule.⁹

Spinal cord stimulation

This therapy has shown promising results in reducing the burning pain of Dercum’s disease. It involves implanting a device on the spinal cord that sends low-voltage impulses to modulate pain signals. It is indeed not a cure, but it represents as the emerging option for patients with chronic pain. However, larger studies are needed to confirm its effectiveness.³

Alternate or complementary medicine

Because standard treatments have limitations and side effects, many people are exploring alternative therapies, which have shown potential benefits, even though evidence is limited and results often differ.

Acupuncture

Many people seek out acupuncture for chronic pain relief. So, a full-body acupuncture may help ease painful lipomas in Dercum’s disease, though evidence is less.⁴

Manual lymphatic massage

Gentle massage can improve swelling and lymphatic circulation. It has shown pain relief in cancer patients and may benefit those with Dercum’s disease, but should only be performed by trained persons to avoid worsening symptoms.⁴

Herbal remedies and diet

Anti-inflammatory foods such as lemon, barley, omega-3 fatty acids, and turmeric may help when taken with a diet rich in vegetables and antioxidants while limiting processed foods and sugar. However, it is best to take medical advice before starting any supplements.

Mind-body approaches

Biofeedback, hypnosis, and cognitive behavioral therapy (CBT) can help manage the stress, anxiety, and depression that are often seen with chronic pain.

While alternative therapies may reduce symptoms, lifestyle changes and support systems are both important in managing life with Dercum’s disease.

Living with Dercum’s disease

Besides medical treatments, daily adjustments play a key role in coping with Dercum’s disease:

• Seek medical advice from a pain specialist to find the best-suited therapy
• Use heat or cold packs to manage flare-ups
• Stay active with gentle exercise, stretching, or physiotherapy to maintain mobility
• Maintain a healthy weight with an anti-inflammatory diet
• Follow a regular sleep routine and prioritize adequate rest
• Plan daily activities by balancing work and rest to avoid overexertion
• Manage stress through relaxation practices such as yoga, meditation, or breathing exercises
• Protect mental health through counseling, therapy, or patient support groups
• Rely on family, friends, and rare disease communities for both emotional and practical support

Summary

Dercum's disease is a rare, painful, and poorly understood disease, which makes it difficult for patients to come to terms about living with it. Although no cure exists, pain can be managed in many ways to improve the quality of life. Pain-relieving medications, lidocaine injections and surgery are the first line of treatment. But researchers have also been looking for newer approaches such as FREMS, ketamine infusions, dextrose or deoxycholic acid injections, hyp0baric pressure therapy, and spinal cord stimulation. Though these methods are still in the experimental stage, they have brought hope to those who do not respond to the usual treatments. Living with Dercum's disease is not easy, but what really makes a difference is finding the right mix of combining medical care with lifestyle adjustments, asking for help when needed, safeguarding mental health, and finding the balance between activity and rest.