What is Dercum’s Disease?
Adiposis dolorosa, also known as Dercum’s disease, is a rare disease that causes painful growths of fatty tissue called lipomas. The lipomas are often found on the back side, the stomach, the upper arms, and the upper legs. These lipomas, or adipose tissues, can sit on nerves and cause a lot of pain or even impair movement. This disease is typically associated with obesity and fatigue. Those between the ages of 35-50 are more likely to have the painful disease and it is more common among women than men, according to the Orphanet Journal of Rare Diseases.
The cause of this rare disease is unknown. Some medical professionals believe it may be an autoimmune disease and is a result of the immune system attacking healthy tissues. Others believe it’s due to a mutated fat gene that’s hereditary. There’s also a group of medical professionals that believe it could be due to a metabolic problem where the body doesn’t properly break down fat. It’s hard for medical professionals to pinpoint an exact cause because symptoms occur spontaneously and for no apparent reason.
Symptoms of Dercum’s Disease
While the symptoms of Dercum’s disease vary from person to person, the main characteristic is painful lipomas. The pain itself also varies, but is most severe when the lipomas are pressing on nerves. Other symptoms may include:
- weakness
- easy bruising
- weight gain
- fatigue
- difficulty sleeping
- shortness of breath
- anxiety
- difficulty concentrating, focusing, or recalling memories
- stiffness after laying down
- headaches
- rapid heart rate
- joint pain
Some may experience other types of symptoms such as abdominal bloating, seizures, and skin infections. However, these symptoms are less common than the ones listed above.
Types of Adiposis Dolorosa
Adiposis dolorosa is broken into four types: generalized diffuse form, generalized nodular form, localized nodular form, and juxta-articular form.
- Generalized diffuse form: this type of adiposis dolorosa is characterized by the widespread adipose tissue that is painful, but doesn’t present itself in the form of lipomas.
- Generalized nodular form: this type is similar to the generalized diffuse form, but with the presence of lipomas.
- Localized nodular form: this form is characterized by the pain that is isolated to areas within and around lipomas. This type is also known as lipomatosis.
- Juxta-articular form: this type typically forms around the joints inside the knees, hips, or upper arms. Sometimes it can affect all of the joints.
Diagnosis of each type of adiposis dolorosa is determined through a clinical evaluation and is often discovered by ruling out other conditions such as lipedema and fibromyalgia. If fatty tissue is found, the doctor will conduct a biopsy to confirm that they are lipomas.
Treatments for Dercum’s Disease
Treatment for this rare disease focuses on easing symptoms. There isn’t one specific treatment that seems to be standard for each individual and there isn’t a cure. Instead, doctors will try to find treatments that mainly focus on pain management. These treatments include:
- Medicine: this is typically the treatment that doctors try first since medication can address multiple symptoms at once. Some medications that doctors may try includes methotrexate, lidocaine, and other anti-inflammatory medicines.
- Surgical removal of the fatty tissues: this treatment becomes an option when the individual has lipomas. Surgeries that target the removal of fat, such as liposuction, can really help with quality of life since doctors are removing the source of the pain.
- Weight loss: this treatment may help those without lipomas or those who have had lipomas removed. Since this rare disease is associated with obesity, doing low-impact exercises could help with easing tension in the joints and improving mobility.
There are alternative treatments that could help ease pain such as acupuncture and electrotherapy. There’s also a treatment that is currently being researched to treat symptoms of Dercum’s disease called interferon alfa-2b. This may or may not be an option depending on the individual’s doctor’s recommendations.
Regardless of which treatment doctors choose to use to help ease symptoms, it’s important for individuals suffering from this chronic condition to seek emotional support. Support can come from friends, family, or a mental health professional. Having a support system is beneficial to the individual’s mental well-being, but it also helps people feel less alone.
