What is Dercum’s disease?
Dercum’s disease, sometimes called adiposis dolorosa, is a rare disorder that causes painful growths of fatty tissue called lipomas. It usually affects the torso, upper arms, or upper legs.
According to a review in the Orphanet Journal of Rare Diseases, Dercum’s disease is anywhere from 5 to 30 times more common in women. This lack of agreement about how common it is in women is an indication that Dercum’s disease isn’t well understood. Despite this lack of knowledge, there’s no evidence that Dercum’s disease affects your life expectancy.
What are the symptoms?
The symptoms of Dercum’s disease can vary from person to person. However, almost all people with Dercum’s disease have painful lipomas that grow slowly. Lipoma size can range from that of a small marble to a human fist. For some people, the lipomas are all the same size, while others have several sizes.
Lipomas associated with Dercum’s disease are often painful when pressed, possibly because they’re pressing on a nerve. For some people, the pain is constant.
Other symptoms of Dercum’s disease may include:
- weight gain
- swelling that comes and goes in different parts of the body, often the hands
- problems with thinking, concentration, or memory
- easy bruising
- stiffness after laying down, especially in the morning
- difficulty sleeping
What causes it?
Doctors aren’t sure what causes Dercum’s disease. In most cases, there doesn’t seem to be an underlying cause.
Some researchers think it may by an autoimmune disorder, which is a condition that causes your immune system to mistakenly attack healthy tissue. Others believe it’s a metabolic problem related to not being able to properly break down fat.
How is it diagnosed?
There’s no standard criteria for diagnosing Dercum’s disease. Instead, your doctor will likely focus on ruling out other possible conditions, such as fibromyalgia or lipedema. To do this, your doctor might biopsy one of your lipomas. This involves taking a small tissue sample and looking at it under a microscope. They may also use a CT scan or MRI scan to help them make a diagnosis.
If you’re diagnosed with Dercum’s disease, your doctor may classify it based on the size and location of your lipomas. These classifications include:
- nodular: large lipomas, usually around your arms, back, abdomen, or thighs
- diffuse: widespread small lipomas
- mixed: a combination of both large and small lipomas
How is it treated?
There’s no cure for Dercum’s disease. Instead, treatment usually focuses on pain management using:
- prescription pain relievers
- cortisone injections
- surgical removal of lipomas
- intravenous lidocaine
- nonsteroidal anti-inflammatory drugs
- anti-inflammatory diets
In most cases, people with Dercum’s disease benefit the most from a combination of these treatments. Consider working with a pain management specialist to find the safest combination that’s most effective for you.
Living with Dercum’s disease
Dercum’s disease can be hard to diagnose and treat. Chronic, severe pain can also lead to problems such as depression and addiction. If you have Dercum’s disease, consider working with a pain management specialist as well as a mental health professional for added support. You might also find an online or in-person support group for people with rare diseases.