How many people with this disease are estimated to live in the US? Are the lipomas constantly painful or does the pain come and go? What advice would you give to a patient regarding home treatment of symptoms?
How many people in the United States have adiposis dolorosa?
Adiposis dolorosa is rare and to our knowledge, the prevalence (in the United States or worldwide) has not been established. In the United States, a rare disease is generally considered to be a disease that affects fewer than 200,000 people.
The condition most commonly develops between the ages of 45 and 60 years. It is 20 times more common in females who are postmenopausal, obese, or overweight. It may occur in women younger than age 45, but is almost never seen in children.
Last updated: 10/20/2016
Do lipomas cause constant or intermittent pain in people with adiposis dolorosa?
Generally, the pain in adiposis dolorosa seems to be relatively constant over time. However, affected people have reported different types of experiences with pain. For example, in some people pain may last for hours and may come and go, while in others it may be constant. Some people only have some discomfort when a lipoma is touched or pressed; others may experience excruciating, severe, spontaneous attacks. Pain reportedly increases with an increase in fatty tissue and weight gain, and in connection to menstruation.
Last updated: 2/4/2016
Are there any home remedies for adiposis dolorosa?
We are not aware of home remedies known to alleviate the symptoms of adiposis dolorosa. A specialist in chronic pain may be able to provide strategies to help manage pain at home. There are some things that may worsen symptoms in some people, so avoiding them may be helpful in some cases. These include:
strenuous physical therapy
lack of sleep
physical and psychological stress
People with adiposis dolorosa who are considering making any lifestyle or dietary changes should first consult with their healthcare provider.
Last updated: 6/28/2016
How might adiposis dolorosa be treated?
Management of adiposis dolorosa is difficult. No treatments that are currently available have led to long-lasting, complete pain reduction. Surgical removal of particularly burdensome lesions and/or liposuction may be helpful for some people. However, lipomas have been known to reoccur and even increase in number at the same site or a nearby location. Weight reduction may help with joint pain in some individuals, but has proven to be difficult to achieve and generally doesn't offer significant relief of symptoms.
There is currently no drug known to change the course of the disease. Available medications mainly focus on alleviating symptoms and may include:
prednisone or intravenous lidocaine for pain
traditional pain medicines such nonsteroidal anti-inflammatory drugs (which are often ineffective), or acetaminophen combined with an opioid analgesic
a cortisone/anesthetic injection for localized pain