Dermatology/painful fat

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Question
what type of expert should i see?  First i would like to thank you for the time to answer my question. i don't have insurance so wasting money going to a doctor that won't help me is not an option. i have multiple painful lipomas all over. they range in size from a pea to a lemon. all have a burning pain. even wearing clothes is painful. my mother has the same problems. they started showing up about a year ago and have been increasing in pain, size, and number ever since. some of the lipomas even change in size in a few hours. i am unable to work now because of the pain. i have problems trying to sleep and doing any kind of house work. the pain has taken over my life. i also have depression, anxiety, fatigue, memory problems, joint pain, stiffness. i went to see a family physician a few months ago and he ordered lots of lab test that were all negative.  he said to see a surgeon and have them all removed but that would leave me with scars all over my body. and i don't have insurance to cover it. i am so miserable and don't know what to do.

Answer
Dercum disease - also known as Adiposis Dolorosa, Anders' syndrome and Dercum-Vitaut syndrome - is a rare condition that is characterized by multiple, painful fatty lipomas (benign, fatty tumors) that occur chiefly in post-menopausal, obese women of middle age. However, although it is 20 times more common in women, 16 percent of the reported cases are males and it can also occur in people who are not obese

The lipomas are located primarily on the trunk region and on the extremities close to the trunk. Unlike ordinary lipomas, there is also pain that can be severe and sometimes debilitating. Dercum disease is a chronic condition, meaning that it is a long lasting condition. In addition, it tends to be progressive.

What are the symptoms of Dercum disease?

This syndrome consists of four cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) weakness and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion and dementia.
The pain can last for hours, can be paroxysmal (occurring only at certain times) or continuous, and worsens with movement. Dercum disease is often associated with generalized weakness, depression, and irritability. The condition can also be associated with early congestive heart failure, myxedema (a condition associated with severe hypothyroidism), joint pain, paroxysmal flushing episodes, tremors, cyanosis (bluish discoloration of the skin), hypertension (high blood pressure), headaches, and epistaxis (nosebleeds).

What causes Dercum disease?

The understanding of the cause and mechanism of Dercum disease remains unknown. The origin of the pain is obscure, and the disease is better known as a description of its symptoms rather than as a physiologic or metabolic process. The fatty deposits (lipomas) cause nerve compression and result in weakness and pain.

Some cases reported in the literature have suggested possible causes for Dercum disease, such as the use of corticosteroids, a disturbance of endocrine function, or a genetic cause since it seems to run in some families. Some researchers have suggested that Dercum disease is an autoimmune disorder (a condition that occurs when the body's immune system attacks normal, healthy body tissue). However, no single cause has been pinpointed.


What do we know about heredity and Dercum disease?

Dercum disease has been reported to occur in families, and in some of these cases it seems to be inherited as an autosomal dominant trait (this means that one out of a person's two copies of the gene, inherited from one parent, is altered). However, most reported cases of this condition are sporadic (the only case to occur in the family).


What is the treatment for Dercum disease?

There is no "cure" for Dercum disease. At the present time, treatment for this condition is symptomatic, meaning that it focuses on one symptom at a time rather than the whole condition. Depending on the person, options can include weight reduction, surgery for the most painful lipomas, and medications to control pain. Liposuction has been used in some cases. You need to see a specialist that has treated this before. Medical school dermatology departments would be a good choice. The problem you will have is that surgical excision can be expensive.

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Michael S. Fisher, <B>Ph.D., M.D.</B>

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