Disease Information for Adiposis dolorosa (Dercum)

A rare disease, believed to be autosomal dominant, manifested by fatty deposits that press on nerves causing weakness and pain-------------------Dercum’s disease is a progressive disorder that causes the growth of painful adipose (fat) tissue; The painful fat can be in distinct lumps and nodules, or it can be more diffuse and harder to tell from ordinary fat; A few other names used for Dercum’s disease are adiposis dolorosa, adiposa dolorosa, lipomatosis dolorosa, neurolipomatosis, or Dercum’s syndrome; It can be very difficult to get a diagnosis if one has Dercum’s; The disease is so rare that it is little known among the medical community; There are no laboratory tests that establish or rule out Dercum’s disease; Diagnosis requires a history of at least three months of chronic pain in fatty tissue, either constant or recurring; Some articles add (1) generalized obesity, which is not always present (2) asthenia (loss of strength) and excessive fatigue and (3) mental disturbances, including depression, confusion, emotional instability, epilepsy, and dementia; Many people with Dercum’s report depression, occasional confusion (often called “brainfog”) and memory problems; Fortunately epilepsy and dementia seem to be quite rare. Much of the literature reports that Dercum’s occurs most often in obese postmenopausal women; However, it does occur in teenagers and young adults, and about one in twenty patients are male; While weight gain is common, there are many people with Dercum"s who have never been overweight; Losing weight will not decrease the pain or the size of the lumps;Other diseases which may be confused with Dercum’s include familial multiple lipomatosis, which is an inherited condition of usually non-painful lipomas, lipodystrophy, and Madelung’s disease (also known as multiple symmetric lipomatosis, among other names); In those conditions some lipomas (abnormal growth of fatty tissue) may be painful because they press on nerves, but most are not; In Dercum’s disease most or all lipomas and other fat deposits are tender or painful, with the pain often increasing over the space of years; In particular, bumping a Dercum’s lump or lipoma usually hurts, and pinching one usually hurts a lot, much more than one would expect; Sometimes lipomas in Dercum’s are angiolipomas - lipomas which contain many blood vessels; Painful fat can occur anywhere on the body, including the head and neck; Some people have tender or painful fat deposits literally from the top of their head to the soles of their feet; They are almost always in the subcutaneous fat layer, although it seems that at times they can invade other tissues; It appears that not a lot is known about how often that happens;

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