Dercum's Disease - From a patient

Main Category: Pain / Anesthetics
Article Date: 09 Jan 2004 - 0:00 PDT

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by Dorrit Hvam, Denmark (a Dercum's patient) Dercum's Disease is a chronic, almost unknown disease, described for the first time by the American neurologist Francis X. Dercum (President Wilson's personal doctor) in 1888.

In spite of the fact that the disease has been known and described for more than 100 years very little research is going on - as solving the enigma of such a rare disease offers neither money nor prestige.

The disease is also known under the names of Lipomatosis Dolorosa, Adiposi(ta)s Dolorosa, Morbus Dercum and Dercum's Syndrome.

Dercum's Disease can emerge quickly or develop over a long period. As for now, the cause of the disease is not known. Among the guesses are an auto immune defence disease, a virus, or a genetic fault.

Some families seem to carry an inherited factor. The symptoms are lipomas or 'cushion'-like fatty swellings, chronic pain, described as burning or smarting. The pain can be found in all of the subcutaneous fat, but also in the skeleton and joints.

The pain can vary regarding strength and localization, but is almost always symmetrical.

In almost all cases the patients will become heavy overweight, about 50% above their normal weight.

Fatigue is a very important symptom which can arise very suddenly in connection with even slight physical strain and put a stop to any kind of activity. The disease makes it difficult for the patient to walk or stand up for long periods, and can in the long run develop into a real handicap.

The swellings or lumps, which can be very tender and sore, can develop all over the body, often starting with the knees, thighs, and arms. The tenderness and pain make it difficult to sit or lie in the same position for very long.

Apart from that, other symptoms can occur (e.g. Sjogren's syndrome and others, listed in the Fagher article on Maureen's website, see below).

In some cases temporary pain relief can be obtained by lidocaine IV. This treatment is not without a certain risk and does not help all patients.

Liposuction has been used as a treatment, but most commonly the swellings or lipomas turn up again after a while. Ordinary pain killers have little or no effect. Many patients will need morphine.

All kinds of exercise, physiotherapy etc. make the condition worse. Losing weight is almost impossible and does not ease the pain.

Most Dercum patients must give up their work and will need aids and appliances in their home as well as for getting around. Social life is affected in various degrees. Small thing that used to be easy will suddenly turn impossible to perform. Even wearing clothes or taking a shower might be very painful.

Some differences have been proven between the cells of Dercum patients and those of normal overweight people. Dercum-cells are bigger and have a higher production of heat and contain larger amounts of some fatty acids (for further information, please read Dr. Fagher's scientific work at Maureen's website
http://dercums_data.tripod.com/fat_heat.html).

The prognosis is not good, due to the fact that there is no treatment or cure available, and the disease may increase over time. It might even be lethal if attacking inner organs.

Please feel welcome to visit my homepage about Dercum's Disease at
www.algon.dk/dercum.

By using the link:

http://www.algon.dk/dercum/dercumeng3.php

from the English section you will find a list of the best web sites with information about Dercum's Disease.