Adiposis Dolorosa (literal meaning is painful fat) was first described in the late 19th century by an American neurologist, Dr. Francis X. Dercum, who later became part of Woodrow Wilson's medical team after the President suffered a stroke. The most telling symptoms of Dercum’s were painful multiple lipomas (fatty lumps) located in the trunk area and obesity. At that time, it was believed that only post-menopausal women suffered this painful disease.
The next notable research on Dercum’s Disease, was published in 1996 by two Swedish doctors, Håkan Brorson, M.D., Ph.D. and Birger Fagher, M.D., Ph.D. In their studies, they found that the disease would first show signs in women from the ages of 20-40 but could also be detected in childhood. They also were able to determine that there are 3 different types of this disease:
• Type I or juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips,in rare cases only evident in upper-arm fat.
• Type II or diffuse, generalized type, where widespread pain from fatty tissue is found, apart that of type I, also often in the dorsal upper arm fat, in the axillar fat, glutealt, in the stomach wall, in dorsal fat folds and on the soles of the feet.
• Type III or lipomatosis, nodular type with intense pain in and around multiple "lipomas", sometimes in the absence of general obesity. Lipomas are approx. 0.5-4 cm, soft and are attached to the surrounding tissue. Histologically, these are not always encapsulated. Some have been classified as angiolipomas.1
OK, now that the techie/medical talk is done, I’ll tell you what I have found in my years of research.
Though it is true that it is found in women much more than men, Dercum’s Disease does not discriminate. There are noted cases of Dercum’s all over the world. You do not have to be overweight to have Dercum’s. There are cases of it running in families and there are stand alone cases that have no other kin who has DD. Though it has a lot of similarities to other chronic pain and auto-immune diseases, it will not show up on any tests (as I write this, there is research being done on finding a test, so hopefully they will find one soon and that it can help with early detection).
Removing the lipomas have helped some and made it worse in others. It really should be up to you and your doctor if you want to remove any though a dermatologist can tell if the material is adipose or not. I was told by Dr. Herbst to definitely use compression after any surgeries, no matter how small the cut.
Footnote:
1 This article is © 1996 by LÄKARTIDENINGEN - The Journal of the Swedish Medical Association
