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Also known as Dercum's disease, adiposis dolorosa is a disease that results in the formation of benign tumors called lipomas. Lipomas are made of fatty tissue and reside underneath the skin, usually on the legs, arms, or torso of people with adiposis dolorosa. While lipomas caused by other conditions are sometimes completely pain-free, people with this disease typically experience a great deal of pain from their tumors. Adiposis dolorosa is a very uncommon disease, and researchers are not yet certain what causes it. A cure has not been discovered, but there are treatments that focus on helping the patient deal with pain associated with this disease.
The most well-known symptom of adiposis dolorosa is having more than one painful lipoma. Sleeping disorders and general fatigue are also common in those diagnosed with the disease, especially if the person regularly experiences severe pain. Difficulty concentrating, frequent memory lapses, and clumsiness are also associated with the disease, sometimes significantly affecting the patient’s quality of life. Overall tenderness, especially on the sole of the foot, are other adiposis dolorosa symptoms. Still, other symptoms may present themselves, such as a long-term, low-grade fever, minor headaches, and random, otherwise unexplained swelling or bruising of body parts.
Adiposis dolorosa is a rare disease, therefore detailed research is lacking. While researchers are not sure what causes it, several potential causes have been brought forth, including a genetic disorder. There are some reported cases of the disease occurring in families, but due to the rarity of the disease, these reports are few and far between.
The diagnosis of adiposis dolorosa may be difficult, if it is diagnosed at all. As a rare and poorly understand disease, it is very unlikely to get a quick, accurate diagnosis. There are no formal tests to confirm that one has the disease, nor are there many physical signs. Doctors are generally left making a diagnosis based on what the patient tells him or her, which may not be detailed and accurate enough to come to the correct conclusion.
Treating adiposis dolorosa often involves taking medication to temporarily relieve the pain. In fact, this is the primary form of treatment because there is no cure. Surgical removal of the tumors may also be performed, but the high probability of recurrence can make the surgery not worth the time, money, and risks for some people.
I think I may have this (Dercums Disease) but how do I get someone to diagnose it? I have small Lipomas along ribs, in my upper arms, in my thighs and along my sternum.
Most of them in my arms and legs are small and only hurt if they are bumped or pushed on. The ones on my ribs hurt all the time now, and I feel like I can't take a deep breath or wear a bra because it causes discomfort. I am tired all the time and have some mental fogginess occasionally. Any suggestions?
I have this disease which is also known as Dercum's Disease: the doctor who first named this disease. I have had it for over 40 years. It is progressive and I am using a wheelchair now and my pain is constant.
It hurts too much to walk as the lipomas encircle my hips as well as all my other joints. Now my entire fat layer is full of lipomas all over my whole body. I also have the other symptoms of this disorder, including dry eyes and mouth, IBS and lipolymphedema.
I take as little pain medicine as possible and find joy in living despite my limitations.
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