at a glance


at a glance

The symptoms listed below have been compiled from the few articles published on Dercum’s Disease. If you suffer from any of these symptoms, we would encourage you to visit your doctor. None of these are in any way meant to replace the advice and counsel of your doctor. However, many medical professionals are unaware of this disease. If you are concerned about your health, we encourage you to download the printable peer-reviewed materials available on this site and take them with you when you visit your doctor for evaluation. There are no definitive tests for Dercum’s Disease at this time; all diagnosis will be made clinically through a process of elimination. You will inevitably visit many specialists, but it is vitally important that if you suffer from any of these symptoms that you be evaluated immediately. There are treatment options available to you that could potentially alleviate your pain and help you to live a more normal, active, and healthy life. Please read on and be prepared to work with your doctor to develop a plan suited especially to you and your healthcare needs.
     Additional information on all of these symptoms can be found in the Articles section.

• Inexplicable disproportionate weight gain with generalized or localized chronic pain (lasting longer than three months). Weight gain is often contrary to familial tendencies toward obesity and fat distribution.

• Weight gain appears suddenly and has no relation to diet or exercise. It accumulates in a distinctive pattern; the thighs, upper arms, a distinct shape on the stomach, and/or the buttocks. It can also occasionally be found in forearms, hips, and/or lower legs. Despite this rapid weight gain, the face, hands, and often times the back, will be completely spared, signifying weight more closely related to the patient’s actual diet and exercise routine.

• Weight can often be disproportionate from one limb to the next; for example, one thigh could be significantly larger than the other.

• Weight is completely resistant to exercise or diet; patients may experience weight loss in other areas of the body, but the size of affected areas will remain constant or continue to grow.

• Dercums fat will be of strange, abnormal consistency, far different from average fat elsewhere in the body, often with extreme laxity in the skin.

• Lipomas – benign fatty tumors that are typically pain free – will develop in the aforementioned areas of the body. While this can happen to anyone without any correlation to disease, in Dercum’s patients, these lipomas will be painful and tender, especially during their initial formation.

• Susceptibility to infection, with increased pain during infections or allergen responses.

Dercum's Disease - a diagram of the most commonly affected areas of the body

Known Experts

Unfortunately Dercum’s Disease is considered one of the rarest diseases on earth. It is sadly both rare and relatively unknown. This makes it very difficult to find readily available “experts”. To our knowledge, there are only two doctors who have published true multi-year double-blind clinical studies of the disease in the past twenty years. Those doctors are Dr. Brorson & Dr. Fagher of the University of Malmö & the University of Lund in Sweden. Unfortunately neither currently see patients clinically. Beyond that, we are unaware of any experts who have the credentials, experience, and scientific values to back up their claims.
If any other doctors claim to be “experts” in Dercum’s Disease, please be vigilant in evaluating their backgrounds and scientific research. To learn more, please visit our section devoted to Dercum’s Experts and the importance of understanding and Defining Research.

• The weight in the affected areas will be tender to the touch, and many patients report a constant aching, burning, stabbing or some kind of indeterminate nerve pain. Occasionally the pain will radiate throughout the body, thus making it harder to pinpoint its source.

• Extreme sensitivity (hyperalgesia) to this pain is common, making the fatty tissue below the skin sensitive to the touch and is often made worse by tightly fitting clothing or even by showering.

• This pain will increase with the increase in the fatty tissue. Often the pain also increases in connection with menstruation.

• In his original published works dating back to the late 1880’s, Dr. Francis Xavier Dercum notated some unusual presentations of the nervous system in his various case studies of the disease.³ Several repeated modern case studies available via PubMed have noted similar mutations in subsequent Dercum’s patients, including either a mutation of nerve fascicles or even an excess of nerve endings in Dercum’s affected tissues. However, this has not been thoroughly studied in a large clinical setting to determine if this is prevalent among all Dercum’s patients. If suspected in individual patients, tissue samples are needed to determine if nervous mutations could be present and as such contribute to the overall pain syndrome.

• Some patients are extremely sensitive to heat.

• The affected areas may bruise more easily than elsewhere on the body. However, despite this bruising, coagulation tests are almost always normal.

• Almost all patients report headaches, usually a combination of types – tension headaches, classic migraine, “neck headaches” – sometimes with pain in the jaw and eyes.

• Some patients report cognitive dysfunction of varying degrees, with variation in concentration and lapses of memory.

• Many patients report bouts of depression (“atypical depression”, possibly latent). While it is believed this has nothing to do with the onset of the disease, it’s reasonable to conclude it is related to being in chronic pain and struggling with this previously inexplicable disease.

• Feeling hot affects a small percentage of patients, some with a recurring high temperature of 99.5-102.2°F (37.5-39°C) for weeks at a time, with increased pain. The reason is unknown; investigation has provided no explanation.

• In some patients, there is a tendency to swell up, especially in the hands. The fingers become fumbling; tingling and numbness can occur (paresthesis). Compression of the median nerve is common.

• General tiredness, worsened by light physical activity and poor sleep. The tiredness can be included under the term “Chronic Fatigue Syndrome.”

• Tendency towards stiffness after resting, especially in the morning.

• Patients with Dercum’s Disease may also have these association conditions:
Sleep disturbances, Pickwick syndrome, Irritable Bowel Syndrome, coccygodynia, vulvovaginitis, vulvodynia, carpal tunnel syndrome, Tietzes Syndrome, chondromalacia patellae, thyroid malfunction (mainly hypothyreosis), trochanteritis, localized tendonitis, sometimes onset of fibromyalgia, and slight to moderate raising of cholesterol.

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