The Dercum Society

Giving hope through understanding; healing through action

Dercums Disease
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Symptoms 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 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. You can also download the printable version here.
• 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 the thighs, upper arms, and/or stomach. 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 what size your body should be.

• 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.

• 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.

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

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• 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.

• 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.

• 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 Dercums patients, these lipomas will be painful and tender, especially during their initial formation.

• 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.

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

• 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 Dercums 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.

Sources:
    1 - L. Kartideningen, Portrait of a Medical Enigma, Journal of the Swedish Medical Association, 10 April 1996
    2 - J. Steiner, K. Schiltz, F. Heidenreich, K. Weissenborn, Dercum's Disease - A Frequently Overlooked Disease Picture, NERVENARZT 73: 183-187, 2002

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