What is Dercum’s Disease?
Dercum’s disease or Adiposis Dolorosa is a poorly understood disease that is not well known in the medical community even though it was first described in 1888 by a doctor in the United States, Dr. Francis X. Dercum. To receive a brochure on Dercum’s Disease, click here.
The hallmark of the disease is painful multiple fatty growths (lipomatosis) ranging in size from rice grains to growths that can weigh up to 10 pounds or more. These painful fatty growths can be found anywhere on the body in subcutaneous fat. Even more baffling is that the growths can ‘morph’ in shape in real time. The disease affects both men and women, but men only account for about 5% of those diagnosed.
While obesity is more the norm with Dercum’s disease, not all patients become obese. Dercum’s patients have difficulty standing, walking, kneeling, climbing up and down stairs, and getting up from a sitting position. Obviously with this type of chronic pain, the patient’s social and private life suffers.
There is a laundry list of symptoms accompanying this disease: Overwhelming fatigue, joint aches, disfigurement, muscle pain and stiffness, muscle weakness, skeletal pain, neuropathy, headache, arrhythmia, easy bruising, heartburn, constipation, bloating after meals, shortness of breath, depression, sleep disturbances and anxiety. The pain from Dercum’s is often difficult to control.
‘Brain fog’ is another symptom. Difficulty concentrating, difficulty expressing thoughts, impaired memory specifically short- term memory loss, long term memory loss, and confusion are examples of the various types of brain fog known to occur. While these symptoms may or may not be present in all Dercum’s sufferers, one thing is sure: Dercum’s disease is a progressive, painful and debilitating syndrome that affects all bodily systems.
Dercum’s is an insidious disease; the symptoms can be somewhat nebulous and mimic other diseases. By the time a Dercum’s disease patient is diagnosed, he or she may have previously seen several physicians, only to be told to lose weight and start an exercise regimen, however exercise may cause increased pain and fatigue compounding problems even further. As Dercum’s progresses, pain, weight, fatigue and brain fog may increase with these symptoms becoming more pronounced in some than others. As a result of an ever-morphing body, constant pain, fatigue, and dismissive health professionals, many patients suffer from depression. As with any chronic disease, depression can become a factor especially without support, particularly from family, doctors and friends.
Providing support to someone who looks well on the outside is sometimes more of a challenge than expected, especially if the person in need is overweight and does not exercise or seem to be trying to help themselves. Rest assured, however, that loving support is one of the keys to success for coping with Dercum’s. Support groups are also a good way to share symptoms and learn about things that have brought relief from the various problems. It also helps to know that others understand exactly what you are experiencing and will help you understand that you haven’t been losing your mind after all. There are numerous reports of joyful tears when a Dercum’s patient finds validation.
Currently there is no cure and few effective treatments, but there are several things that may help lessen the severity of symptoms. It is important to start out with one treatment and/or medication and gradually add additional therapies one at a time, paying careful attention to any changes. Pain management is of key importance when managing the health of a Dercum’s disease patient. A ‘normal’ regimen of pain meds may not even begin to help the pain. Health professionals must be patient and be willing to try several different types of pain meds to determine what will help. Keeping a daily diary is a good way to document your progress or any unpleasant side effects. Bear in mind that what helps others may not help you, so understand that finding the right combination to help you may require some persistence on your part. Comfort aids and mobility aids should also be considered when necessary. Items such as canes, scooters, gel cushions, and gel mattresses are but a few of the items available. Please refer to the Resource section of this website for important links regarding Treatment.
Things that may worsen Dercum’s symptoms are: strenuous physical therapy, strenuous exercise, repetitive motions, lack of sleep, poor diet, surgery, steroids, trauma and stress to name a few. It is important to become familiar with your own personal triggers so that you can avoid additional pain.
Many patients find warm pool therapy or very low impact exercise helpful. Others are experiencing relief from swelling and a decrease in pain from Manual Lymphatic Drainage, but it is extremely important to find a licensed therapist to avoid further damage to your tissue. Again, it is stressed that you find what works best for you through a process of elimination.
In the United States, research is ongoing but as with many orphan diseases, funding is extremely limited. Karen Herbst, PhD, MD, San Diego, CA, began conducting research into fat disorders in 2005. We would like to encourage the medical community to embrace the study of fat disorders and expand areas of research. There is speculation and some supportive data that perhaps Dercum’s is not as rare as once thought, but instead, very under-diagnosed. Keep checking this site for new information and please consider making a donation to the cause.