Dercum's Disease Support Group

isthere anybody there

Hello Reidys.
I have had Dercum's Disease for about eight years now, but have only had a name for it for about 5 yrs. When I first found the discription for Dercum's I couldn't believe it. It discribed me to a T!
My family doctor informed me that he had never hear of it and that I read too much. I then had to make the full round of all the doctors including an infectious disease specialist. I have had a lymph node removed for study, and had a lypoma removed, and the pathology confirmed that it was consistant with the discription of Dercum's disease. Now finally I have found an endocrinoligist that knows what Dercum's is and has actually studied with a doctor in England who treats Dercum's patients. He is the first doctor I have been to that knew what it was! I was exstatic!

Here is a discription of what Dercum's Disease is:

Adiposis dolorosa, also known as Dercum's disease is a rare disease characterized by multiple painful lipomas that arise in adult life. Older medical literature states that "the disease occurs most often in obese postmenopausal women, but can also occur in men." Surveys of current sufferers seem to indicate that the disease causes the obesity. It also occurs in men and women of all ages. The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands. It was first formally described by Francis Xavier Dercum in 1888.

Symptoms:

Pain in the fatty tumors lasting for at least three months. Often obesity occurs in a short period of time. But there is also a type of Dercum's disease that can occur with normal weight. The pain in fat and skin can be very intense, and can be described as aching, stabbing, smarting or burning. Swellings consisting of irregularly shaped soft fatty tissue deposits may occur in many areas of the body. These deposits may spontaneously disappear, leaving hardened lumpy or rope-like tissue or pendulous folds of skin. The pain is chronic and increases with the years, but varies much in cycles. It can exist in practically the entire fatty tissue layer, but most commonly affected are the knees, trunk, forearms and thighs, sometimes sparing of the face and hands. Severe asthenia (weakness)has been emphasized as a feature by some. The pain is spontaneous and increases powerfully even at gentle touch, and massage can feel unpleasant. Some affected individuals may experience depression, lethargy, and/or confusion. Lipomas, "fatty tumors " can be felt in the fat, they are intensely painful, and usually harmless, unless a tumor moves to the lung or heart which can be fatal.

Other common symptoms are:

* Various areas of the body may swell for no apparent reason. The fingers becomes clumsy, a person may drop things and sometimes the fingers go numb.
* Disturbed sleep, many have difficulties going to sleep because of the pain, but other forms of sleeping disorders also occur.
* General fatigue, worsening with even mild activity.
* Tendency to become black and blue; this seems to arise spontaneously or after alleviated blow.
* Stiffness after resting especially in the mornings.
* Skeletal pain in wrist, elbows, hips, tail bone and the long bones of the arms and legs.
* Headache, usually a combination between tension headache and classic migraine.
* Memory lapses and concentration difficulties making it difficult to learn new things and to accomplish intellectually demanding jobs.
* Feeling hot is often felt by the patients, some have 37.5 to 39 Celsius degree fever several weeks in a row, with increased pain and incapacity to work as a consequence. The reasons are unknown.
* Tenderness under the feet, akin to walking on glass.
* Tenderness in the skin, difficulties in wearing tight fitting clothes or taking a shower.
* Infection sensitivity. Frequently increased pain during infections or active allergy attacks.

The pain seems to depend on the temperature and the weather and decreases normally at dry heat. Warm baths have a positive but temporary impact, though some patients do not tolerate heat. Generally increases pain in conjunction with menstruation. Sexual relation problems can arise because of the pain. Dercum's pain always exists, regardless if a person is asleep or awake. The diagnosis of Dercum's disease implies a long, chronic pain syndrome of debilitating nature. The pain can make it difficult to: walk, drive a car, open the water tap, lift items from shelves, carry bags, open heavy doors, vacuum, hang laundry, wash floors, wipe windows etc.

I hope this helps you. It is a long hard road to find out what is going on inside you sometimes and a lot of the time it is not good. The one thing I can tell you is hang in there and try to keep hope. There are new discoveries every day and I have hope that they will find a way to stop this disease some day soon.

Take care, and God bless,

CJ

hi David,
It sure does sound like Dercum's Disease. The best way to cope is to accept it and try to carry on as normal. I try my hardest not to let the awful condition get me down, I dont want it to get a hold neither. i take Amatriptyline too as well as Fluoxetine and other painkillers. I still work but as I said I try to live my life to the fullest, even when I am in a lot of pain. Good Luck with your tests and diagnosis.
michelle

I agree with everyone else ! enjoy everything you can and treat the symptoms . Elch or call me Ela