Is anyone familiar with Dercum's Disease also known as Adiposis Dolorosa?

Answer 1

Dercums Disease/Adiposis Dolorosa was identified by Francis X. Dercum in 1892. It's a rare disorder where there are fatty deposits which apply pressure to the nerves, resulting in weakness and pain. Certain areas of the body may swell for no reason and the swelling may disappear without treatment leaving hardened tissue or extra skin folds. Adiposis Dolorosa is a chronic disease with mild to intensive pain in the fatty tissue. Fatigue and obesity are the usual symptoms. This disease can affect the entire body and has many symptoms. This disorder occurs mainly in females between 25 - 60, but can affect all ages as well as in younger people and amongst males. SYMPTOMS: Pain the fatty tumors lasting for 3 months. Obesity occurs in a short period of time, but Dercums Disease can occur without someone being over-weight. The pain in the fat and skin can be very painful and is usually described as aching, stabbing, burning. Swellings of irregularly shaped soft fatty tissue deposits may occur in many areas of the body and may disappear, leaving hardened lumpy or rope-like tissue or hardened folds in the skin. The pain in chronic and will increase in future years. Most commonly affected are the knees, trunk,, forearms and thighs, sometimes on the face and hands. There can be severe weakness. The pain is spontaneous and increases powerfully even at a gentle touch. Individuals with this disorder can become depressed and lethargic or confused. Fatty tumors can be felt in the fat and are extremely painful, but non-cancerous and harmless unless the tumor moves to the lung or heart which can be fatal. COMMON SYMPTOMS: Fingers become clumsy and you can drop things and sometimes the fingers go numb. Disturbed sleep because of the pain, but other forms of sleeping disorders can occur. General fatigue and will get worse with mild activity. Tendency to become black/blue that seems to come spontaneously or after hitting oneself lightly on something. Stiffness when you get up in the morning. Skeletal pain in wrist, elbows, hips, tail bone and the long bones in arms and legs. Headache (tension headache or migraine.) Feeling hot with increased pain and it is enough to prevent the person from working. Tenderness under the feet, like walking on glass. Tenderness in the skin and find it difficult to wear tight clothing or even taking a shower. Infection sensitivity; frequent pain during infections or allergy attacks. The pain often depends on the weather and decreases normally at dry heat. Warm baths have are good, but temporary, but some people with this disorder cannot tolerate heat. This disorder is debilitating and make it difficult to walk, drive a car, turn on the water tap, lift items, carry bags, vacuum-cleaning, etc. CAUSES: This disease is poorly researched. It can grow for many years or very quickly because of external stress such as surgery, pregnancy or flu. Dercums Disease is thought to be inherited as a autosomal dominant genetic trait, particularly strong in the line grandmother-mother-daughter. According to the latest research Dercums Disease is an auto-immune disease such as rheumatism and not a metabolic disturbance. DIAGNOSIS/TREATMENT: It depends what symptoms the patient tells the doctor and what the doctor finds upon examination. There are no tests to take, but some blood samples can show signs of infection and/or that the immune system is very active. There is little knowledge about this disorder and even if the patient manages to lose weight (it's difficult because of the inactivity the patient has to endure because of the pain) seems to have no effect on the symptoms. Medications for pain and to improve sleep; message; warmth and warm baths (for only some patients that don't become affected by heat); acupuncture; practicing relaxing techniques and avoding physical/psychological stress. HOW DO YOU LIVE WITH IT? It all about pain relief. Surgical excision of fatty tissue deposits around joints may temporarily relieve symptoms altho recurrences often develop. Intravenoous infusions of the local anaesthetic drug Lidocaine may give temporary relief from the pain. Peroral Mexiletine may also be effective in eliminating pain for variable periods of time. Psychotherapy may be helpful for enabling affective individuals to cope with long-term intense pain. It is extremely important that the person dealing with this disease is knowledgable about it and that the their family is supportive and also learns about the disease. Support, someone to talk too and even joining on-line websites (chat-lines) with others who suffer from this disease is also helpful.