Dercums disease

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by fibrofogqueen01, Jun 17, 2003.

  1. fibrofogqueen01

    fibrofogqueen01 New Member

    Does anyone out there know of anyone or any info on dercums disease I have been told it could be another thing to add to my fms and oa but no doc will dx me for sure because they say they dont know enough about it.It is a disease that causes alot of the same symptoms as fibro along with very painful lipoma tumors that multiply rapidly which I am experiencing.The shower is even starting to hurt! Thanks
  2. Shirl

    Shirl New Member

    Shalom, Shirl
  3. bakron

    bakron New Member

    Morbus Dercum (Adiposis dolorosa) is a chronic disease with mild to intensive pain in the fatty tissue, fatigue and obesity as the most apparent symptoms. But the disease affects the entire body and can present a long list of symptoms. This disorder usually occurs in females between the ages of 25 and 60, but can début in all ages, as well as in younger people and amongst males. It is about 20 times more frequent in females than in males. Dercums Disease, was originally described in the medical literature in 1892 by the American doctor Frances Xavier Dercum.

    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 Dercums Disease that can occur without overweight. The pain in fat and skin can be very intensive 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, you 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, gets worse with even mild activity.

    ·Tendency to become black and blue that 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 in arms and legs.

    ·Headache, usually an combination between tension headache and classic migraine.

    ·Memory lapses and concentration difficulties makes it difficult to learn new things and to accomplish demanding intellectually jobs.

    ·Feeling hot is often felt by the patients, some have 37,5-39 Celsius degree fever several weeks in a row , with increased pain and incapacity to work as consequence. The reason are unknown.

    ·Tenderness under the feet, it feels like walking on glass.

    ·Tenderness in the skin, difficulties to wear tight fitting clothes or take 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 you sleep or are awake. The diagnosis of Dercums 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-cleaning, hang laundry, wash floors, wipe windows etc.

    Causes

    The causes of the disease are poorly researched. The symptoms and the lack of treatments can seriously affect the quality of life. Since the disorder does not show on the outside it can be hard for others to see the level of difficulties and discomfort the patient experiences. More than half of the patients are unable to work. The disorder can grow slowly for many years or very quickly because of external stress, such as: surgery, pregnancy or flu. Dercums Disease is thought to be inherited as an 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, that was believed earlier.

    Diagnosis and treatment

    The Dercums Disease diagnosis is based on what the patient tells and what the doctor finds at his examination. There are no tests to take, but some blood samples can show signs of infection and/or that the immune system are very active. The doctor can also take blood samples in order to exclude other diseases. The knowledge about the disorder is not well know and many patients are poorly treated. The treatment of Dercums Disease patients is inadequate. Attempts have been made to get patients to lose weight, but it is extremely difficult. If the patients succeed, the weight loss has little or no effect on the symptoms.

    Treatment:

    ·Medication that decreases the pain and improves the sleep

    ·Massage

    ·Warmth and warm baths

    ·Acupuncture

    ·Practicing relaxation techniques

    ·Avoiding physical and psychological stress

    Information about the disorder and how to live with it:

    Treatment of Dercums Disease is primarily directed at easing painful episodes. Surgical excision of fatty tissue deposits around joints may temporarily relieve symptoms although recurrences often develop. Intravenous infusions of the local anaesthetic drug lidocaine may give temporary relief from pain. Additional treatments of lidocaine may be necessary periodically to sustain the effect. Another analgesic drug, peroral mexiletine, may also be effective in eliminating pain for variable periods of time. Psychotherapy may be helpful for enabling affected individuals to cope with long-term intense pain. Other treatment is symptomatic and supportive.

    Conclusions:

    Dercums Disease causes obesity with painful fatty tumor and fatigue. It is a chronic, often very painful disease that has incapacitating consequences. It's obvious that this disease affects all aspects of a patient's life, but the more the patient and relatives learn about the disorder and how to manage to live with it, the better results they can achieve. Collaboration is needed and occasionally a big effort by the patient to learn to live with the disorder. Patients find that they can no longer do all that was easy before. People with Dercums Disease feel pain for a number of reasons. Small things that other takes for granted, such as wringing a washcloth, opening a can or taking a shower, can be an extremely painful experience. It is important that Dercums Disease patients receive reliable information about the disorder and support from the surrounding community in order to be able to live as positively as possible and that they find their own capabilities. This helps the patient to be less dependent on others, which is of major importance in both family and working life.

    Resources:

    Dercum's Disease - Talk about this disease online with others who have it. Join the chat every Tuesday at 7 p.m. PDST (or 10 p.m. EDST) on AOL at "dercumchat"

    "Evidently the disease is not simple obesity. If so, how are we to dispose of the nervous elements present? Equally plain is it there we have not myxoedema to deal with. ... It would seem, then, that we have here to deal with a connective-tissue dystrophy, a fatty metamorphosis of various stages of completeness, occurring in separate regions, or at best unevenly distributed and associated with symptoms suggestive of an irregular and fugitive irritation of the nerve-trunks – possibly a neuritis … Inasmuch as fatty swelling and pain are the most prominent features of the disease, I propose for it the name Adiposis Dolorosa." [From: Dercum FX. A subcutaneous connective-tissue dystrophy of the arms and back, associated with symptoms resembling myxoedema. University Medical Magazine Philadelphia, 1888; 1:140-150.]

    Dercums Disease from NORD's (National Organization Of Rare Diseases)Rare Disease DatabaseDercum disease by Birger Fagher Information from the Swedish Dercumassociation

    Morbus Dercum, the unknown disease by Lilian Hellgren

    Generel information from the Swedish Dercumassociation

    Dercum Disease by Håkan Brorson and Birger Fagher,

    Information about Morbus Dercum (adipositas dolorosa) from the Swedish Dercumassociation by Berit Lindmark

    Maries site about Dercums disease

    Radio program "Karlavagnen" about Dercum disease with Birger Fagher, 95 12 07
  4. MemoryLane

    MemoryLane New Member

    Have you considered seeing a Pulmonary specialist? This disease has the added danger of forming fatty tumors which can cause pulmonary complications including death. I'll bet this sort of specialist will help you.

    Lane
  5. JaciBart

    JaciBart Member

    Are you suggesting that fibro is dercum??

    Sounds like it is definitely possible.

    I have a lot of "pain to the touch" as it describes, it is only in my fat, I tell my hubby that my fat hurts.

    I will look into this more.

    Pls keep us posted what you find.

    Jaci

  6. fibrofogqueen01

    fibrofogqueen01 New Member

    Thanks for all the great info ! Everthing I have read talks about how rare it is I wasnt sure if anyone would know what I was talking about.I have tried talking to many doctors around my old house and everyone told me it sounded very similar to my symptoms but they didnt know enough about it.I just moved to a new town and hoping to find someone here that knows more about it.I have had 4 of the tumors removed because they caused to much pain.I am also having a severe problems with becoming over weight I went to 135 to 200 in a year and didnt change a thing with my daily activities and diet.I dont believe fibro is dercums I do believe it is a diffrent disease that has very similar symptoms but the painful fatty tumors have to be present for dercums.I have just gotten worried over the years because they are spreading out on my body.I only had them on my arms in legs in the beginning now they are on my back and hips.I am worried they will move to my chest area.I am also wondering if the pain in my wrist ankles and knees would be from the dercums not Oa.I am not trying to dx myself by any means I just think the dercums sounds like my symptoms every painful annoying one of them.I beleve it is fms and dercums but who am I to say.Well hope you are feeling well today and in the future. Tanita
    [This Message was Edited on 06/18/2003]
  7. Achy-shaky

    Achy-shaky New Member

    I just came across this post and am amazed at the description of this disease I never heard of. I have fatty tumors that hurt and my Rheumy could not explain why so I want to take him the info supplied from Bakron.

    I just did a search and found more info on the emedicine website - it has associated conditions and mentions fibromyalgia with a lot more info.

    Thanks for bringing this to my attention.
    Blessings,
    Shaky
    [This Message was Edited on 07/05/2003]
  8. klutzo

    klutzo New Member

    I have tiny fatty tumors all over my body that appeared about 4 yrs. after I got Fibro. They don't hurt unless I press on them though.
    I also went from 134 lbs. to 197 lbs. without changing my diet, and I actually exercised more than before. I always thought it was the anti-depressants and hormone replacement drugs that put the weight on, and recently finding out I had been hypothyroid all this time, but maybe I am wrong.
    This sure sounds like FMS, except we all know people who have lost weight when getting Fibro or stayed the same.
    Please keep us posted on what you find out.
    Klutzo