What is Dercum disease?
Dercum disease - also known as Adiposis Dolorosa, Anders’ syndrome and Dercum-Vitaut syndrome - is a rare condition that is characterized by multiple, painful fatty lipomas (benign, fatty tumors) that occur chiefly in post-menopausal, obese women of middle age. However, although it is 20 times more common in women, 16 percent of the reported cases are males and it can also occur in people who are not obese
The lipomas are located primarily on the trunk region and on the extremities close to the trunk. Unlike ordinary lipomas, there is also pain that can be severe and sometimes debilitating. Dercum disease is a chronic condition, meaning that it is a long lasting condition. In addition, it tends to be progressive.
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What are the symptoms of Dercum disease?
This syndrome consists of four cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) weakness and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion and dementia.
The pain can last for hours, can be paroxysmal (occurring only at certain times) or continuous, and worsens with movement. Dercum disease is often associated with generalized weakness, depression, and irritability. The condition can also be associated with early congestive heart failure, myxedema (a condition associated with severe hypothyroidism), joint pain, paroxysmal flushing episodes, tremors, cyanosis (bluish discoloration of the skin), hypertension (high blood pressure), headaches, and epistaxis (nosebleeds).
View an image of a lipoma: Lipoma - arm
From MEDLINEplus, the National Library of Medicine
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What causes Dercum disease?
The understanding of the cause and mechanism of Dercum disease remains unknown. The origin of the pain is obscure, and the disease is better known as a description of its symptoms rather than as a physiologic or metabolic process. The fatty deposits (lipomas) cause nerve compression and result in weakness and pain.
Some cases reported in the literature have suggested possible causes for Dercum disease, such as the use of corticosteroids, a disturbance of endocrine function, or a genetic cause since it seems to run in some families. Some researchers have suggested that Dercum disease is an autoimmune disorder (a condition that occurs when the body's immune system attacks normal, healthy body tissue). However, no single cause has been pinpointed.
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What do we know about heredity and Dercum disease?
Dercum disease has been reported to occur in families, and in some of these cases it seems to be inherited as an autosomal dominant trait (this means that one out of a person's two copies of the gene, inherited from one parent, is altered). However, most reported cases of this condition are sporadic (the only case to occur in the family).
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What is the treatment for Dercum disease?
There is no "cure" for Dercum disease. At the present time, treatment for this condition is symptomatic, meaning that it focuses on one symptom at a time rather than the whole condition. Depending on the person, options can include weight reduction, surgery for the most painful lipomas, and medications to control pain. Liposuction has been used in some cases.
NHGRI Clinical Research on Dercum Disease:
Currently, NHGRI is not conducting research on Dercum Disease
* Current NHGRI Clinical Studies
* Search all studies on ClinicalTrials.gov [clinicaltrials.gov]
* Clinical Research FAQ
I have developed lumps/nodules/lesions all over my body. They started six years ago and seemed to start on my trunk. Now they are all over my body including my face. It is not painful in one area, my whole skin hurts or should I say subcutaneous tissue/fatty tissue. It seems that it is now spreading to my muscles now. It hurts to move or do anything. I don't know if I have Dercum's Disease, I believe I will never figure out what is under my skin and unbearable. My lumps/lesions hurt worse if I am touched.They also go inwards and do not stick outwards. I read if that they get into your lungs, that is all it takes. I hope you do not have this ugly disease and by the way, I have been to many different specialists and none of them take ownership of this disease.
Good Luck and God Bless,
hi going threw loads of test to many to list got mri friday
symtoms as above fatty lympomas all over stomac, ribs and some in arms in constant pain as been suggested it could be dercums ,but will not diagnose untill all test are complete,
just started a anty depresent wich is good for nerve blocking aswell helps a little bit but still not happy
I wish HERTOHELP, helped me when I first came to this site! He/she provides very good information. I have been studying this disease for some weeks now since the probability of me having this is high.
In one of my journals/posts are links to a couple of sites.... I can provide you with more if you wish.
It depends on what site your on.. but, most say the same things... I do find a bit of variation though. One site will say one thing and then another site will dismiss it.
Type in Decrums disease into your search engine and there will be lots that come up. Also add, Adiposis Dolorosa (another title for it) to your search as well.
Good luck and keep us posted.
thanx for reply
have also done a lot of reserch into dercums
most docs dont know about it have been on sites you recomend have printed it out and shown docs thay all said thay will look into it
if anyone has a answare for pain releife would be nice to here from you
Type Dr. Karen Herbst into your search engine. She has a cite that may help. She is currently the leading specialist in this area.
As far as controlling the pain... every person is different. no one takes the same medications for this for the most part. It has been found that meds prescribed for all types of arthritis are not successful in controlling the pain for Decrums folks. Other folks may disagree with me... so, you see... You and your Dr. will have to use the "Try and see" method to find out what works best for you.
Sorry I couldn't be of more help.
Do the lipomas show up on mri? had a large one removed-it also had invaded surrounding muscle but still did not show up on mri. please help thanks maureen
i had mri a few weeks ago getting results 25 sep if thay do show up i will let you know i have loads of lumps around stomac and ribs mainly
It depends on which site you are looking at. Some sites states, that an MRI,CT,Xray, etc, does not detect and others say they do. I myself have not had any of these done so I really cant say.
I also have lumps around my ribs... please let me know if yours shows up.
You are in my prayers.
got results from spinal mri some fatty lumps did show up gastro has revered me to rumoligist sorry cant spell it thay said thay would know more about dercums and fibro???
just have to wait again hopefully i will get some answers this time
I am glad they showed up.. it gives me a little hope. I am sorry you have them though. You may also want to get an appointment with an endocrinologist and have some tests run for your thyroid. Decrums is an auto immune disease and involves the endocrine system which in turn includes the thyroid and parathyroid glands. I am not sure what test you would need but you can ask in the "thyroid disorder" forum. You should have readings for T3 & T4 levels plus others. Chit Chat, Stella and AR-10 should be able to help you with that they are very knowledgeable in that area. I am just learning about it myself and have lots of questions. It never hurts to ask.
Keep us posted and good luck. You are in my prayers
I HAVE BEEN HAVING SWELLING IN BOTH ARMS SO I LOOK LIKE THE PILLSBURY DOUGH BOY. ALL THE DR SAYS IS THAT IT IS WATER IN THE FATTY TISSUE, BUT THEY HURT; BUT THEY DON'T GIVE ME ANY SUGGESTIONS FOR WHAT TO DO TO HELP GET RID OF THE WATER.
IT SOUNDS LIKE THIS COULD BE THE LIPOMA FATTY TUMORS.
I AM OVER WEIGHT ALSO.
Thickening in the axilla and swollen lymph node in the clavicle areas have shown up on some images and not on others, It is my belief that it depends in the interpreters decison to consider it abnormal appearing or not. The larger than silver dollar mass, clearly visible on the back of my arm is dismissed by doctors because of the way it feels. The leasion at the dome of my liver and nodules on both lungs are questionable and dismissible depending on the person reading the images. Obviously the tissue appears different but not necessarily worrisom or significant. Very recently the doctor removed the swollen lymph node in my left clavicle. I was informed the mass was benign and mainly consisted of fatty cells. That does not tell me what is causing these growths that at times cause considerable pain, depending on my activity. Somoetimes I'm torn between giving up the notion of knowledge and fighting for what amounts to be in part, quality of life.
I'm a highschool athlete that's been suffering pain inbetween my upper and lower back on the right side since early september (during volleyball season). If I press on my back there is sort of a deep mass that I can push on and it sort of moves in place (if that makes sence). It's recently became very painful. I consulted my family dr. who sent me to a scoliosis dr. He said my scoliosis wasn't bad at all and that I probably just had a knot. After two months I decided to try a chiropractor. He informed me that I may have lipoma. So I then returned to my family dr. and he sent me for a ct scan and an mri. Both tests came back with nothing showing.....? I don't understand. The nurse even put a sticker right on the lump for the mri. My chiropractor is set on it being lipoma but I don't know what to think? It's not visible but it's really been bothering me in basketball. If anyone has any advice I would greatly appreciate it. Thankyou for your time =)
I have had "fatty tumor" show up on ultrasounds, My glands have been swollen for months so bad i cant lift my arms strait up. and stomach problems... Oh boy Have i had those in and out of the er a couple of times for pain. and fatigue yeah I always joked about how i never went throught the napping stage of my teen years now I cant wait to get home and sleep.. i have had back problems for about 3 years and all the dr's want to do is give me pills ( which i dont take ) and I am 26 I dont know if anyone knows what kind of test can be done to determine Dercum's? Please let me know I have more dr. appt's this week and stumbling apon this page made me open my eyes a little bigger.... Thanks
My name is Lynette and i have read alot of your testimonys and at least I know I am not alone. About 8 months ago I started getting these tumors so I went to the Drs and he told me it was a fatty tumor and there is nothing thay can do for them. Since then they have spread over 90% of my body including my skull and I am in so much pain I am about to lose my mind.I think I would rather die then go on like this..I feel like it is going to kill me. If anyone has any suggestions please let me know.
I have a what the dr.s are saying a fatty tumor between my chest and throat. I had one tumor removed under my left armpit. I just noticed last week that I a very large "fatty tumor" on my left arm. on my right arm the dr said that I have a long strip of the fatty lipoma tumor. This one hurts so bad tha tI cant lift or use my right arm. and under the armpit, left side before they removed the fatty tumor, I was experiencing on my left breast green and black coming out of my nipple and my breast is tender, Is that caner symptoms? all i know is when they removed the mass under my armpit the black and green fluid went a way..
I am very tired and weak I just cant deal with this.. What can I do?
well my daughter was diagnosed with fatty tumors and the surgeon she was referred to says its from her going from skinny alot of weight then losing it she has not gained that much and never lost what she gained she cries all the time fatigue and pain hard to breathe please let us know what u guys find out bcuz i feel as if my hands are tied . she is 19 yrs old ... she is afraid it is cancer bcuz its sprading all over in her stomach and chest and i hope you all get some answers and help too God Bless
in july 2009 i had a mass come up in lower right back just above waist area it was pea size very painful now i have 4-5 lumps on back now the pain has moved into my lower spine and in right hip very painful im grouchy and it dont hurt all the time seems like i have flare ups went to the doctor sd i have like beads of these lumps: the lumps dont hurt its the bones that hurt down my spine into my buttox all around right side fills like alot of pressure: she sd it was lipomas waiting to go see general surgeon she gave me hydrocodone dont help : seems like the only thing that helps is heating pad: im scared... not sure whats going on does this sound like this disease???? help
have a liver profile -function lab.........
Similar issue here. My wife found a baseball sized lump in my lower/left back. I never felt it, but now that it's been pushed & prodded recently, it's sore. I've also noticed that I'm a little stiff on that side and my coccyx bone area pops every time I take a step (left leg).
I also have had spots show up on my ribs years ago. I live in central California - we have terrible air from farming, pesticides, and bay area pollution. So my doctor just dismissed that finding as calcium buildup.
I've also recently grown a small pea-sized bump on my skull - between the skull and surface skin on the left side of my head. Again, doctor just dismissed it as a cyst due to our local environment.
In the last year, I've started getting skin problems. Itchy back and lower legs. Feels kind of like athletes foot and looks kind of like acne.
Six months ago is when that large lump in my back was found.
Two weeks ago I developed a lump in my left chest area.
As with others, I'm constantly tired. I've noticed swings in mood. I put on 30lbs out of the blue in the last two years. Could be because I'm turning 30 and not as fit, but it's just a lot of little things adding up.
My doctor ordered a thyroid test and may do a biopsy on the fatty tumor in my lower back. He prescribed an acne wash for the skin issues. He thinks I tore my left pectoral muscle, and continues to not be worried about the bump on my head. Pending test results, he thinks the fatigue is due to the weight gain.
I'll post back if any of the tests/biopsy shed new light.