For example, lipedema, which causes painful fatty growths under the skin, shares many clinical features with Dercums disease. As you know Dercum's disease, familial multiple lipomatosis (FML), adiposis", "Hello @iamrare2, Welcome to Connect. A specialist would be able to differentiate the two. Whats This Fatty, Moving Lump Under My Skin? This disease is inherited in the following pattern(s): Patient organizations can help patients and families connect. It's what leads to breakthroughs and what keeps you safe. Frequently Asked Questions, The Dercum Society was founded by Heather Lawver, herself a sufferer of the disease. Liposuction assisted lipoma removal option or alternative? Adiposis dolorosa is 20 times more common in females. Hello Jill, and welcome to Mayo Connect we are people living with a variety of conditions. In our experience, the best doctors on the planet are those that are so excited to learn things new that they look like a kid on Christmas morning. He was interested in my case, he listened and he read the info I had researched. Connect with thousands of patients and caregivers for support and answers. Due to the fact that adiposis dolorosa patients complain of multiple systemic symptoms, ranging from joint pains or low-grade fever to cognitive changes, an extensive work-up including many procedures is often perfotmed. The doctor may order a biopsy to confirm whether the fatty tissue growths are due to Dercums disease. My 2nd surgery 28 were removed and it was discovered that I had 2 different types of lipomas. Journal of Surgical Research. Some patients report feeling hot; in rare cases adiposis dolorosa is associated with low-grade fever. The impact of lipomatous tumors on type 2 diabetes: Are adipose-derived tumors metabolically active? If they show a smile and accept the opportunity, youll know theyre a good doctor. [6], The disease was described for the first time by an American neurologist Francis Xavier Dercum, who headed the University of Pennsylvanias Neurological Clinic and was the personal physician to President Woodrow Wilson. Orphanet J Rare Dis., 2012April 30. doi: 10.1186/1750-1172-7-23. One patient's symptoms were improved with methotrexate and infliximab. I left the office crying never to see him again. Doctors do not know. Medical News Today has strict sourcing guidelines and draws only from peer-reviewed studies, academic research institutions, and medical journals and associations. Dercum first described in 1888(1) a group of signs and symptoms that now bear his name, Dercum's disease (DD). Females are 530 times more likely to develop Dercums disease than males. Am J Med Sci 1892; 104: 52135. [4], In the 1980s, treatment with intravenous infusions of lidocaine (Xylocaine) in varying doses was reported in nine patients. Dercum's disease is a rare condition characterized by multiple painful fatty tumors, called lipomas, that can grow anywhere in subcutaneous fat from scalp to plantar surface of the foot. The mechanism in the rat study case was thought to be a decrease in microglial activation subsequent to nerve injury. It is particular useful for localized disease for type 1 adiposis dolorosa with juxtaarticular involvement . Continuing Medical Education (CME/CE) Courses. In 2004 and with a new doctor and with more lipomas my new doctor agreed that I needed to see a surgeon. An early report from 1934 showed that intralesional injections of procaine (Novocain) relieved pain in six cases. [ 1] A multidisciplinary approach to treatment is recommended. Click here. Fascia is the thin layer of connective tissue surrounding organs within the body. Three cases of a hitherto unclassified affliction resembling in its grosser aspects obesity, but associated with special nervous symptoms adiposis dolorosa. Hi @vowelmistress, lipomas are a symptom of Dercums disease, but not the cause. @colleenyoung I was wondering if there is a way for people with Dercum's Disease, FML, Adiposis Dolorosa and Lipomas to have it's own support group? Several articles have also noted an increased risk for depression. @colleenyoung Thank you for your response. The person will also have multiple lipomas, which are the primary feature of the condition. In contrast, Atkinson et al. @pamelars60 and @hippygrandma both have mentioned that they have Dercums disease along with several other conditions, including fibromyalgia, and may have some experiences to share. 30 Apr 2012; 7: 23. Peev I, Spasevska L, Mirchevska E, Tudzarova-Gjorgova S. Liposuction assisted lipoma removal option or alternative? After many years complaining about the pain I was in I was diagnosed with Fibromyalgia. Treatment of adiposis dolorosa is symptom specific and targeted towards pain relief . Slightly elevated ESR and acute phase reactants have been reported. When you meet a new doctor with a great deal of kindness, patience, and humility on your part politely ask them if they might be interested in reading a medical journal article about a rare disease youd heard about and causes you some concern. (A well-written differential diagnosis of adiposis dolorosa and its management.). ), (A recent study providing evidence that adiposis dolorosa is an inflammatory disease. You never know the impact you may have: Meet @karukgirl. Dominant means that only one copy of the responsible gene (causal gene) must have a disease-causing change (pathogenic variant) in order for a person to have the disease. 2019;57(5):281-87.doi: 10.5114/reum.2019.89521, Ibarra M, Eekema A, Ussery C, Neuhardt D, Garvy K, Herbst KL. Note, GARD cannot enroll individuals in clinical studies. vol. Dont miss out on todays top content on Dermatology Advisor. Cyst vs. Lipoma: What Are the Differences? Doctors may also use imaging tests such as CT or MRI scans to aid the diagnosis process. 33. Dercum disease. Dr. Karen Herbst confirmed my diagnosis and then some. What do we know about heredity and Dercum disease? Some researchers suggest that Dercums disease is an autoimmune condition in which the body mistakenly attacks its own healthy cells. May occur in the absence of obesity. Pain Management The most difficult aspect of treating Dercum's Disease is managing chronic pain. Type 3. MNT is the registered trade mark of Healthline Media. In 2008 I realized I needed to find out what exactly was going on with my body myself. A person may develop Dercums disease due to: Other possible causes of Dercums disease include: Research has linked Dercums disease to a range of other health conditions, including: Dercums disease is underdiagnosed, so researchers do not know how frequently it occurs in the general population. Although the Dercums fat most likely wont be influenced by diet or exercise, continuing to maintain a healthy lifestyle will contribute to a much better quality of life. In most cases, Dercums disease occurs spontaneously. If youve found that eagerness of a kid on Christmas, youve found the perfect partner in your medical care. Dercums disease is a rare connective tissue disorder. Thats very important! Intravenous lidocaine 400mg every other day provided pain relief for 10 hours to several months. Although the pain itself varies, it may have the following characteristics: A person may also experience brain fog or fatigue during a pain flare-up. Consult doctors, other trusted medical professionals, and patient organizations. Meet The Dercum Society. In most cases, there doesnt seem to be an underlying cause. In a female patient who is obese with pain around joints and weakness, common diseases such as osteoarthritis and hypothyroidism should be ruled out. They may offer online and in-person resources to help people live well with their disease. 2023 Dotdash Media, Inc. All rights reserved. The exact cause is unknown. A 41-year-old woman with painful subcutaneous nodules. The Society is an informal gathering of Dercums patients, their families, and doctors, dedicated to making scientific information about the condition more readily available to the general public. https://www.mayoclinichealthsystem.org/locations/eau-claire. If you have a problem with fat in any of the diseases listed above, you have a connective tissue disease. arrow-right-small-blue National Center for Advancing Translational Sciences. Most commonly, they appear in the trunk, upper arms, and upper legs. This. We are dedicated to only providing information that can be traced back to peer-reviewed medical journal articles. Involvement of other medical care professionals may be called for, such as psychiatrists in bouts of depression, dieticans for weight reduction, and surgeons when a localized lipoma is botherosme Patient support groups can provide invalubale information to the patients and their families. Pain may be caused by lipomas pressing on nearby nerves or inflamed connective tissue, also called fascia, which is commonly associated with the lipomas. Hidradenitis suppurativa. This page is not available in other languages. Easy. What tip would you share with someone new to Dercum's? 2007. pp. Subcutaneous adipose tissue therapy reduces fat by dual X-ray absorptiometry scan and improves tissue structure by ultrasound in women with lipoedema and Dercum disease. As the aetiology of Dercum's disease is probably not inflammatory, it is plausible that the improvement some of the patients experience when using corticosteroids is not caused by an anti-inflammatory effect. First described in 1892 by the American neurologist Francis Xavier Dercum at Jefferson Medical College in Philadelphia, Pennsylvania, Dercum disease (adiposis dolorosa) is an unusual progressive syndrome of unknown etiology characterized by multiple painful lipomas that arise in adult life, most often affecting obese postmenopausal women. On physical examination, patients have multiple tender and painful circumscribed lipomas mainly on the abdomen, buttocks, and upper and lower proximal extremities. emotional instability, depression, epilepsy, confusion and dementia. All individuals inherit two copies of most genes. Most cases are sporadic (not inherited) but a few familial cases with autosomal dominant inheritance have been reported. In some people, the lipomas cause mild discomfort when pressed, while others may experience severe pain. The nervous system is made up of the brain, spinal cord, and nerves. Dercum FX. Know a specialist or pharmacist you already like? There are currently no known mechanisms for this disease. Slow growth (often staying the same size for years), Painless lumps (However, if they grow to be 2 inches or bigger, they may start to hurt. Dercum's disease is a rare condition characterized by multiple painful fatty tumors, called lipomas, that can grow anywhere in subcutaneous fat from scalp to plantar surface of the foot. It can affect people of any age but is rare in children. [2][4] Some cases of Dercum's may occur in one or more people in a family with familial multiple lipomatosis. I am having pain in my feet and ankles. "Hi @vowelmistress, lipomas are a symptom of Dercums disease, but not the cause. Thanks. Does anyone know any knowledgeable docs in Wi, MN, or IL, IA Im in Madison (hence my MadvZebra name). The mechanism is thought to be mediated by tumour necrosis factor inhibition. He sent me to a dermatologist at our local University Hospital which also is a medical research facility. - Drug Monographs 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. Those two traits tend to propel medical students to the tops of their class and doctors to the top of their field. Dercum's disease. This section is currently in development. vol. 2005. pp. Alternatively, if they react with an attitude that they know everything there is to know, then that doctor probably isnt the one for you. Some people also try alternative therapies, such as: Below are some commonly asked questions and answers about Dercums disease. We do not solicit nor accept donations. Visit our Articles section and print out at least one of the modern articles listed there. Welcome @iamrare2, I love the username. Disease at a Glance Summary Adiposis dolorosa is a condition characterized by the growth of multiple, painful, lipomas (benign, fatty tumors). Reference: Data from the Newborn Screening Codingand Terminology Guide is available here. Ask them for a referral! I believe that the people (I'm one) who suffer with the rare disorder of Dercum's or Lipomas alone should have a support group for themselves. The mechanism of action is unclear. Campen R, Mankin H, Louis DN, Hirano M, MacCollin M. Familial occurrence of adiposis dolorosa. Sebaceous Cysts: Symptoms, Diagnosis, and Treatment. A higher concentration of monounsaturated fatty acids was noted in the lipomas. The number and severity of symptoms experienced may differ among people with this disease. Lidocaine patches have been found to be helpful in managing breakthrough pain. Successful treatment of Dercum's disease by transcutaneous electrical stimulation. These specialists will be able to provide key information about what is causing symptoms and possible treatment options that may be beneficial. The mechanism for the pain-reducing ability of corticosteroids in some conditions is unknown. Please, do your research and always insist on science-based medical information. There is no cure, so the treatment focuses on symptom relief. [1] Pain associated with Dercums disease can often be severe and may be caused by lipomas pressing on nearby nerves or inflamed connective tissue, also called fascia, which is commonly associated with the lipomas. [1], The onset of Dercum's Disease can be rapid or insidious and progressive, beginning most often in the third decade. Learn About Scientific Research, We get a lot of questions from patients and their families. Ultrasound and magnetic resonance imaging can play a role in diagnosis. J Am Acad Derm 2001; 44: 1326. FAQ | The Dercum Society So little is known, so few professionals are aware or treating it. Mutation is an older term that is still sometimes used to mean pathogenic variant. There are also some anecdotal reports of lipomas developing following trauma or repeated irritation, including following surgical intervention. T. The prevalence of Dercum's disease was found to range from 150 to 150,000 in the US population. I want to know if anyone else suffers from lipoma pain? As a pilot study, 10 participants with AD completed pain and quality of life questionnaires before and after 2040 minutes of CVAC process daily for 5 days. Maitland and Afrin both have good info on MCAS). Not enough studies have been done to substantiate that diet and supplements could help with the disease. ), (A well-written differential diagnosis of adiposis dolorosa and its management. Imaging by magnetic resonance imaging (MRI) and ultrasound may demonstrate lipomas.There aew no specific diagnostic lab tests. I thought I share a few links in case you haven't already seen them and hopefully provide more information for members with this rare disorder. Researchers have proposed a 'minimal definition' based on symptoms most often part of Dercum's disease: 1) Generalized overweight or obesity. Your experience may be different from others, and you should consult your primary care provider for more information. Patients report general fatigue, lack of sleep and headaches. [9], Common treatments for Dercum's disease is directed towards treating the individual symptoms. The pain can last for hours, can be paroxysmal (occurring only at certain times) or continuous, and worsens with movement. Liposuction can be considered for patients suffering from extreme, debilitating levels of diffuse painful fatty tissue, however the risks inherent with these procedures are high. Dercum disease is often associated with generalized weakness, depression, and irritability. By Adrienne Dellwo It is a rare disease characterised by a combination of features: Multiple encapsulated fat overgrowths ( lipomas) on the trunk and limbs Painful subcutaneous plaques Ecchymoses (bruises) without noticed trauma. Dercum's Disease: A Case Report of a Patient Having Both - Hindawi Pain relief medication may be administered to temporarily reduce the discomfort in the patient. That curiosity is more often than not paired with a deep passion for improving the lives of others. Meaning its root origin comes from a genetic mutation which affects the formation of fat cells. Dercums disease can also occur in males, although it is less common. There are studies currently proposing several theories of the causes which include inflammation of the adipose tissue, nervous system malfunction and endocrine malfunction.