DERCUM'S DISEASE

I have been diagnosed by a rheumatologist with Dercum's Disease which seems to be related to fibromyalgia, which I have also been diagnosed with for over 40 years. I have hundreds of very painful fatty tumors all over my body. They are in the adipose tissue mostly. They are in bands around my joints and rib cage and hips, ect. They seem to grow along nerve pathways. My grandparents came from Sweden. Most of the research for this disease seems to be done in Sweden. I am in a lot of pain all of the time. It hurts to walk, sit or lay down. Do you think this is a more common disease in Swedish people? I also have the usual fibro complaints of IBS, Sjogren's Syndrome, migrains and CFS. I am insulin dependant with type 2 diabetis and diabetic neuropathy. Can you suggest anything to help me? Thanks!

[Jhewels]

I have dercum's rheumatologist says I have fibromyalgia secondary to Dercums. It is list in the rare disease database. you sound like you have it find another doctor first call the office ask him or her to preview the information on Dercum,s. Please add that it is important to you. I then had the areas biopsy at dermatologist that were painful  they came back as lipomas. I also had relief in an area I though was caused by arthritis in the hip but it was alipoma on the never. I believed I had lipomatosis type III dercums and a general surgeon I went to see said I had lipomatosis everywhere in my thigh along with lipoma he confirmed it without my saying it . he would not remove unless they were really large. I go to pain clinic and treat the symptoms no other options.

[reidys]

hi been diagnosed with same fibro/dercums basicly i have liitlelumps under the skin in the tissue all over but mainly in the ribs and belly i take amertryperline wich seems to help besides that ther is not much thay can do ?????????????????

[amy7390]

I think I have this condition.but have not been diagnosed.I have the small fatty lumps all over my body(very painful) and a lot of the other symptoms.I thought I had cancer, Last night I finally did a web search and found dercums.It would sound crazy to most people but I was so excited to find all this imformation. Thank you all.Amy in Indiana

[theswallowsnest]

I have been diagnosed for over 10 years.  Did all the tests. It isn't a good diagnosis.  Easiest way to be diagnosed is to have a lump removed and analyzed.  If it is anything related to an angiolipoma it is Dercum's. I don't allow lumps to be removed because they come back even larger than before. No pain treatment has been known to help the pain.  Just makes other problems like addiction that you have to deal with.  BUT Lidocane seems to help.  I use patches on the lumps but have not had injections.  It takes a few days for it to kick in but it eases the pain in the location so you can concentrate on another miserable area!  Sorry to say but the only treatment is to treat things like the IBS and other problems that come with the disese (disease) and to eat good healthy foods. I call them feel good foods!  I have had to seriously turn my life over to a higher power to have any peace or motivation to my days.  

[shhe52]

too all of you i havent read anything,to the affect of these disease does to your mental.i hope im not alone yes im in alot of pain but,also i cry an dont want to except that this is it,an this is just gettin worse.i worked 20yrs an 13 of them sick an going to doctors in surounding areas.until 1984 had biospy on inter thighs.they removed nodgules with masses an tanish fluid in them..i got so bad by 1990 could'nt work anymore so finally doctor said i had fibormyaliga.so i did reserch an nothin an suffered.an now all these masses an tumors2003 doctors said i had  another disease. he hadnt seen in 50yrs so its just geetin more painful.an i have nodules in both lungs.ive had ct scans ever 6months to make sure no changes.so i have shortness of breath an my lungs hurt an feel like they need culddled..ive also have had pancreatic an once you had that,u always have a sickly pancrease.i never was a drinker.the tumor an masses in my left hip an leg is worse than my right,but it hurts to walk.whats sad is my oldest daughter has it,startin as a mass on top of her leg big as a grapefruit,its covered all over my ribs.hips thigs,i would donate my body to science.this is like from another world.an its invaded my body an its getting my organs.god helps us.

[anbuma]

i wa sdiagnosed with fibromyalgia and arthritis and i also have raynauds disease.over the last couple of weeks  have felt small hard lumps in my abdomen.i searched on line fro this and eventually discovered dercums disease.i was unable to get to see my doctor .the symptons i have are pains everywhere  like knifelike pains in m y feet and hands .twinges of pain in my chest and abdomen and feeling weak and tired.also have pain around my left eye,walking is difficult and i cnat walk my dogs as far or cary shopping etc