Adiposis Dolorosa is a rare disorder causing painful lipomas.
Hi i am new to this site, and also suffer from Dercum's. i have recently had 20 lipomas removed and more have grown bak but the pain is worst in my inner thighs. i have other areas that cause pain but for me that is the worst location. i am having more removed this month. the dematologist tells me I am his lipoma girl. It is hard to convince others about this real disease. there is a doc who says he knows about it but when he talsk you know he doesn't that can be irritating. and trying to convince others how painful this disease can be is awful. we should not have to go through this but we must if we will help ourselves or others down the line. i take medication that helps with the pain but some days it's not enough. i have spoken to the doctor who specializes in dercum's and she is great and understanding but she lives in San Diego so i cannot go there. but if it comes down to it I will travel just to have a consult with here. she is willing to look at my pathology when i have it sent to her. I read that people with this disease have larger fat cells than in others without this disease. It is sad that people will just see the fat and not the disease that caused the fat. I am overweight and have typeIII Dercums. I have a set of doctors who are treating me for this disease and I am trying to get the word around as much as I can. well i hope to chat with other members. Till the goodnight!
Hi- I have been dealing with unusual leg pain now for about 5 years. I am 48. I am also just finishing treatment for breast cancer. For years I just assumed that I probably had fibromyalgia, because my older sister suffers terribly from it. But the small lumps in my thighs have grown, and at times swell so much that walking is difficult. The pain is sometimes unbearable (usually at night), and I cannot sleep without the aid of a pain killer. I believe I have found my problem, and intend to take the information to my physician. If anyone knows of anything that can bring relief, that is not a narcotic, please let me know. Please email me at firstname.lastname@example.org. Use A D in the subject so that I wont discard it. Thanks so much
I have the reference for the medical survey that I mentioned earler. Go to www.lipomadoc.org , then click on "Adiposis Dolorosa" on the menu on the left of the page. Then scroll down to the references. In reference #2, which is the citation for Dr. Herbst's article, there is a link for a .pdf of the article itself. I encourage everyone with this condition to print out the article, read it, and take it to your docor(s) and beg them to read it. It is the best, most complete survey about this condition. All the other articles that I have found contain misconceptions and errors, such as the assertion that lipomas cannot occur on the feet: silly!
Thanks for responding....yes, I am a middle aged, overweight drug seeking woman..LOL. I am allergic to NSAIDS, so that has put kind of a damper on what I can take for pain. I am currently taking vicodin, and have been for about 7 years. That has been for the fibromyalgia and osteoarthritis pain.....and for what I now believe is the dercums. I realized that most of the pain started with the lump (louie is it's name)..LOL I was diagnosed before that with chronic fatigue, as I have extreme fatigue and weakness that followed a severe flu. It was like I could never recover. I was in bed for about a year. Then I got a little better, but the pain started. The pain has been progressing. As I read through the symptoms of Dercum's, it was like reading my life story. The other interesting aspect of this, is my mother has developed lumps in her upper arms and now shoulders that are very painful....she is 90, but they started some years back. she got the same thing...those are fatty tumors, but are not usually painful....so no further action was taken. Now I read that this is hereditary, through matriarchal lines. My doc has always said that the fibromyalgia was kind of atypical. Have you had any imaging done to find the lipomas? Or, I guess I would be interested in your story.....you can email me if you would like...email@example.com. Just put dercums in the subject so I will know not to erase it......if anyone else would like to tell my their history with this illness, please do...I also have lots of questions....
Visit www.lipomadoc.org. (might be .com??) This site is run by Dr. Karen Herbst, a research endocronologist, who has conducted a very detailed, accurate medical survey on Dercum's Disease. This survey is the best, most accurate and most comprehensive article on this disorder that I have found. The results of this survey are on her site. Print it out and take it to your doctor!!!!! Chondromalacia of the knees and irritable bowel disease are very commonly associated with Dercum's (I have both!) Fatigue and muscle weakness are also common. Getting a diagnosis is extremely helpful. For one, it makes doctors pay attention to your symptoms instead of assuming that you are a fat, middle aged crazy woman seeking pain meds (I am not assuming that you are!). For another, it helps you learn how to take care of yourself: lots of rest, prescription NSAIDS for pain and flareups, and a very low carbohydrate diet are extremely useful.
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