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not diagnosed but I think I have this.

maryla Message
28 May 2009, 02:32 AM

Hi. I hope by starting someone else will join in. I found dercum's syndrome one night while surfing the web, and it explains so much of what I have been experiencing. For years, I have had a very painful lump under the front of my rib cage. I have had doctors tell me it is a lipoma, but that they don't hurt. I recently had problems with my knee. The surgeon did arthroscopic because she said my Hoffa fat pad was very swollen. There was some strange tissue in the middle, that they said is PVNS (another rare illness), but now I wonder. I brought all the information on dercums to my doctor today, and he is looking it over. I also have fibromyalgia, chronic fatigue, irritable bowel syndrome, and very painful lumps in my rib cage area, hand, knees, and upper thighs (almost by my waist). So, not sure what all this means, or if there is anything that can be done even if I get the diagnosis. I am interested in hearing any one else's story about your experience with it.
BDcouture Message
28 May 2009, 03:26 PM

Visit (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.
maryla Message
28 May 2009, 10:07 PM

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 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 can email me if you would 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....
BDcouture Message
2 Jun 2009, 06:32 PM

I have the reference for the medical survey that I mentioned earler. Go to , 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!