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Painful fatty tumors = Dercum's Disease

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Old 10-14-2007, 08:56 AM   #1
Join Date: Oct 2007
Location: CA, USA
Posts: 1
fighter52 HB User
Painful fatty tumors = Dercum's Disease

Dercum's (also called Adiposa Dolorosa) is a rare disorder discovered in the late 1800's. Lipomas aren't normally painful but with Dercum's they are. I have been suffering from it since the 1980's and it wasn't until 2005 that I finally diagnosed my illness. I had originally been diagnosed with fibromyalgia. I have since seen every type of doctor there is and found a cosmetic surgeon who did a few surgeries to remove the lipomas causing the most pain which did give me some relief. New ones emerge all the time. I tried liposuction which seems to make things worse. There is a Dr. Karen Herbst, an endocrinologist at the VA hospital at University of California, San Diego who recently was awarded a grant for a study of this debilitating malady. The study has only started in the last month or so. I am hoping and praying she can find some way to stop or at least slow the production of these lipomas or best of all learn what causes them. She is in the process of developing a blood test to identify the disease.

I have a lot of pain with hundreds of these tumors in my head, neck, back, arms, legs, feet,...well there really isn't any place on my body that doesn't have them. I know that I feel better when I maintain a regular exercise routine but it is very hard to get started with it since it is so painful to get moving in the first place. My worst pain is actually sitting or laying down as the large lipomas press on nerves and cause burning, stinging, aching and throbbing pain.

I always know when a new one is forming....a little spot will begin to itch and sting then burn then ache... when you touch the spot it feels warmer than the skin around can feel a little lump and it grows and you know the rest.

I am trying to bring attention to this disease by joining every website that will allow me to mention it. I tell my friends, my dentist, radiologists, anyone I can so that I might shorten someone's search for an answer if they develop this illness.

Last edited by moderator2; 10-14-2007 at 10:54 AM. Reason: Please do not post websites except as described in the posting policy section titled "How to share information".

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