@colleenyoung Thank you for your response. I think that your question of how long have I been living with Dercum's? is a good question. Honestly I can't answer that until I answer a more important question of how long did it take me to get the right diagnosis?

I was 17yrs old when I found the first lump. Through out my 20's I noticed more lumps began appearing in my arms and upper legs and becoming painful. At 33yrs old I showed them to my primary doctor and who told me that they were lipomas (fatty tumors) and that they were nothing to worry about and that they shouldn't cause pain.
After many years complaining about the pain I was in I was diagnosed with Fibromyalgia. In 2004 and with a new doctor and with more lipomas my new doctor agreed that I needed to see a surgeon. My first surgery I had 12 lipomas removed from my lower arm. The fatty tumors removed help ease some of the pain around the area. My 2nd surgery 28 were removed and it was discovered that I had 2 different types of lipomas. My 3rd surgical removal was 42.

In 2008 I realized I needed to find out what exactly was going on with my body myself. I started researching lipomas and found much information that I gave to my doctor. He was not in agreement with what I found,he told that nothing was wrong with having multiple fatty tumors. I felt so much anger that he wouldn't listen to me or read the information. I left the office crying never to see him again.

Once again I had to find a new doctor. After meeting my new doctor he was the answer to my prayers. He was interested in my case, he listened and he read the info I had researched. He referred me to different doctors to rule anything out. He sent me to a dermatologist at our local University Hospital which also is a medical research facility. It was there that I got the diagnosis of Dercum's Disease and familial multiple lipomatosis (FML). I finally had answers about what was wrong with me but not how to treat it.

I have multiple painful lipomas in my arms, legs, thighs, groin, hips, knees, shoulders, upper and lower back, my stomach and breast. I suffer chronic pain,fatigue, muscle weakness, joint pain and other symptoms. I have had several surgeries with 167 removed. I have 3 different types. It runs in my family. My mother has them as well as 3 brothers,a niece and my son. No one else in the family has Dercum's or as many as I have. Some have had to have them removed.

Colleen, as you can tell by my story I have lived with Dercum's years before my diagnosis. Getting a diagnosis is not easy and treatment is even harder. With the mindset of primary physicians regarding lipomas as simply fatty tumors, nothing to worry about and/or the belief that they don't cause pain can hinder the fact that research is needed. Lipomas, DD, FML, will
continue to be rare until primary doctors start to report patients who suffer from this to CDC, Nord or others who need to know about us. We are rare but there are many more out there!

Hi, thanks so much for this info! I have been struggling with many of the symptoms of Dercum’s, and would like to be a part of this group, if there is going to be a separate group for all of us dealing with this. I have also had other things going on recently, but just typing in autoimmune diseases and coming across Dercum’s is very helpful. I am hopeful to feel even better with support, doctors at Mayo and healing foods and exercise. Thanks so kindly! Have a wonderful day! Mia 🙂