- CASE FILE
Dercum's disease is extremely rare characterized by multiple, painful growths consisting of fatty tissue (lipomas). I have hundreds of them!
ABOUT THIS CASE FILE
For many years, I've had many lipomas (lumps of fatty tissue under my skin). Some of them are small (pea size) and I've had them as big as a golf ball. Years ago, they weren't painful - just inconvenient. I had a few of the lipomas removed surgically due to their size (golf ball) on my arms. Those biopsies came back that they were simple lipomas, not cancerous. For at least the last ten years, the lipomas have become quite painful. I currently have HUNDREDS of lipomas in my arms, stomach, thighs, legs, hips, ribs, and buttocks. These lipomas seem to be pressing on nerves. Since they are everywhere, it is impossible to sit, stand, or even lie down for very long without being very uncomfortable.
Other symptoms that I have include insomnia (only sleeping a couple of hours a night), extreme chronic pain, chronic headaches, chronic migraines, muscle pain, skull pain, feet pain, and ankle pain. I hurt pretty much everywhere ALL THE TIME. We have not found anything that helps with the pain yet. I use ice and heat to help with the pain. I have an ice cap that I wear on my skull. I have tried MANY different medications to try to ease some of the pain and symptoms.
I have also been diagnosed with Fibromyalgia, Psoriatic Arthritis, recurring kidney stones, tenitis, prediabetes, thyroid nodules, migraines, vaso-vagal syncope, gastrointestinal issues, and had a pseudo-aneurysm in my vertebral artery in 2009. I have also had half of my thyroid removed and we are watching a nodule on the other side. The lining of my uterus is too thick.
I've seen so many doctors - neurologists, sleep doctors, rheumatologists, otolaryngologists, gastroenterologists, surgeons, orthopedic doctors (feet, neck, shoulders, and back), endocrinologists, and dermatologists.
I'm certain that the lipomas are characteristic of Dercum's Disease. Not many doctors know about Dercum's Disease. There is one doctor that has done tons of research, Dr. Karen Herbst. ONE DOCTOR!!!!! This disease is so debilitating and painful. It's very frustrating that there isn't more being done by more doctors to help people with this disease. My pain became so bad in the last few years that I had to leave my career as a classroom teacher. I am able to teach part-time from home (virtually) but not without a lot of pain. Please help me get my life back and bring some hope to this seemingly hopeless situation. I welcome any help that you can provide and would be eternally grateful!