Dercum's Disease Support Group
Adiposis dolorosa, also known as Dorcum's disease, is a rare disease characterized by multiple painful lipomas that arise in adult life. It occurs most often in obese postmenopausal women, but can also occur in men. The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands. It was first formally described by Dr. Francis Xavier...
Hi all.
My name is Aaron and I had sudden onset of my symptoms about 8 months ago with one solitary painful lump in my left deltoid. It scared the crap out of me and I went to my doctor who said it was nothing. I went to doctor after doctor, saw specialists, went to the er on occasion for the worst pain flares, and watched my comfortable and familiar body begin to become something I did not recognize and could not understand. Initially they were in my left bicep, deltoid, and left chest wall. I got a PA at the Army hospital to listen, REALLY listen to me and examine me with kind hands. She didn't just POKE at my arm and say I was nuts... she agreed it was strange and she'd never seen anything like it. She was the one who finally got me in for a biopsy and an MRI. The MRI was negative which was absolutely mind boggling! How could that be? The MRI techs came in several times during my scans; one with and one without contrast, back to back, to ask me if I could actually PALPATE the lumps. When I showed them where they were the radiologist sent in an RN during my scan to feel them. Geesh. Whatever. So, being told that there was ABSOLUTELY NOTHING on my scan just left me flummoxed. How could that be? My surgeon had the results cc'd to him and when I went in to get the results he was just as amazed as I was. His words were, "Well we know you're not crazy, we can feel them." Hmmm... I knew that. When I met him in the preop for our "date" I had done fair amount of research and I asked him what he thought of the paper I had taken in to him about DD. He said it was rare, horrible, and incurable and he still had hope that what I had might be something vascular. They were not. The biopsy results confirmed multiple lipomas consistent with Dercum's. Fortunately there was one pathologist out of four that had heard of DD and he confirmed that it looked like it to him.
I now have thousands of the damnable things in my body; mostly small but the focal obesity of my upper thighs has begun as well as my stomach. I feel them everywhere... it's scaring me more than I care to say.
I'm now back on the mainland from Hawaii and I'm trying desperately not to lose hope that all of the ground I have gained has been lost. Like so many of you I struggle with the medical community as a whole, excepting the few compassionate and curious doctors who don't know but really really care.
I'm so happy to have found you and to know I am not alone. I hope you have better good days than bad, more happy than sad, and we find a cure soon.
In my research I stumbled across an article about a new cancer drug that is coming online in a couple of years that may help us by eating the protein coating of our tumors. If I am able to find it again I will happily post it.
Hugs to you all.
Aaron
My name is Aaron and I had sudden onset of my symptoms about 8 months ago with one solitary painful lump in my left deltoid. It scared the crap out of me and I went to my doctor who said it was nothing. I went to doctor after doctor, saw specialists, went to the er on occasion for the worst pain flares, and watched my comfortable and familiar body begin to become something I did not recognize and could not understand. Initially they were in my left bicep, deltoid, and left chest wall. I got a PA at the Army hospital to listen, REALLY listen to me and examine me with kind hands. She didn't just POKE at my arm and say I was nuts... she agreed it was strange and she'd never seen anything like it. She was the one who finally got me in for a biopsy and an MRI. The MRI was negative which was absolutely mind boggling! How could that be? The MRI techs came in several times during my scans; one with and one without contrast, back to back, to ask me if I could actually PALPATE the lumps. When I showed them where they were the radiologist sent in an RN during my scan to feel them. Geesh. Whatever. So, being told that there was ABSOLUTELY NOTHING on my scan just left me flummoxed. How could that be? My surgeon had the results cc'd to him and when I went in to get the results he was just as amazed as I was. His words were, "Well we know you're not crazy, we can feel them." Hmmm... I knew that. When I met him in the preop for our "date" I had done fair amount of research and I asked him what he thought of the paper I had taken in to him about DD. He said it was rare, horrible, and incurable and he still had hope that what I had might be something vascular. They were not. The biopsy results confirmed multiple lipomas consistent with Dercum's. Fortunately there was one pathologist out of four that had heard of DD and he confirmed that it looked like it to him.
I now have thousands of the damnable things in my body; mostly small but the focal obesity of my upper thighs has begun as well as my stomach. I feel them everywhere... it's scaring me more than I care to say.
I'm now back on the mainland from Hawaii and I'm trying desperately not to lose hope that all of the ground I have gained has been lost. Like so many of you I struggle with the medical community as a whole, excepting the few compassionate and curious doctors who don't know but really really care.
I'm so happy to have found you and to know I am not alone. I hope you have better good days than bad, more happy than sad, and we find a cure soon.
In my research I stumbled across an article about a new cancer drug that is coming online in a couple of years that may help us by eating the protein coating of our tumors. If I am able to find it again I will happily post it.
Hugs to you all.
Aaron
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
that was a nightmare as he kept saying he could not find it, this was done under local. after prodding and poking for about 5 mins he did find it and removed the thing. i think there could be a fair bit of scar tissue as it does hurt at times, plus i have so many more now.
i also have them in my thighs and i think they are round the hip joints too as i get terrible pains there and after sleeping for about 2 hours wake up in awful pain. if it is not the hips it is the arms. i sleep on a themo mattress and have a body pillow which helps a little.
as i am now 63 and have had them more years than i care to remember i do hope they find a cure for you or prevention would be better.
i have told my family i am going to leave my body to medical research so hopefully it may help someone down the line. a very big hug from me and do take care.
you are not alone it is just we are spread out all over the world, but thank heavens for the internet.