What is Dercums Disease
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 postmenopausa...
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I've been sick off and on for over ten years now. I try to ignore it most days but more and more it gets me down.
It all started right around the time I got meningitis twice within one year. Since then, a bunch of unexplained problems. I do have a real bonafide problem found on xray concerning my spine but besides that, I'm probably brushed off as a hypochondriac. Anyway, diagnosed with fibro about 6 years ago. Was seeing a physical therapist who would ask me where I hurt the most and concentrate on that area once a month. After she got to know me, and eventually I complained of the bumps, she told me she had many fibro patients and never felt anything like it. Her boss, the dr. also said the same thing. They encouraged me to see my primary about it but at that time I was tired of being tested, poked and prodded. So I kept the dx of fibro because my dr. at that time treated me with pain killers and therapy. It's all I had energy enough for because I had been in and out of the dr.s and hospitals for long enough. Now, it's years later and these bumps flare up more often and they hurt more than ever. I looked up "painful lumps under the skin" in my search engine (googled it) and came across this article here http://www.arthritis-treatment-and... I took it to my dr. and she didn't seem to know anything about it but she actually referred me to a rhuematologist. But I didn't go, because I couldn't budget the cost of our deductible into our budget. I still don't know how we're going to afford seeing a specialist or a bunch of testing or appointments, but after this year is up, I'm going to go ahead and take her up on it. If anything, it would be nice to have a dx and it would be nice to have a pain reliever once in a while... So my symptoms are painful lumps under the skin, and mine are mostly around the ribs, my arms and hips. They are usually on the outer arm and outer hip. They vary in side, they come and go but never completely go away. They swell up, then it goes down and the lumps are harder after the swelling goes away. It's very, very very painful and I am so happy my children are not toddlers because I couldn't imagine a toddler climbing on me. Sometimes one of my teenagers will pull on my arm for one reason or the other, but they've learned to try to avoid touching me. It's kind of sad. My youngest step daughter and stepson hug me more often, and sometimes lean on me and if they lean on these bumps, they hurt so much. I bruise easily when I bump into them. It's hard to sleep sometimes because the bumps on my ribs and outter hips hurt with the pressure. I have a pillow top mattress but after you lay on them awhile it doesn't really matter how soft the bed is, it still hurts. I remember when I first asked a dr. what the lumps were on my ribs, he felt them and said it was fat. I felt really embarrassed because I am overweight but I wasn't always overweight. So after that, I never asked another dr. what the bumps were again, when they started to pop up on my thighs and arms, I just concluded that all "fat" people hurt.... Posted on 07/25/09, 06:07 am |
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Hello, Painstrai nice to meet you. You seem to be on the right track. It is hard to get a diagnosis when physicians have no knowledge about the disease. I did what you did sort of. I printed it out asked the Doctor to review it and told him it was important to me. I told him I would explain at the visit. Then I made an appointment with the dermatologist and had them biopsy areas where I hurt most. they did two biopsies one lateral thigh relieved pain instantly. biopsy came back lipoma so did tho other on inner thigh . that area on the inner thigh now burns constantly this pain I had was the was before it must be attached to nerve because it burns now which meeans injury to nerve. Dermatologist seem to be suprised that it was attached to nerves. went back to my PCP and he diagnosed me with Dercum's. My rheumatologist I went to diagnosed me with fibro myalgia secondary to dercums. and he know What dercum's was. I also called his office to tell them I had Dercum's before the visit. I would learn what youcan about this disease find pain management and treat the symptoms. check what others are doing to give you an Idea. could be pain meds along with water therapy, acupuncture no physical therapy makes it worse. I take cymbalta etc... try what's best for you. good luck I hoped I helped some. Elch 
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