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 Dercum.

0 Online

Need help

I am 30 year old Man from Asia - India .Following is the timeline of the disease :-

Around 20th December 2010 ,I felt lump in my left forearm.There were 03 small lumps in a row .I feel pain when I touch them.

Around 25th December i felt small lump in sole of the feet.It is in the middle of the sole .IT didnt pain .

From 03 Jan,I discovered some more lumps in my Body .02 more in my Left forearm and they are of the size of peanuts and it pains when i touch them.Also i started feeling pain in lump on the sole of my right feet .

Went to Physician he told me that they are lipomas and nothing to worry.Just leave it like that.I even told them that it pains he told me to leave it like that .

Around 20th Jan i started feeling intense pain in the lump on the sole of my right feet and it hurts more in the morning .

I also felt some more lumps in my body behind knees on both the legs which are also painful when i try to bent my Knee .

Went to Dermatologist,he suggested that its lipomas and its better if we leave it like that and if it pains he prescribed me some Pain Killer Medicines.

Around 25th Jan pain was intense in lump on the sole of right feet and discovered new lump on the sole of left feet which is relatively less painful .Also I start feeling numbness,tingling feelingin the right hand fingers .,Also wrist pain in the Right Handand elbow pain .

Please tell me the test which can confirm Dercum Disease.Is this Dercum Disease ?



Dercum's is so difficult to diagnose, because the pain symptoms can come from any number of other diseases (and you should check for them, even though your doctor will likely get tired of hearing you complain constantly.
Lipomas even in Dercum's disease will not all be painful (at least in my case), or may start out painful when growing in and then stop being panful, or vice versa.
A good plastic surgeon can remove lipomas close to the skin surface with very small scars (smaller than the tumors). The lipomas may grow back exactly or near where they were removed,
and also the surgery sometimes seems (to me) to trigger MORE lipoma growths in response to the surgical trauma) other people have reported this too. If a particular lipoma is VERY painful or growing way too big, I have it removed.
No "test" can presently confirm Dercum's disease, the diagnosis is made based on the cluster and severity of symptoms.
Dr. Herbst in San Diego CA USA is good diagnostician and researcher for this disease, but totally overloaded with people trying to get in to see her.]

The dismissal of multiple lipomas plus severe pain symptoms is sadly all too common in the medical community. The only thing i can recommend is when you hear this dismissal, go look for another doctor and qualify the doctor FIRST by finding out if Dr. knows about the existence of Dercums or Adiposis Dolorosa, and don[t bother seeing them if they don[t know about it You will save a lot of wasted money, time, and medical records suggesting you are a hypochondriac or drug seeker. Good luck and best wishes.
Posts You May Be Interested In:
  • nana012

    I have cancer

    I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
  • irishwriter

    come unwind in the bp lounge

    theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??