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...

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deleted_user 11/19/2008

Hi all i have read a few of your posts and thought that joing your group would help me come to terms with having dercum's and poss give me some answers to questions i have.
I was diagonosed in september by my local GP who had seen dercum's once before in a 70 year old lady and thought my symptoms fitted but that a far is i have got my gp doesn't know of a consultant that deals with dercum's in the uk and he doesn't know how to treat it.
So i'm no better off than when all this started in july.
Can any one give me any names of consultants in the uk that have actual heard of dercum's.
It is really good to know i'm not on my own with this thanks.

deleted_user 11/19/2008

hi scotty
have you asked to see a reumotolagist (cant spell)
i think thay are more likely to have come across dercums
then again mine asent herd of it but is looking into it for me

deleted_user 11/19/2008

Thanks i did suggest this to my gp and he wasn't to keen on the idea but if that the way to go will suggest it again.

Thanks for you reply.

deleted_user 11/20/2008

hi it as took me 2 years with constant pain and have not been diagnosed yet fibro/dercums as been mensioned, have had camra up and down xrays mri and have been realy depressed you will have to tell or demand to see specials the ammount of times ive been told its all in my head is untrue blood ive had more blood tests than dracula
good luck
david

deleted_user 11/20/2008

Hi David
Have had the blood testd and been to renal consultatns as they thought it was my kidneys at first.
Have nagged my gp silly about mri but he seems reluctant? he is now saying he will refer me to plastics and another consultant and se if they can shed some light on the situation.
thanks
scotty77

deleted_user 03/06/2009

RESEARCH: DR. KAREN HERBST. DR. HERBST IS ONE OF THE ONLY SPECIALIST ON THE WEST COAST THAT STUDIES DERCUM'S DISEASE THAT IS KNOWN TO BE A NATIONALLY RECOGNIZED AND RARE AUTOIMMUNE DISEASE. YOU CAN FIND THIS DOCTOR ONLINE AS SOON AS YOU LOOK HER UP! SHE IS LOCATED IN A VA HOSPITAL IN SAN DIEGO, CA.

deleted_user 06/28/2009

Hi , I have been diagnosed with Dercum's. I one day during a flair googled my symptoms I put that my fat hurt that is how I came across Dercum's. after reading the symptoms I realized this is what I had been suffering withas a child it did not get diagnosed till recently because I didn't know how to desribe the pain in my thighs and knees since I was a child. Doctors were looking for injury to muscles , rheumatoid etc. when I found it I faxed it to my doctor and told him to read it that it was important to me. I would discuss it at my appt. which I did and I told him why I thought I had it. He told me it was possible. I then went to adermatologist and asked them to biopsy some of the painful areas, which they did it came back as lipomas. when this was happening I was being seen at pain clinic. The biopsies (2) that they took came back as lipomas. but also I had pain relief in the area that was removed one area I have burning now because it was attached to nerve and nerve must of got damaged with removal. I was sent to surgeon to remove lipomas. He said I had lipomas but also lipomatosis across my obtratutor nerve and spread all through my thigh. he would not remove because they reappear and it would leave nasty scars. this just confirmed my diagnosis. so My doctor diagnosed me with dercum's disease. be you own advovate try to educate your doctors aftereducating yourself do research find if you meet the criteria for dercum's then concentrate on treatment. Morphine helps my dercums I can work 40 hours aweek. I have medication for breakthrough pain, muscle relaxer, and cymbalta plus trazadone for sleep. I have now started acupuncture advise from pain management and rheumatologist. I have fibromyalgia secondary to dercums. I had to educate the one doing my acupuncture about dercums. I hop this may help Elch

deleted_user 07/01/2009

pLEASE READ MY MULTI TREATMENT APPROACH IT WORKS FOR ME YOUR DOCTOR COULD GIVE IT A TRY. i READ EVERYTHING ON DERCUM'S AND I WOULD EDUCATE DOCTORS WAS SEEING BY FAXING OVER a BROCHURE I MADE.i ASKED THEM TO READ IT BEFORE I CAME THAT IT WAS IMPORTANT TO ME. AND THEY DID.i WILL REPLY AGIN BUT WITH COPY OF THE BROCHURE. PLEASE TRY MY TREATMENT . THE MORPHINE I TAKE IS MSCONTIN. SORRY I HAD CAPS ON WHEN I REALIZED, IDID NOT WANT TO REWRITE AGAIN.sorry I do apologize

deleted_user 07/01/2009

If you give me your email I wll send you brochure on dercums to give to others that don't understand you can Email me at echittick@verizon.net if you or others would like it. Elch

deleted_user 03/08/2014

I am researching natural immune boosters, since I saw 1 med article describe Interferon as being effective for 2 patients. Interferon drugs can cause liver damage,etc, so looking naturally.....

http://www.chamberlins.com/ns/DisplayMonograph.asp?StoreID=2CB86C7B36BE4CFD914079104818C49B&DocID=allergy-interferontreatment

deleted_user 03/08/2014

Researched Resources on NIF site:
http://rarediseases.info.nih.gov/gard/5750/adiposis-dolorosa/resources/5

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