This is all new to me

I went online to find out why I have so many painful lipomas on my arms, ribs and back. I came across Dercums disease. I looked at the symptoms and read the articles about it and it seems like I might have finally found out what is wrong with me. I have had so many doctors look at me like I am a fat hypochondriac. I know that this pain isn’t in my head. Is there anything I can do to get them to really listen? Please help me. Feel free to read my story to see some of the problems I have faced.


I tried to read your story but your profile is currently private, so no one can read it. I think we have all been treated like fat hypochondriacs at one time or another. (Well, except maybe those who have been spared the obesity) I would suggest you check out Dr Herbst’s website. It is You can print out some information there and it also contains contact information for Dr Herbst. If you will write me privately and give me your email address, I can send you a copy of her research article which was publish in an Endocrinology magazine last December.

When we take information we found on the internet to a doctor we are generally met with rolling eyes and are brushed off. This article was published in a respected medical magazine and might get more respect. Reading it even counts as continuing education for them. Hope this helps you. Ask all the questions you like. We will all try to help you.


cgold, I’ve been trying to find out about my knots since December, have asked 4 specialists and my PCP. The same thing happened, with internet research and email to Dr. Herbst, I finially felt i might have an answer. My PCP has been great and very receptive to what i’ve found and what Dr. Herbst recommends. In fact, I wrote a letter to a specialist In KC that I saw, over 4 hours from where I live, and told him that assuring me I had nothing serious going on, as was his recommendation to my PCP, wasn’t going to help me. I told him just because he wasn’t able to diagnosis the problem, he shouldn’t just assume it was nothing. At least he didn’t tell me all I needed was to exercise!

Kathieh, I would like to know who that KC specialist is so I don’t go to him. I live in the KC area. Please write to me privately rather than risk a lawsuit by posting his name publicly. I’d dure appreciate it.