Dercum's Disease Support Group

Hiya there,
Unfortunately unless you live near San Diego there isnt anyone we can turn too. My GP basically googled painful fatty lumps and dx me with DD. I am just controlling my pain with different pain meds, and had some really painful lipomas removed.

Good Luck with your search.

Michelle

Hi Michelle, thanks for your reply. I live in Northern California so San Diego is a bit of a haul. I would have thought Stanford would have been a good pick. This particular disease is just awful. How long have you had dercum's? I am going to see a Dermatologist next week in the hopes they might know something. I hate to think of surgery as the only solution, and have heard that the pain comes back after surgery..is that true? Best of luck to you and thanks for the post

Hi
I was diagnosed by the surgeon removing some painful lumps and since then have seen an endocrinologist and dermatologist. Luckily the latter had seen dd once before so she knew a little about it but not much.But most docs do the google thing I have found. Good luck, like all of us with dd I know just how it can be. But keep positive. M

Thanks Mellr, I am hoping I will soon find out something. I know that it can be a long road but I met with my Dermatologist for the first time today, and guess what, she knew about Dercums. OMG. I could not believe it. She is talking about a biopsy as the first step as she says it could also be something else. So your note could not have come at a better time. Thank you so much, Terry

when I read the symptoms I faxed a copy to my doctor, asked him to read it. I told him why I thought I had the disease. he told me it could be possible but there is no treatment I was already going to pain manag. I made an appt. with the dermatologist told her about lumps and asked if she could biopsy a few. I told her where my pain hurt most. that is the area she biopsied. one place lateral thigh pain was gone I thought it was from arthritis of hip but it was lipoma compressing on the nerve. the other biopsy on inner thigh same thing but more invovled when she biopsed that area it was on the nerve now I have constant burning there. Biopies cme back as lipomas. Dr. diagnosed me with Dercums and I ahd a long history with pain. I went to the surgeon he told me I had lipomatosis everywhere in my upperleg. I have other places on my body so he just confirmed it. I also have alot of assoicated conditons. I made up a brochure and sent it to my rheumatologist or ask him to look it up when I got there he knew what Dercum's Disease is. I made a brochure because the PCP where I work wanted to do a cli/education meeting on dercum's . If you would like that brochure let me know and I will get for you. also DR. Herbst has researched ht e disease and had recieved grants to do so. go on www.lipoma.org and her website and email is on there and where to contact her so your physician can do so. I hope this helps Elch