Dercum’s Disease: Let's create a support group

Hiya! 39w with Dercum’s disease here. First lipoma removed from forehead at age 20. Would be very interested in targeted support group — especially to exchange info on clinical studies/trials and specialists!

…the one bothering me the most atm is growing between my neck and shoulder. Doc says it’ll be difficult to remove because it’s intramuscular. I’d be super grateful if anyone can share surgeon contact they’ve used to successfully remove an intramuscular lipoma! 🙂

Hi! Praying you are able to find someone to help… Would you mind to share how you were diagnosed? I had one endocrinologist grab the under part of my arms, compare the feeling of them to “beanie baby granules” and declare I had Dercum’s. She didn’t put it in my chart notes or anything, but she got real excited and told her student that was with her this was very rare… told me not to bother seeking treatment, but this was the cause of my chronic pain… no one else has confirmed the diagnosis l, but it has stayed in the back of my mind ever since…

Perhaps add the Fat Disorders Resource Society to your sources. I worked with Dr Karen Herbst in 2006-2010 to form the non profit and was it's founding President. This non profit has annual national conferences open to the public with many specialist speakers and workshops focusing on Dercum's Disease, Lipedema, Madelungs Disease, and Familial Multiple Lipomatosis. There is a conference coming up next month in Atlanta. Dr Herbst is now viewing DD as a loose connective tissue disease. (And yes, I have DD too.)

Hello @sll108, Welcome to Connect. Thank you for the resource link. New members are not allowed to post links for a short period of time to prevent spamming by advertisers. Since your reference is obviously a valuable resource for members I thought I would share it here for you.

--- Fat Disorders Resource Society: https://www.fatdisorders.org/.

Here is the link to the upcoming conference April 14-16th, 2023:
https://www.fatdisorders.org/events/fdrs2023.
It looks like members can attend the conference virtually. Are you planning to attend the conference?

Ironically, the main day of the conference (Saturday) I'll be in St Louis for my daughter-in-law's baby shower that same day. So unfortunately I'll be at the shower instead!

I have had a lipoma on my left leg and two operations that did not get rid of it, so it is still there!

Hi! I am awaiting a MRI to rule out Dercums disease. I found my first “limpoma” last year. It was a little tender but no bother. GP diagnosed. Starting in April I have been having constant fatigue, bloating, abdominal pain, nausea, lymphnodes swollen and more.. I find new “lipomas” everyday all over my abdomen. I lost count after 23. Some are round and firm and others are oval and almost chain like. I am swelling, and woke up with mild lymphedema in my arm today. I am really anxious about this diagnosis with how fast I have declined and little known about it. Do you have similar symptoms? Did your symptoms show up this quick and progress so fast? Also, any abnormal labs? I have high WBC (16) and my absolute lymphocytes have been running between (5:7-6.8)

Welcome @karie608, There is a post earlier in the discussion by @sll108 that references a website and also has a video that might be helpful for your questions - https://connect.mayoclinic.org/comment/821692/.

Here's the link to the website - https://www.fatdisorders.org/dercums

When is your MRI scheduled?

Hi @johnbishop my MRI is scheduled for 5/23. Thank you for sharing that information I will be headed there now. It is really hard to find info about this disease, I appreciate it!

I truly believe I have dercums yet I am still waiting to get a diagnosis. I would appreciate any helpful tips to deal with the pain and flare ups.