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

Posted by vowelmistress @vowelmistress, Jun 13, 2022

I am having pain in my feet and ankles. I do have dercum’s and I am wondering if the lipomas in my legs can cause this? Also are there any surgeons in the Eau Claire area who specialize in liposuction for dercum’s patients?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

jlminsac | @jlminsac | May 23, 2023

I believe I have Dercums Disease. I'm riddled with internal lipomas and progressive pain among other symptoms.

mkmenge | @mkmenge | May 24, 2023

In reply to @jlminsac "I believe I have Dercums Disease. I'm riddled with internal lipomas and progressive pain among other..." + (show)

I have same pain & symptoms in both thighs..area of lipomas are very tender. Haven't been formally diagnosed however.

jlminsac | @jlminsac | May 24, 2023

I am seeing a dermatologist Friday. I don't really want this diagnosis but it sure explains a lot of my experiences. I am not officially diagnosed either but seem to be headed that direction.

carol1024 | @carol1024 | May 26, 2023

I know if you can get there, the Dr on TLC removes lipomas. Sandra (can't remember last name, don't get TLC anymore) but she's known as Dr pimple popper. You might even wind up on TV. I know one episode, she removed about 90 lipomas, most were small and one lady had about 20 removed from her arms because they were very lumpy from the lipomas, about the size of a 50 cent piece. It's Sandra Lee I think. Best of luck.

jlminsac | @jlminsac | May 27, 2023

In reply to @carol1024 "I know if you can get there, the Dr on TLC removes lipomas. Sandra (can't remember..." + (show)

Thank you.

ldavis1111 | @ldavis1111 | Jun 19, 2023

What kind doctor should I see for LIpomas? I have MCTD and see several doctors at the Mayo in Jacksonville

mandalakoala | @mandalakoala | Jul 4, 2023

Formal diagnosis a year ago. New lipomas in neck and shoulder showed up last week. Pain felt like someone poured concrete in my body and it hardened.

Did some reading about pain relief and found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8702289/

Ordered a $40 TENS/EMS on Amazon, and it’s helped some.

pianist3 | @pianist3 | Jul 17, 2023

In reply to @colleenyoung "Welcome @iamrare2, I love the username. As you know Dercum's disease, familial multiple lipomatosis (FML), adiposis..." + (show)

Hi, thanks so much for this info! I have been struggling with many of the symptoms of Dercum’s, and would like to be a part of this group, if there is going to be a separate group for all of us dealing with this. I have also had other things going on recently, but just typing in autoimmune diseases and coming across Dercum’s is very helpful. I am hopeful to feel even better with support, doctors at Mayo and healing foods and exercise. Thanks so kindly! Have a wonderful day! Mia 🙂

pianist3 | @pianist3 | Jul 20, 2023

Hi, everyone!

Does anyone out there have Dercum’s disease? It has a lot of symptoms and just wanting to reach out to others and see how I can help. Sending you all healing ❤️‍🩹 prayers, thank you 😊!!

Becky, Volunteer Mentor | @becsbuddy | Jul 20, 2023

In reply to @pianist3 "Hi, everyone! Does anyone out there have Dercum’s disease? It has a lot of symptoms and..." + (show)

@pianist3 Hi and welcome to Mayo Clinic Connect! There is currently a discussion on Dercums disease. Just follow this link
https://connect.mayoclinic.org/discussion/dercums-disease/
You may want to ask your question in this established group.
Do you have Dercums disease?