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

@madvzebra

Thank you for sharing your diagnoses. It’s interesting… I have dercums, EDS, and thyroid issues but not diagnosed with most of the other conditions that you have, whereas my sister does not have dercums but has almost everything else you listed. From a science/ gene standpoint this is very interesting to me.

Hello! New to this chat in Dercum’s. I have been diagnosed. So many lipomas. Seems like some of the smaller ones are giving me more grief. I also have fibromyalgia. Going to have several of the painful lipomas removed in a few weeks.

Things that have been helpful for me is stretching, yoga and daily walks. Movement really can be difficult but overall it seems to help. Plus I get my vitamin D outside. No sugar and limited processed foods. And I actually think therapy/counseling has helped me. (Interesting). Heating pads are a godsend. Sorry for everyone in pain. Looking forward to connecting.

I'm in the Chicago area and offer liposuction for lipedema and Dercum's.
Feel free to message me.

Hello! I'm new to the group and not sure I'm posting this correctly to be honest. I was just diagnosed with Dercums after years of struggles. I was diagnosed with Sjogrens about four months ago. I had two heart attacks in June of 2022 with five stents. I have heart disease, high blood pressure, and atherosclerosis. I also have been diagnosed with vascular insufficiency. I have low vitamin D and anemia with high eosinophils being investigated. I had an attack of thyroiditis in my late 20s but my values are within normal limits now. I have three benign thyroid nodules. I have a meningioma that's being monitored. I have lipomas and/or inflammation in my stomach and retroperitoneal that are being monitored. I'm in pain all the time. I'm currently prescribed Lyrica, Cymbalta, and Plaquenil. Gabapentin didn't help. The lipomas are growing at a rapid rate. Ihave them on my feet and neck as well. Some of the most painful ones feel like unincapsulated growths over bone. The small encapsulated ones in between my joints are very painful and seem to make the joint stiff and even stick. I have them on my butt and perineal area as well so sitting, standing, and everything else makes it worse. I'm allergic to Kenalog. All opioids cause nausea, vomiting, and severe constipation. My Rheumatologist is communicating with my dermatologist about trying a medrol for pain. No one in Utah has experience with Dercums except one, and he's not accepting patients. I love my team but I feel like I'm a guinea pig.

I’ve also been diagnosed with Dercum’s. I’m having to deal with more distressing symptoms from my other autoimmune conditions, but I’ll get back to using the leg sleeves with the pump when I’m up to it.

Welcome, @nofanofsjogrens. I take it from your creative username that you are also dealing with Sjogren's. You might also be interested in this related discussion:

- Sjogren’s Syndrome – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/sjogrens/

Find more using the search tool https://connect.mayoclinic.org/search/discussions/?search=Sjogren

I'm tagging fellow Dercum members like @hikinggirl10 @lumpylady74 @kgutowski @kinda so you can connect.

I’ve been doing my own research for years on the cause of my pain and only recently was pointed in the direction of lymphedema, lipedema, and Durcum’s. I do think I have DD. But how to get a diagnosis when it is so rare that many doctors haven’t heard of it. I do live in Minnesota. Are the doctors at Mayo who specialize in this at all??

Hi, I'm new to this group and seem to be one of the many trying to get diagnosed. I currently live in northern Idaho, but I'm returning to Arizona this summer to be closer to friends and family and hopefully medical providers who can help me. A previous post stated there's no one at Mayo in Arizona who treats Dercums. Does anyone know of any other doctors in the Phoenix area? I do know Dr Karen Herbts from Tucson is no longer seeing patients as of last month, as she is devoting her time to research. There is a new drug for Dercum's which has been fast tracked by the FDA, and I'm hoping that she's going to be involved in the trials to make it available to those of us with the condition. It is an injection into the lipomas. There is hope, hang in there!

@ellenbret, you may wish to contact Mayo Clinic in Phoenix to inquire. Here is more information about treating lipomas and care at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/lipoma/doctors-departments/ddc-20374475

To find out more, you can contact Mayo Clinic either online or by phone. See details here http://mayocl.in/1mtmR63

Is this the new drug you're referring to (CBL-514)?
Novel Fat Reducing Drug Gets Fast Track Status for Dercum Disease https://www.empr.com/home/news/drugs-in-the-pipeline/novel-fat-reducing-drug-gets-fast-track-status-for-dercum-disease/

Yes, that's the article I'm referring to. I sure hope it makes it through trials and available soon!