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

Hi everyone ~ I'm a 52 year old woman and I was diagnosed with Dercum's this year. My incredible PCP suspected it and sent me to Mass General in Boston, where the diagnosis was confirmed. I've had one painful lipoma in my thigh removed and I have more lipomas in that thigh and in both shins. My doctor at Mass General can send me to pain management/dermatology/surgery for the lipomas but as far as everything else that seems to come along with Dercum's, they don't offer much.
I've found some of the Facebook groups helpful but I would love to see a support group here. I'm trying to pace myself with the amount of information I consume but I see so much of myself in so many of the posts I read! Strange medical issues have been plaguing me for years and while I am grateful to have a Dercum's diagnosis, it is also frustrating, as everyone reading this already knows. I do love research and putting together the pieces of a puzzle but it feels like we're all out here doing this on our own.

@colleenyoung - any clinical trials sites in Canada? Specifically in Ontario?

@rashida, you might check out Clinical Trials Ontario (CTO), https://ctontario.ca/ an independent not-for-profit organization. It was created with support from the Ontario Government and works with research ethics boards (REBs) and institutions across Ontario to ensure the highest ethical standards.

@colleenyoung Thank you!

Hello! I am new to this group.
I was diagnosed 11 years ago with Dercums and painful lipomas are increasing or just getting more painful.
For example sleeping on either side has become challenging due to pain waking me up 1-2 hours and then it is just continuous flip flopping.
Sometimes topical analgesics help.
Does anyone have any Dr suggestion in the DFW area that has some knowledge of the disease? Thank you!

Hi, I've written a few previous posts in this site regarding Dr Karen Herbst in Tucson. I was diagnosed by her a few months ago. There seems to be a very close connection with Mast Cell Activation Syndrome. Dr Herbst said that mast cells are causing inflammation in my small blood vessels causing them to break open and leak, with the contents creating lipomas and fibrosis. I too am a side sleeper and have a lot of trouble because of pain from lipomas on my hips. Dr Herbst will be researching a new medication, an injection into the lipomas to dissolve them. I don't know when she's going to begin this research, but there is hope! Take care.

Hi all, I was just diagnosed with severe liver fibrosis. My liver doc is investigating the cause, but I have read that Dercum's can cause fatty liver which is a precursor. Just wanted to share, as liver problems can go unnoticed for a long time.

Hi, I am new to this site. Two years ago I felt a lump in my left upper arm. Because I am a 20 yr, stage III BR CA survivor I immediately thought soft tissue sarcoma, so my oncologist ordered an ultrasound of the area. Test came back as a lipoma. Since then I have developed many more of these lipomas so I will be talking to first, my PA and then my Rheumatologist about Dercum's disease. I would like to have a MRI done to check how many of these I have. I also had a positive ANA test and very sore joints so the rheumatologist is looking at RA (I hadn't mentioned the lipomas to her, so I plan to at the next appt). When I press on the lipomas they don't really hurt, but after working long hours in the garden some of those lipomas areas do hurt. I have been trying to lose weight because I have NASH. I am also a type 2 diabetic and on medication so I eat a mostly low carb diet. I normally work 4-6 hours a day gardening so get plenty of exercise. In the 3 months I have been trying to lose weight I gained 10 lbs - very disappointing to say the least. Have others had a MRI to help diagnosis Dercum's? How did your doctor's diagnosis you? Any info would be helpful. Thanks

Hi, I too have increased pain in joints and lipoma areas after increased activity. Dr Herbst used ultrasound to diagnose Dercum's. I also had genetic testing and from that she has diagnosed the autoimmune condition ALPS, which she attributes to my liver fibrosis. As mentioned in my previous post, Mast Cells seem to be at the forefront to all of this. All of my symptoms/diagnoses began for me after having COVID. In almost 3 years since having it, my blood vessels are a mess. I have vascular insufficiency, phlebitis, leaking vessels causing lipomas and fibrosis (Dercum's), and calcification in carotids and abdominal aorta. I had a CT calcium scoring test done 7 years ago with the results stating zero. My lifestyle has been no different in those 7 years so it's very curious as to why my vessels have gotten so diseased.

Hello Ellenbret and Daylily4me 💕 -
I concur with the mast cell and low carb comments - and commiserate with both of you. I have Vascular Ehlers-Danlos (vEDS) and Dercums, some misc autoimmune issue (pos test, no specific dx), and a plethora of other annoying-as-hell diagnoses. Leaky vessels and MCAS (mast cell activation syndrome) are big in my world. I am on a mcas protocol to try to keep flares minimal. See
https://tmsforacure.org/treatments/medications-treat-mast-cell-diseases/
for ideas.
I have had many MRI’s but don’t believe that lipomas can be seen on them?? I could be wrong as tech is changing so rapidly.
Dr Herbst is THE Dercums Specialist! I really should just make the appointment…. I have read her work….
Things that I feel have helped:
Mast Cell Stabilizers and daily protocol - keeping the different classes humming in my bloodstream:
https://tmsforacure.org/treatments/medications-treat-mast-cell-diseases/
- Low carb diet to cut down inflammation. I feel best when avoiding sugars but that damned sweet tooth….
- Adderall - I am on a generic, titrated to not make me jumpy. Research indicated it can be helpful, seems to keep lipoma population and weight steady-ish.
- graduated compression devices (leg/torso) due to many surgeries that trashed my lymph system.
- Walking, yoga with movement to keep lymph flowing, organs engaged

Not gonna lie it is a daily challenge to keep going. I am 63, (over-)qualified for disability at 56. I need to honor what my body is telling me because when I don’t, I pay for it.
Do you also personify your body and it’s parts? My disabled friends and I laugh at how we talk issues!
You’ve gotta laugh - our situations are utterly ridiculous sometimes, hey?
Hugs 💕