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

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.

I would also LOVE to know if there is a skilled surgeon in WI or surrounding states experienced in removing lipomas on multiple Vascular EDS patients. Anyone have info on that? 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.

My father and I have vEDS (he’s passed) and cholesterol issues and very high triglycerides even when young/lean/active. I’m on a statin, zetia, and take ample fish oil which can help avoid additional calcifications. There are other blood cells a stroke doc tested on me (weird lab…) that were oddly sized and of concern. A lot of us aren’t run-of-the-mill creatures and it can help to find curious doctors.
I am also immunocompromised (low immunoglobulins) so get vaxxed and mask up in public places.
It’s all tedious, but I have cheated death a couple times.
Best of luck to you dear!

Oh how wonderful it is to hear from others sharing my strange medical journey. Misery does indeed love company! I no longer feel I'm going insane. Regarding surgery to remove lipomas, Dr. Herbst states they will just grow back. See my earlier post regarding her plans to research a new drug CBL-514 which will be injected into the lipomas to reduce their size thus decreasing pain. So nice to connect with you ladies! 💜

I'm so sorry you have gone through so much.
I am 71 years old, and I wake up in the morning and think well what is going to fail on me today. Life now seems to be a study in downsizing the things I can do. I have 13 fairly large gardens, mostly on one acre of the four acres we owe and wonder why I didn't factor in getting old. They are getting very painful to maintain.
On Thurs I will see my PA (the internal med doc I was seeing is out for the year) and I will run by her the notion I have, that I have Dercum's. I counted up the lipomas I can feel on my left arm and the number is 10. I just discovered a new one in my shoulder right where I had the covid/flu shot and that one is sore when I press on it. I have lymphedema in my right arm from lymph node dissection. I am hoping I don't get painful lipomas there because doing surgery on that arm is a real no, no. I do have lipomas there, but they are not painful yet.
In my research I also came across info on that new drug, CBL-514, that is being fast tracked. I hope it gets approved and helps all of us.
I also have fibromyalgia, migraines (since I was 7 - I was always told that when I went through menopause they would go away - wrong, in my case), Raynaud's, chronic fatigue, insomnia, gastrointestinal issues, neuropathy, achy joints, defective aortic valve/aneurysm, wear a c-pap at night, hypothyroidism, anxiety/depression and brain fog. Good grief!!!
But even with all of that there is plenty I am thankful for, I try to screen out the ugly in this world and endeavor to create beauty through gardening, machine embroidery, painting and other crafts. It keeps me going.
I am a retire lab tech so if people have questions about lab related items, I may be able to help with that.

Thanks so much Ellenbret!
I have had 3 lipomas removed a few years back. They turned out to be angiolipomas with blood vessels. The surgeon was great, and said it was very weird doing surgery on me with the friability. The lipomas were in my abdomen creating pressure and pain. Removal helped with the pain, and I have a few more that cause sig pain when I have flares and/or costochondritis especially on the tips of my ribs. UGH! But I have loads of lipomas and would love to have a consult with her. I’ll check on her site for updates. Thanks!!!

We have many dx’s in common, dear daily4me. Thus far I have been spared neuropathy but my mother suffered horribly from it. My research on her issues led me to explore the MTHFR gene. Testing indicated that I have a mutation, and since I’ve adjusted with appropriate supplements I have been feeling better. It may be worth looking into if you haven’t. It is VERY common with EDS.
Gene Sight testing is typically covered by insurance - it is helpful in determining how a person may respond to some classes of medications. They can also test for MTHFR gene variants which may yield very helpful info. My PCP ordered if for me.
Since you are lab-savvy you may be familiar with this, though an outside company did the testing (as is typical with genetic issues, it seems).
KUDOS TO YOU for doing all that gardening!! But man oh man, my body would be verrrrry cranky with me if I tried that. You must be in excellent shape, which is a testament for the need to keep movement in our lives.
Big hugs to you!!!

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 😊!!