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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
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.
Replies to "Hi, I too have increased pain in joints and lipoma areas after increased activity. Dr Herbst..."
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!
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.
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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 💕