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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 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
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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.