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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
I finally saw my PA a few days ago about the possibility of having Dercum's disease. She said no because the lipomas don't hurt when you press on them. So, what I would like to know from the people that have been diagnosed with Dercum's, does it have to hurt when one presses on them or, as with me, does the area by them hurt when I do a lot of physical activity? I will have an appt. with a dermatologist in January to ask the same and check out if the areas I think are lipomas are just fat pads as my PA is thinking. I did have an area I thought could be a soft tissue sarcoma (I am a stage 3 BRCA survivor) and that was a lipoma by US. That was 2 years ago and since I have quite a few more lumps. My weight is increasing for no apparent reason.
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Hi daylily4me,
Dercum's is such a mixed bag of symptoms. I had one dermatologist tell me I didn't have it because I didn't match a picture she had. It was a different type of dercums. Type 4. I have type 1 and 2. I got my diagnosis from a geneticist, but most dermatologists should be able to diagnose it. Don't give up. I have pain all over not just where I have lipomas. That's only one of the symptoms. I have read lots of people gain weight quickly. I haven't. I stay pretty much the same so far. I have known I had Dercum's long before I was diagnosed. I've known for almost 2 years now. Keep searching. Even if you are diagnosed it's a struggle to find help. Best of luck to you!