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DiscussionDercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
Replies to "I want to know if anyone else suffers from lipoma pain? Do you know if Mayo..."
Yes I suffer from lipoma pain. I am presently trying to get to Mayo but I don't have high hopes. I went to University of Iowa hospital to a dermatologist specialist and a geneticist with absolutely no help. I did get my diagnosis for Dercum's but I already knew I had it. I needed it to get into clinical trials but there are very few. They didn't even run genetic testing. I asked my GP to send me to an endocrinologist and immunologist but he said they probably wouldn't see me, So I am again in Limbo. The best place to seek treatment is Tuscon. Dr. Karen Herbst. That is not practical as I am very far from there. My pain moves all over from day to day. I also suffer from depression and brain fog
They have no treatment at Mayo clinic for Dercum's disease. I've had 2 referrals and both were cancelled. I spoke with a scheduler there and he told me when he looks up the disease it is red target which means they have no doctors to treat it.
Hello Jill, and welcome to Mayo Connect - we are people living with a variety of conditions.
Lipomas themselves are usually not painful, but they can press on nerves or muscles and cause pain. If you want to learn more about lipomas, you can read here: https://www.mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470
Have you been diagnosed with each of the conditions you have listed above? Are you under treatment by a doctor?