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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 have not been formally diagnosed but from everything I dug up and researched, I suspect Dercums Disease. I cannot find a Doctor who will take me seriously yet they have removed 2 lipomas from my body. There are so many more. Alot of them show up in CT scans and MRIs and in my thyroid etc...they call them nodules. My question is...are all of these "nodules" suppose to burn and electrocute me all day and night? It sure is no quality of life worth living...Dear GOD, help me, I cannot take it anymore!!!
Replies to "I have not been formally diagnosed but from everything I dug up and researched, I suspect..."
Hello @jillo65, sorry to hear about the pain you are experiencing. I did move your discussion to where you had met other members discussing Decrum's in the the Decrum's Disease: Let's create a support group, https://connect.mayoclinic.org/discussion/dercums-disease/ discussion.
@johnbishop asks a good question, have you sought a second opinion from Mayo Clinic like you were considering in previous posts?
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Hello @jillo65, I see from your previous posts you were thinking about seeking help at Mayo Clinic for your pain (suspected Dercum's Disease). These two sites may offer more information on how to try and get help for the pain if you suspect Dercum's.
--- Dercum Society: https://dercums.org/
--- Dercum’s disease (adiposis dolorosa): a review of clinical presentation and management:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6911249/.
I know you are in a lot of pain and it's been difficult for you to deal with it for so long. Have you considered seeking help at a teaching hospital or major health facility? Have you tried to get an appointment with Mayo Clinic? Here is the link to contact Mayo Clinic to request an appointment - http://mayocl.in/1mtmR63.