Dercums Diagnosis?

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    Profile photo of Rikitix

    Hi all,

    I’m a 30 y/o, happily married Caucasian man. I had an emergency Laparoscopy 6 years ago after extreme pain in my lower right side of abdomen. The surgeon removed a lump of “twisted fat” that had wrapped around gall bladder. As a result I had gall stones and various pains etc down there for a while.

    After numerous blood tests and ultrasounds I was told the lumps are too deep to be lipomas, then another clinician said multiple lipomatosis likely Dercums. My GP (at the time) said it’s “academic” since there’s little that can be done.

    My question to you guys is, how do you know that whatever wrong with you is Dercums? I haven’t been “officially” diagnosed.

    Physical Health
    I have headaches, extreme fatigue, numbness and achy pain in legs (can’t stand or sit too long), can wake up very tense and tender especially with my back. Legs can sometimes feel like they’ve dropped off. Sometimes it just hurts all over and I spend the entire evening or weekend in bed. Keloid scars (which are rare themselves but I’ve read may be related). Then there’s the lumps and joint pain. My GP sent me for an X-ray for my knee, only not to ever mention it again. I’ve had chiropractic issues though apparently the nerves respond ok. My sister has fibromyalgia diagnosed 15 years ago. Some symptoms appear to be similar.

    Mental Health
    Nothing has prepared me for the mental issues. I’ve always been positive and upbeat social family man, the office clown and preferring socialising with friends than watching TV etc, I even began writing “my book of funny stories” but I’ve hit rock bottom. prescribed antidepressants and about to be referred for CBT. I’ve always been proud that despite any physical problems I’ve had, my mental ability and outlook is positive. As someone who qualified as a Chartered Accountant to now have Memory issues, problems with concentration and not feeling as switched on is demoralising. I frequently forget what the conversation I’m having is actually about, sometimes go to say something and it just comes out mumbling. Can’t follow meetings that well, relying on agenda items to prompt me, and I have to get comments in early on to avoid the embarrassment of repeating someone else’s comment. I’ve upset family members with thoughtless remarks and distancing myself, I felt numb, like I’m in an emotional comma. Thoughts of suicide and feeling I’m a burden are only postponed by the loving attention and patience from my wife. She didn’t marry this man, This just isn’t me.

    So My question to you guys is how did you get officially diagnosed as My GP has said it’s “academic” as there’s nothing they can do to cure it. This means my notes never actually confirmed the diagnosis. I just feel that some confirmation may lead to closure and put me on a more purposeful journey to treat what I can before it gets the better of me!

    Any help would be very welcome
    Kindest Regards

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