Dercum's Disease (Adiposis Dolorosa)

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Dercum's Disease (Adiposis Dolorosa)
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    Dercum's Disease happens in Guys too

    20 years if searching for help from all various Dr’s, from all various insurance’s available. Maintaining career, and marriage with an unknown pain worsening each day, and never knowing what it is. Working circles around my peers just to be put out of a job after making requests for ADA accommodations, and generally discriminated.

    Now unemployed, temporarily disabled, now disabled. All while my health deteriorates with complications worsening over time. Searched out neurologists who all doubled and tripled-down on misdiagnosis. My personal advise is, don’t waste your time with Neurologists, they generally are useless in Dercum’s and will deny the disease and common known symptoms exist. I finally received a diagnosis, after consulting Dr. Herbst. I found out what I’ve been telling Doctors for years, but they just ignored me.

    If there is one takeaway that is consistent in many stories I’ve read it’s – don’t trust your health care if you don’t think you are receiving the proper care. Keep searching, do all that you can to explore all and every single option there is to find a doctor that will listen to you. If you sense you have an ego-driven Dr. – dump them, and find someone else – they are not worth your time. Get a referral to a Endocrinologist, and a Dermatologist, and you may get somewhere.

    I still don’t have a PCP that will work with me easily, it is a struggle to get anything done that is not their idea. You need a witness in every appointment if your going to get anywhere. If you attend your Dr. appointments alone, you will be taken advantage of or ignored.

    There are no good take-a-pill pain remedies. The only thing that barely helps is full spectrum double strength CDC salve, and that gets expensive. I wish there was some better option for pain relief.

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    I'm new here!

    Hi, my name is Rare1sTer. I'm here because

    #MightyTogether #Dercum 'sDisease(AdiposisDolorosa)

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    I'm new here!

    Hi, my name is Sftbrni. I’m new to The Mighty and look forward to sharing my story.




    #Crohn 'sDisease



    #Dercum 'sDisease(AdiposisDolorosa)

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    New Contributor Looking Forward to Inspiring and Feeling More of the Love and Support I Get from The Mighty Community

    Hello Mighty People. I am a newly minted writer who is working on believing in myself and my abilities. I have a rare condition called Dercums Disease and will have an article about my challenges facing my disability coming out soon on The Mighty. If anyone has this condition or knows anyone who does, please feel free to reach out. I have had it for almost twenty years. Have had 70 lipomas cut out of me in that time and have learned a lot from my experience working with doctors, both good and bad. As a writer, I look to inspire and support others who have to face challenges in life, no matter how big or small. I look forward to inspiring with all of you, my #mightycommunity #MightyTogether


    Is there anyone who can give me ANY, ANY ADVICE on HOW to help with Pain or any resource on DERCUM'S DISEASE? They grow inward laying on nerves.


    I have Dercum's Disease & Fibromyalgia--TMJ--is there anyone out there that can give me ANY ADVICE on what/where I can go or do to get help?

    I have lipoma nodules that are growing inward all over my body and putting pressure on nerves. No doctors have been able to help me, and I have seen dozens.  Experts in Arizona, Texas, Louisiana, Mississippi and Arkansas have not helped.  CAN ANYONE HELP ME?  Regular meds like Cymbalta, Lyrica, Metformin do not help.


    In need of DD Specialists in Central Ohio

    I am new to this site.....I am in dire need of Doctors who care and treat Dercums Disease hopefully within the Central Ohio area. #dercums Disease


    A few of my "lumps" are along my right ribcage and sometimes when I lean forward I feel it catch is this normal ?