Dercum's Disease (Adiposis Dolorosa)

Community Voices

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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Rare1sTer @rare1ster

I'm new here!

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

#MightyTogether #Dercum 'sDisease(AdiposisDolorosa)

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Sftbrni @sftbrni

I'm new here!

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

#Crohn 'sDisease

#GiantAxonalNeuropathy

#Dercum 'sDisease(AdiposisDolorosa)

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Jen Thilman @jen_thilman

contributor

Why I Struggled to Accept That I'm Disabled By Dercum's Disease

I have a debilitating condition called Dercum’s disease where lipomas grow under my skin and cause nerve and muscle pain. I’ve had this for almost 20 years but only recently accepted that I am disabled. Dercum’s is not actually a disease, it is a syndrome that cannot be cured. Because it is rare, few doctors know how to help. I tried to have a positive attitude and keep moving, even while in pain, but the real reason was I didn’t want to admit that I have a life-changing condition. When I look back at what kept me from admitting my disability, I realize I was influenced by both internal and external messages. — There is a stigma that goes with being disabled. This likely prevented me from seeing that I needed help. I’m not the type of person to ask for help. I don’t like people feeling sorry for me. But we all need help sometimes, don’t we?— My pain is intermittent. I can often go days with it being little more than an annoyance. So I tried to forget I have a chronic condition. But I found that not being mentally or physically prepared made episodes worse than they had to be.— I need to act like I live in a bubble and can’t be touched. Often friends would go to say something to me and grab or slap my arm. It’s a friendly gesture, so I never said anything even though it would cause me pain for hours.— I used to be someone who walked fast. With Dercum’s, I had to slow down so my limp wasn’t so obvious. I responded to my pain by trying to seem normal. Whatever “normal” is, I’m not sure. I only know that I didn’t want people to see me as different. But really, aren’t we all?— Not being able to always act “normal” caused depression I didn’t recognize or want to face. Denying the emotional pain that goes with a chronic condition caused conflicts in my life that I often dealt with poorly, especially with loved ones.— Doctors didn’t have medical codes for Dercum’s when my symptoms started, so they didn’t recognize or know how to deal with it. The first doctor acted like my pain was imagined. “Lipomas don’t cause pain,” he told me. He prescribed antidepressants saying they might help, but they only made me gain weight and become more depressed.— It took a while to get my diagnosis. I finally figured out I needed to see a dermatologist. Fortunately, I lived in a city with a world-renowned medical facility and was able to find one who was familiar with Dercum’s and confirmed it. My first step in accepting my disability came when I finally asked my new doctor, one I found that was helpful after firing three, to give me the forms for disabled parking. But it took getting stuck in a store, unable to walk and in tears of pain, to admit I needed it. This was when I began to realize I had to get over the stigma. Disabilities can be physical or mental, and often the physical can cause the mental or the other way around. I think this happens more than we realize. Pain can be immobilizing, or just inconvenient. No matter how it affects our lives, pain is pretty common and part of being human. I had to recognize this in order to see the mental strain it put on me. Denying a medical condition can prevent you from doing the things that may make it more manageable, like eating right and exercising. It wasn’t until I realized this that I started to accept my disability and really talk about it. It’s still hard to explain to people why sometimes I limp, but it’s now easier to talk about my chronic pain as being part of my life. I wish I had faced the truth long ago. It might have helped me fight the pain and emotional realities of living with Dercum’s. There are many things that would have been better in my life over the past few decades if I had only admitted that I am disabled. Was I ashamed of it? I don’t know. I only know that, like most people, I was too stubborn to admit I have flaws. Perhaps this is because society tries to tell us we should all be a certain way. Not limp through life or be depressed. Most importantly, I don’t feel abnormal anymore and this has made all the difference to my mental and physical health. The bottom line is I needed to accept my health challenges in order to face them and find happiness with who I am – a disabled individual who has every right to be happy.

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Jen Thilman @jen_thilman

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

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tonia1014 @encourage

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.

4 people are talking about this

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tonia1014 @encourage

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.

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ginnyo @tootsie

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

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Suzie Keith @steelriverblues

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

#DercumsDiseaseAdiposisDolorosa

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Community Voices

K @fightingpain

Is this an Abstraction?

To feel this way..
Quitting my job was merely a suggestion, then employment was no more.
groceries were hand delivered, you did that.
I stopped walking the dog, you did that.
On days I couldn’t cook- you picked up our meals.
You massaged my aching muscles.
You brought me water every night, while I lay in distress— a heating pad, my medicine.
Anything I needed, you were there before I could process the thought.
Luck, did I stumble upon you?
There were no commitments anymore, no reason to move.
I had nothing to do, but sit and gloom...
I soak in these precious moments as my body worked in overdrive to grow our precious child.
Yet the waves of morning sickness, aches pains and depression were present as ever..
Should I feel enamored?
I wasn’t prepared for motherhood to start this way.
Labor. 36 hours of it..
My tailbone, broken, bone deep pain I could never describe.
A feeling that never dissipated.
It manifested. A bruised body, neuropathic sensations, pain spreading head to toe, twitching and convulsions were the new normal.
Things progressed, yet now my body is covered in hundreds of painful cysts beneath my beautiful skin.
What if...
I was active? would these cysts cease to exist?
What if...
If I didn’t eat the garbage you hand fed me bedside? Would my body have the strength it needs?
What if...
If I had my friends, a support system, would I have felt the depression?
What if I had a positive role model...
Would I have had a healthier pregnancy?
See you trash your body with every cigarette you chain smoke... The veins you flood with caffeine...The sugar, the processed carbs, your staples... and the countless hours you avoid sleep..
Donut?
You know my only chance at living a normal life is through weight loss...
Why would you ask me that?
This is the furthest thing from support.
I won’t.
Am I searching for someone to blame?
Is this purely an abstraction?
What if I was being enabled all along. What if you’re really the most toxic part of me?
What if pain is just along for the joy ride?

#DercumsDiseaseAdiposisDolorosa #Fibromyalgia #MyofascialPainSyndrome #Dercumspain

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Why I Struggled to Accept That I'm Disabled By Dercum's Disease

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