My name is Benjamin Rossington, and I am 28 years old.
I am here because I have not been able to find anyone similar to me. Am I that much of an oddity??
I have had tumors on my left arm since I was 16. They were not painful initially.
I have had tailbone pain my whole life. My temperature is normally 99degrees. My eyes have ‘floaters’ INSIDE the eye. I get terrible migraines of stabing pain behind each eye.
When I was 26, I awoke one day to several small painful lumps along my sides. A few months later, I finally managed to get county health insurance, which promptly did a biopsy. Shortly after the surgery, tumors bloomed all over my body (torso, legs, left arm only, along my spine, in my rear end).
A neurologist gave me a free sample of Lyrica… Thinking back, I probably would have commited suicide if i didn’t get those pills.
Vicodin does nothing for the pain. Advil? Don’t make me laugh… seriously, it hurts too much. Honestly, I have even had shots of morphine to help… they work for about 5 seconds.
Does anyone know if this is recognized as a ‘disability’ to the government? I am having a hell of a time getting in to see a doctor, as I no longer have the crummy county insurance.
I recently discovered that every single thing wrong with me has to do with this disease. My blood pressure spikes…
here’s a cut and paste of the list i am compiling (sorry for repeating myself)
My temperature is normally a little higher than a normal person’s; 99 degrees or so.
My tailbone is quite sore, for no apparent reason.
I have multiple floaters in my eyes. My vision can get blurry and clear up multiple times in a few minutes. On occasion, I will get such severe stabbing pains behind my eyes I think I will die.
I have frequent bouts of total confusion.
From surgery, the surgeon stated that he removed an angiolipoma, or an unencapsulated tumor. Dercums Disease type III is apparently what I have because of this.
I have always had stomach cramps and issues (IBS).
I grow tumors on my butt, upper arms, torso, thighs, and the soles of my feet.
My blood pressure does strange things, it will spike for no apparent reason (I see red clouds rolling with each heart beat.)
I have twitches for no apparent reason. My arms will twitch, my fingers twitch, my head… and the stranger of all, my stomach will twitch as if a snake is trying to dig out. The same sensation has happened inside my arms, neck, face, legs… nearly every part of my body has had this sensation. People near me can watch and see it happen. Even places where one would not expect it possible for muscles to move in that manner.
My back is likely to ‘go out’ for no reason. I do in fact have tumors along the sides of my spine.
I am extremely sensitive to heat. I find myself in extreme pain when overheated from only temperature. When overheated from activity, the pain is not pinpointed anymore. Cold can have the same effect; as a matter of fact, it doesn’t have to be ‘cold’ for me to feel cold. Generally speaking, however, I prefer being cold to hot.
If anyone can help me, please do. If anyone knows of someone else so young and a man with this, let me know… too many doctors told me I am crazy.
