- Posted January 30, 2013 by
2,732 Days... And Counting
I have a chronic pain disorder, one without a name. My skin burns when it touches anything—clothes, people, my hair, water, and even sometimes air. I describe it as touching a hot stove. I feel the burn and the intensity, but without the heat. This had been a constant feeling, all over my body, for six and a half years. But no doctor knows what this is called. It just appeared one day, and it never went away. No one has heard of this. They have seen this kind of nerve damage in localized areas, limbs that have received trauma. But no one has ever seen it start spontaneously, and never go away. I have no name for my illness, no cause, and no cure.
It took me almost six months to tell anyone. I thought it was ridiculous, like my mind must be making it up. Soon, though, it was impossible to function through the day. I was in an incredible amount of pain, all day, every day. I would go home and stand under scalding-hot water, scrubbing my skin with a loofa, just to try to get a different sensation. That was before my pain got so bad that I could no longer stand the feeling of the shower water, and worse, the bath towel drying off.
I’ve seen about 30 doctors through all of this, everything from family practice to gastrointestinal to dermatologists to neurologists. I’ve been “diagnosed” with everything from OCD to Chron’s Disease to Fibromyalgia. I even went to the Mayo Clinic in Rochester, MN. My official diagnosis from them was a “burning skin sensation.” Which is what I came in telling them. Every doctor says I don’t belong in their department. So where do I go?
My big one-shot hope came from the National Institute of Health’s Undiagnosed Diseases Program, which is in their Rare Diseases Research department. I was sure I would fit here! I sent them all my records, including a stellar letter from my primary physician, and I got a letter back saying that this program was for undiagnosed diseases. Apparently they thought I had a diagnosis. If they’d like to tell me, I’m all ears.
It’s true, I have had many diagnosises, but none of them have proven to be right. Usually a doctor comes up with a theory, and then after a few months of treatment they say that they were wrong and send me to someone else. Who knows what kind of damage I have done on my body because of this. I once took 2700 mg of a medicine. That’s right. Two thousand, seven hundred milligrams. It was a seizure medication, though I have no seizures. Any medicine I take—and I take about 20 pills a day—are not to treat my illness, they just have rare connections to something that might help me. An antidepressant that helps with unusual sensations, or one that is sometimes used to help people sleep (I also have chronic severe insomnia, and I respond to none of the sleep drugs on the market. I pretty much take horse tranquilizers and wait until I’m knocked out).
Meanwhile, I’m stuck in limbo. It is impossible to live life in so much pain. It hurts to breathe. It hurts to talk. It hurts to move. It hurts to wear clothes. It hurts to bathe. It hurts to touch people. I live every day hopped up on painkillers, two different kinds, and they just touch the pain and most of the time make it bearable. On really bad days, it doesn't even come close.
I haven’t hugged my twin sister in a while, and she’s my world. I know I hugged her on her wedding day two years ago, but since then I’ve maybe only hugged her a handful of times since. I didn’t hug my mom for years—something that was incredibly painful for her, too. Can you imagine what that’s like? I live in a world where I’m completely isolated from the human contact around me, because if I touch someone I’m in excruciating pain. It has been the deciding factor in my last four relationships. I try to make it work, and when my pain is manageable I can. But I always have a flare, a bad time, where I’m unable to touch my significant other and it ruins the relationship. Every time.
Something is always burning. Sometimes it’s only a few areas of my skin, sometimes its small and I can manage it. But then there are times where everything is burning. And it’s bad. So bad that I can’t work, which is hard because I have to give up the thing I love and I’m good at. I’m a teacher. My college professor told me he had no idea how I’d be a teacher, what with being unable to touch anyone. That hurt almost as much as the pain does. My theory is, people who deserve hugs get hugs. When my friends and family are hurting, or happy, I give them a hug, because it’s not fair to them that I deprive them of it either. I can take it. I will be in pain, if it helps them.
Why am I writing this? Why did I send it to you? I’m asking for help. I live in small-town South Dakota, and my options for super hero doctors are limited, although my primary physician is incredible and he’s the only reason I’m alive today. But maybe someone else has an idea I haven’t tried. I’ve tried so many things, so many more than I’ve written here, but I know I haven’t tried it all.
Please help me. I have been in constant pain for 2,372 days—six and a half years. If you ask me, that’s far too long.