Melody

My name is Melody and I'm 22 year's old. In November last year I was working and hit my wrist really hard. I had very intense pain for a minute or so, then it subsided and I kept going. After that I continually hit it over and over again at the register, on a door, you name it.

Before too long I noticed some purplish patches creeping up on my forearm. Then the skin was getting tight, and my wrist began to look swollen. I freaked out one day at school and went to the infirmary on campus. That doctor gave me anti-inflammatories and antibiotics. When I returned in a week with no improvement, she sent me for a blood test and to a Rheumatologist. The blood test didn't show anything and the Rheumatologist said it must be an allergic reaction. Funny, I've never heard of an allergic reaction lasting that long and only on one side of my body.

Anyway, after he didn't give me anything I could cling to, I kind of shut down and tried not to think about it, putting it aside for a couple months. Slowly, my wrist got stiffer, and the skin itchier, and my boyfriend finally talked me into going to my family physician. She sent me to get an EMG and an MRI done, and that showed I had damage to a nerve in my hand and tendonitis in my wrist. Still, I had those weird dark patches on my forearm and the doctor sent me to a dermatologist.

Well, the very first visit was helpful, she knew exactly what it was and was talking very positively about getting it into remission. From there on, I started Dovonex, and took an immunosuppressant, and they told me to come back in a month. When I returned, it had spread to my scalp, where I now have a bald spot(thankfully still covered for the most part) and the skin on my arm had turned hard and leathery.

Since then I've started Lidex both on my scalp, and on my arm in the morning, and Dovonex on it in the evening. They tell me that the stiffness in my arm is not related to my skin problem, but at the same time, they tell me they don't know a lot about it. It gets prickly and painful, and I've now got it on my back, on the inside of my upper arm and I feel the stiffness in my thumb and pointer finger on my right hand. I've also started the PUVA light treatment, and a few people say it looks better, but it's still hard, it's still spreading, and now it's darker and I have to explain to everyone what it is.

I'm still learning things about this disease, and would appreciate any information that anyone has. It scares me that it's been so aggressive and even though they tell me it won't affect my organs or anything, if they don't know much about it... how can they say for sure? Sorry for the rambling, but please email me if you want to talk or have any info. Also, thanks for your postings everyone, it's nice not to be the only one anymore.

azlaughalittle@aol.com