Yes, it is brutal!! I have had it for 30+ years and have never found a doctor who knows what to do. Also, I thought that I had been going through menopause with hot flashes for over 20 years, but I think part of this disease is connected to heat, and my body seems to want to produce too much heat, too often, and then I get the attack of the burning itch on neck, upper arms and back. I am even breaking out on my neck now, probably from scratching too much. I am so thankful to find all of your comments, as you convinced me that I am not just going "nuts". I think I will try the acupuncture. I will let you all know how it works for me.
Originally Posted by r3volution
I've got it too and it is brutal. Its ice packs on both arms for me to fall asleep nightly. For me it goes away in the winter, thankfully, because if I had it year round I seriously might consider killing myself because the itch is so bad it is painful and difficult to sleep. I am fairly certain it is heat related and not sunlight related because I have tested my reaction to both and it seems to react negatively to heat conditions but not necessariy to sunlight without heat. In fact, when I first got this 9 years ago I was living in a very hot and humid SE Asian country with no air conditioning in my house. But at the time, when I would travel and stay in air conditioned hotels for any length of time, the condition would go away until I returned to non-airconditioned accommodations. I too have been to the dermatologists and they are useless. I have come to the conclusion that it is nerve induced because it comes from underneath rather than the superficial part of the skin. Lately I have felt a subtle tingle and slight burning sensation radiating into my index fingers.
I'm still searching for a treatment or cure. Please share if anyone gets rid of this thing.