Thanks for all the reiki, love, and prayers everyone! ❤️ This has been the most challenging thing I have ever had to deal with. For those of you that dont already know, I am a PiXiE. That is someone living with pseudoxanthoma elasticum (more info about it can be found at pxe.org/art). The symptoms I have been dealing with are complicated to treat since little is known about my condition. I talk about them in detail in this interview shredbetties/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ In November I started a new (natural) treatment that took away all of my symptoms except for one... my super hypersensitive skin. I have a really high pain tolerance, anyone who has been with me when Ive broken bones knows how I deal with it. This is so very different! My neurologist diagnosed it as - Allodynia (Ancient Greek άλλος állos other and οδύνη odúnē pain) is a pain due to a stimulus which does not normally provoke pain.[1] Temperature or physical stimuli can provoke allodynia, (which may feel like a burning sensation),[2] and it often occurs after injury to a site. Allodynia is different from hyperalgesia, an extreme, exaggerated reaction to a stimulus which is normally painful. He thinks it is caused by my pxe, but we really have no proof. This is what caused me to stop working. I was working through my pain before this started. It consumes me. I cant concentrate, I have a hard time getting dressed, and when it gets really bad, I cant get dressed at all. Any fabric that rubs against my body hurts, not at all in the same way as anything else. I cant really describe what exactly I feel, but feeling it all of the time is literally making me go crazy. Weather seems to make it worse, but its really hard to say if it causes it or not. I feel like I have started to have a nervous breakdown from it. Im still trying to find something to help, but right now I feel like Im trapped. Thanks for all the love and support. It makes me feel less alone as I deal with this challenge. ❤️
Posted on: Sat, 01 Feb 2014 17:03:59 +0000