Sunday, November 6, 2011
The closer we get to winter, the more I hear from my fellow Zebras about Raynauds phenomenon. Which as a term I never thought about before, except what a friend of the family had where her hands had no circulation and went blue. For her it was a serious condition in itself. I never thought it could be related to my hands and feet going colorless, looking absolutely drained of blood, like they belong to a dead body - meanwhile feeling like blocks of ice that cannot regain warmth because there is no circulation. Turns out Raynauds probably is what I am experiencing! It is probably secondary to my EDS, and not as extreme as some people's Raynauds where their extremities turn blue and need medical intervention.
The only thing I have found helped, was a piping hot shower. Well isn't that interesting, usually showers lower my blood pressure ( by relaxing/dilating my vascular system - ugh POTS) and make me feel awful. Well when the circulation virtually stops to my hands and feet, the only way to get it going is to dilate the blood vessels in a good way so that blood starts flowing o the extremities again! I don't know about anyone else but I find that ironic.
Before I knew this phenomenon had a name, I knew when my body got that certain bone chill where I could not warm my extremities under two thick blankets, I would just know it was time for a hot shower, and it was fix my ice block-body-parts problem. I have developed a habit of night-time showers for this reason.
So.. What I thought was just extremely cold hands/feet that looked funny, has a name! And is associated with EDS! Weird!
Here's some info on Raynaud's:
Thank you to all my Zebra friends for continually sharing information, experience, and support. Don't know where we'd all be without each other. And that is why we need to be more visible, for all those Zebras who go on without a proper diagnosis, because living this EDS life isolated from support or Dx is unacceptable. I don't know if we can fight for a cure, but surely we can fight for every lonely zebra diagnosed? Awareness raising is part of what we seem to try to accomplish with individual and collective efforts. I just wish "we" as a whole group could get more visibility and NOT in the way shown on House! Anyway enough from me - best wishes to all reading this.