Saturday, July 3, 2010

Note from the Mom

Hi everyone!
I am so sorry for our sudden disappearance from the blog.  The past couple months my CRPS has continued to decline at a fairly rapid rate.  Just getting through the day doing the bare minimum and working on my collar business has left me exhausted.
I haven't talked too much about CRPS before so I thought I'd explain a little more about it and what it is like for those of us who have it.  Complex Regional Pain Syndrome (CRPS) is also known as Reflex Sympathetic Dystrophy.  It is a neurological condition brought on by a traumatic event (sprain, broken bone, surgery, etc).  They aren't sure what brings it on or why some people develop it and others don't.  The nervous system is essentially stuck in the "on" position and non-painful stimuli hurt a CRPS patient.  The affected areas can also swell and change color, but pain the main symptom.  The majority of people with this disease have a mild form that is quickly diagnosed and sent in to remission with physical therapy and pain medication.  Those that don't display the typical severe swelling and radical color change have a much harder time getting diagnosed (like me).  If diagnosed before the 6 month mark, the chances of remission are high.  After that, they go down until the 12 month and above mark, where the chance is much much lower.  It can also spread to other areas of the body besides the one it started in.
My CRPS is fairly atypical.  I had the swelling, although it wasn't as bad as the typical CRPS patient's is, I had the extreme pain but I didn't have the color change. Over the past 17 months, my CRPS has spread from my left underarm to my left arm to my upper body and in the past few months to my entire left leg.  In the past week it has spread to my entire left foot, including the bottom.  When I take a step, it feels like I am stepping on needles heated in a fire.  The smallest touch, a good wind, movement causes that pain all over my body.  I can't wear tight fitting clothes or rough fabrics.  I haven't worn jeans since January (and I loved my jeans).  I haven't drive my car in 16 months.  I'm on a heavy duty narcotic pain killer called Methadone to manage the pain (a good day for me is a 7 out of 10 on a pain scale) which leaves me extremely drowsy, out of it and with slurred speech.  It is hard to think and write sometimes, especially since I use speech to text software.  There aren't many hours where I'm clear enough to write a good blog and let the girls on here.
We are going to try and get back to blogging, although it might not be very regular.  We will (and have been) reading everyone's blogs but we might not comment.

-Ashley the Mom


  1. Sorry to hear you're in so much pain. :-( We hope they can find a therapy that will help you.

  2. I hope they can find a way to take away ALL of your pain soon. Everyone in my household hates seeing you in so much pain :( *slobbery kisses*

  3. I hope they are able to fix you soon! We understand that there are more important things to take care of right now