RSD/CRPS Awareness Month

Did you know that November is CRPS/RSD Awareness Month?  So many know that February is Heart Desiese Awareness Month and October is Breast Cancer Awareness Month (and so on), but few know about RSD/CRPS.

Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy (RSD) is a chronic pain disorder.  It is an extremely painful disorder that tops any pain according to the  McGill Pain Index.  CPRS pain is constant, extremely intense, and out of proportion to the original injury.  The pain is often joined with swelling, skin changes, extreme sensitivity, and can often be debilitating.

If you are wondering why I might be bringing up this topic is because this is something that is very personal to me.  In January of 2013 I was diagnosed with RSD/CRPS.  It has taken me almost two years to be able to just come out and say it, to accept it.
I can't tell you how many times I wished for them to just cut my leg off to stop the pain, which I know sounds horrible.  There are times when it feels like there is a knife in my leg (or even the entire steak knife set), other times like I laid on a pin cushion and can't get the pins out.  And the newest pain is a frozen burning that just won't let up no matter what.  This is a constant pain, it never goes away.

Other symptoms include: (From American RSDHope)
- changes in skin temperature and color 
- hypersensitivity to touch, sound, vibration, wind, noise, temperature, weather, water temperature, etc.
- irritability, depression, fatigue, and/or insomnia. 
- changes in hair/nail growth 
- bone and muscle loss/changes, atrophy/weakness. 
- swelling and stiffness in effected joints.
- throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the effected area.
- tremors (shakes).
- problems moving the effected extremity/body part. 
- migraines/cluster headaches.

To be diagnosed with this has been kinda overwhelming and a blessing.  I mean, I finally have an answer for the pain and for the crazy sensitivity that causes me to not be able to wear pants or have my sheets and blankets touch my leg.  I know that there are other people out there who can understand with what I have been going through.  How mine started is not very common, it took over a year to even figure out what was going on.

This debilitating pain is why I quilt, why I sew every day.  Sewing has become the best therapy for me, helping me to concentrate on something when everything else is overwhelming.  This month the Jersey Shore Modern Quilt Guild will be creating orange awareness ribbon blocks to be made into a quilt to donate to the RSDSA, an organization that funds research for RSD/CRPS.

Who would have thought that a simple injury could turn into something that is life long, that I will struggle with forever.  At the moment, there is no more running, hiking, climbing, or boating.  I struggle just to walk any real distance or drive any real length of time.

I do have hope that with continued treatments I will one day be able to be somewhat active, that I will be able to work and lead a normal life.  That my pain will be under control and I won't want to cry every time the wind changes.  I even hope that I might be able to tolerate jeans again, oh to just pull on a pair of jeans and a cute pair of heels is a dream that I hope will come true.

Monday, November 3, is Color the World Orange Day.  A day to wear orange to support those fighting this disease.  It is a world wide event.

I know this is a long post and it is very personal, but sometimes it just makes you feel better to share something, to put it out there for others to maybe gain a better understanding.

For more information check out RSDSA or American RSDHope.  And the Color the Wold Orange event page.