For Christa Whightsel, her “introduction” to CRPS started with what seemed to be a minor accident at work.
In 2008, the 20 year old former dancer was injured at work. She suffered a bone bruise and a slight break in the skin. It was enough to go to an emergency room, but something that seemed relatively minor at the time.
A week later she was “hurting so badly I couldn’t stand.”
For the next seven month she went to what she said felt like “a million doctors” and no one could tell her what was wrong.
Finally, an orthopedic specialist in Columbus, Ohio touched her foot which made her scream in pain and he said, “You have RSD”.
Like many, her first reaction was, “What’s RSD?”
The official title is Reflex Sympathetic Dystrophy, better known these days as CRPS, Complex Regional Pain Syndrome. It is a chronic pain condition most often affecting one of the limbs, usually after an injury or trauma to that limb, just like what Christa experienced.
What happened during this time was a period of anger and isolation.
“I blocked out my friends and was bed bound for 8 months, only interacting with my family and my computer.”
That computer, more specifically the internet and Twitter, is what got her going again.
“I found a group on Twitter, connected with a woman there and began to really concentrate on how to share experiences with people who were talking about life after diagnosis,” she told us.
That woman, Flora Langel Decock lives in Iowa. Together she and Christa started to build something - something big.
“It started out as support group on Facebook and we found 120 people in the first week, which we thought was great,” she said.
Now the Facebook page (RSD/CRPS Doesn’t Own me) has nearly12, 000 followers in 36 different countries. Their website has become a go-to place for people wanting to learn more.
“The RSD/CRPS Doesn’t Own Me website is an excellent place to find information on the disease, locate a support group, or network and chat with other warriors,” said Gracie Gean Bagosy-Young, who writes extensively on CRPS for the National Pain Report.”
Christa is one of those persons who work behind the scenes.
“Christa works very hard for our community and I’m happy that she is getting some attention through this story,” said Bagosy-Young “Her site was the first site I found when I was diagnosed with RSD. She has been my guiding light and I work with her often to help promote awareness of our condition.”
Christa and Flora are forming a 501c-3 organization that will support patient awareness and education, so important to understanding CRPS.
The name of the organization?
You’ve heard it before.
“This community is more than family to me,” she said. “If at the end of the day, one person can be inspired to learn more and live with RSD, then it’s been a good day.”
On a personal level, things are going much better.
She’s walking again, working again, currently serving as a nanny to one year old triplets, has been married for five years (the story about her and husband Joseph will hopefully be a future topic for National Pain Report) and most importantly is working for CRPS sufferers who like her won’t let the disease own them!
Editor’s Note: November is CRPS Awareness Month. If you have story ideas about people and organizations associated with the disease, let us know by emailing us (firstname.lastname@example.org)
Follow on Twitter: