NOVEMBER 4TH—Color the World Orange!

NOVEMBER 4TH—Color the World Orange!

Monday November 4th is the Color the World Orange Day—an annual event held the first Monday of November to spread awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).

“We encourage our friends to proudly wear orange whether it be nail polish, a bracelet, or a t-shirt,” said Jim Broatch, Executive Vice President of RSDA, which provides support, education, and hope to everyone affected by CRPS while driving research to develop better treatment and a cure.

“And share your story,” added Broatch. “People need to know.”

People have been doing just that.

A Caldwell, Texas woman was featured in this television story recently talking about her two-year battle with CRPS.

Whitney Lavender, who was a very active woman, started to walk down the stairs to leave her home when she fell.

“There was nothing broken, nothing in the X-rays were showing. Everyone kept saying it’s just bruised, just use the crutches and it’ll get better,” Lavender said.

After months of physical therapy and treatments, nothing changed. That is when her doctors diagnosed her with Complex Regional Pain Syndrome (CRPS).

“He looked at me and said ‘it means a lifelong of pain and medication and there is not much that anyone will be able to do for you’,” said Lavender.

Her story was even noted by Texas Governor Greg Abbott.

Broatch’s organization has a cool story on its website this past weekend. Kelly Clendenning, who has had CRPS since she was 20, talked about her 12-year journey and called for more CRPS Warriors to tell their story.

What advice would she give to newly diagnosed Warriors?

Do not take the long view right away. For many of us, we will not stay in remission so it can be easy to think “what happens in 30 years?” focus on today. Let it be enough,” write Clendenning. “Do not let them tell you it is not real or is not as strong in pain as you say it is. Do not be afraid to talk to someone else, educate yourself and above all advocate for yourself. Get family and friends involved. Get that answers and fight like the pain warrior you are.”

Back to Broatch’s call for more people to tell their story, the National Pain Report wants to help.

If you have CRPS and have a story to tell about how you or a loved one had to deal with it, share it with us either in the commentary section of this story or by emailing me directly edcoghlan@gmail.com and we’ll publish some of our stories.

In the meantime, wear orange!

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Authored by: Ed Coghlan

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Jan

Google: websites for CRPS

Then click on burning nites CRPS (it’s the most informative site on CRPS).
I’ve had it 20 years and it was misdiagnosed as neuropathy because it was so rare and unheard of!
Do NOT use Ketamine (contra-indicated and short-term).
The only relief I’ve ever gotten is from Fentanyl (100 mcg patch)

Thanks for the reminder Ed, so I’ll be wearing my orange Formula-1 McLaren cap for the rest of the week.

Denise H

I’m still new to RSD/CRPS having only been diagnosed last January. I’ve had plenty of pain from my other conditions for too long. Of course, I noticed that everything had gotten worse, I just didn’t realize it was something different.

Of course, I now recognize the differences and it’s pretty awful. This one – I’m unlucky in that I was diagnosed with mine as bilateral – on both sides – as it typically only affects one side of the body. There is not enough information out there about it though, I need to read more stories – I need to know more.