The Taste On ABC & CRPS Nerve Pain: Audrey Johns The Story of a Brave Pain Warrior

16 January, 2014

You should never let challenges get in the way of your dreams! Did you know that I suffer from one of the most agonizing nerve pain conditions on the pain index? Read my story below about my experience on ABC’s The Taste and hopefully you get inspired no matter what disability you may have, including sciatic nerve pain and diabetic nerve pain.

Two years ago, after a surgery to repair my right hand I was diagnosed with CRPS, also known as RSD it is the most painful nerve pain disease on the McGill Index. Daily nerve pain from CRPS is greater than natural child birth, yet thousands of people suffer from this invisible disease daily.

The disease started in my right hand and in the last two years has spread to my entire right arm, lower back and both right and left legs. I’m lucky in that the physical attributes of my CRPS are minimal. Often people’s joints become extremely swollen and purple, I’m lucky in that the swelling has not been an issue for me. The scars on my wrist often turn purple, but that’s nothing a pretty bracelet can’t cover.

This horrible disease claims more lives to suicide than any other cause of death, and why is that? First the pain is excruciating, it feels as though you’re sitting in an electric chair with bolts of electricity running through the infected areas. More importantly I believe so many patients give up due to lack of support. Lack of support from their families, friends and community.

Because it’s an invisible disease CRPS patients are often criticized by those who don’t “see” their pain. I used to have a handicap placard for the days my legs were exceptionally bad, but I stopped using it after a woman came up to me and my daughter after parking in a handicap spot, she cursed at me asking why I would steal or borrow my grandmother’s handicap placard. This in front of my child! The woman was horrible and since then I would rather suffer in silence or skip leaving the house all together on painful days. Imagine what these words would do to someone on the brink of giving up.

Even family members who have known of my disease for two years forget about it and ask me to explain all over again at family holidays. However I’m extremely lucky, I have an amazing support system in my immediate family and close friends. Without them I would have lost hope long ago.

To read the rest of Audrey Johns story PLEASE CLICK HERE.

Hello to my fellow CRPS Pain Angels out there and their amazing family trees of support! This is Keith Orsini, one of the co-founders of American RSDHope . I am a four decade plus long fighter of full-body CRPS (as well as Fibromyalgia, Failed Back Syndrome, Myofascial Pain Syndrome, etc.), just like so many of you I have a crazy medical history. Never enough room on those Drs. office forms is there?

Audrey Johns story will sound very familiar to most of you and like many of you she is a FIGHTER! I urge you to read the rest of her story by clicking on that link above. I know when she talks about having to explain to family members over and over what the disease is all about, or how she didn’t want to explain to her co-workers about her disease for fear of them not believing her or them thinking she wanted special treatment. Sound familiar? So many of our stories seem cut from the same cloth. Read AUDREY’S story, share the link from our website to it with your family and friends as you have done with so many other links about this disease. You never know which story will strike a chord with a loved one and help them to understand that that is all you seek, understanding not special favors.

Then, where ever Audrey Jones appears on television support her and that show! Write in to the show and let them know how much you support her. We need more CRPS Fighters in the media, letting the public see our faces. After you finished the article, you can come back here learn ways to connect with Audrey or look at the top right hand page of the article and it should say CONTACT AUDREY with her picture. Click on that and it will bring you to THIS PAGE.
From there you can click to; Instagram, Twitter, Instagram, Pinterest, Youtube, Facebook, and Instagram. Whew!

She has a website where she discusses Eating Healthy, something everyone with chronic illness needs to do! You can access that page directly by CLICKING HERE 

You can learn about Audrey and her story, other than just her CRPS story, by CLICKING HERE

You can contact her, as well as sign up for her BLOG, get recipes, and so much more by CLICKING HERE


Or simply EMAIL Audrey by clicking on this page and filling out the form.