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Customer Story of Hope: Jo Hewitt Advocates for CRPS

  
  
  

mcgill painThere’s a pain rating scale called the McGill Pain Index. This scale starts at zero (no pain) and goes up to 50. A bone fracture is around a 15. Natural childbirth without preparation ranks just below amputation of a finger or toe, and both rank below a 40. Complex Regional Pain Syndrome (CRPS), also called Reflex Sympathetic Dystrophy (RSD), however, tops the list at a 42.  And unlike childbirth or a broken bone, things with set beginnings and ends, CRPS never goes away.

It’s this indescribably painful chronic neurological syndrome that inspired our new Fire & Ice medical ID bracelet. Well, the condition and one of its very outspoken advocates, Jo Hewitt. Jo came to us asking for an orange beaded medical ID bracelet so she could live with CRPS more safely while also raising CRPS awareness by wearing orange, the condition’s associated color. The result was Fire & Ice. We named it because, as Jo explains, “We are fire and ice. We’re always either hot or cold. It’s an extreme disease. I’ll have one foot very hot and the other very cold. We’ll have a heat wave, and I’ll have heating pads on. When it’s hot, it’s really painful for us. When it’s cold, it’s really painful for us.”

Fire and Ice medical ID bracelet for CRPSI quickly noticed that Jo rarely talks about herself and her CRPS, but about “we” and “us” and “our.” She’s always thinking of things in the bigger picture of people with CRPS or RSD, or as she says, “RSDers.” A staunch CRPS advocate and fundraiser who serves as administrator of multiple CRPS support groups online, Jo is always reaching out to newly diagnosed people and offering them the wisdom of her experience and the comfort of knowing they are not alone. “I like to help people. It helps me,” explains Jo, “and I remember the feeling I had when I first had this. Oh my God. I was extremely lucky that I had help.”

Asked about her diagnosis phase, Jo recalls, “The doctor called it a, ‘suicide disease.’ It’s the most painful disease there is. It’s rated 42 on the McGill Pain Index, which is higher than Cancer and Ebola. It’s constant. It doesn’t go away. And for most people, it starts in one place and it’ll spread. For me, it’s spread a lot of places. It stayed in my right arm, then went up to my shoulder. And then I had a flu shot and that made it go through my whole left arm.” Jo recalls an incident in which a wine bottle fell on her foot in the grocery store, and she simply sat down and cried, knowing that she would then have CRPS in her foot, because for her, it’s trauma-induced.

Not all cases of CRPS are trauma-induced, however. There are two main types of CRPS:

  1. CRPS Type 1 (also RSD) – There is no identifiable nerve injury to which the onset of symptoms is attributed.
  2. CRPS Type 2 (sometimes called Causalgia)  -- There is a specific, major nerve-related injury at the onset.

While CRPS has over 90 symptoms, the primary identifiers of this nervous system disorder are intense, burning pain; excessive sweating; swelling of tissues; extreme touch sensitivity; and pathological changes to the bone and skin. There is no cure, and treatments vary based on a patient’s symptoms.

Jo Hewitt CRPS WarriorBefore CRPS, Jo was an avid cyclist who rode daily and worked in a bike shop, something made all the more impressive because she had already experienced years of other significant medical problems. True to form, however, Jo takes a positive spin on having had medical conditions her entire adult life. “It’s really hard on me emotionally, but I’ll deal with it because that’s what we do. Some people don’t handle it as well because they’ve never been sick before. This is their very first thing, and they don’t deal with it well. It’s a heart breaker. We lose people to suicide almost every week. They just can’t deal with the pain.”

CRPS can happen to anyone at any age. For some, it’s trauma-induced, while other people have no precipitating injury and just experience the onset of symptoms. Jo explains that while it’s most common in women from 40 to 50, men and children also develop this debilitating disease. “The kids, it just breaks my heart,” says Jo, who works hard to organize fundraisers to help find a cure. “I want those kids to walk again.” For people who want to learn more, participate in fundraisers, or find other ways to help, Jo recommends visiting RSDSA.org.

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Comments

This sounds very similar to what my granddaughter (aged 24) has been diagnoised with: tri-jiminal neuralgia also referred to as the suicidal disease. The pain is in her right jaw, going to the back of her head. Several MRI's and CT scans later, nothing points to any kind of actual damage except it flairs up whenever she's cold, hot, something touches that side of her face, hot showers, heating pads, cold packs, etc.  
She has perfect teeth and 2 small children, ages 3 and 4 months. Her doctor says it's rare at her age to have this disorder. Could this be one in the same?
Posted @ Wednesday, August 06, 2014 10:14 AM by Linda Britnell
Great job - Bracelet is very nice - Keep up the good work. TY Jo.  
 
I was diagnosed 10 years ago with RSD/CRPS - and it truly is a life sentence without enough research being done. We need more to happen with this disease, they kept saying was rare but it is not rare and their are millions suffering from this. Education and Awareness is our only hope.
Posted @ Wednesday, August 06, 2014 1:16 PM by Debbie
Thank you Jo you have been such a Blessing! I was diagnosed with crps almost 5years ago. 
A simple fall torn ligaments and my life is turned upside down. Its like a nightmare you can never wake up from! Mine spread and now I have full body!
Posted @ Wednesday, August 06, 2014 1:50 PM by Lori Joksch
CRPS/RSD is an awful condition to live with. Every day is a battle for all of us who suffer from this horrid monster!! Thank you so very much for creating a beautiful medical alert ID bracelet for all of us ~ I can't wait to get my bracelet!
Posted @ Thursday, August 07, 2014 11:54 AM by Robin G.
To Linda Britnell: No. Tri-geminal neuralgia is something different, although no less painful. The tri-geminal nerve begins near the temple, about an inch above the ear, and has 3 branches: to the cheekbone & nasal passages; along the upper jawbone extending into all upper teeth; & along the lower jawbone & to all lower teeth on that side of the face. When you have dental pain it's the tri-geminal nerve, but dental problems are not the only cause of tri-geminal neuralgia. It can be caused by trauma to the face, such as from a car accident. While I do not have tri-geminal neuralgia but tri-geminal hyperalgesia, it was a possible diagnosis for me after my car accident. Anything to do with the tri-geminal nerve is very painful & should be rated on a pain scale similar or greater than CRPS/RSD. I am so sorry your grandaughter is going through such pain.
Posted @ Friday, August 08, 2014 2:10 PM by Jaqi Guinn
Thank you, Jaqi Guinn. I appreciate your taking your time out to better educate me on this situation. I've had to leave my home and stay with her and be with her children and hubby while she was having this bouts. Her doctor put her on Neurotin 4 times a day and at first it helped, then it stopped helping. Her doctor says that surgery "might" or "might not" help the situation. Again, thank you for taking the time out to email me. It was very kind of you. 
Linda
Posted @ Friday, August 08, 2014 6:52 PM by Linda Britnell
I've had RSD for 13 years now.Im 31 now and still dealing with terrible disease.I still think about suicide just to end it all but i just cant for my family's sake.Raising awareness and finding a cure has my full support.I pray that someone will find a cure.Bless you all for all the support your making.
Posted @ Saturday, August 09, 2014 12:19 AM by Joseph Smeaton
Thank you, Jo, and Lauren's Hope!! We suffer greatly, and people need to be aware. I think of suicide everyday.
Posted @ Thursday, September 04, 2014 8:23 PM by Lallamos
Comments have been closed for this article.
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