There’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.”
I 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:
- CRPS Type 1 (also RSD) – There is no identifiable nerve injury to which the onset of symptoms is attributed.
- 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.
Before 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.