It's CRPS Day! November 5, 2014.
CRPS stands for Complex Regional Pain Syndrome; a name that’s more commonly used to group together a few different varieties of the condition.
Type 1, formerly known as Reflex Sympathetic Dystrophy (rsd), and usually develops after a soft tissue injury, or some kind of mild trauma or injury, even though the nerves weren’t physically damaged.
Type 2, formerly known as Causalgia, and develops after nerves have been damaged.
There are also lots of other names floating around, such as Reflex Neurovascular Dystrophy, Sudeck’s Atrophy, Amplified Musculoskeletal Pain Syndrome, and most likely more.
The most common symptom is pain, and lots of it. Usually the most commonly known symptom, and one that is frequently used to diagnose is the presence of burning pain that will not desist no matter what you try.
But, at least in my experience, this isn’t always the main way that CRPS can present. There are so many other different ways it can present; it’s very individualistic.
It can ache deep down in your bones, it can feel like you’re being stabbed repeatedly with a sharp knife, you can get pins and needles, numbness, it can feel like someone’s clawing and tearing your muscle tissue from your body. You can have muscle spasms so bad that you can’t move because your muscles are so tight and rigid that they feel like there are rocks underneath your skin instead. You can feel like your skin is on fire, to the point where you can’t even touch your own skin, and you can’t even handle the gentle breeze from a ceiling fan on low because it hurts, it burns. The pain can be all-consuming during intense flare ups; you can’t focus, you can’t think, you can’t remember anything before the pain and you can’t even begin to imagine the future because it feels like there is literally nothing else in the entire world but the agony you’re feeling. This is only a small glimpse into crps; it seeps into and affects every part of your life. Because of the never ending pain I had to quit my job, I had to drop out of college. I’ve lost a lot of friends,I’ve had to give up on my dreams of having a career in theatre, and I’ve had to give up on moving out of my parents’ house. My depression and anxiety are worse than ever before, and I’m lonely a lot of the time because I don’t get out much anymore. Even something as simple as getting dressed, turning a doorknob, and using a spoon to eat a bowl of cereal can be excruciating. It really does seep into every nook and cranny of your life, no matter how hard you try to keep it from doing so.
There are lots of different things that can affect how much pain you’re in; how much sleep you got, the quality of sleep, the weather, humidity and pressure changes, any and every kind of stress, the seasons changing, if you did too much the day before, if you didn’t do enough the day before. And just because it can, it’ll flare up for no absolutely reason at all.
CRPS isn’t very widely known; it took me three years, and six different specialists from all around my province before I was finally diagnosed. It felt like an incredibly long time, but there are people who have been suffering without a diagnosis for far longer. A proper diagnosis isn’t the holy grail, but when you’ve been living in pain for so long, it feels like a relief, a validation of all your suffering, that you were right and it wasn’t just in your head (as many doctors have said). It can help you get on a better path. You can learn about it, do research for treatments and new theories, you can talk to other people who have it and finally find people who really understand what you’ve been going through.
There’s currently no cure, only various forms of symptom management. There are medications, creams, in and out patient procedures, surgeries, and some people have even gone as far as amputation to try and rid themselves of the pain. Physiotherapy, massage, and acupuncture are also ways to help CRPS. There are treatments out there that can help manage the pain and associated symptoms; you need to find a good doctor, and come up with a plan together that works best for you.
We need to boost awareness. We need to talk about it, and support each other. We need to keep funding research!
Here is a link to make a donation to a Canadian non-profit: http://www.rsdcanada.org/parc/english/parc/donations.htm
Here’s a link to donate to RSD Hope (an American site): http://www.rsdhope.org/store/c3/Donations.html
And for anyone who lives close to NYC, a CRPS Institute has been opened in the city: http://www.crpsinstitute.com/