Pain by the numbers

I used to love paint by number kits when I was a little girl. Large black and white detailed pictures with teeny tiny numbers in each space. Those little plastic pots of paint and a tiny brush. Filling in the little spaces and creating a picture of a horse, or a kitten or puppy. By High School, I had graduated to those really big posters that come in a big tube, like blueprints. No more little numbers, and they came with a big set of markers. You got to choose your own colors. I remember getting a big one of a jungle scene. Tigers and toucans, it took me forever to finish it.

When you realize that you've tumbled down the rabbit hole of chronic pain, numbers take on a whole new meaning. Pain has it's own language. Pain management people use a pain scale in which you're asked to rate your pain on a scale from 0-10. There is no way to even began to add up how many times I've been asked to do this. The first time I was asked that question, I didn't really know how to answer. Choose a number between one and ten that would tell the doctor just how bad I felt. It seemed like this was a really important answer I was being asked to give. Rank it too low, then I'm hiding how bad it really is, but give a number too high, maybe no one will believe I'm in that much pain. Irrational thinking? Maybe, but that is what goes through the mind of a chronic pain patient. For some silly reason, I always want to say, "somewhere between 6 and 7, or between 7 & 8. 6.5?, 7.5?" Those aren't the choices, but for some reason, I want to answer that way. Some nurses don't like it when you do that. They peer over their charts and say, "Well, which is it?" They don't want my fractions messing up their chart or something. Even after nearly 7 years of the dreaded chart, I still struggle with it. After all, it changes from minute to minute. It can be all over the number chart in a one hour period.
Sometimes the numbers have little faces above them.Happy face over the 0, then a progressively distressed face as the numbers go higher. I've gotten to the point that I sometimes hate those little faces. I'm tired of trying to put a number to what I feel. It's hard to communicate pain, and I know that this is just a tool to help health care folks understand what is going on with you. The numbers paint a picture of the pain. But still. Sometimes I just hate those charts.
Eleven. Eleven was the number that finally gave me a name for my pain. On the website, www.rsdhope.org , I found out that most people with RSD go to 6 doctors before they are diagnosed. My magic number was 11. Over six years, I saw 11 doctors of all kinds before my pain was named by a neurosurgeon. Reflex Sympathetic Dystrophy. It's also know as Chronic Regional Pain Syndrome. A very old term for the condition is causalgia.
I saw every kind of doctor imaginable in my journey to find some kind of diagnosis and relief for the burning pain in my legs and the stabbing pain I often felt in my back and legs. I saw surgeons, neurologists, physical medicine doctors called physiatrists, several different pain management doctors, acupuncturists, chiropractors, internists, all initally convinced they could help, then months later telling me they did not know what else to do for me. I had several tell me they felt that I was wasting my time and money by coming to back to them, sometimes suggesting yet another doctor, sometimes they told me not to come back and had no further direction to give me. Just keep taking drugs to try and control the pain. I saw some "out there" types of medical and naturalist people too. But that is another blog entry for another day.
But how good it was to see Dr. 11, who finally said, "this is RSD, sometimes called causalgia." A name, something to research, something to maybe find help for. But at least there is a name for it.
11 is a lot of doctors, but better than 20! I was also able to find online support groups, I can communicate with people who have it and truly understand. I found testimonials of others that I could show my family and say-"this is it exactly. This is how I feel." Other people with RSD really get it. they don't judge, or feel like they have to find something "positive" to say, like "it could be worse, you could have what so and so has." That's really never helpful. At all.
Numbers and a name for my pain. At times in the past 7 years, it has consumed me, depressed me, made me miserable, angry, frustrated.
But, it's also been the fire that has molded me into who I am now. God doesn't waste anything.