(originally published on LiveJournal)
Imagine a fountain pen, an old-fashioned kind with the sharp metal nib. Imagine that someone is able to heat that pen until it is as hot and red as a fireplace poker. Now, imagine that someone stabs you in the knee with that pen, repeatedly, all day, all night, for a month.
That was my 2003.
In the past five years, I have become a relative expert on pain. I now know that there are different types, qualities, and levels of pain. I know what pain killers are in which categories and what they do, what their side effects are, how quickly or slowly they cause dependence. I know the difference between dependence and addiction.
Why do I know all of this?
Because on January 17, 2003, I slipped on a puddle of ice, twisted my knee, and a fiery lightning bolt shot up my body from my knee, and I could not walk. It was five months before I could walk unassisted again. It was six months before I could go up and down stairs somewhat like a normal human being. I had to see one physician’s assistant, my primary care provider, a chiropractor, three physical therapists, and three orthopedists in two months. I had to fight to get an MRI done, which showed nothing was wrong. I was treated as though I was drug-seeking. One doctor literally threw a couple of samples of Celebrex at me. I had to fight with my insurance to see a better orthopedist, only to find that it was my PCP who was preventing me from seeing him. So, I had to change my PCP, and go for a token visit to a nurse practitioner, who immediately gave me a referral. The orthopod I wanted to see had a waiting list of six months. So I saw one of his partners. This was March 18, 2003. He took a look, pressed my knee in many ways, and actually listened when I screamed in pain and when I told him what the pain was like.
Burning, I said. Like my knee is engulfed in flames. And sometimes poking, sometimes stabbing. I could be just sitting and all of a sudden a shooting pain would go through me, emanating from my left knee. I was almost always in pain, regardless of what I was doing. I couldn’t handle wearing jeans because they felt like sandpaper. I couldn’t handle sleeping because I was in so much pain, and because the sheets and blankets made my knee too hot. I was always hurting. What was wrong with me?
This orthopod knew. He ordered a bone scan, and told me that he thought I had RSD. He said that he hoped I didn’t, because, “RSD isn’t something you want.” I scheduled the scan and went home to scour the Internet for RSD, or Reflex Sympathetic Dystrophy.
The first page I read, which I think was from NINDS (National Institute of Neurologic Disorders and Stroke), I knew I had it. Characterized by “continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time” that cannot be quieted by conventional pain killers or other methods, RSD is a condition in which the nerves are “turned up to 11”, and always telling your brain that you are in excruciating pain. I learned more and more, and continue to learn. I read entire books on the subject. I found every web page there was relating to it. Often, just reading was enough to cause more pain, the brain being what it is, but the more I knew, the better I felt, mentally.
I wasn’t crazy. I wasn’t wrong. I really was in as much pain as I said I was, and now, it had a name. RSD.
Well, OK, two names. In 1996, RSD was split into two – RSD and CRPS. Complex Regional Pain Syndrome is what RSD is called when the sympathetic nervous system isn’t the main culprit.
Of course, just because I knew that I had it, didn’t mean that others felt the same way. When I finally got in to see a pain specialist, on May 7, 2003, he looked at my knee for less than five minutes and said, “I don’t know what you have, but it’s not RSD.” He performed a nerve block anyway, which didn’t work, and I finally got the appointment with the orthopod I wanted to see in the first place. He confirmed his partner’s diagnosis, saying, “You definitely have RSD.”
All of these appointments and tests took their toll. I go id when I even think about a needle, and these procedures required a lot of needles. I took Ativan to calm myself down, meaning that everytime I had a needle-related procedure, I couldn’t work for most of a day. My manager was very understanding, but we’ll get to that later
In June, a good friend saw an ad in the free weekly paper – Neuropathic Pain Center. She remembered that CRPS and RSD are types of neuropathy, or nerve pain. I made an appointment for July 26, for which I was to pay out of pocket.
The best $200 I ever spent.
Dr. Don Bivins spent almost three hours with me, evaluating, examining, and listening. He knew exactly what regimens to try. I had already been on ibruprofen, naprosyn, cortizone injection, Vioxx, Celebrex, and tramadol. I was on the anti-depressant Lexapro, and had been on and off of Vicodin. Under Dr. Bivins, I began wearing a fentanyl patch. I tried Zonegran, Topmax, Resoril, Dextromethorphan, Lamictal, Wellbutrin, and Neurontin, in different amounts, at different times, some together, some apart. All very confusing.
For his part, Dr. Bivins was always available. He was amazing.
Which was a good thing, because my manager’s patience was waning. She insisted that I should be on a particular course of drugs – having been a chemistry major at one point, she knew her drugs. She also insisted that I should see a doctor in Boston, because that’s where the specialists are. I asked her to stop, because I wasn’t comfortable getting advice from so many different people, is what I told her. But she kept on with it, so I went to her manager (whose children were our flower girls) and asked him to have a word with her.
Manager called me and insisted that I go on disability until I was “cured.” I finally made her understand that there wasn’t a cure. She was just pissed off because I went behind her back to “tattle” to her manager.
All of this was in the first year.
Because of my pain, we decided to move to California, where the climate would be more conducive to recovery. We left New Hampshire and arrived here on August 23, 2004. Finding a doctor who cared proved to be more difficult than it was in our little town in NH. I found a PCP who at least believed me, and who prescribed anti-depressants and physical therapy. I was wary of more PT. The therapists in 2003 had been all about getting me to ride a bike. I couldn’t ride a bike before I had CRPS!
The therapist I met on October 14, 2004 was different. He knew what CRPS was. He knew how to “fix” it. And by summer 2005, he ordered me to walk for 20 minutes per day. From June 2003 until winter 2004, I walked only when strictly necessary. I couldn’t go very far without hurting. I couldn’t bend my knee at all. During PT with Rob, I gained mobility and flexion. When Max and I decided I was better enough to adopt a baby, I told Rob I needed to learn to get up and down from the floor. We spent three months of weekly appointments working on that.
In the drug world, I had found a doctor who seemed to know what he was doing, even if he did look like Hugh Laurie and routinely kept me waiting for an hour to get to a 10 minute appointment. He was part of a study, using a somewhat controversial controlled substance for neuropathic pain. I began taking Xyrem on September 24, 2005. December 16, 2005 was my first pain-free day in almost four years. At Christmas, my knee was OK enough that sitting in a cramped hospital room, watching my grandfather die, my knee was the last thing I thought about. As I was hurting so much emotionally, I realized, “I’m not in pain right now” and took a perverse pleasure in that. At least, I thought, I was able to be useful.
- Current Location:home, Antioch, CA
- Current Mood: thoughtful