Pain Update

(originally published on LiveJournal)
In 2003, I slipped on some ice, resulting in excruciating pain cutting its way through my left leg. I couldn’t walk without pain for 6 months, and I couldn’t walk up or down stairs. (I scooted like a toddler.) In month 3, I was diagnosed with RSD, also known as CRPS. Basically, my nerves in my knee were turned up to 11. They were always telling me I was in pain, even though nothing was actually wrong. Thanks to my friend Traci, I found the best doctor ever specializing in nerve pain. In the end, he recommended a move to a warmer climate, so we came out to CA. I was in severe pain from January 2003 until September 2005. In September 2005, I started taking a medication called Xyrem.
I’m on three medications just for pain: nortriptyline, fentanyl, and Xyrem. A couple of weeks ago, I ran out of my Xyrem. A doctor must be certified to prescribe it, and it is only shipped out of one pharmacy in the country. Why? Because you’ve actually heard of Xyrem – everyone has. Only you all know it as a very different, highly controlled substance.
Xyrem is a central nervous system depressant. It is used to treat narcoleptics (people who fall asleep randomly throughout the day). The makers discovered that it’s also useful at treating neuropathic pain. Dr. Cluff, my second pain dr. in California, prescribed it for me in September 2005. After taking it for about a week, my pain truly lowered. By January 2006, I was having very little pain, and throughout 2006 I finally experienced long-term pain-free days. Dr. Cluff and I didn’t get along. (45 minute waits to see him for 10 minutes while he wrote a prescription and asked me about our adoption.) I found Dr. Patel, only he left the area recently. So, I ran out of Xyrem. I figured I would see if it was really the Xyrem or if my knee really was better.
Apparently, it was the Xyrem.
My PCP recommended Dr. Chow, whom I saw today. I’m not sure what to think about him yet. He prescribed Lyrica, the only drug that I know of that is actually for neuropathic pain. He’s not opposed to Xyrem, he just hasn’t heard of it, and it would take him awhile to get certified anyway. So, I have a coupon for Raley’s pharmacy – fill a new prescription, get a $25 gift card. Nice. I brought the Rx over, and I couldn’t find the coupon. No problem, I’ll look here. Then, I was paged over the PA.
My insurance declined it because I had to try another series of drugs first. I’ve been on ALL of the drugs. I hate it when insurance companies decide they know better than doctors and patients. The pharmacist will fax the dr’s office and they’ll get it straightened out. Still, I hate hate hate hate insurance companies. We still haven’t been reimbursed for Jack’s birth. That’s a story I should write!
Anyway, since being off the Xyrem, my pain has skyrocketed from 0-2 to 5-7. It’s hard to lift and carry Jack, especially up the stairs. Fabric scratches my knee like steel wool, and it burns. I’m even more tired than usual – one side effect of each of my meds is drowsiness – pain makes the brain tired. I’m hoping the Lyrica will be helpful. Although, I hate being on so many drugs. It’s all a vast tapestry.

One thought on “Pain Update

  1. Pingback: Another Anniversary: 10 Years of CRPS | The Chittister Family

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