Fibromyalgia

Story in the news:

http://www.medpagetoday.com/ProductAlert/Prescriptions/21809

wow, that's pretty crazy. i don't feel one has to think deeply of how this med would be abused.

But, on the other hand, I wonder if my negative reaction to it is a knee jerk reaction based on only having heard very negative things about this drug for years.

I know many people have the same reaction to the oxy that I take quite successfully.

Let me comment as someone who has taken the drug. One complication is that you cannot take xyrem and anything else that may suppress your breathing, such as a narcotic or valium or anything else. So if someone with fibro is on a long-acting opiate, like my mom is on, she wouldn't be allowed to take xyrem. I found a few things about it.

First, the comments about being knocked out so fast weren't really as true for me. The pharmacist told me to take the drug in bed because I probably wouldn't make it to bed otherwise. But I found it that it was a good 5 minutes at least before I started to feel groggy. But what it does is make you not really realize you're asleep. For example, I usually fall asleep listening to an audio book. When I am close to sleep, I'll turn off my iPod. But when I was taking xyrem, I often came back to the book to see that I had turned it off an hour after my last remembrance of it. As for having to set your alarm to take the second dose, I never bothered doing that. I usually did wake up on my own, so I'd take the second dose then. But if I slept naturally, which was rare, then I'd not try to wake myself up.

Second, you have to get the drug through xyrem's own pharmacist. The average pharmacy does not stock it. It is mailed to you through FedEx, and you and only you, are allowed to sign for it. So they take really good care that it doesn't get into the wrong hands.

Third, one concern I've heard people mention is the fear that the drug could be used as a "date-rape" drug. I can picture very few drinks that xyrem could be put into that would not taste so nasty that the person wouldn't identify she'd be doped. Xyrem tastes just AWFUL! The pharmacist from xyrem told me I could mix it with kool-aid or Crystal Light, but that was no better. I had to plug my nose and drink, and even then I almost vomitted because of the bad taste.

One thing I did find was that I did get tolerant fairly fast. So I would take it only on nights after I had trouble falling asleep. I was allowed to increase the dosage, but only to a certain amount, so I didn't want to get tolerant to that dose.

And it isn't the most comfortable of feelings to take the drug. I can't imagine why people might want to take it recreationally. You feel just really slow and icky. But usually it does do the job of knocking you out, which is why I was put on this drug in the first place. I was in so much pain that I was unable to fall asleep. So my headache neurologist collaborated with my sleep neurologist (I have restless leg syndrome and the headache neuro wasn't comfortable treating it when I got worse) to try me on xyrem to see if that would help my pain levels by letting me get a decent night's sleep. I'm currently slowly working my way down off methadone, so I can't take xyrem right now, but once I get off it, I'll probably be willing to give xyrem another try.

Those with fibro can still try the drug, since it is approved for narcolepsy, so they shouldn't be as disappointed as if they couldn't get hold of the drug at all.