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Guinea Pig Update

I just had my first screening session for the fibromyalgia clinical trial today.

I am rather excited about being a part of this study. Assuming I pass the screening, I have a 66% chance of being put on the medication (1 out of every 3 will be given a placebo). They are testing out Xyrem, a drug currently being used for narcolepsy, as a potential treatment for fibromyalgia. The theory is that a lack of quality/refreshing sleep may be the cause of fibromyalgia symptoms (muscle pain, stiffness, fatigue). Sleep laboratory studies of people with fibromyalgia often show a sleep disorder in which the stage IV sleep is disturbed or interrupted. This stage IV (also known as REM) sleep is critical for repairing tissue damage and feeling psychologically rested after sleep. Basically, it doesn’t matter how much you sleep if you’re not going through the proper cycles and getting restorative sleep. This explains why a fibro patient can sleep 10 to 12 hours and still feel groggy and unfreshed. A common complaint by fibro patients is that they wake up feeling “like they got hit by a mack truck.”

So why use a drug currently prescribed for narcolepsy on fibro patients? Narcolepsy is a neurological disorder where the brain is not able to properly regulate REM sleep. This causes excessive daytime sleepiness, and fits of narcosis throughout the day. Xyrem has proven effective in regulating sleep cycles in narcolepsy patients, and according to the doctor leading this study, preliminary studies have shown that it helps regulate sleep cycles (and thereby relieves pain) in fibromyalgia patients as well.

Let’s hope that I am randomly chosen to receive the drug and not the placebo :) I won’t know until after the study is over with, of course. Whether or not I take the Xyrem or the placebo, I will have to take 1/2 the solution at night before I go to sleep, and the other half 3-4 hours after (which means I have to set up an alarm to wake up and take it). This seems like a major hassle, especially for someone like me who already has sleeping issues! But, the doctor pointed out that it’s better to have 2 and 5 hours increments of good REM sleep vs. 8 hours of poor sleep. Also, I have to report three times a day into a palm pilot diary that they give me and upload the diary daily.

One Response to “Guinea Pig Update”

  1. Anonymous says:

    So , did you pass the screening ? Let me know! Love ya bunches, Mom

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