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Sodium oxybate for Fibromyalgia User Reviews

Brand names: Xyrem, Lumryz

Sodium oxybate has an average rating of 8.0 out of 10 from a total of 9 reviews for the off-label treatment of Fibromyalgia. 67% of reviewers reported a positive experience, while 11% reported a negative experience.

Sodium oxybate rating summary

8.0/10 average rating

9 ratings from 9 user reviews.

Compare all 27 medications used in the treatment of Fibromyalgia.

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11%
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  • hopea...
  • Taken for 5 to 10 years
  • July 23, 2013

Xyrem (sodium oxybate) "I'm pretty frustrated that they didn't have Xyrem for Chronic Fatigue Syndrome because it is such a huge help for it. Like many I have fibromyalgia and CFS (like a world renowned doc I have seen he believes that it is the same condition). I would just like to say that for 10-11 hours each day I now shower, get ready, take my son to school, take my son to his practices, go to his games, go on vacations, go places, do laundry, iron, wash the dishes, make lunches, take care of the dog, etc. Before Xyrem all I could do was lay and feel horrible. I take it's different than most because this is how it works for me. I have to wait at least 3 hours (due to digestion) after eating a meal before taking it. "

9 / 10
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109 Report
  • Anonymous
  • September 27, 2012

Xyrem (sodium oxybate) "I can always count on getting a deep sleep using 4.5g 2x night. Sometimes I'll use it 3x in a night. I have used it for almost 3 years. Just to see if I was addicted I stopped cold turkey and had absolutely no adverse symptoms. Just to be really sure I have stopped suddenly for a week or so about 3 times in as many years and never a bad reaction. This is absolutely the best medicine that I have tried for Fibromyalgia, and I have tried so very many, almost all of which had terrible withdrawal symptoms when I went off of them."

8 / 10
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104 Report
  • Anonymous
  • October 6, 2009

Xyrem (sodium oxybate) "I was in a clinical study for Xyrem for fibromyalgia. I hated having to wake up to take the 2nd dose. Was afraid of being addicted to the medicine. It did not significantly lessen my pain. I had suffered from sleeping problems for years and was really afraid that I would have horrific problems sleeping once I stopped the medicine. But to my surprise it seemed to have forced my body to break the insomnia habit. I haven't had sleeping problems in the year since I quit the drug. Used to wake at 3 am most mornings and not be able to get back to sleep or have trouble getting to sleep. Now I sleep from 11 to 6 usually - no problem. So I am grateful for that."

3 / 10
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70 Report

Frequently asked questions

  • Fight...
  • September 21, 2016

"This is truly the best medicine/treatment for fibromyalgia or CFS. It's such a shame that most people with these awful illnesses can't get it. I dont wake up 2-4 hours after my first dose to take my second. I feel like that was truly for people who have narcolepsy. When I wake up naturally after my first dose I take my second dose. I'm truly sad for all who don't even get the chance to try this. The FDA would rather people take their lives than let them have a treatment that works for fibromyalgia and CFS."

10 / 10
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42 Report
  • Anonymous
  • July 19, 2009

Xyrem (sodium oxybate) "I have taken Xyrem for 4 years without any negative side effects. The only drawback of this medicine is you have to wake up in the middle of the night to take the second dose. My quality of sleep has improved, and I am in less pain."

7 / 10
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67 Report

Are you taking this medicine?

  • 69andup
  • Taken for 10 years or more
  • January 19, 2015

Xyrem (sodium oxybate) "Dramatically reduced pain, fatigue, daytime sleepiness, and fuzzy thinking. The last time I skipped taking Xyrem, I was unable to go to sleep all night. I am concerned about this should I need to quit taking it."

9 / 10
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32 Report
  • Fibro...
  • October 29, 2009

Xyrem (sodium oxybate) "Xyrem got rid of my pain significantly as well as the feeling of being drained. I felt as if I no longer had fibro. The side effects were difficult. Still trying to work with those."

7 / 10
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59 Report

More FAQ

  • bjszj
  • Taken for 1 to 2 years
  • May 15, 2012

Xyrem (sodium oxybate) "Better sleep less PAIN"

9 / 10
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42 Report
  • Marie
  • Taken for 2 to 5 years
  • April 21, 2020

"sodium oxybate has been the only thing to stop the pain from my fibromyalgia"

10 / 10
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8 Report

Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.

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