Fibromyalgia Support Group

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Muscles & Bones
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Had the study consult

fibrosucks
fibrosucks
The consult Tuesday confirmed the diagnosis of fibro. The study they are doing is for Xyrem. I'm not sure why they are continuing the study as they have already been studying this drug for about 5 years as a use for fibro. Anyway I go to see my primary doc tomorrow and see what he thinks but I'm not real keen on it. The thought of taking one more pill nauseates me. My Savella would also need to be at a stable dose which it is not at this time. Not sure what to do. At least I have a definitive diagnosis now.
deleted_user
deleted_user
Glad you went for the consult at least you got your diagnosis confirmed. You might want to talk to Abotsd I think she uses Xyrem and found it helped her alot.

Good Luck with whatever you decide to do.

Hugs
sunsetzzs
sunsetzzs
Yes, it is good to have ruled other things out and have a diagnosis. I'm not familiar with Xyrem. It's good you will get to speak with your family doctor and gather all the info you can and then decide what to do :)

Hugs
deleted_user
deleted_user
Xyrem has its side effects just like any other drug we have tried. Bad dreams, muscle pain, sweating, to name a few. It has taken forever to get it approved by the FDA because it is so dangerous. It's main component is GHB (gamma hydroxybutyrate), otherwise known as the date-rape drug.

I'm sure it can be promising for some, especially those with narcolepsy. I would like it to be out on the market for a bit longer before I would try such a drug.
CajunTiger
CajunTiger
Girl, sorry that it is fibro, but now you have an answer.....good luck working out the med details with the doc.....sometimes it is trial and error....

HUGS from down south :)
deleted_user
deleted_user
If you decide to take the xyrem, don't date...
deleted_user
deleted_user
good luck. never heard of xyrem so no help there
deleted_user
deleted_user
be careful as when i was told about this study they say you can throw up and get it in your lungs and pass, they told me my husband had to stay up and watch me for a week, that wasnt going to work as he goes to sleep at 6 pm every night and sleeps soundly that is why i didnt do it... hugs
CarrieinSK
CarrieinSK
I'm sorry you have this dreaded illness. :( Good luck with whatever decision you make regarding your medication.
deleted_user
deleted_user
Abotsd swears by it. I hope you have as good luck with it as she does. Hope you get some relief soon.
deleted_user
deleted_user
I ams of it trying to take savella again but the side effects of it are almost not worth it. I have severe upset stomach, even with a pill that keeps the upset stomach at bay. Good luck and God Bless
fibrosucks
fibrosucks
I don't think I am going to do this study as just found out today hubby is going back to work finally! The downside is he will be away all week so I don't think I want to do this if it is just me and my two girls. If there is a wierd reaction to get from a drug I am usually the one to get it so I would not feel comfortable trying this without an adult in the house. I may discuss some other options with my M.D. though.

I have finally got the Savella up to 50 mg a day and do notice some difference but it took me 1-1/2 months to get it there. Every time I bump up the dose I get the same side effects all over again and after they ease off I try to bump it some more. What a ride that stuff is.

This illness may be a real drag on life but it can't kill me or eat me, therefore, I will figure out how to get the upper hand!