A Chocolate Donut

October 28, 2007

Feeling good with fibro…it can happen!

Filed under: fibro, fibromyalgia, FMS, health, life — Wizus @ 11:13 am

I almost feel like my old self again! I cannot believe how good I have been feeling since I started the new drug.  It has been a long road to get to this point (3 years from diagnosis!), but I am so happy to have finally found a doctor that really understands how to treat it.  

Everyday I have one or 2 people read my post  “Fibromyalgia sucks”. The search term “fibromyalgia” is in my blog stats everyday and I wonder, how many people are looking because they have it too?

If you are one of those people, and you are having problems finding the relief you are looking for, I suggest checking to see if there is a clinical trial near you. The drug trial I signed up for (and is the one I am using now that I am off the study) is Xyrem.   Xyrem is not a new drug, it is already widely used to treat narcolepsy.   My doctor had me do a sleep study and the results showed “alpha intrusions” which means deep sleep is interrupted by bouts of waking-type brain activity.   I found an article at medscape.com written in 2003 about the connection between sleep, FM and the use of this drug (I tried to link it but the site won’t let me).  I even found one dated 2001 but it was short and too technical for my liking, but I find it interesting (and sad) that this connection was made so many years ago and the treatment is still in clinical trials!

I never thought I would feel this well and it has been only 3 months since I started treatment.  I have been afraid to make a new workout schedule.  It has been 13 months since I last attempted my running routine and that was a disastrous 2 weeks of hit-and-miss run/walks; exercise one day and spend the next 2 days paying for it, repeat, quit  😦    I have been trying to get back into yoga but even without pain, the stiffness is still there so I get frustrated with the poses I can’t do yet.  I keep telling myself to check the attitude and just do it, but retraining my brain is not easy, either!  After all these years I can hardly believe I am feeling this good!

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2 Comments »

  1. Good luck!! I’ve heard how hard Fibro can be for a person. I’m so glad you’re feeling better! *hugs*

    Comment by cmmg — November 1, 2007 @ 8:44 pm

  2. I googled heart racing xyrem and found your blog. How awesome and exciting that you are on xyrem for FM!! I am in a study right now. 25 years old and i haven’t felt this good in 15 years. My scary concern right now is my racing heart that seems to be worse and worse in the last two days. I have been taking sudafed forever for allergies. Is this what you were taking? I have been taking a potassium supplement becuase I was gettin cramps like i had a deficiency. I had a banana yesterday riht before dr. appt and my resting pulse was 116. I would like to hear more about your experiences with xyrem and Fm. you can email me at empressesther@yahoo.com.

    Esther

    Comment by Esther — December 14, 2007 @ 4:17 am


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