Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I was just going over some old postings and came upon some from Liane999. She mentioned she was to start taking Xyrem in a group study. Does anyone know how she is doing? Hope all ,is going well. Thanks
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Well, I am now into Month Four of this clinical trial. It's been a very difficult ride. I am taking two doses - 4.5 and 3.5. It is especially difficult for me as I work and need to get up at 6:30 to get ready for work. There's an expression in french that translated, eloquently describes how I feel when I get up - "it takes all my small change" for me to get up and have my shower. I see my doctor once a month and he usually increases the dose at that time. Each time the dose increases, I feel groggy for days after. I've learned to leave the increase in dosage to the weekend because I was usually unable to go to work the next day.
Whereas I was functioning quite well prior to taking the Xyrem, I now have increased flares along with new symptoms.
The rigid regime one must adhere to with this drug is also difficult. Initially I was getting home from work at between 6:30 and 7:00. Imagine... you need to pick up something on the way home that you are out of, you prepare dinner, do the dishes, get things ready for the next day, take off your make-up, figure out what's clean to wear for the next day... and BOOM! BEDTIME!! Ya, haad to take the Xyrem at 9:15 with lights out by 9:45! To further exacerbate the situation, one must take the med two hours after eating on an empty stomach. No matter how much I hurry, I'm often eating dinner around 8:00. When the heck am I supposed to run errands and heaven forbid I need to do laundry during the week. Nevermind that I already have no energy left after a day at work... I was becoming extremely depressed as well as frustrated. It feels like it is all in vain but my doctor insists that this is a miracle CURE!!! He did however, sheepishly admit that initial results now show that it is taking longer than anticipated for results. He is now stating 9-12 months. WHAT!!? I don't know if I can handle this that long. At least if there was improvement, it would be easier, but worsened symptoms can only discourage.
I researched Xyrem on-line. Depression is a possible side effect. I told my doctor that I find myself crying alot (due to the frustration of the rigid routine)? The thing is, I get no down-time before bed. Not only that, but I can't accomplish all there is, partly because of extreme fatigue, partly because of time constraints. FINALLY he has expressed concern and allowed me to take it later. 10:30 and lights out by 11:00. Still, it takes a bit for it to get out of my system in the morning and it certainly isn't easy.
One of my new symptoms is more severe pain at night. My fibro is predominantly in my hips and I tend to sleep on my side. Sheer agony that brings me to tears is how I awake at night. I take an oxycocet, but it takes 45 minutes to kick in and another half hour to make me tolerate the pain enough to go to sleep.
Another new symptom is what I can only describe as "trigger hip". You've heard of "trigger thumb"? Well, my hip is like that in two places. It snaps in and out of place (will start a new post to see if anyone else is experiencing this)... The snapping into place thing is excruciating. Sometimes it snaps out of place in mid-stride and I stumble. On occasion, it feels like my leg is going to fold up under me. It occurs in the tendon in my right groin and in the hip joint deep in my butt (gludius maximus) area. It is the strangest sensation...
I find myself gaining weight. I have a ferocious appetitie but am told that one can lose weight with Xyrem. HUH? Maybe it's depression. When I'm depressed, I eat and gain weight.
Sometimes I feel really foggy. In my position, I deal with numbers and legal documents. I've made a few stupid errors lately and can't understand why. I find it hard to focus sometimes.
Anyway - this is my update. Would love to hear from others taking this drug. I do not discourage anyone from trying this. We all know that fibro hits us all differently. Medications help or don't help us all differently. I will see this through and if in the end, it is a cure, I will consider myself a pioneer. How can I not try this when at this point in time, few believe that fibromyalgia even exists? We have all encountered disbelievers from family and friends to the actual medical community at large. I will continue this torture and hopefully, one day I can let you all know how great I am feeling. How I've stopped all pain meds and that I have to get off this site because I'm going for salsa lessons in an hour and I don't want to be late!
Just received your post on xyrem. I'm almost in tears. You are going through so much. I pray that you will get relief. My thoughts are with you.