Thank you for your encouragement.   I have been waiting and fighting for 3 years now and should get a hearing sometime this month.  My sweet husband had been trying to make ends meet without my income and it had been so hard on both of us.  

If I could work I would have gone LONG ago.  

Thank you for your suggestions.  I will keep everyone informed as to how this turns out.

Bonnie

Thanks to everyone *****sponded ~

I went to my 4.5 hour fibro clinic appt. today and was given tons of info of most of what all of you described, especially the Xyrem (date rape drug!), you mentioned Leah.  This doc was in on one of the research studies they did with this drug at the university hospital clinic I went to.  She saw very positive results with those that were on the med and hopes it gets approval for fibro as she saw it most beneficial in improving the quality of sleep and therefore, potential relief from pain and fatigue.  She had many that had great results with it.

A couple of other interesting things - evidently, they tested my blood growth hormone level and the results were really low.  That, in of itself, can cause many of the fibro symptoms, I'm told.  I will have further testing done and then maybe try that if it's thought to be beneficial for me.  I'm somewhat familiar with the growth hormone as my son stopped growing at age 11 and was found to be deficient.  I have been giving him shots the past 4 years.  (Heredity?)  Too bad it couldn't put a couple inches on me - I'm only 5"1 1/2!

The other interesting thing that came out of this that I found out is the fibro and sleep cycle connection.  They have done studies showing that if they interupt the subjects' sleep throughout the night, within 4 days, these average, healthy people had many of the fibro symptoms.  Of course, sleep apnea produces the same type of occurence since you're being aroused throughout the night to start breathing again.  In my case,  I've lost 115 lbs. now and am using an auto-set c-pap machine which is averaging at a 9, which is pretty low. I would think I would not be having apnea and therefore waking up, but in the morning it still feels like I didn't even get any sleep.

I mentioned to her a fibro study years ago that I did, with the med Rotigidine.  It was a double-blind study, but I was positive that I was at least getting some of the real med and not a placebo as I had some nausea in the beginning.  It seemed to have helped with the fibro and it was good to know that it has now since been approved for use with fibro.

I'll still have to wait awhile to get some help - she sends the findings back to my doc, but maybe help is on the way.....

I think you ladies are simply amazing! I totally agree with both of you.


Lilli

Hi there!  I am new to this forum.  I was diagnosed with Fibro in July of 07.  I started a drug study in Dec of 07 for the drug Xyrem.  It was amazing and I thought I had been cured of Fibro.  Once the study ended, I was back in pain again.  I tried Lyrica, Savella, different various muscle relaxers and pain meds.  Currently I am taking Neurontin and Cymbalta and I don't notice much difference honestly.  I really hope the FDA approves Xyrem soon for Fibro because it was a miracle drug that really helped me.

I just wanted all my fibro sisters to know that I'm thinking and praying for all of you to feel some major relief today.

Lets have positive thoughts  and post something that is going good in your life.


I'm all packed and ready to leave today for Florida. I'm just going down to secure my condo and then back to the West Coast. I plan on attending a Pirate Festival in St. Augustine with some friends on Saturday.

My son comes home from Afghanistan on the 21st and I will be meeting up with him in Ky.


Have a good week everyone!


Lilli