Fibro and Chronic Fatigue Support Group

I believe witholding a drug that has the potential to help 5 million people reprehensible. I have suffered with fibromyalgia for more than 20 years, and I donot use the term suffered superfluously. Whether or not you know the etiology of fibromyalgia is not the issue. Pain is the issue. Do you have any idea of the grinding horror of a 'condition' that turns an otherwise healthy body into an unholy prison? I really don't think you do. There are other drugs that are more dangerous than sodium oxybate and they have been on the market for years. Withholding this drug from our population is equivalent to condemning us to a quality of life that noone should have to endure. There are 5-6 million of us, and yet our voice is not heard, our pain is not even considered as an afterthought. Where is the justice when a minority of citizens would abuse this drug, and a majority could have remarkably altered lives. For many of us , Lyrica and Cymbalta have not been effective. Many of us have tried multiple med cocktails with little to no relief. Longtimers have had to endure the scorn of the medical community. We want palliative care and compassion. You say the potential for abuse is high. Let me tell you something, if we had a drug that reduced pain to a managable level, that allowed us to have an active and vibrant lifestyle, do you think we would share this or sell it to others? I would like to see a study that shows the efficacy of Lyrica and Cymbalta since it was approved and been consumed by a larger market. I will bet you anything, the FDA missed the mark bigtime on these drugs. For some patients they may help minutely, but the majority of fibromites of my experience, think it was nothing more than a marketing ploy to make lots of money off sick people. So far the FDA has given us zip and nothing. How can you say the potential for abuse outweighs the pain and suffering of millions. I would like to see a protest by my peers, but unfortunately many take an hour to two hours every morning just to be able to walk because many mornings they feel as if someone has sledgehammered their feet. I could go on, but I got the message, you don't want to know about our pain.

Tell me, am I too bitter? .......

I second every world Hedap says about pain and pain relievers. I'm not familiar with the drug mentioned, but I DO NOT TRUST THE FDA. I have probably taken as many as 6-10 prescription drugs that now have been taken off the market or have been identified as being DANGEROUS drugs.

It seems from news reports that those wanting ILLEGAL drugs have no problem buying them or making them. Yet, those law-abiding citizens like us fms patients are not ALLOWED to have our pain relieved by effective, tested drugs in FEAR we will ABUSE these drugs! What CRAP! It seems to me those in the medical and government fields just have NO COMMONN SENSE anymore.

I believe we fms patients could have pain-free, productive lives again provided our pain was under control or relieved. What do you think?

khibdon,

Same here w/ the new drugs, many anti-inflammatories that we now know have severe and sometimes deadly effects.

You know what really makes me spitting mad when they refer to fibromyalgia as a a constellation of symptoms of ambiguous nature or unknown etiology.......

I have lived w/fibro for over 20 years and have had it up to here--with scorn, doubt, patronization, etc

I would love to have my old life back. I would love to work again and not have to face this debilitating pain and fatigue every day of my life. I resent the implication that fibro is some emotional problem or that fibromites are lazy. I was and still am a type A personality in many respects. I believe the depression issues we face are directly linked to the lack of recognition and respect for what we go through and the effects of living w/chronic pain. I am no martyr, I want a cure or at least some hope that the FDA realizes that the 1/2 of the medical community that does not believe fibromyalgia exists, need to spend some time reading the research and less time letting their lips fly. Yes, I am angry, but sometimes my anger is the only thing that keeps me from giving up. I want to see all these uneducated doctors eat their words. And I want the FDA to refrain from calling fibro a 'nebulous' condition, to me that is short of calling fibro a farce. If anyone wants to help, write to the fda, your congressman, senator and whoever else you can think of. We fibros were dismissed as if our condition did not warrant serious consideration. If this drug could cure a cancer condition, do you think they would have held it back from marketing? Yeah, we won't die from fibro, we just feel like we are. What about compassionate care that the medical community is bound by oath to give.

Nuff ranting, I am low on patience I guess. If it gets or is approved in Canada or like country, I may have to look into alternative resources.

wishing you a soft day, xx hedap