How kind of the media to make sure would-be rapists know that they can now use this drug as a date-rape drug! As far as I can tell, that is the only segment of the population that might actually benefit from having this information. For everyone else the only purpose of this article seems to be to create more paranoid sensationalism. Way to look out for us!
Any electronic PDR can tell you every drug out there that contains GHB in its manufacturing in seconds. So, it's not like the writer of the article is letting the cat of out the bag. Any nurse, doctor, pharmacist, technician, medical student could tell you this much. Oh wait, you're just laypersons that don't think before they post, and assume there's some media conspiracy to abet rapists.
Anybody that's so twisted that they have to sit around formulating a rape plan, probably already knows how to get what they want. They don't need some mainstream media outlet to tip them off. It's like telling a meth addict that there's a recipe online for meth. They probably already knew this way before MSNBC did.
Not to mention the "placebo effect" which in many, many studies have proven that a placebo is often equal to or more effective than the actual drug being tested. The power of the mind is an amazing thing, it's too bad people can't use their amazing brains to realize that they should stop throwing billions of dollars at pharmaceutical companies when a simple sugar pill would do the trick. (in some cases, not all)
It's especially scary learning about the increased usage of pills being prescribed to teens and younger children. "Kid talks back to the teacher? There's a disease for that and a pill to cure it!" Whatever happen to, "Spare the rod, spoil the child"? These days it's more like, "Spare the pill, ail the child"
I seldom reply to any post on these boards due to the rampant stupdity however Sir or Madam your comment requires a response. I live with Fibromyalgia. It is not all in my head. It is a great presumption on your part to make judgements against any other individual's perception of what is painful or when they are tired, two predominant symptoms of this syndrome. I would invite you, if possible, to live with this diagnosis, and then reevalutate if "it's all in my head".
How kind of you to diagnoise me with a mental condition. There is nothing wrong with my mind though the pain that I am in on a daily basis does make me a little foggy at times. Today my pain is low and my mind is clear. 10 minutes from now that may not be the case. You do not know what people with Fibro go through. You do not know the pain we suffer on a daily basis. You do not understand the looks we get when we park in the handicap spaces and use motorized carts to get around the stores. You do not have to look at the disappointment in your childrens faces when you have to break plans. Ever had the flu? Know what that feels like? That is how I feel on a daily basis. My body is in constant pain. So in my mind that makes you lucky. Very very lucky. Count your blessings. I count mine everyday. I am blessed with family and co-workers who understand that I am sick and that each good day is a blessing and that I pray the bad days are few and far between. I hope that a new drug gets approved because right now there is only one medication approved for Fibro and it does not work for me or most people I know.
Fibromyalgia is similar to MS is along the same lines...it's a VERY REAL disorder in which your nerves are de-mylenating. Imagine a power cord without the rubber potection around it, it's kind of like that. Don't speak of things in which you do not understand.
Just because they do not know what causes an illness is no reason to say it doesn't exist. At some point in the past, they did not even know what caused nearly every well-known disease today. There are still plenty they don't know the cause of; there are medications that are effective but they don't know what makes them effective. The fact that they can't identify or find a cause for an illness YET is not a reason to withhold effective medication that can ease pain.
I suffer from another disease that some say it's"all in my head" called Reflex Sympathetic Dystrophy (yet another chronic pain disorder - pain 24/7) I find it amazing that all of these "highly educated people" (and I use the term "highly educated people" very loosely) know sooooo much about diseases & disorders. In my opinion thier "knowledge" is all in thier head - pun intended w/ very much sarcasm, I might add! I say let each & every one of these people to walk 1 day, or even 1 hour for that matter in any one of our shoes that suffer from these so called diseases that only exist in our heads!! I would love to hear thier opinion then. I've always said I wouldn't wish my disease on anyone, not even my worse enemy. But I'm changing my mind because I am so sick (no pun!) & tired of all the doubters that believe I'm making this up, that it's all in my head!!! Do you feel pain when you break your leg? give birth? fall & hurt yhour back? Well.....to bad, it's all in YOUR head!!!!
First, where do you think pain is? It is all in the mind, but so is vision, taste, hearing, touch, etc.
If someone is in pain, they deserve the ability to apply any technology to alieviate that pain. If someone else is abusing that technology or medicine, go after the abuser.
Tiffany and BLong should be allowed to try this new drug as long as it is not going to damage their bodies worse than the effects of the pain they suffer.
I have fibro and also narcolepsy. Xyrem takes care of my sleepiness by making my sleep better at night. I used to wake up 16 times an hour, which meant I could not go into deep rejuvenating sleep. I had fibro before I had narcolepsy, and was diagnosed with it about five years before the narcolepsy got bad.
Saw a rheumatologist that said, indeed, fibro is all in our head. However, let me explain. The reason regular pain meds do not work with fibro is because regular pain meds dull the pain going to the brain to be known as pain. fibro is in the brain, in that the touch of a finger can be felt in the brain as a pain. so regular meds can't dull it before it gets to the brain. that doctor merely touched me in certain places, I went through the roof in pain. and the next day I could barely walk. she knew where to touch it, to be sure. she also said that fibro can be caused by sleep disorders, she said if you disrupt someone's sleep in a certain way over and over again, you can cause fibro. That's why Xyrem is good for both. both are caused by sleep disorders.
you could hook someone up to an EEG, touch them in a pain spot and watch the pain on the EEG, so we now know it is not "all in your head". It has a verifiable proof on an EEG.
And Xyrem as a party drug ? Yeah, let's all take our /Xyrem and sleep through the party. Date rape drug? You risk life in prison, give Xyrem to the wrong person and they could have an apnea and die. It used to be sold in health food stores back in the 70s for pennies.
Fibromyalgia is considered a controversial diagnosis, due to lacking scientific consensus to its cause.[19] Not all members of the medical community consider fibromyalgia a disease because of a lack of abnormalities on physical examination and the absence of objective diagnostic tests
This condition is often linked to psychological trauma, so often, quite literally it's all in the patient's head. Not to say the pain doesn't seem very real, but suggesting it might not be a physical problem.
Bravo! This is the point that I've been trying to make for years; and the point that I think a lot of people try to make, but don't get the words out properly. It's treated with a psychiatric drug! It's a psychological problem that manifests as physical. Most of the time, anyway. Not saying that there can't be exceptions. And before anyone gets on me about blah blah blah not living with the disease, I have a friend who has fibro, and I am well aware of what she goes through.
I apologize but anyone who uses wikipedia for any of there facts and actually believes them has gone off the deep end. Next time your on wikipedia do me a favor and look for a small blue edit button on the bottom of the page. you will also notice that you can find things in there about pterodactyls being alive and well. Ha. People think this stupid @!$%# up because of you morons who will believe it without a second opinion. My mother has fibromyalgia and I know that s**t isn't in her head. its very real. And quit using wikipedia dumbasses
Apparently Wikipedia is the only reference book neccessary to become a doctor! Excuse me while I go look it up & get ready to start my own practice. Sincerely, Digar518, MD.
You, along with many practicing doctors are not up to current medical science on chronic pain disorders. You search online and read the old standard textbook info or data, and think that is it...but then most are not informed on new studies and journals written by specialists who know what the heck they are talking about.
Do not pretend to think you know something, just cause it was written online somewhere. It does not make it true.
There is a rheumatologist in Sioux Falls, SD that is a new doctor "up" on the newest research. She has told me that if you disrupt someone's sleep in a certain way every night, you will cause fibro. It has something to do with sleep disorder and pain receptors in the brain. Just as narcolepsy has to do with the GABA receptors in the brain, fibro is similar. Example: take someone with narcolepsy and fibro (me) and give them gabapentin for pain. You can knock me out for hours. Because they are similar receptors, and my sleep receptors are deficient in orexin. I went to see this doctor to rule out lupus. Thankfully I do not have lupus. But she sure knew her stuff about narcolepsy and fibro.
If you consider that the perception of pain includes the neurons in your brain and therefore the neurotransmitters, such as serotonin and norepinephrine, fibromyalgia DOES include an element in your head. However, ALL pain does!! Because it includes the neurotransmitters, and chronic pain includes an element of a cyclic nature of depression (both physical and mental), antidepressants are frequently used in an attempt to break this cycle and attempt to help with the pain. Also, tri-cyclic antidepressants are often used at night to assist with the REM sleep patterns, so you don't wake up feeling like you were hit by a mack truck.
I have fibromyalgia (diagnosed about 15 years ago, with 15 out of 18 trigger points) and have basically kept myself under control on the flu-like pain with 600mg 2x/day of guiafenesin (over the counter medicine), lots of calcium and vit c for muscle spasms, and plenty of water all day. I still have flares, and can't do a LOT of the stuff I used to do. I get so tired and have to stop sometimes in the middle of food shopping and just finish another time, but it's a lot better than it was.
Try these over the counter meds before you go with the Lyrica and stuff, if you haven't yet or if they don't work for you. It was a life saver for me!
Yes, fibro is "in your head", but it's everywhere else, too! So is ALL of EVERYONE's pain!
Don't let the brainless idiots get you down. They don't know any better, they just think they do, and need to open their 'mouths' about it. The thing that irritates me the most is that I was in Mensa, and the fibrofog takes my words away from me and makes me sound stupid sometimes. So annoying!
One point that WE are trying to make is that ANYONE can post to Wikipedia!!! Do you all understand this?! Try going to WebMD or a more reputable site than Wikipedia! You can NOT necessarily believe everything you read there! You would be much better served going to the Fibromyalgia websites to read the more up-to-date information, as they will have the most recent research info, also. Wikipedia will have little of true value and can be very wrong. Get it?!!
Bechtel, you are just plain ignorant. Fibromyalgia is a 'syndrome' not a disease. Get your facts straight if you intend to participate in these message boards. And heaven help you if you get this!!
In the American Thesarus...syndrome has the same meaning/may be replaced with......disease. Any questions? TALK ABOUT GETTING YOUR FACTS STRAIGHT!!!! And Heaven help you - period, cause Lord knows YOU need it!!!!!
The thesaurus is not a medical text. Medically speaking, when you don't know what causes something, you call it a syndrome. When it has an established cause, it graduates to disease.
In response to Bechtel-1397456...I believe that it is possible to prove that a drug is effective for the very real disease of fibromyalgia. This disease does exist! It is foolish to believe that it is only in a persons head! I was misdiagnosed several times before I was given my true diagnosis, which is Lupus/fibromyalgia, and arthritis. It is best to not pass judgement on an issue which you obviously have never experienced.
One more thing, I do have fibromyalgia and it was caused by having 2 back surgeries in 2 years. So it can come from any kind of trauma, be it mental OR physical.
Well said. There is now a school of thought this is a neurological disfunction and being treated with some success with medications geared towards ADD and MS. I recently read of a study with Ritalin that promised some interesting results.
I guess when all is said and done those people who chalk it of as "in your head" really lack compassion for others who they do not understand. What a sad life you all must lead.
I've taken ritalin for my narcolepsy, I might as well have had a sugar pill. It did absolutely nothing at all for me. Dexedrine was helping me stay awake, so I could function at work. But after 4 hours, the drop afterwards was horrible. I grew tolerant to dexedrine in a matter of weeks. The stimulants don't attack the problem, which is horrible lack of normal sleep. They mask the symptoms. I now take Xyrem and I am not sleepy anymore, and it also helps my fibro. Fibro IS a neurological problem, due to a lack of chemicals to attach to the pain receptors to make pain feel normal like everyone else feels. Our brain feels paiin when a certain place is touched or moved. So pain meds won't work because it is not pain going from a hand to the brain, it is considered pain IN the brain. Xyrem works for this, as it straightens out the chemical needs in the brain between sleep and pain.
Bad news for date rapists, if you give enough Xyrem to completely knock them out, you have them far enough "out" that they can easily die. If you give them less than enough to knock them out, they may appear drunk (and sick) but they can still move about and knoww what is going on around them. I take my Xyrem at bedtime and I can carefully walk to the door to let the dog out, I can go to the bathroom if I need to. I can wake up when the flight for life helicopter goes over my house , as I work at the hospital and wonder who's going out. There are other drugs that would be much better and safer date rape drugs. Xyrem would probably just cause coma and death if you gave them too much.
This condition is often linked to psychological trauma, so often, quite literally it's all in the patient's head. Not to say the pain doesn't seem very real, but suggesting it might not be a physical problem.
Too those fibromyalgia sufferers who rant about how "it's not just in my head!," please do not demean those people who have mental illnesses by somehow implying that this is a lesser form of disease. My sister has struggled with psychosis for years; a disease that is entirely "in her head," but no less real in its devastating impact. So what if fibromyalgia is"just" in your head? Pain is pain: ask any migraine sufferer, or amputees who feel debilitating pain in limbs that aren't there. Are you humiliated by having a "mental" as opposed tho "physical" illness? Or maybe it's just the insurance payout: insurance companies should be ashamed about their unfair treatment of mental illness patients.
For me it has nothing to do with the stigma of a mental vs a physical disease. Perhaps you are reading things that are not there. I object to anyone who claims something does not exist or is trivialized because of their lack experience with it. We all have pain both physical and mental. I strive not to judge due to any handicap.
i feel for you and your sister, i hope that she is doing as well as possible. i don't believe it to be all in my head because all of anti-depressants & fibro meds have not worked for me. i am also effected badly by rising, falling barometer pressure, this is when i have my worst pain. that is not my head, it is outside forces at work on my body.
Thoms1575137: FYI. Insurance companies reject individuals w/Fibro., because it's considered a pre-existing condition. Imagine being discriminated against by the medical community, friends, family, and the ins. co's. for a syndrome that doesn't exist--or at least that's what some uneducated experts tell us. I guess we'll just have to wait until someone famous is diagnosed w/Fibro. before it's given the appropriate attention it deserves. In the mean time, many of us will continue to struggle to make ends meet, raise a family, remain gainfully employed--while hiding our conditions so we won't be discriminated against for having an invisible disability. Sad, very sad.
I hope your sister is doing well. I was married to a man that became schizoaffective 12 years after we were married. He was psychotic, he robbed our bank, found innocent due to disease or defect. I know the difference between a mental illness, and a syndrome that causes pain intolerance. Luckily for me, I am based in reality, whereas someone with a mental illness has trouble seeing things normally. He used to pull off his toenails because he didn't want to cut them, then would walk around in bloody socks. It was horrible. He had the opposite problem, along with his mental illness, in that he knew no pain.
Okay, for the record, ALL PAIN is "mental." It's just an electrical signal until it reaches the brain, where the brain interprets the signal as "unpleasant." The stronger the signal, the stronger the reaction. But nothing starts until the signal reaches the brain. That's why they knock you out with anesthetics before surgery- disconnect the brain and the pain is absent to the patient. All pain is mental.
Back to the issue. The FDA might not approve this drug that seems to have positive effects on fibromyalgia due to the Pharmaceuticals inability to control misuse of this drug? It is a controlled substance-it will not be on the store shelf. I don't understand why it is the responsibility of the Pharma to police abuse. It is not the physician and pharmacist that prescribe?
Because right now, Jazz Pharmaceuticals is making a freakin fortune. They charge me 2400 dollars A MONTH, for Xyrem and I pay 35.00 copay. There is no cap on what their monopoly is receiving. They are the only place selling it, and if you don't have the money or insurance, you are out of luck. If they have 12 different places selling it, it will drop in price. Xyrem used to be sold in health food stores for a sleeping tonic. It used to cost a couple of dollars a bottle. But since Jazz has taken it over, its risen in price every month. I was close to the cap on my insurance costs due to Xyrem. 2400 a month times 48 months. whew
My wife has had this disease/syndrome now for about ten years...started after a surgery. I can assure you that it is not all in her head as some of the posting would like you to believe. Do not take it out on the suffering because science hasn't been able to totally figure this out yet. Maybe if the doctors stopped giving out drugs like candy people would feel a whole lot better....It's the ignorance of people like Bechtel and Lee that really hurts the people with this debilitating disease...
Hi Paul: Your comment was interesting. I have had fibromyalgia for several years now, but it became worse after I had back surgery and had bone morphogenic protein instilled in my back, which is supposed to rebuild the damaged bone. I had a number of problems that increased my nerve pain and made me break out in a horrible rash on my legs. I also became extremely tired and felt truly horrible. It has been 2 years since my surgery, and now the fibromyalgia is worse than ever. I hope your wife is doing okay.
All of these drugs need to stop being prescribed by general practitioners....jack of all trades master of none. Just because you are a doctor does not make you an expert on all drugs. In some cases once you start taking these drugs it is almost impossible to get off as withdrawall causes the same effect as what got you on the drugs in the first place.....
Xyrem can NOT be prescribed by most doctors! Physicians must have participated in an educational program and be on a registry before they can prescribe it. I'm both a pharmacist and a user of Xyrem, so I've had a little experience with this issue.
it's not known exactly what causes fibro, but when people say it's in our heads, they feel it is something we can change but don't want too. it is the CNS sending the wrong signals to the brain, these signals don't start in the brain they come from whatever area of the body is distressed. so i don't believe it is in the head, it only finishes its journey there.
This drug if it worked as it says, would help millions suffering from Fibromyalgia and Arnold Chiari Malformation which causes FM or FibroMyalgia-like symptoms. The risks are like many risks with other drugs out there that can be abused.
For those who think it is only in the mind? ...may you or your family member or any loved one never get these disorders...because you would think twice then about your mis-judgement, and lack of empathy. You must be very young, very uneducated, or some male pig to say such a thing. (I know when I was younger I passed judgements too easily...I know for certian it will catch up to you some day. Whether you believe in karma, or not...sh*t happens to everyone.
There ARE male chauvinists and you KNOW it. If you aren't one of them, you would not be upset. You who took offense...which category do you fall into? I think you answered it already.
Sorry, it is a known fact of science that men do not process with both sides of the brain, especially the right side of the brain, as women do. That is why women bear children, nurture, provide all the support to most men who are successful. Try living without a woman...you would be surely lacking.
That goes for you too david-1313343, just what I said to the other "man". But you are not a real man. Real men don't have ego's so easily flustered, that flap whenever a woman speaks her mind. I wonder do you beat up on women? Do you degrade your GF? Do you belittle her?
Or are you a big enough man to support her no matter what she goes through. I bet you are the man described in the first paragraph. Read it, and see how much does apply. And read my response to the other man who was SO easily offended by my Pig comment.
Go do some meditation and reflect on how to try to become a decent human being, for once.
If this drug truly is helpful for those with various symptom "syndromes", I hope it will be available to them quickly. I have a few issues myself- but I'm satisfied with my treatment program at the moment so wouldn't be anything I'd want to try.
WHY so much hullaballoo about possible misuse? ANY controlled substance medication has the same abuse/diversion potential. Isn't there a widely handed out as office sample sleep med that can cause (and HAS caused) people to even DRIVE in their sleep? There have been plenty of stories about "sleep sex" with some of these, but I've yet to see those blamed for "date rape" or calls for tighter control.
Basic common sense now- Keep your meds in a safe place, away from common areas (bathroom cabinets, kitchen cupboards) that someone can easily snoop in, COUNT your meds and KNOW how many there are supposed to be at any given time, a LOCK BOX is a great idea for many meds that can be used in a recreational manner, one guy I know keeps his in his locked floor standing toolbox. ONLY carry what you NEED for a day or a week in one of those little pill boxes. Some people even keep their main bottle in a safe deposit box away from home and visit once a week to fill the little pill box. AND there honestly is NEVER a reason for ANYBODY (other than a potential caretaker, say spouse or adult child- gotta use some judgement there) to know what kind of medications you take! Your meds should NEVER be the topic of light conversation, even in a "support group" for whatever, it's enough to say "my pain med, or my sleep med", you DO NOT have to spell out for anybody exactly what they might find in your home or your purse!
Please excuse the personal responsibility rant, didn't mean for it to come out that way. I just feel if this drug will be useful for so many people, they need access to it.
oldschool-1859437 you proved my point 100%. Go grow up, or learn to think of someone else before yourself, and learn to use your brain to it's fullest potential, if you are capable. You are a testosterone bag of skin.
I surmise this is your attitude towards all women. I really feel sorry for you, and any woman who is in your life.
You aren't worth my time anymore. Go smoke whatever drug, or whatever you do that is killing your brain cells rapidly.
Have a good day you two young male children. May you eventually grow up into adult men who are worthy of something good in life, and that you give to others in a non-chauvinistic attitude of being.
Oh don't let people make you mad on newsvine! It's anonymous people taking jabs at other anonymous people to see if they will respond. That way they can lay in bed thinking about how awesome they are that they made somebody somewhere mad.
"You are a testosterone bag of skin." So, Liteness, you do realize that women produce testosterone, right?
"You must be very young, very uneducated, or some male pig to say such a thing. Go smoke whatever drug, or whatever you do that is killing your brain cells rapidly." Great ad hominem. Why bother arguing the facts, or using logic, when you can just make unsubstantiated attacks against the poster. Me, I'm a college graduate, middle-aged, and while male, I am a caring father and supportive husband who helped put his wife through nursing school so she could have a fulfilling career. I am the primary caretaker for my daughter.
So, when I say you are a female chauvinist, who seems to assume that men cannot be caring because of their hormones, and who buys heavily into the ideas of brain hemisphere structural difference resulting in functional differences (highly suspect, and not widely accepted in current science; most of the information on this subject constantly repeated on the internet is based on nearly 20-year-old studies), you'll hopefully understand that this is a logical inference from what you yourself have stated (we left-brained men are highly logical, you know), and not simply an attack on your person. Oh, and as far as brain differences, were you aware that human male brains are, on average, approximately 10-12 % larger than female? (Schlaepfer T.E., Harris G.J., Tien A.Y., Peng L., Lee S., Pearlson G.D. Structural differences in the cerebral cortex of healthy female and male subjects: a magnetic resonance imaging study. Psychiatry Res. 1995 Sep 29;61(3):129-35) Sorry to use a 15-year-old study, but the size hasn't changed nearly as much as our understanding of the functions.
As far as the psychological and medical implications of FM, my wife, the BSN (that's a Bachelors of Science in Nursing) has dealt with FM patients, and I personally know someone with the syndrome. The pain, whether generated in the nerves and transmitted to the brain, or originating there, is all too real to the people who suffer with this condition. Any treatment that helps will be appreciated, whether a pain med or a psych med.
Can't believe I forgot to include these gems: "I wonder do you beat up on women? Do you degrade your GF? Do you belittle her? Or are you a big enough man to support her no matter what she goes through. I bet you are the man described in the first paragraph." Nothing like accusing someone, with absolutley no evidence, of emotional, mental, and even physical abuse of their girlfriends. Having been on the receiving end of all three, I can say that this kind of abuse comes from both sides, and that there are women out there who like nothing better than to talk a man down, insult him, belittle him, and even physically attack him, because they know that few cops in the world will believe a man who says "she hit me," and few men in the world will admit they were abused. So, liteness, how long were you withthe person who gave you such a low opinion of men?
As with all drugs that are controlled, Topamax, Lyrica, Oxycontin, etc... the pharmacies have stringent measures on filling maintenance prescriptions from mail order insurance. I used to have to fight in order to get my Topamax for my migraines and when Lyrica came out I had to fight to get that too. Why is it that the ones that need the medications the most have to fight to get it when the abusers can find ways to get a hold of it off the street for recreational purposes? This makes it harder for those of us with Fibromyalgia and other chronic pain issues to get new medicines when the old ones become no longer viable options due to our bodies complacency/tolerance to the current medications being used and not being able to increase the dosage of the drug taken. Also one medicine does not work for all Fibro sufferers so those who have tried Lyrica and found it lacking and then switched to Cymbalta and found that it caused or increased their Restless Leg Syndrome, keeping them up at night compounding their insomnia issues, they now have Savella, but that still does not help the RLS completely. This new drug would help the sufferer sleep better and avoid having to take clonazepam too. Less side effect potentials. Read up on Fibromyalgia and you will see that you have other issues along with the tissue pain and not everyone is the same. Not everyone came about their Fibro the same way, therefore not everyone is treated medically the same way. Mine did not come from the way I ate that is for sure.
I personally was diagnosed with fibromyalgia in the 90's & it has been the challenge of my life. The muscle cramps, aches, & pains--the loss of strength & agility--the lack of sleep, there is no relief some days. I am strong willed & determined. Thanks to other illnesses/surgeries, I've had pain that would break the average person. Hands down, fibromyalgia has been the worst. Years ago, I learned bio feedback and willpower techniques to lessen pain because I dislike narcotics & traditional pain killers--and it is hard as hell to admit I cannot control my fibromyalgia pain with bio/willpower techniques. And I am not alone--many sufferers have tried all the techniques & every new drug or homeopathic cure to lessen the pain.
As for Wikipedia: Information on Wikipedia is provided by laypersons adding the content from something they have read or transferred from another source. Many of the "sources" are incorrect and/or outdated. If you want current, correct information on fibromyalgia, you need to do real research.....
as scientific research has shown:
The clear cause of fibromyalgia is not known. Those affected experience pain in response to stimuli that are normally not perceived as painful. Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients. Levels of the brain chemical serotonin are also relatively low in patients with fibromyalgia. Studies of pain in fibromyalgia have suggested that the central nervous system (brain) may be somehow supersensitive. Scientists note that there seems to be a diffuse disturbance of pain perception in patients with fibromyalgia.
Also, patients with fibromyalgia have an impaired non-Rapid-Eye-Movement, or non-REM, sleep phase (which likely, at least in part, explains the common feature of waking up fatigued and unrefreshed in these patients). The onset of fibromyalgia has been associated with psychological distress, trauma, and infection.
My Fibromyalgia symptoms started a year after an auto accident 9 yrs ago but with neck pain issues and neurological symptoms such as dizziness, nausea to the point of near incapacitation. Many people suffering post-trauma from accidents who have chronic pain that goes untreated turns into Fibromyalgia (FM).
I was diagnosed with a certain spinal cord cyst, besides disk herniations, then bony anomalies in the skull effecting the brain and pressure on the brain, whether from a push effect from valsalva maneuvers or heart rate elevations vs. a pull effect from a tethered spinal cord at the base. Then my c-spine is not supporting my skull, so I have a form of cranial settling or basilar invagination, but not that serious yet.
The FM symptoms for me cannot be treated with serotonin-reuptake meds anymore due to spasms and jerking which was not normal for me prior to all this, so I take Lyrica and different pain meds. I have become hyper-sensitive to most meds and take smaller doses, especially any antidepressant used for pain or depression that reuptakes serotonin or norepinephrine or even dopamine as in Welbutrin.
Fibromyalgia wreaks havoc on the entire nervous system and is often co-existent with many other diagnosis' so doctors are overwhelmed and incapable to deal with them. If you see one kind of specialist he/she has tunnel vision into their own area of specialty and does not look at the entire body as a whole.
Chronic pain is a medical problem for many women, and they "think hormones are the cause" a recent article stated. How many times has the medical community said this when the truth of the matter is...they just do not know so they use the old fall back of hormonal issues. There are men with FM, but that is glossed over. Meanwhile all we can do is try to get help to treat us for symptoms only, ie. medications.
I also read about the elevated substance P and low serotonin. Yet I have not read anything further where they understand enough to know the cause of Fibromyalgia, regardless of how or what kicks it in, and effects us so differently, and is treated so uniquely to each individual. Then no area of medical specialist has done a Lumbar Puncture (again) to check these proteins and other substances, other than ruling in/out Multiple Sclerosis or Lyme disease.
On a positive note, it is now an official diagnosis and more recognized by primary physicians, whereas 10-15 yrs ago they treated patients worse than now.
@ JY & liteness, and all, the sad part of all of this is that there are so many diseases/syndromes out there that are misunderstood, not properly recognized, mistreated (if even treated at all!), diagnosed improperly, the list could go on & on. Then you have people that perpetuate all of the above. My heart truly goes out to anyone who suffers from what I have heard people refer to "invisible diseases" It's bad enough that we suffer from pain, insomnia, loss of mobility, basically our "normal" life as we once knew it. On top of all of that, we also face the ignorance of people that think w/ thier "invisible brain" that these diseases/syndromes don't exist or are in our heads. Like I said earlier, let them live one day/hour in our shoes (if you're able to wear them - I can't) then let them explain this imaginary pain & misery!!! Well I feel better, I got this off of my "imaginary mind"!! Best wishes to the both of you & to all of our "imaginary friends" that suffer daily, weekly, monthly & yearly <3
Just for the record, I suffer from RSD (Reflex Sympathetic Dysstrophy) This is a result of me breaking my ankle 10 years ago. I went thru the normal procedures as anyone would w/a broken limb. Everything was fine up until 7 years ago. All of a sudden my foot/leg began to swell & hurt like hell for no apparent reason. It took 2 years of many tests & several surgeries to finally get my diagnosis in 2005- RSD. Since then, I've received every kind of pain block, acupuncture, physical therapy, I even went thru a trial period of a SCS (spinal chord stimulator) all to avail. So here I am in constant pain. What used to be a very productive life has now whithered away, I am a shell of the person I used to be. I'm not looking for sympathy not in anyway whatsoever, I'm just trying to explain my "imaginary illness"!
Digar518 you wrote: "So here I am in constant pain. What used to be a very productive life has now whithered away, I am a shell of the person I used to be."
How true this is for so many of us. It is an invisible disease too. No one understands unless they experience it themselves. There are so many times I thought I would've been better off having cancer. I even told my Primary this. Cause then it would be understood, treated.
When the CNS is haywire sending continuous messages of pain to the brain, there is no relief. Meds may take the "edge" off much of the time if we are lucky, but some symptoms such as "Trigeminal Neuralgia" that I get...no med touches it. You just have to hang on and ride it out as best you can and the pain is the worst I've ever experienced.
When it comes to the brain, nerves and CNS in general or even psychological, the so-called "mental illnesses", the depression too that uses the same neural pathways to the brain, the medical profession is far, far behind in knowledge. The brain and how it works with the body remains much of a mystery.
Imaginary indeed! It is just ignorance. One of these days medicine may catch up. Hopefully.
They new research says that fibro is a sleep disorder. Over 60% of people with narcolepsy have fibro also. My rheumatologist says that if you disrupt someone's sleep in the same way, over and over, you will give them fibro. I'm just wondering who the poor person was that volunteered for that research.
I have been taking Cymbalta for a couple of years. It helps, along with the Xyrem . But the main problem with narcolepsy is the receptors for sleep are deficient in a chemical, also the same with fibro, the pain receptors are deficient in something.
I have been diagnosed with fibromyalsia and most definitly it is a real disease. Why would you let people know that this new medicine has this bad ingredient in it so it can be taken advantage of. Common sense people, common sense.
I received this article from a good friend who knows about my fibromyalgia. But, I was not totally prepared for the comments.
In 5 days I will turn 62, what used to be called "old" when I was just a child. But, 62 is not really "old," any longer, since so many people in their 60's, 70's and even some in their 80's can hike, jog, cycle and cross-country ski these days. But, while I dream of this, I know I can't. And as late as my early 50's I tried to do serious hiking until I could not any longer.
Over 30 years ago, I used to joke with my friends and tell them I felt like I had the body of an 80-year-old woman. Of course, I knew I was rather dumb to make light of it, because, while I tried so hard to put on the smile of a healthy 30-ish woman. I hurt so much. And today, when I talk with my doctor, I ask him "Have you ever in your life known a woman with so many physical ailments or problems as I have?" That is my main reason for writing. Usually, in my experience, a person who truly hurts with fibromyalgia has other problems as well.
I have had migraines most of my life, as early as age eight. More as a teen, but they really became heinous after I turned 40. Since then, I have suffered as many as 4 severe ones in one given month. Nausea was insane, but the pain was and is far worse. Basically, 25 years of my life, I was a "guinea pig" for my doctors. No medication helped and I have tried them all, as well as accupuncture, accupressure, bio-feedback, yoga, and every med from anti-depressants, anti-anxiety, you name it, I have had it. Only knocking me out and letting me sleep gets me over the worst of 3-5 day episodes. But, now days, doctors all avoid by law, giving injections that actually knock you out. I also have daily tension headaches.
I also suffer from severe IBS, Raynauds Syndrome in my fingers and toes, and have just learned that I am one of the 5% of the population who has a malformed pancreas. In the womb, the two ducts which lead out of the pancreas, unite and form one duct. I have two ducts. That might be why I never seem to get the nourishment I need though I eat quite healthy. It might also be why for the first time ever, I went to 100 in the blood glucose, indicating I might be pre-diabetic. Or, the two ducts may not be the cause.
Here are some things I suffered with, as I try to grasp onto why I suffer from severe fibromyalgia.
As a child, I had severe pains in my legs, which doctors called, "growing pains." Silly, since I only reached 5' in height by 7th grade. I began my menses early before turning age 11, but was 14 before I began to develop. When I was in my 30's, I worked on a CRT, then computers, and ended up with carpal tunnel syndrome. Only, it began with my right wrist, then in my left. I suffered with that. My neck always seemed stiff and hurt terrifically just beneath the occipital ridge of my skull, making my headaches and migraines worse. Then I visited a Neurologist and every trigger point I yelled, "pain." I had attributed those pains as part of my job.
Since that diagnosis in the late 1980's, my fibromyalgia, has spread, like a dreaded curse. My right shoulder and blade came next, then, oddly, my left shoulder and shoulder blade. It has literally taken over my body at 61. I have intenselower back pain, and both my hips and thighes ache, almost like a bad "toothache" in your legs. That is what my father and I used to call that kind of pain. Now, I cannot sleep in any position but on my back. But, like others, I never get good rest, since I wake up easily during the night, either due to the pain in my body, or because of possible sleep apnea, which I need to be tested for. I wake up gasping, unable to breathe as if wakening abruptly from a nightmare, which do not have any cause. Of course, with the lack of breath, comes the immediate migraine. So, it takes me till about noon to actually get physically out of bed, partly from exhaustion and lack of sleep, and partly, because upon wakening, I feel the intense pain in my hip and thigh and it is difficult to pull myself up. My hands and fingers ache, my whole body hurts. My 91 year old mother finds it difficult to believe. My father lived till 2006, when he was 95 1/2 years old. This is not the life I thought I would live when I was only 30. And even, at 50, I did not hurt so badly, nor feel so crippled, despite not being actually crippled.
It is not imaginary, but my ex-husband was so frustrated that hecouldn't help me,nor did he understand fibromyalgia, that the worse I got, he finally just gave up on me, and left. I must say that the mental anguish of that has had some effect on how bad my pain became. I have tried medications, and sadly have to report to my doctor, that Cymbalta does not work. As, well, be careful you who have fibro+ because I seem to stumble more easily, and have had two pretty bad falls. The only good thing I can say, is that my father's mother suffered with migraines and had pain in her hips and legs, also, making me think, perhaps, it is a genetic flaw/disposition.
My parents were both born in Sweden, and my father was raised to be "tough." I never knew that in his 70's when he cross-country skiied with his grandchildren and me, he was hurting in his legs as badly as he revealed to me before he died. But, he stayed away from doctors and he kept quiet, and silently suffered. I will never know if he perhaps had fibromyalgia, or not. I only know I do, and would be thrilled to have a couple of days without this hideous pain. It is a sad and troubling disease, and it is sad when you have to admit, to your grandchildren, or children, that you just hurt too much to do something fun. Be glad, though, that there are some people in the world who understand, and befriend you despite it.
Bechtel and Lee, you two really shouldn't be here. Just the last time I went to my scout camp I had a leatherwork instructor who had fibromyalgia. Not only that, but she was also in her 80's. She could barely walk, with or without a cane, and she had to deal with all of us 12-17 year olds. So, just cause most of the people in the world are idiots (including doctors), doesn't mean that fibromyalgia doesn't exist. So when you don't know hardly anything about what you're talking about, don't post. And don't use wikipedia either. Seriously.
i have lived with fibromyagia for 20+ yrs. any new possibility of an new form of relief from constant pain and idiot drs. thinking i'm trying to just get high is exciting. the last new fibro drug left me with massive weight gain and when i was taken off it, my epilepsy got much worse. alcohol mixed with any sedative, painkiller, tranquillizer or barbituite is an easy way for rape to happen. alcohol alone will do the trick, sometimes just a vicious predator. it's not the medacations' fault, it's the sick rapists who do these things. so watch out and protect yourselves.
The use of "date rape" prescription drugs is grossly overstated and used as a scare tactic.
Ever hear of alcohol? That works too.
Let these people have their medicine so that they can lessen the pain of thier condition. Quit trying to regulate everything to the nth degree.
That's exactly what I was thinking. Acohol and a lot of other pain medications can be used too.
How kind of the media to make sure would-be rapists know that they can now use this drug as a date-rape drug! As far as I can tell, that is the only segment of the population that might actually benefit from having this information. For everyone else the only purpose of this article seems to be to create more paranoid sensationalism. Way to look out for us!
Modern journalism at it's finest. Go for the bucks, f#@K responsibility!
Any electronic PDR can tell you every drug out there that contains GHB in its manufacturing in seconds. So, it's not like the writer of the article is letting the cat of out the bag. Any nurse, doctor, pharmacist, technician, medical student could tell you this much. Oh wait, you're just laypersons that don't think before they post, and assume there's some media conspiracy to abet rapists.
Sometimes there is just too much information. Now rapists know what to use, kind of like giving the recipe for meth on the internet. DUH!
Anybody that's so twisted that they have to sit around formulating a rape plan, probably already knows how to get what they want. They don't need some mainstream media outlet to tip them off. It's like telling a meth addict that there's a recipe online for meth. They probably already knew this way before MSNBC did.
It is very hard to produce evidence that a drug is effective for a disease that does not exist except in some peoples minds.
Not to mention the "placebo effect" which in many, many studies have proven that a placebo is often equal to or more effective than the actual drug being tested. The power of the mind is an amazing thing, it's too bad people can't use their amazing brains to realize that they should stop throwing billions of dollars at pharmaceutical companies when a simple sugar pill would do the trick. (in some cases, not all)
It's especially scary learning about the increased usage of pills being prescribed to teens and younger children. "Kid talks back to the teacher? There's a disease for that and a pill to cure it!" Whatever happen to, "Spare the rod, spoil the child"? These days it's more like, "Spare the pill, ail the child"
I seldom reply to any post on these boards due to the rampant stupdity however Sir or Madam your comment requires a response. I live with Fibromyalgia. It is not all in my head. It is a great presumption on your part to make judgements against any other individual's perception of what is painful or when they are tired, two predominant symptoms of this syndrome. I would invite you, if possible, to live with this diagnosis, and then reevalutate if "it's all in my head".
Bechtel-1397456
So fibromyalgia doesn't exist?
I'm sure a lot of people that have been diagnosed with it will be glad to know they're OK after all.
How kind of you to diagnoise me with a mental condition. There is nothing wrong with my mind though the pain that I am in on a daily basis does make me a little foggy at times. Today my pain is low and my mind is clear. 10 minutes from now that may not be the case. You do not know what people with Fibro go through. You do not know the pain we suffer on a daily basis. You do not understand the looks we get when we park in the handicap spaces and use motorized carts to get around the stores. You do not have to look at the disappointment in your childrens faces when you have to break plans. Ever had the flu? Know what that feels like? That is how I feel on a daily basis. My body is in constant pain. So in my mind that makes you lucky. Very very lucky. Count your blessings. I count mine everyday. I am blessed with family and co-workers who understand that I am sick and that each good day is a blessing and that I pray the bad days are few and far between. I hope that a new drug gets approved because right now there is only one medication approved for Fibro and it does not work for me or most people I know.
Bechtel-1397456
Fibromyalgia is similar to MS is along the same lines...it's a VERY REAL disorder in which your nerves are de-mylenating. Imagine a power cord without the rubber potection around it, it's kind of like that. Don't speak of things in which you do not understand.
Leee1102 and Bechtel-1397456: You, sirs, are morons.
Fibromyalgia does very much exist and it is hard as hell to watch a dear friend of mine suffer through this disease.
Too bad they haven't come up with a drug that ails whatever is in your head.
If you want to know how you got Fibromyalgia, the first stop may be to google Dangers of GMO foods.
Welcome to our safe, FDA approved genetic health disaster.
Yep, how 'bout Lupus, too. Hard to "prove" Lupus... Newsflash- Bechtel doesn't know what they're talking about.
Just because they do not know what causes an illness is no reason to say it doesn't exist. At some point in the past, they did not even know what caused nearly every well-known disease today. There are still plenty they don't know the cause of; there are medications that are effective but they don't know what makes them effective. The fact that they can't identify or find a cause for an illness YET is not a reason to withhold effective medication that can ease pain.
I suffer from another disease that some say it's"all in my head" called Reflex Sympathetic Dystrophy (yet another chronic pain disorder - pain 24/7) I find it amazing that all of these "highly educated people" (and I use the term "highly educated people" very loosely) know sooooo much about diseases & disorders. In my opinion thier "knowledge" is all in thier head - pun intended w/ very much sarcasm, I might add! I say let each & every one of these people to walk 1 day, or even 1 hour for that matter in any one of our shoes that suffer from these so called diseases that only exist in our heads!! I would love to hear thier opinion then. I've always said I wouldn't wish my disease on anyone, not even my worse enemy. But I'm changing my mind because I am so sick (no pun!) & tired of all the doubters that believe I'm making this up, that it's all in my head!!! Do you feel pain when you break your leg? give birth? fall & hurt yhour back? Well.....to bad, it's all in YOUR head!!!!
First, where do you think pain is? It is all in the mind, but so is vision, taste, hearing, touch, etc.
If someone is in pain, they deserve the ability to apply any technology to alieviate that pain. If someone else is abusing that technology or medicine, go after the abuser.
Tiffany and BLong should be allowed to try this new drug as long as it is not going to damage their bodies worse than the effects of the pain they suffer.
I have fibro and also narcolepsy. Xyrem takes care of my sleepiness by making my sleep better at night. I used to wake up 16 times an hour, which meant I could not go into deep rejuvenating sleep. I had fibro before I had narcolepsy, and was diagnosed with it about five years before the narcolepsy got bad.
Saw a rheumatologist that said, indeed, fibro is all in our head. However, let me explain. The reason regular pain meds do not work with fibro is because regular pain meds dull the pain going to the brain to be known as pain. fibro is in the brain, in that the touch of a finger can be felt in the brain as a pain. so regular meds can't dull it before it gets to the brain. that doctor merely touched me in certain places, I went through the roof in pain. and the next day I could barely walk. she knew where to touch it, to be sure. she also said that fibro can be caused by sleep disorders, she said if you disrupt someone's sleep in a certain way over and over again, you can cause fibro. That's why Xyrem is good for both. both are caused by sleep disorders.
you could hook someone up to an EEG, touch them in a pain spot and watch the pain on the EEG, so we now know it is not "all in your head". It has a verifiable proof on an EEG.
And Xyrem as a party drug ? Yeah, let's all take our /Xyrem and sleep through the party. Date rape drug? You risk life in prison, give Xyrem to the wrong person and they could have an apnea and die. It used to be sold in health food stores back in the 70s for pennies.
Maybe some people should educate themselves about the disease before they make inaccurate comments about it only existing in the sufferer's mind.
What a novel idea - educate one's self!!! Sure are alot of people out there that could benefit from this!
From Wikipedia:
This condition is often linked to psychological trauma, so often, quite literally it's all in the patient's head. Not to say the pain doesn't seem very real, but suggesting it might not be a physical problem.
Bravo! This is the point that I've been trying to make for years; and the point that I think a lot of people try to make, but don't get the words out properly. It's treated with a psychiatric drug! It's a psychological problem that manifests as physical. Most of the time, anyway. Not saying that there can't be exceptions. And before anyone gets on me about blah blah blah not living with the disease, I have a friend who has fibro, and I am well aware of what she goes through.
FROM WIKIPEDIA. Thanks for the medical diagnosis, Leee. Do you get your meds from a bubblegum machine?
I apologize but anyone who uses wikipedia for any of there facts and actually believes them has gone off the deep end. Next time your on wikipedia do me a favor and look for a small blue edit button on the bottom of the page. you will also notice that you can find things in there about pterodactyls being alive and well. Ha. People think this stupid @!$%# up because of you morons who will believe it without a second opinion. My mother has fibromyalgia and I know that s**t isn't in her head. its very real. And quit using wikipedia dumbasses
Apparently Wikipedia is the only reference book neccessary to become a doctor! Excuse me while I go look it up & get ready to start my own practice. Sincerely, Digar518, MD.
You, along with many practicing doctors are not up to current medical science on chronic pain disorders. You search online and read the old standard textbook info or data, and think that is it...but then most are not informed on new studies and journals written by specialists who know what the heck they are talking about.
Do not pretend to think you know something, just cause it was written online somewhere. It does not make it true.
There is a rheumatologist in Sioux Falls, SD that is a new doctor "up" on the newest research. She has told me that if you disrupt someone's sleep in a certain way every night, you will cause fibro. It has something to do with sleep disorder and pain receptors in the brain. Just as narcolepsy has to do with the GABA receptors in the brain, fibro is similar. Example: take someone with narcolepsy and fibro (me) and give them gabapentin for pain. You can knock me out for hours. Because they are similar receptors, and my sleep receptors are deficient in orexin. I went to see this doctor to rule out lupus. Thankfully I do not have lupus. But she sure knew her stuff about narcolepsy and fibro.
If you consider that the perception of pain includes the neurons in your brain and therefore the neurotransmitters, such as serotonin and norepinephrine, fibromyalgia DOES include an element in your head. However, ALL pain does!! Because it includes the neurotransmitters, and chronic pain includes an element of a cyclic nature of depression (both physical and mental), antidepressants are frequently used in an attempt to break this cycle and attempt to help with the pain. Also, tri-cyclic antidepressants are often used at night to assist with the REM sleep patterns, so you don't wake up feeling like you were hit by a mack truck.
I have fibromyalgia (diagnosed about 15 years ago, with 15 out of 18 trigger points) and have basically kept myself under control on the flu-like pain with 600mg 2x/day of guiafenesin (over the counter medicine), lots of calcium and vit c for muscle spasms, and plenty of water all day. I still have flares, and can't do a LOT of the stuff I used to do. I get so tired and have to stop sometimes in the middle of food shopping and just finish another time, but it's a lot better than it was.
Try these over the counter meds before you go with the Lyrica and stuff, if you haven't yet or if they don't work for you. It was a life saver for me!
Yes, fibro is "in your head", but it's everywhere else, too! So is ALL of EVERYONE's pain!
Don't let the brainless idiots get you down. They don't know any better, they just think they do, and need to open their 'mouths' about it. The thing that irritates me the most is that I was in Mensa, and the fibrofog takes my words away from me and makes me sound stupid sometimes. So annoying!
One point that WE are trying to make is that ANYONE can post to Wikipedia!!! Do you all understand this?! Try going to WebMD or a more reputable site than Wikipedia! You can NOT necessarily believe everything you read there! You would be much better served going to the Fibromyalgia websites to read the more up-to-date information, as they will have the most recent research info, also. Wikipedia will have little of true value and can be very wrong. Get it?!!
Bechtel, you are just plain ignorant. Fibromyalgia is a 'syndrome' not a disease. Get your facts straight if you intend to participate in these message boards. And heaven help you if you get this!!
In the American Thesarus...syndrome has the same meaning/may be replaced with......disease. Any questions? TALK ABOUT GETTING YOUR FACTS STRAIGHT!!!! And Heaven help you - period, cause Lord knows YOU need it!!!!!
The thesaurus is not a medical text. Medically speaking, when you don't know what causes something, you call it a syndrome. When it has an established cause, it graduates to disease.
In response to Bechtel-1397456...I believe that it is possible to prove that a drug is effective for the very real disease of fibromyalgia. This disease does exist! It is foolish to believe that it is only in a persons head! I was misdiagnosed several times before I was given my true diagnosis, which is Lupus/fibromyalgia, and arthritis. It is best to not pass judgement on an issue which you obviously have never experienced.
One more thing, I do have fibromyalgia and it was caused by having 2 back surgeries in 2 years. So it can come from any kind of trauma, be it mental OR physical.
Well said. There is now a school of thought this is a neurological disfunction and being treated with some success with medications geared towards ADD and MS. I recently read of a study with Ritalin that promised some interesting results.
I guess when all is said and done those people who chalk it of as "in your head" really lack compassion for others who they do not understand. What a sad life you all must lead.
I've taken ritalin for my narcolepsy, I might as well have had a sugar pill. It did absolutely nothing at all for me. Dexedrine was helping me stay awake, so I could function at work. But after 4 hours, the drop afterwards was horrible. I grew tolerant to dexedrine in a matter of weeks. The stimulants don't attack the problem, which is horrible lack of normal sleep. They mask the symptoms. I now take Xyrem and I am not sleepy anymore, and it also helps my fibro. Fibro IS a neurological problem, due to a lack of chemicals to attach to the pain receptors to make pain feel normal like everyone else feels. Our brain feels paiin when a certain place is touched or moved. So pain meds won't work because it is not pain going from a hand to the brain, it is considered pain IN the brain. Xyrem works for this, as it straightens out the chemical needs in the brain between sleep and pain.
3 car accidents did it for me.
News you can use for potential date rapists.
Bad news for date rapists, if you give enough Xyrem to completely knock them out, you have them far enough "out" that they can easily die. If you give them less than enough to knock them out, they may appear drunk (and sick) but they can still move about and knoww what is going on around them. I take my Xyrem at bedtime and I can carefully walk to the door to let the dog out, I can go to the bathroom if I need to. I can wake up when the flight for life helicopter goes over my house , as I work at the hospital and wonder who's going out. There are other drugs that would be much better and safer date rape drugs. Xyrem would probably just cause coma and death if you gave them too much.
Too those fibromyalgia sufferers who rant about how "it's not just in my head!," please do not demean those people who have mental illnesses by somehow implying that this is a lesser form of disease. My sister has struggled with psychosis for years; a disease that is entirely "in her head," but no less real in its devastating impact. So what if fibromyalgia is"just" in your head? Pain is pain: ask any migraine sufferer, or amputees who feel debilitating pain in limbs that aren't there. Are you humiliated by having a "mental" as opposed tho "physical" illness? Or maybe it's just the insurance payout: insurance companies should be ashamed about their unfair treatment of mental illness patients.
For me it has nothing to do with the stigma of a mental vs a physical disease. Perhaps you are reading things that are not there. I object to anyone who claims something does not exist or is trivialized because of their lack experience with it. We all have pain both physical and mental. I strive not to judge due to any handicap.
i feel for you and your sister, i hope that she is doing as well as possible. i don't believe it to be all in my head because all of anti-depressants & fibro meds have not worked for me. i am also effected badly by rising, falling barometer pressure, this is when i have my worst pain. that is not my head, it is outside forces at work on my body.
Thoms1575137: FYI. Insurance companies reject individuals w/Fibro., because it's considered a pre-existing condition. Imagine being discriminated against by the medical community, friends, family, and the ins. co's. for a syndrome that doesn't exist--or at least that's what some uneducated experts tell us. I guess we'll just have to wait until someone famous is diagnosed w/Fibro. before it's given the appropriate attention it deserves. In the mean time, many of us will continue to struggle to make ends meet, raise a family, remain gainfully employed--while hiding our conditions so we won't be discriminated against for having an invisible disability. Sad, very sad.
I hope your sister is doing well. I was married to a man that became schizoaffective 12 years after we were married. He was psychotic, he robbed our bank, found innocent due to disease or defect. I know the difference between a mental illness, and a syndrome that causes pain intolerance. Luckily for me, I am based in reality, whereas someone with a mental illness has trouble seeing things normally. He used to pull off his toenails because he didn't want to cut them, then would walk around in bloody socks. It was horrible. He had the opposite problem, along with his mental illness, in that he knew no pain.
Okay, for the record, ALL PAIN is "mental." It's just an electrical signal until it reaches the brain, where the brain interprets the signal as "unpleasant." The stronger the signal, the stronger the reaction. But nothing starts until the signal reaches the brain. That's why they knock you out with anesthetics before surgery- disconnect the brain and the pain is absent to the patient. All pain is mental.
Back to the issue. The FDA might not approve this drug that seems to have positive effects on fibromyalgia due to the Pharmaceuticals inability to control misuse of this drug? It is a controlled substance-it will not be on the store shelf. I don't understand why it is the responsibility of the Pharma to police abuse. It is not the physician and pharmacist that prescribe?
Because right now, Jazz Pharmaceuticals is making a freakin fortune. They charge me 2400 dollars A MONTH, for Xyrem and I pay 35.00 copay. There is no cap on what their monopoly is receiving. They are the only place selling it, and if you don't have the money or insurance, you are out of luck. If they have 12 different places selling it, it will drop in price. Xyrem used to be sold in health food stores for a sleeping tonic. It used to cost a couple of dollars a bottle. But since Jazz has taken it over, its risen in price every month. I was close to the cap on my insurance costs due to Xyrem. 2400 a month times 48 months. whew
My wife has had this disease/syndrome now for about ten years...started after a surgery. I can assure you that it is not all in her head as some of the posting would like you to believe. Do not take it out on the suffering because science hasn't been able to totally figure this out yet. Maybe if the doctors stopped giving out drugs like candy people would feel a whole lot better....It's the ignorance of people like Bechtel and Lee that really hurts the people with this debilitating disease...
Hi Paul: Your comment was interesting. I have had fibromyalgia for several years now, but it became worse after I had back surgery and had bone morphogenic protein instilled in my back, which is supposed to rebuild the damaged bone. I had a number of problems that increased my nerve pain and made me break out in a horrible rash on my legs. I also became extremely tired and felt truly horrible. It has been 2 years since my surgery, and now the fibromyalgia is worse than ever. I hope your wife is doing okay.
All of these drugs need to stop being prescribed by general practitioners....jack of all trades master of none. Just because you are a doctor does not make you an expert on all drugs. In some cases once you start taking these drugs it is almost impossible to get off as withdrawall causes the same effect as what got you on the drugs in the first place.....
Xyrem can NOT be prescribed by most doctors! Physicians must have participated in an educational program and be on a registry before they can prescribe it. I'm both a pharmacist and a user of Xyrem, so I've had a little experience with this issue.
it's not known exactly what causes fibro, but when people say it's in our heads, they feel it is something we can change but don't want too. it is the CNS sending the wrong signals to the brain, these signals don't start in the brain they come from whatever area of the body is distressed. so i don't believe it is in the head, it only finishes its journey there.
This drug if it worked as it says, would help millions suffering from Fibromyalgia and Arnold Chiari Malformation which causes FM or FibroMyalgia-like symptoms. The risks are like many risks with other drugs out there that can be abused.
For those who think it is only in the mind? ...may you or your family member or any loved one never get these disorders...because you would think twice then about your mis-judgement, and lack of empathy. You must be very young, very uneducated, or some male pig to say such a thing. (I know when I was younger I passed judgements too easily...I know for certian it will catch up to you some day. Whether you believe in karma, or not...sh*t happens to everyone.
Hey, I may be male, why do you call me pig?
There ARE male chauvinists and you KNOW it. If you aren't one of them, you would not be upset. You who took offense...which category do you fall into? I think you answered it already.
Sorry, it is a known fact of science that men do not process with both sides of the brain, especially the right side of the brain, as women do. That is why women bear children, nurture, provide all the support to most men who are successful. Try living without a woman...you would be surely lacking.
oldschool, glad I'm not the lucky man in her life! LOL
It is obvious there is no liteness of being here.
That goes for you too david-1313343, just what I said to the other "man". But you are not a real man. Real men don't have ego's so easily flustered, that flap whenever a woman speaks her mind. I wonder do you beat up on women? Do you degrade your GF? Do you belittle her?
Or are you a big enough man to support her no matter what she goes through. I bet you are the man described in the first paragraph. Read it, and see how much does apply. And read my response to the other man who was SO easily offended by my Pig comment.
Go do some meditation and reflect on how to try to become a decent human being, for once.
Take a deep breath, see what meds you forgot, take them. Come back in an hour, read the drivel you've written. It will be theraputic, really.
If this drug truly is helpful for those with various symptom "syndromes", I hope it will be available to them quickly. I have a few issues myself- but I'm satisfied with my treatment program at the moment so wouldn't be anything I'd want to try.
WHY so much hullaballoo about possible misuse? ANY controlled substance medication has the same abuse/diversion potential. Isn't there a widely handed out as office sample sleep med that can cause (and HAS caused) people to even DRIVE in their sleep? There have been plenty of stories about "sleep sex" with some of these, but I've yet to see those blamed for "date rape" or calls for tighter control.
Basic common sense now- Keep your meds in a safe place, away from common areas (bathroom cabinets, kitchen cupboards) that someone can easily snoop in, COUNT your meds and KNOW how many there are supposed to be at any given time, a LOCK BOX is a great idea for many meds that can be used in a recreational manner, one guy I know keeps his in his locked floor standing toolbox. ONLY carry what you NEED for a day or a week in one of those little pill boxes. Some people even keep their main bottle in a safe deposit box away from home and visit once a week to fill the little pill box. AND there honestly is NEVER a reason for ANYBODY (other than a potential caretaker, say spouse or adult child- gotta use some judgement there) to know what kind of medications you take! Your meds should NEVER be the topic of light conversation, even in a "support group" for whatever, it's enough to say "my pain med, or my sleep med", you DO NOT have to spell out for anybody exactly what they might find in your home or your purse!
Please excuse the personal responsibility rant, didn't mean for it to come out that way. I just feel if this drug will be useful for so many people, they need access to it.
oldschool-1859437 you proved my point 100%. Go grow up, or learn to think of someone else before yourself, and learn to use your brain to it's fullest potential, if you are capable. You are a testosterone bag of skin.
I surmise this is your attitude towards all women. I really feel sorry for you, and any woman who is in your life.
and on, and on, zzzzzzz
You aren't worth my time anymore. Go smoke whatever drug, or whatever you do that is killing your brain cells rapidly.
Have a good day you two young male children. May you eventually grow up into adult men who are worthy of something good in life, and that you give to others in a non-chauvinistic attitude of being.
Oh don't let people make you mad on newsvine! It's anonymous people taking jabs at other anonymous people to see if they will respond. That way they can lay in bed thinking about how awesome they are that they made somebody somewhere mad.
"You are a testosterone bag of skin." So, Liteness, you do realize that women produce testosterone, right?
"You must be very young, very uneducated, or some male pig to say such a thing. Go smoke whatever drug, or whatever you do that is killing your brain cells rapidly." Great ad hominem. Why bother arguing the facts, or using logic, when you can just make unsubstantiated attacks against the poster. Me, I'm a college graduate, middle-aged, and while male, I am a caring father and supportive husband who helped put his wife through nursing school so she could have a fulfilling career. I am the primary caretaker for my daughter.
So, when I say you are a female chauvinist, who seems to assume that men cannot be caring because of their hormones, and who buys heavily into the ideas of brain hemisphere structural difference resulting in functional differences (highly suspect, and not widely accepted in current science; most of the information on this subject constantly repeated on the internet is based on nearly 20-year-old studies), you'll hopefully understand that this is a logical inference from what you yourself have stated (we left-brained men are highly logical, you know), and not simply an attack on your person. Oh, and as far as brain differences, were you aware that human male brains are, on average, approximately 10-12 % larger than female? (Schlaepfer T.E., Harris G.J., Tien A.Y., Peng L., Lee S., Pearlson G.D. Structural differences in the cerebral cortex of healthy female and male subjects: a magnetic resonance imaging study. Psychiatry Res. 1995 Sep 29;61(3):129-35) Sorry to use a 15-year-old study, but the size hasn't changed nearly as much as our understanding of the functions.
As far as the psychological and medical implications of FM, my wife, the BSN (that's a Bachelors of Science in Nursing) has dealt with FM patients, and I personally know someone with the syndrome. The pain, whether generated in the nerves and transmitted to the brain, or originating there, is all too real to the people who suffer with this condition. Any treatment that helps will be appreciated, whether a pain med or a psych med.
Can't believe I forgot to include these gems: "I wonder do you beat up on women? Do you degrade your GF? Do you belittle her? Or are you a big enough man to support her no matter what she goes through. I bet you are the man described in the first paragraph." Nothing like accusing someone, with absolutley no evidence, of emotional, mental, and even physical abuse of their girlfriends. Having been on the receiving end of all three, I can say that this kind of abuse comes from both sides, and that there are women out there who like nothing better than to talk a man down, insult him, belittle him, and even physically attack him, because they know that few cops in the world will believe a man who says "she hit me," and few men in the world will admit they were abused. So, liteness, how long were you withthe person who gave you such a low opinion of men?
As with all drugs that are controlled, Topamax, Lyrica, Oxycontin, etc... the pharmacies have stringent measures on filling maintenance prescriptions from mail order insurance. I used to have to fight in order to get my Topamax for my migraines and when Lyrica came out I had to fight to get that too. Why is it that the ones that need the medications the most have to fight to get it when the abusers can find ways to get a hold of it off the street for recreational purposes? This makes it harder for those of us with Fibromyalgia and other chronic pain issues to get new medicines when the old ones become no longer viable options due to our bodies complacency/tolerance to the current medications being used and not being able to increase the dosage of the drug taken. Also one medicine does not work for all Fibro sufferers so those who have tried Lyrica and found it lacking and then switched to Cymbalta and found that it caused or increased their Restless Leg Syndrome, keeping them up at night compounding their insomnia issues, they now have Savella, but that still does not help the RLS completely. This new drug would help the sufferer sleep better and avoid having to take clonazepam too. Less side effect potentials. Read up on Fibromyalgia and you will see that you have other issues along with the tissue pain and not everyone is the same. Not everyone came about their Fibro the same way, therefore not everyone is treated medically the same way. Mine did not come from the way I ate that is for sure.
I personally was diagnosed with fibromyalgia in the 90's & it has been the challenge of my life. The muscle cramps, aches, & pains--the loss of strength & agility--the lack of sleep, there is no relief some days. I am strong willed & determined. Thanks to other illnesses/surgeries, I've had pain that would break the average person. Hands down, fibromyalgia has been the worst. Years ago, I learned bio feedback and willpower techniques to lessen pain because I dislike narcotics & traditional pain killers--and it is hard as hell to admit I cannot control my fibromyalgia pain with bio/willpower techniques. And I am not alone--many sufferers have tried all the techniques & every new drug or homeopathic cure to lessen the pain.
As for Wikipedia: Information on Wikipedia is provided by laypersons adding the content from something they have read or transferred from another source. Many of the "sources" are incorrect and/or outdated. If you want current, correct information on fibromyalgia, you need to do real research.....
as scientific research has shown:
The clear cause of fibromyalgia is not known. Those affected experience pain in response to stimuli that are normally not perceived as painful. Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients. Levels of the brain chemical serotonin are also relatively low in patients with fibromyalgia. Studies of pain in fibromyalgia have suggested that the central nervous system (brain) may be somehow supersensitive. Scientists note that there seems to be a diffuse disturbance of pain perception in patients with fibromyalgia.
Also, patients with fibromyalgia have an impaired non-Rapid-Eye-Movement, or non-REM, sleep phase (which likely, at least in part, explains the common feature of waking up fatigued and unrefreshed in these patients). The onset of fibromyalgia has been associated with psychological distress, trauma, and infection.
My Fibromyalgia symptoms started a year after an auto accident 9 yrs ago but with neck pain issues and neurological symptoms such as dizziness, nausea to the point of near incapacitation. Many people suffering post-trauma from accidents who have chronic pain that goes untreated turns into Fibromyalgia (FM).
I was diagnosed with a certain spinal cord cyst, besides disk herniations, then bony anomalies in the skull effecting the brain and pressure on the brain, whether from a push effect from valsalva maneuvers or heart rate elevations vs. a pull effect from a tethered spinal cord at the base. Then my c-spine is not supporting my skull, so I have a form of cranial settling or basilar invagination, but not that serious yet.
The FM symptoms for me cannot be treated with serotonin-reuptake meds anymore due to spasms and jerking which was not normal for me prior to all this, so I take Lyrica and different pain meds. I have become hyper-sensitive to most meds and take smaller doses, especially any antidepressant used for pain or depression that reuptakes serotonin or norepinephrine or even dopamine as in Welbutrin.
Fibromyalgia wreaks havoc on the entire nervous system and is often co-existent with many other diagnosis' so doctors are overwhelmed and incapable to deal with them. If you see one kind of specialist he/she has tunnel vision into their own area of specialty and does not look at the entire body as a whole.
Chronic pain is a medical problem for many women, and they "think hormones are the cause" a recent article stated. How many times has the medical community said this when the truth of the matter is...they just do not know so they use the old fall back of hormonal issues. There are men with FM, but that is glossed over. Meanwhile all we can do is try to get help to treat us for symptoms only, ie. medications.
I also read about the elevated substance P and low serotonin. Yet I have not read anything further where they understand enough to know the cause of Fibromyalgia, regardless of how or what kicks it in, and effects us so differently, and is treated so uniquely to each individual. Then no area of medical specialist has done a Lumbar Puncture (again) to check these proteins and other substances, other than ruling in/out Multiple Sclerosis or Lyme disease.
On a positive note, it is now an official diagnosis and more recognized by primary physicians, whereas 10-15 yrs ago they treated patients worse than now.
@ JY & liteness, and all, the sad part of all of this is that there are so many diseases/syndromes out there that are misunderstood, not properly recognized, mistreated (if even treated at all!), diagnosed improperly, the list could go on & on. Then you have people that perpetuate all of the above. My heart truly goes out to anyone who suffers from what I have heard people refer to "invisible diseases" It's bad enough that we suffer from pain, insomnia, loss of mobility, basically our "normal" life as we once knew it. On top of all of that, we also face the ignorance of people that think w/ thier "invisible brain" that these diseases/syndromes don't exist or are in our heads. Like I said earlier, let them live one day/hour in our shoes (if you're able to wear them - I can't) then let them explain this imaginary pain & misery!!! Well I feel better, I got this off of my "imaginary mind"!! Best wishes to the both of you & to all of our "imaginary friends" that suffer daily, weekly, monthly & yearly <3
Just for the record, I suffer from RSD (Reflex Sympathetic Dysstrophy) This is a result of me breaking my ankle 10 years ago. I went thru the normal procedures as anyone would w/a broken limb. Everything was fine up until 7 years ago. All of a sudden my foot/leg began to swell & hurt like hell for no apparent reason. It took 2 years of many tests & several surgeries to finally get my diagnosis in 2005- RSD. Since then, I've received every kind of pain block, acupuncture, physical therapy, I even went thru a trial period of a SCS (spinal chord stimulator) all to avail. So here I am in constant pain. What used to be a very productive life has now whithered away, I am a shell of the person I used to be. I'm not looking for sympathy not in anyway whatsoever, I'm just trying to explain my "imaginary illness"!
Digar518 you wrote: "So here I am in constant pain. What used to be a very productive life has now whithered away, I am a shell of the person I used to be."
How true this is for so many of us. It is an invisible disease too. No one understands unless they experience it themselves. There are so many times I thought I would've been better off having cancer. I even told my Primary this. Cause then it would be understood, treated.
When the CNS is haywire sending continuous messages of pain to the brain, there is no relief. Meds may take the "edge" off much of the time if we are lucky, but some symptoms such as "Trigeminal Neuralgia" that I get...no med touches it. You just have to hang on and ride it out as best you can and the pain is the worst I've ever experienced.
When it comes to the brain, nerves and CNS in general or even psychological, the so-called "mental illnesses", the depression too that uses the same neural pathways to the brain, the medical profession is far, far behind in knowledge. The brain and how it works with the body remains much of a mystery.
Imaginary indeed! It is just ignorance. One of these days medicine may catch up. Hopefully.
They new research says that fibro is a sleep disorder. Over 60% of people with narcolepsy have fibro also. My rheumatologist says that if you disrupt someone's sleep in the same way, over and over, you will give them fibro. I'm just wondering who the poor person was that volunteered for that research.
I have been taking Cymbalta for a couple of years. It helps, along with the Xyrem . But the main problem with narcolepsy is the receptors for sleep are deficient in a chemical, also the same with fibro, the pain receptors are deficient in something.
I have been diagnosed with fibromyalsia and most definitly it is a real disease. Why would you let people know that this new medicine has this bad ingredient in it so it can be taken advantage of. Common sense people, common sense.
I received this article from a good friend who knows about my fibromyalgia. But, I was not totally prepared for the comments.
In 5 days I will turn 62, what used to be called "old" when I was just a child. But, 62 is not really "old," any longer, since so many people in their 60's, 70's and even some in their 80's can hike, jog, cycle and cross-country ski these days. But, while I dream of this, I know I can't. And as late as my early 50's I tried to do serious hiking until I could not any longer.
Over 30 years ago, I used to joke with my friends and tell them I felt like I had the body of an 80-year-old woman. Of course, I knew I was rather dumb to make light of it, because, while I tried so hard to put on the smile of a healthy 30-ish woman. I hurt so much. And today, when I talk with my doctor, I ask him "Have you ever in your life known a woman with so many physical ailments or problems as I have?" That is my main reason for writing. Usually, in my experience, a person who truly hurts with fibromyalgia has other problems as well.
I have had migraines most of my life, as early as age eight. More as a teen, but they really became heinous after I turned 40. Since then, I have suffered as many as 4 severe ones in one given month. Nausea was insane, but the pain was and is far worse. Basically, 25 years of my life, I was a "guinea pig" for my doctors. No medication helped and I have tried them all, as well as accupuncture, accupressure, bio-feedback, yoga, and every med from anti-depressants, anti-anxiety, you name it, I have had it. Only knocking me out and letting me sleep gets me over the worst of 3-5 day episodes. But, now days, doctors all avoid by law, giving injections that actually knock you out. I also have daily tension headaches.
I also suffer from severe IBS, Raynauds Syndrome in my fingers and toes, and have just learned that I am one of the 5% of the population who has a malformed pancreas. In the womb, the two ducts which lead out of the pancreas, unite and form one duct. I have two ducts. That might be why I never seem to get the nourishment I need though I eat quite healthy. It might also be why for the first time ever, I went to 100 in the blood glucose, indicating I might be pre-diabetic. Or, the two ducts may not be the cause.
Here are some things I suffered with, as I try to grasp onto why I suffer from severe fibromyalgia.
As a child, I had severe pains in my legs, which doctors called, "growing pains." Silly, since I only reached 5' in height by 7th grade. I began my menses early before turning age 11, but was 14 before I began to develop. When I was in my 30's, I worked on a CRT, then computers, and ended up with carpal tunnel syndrome. Only, it began with my right wrist, then in my left. I suffered with that. My neck always seemed stiff and hurt terrifically just beneath the occipital ridge of my skull, making my headaches and migraines worse. Then I visited a Neurologist and every trigger point I yelled, "pain." I had attributed those pains as part of my job.
Since that diagnosis in the late 1980's, my fibromyalgia, has spread, like a dreaded curse. My right shoulder and blade came next, then, oddly, my left shoulder and shoulder blade. It has literally taken over my body at 61. I have intenselower back pain, and both my hips and thighes ache, almost like a bad "toothache" in your legs. That is what my father and I used to call that kind of pain. Now, I cannot sleep in any position but on my back. But, like others, I never get good rest, since I wake up easily during the night, either due to the pain in my body, or because of possible sleep apnea, which I need to be tested for. I wake up gasping, unable to breathe as if wakening abruptly from a nightmare, which do not have any cause. Of course, with the lack of breath, comes the immediate migraine. So, it takes me till about noon to actually get physically out of bed, partly from exhaustion and lack of sleep, and partly, because upon wakening, I feel the intense pain in my hip and thigh and it is difficult to pull myself up. My hands and fingers ache, my whole body hurts. My 91 year old mother finds it difficult to believe. My father lived till 2006, when he was 95 1/2 years old. This is not the life I thought I would live when I was only 30. And even, at 50, I did not hurt so badly, nor feel so crippled, despite not being actually crippled.
It is not imaginary, but my ex-husband was so frustrated that hecouldn't help me,nor did he understand fibromyalgia, that the worse I got, he finally just gave up on me, and left. I must say that the mental anguish of that has had some effect on how bad my pain became. I have tried medications, and sadly have to report to my doctor, that Cymbalta does not work. As, well, be careful you who have fibro+ because I seem to stumble more easily, and have had two pretty bad falls. The only good thing I can say, is that my father's mother suffered with migraines and had pain in her hips and legs, also, making me think, perhaps, it is a genetic flaw/disposition.
My parents were both born in Sweden, and my father was raised to be "tough." I never knew that in his 70's when he cross-country skiied with his grandchildren and me, he was hurting in his legs as badly as he revealed to me before he died. But, he stayed away from doctors and he kept quiet, and silently suffered. I will never know if he perhaps had fibromyalgia, or not. I only know I do, and would be thrilled to have a couple of days without this hideous pain. It is a sad and troubling disease, and it is sad when you have to admit, to your grandchildren, or children, that you just hurt too much to do something fun. Be glad, though, that there are some people in the world who understand, and befriend you despite it.
Bechtel and Lee, you two really shouldn't be here. Just the last time I went to my scout camp I had a leatherwork instructor who had fibromyalgia. Not only that, but she was also in her 80's. She could barely walk, with or without a cane, and she had to deal with all of us 12-17 year olds. So, just cause most of the people in the world are idiots (including doctors), doesn't mean that fibromyalgia doesn't exist. So when you don't know hardly anything about what you're talking about, don't post. And don't use wikipedia either. Seriously.
i have lived with fibromyagia for 20+ yrs. any new possibility of an new form of relief from constant pain and idiot drs. thinking i'm trying to just get high is exciting. the last new fibro drug left me with massive weight gain and when i was taken off it, my epilepsy got much worse. alcohol mixed with any sedative, painkiller, tranquillizer or barbituite is an easy way for rape to happen. alcohol alone will do the trick, sometimes just a vicious predator. it's not the medacations' fault, it's the sick rapists who do these things. so watch out and protect yourselves.
give the new medication a chanch for all of us who are desperately trying to keep out of ERs!