Archive for the ‘Medications’ Category

But when you go to bed..

Posted by Kelli on January 24th, 2010


Some days are pretty easy days. Nothing major to do around the house; no laundry, no vacuuming, no chores to run. You got to take it easy; making a dozen simple phone calls, doing a bit of prep for tomorrow’s dinner, surfing the web doing casual research, and so on.. With no major pain, no cramps or seizing, and no other real fibro symptoms. So at the end of your day after relaxing by watch your favourite show or two, you get up setting the dishwasher to go and turning out lights wishing every one a good night on the way to bed.

You are all well and good until you decide to dump yourself into bed. Bad move. Crashing into bed like that, so suddenly with everything finally completely relaxing at once and your walls are down, the onslaught of sensation is overwhelming.

It is at this point you realize there is no real “easy” day. Some days the pain is not so bad & on some of those days, we handle it better and think we are ok for a bit.

It is that time at the end of that “easy” day that you know you will always have some pain each and every day. Some days it’s nasty, some not so bad and some days we can handle it better than others – either emotionally, physically or with the help of medicine. We will always have pain, but we also look forward to tomorrow for another “easy” day. We also realize that while yes, we have pain each and every day but we also get through it each and every day. We survive and even thrive despite this disease and what it does to our minds and bodies.

We are strong.

This post started one way in my head at 1am but my fingers decided differently. If & when my mind and fingers ever decide co-operate, I will get to that post that I meant to do. Hopefully it doesn’t stay in my head all night half written *laugh*

Coping With The Holidays

Posted by Kelli on December 21st, 2009


Coping With The Holidays
By Kelli Ellis

I am my own worst enemy. Like many others with Fibromyalgia and Chronic Fatigue, I find the holidays a highly stressful and painful time of year instead of the joyful and happy time it should be.   I am too focused on the perceived expectations of others instead of the reality of my limitation and restrictions..  I know many of us want to accomplish what our bodies are simply not capable of, so we have to adjust our outlook and re-evaluate our priorities. The holidays are all about spending time with those we love most – keeping time and energy for what we hold most precious and dear. Doing so will help reduce the stress and thus the pain and emotional issues that crop up at Christmas.

Pace Yourself.. 
When you think “I’ll just  visit 1or 2 more shops, go up 1 or 2 more aisles, wrap 1 or 2 more presents, bake 1 or 2 more trays of cookies or do that 1 or 2 more things.” – Don’t! Stop before you get to that tired or hurt point. Don’t deal with a fibro or cfs flare, prevent one.

Decorate, but not too much..

  • Have a smaller tree with few decorations.   I have invited over the nieces in past and we made an afternoon of putting up the tree.

  • Have someone put up the outdoor lights.
  • Get a nativity scene that is pre-made as one unit and/or lightweight, so you don’t have to lug many pieces.  I have a smaller plastic Precious Memories one (which the kids love to play with) and a small water fountain of Joseph, Mary & baby Jesus.
  • Celebrate

  • Choose carefully to go only to 1 or 2 holiday parties, don’t accept every invite.

  • If you can, spend time with those you hold dear, not those who will cause stress.
  • Plan ahead how long you plan to stay and stick to it.
  • Always keep a supply of regular meds on hand, in case.
  • Delegate

  • Pass on some of the holiday chores to others so that while everyone shares the joy, they also share responsibility.

  • Cooking

  • Share these responsibilities or making an easier selection.

  • Do a pot luck dinner.
  • Choose a one dish dinner to limit the number of dishes.
  • Choose easier recipies.
  • Prep or make whatever can be done beforehand and refridgerate or freeze.
  • Keep to your normal eating habits as much as possible & do not overdo it on sweets and other foods.
  • Baking

  • Do a holiday cookie/snack exchange.

  • Bake cookies in stages – many recipes require overnight in the fridge.
  • Cheat – buy your cookies.. I know, not the same, but nothing’s the same anymore, is it?
  • Shopping

  • Online/catalogs/mail order gifts.

  • Gift cards & gift certificates.
  • Plan ahead, make a list & write it down.
  • Organize your trips into several short shopping trips.
  • Shop in the morning, or later in the evening when the crowds are thinner.
  • Start early – once I started on Dec 26th.
  • Take regular breaks to rest.
  • if you use a mobility device (cane, crutches, walker), take it with you even if you don’t need it yet
  • Use a shopping cart for stability, to carry parcals & outterwear.
  • Use a coat check if your mall has one so you don’t have to worry about your jacket.
  • Get salespeople for help if you can find them.
  • Always keep a supply of regular meds on hand, in case.
  • Wrapping Presents

  • Wrap using gift bags & tissue paper.

  • Take advantage of on-site wrapping services – many are for charity.
  • Holiday Cards

  • Do them well ahead of time like October or November,

  • Make labels so you’re not writing address after address, if even it’s ony the return address.
  • Above all – KISS! Keep It Sweet and Simple!

    Posted via email from Kelli’s Posterous

    Prescription Painkiller Addiction: 7 Myths

    Posted by Kelli on November 11th, 2009


    Prescription Painkiller Addiction: 7 Myths
    Experts Debunk Myths About Prescription Pain Medication Addiction

    By Miranda Hitti
    Reviewed by Louise Chang, MD

    Prescription pain medicine addiction grabs headlines when it sends celebrities spinning out of control. It also plagues many people out of the spotlight who grapple with painkiller addiction behind closed doors.
    But although widespread, addiction to prescription painkillers is also widely misunderstood — and those misunderstandings can be dangerous and frightening for patients dealing with pain.
    Where is the line between appropriate use and addiction to prescription pain medicines? And how can patients stay on the right side of that line, without suffering needlessly?
    For answers, WebMD spoke with two pain medicine doctors, an expert from the National Institute on Drug Abuse, and a psychiatrist who treats addictions.

    Here are seven myths they identified about addiction to prescription pain medication.

    1. Myth: If I need higher doses or have withdrawal symptoms when I quit, I’m addicted.

    Reality: That might sound like addiction to you, but it’s not how doctors and addiction specialists define addiction.
    “Everybody can become tolerant and dependent to a medication, and that does not mean that they are addicted,” says Christopher Gharibo, MD, director of pain medicine at the NYU Langone Medical School and NYU Hospital for Joint Diseases.
    Tolerance and dependence don’t just happen with prescription pain drugs, notes Scott Fishman, MD, professor of anesthesiology and chief of the division of pain medicine at the University of California, Davis School of Medicine.
    “They occur in drugs that aren’t addictive at all, and they occur in drugs that are addictive. So it’s independent of addiction,” says Fishman, who is the president and chairman of the American Pain Foundation and a past president of the American Academy of Pain Medication.
    Many people mistakenly use the term “addiction” to refer to physical dependence. That includes doctors. “Probably not a week goes by that I don’t hear from a doctor who wants me to see their patient because they think they’re addicted, but really they’re just physically dependent,” Fishman says.
    Fishman defines addiction as a “chronic disease … that’s typically defined by causing the compulsive use of a drug that produces harm or dysfunction, and the continued use despite that dysfunction.”
    For instance, someone who’s addicted might have symptoms such as “having drugs interfere with your ability to function in your role [or] spending most of your time trying to procure a drug and take the drug,” says Susan Weiss, PhD, chief of the science policy branch at the National Institute on Drug Abuse.
    “Physical dependence, which can include tolerance and withdrawal, is different,” says Weiss. “It’s a part of addiction but it can happen without someone being addicted.”
    She adds that if people have withdrawal symptoms when they stop taking their painkiller, “it means that they need to be under a doctor’s care to stop taking the drugs, but not necessarily that they’re addicted.”

    2. Myth: Everyone gets addicted to pain drugs if they take them long enough.

    Reality: “The vast majority of people, when prescribed these medications, use them correctly without developing addiction,” says Marvin Seppala, MD, chief medical officer at the Hazelden Foundation, an addiction treatment center in Center City, Minn.
    Fishman agrees. “In a program where these prescription drugs are used with responsible management, the signs of addiction or abuse would become evident over time and therefore would be acted on,” says Fishman.
    Some warning signs, according to Seppala, could include raising your dose without consulting your doctor, or going to several doctors to get prescriptions without telling them about the prescriptions you already have. And as Weiss points out, being addicted means that your drug use is causing problems in your life but you keep doing it anyway.
    But trying to diagnose early signs of addiction in yourself or a loved one can be tricky.
    “Unless you really find out what’s going on, you’d be surprised by the individual facts behind any patient’s behavior. And again, at the end of the day, we’re here to treat suffering,” says Fishman.
    Likewise, Weiss says it can be “very, very hard” to identify patients who are becoming addicted.
    “When it comes to people who don’t have chronic pain and they’re addicted, it’s more straightforward because they’re using some of these drugs as party drugs, things like that and the criteria for addiction are pretty clear,” says Weiss.
    “I think where it gets really complicated is when you’ve got somebody that’s in chronic pain and they wind up needing higher and higher doses, and you don’t know if this is a sign that they’re developing problems of addiction because something is really happening in their brain that’s … getting them more compulsively involved in taking the drug, or if their pain is getting worse because their disease is getting worse, or because they’re developing tolerance to the painkiller,” Weiss says.
    “We know that drugs have risk, and what we’re good at in medicine is recognizing risk and managing it, as long as we’re willing to rise to that occasion,” says Fishman. “The key is that one has to manage the risks.”

    3. Myth: Because most people don’t get addicted to painkillers, I can use them as I please.

    Reality: You need to use prescription painkillers (and any other drug) properly. It’s not something patients should tinker with themselves.
    “They definitely have an addiction potential,” says Gharibo. His advice: Use prescription pain medicines as prescribed by your doctor and report your responses — positive and negative — to your doctor.
    Gharibo also says that he doesn’t encourage using opioids alone, but as part of a plan that also includes other treatment — including other types of drugs, as well as physical therapy and psychotherapy, when needed.
    Gharibo says he tells patients about drugs’ risks and benefits, and if he thinks an opioid is appropriate for the patient, he prescribes it on a trial basis to see how the patient responds.
    And although you may find that you need a higher dose, you shouldn’t take matters into your own hands. Overdosing is a risk, so setting your dose isn’t a do-it-yourself task.
    “I think the escalation of the dosage is key,” says Seppala. “If people find that they just keep adding to the dose, whether it’s legitimate for pain or not, it’s worth taking a look at what’s going on, especially if they’re not talking with the caregiver as they do that.”

    4. Myth: It’s better to bear the pain than to risk addiction.

    Reality: Undertreating pain can cause needless suffering. If you have pain, talk to your doctor about it, and if you’re afraid about addiction, talk with them about that, too.
    “People have a right to have their pain addressed,” says Fishman. “When someone’s in pain, there’s no risk-free option, including doing nothing.”
    Fishman remembers a man who came to his emergency room with pain from prostate cancer that had spread throughout his body. “He was on no pain medicine at all,” Fishman recalls.
    Fishman wrote the man a prescription for morphine, and the next day, the man was out golfing. “But a week later, he was back in the emergency room with pain out of control,” says Fishman. “He stopped taking his morphine because he thought anyone who took morphine for more than a week was an addict. And he was afraid that he was going to start robbing liquor stores and stealing lottery tickets. So these are very pervasive beliefs.”
    Weiss, who has seen her mother-in-law resist taking opioids to treat chronic pain, notes that some people suffer pain because they fear addiction, while others are too casual about using painkillers.
    “We don’t want to make people afraid of taking a medication that they need,” says Weiss. “At the same time, we want people to take these drugs seriously.”

    5. Myth: All that matters is easing my pain.

    Reality: Pain relief is key, but it’s not the only goal.
    “We’re focusing on functional restoration when we prescribe analgesics or any intervention to control the patient’s pain,” says Gharibo.
    He explains that functional restoration means “being autonomous, being able to attend to their activities of daily living, as well as forming friendships and an appropriate social environment.”
    In other words, pain relief isn’t enough.
    “If there is pain reduction without improved function, that may not be sufficient to continue opioid pharmacotherapy,” says Gharibo. “If we’re faced with a situation where we continue to increase the doses and we’re not getting any functional improvement, we’re not just going to go up and up on the dose. We’re going to change the plan.”

    6. Myth: I’m a strong person. I won’t get addicted.

    Reality: Addiction isn’t about willpower, and it’s not a moral failure. It’s a chronic disease, and some people are genetically more vulnerable than others, notes Fishman.
    “The main risk factor for addiction is genetic predisposition,” Seppala agrees. “Do you have a family history of alcohol or addiction? Or do you have a history yourself and now you’re in recovery from that? That genetic history would potentially place you at higher risk of addiction for any substance, and in particular, you should be careful using the opioids for any length of time.”
    Seppala says prescription painkiller abuse was “rare” when his career began, but is now second only to marijuana in terms of illicit use.
    Exactly how many people are addicted to prescription painkillers isn’t clear. But 1.7 million people age 12 and older in the U.S. abused or were addicted to pain relievers in 2007, according to government data.
    And in a 2007 government survey, about 57% of people who reported taking pain relievers for “nonmedical” uses in the previous month said they’d gotten pain pills for free from someone they knew; only 18% said they’d gotten it from a doctor.
    Don’t share prescription pain pills and don’t leave them somewhere that people could help themselves. “These are not something that you should hand out to your friends or relatives or leave around so that people can take a few from you without your even noticing it,” says Weiss.

    7. Myth: My doctor will steer me clear of addiction.

    Reality: Doctors certainly don’t want their patients to get addicted. But they may not have much training in addiction, or in pain management.
    Most doctors don’t get much training in either topic, says Seppala. “We’ve got a naive physician population providing pain care and not knowing much about addiction. That’s a bad combination.”
    Fishman agrees and urges patients to educate themselves about their prescriptions and to work with their doctors. “The best relationships are the ones where you’re partnering with your clinicians and exchanging ideas.”

    Source: http://www.webmd.com

    Posted via email from Kelli’s Posterous

    9 Pain Pill Mistakes

    Posted by Kelli on November 7th, 2009

    9 Pain Pill Mistakes
    Prescription or Over the Counter, Pain Pill Mistakes Common

    Written By Daniel J. DeNoon
    Reviewed by Louise Chang, MD

    It’s been a hard day, and Joe’s back is killing him.
    His wife has some Percocet left over from a trip to the dentist, and there’s that big bottle of Tylenol under the sink, so Joe grabs a couple of each and washes them down with a slug of beer.
    Luckily for Joe, he’s a fictional character invented for this article. But there are a lot of real-life Joes out there making big mistakes with over-the-counter and prescription pain pills.
    Can you spot Joe’s mistakes? Joe didn’t make every mistake in the book. But he made quite a few.

    Here’s WebMD’s list of common pain pill mistakes, compiled with the help of pharmacist Kristen A. Binaso, RPh, spokeswoman for the American Pharmacists Association; and pain specialist Eric R. Haynes, MD, founder of Comprehensive Pain Management Partners in Trinity, Fla.

    Pain Medications Mistake No.1: If 1 Is Good, 2 Must Be Better

    Doctors prescribe pain pills at the doses they believe will offer the greatest benefit at the least risk. Doubling or tripling that dose won’t speed relief. But it can easily speed the onset of harmful side effects.

    “The first dose of a pain medication may not work in five minutes the way you want. But this does not mean you should take five more,” Binaso says. “With some pain drugs, if you take additional doses, it makes the first dose not work as well. And with others, you end up in the emergency room.”

    If you’ve given your pain medication time to work, and it still does not control your pain, don’t double down. See your doctor about why you’re still hurting.

    “This ‘one is good so two must be better’ thing is a common problem,” Haynes says. “Patients should follow the instructions their doctor gives. Ask before leaving the office: Can I take an extra pill if I still hurt? What is the upper limit for this medication?”

    Another bad idea is trying to boost the effect of one kind of pain pill by taking another.

    “There may be Advil, Tylenol, Aleve, and ibuprofen in the house, and a person may take them all,” Binaso says.

    This can escalate into a very bad situation, Haynes says.

    Pain Medications Mistake No. 2: Duplication Overdose

    People often take over-the-counter pain drugs — and even prescription pain drugs — without reading the label. That means they often don’t know which drugs they’re taking. That’s never a good idea.

    And if they take another over-the-counter drug — either for extra pain relief or for other reasons — they may be getting an overdose. That’s because many OTC drugs are combination pills that carry a full dose of pain pill ingredients.

    In Joe’s case, he’s taken a prescription pain pill that contains acetaminophen along with a second full dose of acetaminophen from Tylenol, putting him at risk of injury.

    Pain Medications Mistake No. 3: Drinking While Taking Pain Drugs

    Pain medications and alcohol generally enhance each other’s effect. That’s why many of these prescription medications carry a “no alcohol” sticker.

    That sticker shows a martini glass-covered by the international “No” sign of a circle with a slash. But it applies to wine and beer just as much as it does to spirits.

    “A common misperception is people see that sticker and think, ‘I’m OK as long as I don’t drink liquor — I can have a beer.’ But no alcohol means no alcohol,” Binaso says.

    “The patient should heed that alcohol warning, because it can be a major problem if they do not,” Haynes says. “Alcohol can make you inebriated, and some pain medications can make you have that feeling as well. You can easily get yourself into trouble.”

    Drinking alcohol can be a problem even with over-the-counter pain drugs.

    “Drinking is an issue with ibuprofen. It can lead to bleeding ulcers,” Binaso says. “And the FDA is looking into acetaminophen. It is very safe, but we have reports of people who had more than one drink and took more than one daily dose of acetaminophen for a long time, and ended up with liver damage.”

    Pain Medications Mistake No. 4: Drug Interactions

    Before taking any pain pill, think about what other medicines, herbal remedies, and supplements you are taking. Some of these drugs and supplements may interact with pain medications or increase the risk of side effects.

    For example, aspirin can affect the action of some non-insulin diabetes drugs; codeine and oxycodone can interfere with antidepressants.

    You should give your doctor a complete list of all the drugs, herbs, and supplements you take — before getting any prescription.

    If buying over-the-counter medications, Binaso recommends showing a list of everything else you’re taking to the pharmacist.

    Pain Medications Mistake No. 5: Drugged Driving

    Pain medications can make you drowsy. Different people react differently to different drugs.

    “How I react to a pain medication is different from how you react,” Binaso says. “It may not make me drowsy, but may make you drowsy. So I recommend trying it at home first, and see how you feel. Don’t take two pills and go out driving.”

    Pain Medications Mistake No. 6: Sharing Prescription Medicines

    Unfortunately, it’s very common for people to share prescription medications with friends, relatives, and co-workers. Not smart, Haynes and Binaso say — particularly when it comes to pain medications.

    “If a fairly healthy person is taking a medicine because she is in pain, and wants to give some pills to Uncle Joe because he is hurting — well, this is a potential problem,” Haynes says. “Uncle Joe may have a problem that keeps his body from eliminating the drug, or he may have an allergic reaction, or the drug may interact with a medication he is taking, with life-threatening results.”

    Pain Medications Mistake No. 7: Not Talking to the Pharmacist

    It’s not easy to read drug labels, even if you can make out the small print. If you have a question about either a prescription or OTC drug, ask the pharmacist.

    “That’s why I’m in the store,” Binaso says. “You may have to wait a couple of minutes for me to finish what I’m doing. But you’ll get the information you need to take the right medicine the right way. Just say, ‘Tell me about this medicine; what should I be on the lookout for?’”

    Pain Medications Mistake No. 8: Hoarding Dead Drugs

    Joe’s wife is actually to blame for one of his mistakes. She should have disposed of those extra pain pills once she was over her dental pain.

    Why? One reason is that pills stored at home start breaking down soon after their expiration date. That’s especially true of drugs kept in the moist environment of the bathroom medicine cabinet.

    “People say, “That drug is only a year past its expiration date; isn’t it good?” But if you take a pill that’s broken down, it may not work — or you may end up in the emergency room because of reaction to a breakdown product. That is really common,” Binaso says.

    Another reason that it’s dangerous to hoard is that the drugs may tempt someone else into making a very bad choice.

    “Teen drug abuse is really up, especially with pain medications,” Binaso says. “It is not uncommon for kids to go to their parents’ or grandparents’ medicine cabinet and then go to a party and put the drugs in a bowl.”

    Pain Medications Mistake No. 9: Breaking Unbreakable Pills

    Pills are actually little drug-delivery machines. They don’t work the way they’re supposed to when taken apart the wrong way.

    Scored pills should be cut only across the line, Binaso says. Those without scoring should not be cut at all, unless you’re specifically instructed to do so.

    “When you start chopping up pills like that, the pill may not work,” she says. “We find more and more people are doing this. And then they say, “Oh, that pill had a really bad taste. That is because they cut away the coating.”

    Source: http://www.webmd.com

    Posted via email from Kelli’s Posterous

    How to Give a Killer Massage

    Posted by Kelli on October 12th, 2009


    20 massage techniques to help relieve back pain and stress, for your special someone.
    By Katy Dreyfus

    http://www.lhj.com/health/stress/relaxation-techniques/how-to-give-a-killer-massage/

    Share this with someone special, so you can GET the killer massage.. *g*

    Posted via email from Kelli’s Posterous

    30 Things You May Not Know (Invisible Illness)

    Posted by Kelli on September 14th, 2009


    Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here it goes:

    30 Things About My Invisible Illness You May Not Know (modified)

    1. The illnesses (the big 3 at least) I live with are: Endometriosis, Fibromyalgia, Chronic Fatigue Syndrome
    2. I was diagnosed with it in the year: Endo 1999, Fibro 2006, CFS 2008
    3. But I had symptoms since: Endo – Highschool (late 80’s), Fibro – potentially all my life, but significantly since my riding accident in 2003, CFS – again, potentially all my life, cuz I’ve always been tired
    4. The biggest adjustment I’ve had to make is: Learning limitations
    5. Most people assume: That cuz I am dressed, and moving that I am having a good day & expect me to go do ’stuff’, whatever ’stuff’ may be
    6. The hardest part about mornings are: going to bed. Seriously! my sleep hours are midnight to noon.
    6a. The hardest part about getting up after sleep: is the cramped & stiff muscles from not moving..
    7. My favorite medical TV shows are: Grey’s Anatomy, House, & I loved ER from Day 1.
    8. A gadget I couldn’t live without is: My PC.. it keeps me in touch with people, and lets me research and express myself.. (not quite what I think the question was asking for but there it is)
    9. The hardest part about nights are: slowing down, physically, emotionally, mentally.. night time is my best time, typically my most functional time
    10. Each day I take too many pills & vitamins. 2 in the wee hours, 5 at noon, up to 20 at midnight. and others as needed
    11. Regarding alternative treatments I: am on the fence.. I can’t be bothered with acupuncture, but Osteopathy works awesome!
    12. If I had to choose between an invisible illness or visible I would choose: neither.. I am sick of being tired, & tired of being sick!
    13. Regarding working and career: I would so love to return to work! but I can’t it takes too much a tole out of me
    14. People would be surprised to know: that I once considered modeling as a career choice.. plus-size modeling, but modeling nonetheless.
    15. The hardest thing to accept about my new reality has been: the loss of so many people in my life, friends and family.
    16. Something I never thought I could do with my illness that I did was: meet someone who would understand and accept me for me & all the health issues I have
    17. The commercials about my illness: suck. they are all older ladies who come across as complaining
    18. Something I really miss doing since I was diagnosed is: Camping, hiking.. Amusement Parks..
    19. It was really hard to have to give up: Friendships & the socialization that went with it..
    20. A new hobby I have taken up since my diagnosis is: colouring.. I’ve done several pieces of work for family & my medical team.. I have also got several miscellaneous craft projects on the go..
    21. If I could have one day of feeling normal again I would: bask in the glory! If I didn’t have to pay for it later?? Grab all my friends (past & present) and go camping.. out under the stars, in the fresh clear air, the trees providing shelter & protection.. sitting in front of a campfire, roasting marshmallows and making s’mores.. cooking dinner outside! Chicken, Veg & potatoes straight from the coals! Yum!
    22. My illness has taught me: that I can’t have whatever I want
    23. Want to know a secret? One thing people say that gets under my skin is: that I should be working, not on Gov’t subsidy.. I even lost a friend with that comment. He said “Are you working or are you still milking the system!? Stop using your medical shit for an an excuse to live!” We’d been friends since grade 9, so it still hurts. :`(
    24. But I love it when people: Offer to help.
    25. My favorite motto, scripture, quote that gets me through tough times is: “How am I supposed to recover when I don’t even understand my disease?” ~ Girl Interrupted. White not necessarily all that positive, or in reference to a physical disease (was a mental health patient), it does show the need for more research to even understand what is wrong with Fibromites, or what causes Endo, or what CFS really is..
    26. When someone is diagnosed I’d like to tell them: learn to read your body and pace yourself & do everything to keep otherwise healthy.
    27. Something that has surprised me about living with an illness is: the communities of support that exist are phenomenal!
    28. The nicest thing someone did for me when I wasn’t feeling well was: Opened the door for me. something so simple, but thoughtful. :)
    29. I’m involved with Invisible Illness Week because: I have invisible illnesses and I think everyone should be aware.. awareness bring knowledge.. & that can lead to treatments, even cures, and maybe, just maybe, eradication of some of these conditions so that we don’t suffer invisibly.
    30. The fact that you read this list makes me feel: Special. Thank you. & pls, let me know you were here..

    I Hate My Body Today

    Posted by Kelli on August 21st, 2009


    Have I ever mentioned how much I hate my body?? If not, it’s official. I hate my body & not even from the Fibro this time.

    Between the CFS screwing with my sleep schedule, the IBS helping the CFS out with it’s erratic movements, and then adding my TMJ to the situation keeping me awake cuz the codeine contin doesn’t do shit.. I defiantly do not like my body.. Oddly, it’s X-Str Tylenol that helps my jaw, go figure..

    And this is occurring when my fibro is actually in a temporary remission. Thanks be to God!

    Why can’t this thing in which I am stuck just drop all the health bs for just one day – ALL of it.. *sigh* wow, that would be nice, but likely impossible..

    Am I the only one out here that thinks this way sometimes? Not always, just sometimes?

    Fibromyalgia Pain at Night

    Posted by Kelli on July 21st, 2009

    Fibromyalgia Pain at Night – 10 Tips for Better Sleep
    WebMD Feature By Jeanie Lerche Davis

    Do you toss and turn at night because of fibromyalgia pain or discomfort?

    “People with fibromyalgia tend to have very disturbed sleep,” says Doris Cope, MD, director of Pain Management at the University of Pittsburgh School of Medicine. “Even if they sleep 10 hours a night, they still feel fatigued, don’t feel rested.”

    Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles don’t heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued.

    The result: The body can’t recuperate from the day’s stresses — all of which overwhelms the system, creating a great sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of fibromyalgia.

    Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Smoothing out those sleep problems — and helping people get the deep sleep their bodies need — helps fibromyalgia pain improve significantly, research shows.

    Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally.

    Tips to Get Better Sleep With Fibromyalgia

    Creating a comfort zone at home is key to better sleep, whether you have fibromyalgia or not. It’s all about easing into bedtime feeling relaxed — and staying relaxed so you sleep through the night.

    These 10 tips can help people sleep better:

    * Enjoy a soothing (warm) bath in the evening.
    * Brush your body with a loofah or long-handled brush in the bath.
    * Ease painful tender points with a self-massage device (like a tennis ball).
    * Do yoga and stretching exercises to relax.
    * Listen to calming music.
    * Meditate to tame intrusive thoughts and tension.
    * Sleep in a darkened room. Try an eye mask if necessary.
    * Keep the room as quiet as possible (or use a white-noise machine).
    * Make sure the room temperature is comfortable.
    * Avoid foods that contain caffeine, including teas, colas, and chocolate.

    Therapies to Treat Insomnia When You Have Fibromyalgia

    If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you.

    The therapies help people handle stress better, which helps control fibromyalgia episodes, Cope says. “Fibromyalgia comes and goes,” she tells WebMD. “When you’re stressed out, that’s when it’s worse.” That’s when you’re most likely to have insomnia, too.

    Medications can also help ease fibromyalgia pain at night, or directly treat insomnia. Medications to ease fibromyalgia at night include antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.

    No one therapy will control fibromyalgia pain 100%, Cope adds.

    “Medications help some. Exercise helps some. Stress reduction helps some. Cognitive behavior therapy helps some… If you can get restful sleep, you’re going to function better when you’re awake.”

    Source: WebMD

    Sodium Oxybate Improves FMS Core Symptoms??

    Posted by Kelli on June 15th, 2009

    Data Suggests Sodium Oxybate Significantly Improves Pain and the Core Symptoms of Fibromyalgia

    06/15/2009

    PALO ALTO, Calif., June 15, 2009 — Jazz Pharmaceuticals’ (Nasdaq: JAZZ) sodium oxybate (JZP-6) demonstrated statistically significant and clinically meaningful improvement in pain and the core symptoms associated with fibromyalgia, according to Phase III data presented last week at the 2009 Associated Professional Sleep Societies meeting in Seattle, WA. These data have not been evaluated by the FDA or other regulatory authorities for use of sodium oxybate in the treatment of fibromyalgia.

    Widespread chronic pain is the hallmark of fibromyalgia, but the vast majority of patients are also affected by a broader constellation of symptoms, including fatigue, sleep disturbances, cognitive dysfunction, and impaired physical function.

    “The data showed that sodium oxybate improves the key symptoms of fibromyalgia: pain, fatigue, and sleep disturbances,” said Dr. Todd Swick, one of the study’s investigators and Medical Director of the Houston Sleep Center and Assistant Clinical Professor of Neurology at the University of Texas-Houston School of Medicine. “Millions of people are diagnosed with fibromyalgia and there is a continuing unmet need for therapies that address the constellation of symptoms that can have a significant impact on patients’ quality of life.”

    The 14-week randomized, double-blind, placebo-controlled study included 548 adult patients with fibromyalgia randomized to one of three treatment arms: sodium oxybate 4.5 g/night, sodium oxybate 6 g/night or placebo. The primary outcome measure was the proportion of patients who achieved at least 30% reduction in pain from baseline to endpoint based on the Pain Visual Analog Scale (VAS).

    At three months, 54.2% (p<0.001) of patients treated with sodium oxybate 4.5 g/night and 58.5% (p<0.001) of patients treated with sodium oxybate 6 g/night showed significantly greater reduction in pain as measured by at least a 30% improvement in baseline pain VAS score, compared with 35.2% of patients taking placebo using Last Observation Carried Forward analysis.

    Additional Data Highlights

    – Patients treated with sodium oxybate 4.5 g/night and 6g/night showed significant reductions in fatigue as early as Week 1 after dosing compared with placebo as measured by the Fatigue VAS (p<0.001). These differences were maintained throughout the 14 weeks of the study (p less than or equal to 0.009).

    -- Patients taking sodium oxybate 4.5 g/night and 6g/night showed significant improvement in sleep patterns compared to placebo as measured by the Jenkins Sleep Scale (p<0.001).

    -- Statistically significant improvements in mean scores on the Fibromyalgia Impact Questionnaire, a measure of daily function, and on Patient Global Impression of Change were seen in patients receiving sodium oxybate compared to placebo.

    -- Sodium oxybate was generally well tolerated, with the majority of adverse events reported being mild to moderate in nature. Adverse events were similar to those seen in previous sodium oxybate experience.

    -- In this study, the most common adverse events, with incidence greater than or equal to 5% and at least twice the rate of placebo, were headache, nausea, dizziness, vomiting, diarrhea, anxiety, and sinusitis.

    Additional details on the data presented at the 2009 APSS can be found at http://www.journalsleep.org/PDF/AbstractBook2009.pdf (abstract 0984, p.354).

    Development Plans

    Jazz Pharmaceuticals has completed its second Phase III clinical trial of JZP-6 and expects to announce top-line results from this study around mid-2009. Assuming positive results for the second study, the company anticipates submitting a New Drug Application for sodium oxybate for the treatment of fibromyalgia to the U.S. Food and Drug Administration by the end of 2009. UCB anticipates filing in the EU shortly after. UCB has the exclusive marketing and distribution rights to sodium oxybate for fibromyalgia in Europe and some other countries outside North America and will manage registrations accordingly.

    About Sodium Oxybate

    Sodium oxybate is the sodium salt form of gamma-hydroxybutyrate, an endogenous neurotransmitter and metabolite of GABA. While the precise mechanism of action is unknown, the effects may be mediated in part through interaction with GABA(B) and GHB receptors. Sodium oxybate is the active ingredient in XYREM(R), approved by the FDA for the treatment of excessive daytime sleepiness (EDS) and cataplexy (the sudden loss of muscle tone) in adult patients with narcolepsy. The American Academy of Sleep Medicine recommends sodium oxybate as a standard of care for the U.S. Food and Drug Administration-approved indications. It is also approved by the European Medical Evaluation Agency (EMEA) for the treatment of narcolepsy with cataplexy in adult patients. Most commonly reported adverse drug reactions in narcolepsy patients are dizziness, nausea and headaches. Sodium oxybate has the potential to induce respiratory depression and neuropsychiatric events. Sodium oxybate has not been evaluated by regulators for the treatment of fibromyalgia and is not approved for this use. Additional safety information for Xyrem, including black box warnings, can be found in the full prescribing information at http://www.xyrem.com/prescribing-information.php.

    About Fibromyalgia

    Fibromyalgia, a chronic condition characterized by widespread pain, affects 0.5% – 5% of adults worldwide. Fibromyalgia is believed to be a central nervous system condition, resulting from neurological changes in how the brain perceives and responds to pain. In addition to pain, the main symptoms are fatigue, disturbed sleep and morning stiffness. The exact causes of fibromyalgia are unknown. It may be triggered by physical trauma, emotional stress, chronic pain or infection. Genetics, neurochemicals that affect pain modulation, neurohormones and sleep physiology abnormalities are thought to play a role. Research also has suggested a relationship between sleep and pain. Fibromyalgia patients experience a high prevalence of sleep problems, including a reduction in non-restorative or deep sleep.

    About Jazz Pharmaceuticals, Inc.

    Jazz Pharmaceuticals is a specialty pharmaceutical company that identifies, develops and commercializes innovative treatments for important, underserved markets in neurology and psychiatry. For further information see http://www.JazzPharmaceuticals.com.

    Jazz Pharmaceuticals “Safe Harbor” Statement under the Private Securities Litigation Reform Act of 1995

    This press release contains forward-looking statements related to the development of Jazz Pharmaceuticals’ sodium oxybate (JZP-6) product candidate for the treatment of fibromyalgia, including the timing of results from the second Phase III pivotal clinical trial and the submission of a New Drug Application to the FDA. These forward-looking statements are based on the company’s current expectations and inherently involve significant risks and uncertainties. Jazz Pharmaceuticals’ actual results and the timing of events could differ materially from those anticipated in such forward-looking statements as a result of these risks and uncertainties, which include, without limitation, risks related to the outcomes of the company’s second Phase III clinical study of sodium oxybate for the treatment of fibromyalgia and the timing of the announcement of clinical results, and risks that a New Drug Application may not be submitted, or may be delayed, and that sodium oxybate for the treatment of fibromyalgia may not be approved for marketing by regulatory authorities. These and other risk factors are discussed under “Risk Factors” in the Quarterly Report on Form 10-Q for the quarter ended March 31, 2009 filed by Jazz Pharmaceuticals with the Securities and Exchange Commission on May 7, 2009. Jazz Pharmaceuticals undertakes no duty or obligation to update any forward-looking statements contained in this release as a result of new information, future events or changes in its expectations.

    (C) 2009 Jazz Pharmaceuticals, Inc.
    SOURCE Jazz Pharmaceuticals, Inc.
    Web Site: http://www.jazzpharmaceuticals.com

    Jazz Pharmaceuticals to Present Data From First Phase III Study of Sodium Oxybate in Patients With Fibromyalgia

    06/09/2009

    PALO ALTO, Calif., June 9 — Jazz Pharmaceuticals, Inc. (Nasdaq: JAZZ) announced today that data from the company’s first Phase III clinical trial of sodium oxybate (JZP-6) for the treatment of fibromyalgia will be presented this week during the Associated Professional Sleep Societies (APSS) 2009 Annual Meeting in Seattle, Washington and also during the European League Against Rheumatism (EULAR) Congress in Copenhagen, Denmark.

    Following are the details on each of these data presentations.

    – At APSS on June 10, 2009, Dr. Todd Swick will be presenting a poster entitled “Impaired Sleep and Daytime Functioning at Baseline in Subjects with Fibromyalgia: a 14-week Randomized, Double-blind, Placebo-controlled Trial of Sodium Oxybate” in the 10:15 am-12:15 pm poster session.

    – At APSS on June 11, 2009 at 9:00 am in Ballroom 6E, Dr. Swick will also deliver an oral presentation entitled “Sodium Oxybate Improves Pain, Fatigue, and Sleep in Fibromyalgia: Results from a 14-week Randomized, Double-blind, Placebo-controlled Study.”

    – At EULAR on June 12, 2009, in Room C2 from 5:30-7:00 pm, Dr. I. Jon Russell will be presenting “Sodium Oxybate in the Treatment of Fibromyalgia” at a UCB-sponsored Symposium entitled: “Fibromyalgia: How Much More than Pain?” The symposium will be chaired by Dr. Ernest Choy and also features Dr. Gilles Lavigne and Dr. Michael Spaeth as speakers.

    Jazz Pharmaceuticals has completed a second Phase III pivotal clinical trial of JZP-6 and expects to announce top-line results from that study in mid-2009. Assuming positive results in the second study, the company anticipates submitting a New Drug Application for sodium oxybate for the treatment of fibromyalgia to the U.S. Food and Drug Administration by the end of 2009.

    About Sodium Oxybate

    Sodium oxybate is the sodium salt form of gamma-hydroxybutyrate, an endogenous neurotransmitter and metabolite of GABA. While the precise mechanism of action is unknown, the effects may be mediated in part through interaction with GABA(B) and GHB receptors. Sodium oxybate is the active ingredient in XYREM(R), approved by the FDA for the treatment of excessive daytime sleepiness and cataplexy (the sudden loss of muscle tone) in adult patients with narcolepsy. The American Academy of Sleep Medicine recommends sodium oxybate as a standard of care for the U.S. Food and Drug Administration-approved indications. It is also approved by the European Medical Evaluation Agency for the treatment of narcolepsy with cataplexy in adult patients. Most commonly reported adverse drug reactions in narcolepsy patients are dizziness, nausea and headaches. Sodium oxybate has the potential to induce respiratory depression and neuropsychiatric events. Sodium oxybate has not been evaluated by regulators for the treatment of fibromyalgia and is not approved for this use.

    About Fibromyalgia

    Fibromyalgia, a chronic condition characterized by widespread pain, affects 0.5% – 5% of adults worldwide. Fibromyalgia is believed to be a central nervous system condition, resulting from neurological changes in how the brain perceives and responds to pain. In addition to pain, the main symptoms are fatigue, disturbed sleep and morning stiffness. The exact causes of fibromyalgia are unknown. It may be triggered by physical trauma, emotional stress, chronic pain or infection. Genetics, neurochemicals that affect pain modulation, neurohormones and sleep physiology abnormalities are thought to play a role. Research also has suggested a relationship between sleep and pain. Fibromyalgia patients experience a high prevalence of sleep problems, including a reduction in non-restorative or deep sleep.

    About Jazz Pharmaceuticals, Inc.

    Jazz Pharmaceuticals is a specialty pharmaceutical company that identifies, develops and commercializes innovative treatments for important, underserved markets in neurology and psychiatry. For further information please see http://www.JazzPharmaceuticals.com.

    Jazz Pharmaceuticals “Safe Harbor” Statement under the Private Securities Litigation Reform Act of 1995

    This press release contains forward-looking statements related to the development of Jazz Pharmaceuticals’ sodium oxybate (JZP-6) product candidate for the treatment of fibromyalgia, including the timing of results from the second Phase III pivotal clinical trial and the submission of a New Drug Application to the FDA. These forward-looking statements are based on the company’s current expectations and inherently involve significant risks and uncertainties. Jazz Pharmaceuticals’ actual results and the timing of events could differ materially from those anticipated in such forward-looking statements as a result of these risks and uncertainties, which include, without limitation, risks related to the outcomes of the company’s second Phase III clinical study of sodium oxybate for the treatment of fibromyalgia and the timing of the announcement of clinical results, and risks that a New Drug Application may not be submitted, or may be delayed, and that sodium oxybate for the treatment of fibromyalgia may not be approved for marketing by regulatory authorities. These and other risk factors are discussed under “Risk Factors” in the Quarterly Report on Form 10-Q for the quarter ended March 31, 2009 filed by Jazz Pharmaceuticals with the Securities and Exchange Commission on May 7, 2009. Jazz Pharmaceuticals undertakes no duty or obligation to update any forward-looking statements contained in this release as a result of new information, future events or changes in its expectations.

    (C) 2009 Jazz Pharmaceuticals, Inc.
    SOURCE Jazz Pharmaceuticals, Inc.
    CONTACT: Willie Quinn, Executive Director, Corporate Development of Jazz Pharmaceuticals, Inc.,
    +1-650-496-2800, investorinfo@jazzpharmaceuticals.com
    Web Site: http://www.jazzpharmaceuticals.com