Wednesday, September 23, 2009

Fibromyalgia - Reporter's File - The Long Search for Fibromyalgia Support - NY Times Health

Glenn Robinson was always physically affectionate with his wife,
Judy. But after she underwent abdominal surgery four years ago,
everything changed.

Long after the incision healed, Judy had pain in her hips, her lower
back, her legs, her muscles, her skin. When Glenn tried to tickle or
squeeze her, she would shy away. Hugs would elicit a grimace. "Don't
touch me; it hurts," she would say, backing off. Glenn reacted the
way any husband would. "I got angry," he said.

The couple's social life ground to a halt. Judy, 48, began begging
off picnics, barbecues and trips to the boat races at Belle Isle Park
in Detroit, where they live.

"We would make plans to get together with friends for dinner," said
Glenn, 50. "Come that day, beautiful weather, she wouldn't want to
leave the house."

There were days when Judy didn't even want to talk on the phone. And
though she soldiered through eight-hour workdays in the shipping and
receiving department of a leather company, she would take breaks to
sit in the bathroom and cry.

The Robinsons became desperate to find out what could possibly be
causing Judy's pain. M.R.I.'s turned up nothing more than a herniated
disc or osteoarthritis. Both can be excruciating, but neither could
account for the pains Judy felt all over her body. Her doctor
prescribed narcotics, but even those didn't help. It hurt to wash her
face. It hurt to raise her arm. It hurt to sleep. It still does.

"If you touch my back, it feels like it's all bruised," she said.
"Lately it's felt like electroshocks."

In March 2009, after four years of suffering, Judy finally found a
new doctor who could name her ailment: fibromyalgia.

If there is a circle of purgatory that Dante forgot, it might be the
one reserved for fibromyalgia sufferers. The problem isn't just
pervasive pain. It's the challenge of having a condition that is not
well understood. It doesn't help that there is no objective medical
test to confirm it — no blood test, no cheek swab, no X-ray — just a
patient's subjective reports. Nor does it help that there is no cure.
Many physicians don't want to be bothered with incurable patients.

If doctors don't sympathize, why would friends? How do you explain to
people that you have no broken bones or burns or even infections, yet
your body hurts all over? You look fine, yet beg off work and social
engagements. Are you a malingerer? Are you just trying to claim
disability? Are you simply crazy? And why don't you get better?

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Alternative Therapies for Fibromyalgia - Consults Blog -

Today The Times Health Guide takes a look at fibromyalgia, a mysterious ailment that afflicts both women and men with a range of symptoms that include pain, fatigue, poor sleep, tingling and memory problems. Diagnosis can take a long time (see Anne Underwood's story, "The Long Search for Fibromyalgia Support"), and there is no cure. Though about a third of patients respond to F.D.A.-approved drugs for the condition, many more seek relief through lifestyle changes and alternative and complementary therapies.

This week Dr. Brent Bauer, director of the complementary and integrative medicine program at the Mayo Clinic in Rochester, Minn., joins the Consults blogs to answer readers questions about fibromyalgia. Dr. Bauer writes:

Fibromyalgia is a vexing condition for both patients and doctors. It's vexing for patients because it can cause symptoms ranging from mild muscle aches to debilitating pain, yet it remains poorly understood and has no known cure. It's vexing for many physicians who are faced with suffering patients but have only a limited armamentarium of treatments to offer.

The good news is that research is growing – revealing many new strategies for dealing with fibromyalgia in a way that helps many patients live with the disease successfully.

One exciting area of research in the past decade has been in the realm of complementary and alternative medicine, or CAM, treatments for fibromyalgia. These range from well recognized therapies like acupuncture and massage to more novel treatments like d-ribose and qi-gong.

As this research grows, it is increasingly possible to identify CAM therapies that have some evidence of efficacy and minimal risk that can be incorporated right along with the more conventional treatment recommendations. This blending of the best of evidence-based alternative medicine with the best of conventional medicine is typically referred to as "integrative medicine" – since it is an integration of both for the benefit of the individual patient.

In fibromyalgia, this might mean taking your prescribed medication while adding in a massage once a week or pursuing a gentle, graded exercise program while you also receive acupuncture treatments. By working with your care team, you may be able to find a new combination of approaches that fit your lifestyle while addressing your unique needs.

Sunday, September 20, 2009

Tinkering With Opioid Pain Pills to Stop Their Abuse -

How can you get a faster high from sustained-release pain pills like OxyContin? Let me count some of the ways.

People have crushed them using bookends, hammers, mortars and pestles, and then snorted the powder, according to doctors who study addiction. They've chewed and swallowed fistfuls of pills. They've minced the pills in blenders, pulverized them in coffee grinders, dissolved them in water and then injected the liquid.

Even for those of us who don't inhale, the misuse and abuse of prescription painkillers called opioids should matter because, putting moral and ethics aside for the moment, it's costing us billions of dollars.

In a 2008 federal survey, an estimated 4.7 million Americans were found to have used prescription pain relievers for nonmedical reasons in the previous month. The abuse of opioids now costs at least $11 billion annually in excess medical care including overdoses by adults and accidental ingestion by children, said Howard G. Birnbaum, a health economist with the Analysis Group in Boston.

Corporate America loves a void, and now some pharmaceutical companies are developing innovative opioids intended to deter tampering and meet the market's need.

Some pills under development are rubberlike and harder to crush. Others contain ingredients that cause unpleasant reactions in the body, like flushing or itching, if the pill is adulterated. Taking a cue from exploding ink packets that can render stolen money unusable, some pills have an outer opioid layer and an inner core that, if tampered with, releases a drug that counters the high of the pain reliever.

Embeda, made by King Pharmaceuticals in Bristol, Tenn., uses the last of these strategies. Scheduled to arrive in drug stores this weekend, Embeda is the first of the new so-called abuse-deterrent opioids to reach the market. But, the Food and Drug Administration has approved Embeda only as a pain reliever, not as an abuse-deterrent drug, an agency spokeswoman said.

In a clinical study of Embeda, a majority of volunteers experienced less euphoria when they took a crushed form of the drug compared to immediate-release morphine. But the company has not yet established the real-world significance of the results.

The hope for abuser-unfriendly pills is that they might eventually decrease abuse. The drawback is that the pills represent (bad pun alert!) a fix for only one part of a very complex problem.

In a sense, the new opioids reflect the ups and downs of broader efforts to overhaul health care: addressing cosmetic aspects of the problem without thoroughly grappling with systemic causes.

While legislators are diligently trying to figure out how to get medical coverage for millions of uninsured people, the insurance gap is just one symptom of an ailing, inefficient medical system inclined toward reactive rather than preventive care.

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Saturday, September 19, 2009

When pain makes you feel old before your time

Having chronic pain can affect every aspect of a person's life, making daily activities a struggle. It may even make people feel older before their time.

A recent study validates those feelings. It found that people often troubled by pain may have the same level of functional limitations as those who suffer no chronic pain but are two to three decades older.

Researchers looked at data from 18,531 people ages 50 and older who took part in the 2004 Health and Retirement Study. Subjects were asked whether they were often troubled by pain and if the pain was mild, moderate or severe. Those in the moderate or severe category were categorized as having significant pain. The participants were also quizzed about their physical limitations in terms of mobility, stair climbing, upper-body tasks and daily living activities such as bathing, dressing and eating.

Almost one-fourth of all study subjects said they were often bothered by significant pain. They were also, on average, as limited functionally as people who were 20 to 30 years older who didn't suffer from substantial pain. About a third of people ages 50 to 59 who were in pain, for example, said they could climb several flights of stairs without difficulty, compared with 39% of people 80 to 89 who weren't in pain. Study participants ages 50 to 59 who had pain also had higher rates of dependence and difficulty with daily tasks than people 80 to 89 who didn't have pain.

"When we think about taking care of patients in pain, the question is not just how do you manage their pain, but how do you help them to function better?" lead author Dr. Kenneth E. Covinksy, a staff physician at the San Francisco Veterans Affairs Medical Center, said in a news release.

The study appears in the September issue of the Journal of the American Geriatrics Society.

Wednesday, September 16, 2009

Cindy McCain and migraines : The New Yorker

     Cindy McCain has endured a number of public tribulations, including miscarriage, stroke, knee replacement, ruptured disks, and an addiction to painkillers. Last year, as her husband, John, campaigned for President, her weight dipped below a hundred pounds. During a rally in West Bloomfield, Michigan, she suffered a handshake injury—a minor sprain, aggravating an old carpal-tunnel problem—sustained, her husband said, when a supporter "very vigorously" pumped her right hand. It was thus surprising to learn recently that Cindy McCain had, all along, been engaged in "a silent struggle," one "that has burdened her through many political campaigns, her charitable work, and her day-to-day life." The bearer of the news was the American Headache Society, and the adversary was migraine. "You know the picture in People magazine with me in the little dress?" McCain recalled. "That was the worst. We were with President Bush—where was it, Arizona? Anyway, I got up, because I had to, and once I got on the airplane I collapsed."

McCain was speaking as the guest of honor at a luncheon given by the A.H.S. in a private room at Le Bernardin. (The next day, in Philadelphia, she would be the keynote speaker at the Fourteenth Congress of the International Headache Society.) She was dressed in spectator pumps and a chartreuse piqué suit. Everything about her seemed lemony—tart yellow bob, pursed lips. Her commentary, aided by a stack of blue index cards—one listed migraine sufferers in history: "THOMAS JEFFERSON, JOAN OF ARC, VIRGINIA WOOLF"—was astringent. She recalled, "The first doctor I went to basically said, 'Well, you're just neurotic, you're just stressed, your husband's a senator. Go home, put your feet up, and have a drink.' " She continued, "What affected me the most was being talked to like I was dumb. That infuriated me." McCain has decided to become an advocate for the disorder, which, in her view, is a disability. "I've missed part of my life. I've missed my children in many ways," she said. "I've made every important event, but there're times I've been throwing up out the car window."

Migraine advocates talk a lot about triggers—stimuli that, for unknown reasons, tend to set off attacks. (They also invariably refer to "migraine" in the singular.) McCain, who experiences changes in her field of vision at the onset of her headaches—"I get the aura, the floaters, the ziggies"—believes that sudden drops in barometric pressure are one of her triggers. She was coming off a ten-day headache: "In Arizona we get these huge, monsoonlike thunderstorms, and, boy, that was all it took." Smells are another concern. Not long ago, on business in Dubai, she opened her luggage to find that a bottle of perfume had shattered during the flight. She said, "All I had to do was unzip the bag, and I had to go straight home."

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Tuesday, September 15, 2009

Scientists find virtual reality helps relieve pain

Teenager Jordan Robinson has faced excruciating pain since a backyard prank went wrong but treatment with virtual reality has given him some relief.

Robinson, 18, and his friends thought it would be fun to shoot flaming arrows at bags full of gasoline in his backyard but it turned out to be a very bad idea, landing him in hospital with severe burns on both of his legs.

"I've broken bones, I have done all sorts of stuff and I have never felt a pain like this," he told Reuters TV.

Robinson is taking morphine, but he also has access to a tool not commonly used in most hospitals -- virtual reality pain reduction.

While nurses manipulate his scarred and tender body through physical therapy, his mind is far away, immersed in a computer-generated world of snow and ice using virtual reality.

Normally he'd be in great pain as his burned legs are made to bend and straighten during therapy but in his virtual world, Robinson is too busy throwing snowballs at penguins and snowmen to notice much pain.

"It helps a lot. I wasn't expecting it to as helpful as it was. I haven't ever done anything like that before but I definitely wasn't expecting it to make as big of a difference as it did," he said.

Robinson has Hunter Hoffman, the director of the Virtual Reality Research Center at the University of Washington to thank for the extra pain relief. Hoffman created "SnowWorld."

"What virtual reality does is give them a place to escape. There is a natural tendency when you are in pain to want to leave the room or to get away from what is causing the pain," said Hoffman who is continually working to refine his techniques.

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CU-Boulder Professor Unraveling Mystery of Treating Chronic Pain

Successfully treating chronic pain with opioids such as morphine -- minus the side effects -- may soon become a reality, bringing relief to millions of people who suffer from debilitating pain, according to Distinguished Professor Linda Watkins of the University of Colorado at Boulder.

Watkins and her colleagues in CU-Boulder's psychology and chemistry and biochemistry departments are working to develop new drugs that enhance the ability of opioid drugs to treat pain, while decreasing their negative side effects such as tolerance, dependence and addiction. They are collaborating with researchers at the University of Adelaide in Australia and the National Institute on Drug Abuse in Bethesda, Md.

Recent work by Watkins, a neuroscientist, and others has shown that glial cells in the central nervous system act as key players in pain enhancement by exciting neurons that transmit pain signals. They also found that glial cells hinder the ability of opioids to suppress pain.

Now they believe they have figured out how morphine affects glial cells and neurons. "We've found that different receptors are involved in how morphine suppresses pain through its actions on neurons versus how morphine activates glial cells," Watkins said. "What this means is that you should be able to separate the suppressive effects of morphine -- its pain-reducing effects through its action on neurons -- from all of its bad effects when it excites glial cells."

A paper on the topic was published online in August in the journal Brain, Behavior and Immunity.

Under normal circumstances glial cells are thought to be like housekeepers, said Watkins. They essentially clean up debris and provide support for neurons.

"What's become evident is that glial cells have a Dr. Jekyll and Mr. Hyde personality," Watkins said. "Under normal circumstances they do all these really good things for the neurons, but when they shift into the Mr. Hyde formation they release a whole host of chemicals that cause problems like neuropathic pain and other chronic pain conditions."

The challenge was to figure out how to let morphine do its work on the neurons, without alerting the glial cells, which are known to suppress morphine's ability to kill pain, she said.

To keep the glial cells quiet, the team used a type of drug called naloxone to turn off what is called a toll-like receptor, which is found only on glial cells and not on neurons. Doing this blocks morphine's effects on glia but not on neurons, resulting in effective pain relief without addiction and other side effects.

The team found a particular receptor, called TLR4, not only is important in driving pain but also detects all clinically relevant classes of opioids.

"So if you block this receptor, this should not only block chronic pain, but also make opioids work much better by suppressing pain, while avoiding the bad actions of glial cell activation," Watkins said.

Millions of Americans suffer from chronic pain, a debilitating condition that makes it extremely painful to do anything from taking a shower to putting on a shirt. Chronic pain is different from pain associated with an injury such as a broken bone, which goes away when the injury heals. Cancer and AIDS patients and others with nerve damage suffer from chronic pain, even though no bodily source of the pain can be identified.

Professors Mark Hutchinson, Stefanie Chan and Stephanie Fong of the University of Adelaide; Kenner Rice of the National Institute on Drug Abuse; and Yingning Zhang, Mitesh Shridhar, John Evans, Madison Buchanan, Tina Zhao, Peter Slivka, Benjamen Coats, Niloofar Rezvani, Julie Wieseler, Travis Hughes, Kyle Landgraf, Simon Phipps, Joseph Falke, Leslie Leinwand, Steven Maier and Hang Yin of CU-Boulder were co-authors on the paper in Brain, Behavior and Immunity.

Wednesday, September 09, 2009

13 Things You Don't Say to Someone with Chronic Pain - A ClusterHead's Life

1. You don't look sick.
2. Maybe if you just got out more.
3. You can learn to live with it.
4. You just have to tough it out.
5. It's all in your head.
6. You're just having a bad day.
7. This will pass.
8. Just get more exercise.
9. It can't be that bad.
10. It must be neat not to work.
11. Just be more positive.
12. It could be worse.
13. There's people worse off than you .

Know Fibro | Learn How to Help Manage Your Fibromyalgia Symptoms

Millions of Americans are living with a disorder called fibromyalgia
that has long been misunderstood and misdiagnosed. It may have taken
months or even years for you to be diagnosed with fibromyalgia. It is
important for you to know you are not alone on this journey.

Know Fibro was developed to provide you with tools, tips, and
comprehensive information to help you manage your fibromyalgia
symptoms. Daniel J. Clauw, M.D., a nationally-recognized physician
and fibromyalgia expert who has been treating people with the
disorder for more than 20 years, and Martha Beck, Ph.D., a person
with fibromyalgia who is determined to live well, contributed to Know

Children need pain relief following surgery

It has taken many years for the medical profession to realize that children feel pain just like adults do. Today hospitals are much more aggressive about treating pediatric pain. But parents may not be getting the message. A study in the new issue of the journal Pediatrics found that a stunning number of children experience significant pain at home following an outpatient tonsillectomy. Parents are not providing enough pain medication to keep their children comfortable.

The study, by a research team at UC Irvine and Children's Hospital of Orange County, involved 261 children ages 2 to 12 who underwent routine tonsillectomy and adenoidectomy. Parents rated their children's pain in the days following surgery and reported on how much medication they gave their children. The study found that, on the first day home, 86% of children had significant pain, yet 24% received either no pain medication or only one dose throughout the entire day. On Day 3, 67% of children experienced significant pain, yet 41% received no dose or only one dose.

Studies show that many children experience serious pain following a tonsillectomy or adenoidectomy, and the pain can last for a week. It's unclear why parents don't provide enough pain medication but possible explanations include parents' fears about the drugs, such as dependence or overdose; the mistaken assumption that young children can feel severe pain; or a belief that pain medication should be used only as a last resort. In reality, pain medication should be given at regular intervals during the post-operative period to prevent surges of severe discomfort, doctors say.

Doctors need to do a better job explaining how to use pain medication, the authors said.

"There is a pressing need for researchers to focus attention on the translation of knowledge to target children's pain management at home," they wrote.

Monday, September 07, 2009

Coming to Know the Limits of Healing -

As I pondered postgraduate choices in medical school, I divided the medical specialties into joyful ones like obstetrics (congratulations, it's a healthy baby girl), grim ones like oncology (better get your affairs in order) and faceless ones like pathology (in which the good or bad news is delivered via an impersonal report).

I recognized I didn't have what it took to be grim. And because I love dealing with people, faceless was out. I landed in pain medicine by chance, and surprisingly, I've found that it fits in the joyful category: there are few better feelings than easing a patient's suffering.

Still, after a demoralizing recent constellation of patients, I was left wondering which is worse: informing people that they are going to die, or that they are likely to spend the rest of their lives in pain.

I've followed one older patient for five years now. He is a lovable gentleman in his 80s with chronic back and leg pain. Over the years, we've been through successive trials of different medications and treatments — some of them quite unconventional. Despite our best efforts, he continues to suffer moderately severe chronic pain.

My patient and his family are habitually early for clinic appointments, always exquisitely polite, forever compliant with my treatment recommendations. That he is never demanding, only grateful, makes it all the harder when my efforts fail.

Then there are the young veterans, frequently in their 20s, freshly back from combat. Chronic pain is often complicated by traumatic brain injury, untreated post-traumatic stress disorder, and sleep and mood disorders.

The challenge here is to find a balance between pain relief and side effects; to ensure that opioid painkillers like Percocet and Vicodin are being used to treat pain, not mood or sleep. I find myself in the unenviable position of limiting access to pain medications if their use will lead to functional decline.

The American Pain Society and the American Academy of Pain Medicine recently published their joint Opioid Treatment Guidelines. They include some sobering facts — for example, that nearly all the highest-quality trials evaluating the value of opioids for chronic noncancer pain were short-term efficacy studies, just 16 weeks or less. In clinical practice, patients are often maintained on opioids for years or decades.

Moreover, the studies generally excluded patients at higher risk for substance abuse or with significant coexisting medical or psychiatric problems; that, too, is unrealistic in clinical practice.

And trials suggest that on average, patients given opioids experience an improvement of only 2 to 3 points on a pain scale of 0 to 10. Side effects and risks abound: chronic constipation, sedation and somnolence, a worsening of mood, opioid-induced hyperalgesia (a paradoxical phenomenon in which pain medications actually increase pain), hypogonadism (impaired endocrine function) and addiction. Recent studies also suggest an adverse effect on immune function.

Still another slap in the face came in an article from The Journal of the American Board of Family Medicine that a colleague helpfully placed on my desk. The title — "Overtreating Chronic Back Pain: Time to Back Off?" — and the introduction said it all: "Innovation has often outpaced clinical science, leaving uncertainty about the efficacy and safety of many common treatments. Complications and even deaths related to pain management are increasing."

The downward spiral, the authors wrote, begins with inappropriate imaging, which may reveal irrelevant and incidental findings that lead to unnecessary treatment. Echoing the new guidelines, the authors called for judicious use of opioids to treat chronic low back pain. And they advocated more careful selection of candidates for spinal injections and spine surgery, pointing out that such interventions can actually make matters worse.

"First do no harm" is the guiding principle we learned in medical school. But one skill that is not taught is an easy way to say, "There is nothing more I can offer you."

I've learned that my specialty, like every other, has its limitations. I've learned not to take those limitations personally: they are not a reflection of my inadequacies, merely the current state of the science. (Mastering this is where science becomes art.)

I've learned, too, that it is important that I come to terms with these therapeutic gaps first, so I am effectively able to convey realistic expectations, not perpetuate medical myth. At last, I've grown more comfortable with two of the hardest words in a doctor's vocabulary: "enough" and "no."

Colin Fernandes, a physician and writer, is director of a pain clinic in Northern California.

Sunday, September 06, 2009

Does Ibuprofen Help or Hurt During Exercise? - Well Blog -

Several years ago, David Nieman set out to study racers at the Western States Endurance Run, a 100-mile test of human stamina held annually in the Sierra Nevada Mountains of California. The race directors had asked Nieman, a well-regarded physiologist and director of the Human Performance Laboratory at the North Carolina Research Campus, to look at the stresses that the race places on the bodies of participants. Nieman and the race authorities had anticipated that the rigorous distance and altitude would affect runners' immune systems and muscles, and they did. But one of Nieman's other findings surprised everyone.

After looking at racers' blood work, he determined that some of the ultramarathoners were supplying their own physiological stress, in tablet form. Those runners who'd popped over-the-counter ibuprofen pills before and during the race displayed significantly more inflammation and other markers of high immune system response afterward than the runners who hadn't taken anti-inflammatories. The ibuprofen users also showed signs of mild kidney impairment and, both before and after the race, of low-level endotoxemia, a condition in which bacteria leak from the colon into the bloodstream.

These findings were "disturbing," Nieman says, especially since "this wasn't a minority of the racers." Seven out of ten of the runners were using ibuprofen before and, in most cases, at regular intervals throughout the race, he says. "There was widespread use and very little understanding of the consequences."

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