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New Hope and Healing for Fibromyalgia

"Hope" and "healing" aren't typically words that spill from the lips of people with fibromyalgia. That's because this condition can be devastating, with such debilitating symptoms as pain at tender points throughout the body, extreme sensitivity to touch, sleep problems, fatigue, and many other problems. The pain is the most problematic, however, often causing sufferers to retreat from work and active engagement in life.

But things are changing, thanks to scientific advances that are helping to untangle reasons why a person with fibromyalgia is so excruciatingly sensitive--a person for whom even a simple pat on the back can lead to a look of shock and tears of pain. A number of doctors who specialize in treating the estimated six million Americans with this once-mysterious disorder assert that renewed hope and the possibility of healing are precisely what patients should feel.

"Don't just get used to the pain!" advises New Jersey rheumatologist Dr. Richard Wilmot, who treats many fibromyalgia patients. "Today, there is actually some good news and increasing hope for treating this condition. We are on to some new leads that might even be able to reverse this disorder."

Chronic pain specialist and WholeHealthMD's Vice President for Medical Affairs, Dr. John Reed, concurs: "There's no reason for anyone with fibromyalgia to be just sitting at home. There are plenty of options out there. And as doctors get better at diagnosing fibromyalgia, we'll be able to target treatments even more effectively."

Condition Validated
Acutely aware that something is seriously wrong but unable to get a clear diagnosis or helpful treatment, fibromyalgia sufferers (the majority of whom are female) often spend years hunting for answers not to mention relief. Unfortunately, many doctors are skeptical about a condition that can't be tested for in a straightforward way. Unable to find an obvious injury or pinched nerve to explain the pain, some physicians even question whether the condition exists at all.

Dr. Wilmot, who specializes in treating fibromyalgia as well as soft tissue pain problems, recalls: "For years, doctors considered this condition unverifiable, and so they'd tell their patients it was probably just depression or something in their heads." Now these individuals can at least take comfort in knowing that what they are experiencing is not just a product of their imaginations.

"The truth is, you have something real," Dr. Wilmot now routinely tells his fibromyalgia patients, "and we can do something about it."

A pivotal study providing objective proof that fibromyalgia is a verifiable condition was published a year ago in Arthritis & Rheumatism. For the study, a team at the National Institutes of Health (NIH) recruited 16 people with fibromyalgia and an equal number of healthy volunteers; brain scans were then done on everyone as pressure was applied to their left thumbs.

The scans clearly showed that the fibromyalgia patients responded much more dramatically to the pressure, with blood racing to areas in the brain involved in pain perception. In contrast, healthy volunteers required twice as much pressure on their thumbs to produce a similar pain response.

Origin of Pain Now Clearer
A May 2003 study, also published in Arthritis & Rheumatism, delivers even more evidence of the exquisite sensitivity to pain experienced by people with fibromyalgia. Investigators subjected 85 people with fibromyalgia and 40 healthy individuals to a battery of tests, from tolerance to varying temperatures to electrical stimuli and sensory tests. The fibromyalgia sufferers were far more sensitive and hyper-reactive to all of them.

Dr. Reed, who has been certified in pain management for more than a decade, says that he has a particular way of describing fibromyalgia pain to his patients: "I tell them they have nerve-ending receptor--think of them as chemical antennas--that have a propensity to alter and respond to pain signals differently than other people's do."

The current findings don't surprise Dr. David Edelberg, chief medical advisor of WholeHealthMD, who has treated hundreds of fibromyalgia patients at his WholeHealth Chicago center. "In fact, those with fibromyalgia are sensitive to more than just pain,” he says. "By and large, my patients are also sensitive to chemicals like perfumes, and even to their prescribed medications. The unfortunate irony," he adds, "is that they are afraid to say anything about these sensitivities, lest they get labeled as chronic complainers."

Studies also reveal that fibromyalgia sufferers have a whopping three times more of a pain-transmitting chemical (called substance P) in their spinal fluid than unafflicted individuals do. And they also possess dramatically less pain-reducing neurochemicals, such as serotonin and norepinephrine. Low serotonin levels make these people more susceptible to depression, while low norepinephrine may contribute to a constant sense of fatigue.

These and other findings point to the fact that the pain of fibromyalgia stems from the central nervous system in most cases, making it a nervous system disorder--and not a rheumatologic one as was long believed. Dr. Wilmot finds this ironic: "The ones who called fibromyalgia a scam diagnosis were often the neurologists. Well, in fact, it's a neurological problem."

Based on the new information, the hope for treating fibromyalgia is now centered on the nerve pathways that communicate pain signals. Scientists hope these pathways can be shifted and altered so as to disrupt the seemingly unbreakable cycle of pain.

Diagnosis Now Faster
In another development, researchers have identified a gene implicated in fibromyalgia, which may help to explain why the syndrome seems to run in families. Along with this genetic predisposition, lifestyle and temperament also seem to influence whether or not fibromyalgia develops.

In light of this and other research, attitudes about fibromyalgia in the medical community are changing. "These days, there's less of a lag before a diagnosis is made," says Dr. Reed. In the not-too-distant past, fully two-thirds of doctors thought fibromyalgia wasn't a genuine condition, he muses, but now that number has dropped, and only about one in three doctors is still a skeptic.

Explains Dr. Wilmot, "Most physicians hear a litany of pain and fatigue, then order a battery of diagnostic tests. When results come back 'normal,' fibromyalgia now gets the nod because everything else has been excluded." And while a simple blood or other lab test for diagnosing the syndrome may still be far off, Wilmot says a thorough physical exam can provide the definitive answer right away. "If fingertip pressure is applied to the tender points specific to this syndrome and severe pain results," he states unequivocally, "there can be no explanation other than fibromyalgia."

New Emphasis on Individualized Treatment
People lucky enough to have been correctly diagnosed are often given general instructions, such as to try sleep medications, painkillers, and self-care measures such as exercise. Now, with the more sophisticated understanding of the complexities of fibromyalgia, there is also a greater appreciation of the need to personalize its treatment and tackle it on multiple fronts.

"Everyone with fibromyalgia is unique," emphasizes Dr. Wilmot. Focus on what works for you, he says, not necessarily on what helped your best friend's sister's second cousin.

Dr. Edelberg adds: "As a doctor, you’re dealing with a spectrum of symptoms that simply can't be addressed in a standard seven-minute office visit. Listening carefully to a patient’s biography, especially what happened the year prior to the development of symptoms, is vitally important. This condition almost always develops after a period of emotional stress, or, less often, after a physical injury like whiplash."

The goal is to find an effective combination of treatments. Locating a doctor with a specialty in pain management--a true art form--is a key place to start. And given that stress so often appears to trigger fibromyalgia, stress-reduction and mind-body therapies may hold some of the answers for you as well--from exercising your body to learning how to meditate or relax or even confront post-trauma fears through a form of psychotherapy called eye movement desensitization and reprocessing (EMDR).

Treatment Particulars
Here are some of the enlightened new approaches in fibromyalgia treatment:

 Pain control. Every physician who specializes in fibromyalgia agrees that first and foremost, pain needs to be dealt with. For years, nonsteroidal anti-inflammatory drugs (NSAIDs) were the mainstay of conventional drug treatment. And they failed miserably. The reason, scientists now know, is because fibromyalgia pain is not primarily due to inflammation; instead it appears to stem from the central nervous system.

In fact, when NSAIDs don't resolve the pain, "It's really a tip-off that the problem is fibromyalgia," notes Dr. Wilmot. "You're wasting your time taking aspirin and Motrin," agrees Dr. Reed. "There are better drugs for central nervous system (neurologic) pain relief than NSAIDs." For instance, many doctors have recently had good results with the analgesic drug tramadol (Ultram), which blocks neurologic pain signals.

 Focus on sleep. It's during sleep that the real work of healing and reworking of the nervous system can begin. Yet sleep is often frustratingly elusive for people with fibromyalgia. Dr. Wilmot notes that fibromyalgia patients almost universally have sleep problems--and it's usually of the "industrial-strength" variety.

Dr. Edelberg concurs. "Once fibromyalgia patients report sleeping through the night, you know genuine improvement is almost at hand," he says. "In fact, medications can sometimes do double duty. For example, cyclobenzaprine (Flexeril) is marketed as a muscle relaxant, but it is also an excellent--and nonaddictive--sleeping pill."

Another medication of interest is the anticonvulsant, gabapentin (Neurontin), which may ease the pins-and-needles sensation (called restless legs syndrome) that keeps many fibromyalgia patients awake at night.

 Attention to exercise. Low-impact aerobics and other gentle exercise improves sleep and can be critical for staying stretched and limber, as well as for preventing muscles from tightening up. Many doctors offer this advice, but without much conviction; few people end up doing the exercises that will help them without injuring themselves. "And that means they ultimately give up," laments Dr. Wilmot. "That's regrettable," he continues, "because my best guess is that with exercise there is some remodeling of the nervous system that consequently keeps the pain system under control."

 Mind-body therapies. "When we really understand fibromyalgia, we'll be going far into the mysteries of mind-body medicine," asserts Dr. Edelberg. Triggers such as emotional and physical stress, he says, clearly play a role in jump-starting and prolonging the illness. "Most fibromyalgia patients are quite savvy about what makes their condition worse," he explains. "It can be anything: the white-knuckle commute to the office, a problematic relationship, taking on too many responsibilities."

Learning to handle these stressors can be difficult, but meditation, yoga, and other mind-body therapies have been found to be very effective. In some cases, psychological counseling alone or in groups can also help dramatically, offering insights into practical ways to tackle everything from elusive sleep to work challenges.

Hope for the Future
Drug companies are fully aware that millions of people are looking for fibromyalgia relief, Dr. Reed explains, and so they are stumbling all over each other to find medications that will ease pain without causing drowsiness. Currently, doctors rely on pain relievers, muscle relaxants, sleeping pills, and tricyclic antidepressants, but on the horizon are drugs that will modify the brain chemicals implicated in pain control.

Also in the works are drugs designed to slow the release of brain chemicals that have been implicated in triggering fibromyalgia pain. A forthcoming second-generation anticonvulsant called Pregablin is one such drug now being studied.

Dr. Wilmot notes that ultimately drugs that actually promote the remodeling of the nervous system may hold the golden key for truly helping fibromyalgia patients get better. In fact, many doctors currently involved in the treatment of this long-mysterious syndrome now think that "hope" and "healing" should definitely be key words in the patient's lexicon. "It's an exciting time," Dr. Wilmot says, echoing the sentiment expressed by other experts. "Very exciting indeed."

Practical steps you can take
The following action items may give you a jump-start in relieving symptoms:

 Find effective pain relief. Experts say that it's critical that pain be controlled as soon as possible, so that pain patterns do not become embedded, sleep can resume, and ultimately healing can occur. A pain management practitioner can be invaluable.  Deal with sleep issues. Getting a decent night's sleep is absolutely critical to healing. Ask your doctor about taking a muscle relaxant, like cyclobenzaprine (Flexeril) or a sleep-inducing antidepressant such as amitriptyline (Elavil) to promote sleep. The unique antidepressant drug trazodone (Desyrel), which helps balance serotonin levels, is both sedating and gentle.  Seek out an exercise specialist Typically the best multidisciplinary pain centers have exercise specialists on staff, and they can provide detailed advice on which exercises to do--these might include yoga stretches or Pilates strengthening. (See the WholeHealthMD Reference Library entries on personal trainer/exercise specialist.)  Assess where you are. Take a few hours to reflect about how fibromyalgia is affecting you and your life, and then try to recall what the months were like psychologically before you developed painful symptoms. Consider how you're feeling physically today as a message from your body asking you to make some changes. Now, with "hope" and "healing" in mind, take some steps to get yourself back on track again.

Date Posted: 07/01/2003

Date Published: 06/30/2003
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