4 Myths About Fibromyalgia
Fibromyalgia has been called an invisible illness—and according to the results of two new surveys, it's a mystery illness, too.
About 6 million Americans suffer from fibromyalgia, which is characterized by chronic, widespread pain and has no clear medical cause. The surveys, sponsored by the American Chronic Pain Association in partnership with Forest Laboratories Inc., polled over 1,200 people with fibromyalgia and 1,000 people without it to compare the reality of fibromyalgia and its perception among the general public.
The results? There's plenty most of us don't know about fibromyalgia—and a few things that might even surprise those who have it.
"We found that 92 percent of people have heard of fibromyalgia, but they have a real misconception about its impact on daily life," says Penney Cowan, founder and CEO of the American Chronic Pain Association. "There are real differences between what people believe and what actually happens."
Here are four of the biggest myths about fibromyalgia that the survey discovered (for the full results, visit theacpa.org):
Myth: Sedentary activities don't hurt.
When asked whether certain everyday activities would be difficult for people with fibromyalgia, people with and without the illness agreed that physical tasks like household chores and exercising weren't easy. But when it came to sit-down activities, there was a discrepancy: "Driving a car" was rated difficult by 61 percent of people with fibromyalgia, but only 41 percent of people without; 75 percent of fibromyalgia patients found "watching a movie" painful, but only 18 percent of the general population imagined it would be difficult.
"Sitting still in one place is difficult because of the muscle pain. That was for me a big problem," says Cowan, who has fibromyalgia. Moving around can help with the pain.
Myth: Fibromyalgia is a middle-aged woman's disease.
Even people with fibromyalgia were likely to identify it with older women, but the condition also affects women in their 20s, as well as young and middle-aged men. "I treat a lot of young ladies and a few young men," says Beth Hodges, MD, a family practice physician in Asheboro, N.C., who specializes in fibromyalgia treatment. "Men are trickier to diagnose because they don't come in [to the doctor's office]. They might think being diagnosed with fibromyalgia takes away from their masculinity."
Myth: People think fibromyalgia patients are "complainers" or "lazy."
People with fibromyalgia were overwhelmingly likely to feel that others view them in a negative light. But in reality, the general public was more likely to rate fibromyalgia patients using positive adjectives like "courageous" and "strong." Because chronic pain and depression often go hand in hand, correcting this misperception could be an important step in treatment.
Myth: It's easy to know when to seek help for pain.
The fibromyalgia patients in the survey reported waiting an average of 3 years to seek help for their symptoms, with 15 percent saying they waited 7 or more years. By contrast, only 3 percent of people without chronic pain said they’d wait a year or more before seeking help. This points to a lack of understanding of how elusive chronic pain symptoms can be.
"I think part of that is because the symptoms don't just hit you all of a sudden, they sort of progress over time," says Cowan. "Everyone experiences it differently. I also think people are afraid, especially men, that they will be seen as being weak. It's a hard thing to diagnose because there's not one thing to put your finger on, no one test that will tell you 'you have fibromyalgia.' "
Chronic pain doesn't have a one-solution-fits-all remedy, and overcoming that hesitation to seek help is the first step in getting the right care for you, says Cowan. "There's a lot that goes into managing fibromyalgia. There are many different choices for treatment—it depends on the person. That's why good, open communication with your health care provider is so important. You've got to be proactive in your care; be that active patient."
Source: Prevention Magazine, Tracy Miller
10 Facts About Fibromyalgia
No, you're not crazy...
Fibromyalgia pain is real—just ask the 6 million Americans who deal with it every day.
But that doesn't mean your doctors or friends will always believe you. In fact, it can take several years and half a dozen doctors to get a diagnosis. Fibromyalgia is a ghost of an ailment; it can cause life-altering pain, but it remains invisible to conventional tests. The condition affects millions of Americans, predominantly women (about 3.4% of women have it, compared with 0.5% of men). Thankfully, as awareness of the condition grows, new research offers hope in treating fibromyalgia symptoms and getting pain relief. Read on to learn how to heal.
1. Pain is your number one symptom
Aches can vary wildly from person to person, but fibromyalgia paintypically takes the form of intense burning or aching sensations in various muscles throughout your body, often with stiffness. The chronicpain can be intense, may be daily, and can last for months. Another telltale fibromyalgia symptom is extreme fatigue, which may be partly due to the fact that the pain—not surprisingly—gets in the way of restful sleep. "If you feel this kind of pain and fatigue for 6 months or more and don't know the cause, suspect fibromyalgia," says Don Goldenberg, MD, director of the Arthritis-Fibromyalgia Center at Newton Wellesley Hospital in Newton, MA and a medical advisor for the Arthritis Foundation. Fibro is linked with a laundry list of other symptoms too, some of which affect some people more than others. These include depression, headaches, digestive woes, and pelvic pain.
2. Don't expect an instant diagnosis
Your regular doctor may not be familiar with complicated, puzzling fibromyalgia, so you might need to ask for a referral to a rheumatologist. These doctors are most familiar with new treatments and alternative therapies. Because there's no traditional diagnostic test for fibro, doctors will often rule out other potential problems first, such as autoimmune disorders, arthritis, a thyroid imbalance, or anemia.
So how do you get an official fibromyalgia diagnosis? Doctors check for pain and need to identify it in at least 11 of 18 designated areas, including spots on your neck, across your chest and upper back, elbow joints, knees, and the backs of your hips, according to the Mayo Clinic.
3. There's proof it's not "all in your head"
Though doctors still don't know exactly what causes fibromyalgia, there's more and more understanding of what's happening to trigger the pain, fatigue, and other symptoms. Research suggests that when you have fibro, your central nervous system doesn't process pain signals normally. In one study, researchers applied heat to the hands of a group of fibro patients and a group of healthy subjects. In the fibro group, the blips ofpain from each jolt of heat didn't subside between applications the way they did in the healthy group; instead, the sensations of painaccumulated, making the fibro patients feel worse.
"We're all constantly exposed to stimuli as we go through our day," explains fibromyalgia researcher Roland Staud, MD. The inability to let go of this input may contribute to the constant state of pain in people with fibromyalgia. But what causes a person's nervous system to become so fixated isn't known.
4. Give natural remedies a chance
Classic medications for fibromyalgia include pain-relieving meds, such as acetaminophen and anti-inflammatories; antidepressants, which may help promote sleep and combat fatigue; and anti-seizure meds that may help relieve pain as well. You and your doctor can experiment with the right mix for your symptoms. However, natural remedies, like exercise and meditation may relieve symptoms far better than drugs, saysPrevention advisor Pamela Peeke, MD, MPH, clinical assistant professor of medicine at the University of Maryland.
Other common alternative remedies for fibromyalgia pain management include acupuncture, massage, biofeedback, and cognitive therapy. Give any treatment at least 3 to 4 weeks before deciding whether it's helpful, because fibro affects people differently: What works for a friend may make your symptoms worse, so keep trying new treatments until you find the program that works for you.
5. Check your vitamin D intake
The evidence has been mounting for years that too-low levels of vitamin D may play a role in fibro pain. Scientists have long known that vitamin Ddeficiency causes bone and muscle pain, and more than half of us don't get enough of this super vitamin. One 2008 study from the Mayo Clinic found that chronic pain patients with inadequate vitamin D levels required medication dosages that were twice as large as those who got enough D; they also felt worse.
While no one's saying that supplementing with vitamin D is a cure, it may relieve fibromyalgia symptoms or reduce your reliance on meds. You'll likely need more than the 400 IU currently recommended for most adults—as much as 1,000 to 5,000 IU daily, so talk with your doctor.
6. Watch out for tummy troubles
Up to 70% of fibro sufferers also have to deal with irritable bowel symptoms, such as diarrhea or upset stomach. The two conditions may share underlying causes, according to the UNC Center for Functional GI and Motility Disorders; brain studies indicate that patients with both conditions have greater pain responses and increased awareness of pain.
You may need to see a GI specialist to help your stomach symptoms, but you can start keeping a log of the foods that seem to set you off. Big culprits include heavy, rich meals and caffeine (both can cause your intestines to cramp). You may also want to keep gas-triggering foods, such as beans and cruciferous veggies, off your plate.
A doctor can prescribe meds for IBS, but recent research shows that some natural remedies work just as well, says Roberta Lee, MD, vice chair of integrative medicine at New York's Beth Israel Medical Center. For example, the study found that soluble fiber supplements helped about 9% of IBS patients, and peppermint oil relieved symptoms in 40% of patients. As a comparison, prescription antispasmodic meds (they help relax your digestive tract) helped 20% of patients.
7. Don't let your sneakers gather dust
When your whole body is throbbing, hitting the gym is understandably the last thing that tempts you. But some of the most encouraging studies show that regular exercise can produce impressive relief from fibromyalgia pain, says Daniel Rooks, PhD, of Beth Israel Deaconess Medical Center in Boston. Start light and progress slowly. "Pick something that feels easy and doesn't leave you tired afterward, like 5 minutes of walking," he says.
It's a tricky balance between knowing your limits—you don't want to overexert yourself—and being overly fearful. "There's no evidence that people with fibromyalgia are more susceptible to injury than people without it," says Rooks. It's okay to exercise through your "normal" painlevels, but if exercise causes the pain to worsen significantly, back off. To ease back into a workout routine, ask a friend to tag along. In Rooks' studies, patients exercised in groups, which he says made the sessions feel fun and social rather than a chore.
8. Or your swimsuit
Taking a dunk in the pool is one of the easiest exercises for fibromyalgia—it works your muscles without putting too much weight on them, and the water itself can be stress-relieving. Check with a YMCA or health club about special therapeutic "aqua-cize" programs held in heated pools, recommends Elizabeth Tindall, MD, a rheumatology specialist in Hillsboro, OR. Water at body temperature (between 90 and 100 degrees F) is best.
9. Find a no-fail stress soother
Stress makes fibromyalgia worse, so consider it doctor's orders to give your body the rest it craves. University of Louisville scientists discovered that fibromyalgia sufferers who underwent group meditation and stress management course work noted less depression, better sleep, and improved coping mechanisms for their residual pain. So cuddle with your pooch, soak in a bubble bath, curl up with a mindless novel—take full advantage of whatever works for you, says Rooks. It's important to go with the flow, listen to your body, and schedule your day appropriately for your level of strength and energy.
10. Don't overdo it on your "good days"
People with fibromyalgia typically have good days and bad ones. Though it's tempting to morph into the Energizer Bunny when you're feeling better, don't. "Trying to push yourself will just cause added stress, and that can exacerbate your pain and fatigue," says Rooks. Cram your good days with too much stuff, and you'll just wind up with more bad days, reports the American Academy of Family Physicians.
One "good day" activity that may be helpful: Cooking and meal prep. "If you have fibromyalgia, you're at great risk of poor nutrition," says Dayton, OH nutritionist Rachel Trevethan, RD. When you feel crappy, eating right becomes less of a priority. So when you're up to it, prepare some meals in advance and keep them in the fridge or freezer, she says. You may not feel like dicing when your pain flares up, but if there are prechopped veggies ready to toss in a salad, you'll be less tempted to order that double-cheese pizza.
Source: Prevention Magazine
5 Food Rules for Fibromyalgia Patients
Fibromyalgia, a chronic disease that causes pain and swelling in more than a dozen points all over the body, affects as many as 5 million people. Because doctors are still unsure of the cause of fibromyalgia, treatment can be frustrating (and often a process of trial and error). “Fibromyalgia symptoms are only about 30% amenable to current pharmaceutical strategies on the market,” says Kathleen Holton, PhD, MPH, lead author of Potential Dietary Links in Central Sensitization in Fibromyalgia.
That’s why many patients are taking matters into their own hands and experimenting with alternative treatments, including dietary changes. Forty-two percent of fibro patients reported that symptoms worsened after eating certain foods, and though much of the research is in its preliminary phases, there’s some evidence that simple diet tweaks may ease fibro pain.
Read on to get 5 food rules for fibromyalgia patients (just be sure to consult your doctor before drastically changing your diet).
1. Load up on vitamin D
Many adults are deficient in vitamin D to begin with, but this sunshine vitamin can be vital to fibro patients. "Vitamin D deficiency can mimic some of the symptoms of fibromyalgia. All patients should be screened for deficiency," says Holton. Studies show that vitamin D deficiencies can cause bone and muscle pain, and upping levels of this hard-to-get vitamin may help. A 2008 study found that pain patients with low levels ofvitamin D required almost double the dose of painkillers as those with adequate levels. Holton recommends taking a supplement, especially during the wintertime.
2. Avoid additives
Common food additives, like monosodium glutamate (MSG) and aspartame, can act as excitotoxin molecules, a chemical group that has the ability to activate neurons that increase sensitivity to pain. Anecdotally, easing off these additives can help, and one very small study of four patients found that eliminating MSG and aspartame resulted in a reduction of fibromyalgia symptoms. The research is far from definitive, but it may be worth trying if you notice your symptoms worsen after Chinese takeout or too many diet drinks.
3. Say yes to fish
Omega-3 fatty acids, found in fatty fish, like salmon, walnuts, and flaxseed, are known to reduce inflammation and help prevent cardiovascular diseases. However, their soreness-reducing traits may also help pain patients. A 2007 study found that after just 3 months of supplementing omega-3 fatty acids, symptoms such as morning stiffness and painful, tender joints decreased. Though this study did not include fibromyalgia patients (it included rheumatoid arthritis (RA), irritable bowel syndrome (IBD), and dysmenorrheal patients), the results show promise. Fibro patients often have co-morbidities such as IBD and RA, so omega-3s may benefit them as well. Try adding salmon or walnuts to your diet, or, if you don’t like those foods, try adding flaxseeds to your cereal or oatmeal.
4. Nix the caffeine
Because sleeplessness is commonly associated with fibro, it may be tempting to fuel up on coffee to get through the day. This, however, may be a mistake. "Some patients use caffeine to compensate for not sleeping well, which can lead to a circular problem where the ‘solution’ of taking caffeine to stay awake is actually causing the problem of not sleeping at night," says Holton. Caffeine can set you up for a crash and, if sipped later in the day, may disrupt sleep schedules. Holton recommends antioxidant-packed decaffeinated green tea as a healthier alternative.
5. Veg out
Some researchers speculate that oxidative stress may be a cause of fibro symptoms. Oxidative stress occurs when the body doesn’t produce enough antioxidants to battle cell-damaging free radicals in the body. Most fruits and veggies are packed with important antioxidants, like vitamins A, C, and E, which fight free radicals to keep your body normalized. Certain studies also show a raw, vegan diet can improve symptoms, but that’s difficult for most people to follow. If you do choose to eat meat, though, opt for a small portion of grass-fed beef. "It is an excellent source of iron and vitamin B12, both nutrients which are extremely important in keeping your pain-processing nervous system healthy," says Holton.
Source: Prevention Magazine