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 pain typically takes the form of intense burning or aching sensations in various muscles throughout your body, often with stiffness. The chronic pain 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 of pain from each jolt of heat didn’t subside between applications the way they did in the healthy group; instead, the sensations of pain accumulated, 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, says Prevention 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 D deficiency 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” pain levels, 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. (Pick one of these easy, freezer-friendly recipes.) 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.