Fibromyalgia Patient Survey Shows Diversity in Approach

By Donna Gregory Burch

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Donna Gregory Burch

Opioids are the most helpful treatment for fibromyalgia, according to findings from National Pain Report’s annual fibromyalgia survey. More than 1,400 fibromyalgia patients responded to NPR’s online survey, which kicked off on May 12 in recognition of International ME/CFS and Fibromyalgia Awareness Day.

Of those respondents, nearly 22 percent said opioids improve their symptoms “a lot,” and another 35 percent said opioids help their symptoms “somewhat.”

Medical marijuana was the second most effective treatment, according to survey respondents, with 14 percent saying that it helps them “a lot.”

Numerous research studies support the use of exercise to help manage fibromyalgia symptoms, and many of our respondents find it helpful as well. About 44 percent said exercise was “somewhat” helpful in reducing their symptoms.

Around 42 percent found relaxation practices, such as meditation, yoga, tai chi and others, “somewhat” helpful in relieving symptoms.

Twenty-seven percent said making dietary changes (going gluten free or dairy free, vegetarian, paleo, etc.) was “somewhat” helpful. But another 33 percent said dietary changes had “no effect at all” on their symptoms.

Click image for survey results

We also asked patients if they’d benefited from using any of the three drugs approved by the U.S. Food and Drug Administration to treat fibromyalgia. Unsurprisingly, most patients said they couldn’t take Lyrica (32 percent) or Cymbalta (29 percent) due to side effects.

Out of the three, Lyrica seems to work the best, according to our survey respondents, with more than 22 percent of patients saying it reduces their symptoms “somewhat.” Only 7 percent said it helps them “a lot.”

Seventeen percent of patients said Cymbalta helps them “somewhat” compared to only 6 percent who said it reduces symptoms “a lot.”

Savella isn’t as well-known or well-used as Lyrica or Cymbalta, according to our survey. Almost 74 percent of patients said they’d never tried it. Around 5 percent of patients said Savella had either helped their symptoms “a lot” or “somewhat.”

There’s quite a bit of interest in medical marijuana among our respondents. More than 77 percent said they would try (or have tried) medical marijuana if it was legal in their state.

Our employment question gave us another surprising finding. More than 58 percent of respondents said they’re not able to work due to health reasons. Only 21 percent said they are employed full time. These numbers reflect how debilitating fibromyalgia can be.

We expected some of the answers we received.

Almost all of our respondents (95 percent) were female, and well over half were between the ages of 40 and 60.

While we often hear that fibromyalgia patients are getting diagnosed sooner than in years past, our survey found that most patients are still doing the doctor shuffle. More than 67 percent said they visited three or more doctors before finally being diagnosed.

Despite better education and awareness, patients are still struggling to find competent, understanding physicians. Fifty-six percent said they’d been able to find a doctor “who takes [their] condition seriously and gives appropriate treatment,” while 43 percent said they have not.

Awareness does seem to be growing among family and friends. More than 90 percent of respondents said at least some of their family and friends are supportive of their health challenges.

Do you agree with the survey’s findings? What questions should we ask next year? Tell us in the comments section!

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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