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Powegians Share Stories on Fibromyalgia Awareness Day

Living with fibromyalgia means living with chronic pain. Two residents talk of their experiences in the hope of increasing awareness and empathy.

It's a pain that's constantly moving through your body, says one Powegian who has been diagnosed with the disorder.

And it's certainly real, without any known cure, says another local who has been living with it for three years.

This May 12, for annual "Fibromyalgia Awareness Day," two Powegians are sharing their experiences in the hopes that their stories will shine a brighter light on the syndrome.

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"If I could tell everybody just one thing it's ... even if you don't understand the pain, you can still have empathy for somebody," said Poway resident Mary, who did not want to reveal her last name for privacy reasons. "I'm a person like everybody else."

Fibromyalgia is a syndrome in which patients feel chronic pain "physically, mentally and socially," according to the National Fibromylalgia Association. Heightening awareness of the disorder is important because of the misconceptions of the syndrome, said Palomar Pomerado Hospital Dr. Smitha Reddy, who has studied fibromylalgia since 1990.

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Reddy said because fibromylalgia can't been seen, and those around the patient must believe what the patient says about the pain, skepticism can arise.

"The major misconception is not recognizing the type of pain ... most people will think the patient is malingering because they are seeking more attention," Reddy said.

This truth doesn't fall short for Mary. Mary was first exposed to fibromyalgia in the 90s when her friend was diagnosed with it. Mary said she was skeptical that her friend would have a disorder with pain that spread throughout the body.

"I wish I [had]  believed her," said Mary, who was diagnosed with fibromyalgia in 2007.

Mary said her pain began in 2004 with a "frozen shoulder." Eventually, the pain spread throughout her body to the point where she could no longer work. It took a number of tests and three years before doctors dignosed her with the syndrome.

"The pain was hurting me more than what it should have," she said. "So many things were happening to my body that everything had to be related."

Now, Mary finds comfort in support groups like "Faces of Fibromylalgia," a private group on social media website Facebook where patients share their stories.

"There's a lot of denial," Mary said. "But when you have support, it's easier."

Mary is just one Poway resident with the disorder though.

Katie Martin, who was crowned Miss Poway in 2008, was diagnosed with fibromylalgia after graduating from high school but started feeling chronic pain at 15.

"I grew up as a competitive dancer and was always really healthy, but for some reason when I was a sophomore in high school I started having extreme back pain that eventually spread and encompassed the full body pain associated with fibro," she said. "It took over two and a half years for a diagnosis, and I honestly could not even count how many tests I had to go through."

Martin, who was also crowned Miss La Mesa earlier this year, said she's hoping she can use her role in pageants to raise awareness about the disorder that has changed her life.

"With fibro, honestly, everything is a challenge," she said. "It's been a very big challenge in reconciling the fact that I may look like a healthy 21-year-old, but I have much greater limitations than my friends who I often try to keep up with."

Reddy said she hopes that one day there will be a clinical test that can objectively diagnose the disorder, but until then, the most important thing to do is to be honest about the pain.

"It's important to receive the proper diagnosis for fibromyalgia, so that patients can be treated," she said. "Most patients get frustrated because they do not understand  their symptoms. If they are aware of what's happening to them, they can work with their doctors right away.

"Patients should seek support services, discuss their symptoms with their physicians and be up front with it even there is a doubt they have fibromyalgia."

An estimated 2-4 percent of the population experiences the chronic pain of fibromyalgia, according to the National Fibromyalgia Association. Martin has good advice for those who don't—be thankful.

"I would love for people to really just be appreciative for having relatively good health," Martin said. "It was something I certainly took for granted, and I would give absolutely anything to go a single day without any pain.

"It's a state of being that I haven't felt in close to six years, and I can't even conceptualize it anymore."

Quick Facts:

  • An estimated 10 million Americans have a form of fibromyalgia.
  • Because there is no objective test to diagnose fibromyalgia, physicians must have patients go through tests to rule out other disorders.
  • Symptoms include chronic pain, fatigue, sleep disorder, headaches, migraines and environmental sensitivities.
  • Research shows fibromyalgia may have a genetic component.
  • Different prescriptions are given to patients but therapies such as massages and practicing yoga is helpful for some.

Source: National Fibromylalgia Association. For more info, visit fmaware.org/ 

Dr. Smitha Reddy will teach a class titled, "Fibromyalgia: Coping with Chronic Pain" on at 6 p.m. Thursday, June 9, at the Jean McLaughlin Women's Center at Palomar Pomerado Hospital. For more info, call 858-613-4000.


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