Fibromyalgia: Surviving an invisible misery

Story highlights

  • Fibromyalgia's hallmarks are widespread pain and overwhelming fatigue
  • Fibromyalgia treatment studies are under way around exercise, sleep and behavioral therapy

(CNN)Do you ache all over? Do you find yourself exhausted even after a full night's sleep? Does just the slightest touch on certain spots on your body make you want to scream in pain?

You could have fibromyalgia, a painful musculoskeletal disease characterized by widespread muscle pain, oversensitivity to common pain, extreme fatigue and sleep, mood and memory problems.

What is fibromyalgia?

    Fibromyalgia's name comes from "fibro" (the Latin term for fibrous tissue), "myo" (the Greek word for muscle) and "algia" (the Greek word for pain). According to the National Fibromyalgia Association, an estimated 3% to 6% of the world's population suffers from the condition: about 450 million people, including at least 10 million in the United States.
    Fibromyalgia is considered a rheumatic disease like arthritis because it impairs joints and soft fibrous tissues like muscles, ligaments and tendons. But fibromyalgia is not a true form of arthritis, as it doesn't cause damage to those muscles and joints.
    Instead, the disease wreaks havoc with the body's pain centers, causing muscle stiffness and pain, intense fatigue, difficulty sleeping, migraines and terrible memory and concentration issues, often known as "fibro-fog."

    What's fibromyalgia feel like?

    Those who struggle with fibromyalgia say the muscle and tissue pain can include a deep, achy misery, an unbearable throbbing or stabbing, or an intense burning sensation. Often, the pain occurs in muscle nodules, or myofascial trigger points, causing restricted movement and full-body agony.
    "I used to say it was like a blowtorch," said Lynne Matallana, co-founder of the National Fibromyalgia Association. She began the advocacy group in 1997 after years of suffering from chronic pain.
    "The pain radiates out so much that your skin, your hair, your nails, everything hurts. Anything that touches you hurts you. You can't wear jewelry; you can't wear anything with a collar or rough texture. I used to put pillows at the bottom of my bed so the sheets wouldn't touch my legs."
    Sleep problems triple women's risk of developing fibromyalgia