Fibromyalgia: Surviving an invisible misery.celebrities face fibromyalgia
(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.”
Overwhelming fatigue is another classic symptom. Between the pain and the exhaustion, says Matallana, she often felt despair.
“You feel like you can’t move, you can’t think, and time seems to last forever and ever,” she explained. “You lose sense of the fact that you could be better.”
Fibromyalgia suffers often have sleep issues, such as restless leg syndrome, and struggle with frequent sleep disruptions. The National Sleep Foundation calls the connection a “double-edged sword: the pain makes sleep more difficult and sleep deprivation exacerbates pain.”
Because both pain and exhaustion are invisible, it’s often hard for anyone with fibromyalgia to convince family and friends of the extent of their misery. To make matters worse, it wasn’t long ago that many doctors thought fibromyalgia was psychosomatic. Sad stories of going from doctor to doctor only to be told that the pain and fatigue are “all in your head” are common among patients; as are stories of losing marriages, relatives and friends who could not understand the debilitation that the disease can cause.
“Doctors didn’t accept it; patients didn’t know what was wrong with them,” Matallana said, describing what having fibromyalgia was like a decade or so ago. “Everyone felt so hopeless. I did a lot of suicide prevention counseling in the beginning of my work with the foundation.
“I always believed that if you went to a health care provider, they would have an answer for you. I didn’t realize there are things they just didn’t understand,” she added, explaining that many doctors wanted to help but didn’t know how.
“What I would often hear is, ‘We don’t believe it’s being caused by anything other than stress or whatever. You need to change your lifestyle.’ ” It was like they were saying, “I don’t know what to do to help you, so go do this, so I can take care of a patient I know how to help.”
“So I quit work, I stayed at home, I tried to exercise and reduce stress,” Matallana said, “but we didn’t know enough about how to put those actions into a workable plan that would slowly help me get better.”
What causes fibromyalgia?
Fibro can strike at any time. Symptoms often begin after a traumatic physical event, such as a car accident, surgery, even infection. Flu viruses, herpes simplex, the Epstein-Barr virus and hepatitis B and C may contribute to the onset of fibromyalgia.
Psychological or emotional stress such as abuse, the loss of a parent or going to war can also trigger the disease. A recent study in Finland found that being exposed to family trauma such as alcohol and financial problems, chronic illness and depression or divorce while growing up was associated with a diagnosis of fibromyalgia later in life.
There’s even a link between sleep disorders and fibromyalgia. A study in Norway found that women older than 45 with frequent sleep issues had five times the risk of developing fibromyalgia than sound sleepers.