Fibromyalgia sufferers know what it’s like to live with chronic pain and have their lives turned upside down.
“Fibro sucks,” says Stephanie Bobb, who has lived with the chronic condition for about 14 years. “Unfortunately, this disease comes in all shapes and sizes. I refuse to let it define me.”
When a flare strikes, simple acts, such as her husband putting his arm on her shoulder, make Bobb hurt. When her doctor offered her a whole list of medications, she opted instead for acupuncture and seeing a naturalistic doctor, who helped her to better manage her symptoms.
Up to 12 million North Americans suffer from fibromyalgia, a medical syndrome characterized by chronic widespread pain, allodynia or pain from touching, bumping and other stimulus which is not normally painful, and extremely painful and heightened response to pressure. Research suggests it’s caused by a glitch in the way the body perceives pain.
What is it?
The most common method of diagnosis is a “tender point” exam, and the areas of tenderness need to occur at 11 or more of 18 specified points and widespread pain in all four quadrants of the body for three months. The method is now considered out of date, and more doctors are identifying the condition by using a pain index plus a symptom severity scale, and even genetic testing. The “invisible” illness is often misdiagnosed and has no cure.
People living with fibromyalgia may endure muscle tenderness and spasms, full-body pain, restless sleep, depression/anxiety, trouble focusing or “brain fog,” nerve pain, limb weakness and bowel problems, all of which make it harder to function. Other aspects of the chronic condition are more of a mystery — cause, diagnosis and treatment.
“We are not crazy,” says Teressa Brooks. “What we feel is real.”
What the medical field does know is that the disease affects mostly women, most commonly in ages 30 to 50 at on-start. Some who have the disease also may have suffered from trauma at some time in life. Fibromyalgia may be connected to other conditions such as chronic fatigue syndrome, irritable bowel syndrome, sleep apnea, migraines, rheumatoid arthritis and other such diseases. And although not considered to be a genetic condition, fibro does cluster in families.
“Fibro is something that doesn’t have a face,” Brooks says. “It hides within our bodies, and we battle all kinds of issues, from headaches, muscle pain, leg cramps, brain fog — you name it.”
Living with fibro
Brooks has lived with fibro, as many with the condition call it, since having an ovary removed in 2016.
“That put me in medical menopause, so having unbalanced hormones is what started my nightmare,” Brooks says. “It causes weakness and makes it hard to get out of bed sometimes. I tire easy. I never know when the next flare will be. I have lost jobs, friends and family. My kids don’t understand why I don’t want to do anything. It’s because I hurt and I’m exhausted.”
Brooks recently started a fibromyalgia support group in Stayton to help others like herself talk about the condition that so many people — and medical professionals — have a hard time believing is real.
“It’s just very challenging to live in pain,” says Marci Cooper of Salem. “I have become a master at pushing through the pain, although certain situations still get the best of me and force me to lie down for a while. Probably the most challenging issue of all is accepting the fact that 12 years later, I’m still dealing with it.”
For most, cold or humid weather, too much or too little sleep, poor sleep, doing daily chores, stress and other triggers cause pain levels to rise. Other diseases often crop up, complicating daily life even further.
Although women between 25 and 60 are affected most often, those outside the age range and men, who often go undiagnosed, also fall victim to the disease.
Shawna Schaeffer was only 36 when diagnosed. Now two years later, she says, “I am starting to face the reality that there is no cure for what I have and what I will face later compiled with the pains I have now, I’m just not sure how I can live in that state. It’s especially hard at 38 because I know I have many, many more years of this.”
Is there treatment?
Schaeffer is one of the fortunate to have a supportive family member. Her husband gives her “wonderful, light massage to make my pain feel better.” She also soaks in a hot tub to ease the pain.
“I tried CBD and didn’t have much luck,” she says. “My husband has been making sure I take calcium, iron and glucosamine daily along with my new medication, gabapenten. I just want to live a pain-free life. I want to know what that’s like again.”
To help with her fibromyalgia, Marci Cooper of Salem says she has tried “everything under the sun.”
“I was part of the fibromyalgia program at OHSU, and they couldn’t find a way to help me,” she says. “After years of massage, counseling, physical therapy, occupational therapy, acupuncture, warm water exercise, and on and on, what has ended up working the best for me is an assortment of medications and the art of distractions.
“I try to fill my free time with things I enjoy — grandchildren, chorus, photography, learning to paint,” she adds. “I do see a pain specialist, rheumatologist, spine specialist, cardiologist and my general practitioner. It takes a village to manage fibromyalgia.”
Salem resident Jane Taliaferro was diagnosed with fibro 15 years ago, but recalls having symptoms when she was a child. She says what helps the most is taking magnesium malate, gentle exercise such as walking and stretching, hot baths with Epsom salt, regular massage, and “most of all, getting lots of sleep and trying to stay relaxed and calm.”
Brooks uses analgesic, lotions, pain management, support groups and more.
“What I do to ease my pain is rest, pain meds and de-stress,” she says. “It’s a hand toss most of the time. You do anything you can to make it less miserable.
“Fibro doesn’t need to be a life sentence,” she adds. “The most important things about fibro are self-care — learn to relax and don’t push yourself.”