ST. CLOUD, Minn. - Imagine one of the worst pains you've ever felt in your life.
Now imagine someone telling you it's all in your head.
"It was extremely frustrating," says Karen Linnell, who was diagnosed with fibromyalgia after five years of flu-like aches and pains.
The 59-year-old teacher from Sartell says her body reacted to a medication she had taken that "stressed and traumatized" her, which she believes caused her hard-to-diagnose fibromyalgia.
"It's kind of a take a guess, test for this and 'No, you don't have that,' " says Linnell, whose symptoms began more than a decade ago. She was even treated for asthma instead at one point.
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"The pain, until you start treatment, is debilitating. You have it all the time."
Dr. Thomas Kowalkowski is the medical director at Interventional Pain & Physical Medicine Clinic. He is board certified in physical medicine and rehabilitation and as an interventional pain physician.
"Fibromyalgia is a diagnosis of exclusion. There are other things that can cause joint and soft tissue pain that are not fibromyalgia. ... You want to rule out other things such as systemic lupus, rheumatoid arthritis or Lyme disease," he says.
Kowalkowski's rehabilitation center in Sartell features massage therapy, aquatherapy, a sauna or steam room and acupuncture as well as fitness equipment to manage pain.
"Much of what we feel can overwhelm people with the chronic pain that comes with fibromyalgia," says Linnell, who plans to attend a support group for those like her at the clinic.
She says she went to several different clinics before seeing Kowalkowski, which helped a little with her condition, but her symptoms - widespread pain in the muscles, ligaments and tendons - always came back.
"For people who want to try and understand fibromyalgia, I tell them to imagine the worst flu you've ever had with all the aches and pains you get, multiply that by 10, and that's what you feel pretty much every day," says Dr. Jeremiah Bursch, a chiropractor.
Bursch, of the Back to Health Acupuncture and Chiropractic Center in Sauk Rapids, specializes in drug-free and surgery-free methods of helping fibromyalgia sufferers.
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"Depression does play a part in fibromyalgia, and my experience has been that - most of the people that I ask, 'Do you see that as what's causing it?' - most will say, 'No. If you felt like I did every day, you'd be depressed, too,' " he says.
Linnell likes to camp, hike and kayak among other things but said her fibromyalgia kept her from doing those activities until she started taking chronic pain medication, muscle relaxants, antidepressants and sleep aids in combination with physical therapy and diet changes.
"I didn't miss work. I went to work. But by the time I got home, I was in so much pain, I pretty much just went to bed," says Linnell, whose fibromyalgia affected her social and personal life.
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia: widespread pain lasting at least three months and at least 11 positive tender points at specific places on the body.
"Science is finding with fibromyalgia there is a combination of a nervous system problem and endocrine problem, which is a hormone imbalance," Bursch says of why antidepressants are commonly prescribed to treat fibromyalgia.
Fibromyalgia occurs in about 2 percent of the U.S. population, and women are much more likely to develop the disorder than men, with the risk of fibromyalgia increasing with age, he says.
"For a long time, in the medical world, almost 50 percent or more of the medical providers say that it's not even a real thing, so when half of the medical world thinks it's real and half says it's not, I'd say there's some controversy about it," Bursch says.
"But the pain that people have, and the way it destroys their life, is real."
