HOUGHTON - Fibromyalgia research has increased greatly in recent years, but the disorder is still hard to diagnose and hard to treat.
According to the National Fibromyalgia Association, within the last decade perspective has shifted from thinking about it as a rheumatologic or autoimmune disorder to now primarily involving the central nervous system. Essentially, the brain, based on what it knows about a person's life, makes a conscious decision to defend the person, and to defend them, it calls upon several body systems, especially nerves, to protect.
"We've learned more in the last 15 years years about the brain and nervous system than we'd ever known in the last 1,000," said Portage Health Physical Therapist Mark Kargela, who works with patients who have been diagnosed with fibromyalgia. "It's more of a nervous system sensitivity issue, a hypersensitivity. It can affect multiple systems."
It's the varied nature of the symptoms - pain all over, fatigue, sleep difficulties, digestive disorders and others - that make it challenging to diagnose. But, advances in neuro-imaging technology have opened the door for quicker recognition of the problem.
"It's not an uncommon diagnosis," said Kargela, a Calumet native with 10 years of physical therapy experience who recently returned to the area from Grand Rapids. "It's more common in females, but it can happen in males."
According to the Fibromyalgia Network, it affects 3-5 percent of the general population, occuring in people of all ages, even children.
Kargela described it as the feeling of being on edge. While trauma and injury can lead to nerve issues, stress and tension can play just as much of a factor.
"The analogy I use with my patients is your nervous system functioning on that bear-chasing-you-through-the-woods mode, where it's tense, working hard and protecting you, as opposed to you just ate Thanksgiving dinner and you feel like you're ready to relax," Kargela said.
Unfortunately, people with fibromyalgia are often accused of making it up or exaggerating the pain or other symptoms, but, according to Kargela, it's a very real problem.
"The pain is absolutely real, but it's a different reason behind why it's there and why it's staying," he said.
For people without fibromyalgia, for example, pain can be more tolerable during exercise, where as intense exercise can flare up the condition for people who do suffer from the disorder.
There are medical solutions that can work, including some anti-depressants that can calm nerves, but because of the multiple manifestations of fibromyalgia, a multi-disciplinary approach can be best in treating it. There is no cure, but there are ways to train the nervous system and limit its effects.
"I always tell folks I'd be lying to you if I said we're going to make you pain-free," Kargela said. "We're going to make you learn how to function within your pain and return you to some of these activities that fibromyalgia is taking away from you."
Physical therapy can work as a starting point to teach certain movements that do help train the nervous system, and a typical fibromyalgia patient will be in for 6-10 PT sessions before being turned over to an independent management strategy.
"The number one thing we do is educate them," said Kargela, who said people in the past may have had bad experiences with therapy because it flared the condition. Now, with more knowledge on the disorder, tailored exercises and movements can improve it.
"The key is learning the right ways to move at the right intensity and learning how to understand your nervous system and what it's telling," he said.
While a multi-disciplinary approach is best, Kargela at the very least encourages an active component, because passive means such as only taking pills and being immobile can create other health problems.
"It's a team effort. You have to deal with stress, anxiety, depression and your body's movement issues, and it's not an overnight change," he said. "Your nervous system changes over time to get this sensitive, and it's not going to change overnight. You have to be patient and persistent, but we know if you apply those concepts, you can change your nervous system."