Physical anguish is often a symptom of acute problems – not so with fibromyalgia, a mysterious condition that begins in the central nervous system.
Think of the time when you were 20 years old. Were you an average person in a physical sense? I mean, were you healthy? Could you move as you want? Did you feel as if you had your whole life in front of you, and your body would never fail?
This is how Sharon Waldrop felt. When he was younger, the Royal Oak native loved to exercise, but he also liked to move, and that often meant long sessions of skating in the sun. It was what made her feel alive.
Then, after enduring a frustrating series of medical mysteries like a new college graduate, Waldrop told him to stop moving. She had finally been diagnosed with fibromyalgia, a little-known disease at the time characterized by a chronic state of generalized pain. If doctors 20 years ago, when Waldrop learned for the first time that he had the disease, even considered fibromyalgia as something real, they would tell patients that the trick to lessen the pain was simply to stay still.
This devastated Waldrop. Her life flashed before her as she imagined what it would be like to try not to strain to handle the pain. She had not imagined herself as something delicate, she knew she was strong. But was she doomed to put her toe around her body for the rest of her life?
The answer turned out to be no. Waldrop, now 44, would continue to establish the Michigan Fibromyalgia Association. As its director, Waldrop has, in many respects, built his career around understanding what afflicts her at its core. As a result, she has seen the “desperation” of fibromyalgia dissipate over the years for her and her sick companions. For example, experts now know that staying still is sometimes the worst thing you can do if you want the pain of fibromyalgia to go away.
But while acceptance of the condition and a clearer picture of the true origin of fibromyalgia has emerged, it often remains a challenge to get people – even in the medical community – to get rid of cynical perceptions of the disease. The stigma is still there, says Waldrop, as it was in the late 19th century when doctors first identified fibromyalgia and described it as a largely “psychological” condition.
Were you really feeling all this pain? Or were they inventing everything?
“We have come a long way in 20 years,” says Waldrop. “But there’s still a lot more we need to learn and a lot more education is needed to make people see that fibromyalgia is real.”
What is pain?
Dr. Daniel Clauw, one of the world’s leading experts in fibromyalgia, agrees with Waldrop’s feelings.
“[Some doctors] still see patients with fibromyalgia as a lot of crock. It’s easy to think of them that way, “says Clauw, a professor of medicine and anesthesiology and director of the Center for Chronic Pain and Fatigue Research at the University of Michigan. After all, there is still no definitive test to diagnose fibromyalgia. But he noted that there is no definitive diagnostic test for Alzheimer’s or amyotrophic lateral sclerosis (ALS).
“That’s great when there is a ‘test’,” says Clauw. “But most medical conditions are not that simplistic.”
Clauw says the pain center at U-M is among an international group of research institutions that receive the most funding for pain research from the National Institutes of Health. In summary, it is helping to direct some of the world’s most sophisticated research on fibromyalgia and chronic pain in southeastern Michigan. What Clauw can say definitively about fibromyalgia today is that it is no longer controversial in the world of pain. He and his colleagues trust that they know what makes patients with fibromyalgia hurt in the long term. And they know that patients with fibromyalgia suffer from real pain.
“We used to think that chronic pain was just acute pain that lasts longer,” says Clauw. “But now we know that the most common types of chronic pain, especially in young people, start in the brain. Your “volume control” to detect pain is too high.
Consequently, Clauw and other experts no longer consider the chronic pain of fibromyalgia as a symptom of what is happening at the “local” level in the body. For example, a patient with fibromyalgia who suffers from painful knees does not experience inflammation or “sharp” pain in the surrounding muscles and joints, but a complex dance of physical dysfunction in the way the central nervous system processes pain. This is one of the reasons
By which the suffix “-itis”, which means “inflammation” and used for a long time to describe painful conditions in different areas of the body, can be so deceptive in the context of chronic pain.
“It is important that fibromyalgia patients understand that just because there is pain in a certain area of the body, it does not mean that there really is something wrong in that area,” says Clauw.
Ironically, “neurologists have been the hardest to convince” of these findings, says Clauw, because they are accustomed to dealing with things like seizures – violent and tangible evidence that something is going horribly wrong in the brain.
What is there in a diagnosis and treatment?
Fibromyalgia is much more subtle than that, at least in appearance, say Waldrop and others. With an estimated 5 million Americans with the condition, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, fibromyalgia affects everyone differently. Pain levels can vary in intensity from person to person, ranging from mild to severe. Although once considered a condition related to arthritis, fibromyalgia, according to the NIAMS, is not a true family member, as it does not affect or cause inflammation in the joints. Its distinctive feature is general body pain and “soft spots” in the soft tissues. And Clauw says that someone with fibromyalgia can “experience absolutely more pain than someone with arthritis.”
All these attributes of fibromyalgia make it difficult to figure out what is wrong, says Clauw. As a result, he estimates that only one in three patients with fibromyalgia today has received the correct diagnosis.
“We know that most people with fibromyalgia will spend an average of five years without receiving adequate help,” says Waldrop. “But the longer it lasts, the more disabled people can become. And it can be difficult to come back from that state. “
Of course, just because you feel unexplained pain does not mean that you have fibromyalgia. A diagnosis often involves ruling out other things. Experts also know that fibromyalgia is almost always accompanied by extreme fatigue, a general lack of energy, and a host of other conditions such as depression, headaches, and cognitive or memory problems.
But what exactly happens in the brain of a patient with fibromyalgia? There are many theories of what can trigger the disease. Some believe that a physically traumatic event, such as a car accident or a difficult illness, can bring it. In the case of Waldrop, he experienced severe endometriosis (a condition that causes pelvic pain) at age 18 and temporomandibular joint (TMJ) disorder in his jaw.
However, no one knows the root cause – in some people it can manifest itself without any reason at all. This is why current research focuses on possible genetic factors that can cause people with fibromyalgia to react more strongly to the stimuli of a typical person.
Clauw says that another theory is that the endogenous opioid system (endorphins that occur naturally in the body) in a victim of fibromyalgia is what is “increasing the volume” in the pain, something that seems counterintuitive since the endorphins are intended to relieve discomfort
This is one of the reasons why Clauw says that most typical pain medications simply do not work for fibromyalgia sufferers, including anti-inflammatories and opioids. “Opioids can make a patient with fibromyalgia feel good for about two months. It’s like a chemical lobotomy that dissociates you from feeling pain, “says Clauw. But it is not a true solution.
For now, the FDA has approved only three medications to treat fibromyalgia: pregabalin, duloxetine and milnacipran. Lyrica is the brand name for pregabalin, and commercials for the drug, which was developed to treat neuropathic pain, have undoubtedly increased awareness of fibromyalgia in recent years. The reactions to these drugs are mixed.
“There is no doubt, we need better medicines to .ctract this,” says Clauw.
Fibromyalgia sufferers must finally find what works for them to lessen the pain and live productively with this chronic condition. Treatment requires a multilayered approach, and may not always include medications.
There’s no cure. As a first step, finding a doctor who understands fibromyalgia is critical, since many medical professionals still do not fully understand the condition. Waldrop also discovered that exercise can help her feel better, which she does on a regular basis, in addition to managing her diet, sleep and stress levels.
“There are so many things I have to do to manage my fibromyalgia, “says Waldrop. “But it is possible to start feeling better.”