What’s in A Diagnosis — and Treatment?
Fibromyalgia is far subtler than that, at least in appearance, Waldrop and others say. 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. Though once considered to be an arthritis-related condition, fibromyalgia, according to the NIAMS, is not a true relative since it does not affect or cause inflammation to the joints. Its hallmark is overall body pain and “tender points” in the soft tissues. And Clauw says that someone with fibromyalgia can “absolutely experience more pain than someone with arthritis.”
All of these attributes of fibromyalgia make it hard to figure out what is wrong, Clauw says. As a result, he estimates that only one in three fibromyalgia sufferers today has gotten the correct diagnosis.
“We know that most people with fibromyalgia will go an average of five years without getting the right help,” Waldrop says. “But the longer it goes on, the more disabled you can become. And it can be hard 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 ancillary conditions like depression, headaches, and cognitive or memory problems.
But what, exactly, is happening in the brain of a fibromyalgia patient? There are many theories of what can trigger the disease. Some believe that a physically traumatic event, like a car accident or difficult illness, can bring it on. In Waldrop’s case, she experienced severe endometriosis (a condition that causes pelvic pain) at age 18 and temporomandibular joint disorder (TMJ) in her jaw.
Still, no one knows the root cause — in some people it can manifest for no reason at all. This is why current research is focusing on possible genetic factors that may cause people with fibromyalgia to react more strongly to stimuli than a typical person.
Clauw says another theory is that the endogenous opioid system (endorphins that occur naturally in the body) in a fibromyalgia sufferer is what is “turning up the volume” on pain, something that seems counterintuitive since endorphins are meant to alleviate discomfort.
This is one reason why Clauw says that most typical pain medications simply don’t work for fibromyalgia sufferers, including anti-inflammatories and opioids. “Opioids can make a fibromyalgia sufferer feel good for about two months. It’s like a chemical lobotomy that disassociates you from sensing pain,” Clauw says. But it’s not a true fix.
For now, the FDA has approved only three drugs 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 certainly raised awareness of fibromyalgia in recent years. Reactions to these drugs are mixed.
“No question, we need better drugs to treat this,” Clauw says.
Fibromyalgia sufferers must ultimately find what works for them to lessen the pain and live productively with this chronic condition. Treatment requires a multilayered approach, and it may not always include drugs.
There is 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 figured out that exercising 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 in order to manage my fibromyalgia,” Waldrop says. “But it is possible to start to feel better.”
Written BY MONICA MERCER // ILLUSTRATION BY ANTHONY CARPENTER
Source: This article appears in the April 2017 issue of Hour Detroit