In mid-September, pop singer and songwriter Lady Gaga announced she was postponing the European leg of her world tour until early 2018 due to “severe physical pain.” She explained on Twitter, “I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more.”
Six days later, she disclosed that the pain witnessed by viewers of the new Netflix documentary Gaga: Five Foot Two is from fibromyalgia, a condition associated with widespread chronic pain, fatigue, memory problems and mood changes.
With this big reveal, Gaga and her high-wattage celebrity have shined perhaps the brightest light yet on a widely misunderstood condition, one that even some doctors still dismiss.
By going public about her fibromyalgia, she hopes to “raise awareness & connect people who have it,” she tweeted.
On social media, while many fans voiced their encouragement, some people accused Gaga of making up or exaggerating her pain. But fibromyalgia patients – and experts – know the chronic pain and incapacity people with fibromyalgia experience is all too real.
Our understanding of the condition “has continued to increase dramatically,” says Daniel Clauw, MD. Dr. Clauw, professor of anesthesiology at University of Michigan and director of the Chronic Pain and Fatigue Research Center, is not involved with Lady Gaga’s treatment.
What Is Fibromyalgia?
Fibromyalgia causes ongoing, widespread musculoskeletal pain and other symptoms that can include severe fatigue, sleep problems, memory problems, digestive and bladder disturbances and depression. Expert consensus is that symptoms are due to a central nervous system that “turns up the volume” on pain, and may even simply create it.
“There’s overwhelming evidence that this is primarily a brain-central nervous system problem,” says Dr. Clauw.
He uses an electric guitar analogy: The strings are the sensory nerves in the periphery, or limbs, of the body, and the amplifier is the central nervous system (the spinal cord and brain), which makes the sound louder when the strings are strummed. In people with fibromyalgia, says Dr. Clauw, “The amplifier is set too high.”
This may be due in part to an excess or lack of certain neurotransmitters (brain chemicals) that either encourage or discourage nerve cells to fire.
In addition to pain, other sensory experiences may be amplified – noises may be louder, lights brighter.
How Is It Diagnosed?
There is no lab test to diagnose fibromyalgia. Diagnosis is made based on criteria developed in 2010 by the American College of Rheumatology. While older criteria stipulated a minimum number of specific “tender” points, the newer ones rely on widespread pain index and symptom severity scale scores.
Who Gets It?
An estimated 6 percent of the population has fibromyalgia. Twice as many women as men develop it, which Dr. Clauw says is the same ratio as in almost all chronic pain conditions.
Some experts suspect people who develop fibromyalgia may have genes that make them more susceptible to the condition. It’s thought that a major stressor – physical or mental – or an infection can turn that susceptibility into symptoms.
“It occurs much more commonly in people who have had early life stress, early life trauma, and we will very often see individuals who’ve had a variety of different stressors that together trigger the development of fibromyalgia.”
How Bad Are the Symptoms?
Some people with fibromyalgia experience severe pain. According to Dr. Clauw, studies that have looked at pain in different rheumatic diseases show that “the average pain level and functional disability of a fibromyalgia patient will be greater than in any of the autoimmune diseases like rheumatoid arthritis or lupus in many cases.”
“Because the pain is widespread, it’s often more disabling than pain that’s just in one or two areas of the body,” he notes.
The pain can come and go and move around the body. And often, it’s just the tip of the iceberg. “We know that above and beyond the pain, the fatigue, the sleep problems, the memory problems are just as bothersome to a lot of the patients,” says Dr. Clauw.
How Is Fibromyalgia Treated?
There are several classes of drugs used to treat the condition, but none is a magic bullet. “There’s a lot of drugs that can be helpful in fibromyalgia, but none of them work well in everyone, and none of them work well in more than a third of the patients we give them to,” says Dr. Clauw.
But when they do work, “They can be very helpful. In almost everyone with fibromyalgia we find one or more drugs that help relieve the pain a little or help people sleep better or help with the mood problems or help with any number of other things,” he says.
Finding a medication that works may involve a lot of trial and error. Dr. Clauw’s advice: “Try different classes of drugs, start at really low dose, go up very slowly, and be patient.” He adds, “There are seven or eight different classes of drugs that can be helpful in people with fibromyalgia. People often have to try one or two drugs in each of those classes and see over time which drugs are most helpful.”
(One class of drugs people shouldn’t be using is opioids, according to Dr. Clauw as well as guidelines from the European League Against Rheumatism. The American College of Rheumatology also strongly recommends against opioid medications.)
Treatment shouldn’t rely on drugs alone. “The best management is some combination of drug and nondrug therapies,” says Dr. Clauw.
In fact, exercise – including aerobic exercise, strength training and aquatic exercise – is currently considered one of the most effective treatment approaches. Although it may be hard to exercise when you’re tired and achy, it can bring some relief. Experts recommend “starting low and going slow.”
For people in too much pain to exercise, physical therapy might be a good place to start.
What the Future Holds
Research into the causes of fibromyalgia and better ways to diagnose and treat it are ongoing.
One recent diagnostic advance: In 2016 researchers at University of Colorado discovered a fibromyalgia “brain signature” in the form of neurological patterns revealed during functional MRI (fMRI) scans. These patterns identified fibromyalgia with 93 percent accuracy in one study. The finding could potentially help doctors more definitively diagnose fibromyalgia and provide insight into which treatments to try.
“The set of tools may be helpful to identify patient subtypes, which may be important for adjusting treatment selection on an individualized basis,” says lead author Marina López-Solà, PhD.
New treatments also may be in the foreseeable future. Jarred Younger, PhD, director of the University of Alabama at Birmingham Neuroinflammation, Pain and Fatigue Lab, notes, “There have been several intriguing findings made in the past year. Many of those involve novel diagnostic tools or treatments for fibromyalgia. None of them [has] undergone the rigorous testing in large numbers of patients that is needed for full acceptance. But, if the preliminary results are true, then there will be some exiting new advances coming soon.”
Chronic pain is a tough nut to crack, but progress is being made, and increasing awareness of fibromyalgia – which Lady Gaga is doing by going public with her own struggles with the condition – can only help.
Says Dr. Clauw, “I’m happy that she has come forward as much as she has already and that people are starting to talk about it and write about it, because it will almost certainly help those people who aren’t Lady Gaga who are presenting for medical attention. Every little bit of positive publicity that this is a real disease helps.”
Author: Marianne Wait for the Arthritis Foundation
- About Fibromyalgia
- Fibromyalgia Fixes: Treatments Worth Trying
- Fibromyalgia Flares: Symptoms, Triggers and Treatment
- Fibromyalgia and Nutrition