‘It’s every day waking up not knowing how you’re going to feel’
Fibromyalgia is a long-lasting disorder that “causes pain and tenderness throughout the body,” according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. But while its effects can have severe impacts on those with the disease, some people don’t view it as an actual medical condition — because it cannot currently be diagnosed through medical testing. People are often diagnosed with fibromyalgia because it’s the only explanation left, after doctors have ruled out everything else.
Gaga, whose given name is Stefani Germanotta, expressed her frustration with people who don’t view the condition as a real disease in an interview with Vogue.
“I get so irritated with people who don’t believe fibromyalgia is real,” the singer-actress said. “People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”
She’s not alone: Fibromyalgia affects about 4 million adults in the U.S., or 2% of the country’s adult population, according to the Centers for Disease Control and Prevention.
To get a better understanding of the condition and its effects on people living with it each day, CNBC Make It spoke with Benjamin Natelson, an expert on fibromyalgia and chronic fatigue syndrome and professor of neurology at the Icahn School of Medicine at Mount Sinai in New York.
The CDC defines fibromyalgia as “pain all over the body,” or widespread pain. You might also have fibromyalgia if you’re experiencing tenderness in different parts of your body, when probed, with no medical explanation after several tests, Natelson says.
“For years, primary care doctors were just telling the patient there was nothing wrong with them or it was all in their head,” he says.
There’s currently no test to detect the illness: Fibromyalgia is diagnosed based on what the patient feels and expresses to their doctor, according to the American College of Rheumatology. Lab tests and X-rays can be used to rule out other conditions, the organization adds.
For some people, that raises doubt about whether fibromyalgia is a real condition, or simply a catch-all for unexplained chronic pain symptoms. And as doctors have learned more about the condition, its case definition has repeatedly changed.
Right now, its most commonly observed symptoms overlap with those of chronic fatigue syndrome, says Natelson. Chronic fatigue syndrome is an illness with long-term effects like severe fatigue, trouble sleeping and difficulty with concentration, according to the CDC.
“Whether those two illnesses are the same or different has been a focus of my research for the past decade,” he says. “And there are a lot of bits of data that suggest they’re different, but there are also similarities between the two.”
Fibromyalgia’s main symptom is achiness all over the body that can’t be linked to any other disease through medical testing, Natelson says. Living with the condition can also lead to symptoms like:
- Difficulty sleeping
- Pain that leads to disability
The chronic nature of the illness can also cause “mental and emotional distress,” Natelson adds. For someone who hasn’t experienced discomfort and fatigue at this level prior to developing fibromyalgia, chronic pain subsiding and reappearing can be emotionally draining, he says.
What causes fibromyalgia? It’s a tricky question: The condition’s causes are unclear, Natelson says. The condition does have a couple known risk factors, according to the CDC:
- Most people with the condition are diagnosed when they’re middle-aged or older. However, fibromyalgia can impact anyone regardless of age, including kids.
- You are more likely to develop fibromyalgia if you have lupus or rheumatoid arthritis.
The CDC also notes several more possible links to the development of fibromyalgia, but emphasizes that more research is needed to confirm or understand any connections:
- Sex, as women are twice as likely to develop the condition than men.
- Stressful or traumatic events like car accidents
- Repetitive injuries or injury from repetitive stress on certain joints
- Illness, like viral infections
- Family history
Fibromyalgia can be treated in several ways, according to Natelson and the CDC:
- Medications including prescriptions drugs — the U.S. Food and Drug Administration has approved three drugs for the condition — and over-the-counter pain relievers
- Cardio and muscle-strengthening exercises
- Patient education courses
- Stress management practices like yoga, meditation and massages
- Improved sleep habits for better rest
- Therapy for the condition’s potential mental health impacts
“The best self-help thing that a patient with body-wide pain can do is to walk for 30 minutes every other day,” Natelson says. “Gentle physical conditioning, and I focus on the word ‘gentle’ if the person has really severe fibromyalgia, is best to relieve the discomfort and feel better.”
Just be careful: If you’re experiencing any of these symptoms, don’t self-diagnose or self-medicate. Contact your doctor to test for any possible conditions or health issues — whether fibromyalgia, chronic fatigue syndrome or otherwise.