Lady Gaga Has Fibromyalgia. What is It? It’s a Crippling Disease That’s Often Misunderstood
NBCNews.Com/Better September 20, 2017
Lady Gaga's announcement on Twitter that she suffers from fibromyalgia was met with an abundance of well wishes, but more moving were the empathetic responses from others coping with the condition. Not only did fans feel for the "Born This Way" star, they could relate — many gushed with gratitude that Lady Gaga stepped up to raise awareness for a disease that is all too often misunderstood, misdiagnosed or just missed altogether.
"Very often fibromyalgia patients go from doctor to doctor searching for an answer," says Dr. Elizabeth Volkmann, assistant professor of medicine in the division of Rheumatology at UCLA. "Doctors will look for lupus or rheumatoid arthritis (RA) and when they don't find either, they'll stop there."
Fibromyalgia doesn't lend itself to a strict definition or diagnosis. Essentially, “it’s a disorder characterized by widespread muscular pain, often accompanied by other symptoms such as fatigue,” says Volkmann. There's no way of testing for it: blood work won't tell you if you have it, nor will an X-ray or any other kind of black and white medical exam, so diagnosing it is a matter of ruling out other diseases, as well as of "piecing together a constellation of symptoms," says Volkmann.
The primary symptom of fibromyalgia is pain — often quite acute pain — occurring sometimes at the slightest touch.
"Anyone can feel a pinprick to a small extent, but a person with fibromyalgia may feel it amplified," says Volkmann, adding that someone with this condition will also experience pain in very specific areas.
"We look for pain in specific parts of the body: discrete areas, not like soft tissue swelling over a joint. We usually pinpoint muscle areas: 18 points throughout the body," says Volkmann, referring to this graph, which illustrates the accentuated pain points on people with fibromyalgia.
Pain is the main symptom, but doctors also look for profound disorders in sleep, which can lead to chronic fatigue and mood disturbances including depression.
"Brain fog is another common symptom that probably relates to the sleep disorder," notes Volkmann. "Fibromyalgia patients may sleep a couple hours a night or sometimes go days without sleep — and then sleep a lot."
Symptoms can be so disabling that patients may be unable to work. And though the condition isn’t in itself fatal, the reactive depression can be so severe that when untreated, it could lead to suicide, Volkmann says.
Roughly five million people in the U.S have fibromyalgia but the number is probably higher. Dr. Volkmann alone treats hundreds of patients a year.
“I have always been honest about my physical and mental health struggles. Searching for years to get to the bottom of them. It is complicated and difficult to explain, and we are trying to figure it out. As I get stronger and when I feel ready, I will tell my story in more depth, and plan to take this on strongly so I can not only raise awareness, but expand research for others who suffer as I do, so I can help make a difference. I use the word "suffer" not for pity, or attention, and have been disappointed to see people online suggest that I'm being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn't be further from the truth. I'm a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love the most in the world: performing for my fans. I am looking forward to touring again soon, but 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. I love you so much.” - Lady Gaga
There is no definitive cause for fibromyalgia, but it may stem from an “underlying increased sensitivity to pain,” says Volkmann. People who have autoimmune disease such as lupus and RA are also generally more at risk for developing fibromyalgia.
“We also think psychological stress can contribute to it,” says Volkmann. “People can develop it after a major life stressor, trauma or surgery, as well as by stress accumulated over time.”
Dr. Daniel Arkfeld, associate professor of clinical medicine and USC's Keck School of Medicine of USC and the director of rheumatologic education underscores the correlation between poor sleep patterns and fibromyalgia. (One sleep lab study found that 45 percent of people with fibromyalgia had obstructive sleep apnea).
"If there's a train that goes by every hour and [awakens you at night], this could trigger fibromyalgia symptoms," says Arkfeld. "Sleep is very important."
But ultimately, "it's not as simple as the disturbance in sleep. Some people get it and we just don't know why," says Arkfeld, adding that he too treats hundreds of patients with fibromyalgia.
Anyone with fibromyalgia should be in treatment with a rheumatologist, a type of doctor who specializes in autoimmune conditions. Now technically, fibromyalgia isn't classified as an autoimmune disorder (as more research is fielded, this could change), but its symptoms have so much in common with certain autoimmune disorders that a rheumatologist is the best-versed in helping patients manage the condition.
"Because rheumatologists are adept at managing pain, they do a nice job at not masking it with opiates, but getting at underlying causes," says Volkmann, adding that a variety of treatments can be used to help patients — many of them rooted in lifestyle adjustments.
"We work on treating the pain component, but we also work with lifestyle: getting patients on a regular sleep schedule, a regular eating schedule and also coping with stress," says Volkmann. "We recommend meditation and yoga or other light exercise (patients may be limited in what they can do physically). Studies have found that Tai Chi and acupuncture can also help alleviate some of the pain."
A rheumatologist may also prescribe anti-inflammatory drugs (these are essentially stronger versions of Aleve and Ibuprofen), along with Cymbalta, Lyrica and Savella — all brand name drugs targeted at treating symptoms of fibromyalgia —but there’s some controversy around them. Arkfeld doesn’t shun them, but he doesn’t rush to hand them out either, finding that “these drugs maybe work maybe 20 percent of the time and can have a lot of devastating side effects.”
The point Arkfeld emphasizes is that doctors can’t “just throw pills at these people and expect them to get better.” Yes, pills can help (particularly, he finds, those that help with sleep are beneficial), but Arkfeld insists that doctors need to work with patients on a more holistic level and meet with patients on a regular basis (once a month for the first six months at least).
Volkmann adds that while some fibromyalgia patients need strong painkillers like Vicodin, rheumatologists generally look to avoid prescribing opiates.
"More and more we try to avoid opiates because of the risks of addiction and dependency, and because the patient will need more over time to get the same analgesic effect," says Volkmann.
Hormones seem to play a role in fibromyalgia, as women are far more likely to suffer from it.
"Fibromyalgia is much more prevalent in women — with at least a ratio of 5:1 female to male; although prevalence in men is rising and probably under-diagnosed in men,” says Volkmann. “Statistically men don't go to the doctor as much as women."
The fact that women are more prone to fibromyalgia has worked tremendously against learning about the disease. Only in the past few decades has the condition been seen as more than "the hysterical female" disease, Arkfeld notes.
Fibromyalgia may now finally be validated as a real illness, but the hysterical female stigma still weighs on patients looking for answers. A.C Warner, a 28-year-old MFA poetry student with a graduate assistantship was diagnosed with fibromyalgia when she was still in high school, but it took a while to find a doctor who would take her seriously. One doctor assumed she was lying about her symptoms altogether to cover up something she had done. Why the runaround and the dismissive doubt?
THE 'HYSTERICAL FEMALE' STIGMA HAS STYMIED PROGRESS
"Because I was young and female, and female patients' pain is rarely taken as seriously," says Warner, who also has Ehlers-Danlos Syndrome. "And [because] there's no test you can run and get back concrete results, there are still doctors who don't think it's a real thing. I went through all sorts of tests and whatnot for about a year and a half until I was referred to a rheumatologist."
The rheumatologist had Warner perform a series of movements and asked her some questions and “pretty much knew immediately” that she was suffering from fibromyalgia.
Jane Harris, a 45-year-old writer and single mom of three, was diagnosed with fibromyalgia eight years ago — two years into a search for answers.
“I was going to specialists all the time to find the cause/solution of my chronic pain,” says Harris. “At 35, I felt like I had the body of an 80 year-old. I hurt everywhere all the time, and I was exhausted.”
Both Harris and Warner have customized treatments that work for them, but flare-ups can knock them off their feet.
“When I have a flare-up it isn't just my joints that hurt, or the tension headaches or the muscle soreness, it's my skin, too, like every inch of my body is being scrubbed raw with sandpaper,” says Harris. “I work very hard to control my environment to minimize stress and avoid flare-ups.”
Warner, who has to be mindful of the clothes she wears because on her worst days her skin feels bruised all over such that even a clothing tag or a mildly rough seam feels like it's cutting into her, finds that her flare-ups are likely to occur during dramatic shifts in the weather, or after too much physical stress
“Some days I manage better than others,” says Warner. “I'm never 100 percent A-okay. On a very, very rare occasion I feel almost ‘normal’ and I feel like a superhero and like I can do anything.”
Patients can go years not knowing what is wrong with them, and what’s worse, not being taken seriously by doctors. And even when they do receive proper diagnosis, they may struggle with feelings of self-doubt and blame.
Celebrities are (surprise!) human, so we shouldn't be shocked that they suffer from medical conditions just like us; but Lady Gaga's move to cast her own struggles with fibromyalgia into the spotlight feels special because it could help shatter remaining stigmas around the disease.
