If you have been diagnosed with fibromyalgia, you may have had a number of first-hand stereotypes about the condition. One persistent misconception is that mostly middle-aged or older people are affected by fibromyalgia especially older women.
In reality, a wide range of ages and both sexes are affected by fibromyalgia. Although it is more likely to be diagnosed at an older age around 8% of people meet the criteria by age 80, according to the National Fibromyalgia Association this may reflect differences in symptom screening and reporting, rather than just how common the disease is.
Whatever the likelihood of fibromyalgia at a given age, this condition often presents various challenges at different stages of life. It’s both because of social and occupational factors, such as whether you’re in school, working a full-time job, or raising a family, and because older people are more likely to have other aspects of health.
Here are some background information on what to expect from different ages of fibromyalgia, along with personal accounts of living with the condition.
Is fibromyalgia a disease associated with age?
While a fibromyalgia diagnosis becomes more common with age, not all doctors agree that this is based on how common the condition actually is. “We found that this is not an age-related disease,” says Bruce S. Gillis, MD, a Los Angeles research physician and fibromyalgia expert who developed a fibromyalgia diagnostic test. “The very elderly can be affected by young children.”
Younger people are often tested for and diagnosed with other illnesses, says Dr. Gillis, because their symptoms point to fibromyalgia. For example, he says, for biomarkers associated with fibromyalgia, many children diagnosed with ADHD (attention deficit hyperactivity disorder) are testing positive.
But while the onset of fibromyalgia may not be more severe in the elderly, Gillis suggests the symptoms may vary slightly with age. “It is reasonable to assume that older people may have more intense symptoms” of fibromyalgia, he says, as they may experience a total loss of stamina, sleep problems, and other causes of joint and muscle pain.
In addition, Gillis notes that older people “often don’t have the ability to exercise as much as they want, so they end up in a kind of shut-in situation,” which can lead to increased fatigue, depression and anxiety.
Fibromyalgia is diagnosed as a young adult
While it can be difficult at any age to get a correct diagnosis of fibromyalgia, this problem can be a particular challenge for adolescents and young adults.
“I saw about 10 doctors trying to see if something could treat me,” says Kiley Reitano, a 19-year-old resident of Boston who was diagnosed with fibromyalgia five years ago, as a freshman at high school. She blogs at The Spoonie about living with chronic diseases.
Reitano says that the diagnosis of fibromyalgia seemed to her doctors to be something to avoid. “They didn’t want me to feel bound by a disease that would probably not go away,” she recalls. “But at that point I was really just looking for answers and really didn’t care what they were.
Reitano did not find it easy to live with fibromyalgia during high school. “I was struggling with this while people of my age had ordinary interactions,” she says. “You get anxious and depressed thinking you’re not normal, like any high school student, but like 10 times because you’re having a chronic disease.”
Reitano is currently studying psychology as a college graduate, hoping to become an art therapist— a nod to the role that art has played in helping her cope with her condition. Because of her health problems, she takes online classes to minimize the risk of missing class.
Reitano says one upside of taking online classes is that she’s going to graduate sooner. Yet she acknowledges that her illness still socially divides her, something with which she has learned to make peace.
“It’s definitely my norm, and now I know how to handle it,” she says. But sometimes, she says, “just trying to accept the fact that this is my life especially when I was younger and started with it first” has been difficult.
Dealing with Mid-Career Fibromyalgia
Dealing with the diagnosis of fibromyalgia while working a busy full-time job also presents unique challenges, as Julianne Davis a 38-year-old resident of Newbury Park, California, who works in a corporate legal department and was diagnosed with fibromyalgia a little over a year ago learned.
Since the onset of her symptoms and her diagnosis, Davis has found it more difficult to get a refreshing night’s sleep. She’s trying to improve her sleep quality through regular meditation. “You’re going to get the phone out, you’re going to turn off your stuff, and you’re going to get in that quiet place,” she says.
Even when she has a good job, Davis often has to struggle with exhaustion and brain fog. “I have to write it all down” to help her recall her duties, she says and even then, “Sometimes things slip through the cracks.”
Although walking regularly can help with exhaustion, “Some days, I’m walking for 20 minutes, and my back is in agony,” she says. Regularly scheduled chiropractic and massage appointments, several times a week, help reduce pain and discomfort.
Adjusting to these new routines has not always been easy. “I think I was putting too much pressure on myself at the start to be like I was two or three years ago,” says Davis. “I’ve gotten better just by listening to my own skin, but that was a big transition for me, letting go of what I feel I’m supposed to be.”
Fibromyalgia in the Middle Ages and beyond
The onset of fibromyalgia symptoms started during menopause for Robin Dix, a 62-year-old New Hampshire native who had been diagnosed with fibromyalgia eight years ago. She’s writing a column called Through the Fog at Fibromyalgia News Today.
“Initially, my main symptom was tiredness, more than pain,” she says. Yet “Over the years, it’s kind of balanced out” to include both of them.
Another factor in her exhaustion rate, Dix states, is the other diseases she has developed over the years including chronic fatigue, adrenal fatigue, underactive thyroid, irritable bowel syndrome (IBS) and gastroesophageal reflux disease (GERD).
“It’s getting worse for me, so it feels like age has something to do with it,” says Dix. She also experienced increased muscle weakness in her legs, making walking difficult.
“It’s hard to know how interconnected things are,” Dix admits, but notes, “The piece I know is fibro, and nothing else is total body pain. It’s not that bad for me, but it’s always there. It’s kind of like background music. “Brain fog is a challenge for Dix as well. “Initially, the fog of the brain was not as bad. It feels like it’s getting worse now, but part of it might just get older, “she says.
While most doctors say that fibromyalgia is not a progressive disease, Dix says, “Our symptoms change over the years for a lot of people, including myself.” This may, of course, be due to the onset of other age-related health conditions.
The result of all these symptoms, for Dix, is that sometimes you need to stay at home instead of seeing family and friends. “When you have to cancel your plans, it’s very lonely,” she says. “You could be very isolated.”
But, like her younger fibromyalgia peers, Dix has found that the Internet can provide a social outlet and support. “There are a lot of places online where people can connect, and it makes you feel much less alone,” she says. “That’s so important, I think.”
