How does a person get fibromyalgia?
The answer is different for every patient—but one thing is likely the same for all: the pathway leading to Fibromyalgia is rarely a straightforward one. Sometimes it consists of a direct ambush sufficient to initiate all the symptoms in one go. Other times it meanders along various routes strewn with different obstacles, each pushing one closer to the unsuspected destination. It can take a careful examination of the pathway to untangle and identify possible triggers.
So what are the most common triggers?
Is it possible to “just wake up with it?”
Let’s take a look at some everyday Fibromyalgia stories and see what physicians and research have to say about them.
Sandy ran 30-40 miles a week and entered many races. In 2006, she decided to train for Britain’s Flora London Marathon. While out training one day, she turned a corner and collided with a cyclist who knocked her to the ground.
“I wasn’t badly hurt, but my knee was sore and I couldn’t walk too well, let alone run, so I rang my parents to collect me,” she says. “The knee took a while to get better and I was eager to get back to training, but I began to get unexplained pains in my hips and back whenever I tried to run.
“The pains just got worse and worse,” she continues. “Then I started to get really tired even after the slightest effort. I had flu-like symptoms, and the burning pain was immense. I seemed to spend ages in bed sleeping, and yet at night I couldn’t sleep; the slightest noise or light would wake me. Finally, a doctor listened to me and handed me a leaflet on FM. All the symptoms matched.”
The majority of people with fibromyalgia attribute the onset of their symptoms to some kind of physical trauma. “The story is always the same,” explains Mark Pellegrino, MD, who has treated over 20,000 fibromyalgia patients. “Basically, a person is pain-free, then has a trauma, then develops pain that never disappears. Eventually that person is diagnosed with fibromyalgia. The trauma may be of sudden onset—for example, a whiplash injury—or may be a repetitive cumulative-type trauma—for example, from years of typing or lifting.”
But how does the trauma result in fibromyalgia? Not everyone who has an accident develops Fibromyalgia. “The mechanism by which trauma leads to fibromyalgia appears to be peripheral triggers from the trauma that mediate biochemical and neurological changes, first in the peripheral nervous system and then in the central nervous system [spinal cord and brain],” explains Pellegrino. “Once the trauma sets the process in motion, eventually it leads to fully developed fibromyalgia, with pain in areas that were never injured in the first place. The risk of developing Fibromyalgia may be related to genetics.”
There is a range of studies looking directly at whether physical trauma can result in the onset of fibromyalgia, but the conclusions remain controversial.
One study from the UK in 2002 interviewed 136 FM patients about any physical trauma that occurred six months before the onset of their symptoms, and compared the results to 152 patients with different illnesses. Researchers found that 39 percent of Fibromyalgia patients reported significant physical trauma compared with only 24 percent of the other patients, and concluded that physical trauma is significantly associated with the onset of Fibromyalgia. But a study from Israel in 2006 concluded that whiplash injury and road accident trauma were not associated with an increased rate of developing fibromyalgia.
“I have seen hundreds and hundreds of people whose basic story goes like this: ‘I was fine, I got a virus, I developed fatigue and pain, and I’ve never been the same since,’” says Pellegrino. “The mechanism by which an infection leads to fibromyalgia is probably related to inflammatory or autoimmune changes caused by the infection that starts the fibromyalgia cascade. The actual clinical infection resolves and is long gone, yet fibromyalgia symptoms continue.”
Helen was perfectly healthy before she developed a kidney infection. “It was really bad, and it scarred my left kidney,” she explains. “After that, the pain started moving down to my lower back, hips, and legs, where it remained. I had a lot of trouble with my lower back and couldn’t walk very far, so was referred to a rheumatologist who eventually diagnosed FM.”
Various viruses have been linked to causing fibromyalgia — for example, Epstein-Barr virus, Human Herpes Virus 6, and the influenza virus. Many times, though, the off ending virus is unknown.
“I had a very bad virus infection. My throat was so sore I could only just swallow a sip of water,” says Shirley. “After the mysterious virus had gone, I was left with pain all over my body. It was so bad I could barely do anything at all. After many tests, I was eventually told that I had FM and post-viral arthritis.” Fibromyalgia can also be triggered by bacterial, yeast, or parasite infections. In fact, some research studies have found bacteria Mycoplasma incognitus and Chlamydia pneumonia in the blood of patients with fibromyalgia and CFIDS.
Dido believes her fibromyalgia was triggered by a series of emotional issues she went through about three years ago. “My father-in-law passed away very suddenly, which hit me like a speeding train,” she explains, “and on top, of that my business was struggling and I was very worried about how I was going to pay wages every week, let alone deal with the tax man. It all mounted up, and the symptoms of pain and fatigue just took over.”
Severe stress can have the same effect on the body as a physical trauma, only instead of a tissue injury there is a stress injury that can disrupt the hormones that control the response to stress. Research studies carried out by Leslie Crofford, MD, and her team at the University of Michigan, Ann Arbor, and Gunther Neeck, MD, PhD, and his team at the University of Gissen in Germany, have demonstrated stress hormone abnormalities in people with fibromyalgia.
Levels of the hormones that control stress, corticotrophin-releasing hormone and adrenocorticotropic hormone, are too high, whereas levels of cortisol, the hormone that enables the body to respond to stress, are too low. This means that the stress system is very responsive to stressful situations, but at the end of the day doesn’t produce the goods to help you cope with it.
These acute stresses can then cause other changes in the body that perpetuate the fibromyalgia cascade. “Acute, severe stresses can create changes in the hormones, behavior, sleep, and pain responses, which ultimately establish the chronic feedback loop that amplifies pain and perpetuates fibromyalgia,” explains Pellegrino. “Then, once fibromyalgia has developed, it can be exacerbated by additional stress—for example, the death of a loved one or the loss of employment.”
Tracy’s fibromyalgia developed after having her gallbladder removed. “I had the operation on Friday and was told I would be back to normal in three days,” she says. “I was not, and have not been the same since. I was finally diagnosed two years after the operation.”
Linda, on the other hand, started getting pain all over following the traumatic birth of her first child. “I was fine before and during the pregnancy,” she explains, “but then I had to have an emergency C-section. I started having pain and stiffness in my ankles straight after the birth. Then the pain started to affect me all over.”
Surgery and traumatic pregnancies quite often act as triggers. They are a shock to the body, a physical trauma, and act in the same way as a road accident to trigger the fibromyalgia cascade.
“I call surgeries a special form of post-traumatic Fibromyalgia,” explains Pellegrino. “Hysterectomies, especially, can trigger FM due to the combination of the ‘mechanical’ disruption in the low back/ pelvic area and post-surgical hormone changes, i.e. post-surgical menopause.”
For some people, fibromyalgia is triggered by another disease, most commonly a rheumatic or connective tissue disease like lupus, rheumatoid arthritis, or ankylosing spondylitis. In this case, FM is referred to as secondary fibromyalgia, being secondary to the primary disease.
“Over the years I have seen a consistent clinical association between fibromyalgia and rheumatic arthritis, lupus, polymyalgia rheumatica, and other autoimmune diseases,” says Pellegrino. “It is important to remember, though, that fibromyalgia itself does not turn into these conditions.”
At 22, Jayne was diagnosed with ankylosing spondylitis (AS), a painful, progressive rheumatic disease that causes inflammation of the vertebrae and even fusion between the joints and bones in the spine. She regained her life as best she could, but later noticed the pain and disturbed sleep continued despite her AS medication.
“I developed headaches, mild flu symptoms, pain in non-AS places—and kept waking up at night despite being so tired,” she explains. “On some days my muscles would be really stiff … yet I hadn’t done any exercise. I was sent to the pain clinic at my local hospital, where a consultant diagnosed fibromyalgia.”
“Fibromyalgia can develop as a consequence of other diseases if the autoimmune/ inflammatory mechanism sets off the fibromyalgia cascade,” explains Pellegrino. “Fibromyalgia, once it develops, becomes a separate entity and will often have a course independent of the original primary disease. For example, people can have their rheumatoid arthritis in remission, but be in a severe fibromyalgia flare-up that is more disabling to them than the rheumatoid arthritis ever was.”
“I JUST WOKE UP WITH IT”
Some people say they were fine one day, and then developed fibromyalgia the next.
“That is exactly what happened to me,” says Allie. “I was fine one day and then got up in the morning, went to work, and realized I was really achy all over, like I’d done a workout the previous day. “Only I hadn’t.
“It just got worse from there. I went to the doctor with a complete list of my symptoms and she instantly said it was fibromyalgia.”This pathway is the rarest, and physicians tend to be skeptical of it, believing that with a bit of probing into the patient’s history, a trigger can usually be unearthed.“In my view, not many patients simply wake up with FM,” says Ernest Choy, MD, consultant rheumatologist at King’s College London in the United Kingdom. “Often if you look back into their history, you find a condition which may be the link to Fibromyalgia, such as irritable bowel syndrome or migraine.”
Pellegrino is in agreement. “I always search for an unsuspected trigger, or if there were some symptoms beforehand, such as regional pain, intermittent pain, poor sleep, or fatigue, which may have preceded or even predicted the onset of widespread ‘sudden’ Fibromyalgia symptoms.”
The path to FM can lead from many directions and involve various twists and turns. Your story is unique, but you share a common bond with all those who have FM as you strive to get your life back on track and resume the path to your chosen destination
The majority of people with FM attribute the onset of their symptoms to physical trauma.
Kathy Longley is the editor for FMA UK’s section of the UK fibromyalgia magazine, Family. She now works as a freelance health writer and editor, while continuing to help promote Fibromyalgia awareness in the UK.