When it comes to diseases that grab front page headlines, fibromyalgia — a chronic musculoskeletal pain disorder — doesn't typically crack the top 10. We're still struggling to understand precisely how it works, what causes it, and how to treat it properly; it's been around for a long time (the symptoms of frequent invalid Florence Nightingale were fibromyalgia-like in nature), but it's only actually been a clinical disorder in American medicine since the 1970s, and sufferers today still tend to go through years of misdiagnosis before somebody figures out what's wrong with them. This infuriating situation is often exacerbated by the fact that fibromyalgia is an extremely painful condition that doesn't exactly let its sufferers lead regular lives.
Fibromyalgia is not common, but that doesn't mean you'll have to look far to find sufferers; the Center for Disease Control estimates that around 2 percent of the American population, or around 5 million people, have it, though diagnostic problems mean the actual figure may be larger. It's particularly common in women (we don't yet know why), and most commonly shows up between late youth and middle age. It's been found to have a strong genetic component, so if chronic pain issues run in your family, it's particularly important to get educated on the symptoms — especially because so many sufferers have problems getting a quick, proper diagnosis.
Many of these symptoms are tied to other health issues, too; however, if you or a friend or family member have all of these symptoms, fibromyalgia may be the cause, and you should make a doctor's appointment ASAP.
Extreme, Lengthy Pain
The species of pain experienced by fibromyalgia sufferers is an exceedingly strange and unique one in the field of human disorders. Rather than corresponding to an actual injury or trauma, it comes from a kind of connection difficulty between the brain and physical areas of the body, which is why it's distinguished from rheumatoid arthritis, which has similar pain levels. "This doesn’t mean the pain is any less real," notes Arthritis Research UK, "but because there’s no physical damage that can be healed there's no easy way to stop the pain." It can also mean fibromyalgia patients go through many hurdles before reaching an effective diagnosis, because doctors searching for a physical "source" for the pain will not find anything conclusive.
Fibromyalgia pain is also distinguished by how indiscriminate it is. Sufferers don't experience pain in one specific area or part of the body; their pain is on both sides of the body, and fairly constant. The National Fibromyalgia & Chronic Pain Association characterizes the pain as "profound, chronic and widespread," with excruciating stabbing feelings, aches, twinges, burning or throbbing. It's recommended that fibromyalgia diagnosis be made if the pain has been around for three months. Interestingly, fibromyalgia is overwhelmingly diagnosed in women, with up to 90 percent of diagnoses occurring for female patients. We're not entirely sure why, but Healthline notes that this has influences on the kind of pain that can define the disorder: women with fibromyalgia can experience crippling menstrual pain, and note that fibromyalgia in general "amplifies" ordinary kinds of pain.
There's also a phenomenon called "tender spots," in which the pain in fibromyalgia sufferers is most intense. Muscles and soft tissue, joints, the back of the neck, hips and other areas form a set of 18 points on the body tested by doctors. 11 of them need to ache when depressed (at least) for a fibromyalgia diagnosis.
A Brain Signature
A new study this week has found that there may be hope for future fibromyalgia sufferers when going through the rigmarole of achieving a diagnosis. (The average time from onset to diagnosis is a whopping 2 to 9 years, which is just appalling and testifies to how little we really know about fibromyalgia as a disease.) The University of Colorado at Boulder has discovered that there's a "neural signature" in the brains of fibromyalgia sufferers that could be used as a shorthand to diagnose it in the future, hopefully cutting that diagnosis time to a much less excruciating period. The study, which compared the MRI scans of 37 fibromyalgia patients and 36 who didn't have it, found that there are three neural "markers" that seem to show up in the brains of fibromyalgia sufferers. It identified the occurrence of fibromyalgia with 93 percent accuracy, a giant step forward.
Fibromyalgia isn't just muscular pain or skeletal pain; it's both. Interestingly, though, muscle pain has been shown to contribute to significant muscle stiffness in fibromyalgia patients, in a way that corresponds a bit to how arthritis works. Fibromyalgia sufferers have the same kinds of patterns of ache: they're stiffest in the morning and evening, with a little relief in the progress of the day, but experience varying levels according to outside factors like activity, sleep level and general fatigue. It's often not excruciating enough to prevent actual movement, but is very inconvenient.
Extreme Tiredness & Brain Fog
Fatigue is an innate part of the experience of fibromyalgia. WebMD points out that fibromyalgia seems, in some cases, to be "triggered" or exacerbated by extremely emotionally tiring events, like death in a family. But beyond acting as a potential cause or tripwire, fatigue is also one of the defining features of everyday life as a fibromyalgia sufferer. Part of this is due to sleep disturbances, which are also extremely common thanks to the persistent level of pain. (According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, doctors seeking to diagnose fibromyalgia need to ask if "waking unrefreshed" is a persistent part of somebody's life, as sleep for people with the condition often has little or no restorative effect.)
A common consequence of this persistent fatigue is what's called "fibro fog," a kind of brain-fog that occurs in the minds of sufferers. An expert at the Arthritis Foundation compares it to "taking cold medication constantly:" a sensation of distance from surrounding events, an inability to focus or make decisions, difficulties with speech and motor control, and persistent memory issues. And this may not actually be down purely to poor sleep — it's unknown whether the brains of fibromyalgia sufferers simply deal with rest periods and restorative sleep in a different, more damaged way, with the possibility that there's a link we still don't know about. Chronic fatigue syndrome shows many of the same neurological symptoms without the necessary level of hideous pain, and it's also a mystery.
Irritable Bowel Syndrome
Wondering how this could be related? There's a strong link between fibromyalgia and irritable bowel syndrome, strong enough that abdominal discomfort and the facets of IBS can actually be in the arsenal of diagnosing fibromyalgia in the first place. There's a large crossover between the two illnesses: up to 60 percent of IBS sufferers also have fibromyalgia, and 70 percent of people with fibromyalgia also have IBS, according to the IBS Center.
The reason, apparently, is that both IBS and fibromyalgia sufferers have a tendency towards conditions involving hypersensitivity. IBS patients are likely to suffer from a condition called "visceral hypersensitivity," in which internal organs are extremely sensitive to stimuli that can cause pain. Fibromyalgia sufferers, meanwhile, seem to have a tendency to "multi sensory hypersensitivity," where scents, touch and visual stimuli spark intense, painful reactions. Both problems are to do with brain wiring, part of a spectrum of sensory processing disorders that are hugely common in people with chronic pain of any kind. If you've been diagnosed with IBS, the likelihood of a crossover diagnosis if you start experiencing painful symptoms is actually pretty high.
So what do you do if you think fibromyalgia might be an option? The Fibro Center points out that fibromyalgia diagnosis can take a long time at present, because doctors usually first try to rule out any physical causes for the persistent pain, and only move onto other options after that. If you have similar symptoms to those listed above and your GP is stumped, suggesting fibromyalgia as an option might be a good idea; the American College of Rheumatology published a guide for diagnosis in 2010 that can be a potential tool to explore.
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