Whenever someone is struggling to understand or empathize with what it must be like to live with fibromyalgia, I think to myself “you won’t get it until you get it.” In other words, you won’t completely understand what it’s like to live with fibromyalgia unless you’ve actually lived with fibromyalgia. Not that I would wish that upon anyone – but unfortunately – the true scope of the illness and its impact can only truly be understood by experiencing it.
That said – I think it’s still important to educate and inform. While it may be difficult to completely empathize with what it’s like to live with fibromyalgia without actually experiencing it – it is possible to grasp (at least to some degree) the reality of the symptoms and the complexities of the condition.
While awareness of fibromyalgia is slowly spreading through both the medical community and the general public – it is still widely misunderstood or even completely unknown to many. Did you know what fibromyalgia was before you were diagnosed? Chances are you didn’t. Unless someone suffers from fibromyalgia or is close to someone that does – chances are they know little to nothing about the condition.
With that in mind we’ve pulled together some of the best information available about fibromyalgia to help you educate your friends and family – and maybe even give you a better understanding about your condition. Lets take a look at 10 things they probably don’t know about fibromyalgia:
1. What is Fibromyalgia?
Lets start with what fibromyalgia is. According to the National Fibromyalgia & Chronic Pain Association, fibromyalgia is a “common and complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body.” They note that FM affects people “physically, mentally and socially.”
Of course – this definition doesn’t do it justice. Fibromyalgia is a life-changing illness. It affects essentially every aspect of the lives of those afflicted with it. As we’ll cover a little further on, pain is far from the only symptom – though it is one of the most debilitating. In fact – there are a number of symptoms ranging from extreme pain to chronic fatigue (and everything in between – then some).
2. Fibromyalgia affects 10 million Americans
According to the National Fibromyalgia and Chronic Pain Association, fibromyalgia affects 10 million Americans age 18 years or older. Worldwide an estimated 210 million people – or 3% of the entire population – are affected by fibromyalgia.
Check out this graph to get a sense of the number of individuals affected by fibromyalgia vs. other better-known conditions in the United States:
As you can see – fibromyalgia affects more people in the U.S. than some of the more recognizable conditions and diseases. Yet even still – most people know little to nothing about it!
3. Fibromyalgia is more common in women
While anyone can get fibromyalgia – the data suggests that it is more prevalent in women. According to the Centers for Disease Control and Prevention, the female to male ratio for fibromyalgia is 7:1. Some people – including the National Fibromyalgia & Chronic Pain Association – put the number of women closer to 80% or 90%.
4. You are most likely to get it at middle age
Although fibromyalgia can (and does) affect young adults and children – the majority of sufferers are diagnosed during middle age. Risk and prevalence continue to increase with age.
5. There are other risk factors
According to the Mayo Clinic, you may be more likely to develop fibromyalgia if it runs in your family. Knowing your family’s medical history may be helpful in diagnosing your symptoms and identifying potential causes.
If you have a history of rheumatic disease, you may be more likely to develop fibromyalgia. Rheumatic diseases are characterized by swelling, inflammation or pain in the muscles or joints. These painful diseases include lupus, Rheumatoid Arthritis, Osteoarthritis, Sjogren’s syndrome and more.
6. What Causes Fibromyalgia?
Fibromyalgia is a complex condition and the exact cause still isn’t known. With that said – researchers have made promising discoveries and found various factors that could be contributing to the pain. Doctors and researchers have noted that fibromyalgia patients differ in the way their central nervous system processes pain – causing them to have an increase in the levels of pain. They’ve also noticed increased levels of the neurotransmitters in the brain that signal pain. In essence, this results in the “volume” of pain being amplified or turned up.
Other potential factors can include physical injury or trauma, nutritional deficiencies, infections and even emotional trauma.
7. Average Diagnosis Takes 7 Years!
The National Association of Disability Examiners estimates that the average time between treatment and an accurate diagnosis of fibromyalgia is seven years. This won’t be the case for everyone – but due to its complexity fibromyalgia can be difficult to diagnosis. Of course – that doesn’t mean the diagnosis is made up or that it’s a “last ditch” diagnosis.
The current set of criteria for clinical diagnosis severity classification of fibromyalgia was released by the American College of Rheumatology in 2010. The three main factors evaluated are:
Widespread Pain Index (WPI) >7 and a symptom severity scale (SS) >5 or WPI 3-6 and SS>9.
Symptoms have been present at a similar level for at least 3 months.
The patient does not have a disorder that would otherwise explain the pain.
Download the full criteria here
8. The symptoms may be invisible – but they are REAL
If you have fibromyalgia you’ve likely been told “but you don’t look sick.” A common misconception among those without the condition is that because the symptoms aren’t outwardly manifest or visible, they are not real. This is why we sometimes call fibromyalgia an “invisible illness”. While the symptoms may not be obvious and we may not look sick – the illness is very real.
So how can you respond to someone who doesn’t believe you? Chronic pain sufferer and video blogger Jenni Propoky (a.k.a. Chronic Babe) put together this list of 5 Ways to Respond to Someone Who Doesn’t Believe You’re Sick. Watch the video below:
9. Pain isn’t the only symptom
One common misconception about fibromyalgia is that pain is its only symptom. Of course – pain is often the most debilitating symptom of fibromyalgia, but it is far from the only symptom. Like the pain, however, most of the symptoms of fibromyalgia are invisible to the outside observer. This image is a good illustration of the many “invisible” symptoms of fibromyalgia:
Many do not understand that those suffering from fibromyalgia are often dealing with numerous symptoms such as those pictured above. Having just one of these symptoms would ruin your day. Now imagine having four, five, six or more of them…. everyday!
10. It hurts your wallet, too…
Besides taking a toll on you physically, emotionally and socially – fibromyalgia also takes a toll financially. From medical costs to the impact on your career and income – the costs of fibromyalgia can quickly add up. This infographic illustrates the financial toll of fibromyalgia on patients:
Whether you suffer from fibromyalgia yourself or you know someone who does – there is a lot to know about this sometimes mysterious and misunderstood condition. Understanding the facts and the reality of fibromyalgia can help those suffering better understand their condition and those who don’t suffer better understand and appreciate the struggle of their friends and family who do.