What Is Fibromyalgia?
- Flourishing With Fibromyalgia
- Feb 9, 2024
- 7 min read
Are you new to the world of chronic pain?
Maybe your medical doctor or a loved one mentioned you may have fibromyalgia. Or maybe you’ve been researching your symptoms and you came across this condition in your search.
This can raise a lot of questions and a lot of emotions.
I get it. When it comes to health, we all want to be as healthy as possible and fibromyalgia can sound very scary.
Today, you’re in luck because I’m going to show you everything you need to know about fibromyalgia but were afraid to ask, including how to determine if you have it.
What Is Fibromyalgia?
In simple terms, fibromyalgia is a health condition characterized by widespread pain. This means that pain occurs above and below the waist, on both the right and left sides of the body.
You may be wondering “what does fibromyalgia pain feel like?”
Fibromyalgia pain can be in the muscles, joints, or both. People with fibromyalgia describe the pain sensation differently. Some describe the pain as a dull ache, a burning sensation, a feeling of tension, or feeling sore all over, as though they had worked out the day before, even if they haven’t.
With the widespread pain, people with fibromyalgia can also experience extreme fatigue. This fatigue can be so severe that it is difficult to get out of bed or perform every day activities, such as brushing your teeth or engaging in light household cleaning. Many people with fibromyalgia would classify this as more of an exhaustion, than just a feeling of fatigue.
The third core symptom of fibromyalgia is cognitive difficulty. This includes difficulty remembering names or details, thinking clearly, concentrating for longer periods of time, and engaging in conversations. Fibro Fog or brain fog are the terms often used to describe the cognitive symptoms of fibromyalgia.
Pain, fatigue, and brain fog aren’t the only symptoms people with fibromyalgia experience. People with fibromyalgia can also experience a variety of other symptoms. These include:
The huge variety of symptoms from all over the body is partly why fibromyalgia is difficult to diagnose and treat. It can be difficult for medical professionals to gather all of this information from patients in short visits. Fibromyalgia can also appear similar to many other conditions, making diagnosis tricky.
Want a quick reference guide to all of the symptoms that can come with fibromyalgia?
Who Has Fibromyalgia?
Fibromyalgia affects approximately 2 to 8% of the world’s population.
It is estimated that 1 to 5% of Canadians have fibromyalgia, which equates to approximately 378,000 to 1.8 million Canadians. In the United States, this number is approximately five to ten million adults. These numbers are staggering, yet very few people actually know what fibromyalgia is.
Fibromyalgia most often affects women, with estimates that 75 to 90% of people with fibromyalgia are women.
It can begin in childhood, but is most often diagnosed in adulthood, between the ages of 20 to 50 years. Obtaining a diagnosis of fibromyalgia can be a long and involved process, taking up to 5 years or more. Many people go on undiagnosed for many years despite meeting all of the criteria.
There is now strong evidence that fibromyalgia has a genetic component. If you have a blood-related family member with fibromyalgia, you are much more likely to be diagnosed yourself. There have also been a number of genes that have been linked with the development of fibromyalgia.
While having these genes or a family member with fibromyalgia increases your risk, it is not a guarantee that you will develop it. Studies performed on twins suggest that about half of the risk is related to genetics and the other half is related to environmental factors.
This means that even if you have the predisposing genes or a family member with fibromyalgia, it is not guaranteed that you will develop it. Genes can be turned on or off by specific events or conditions you are exposed to. Research is ongoing into what genes are implicated, how these genes affect the functioning of the body, and how environmental factors play a role in developing fibromyalgia.
How Is Fibromyalgia Diagnosed?
Traditionally, fibromyalgia was diagnosed using the Tender Points Examination. The Tender Points examination involves applying pressure to 18 specific points on the torso, both sides of the body, above and below the waist.
To meet the criteria for fibromyalgia, a person must experience widespread pain, classified as tenderness at 11 of the 18 points.
While a physical exam can be a great way to gather information about a condition, a few issues arose with the tender point examination. The first includes difficulty gauging the appropriate amount of pressure to apply at each tender point. This is subject to variability between practitioners and between different measurements in time by the same practitioner.
In addition, the performance of this exam can be incredibly uncomfortable for patients. In some patients, the tender points exam can trigger a flare in their symptoms. In research performed on this form of diagnosis for fibromyalgia, the tender point exam also tends to misdiagnose fibromyalgia in men.
The most important criticism of the tender points examination is that it does not take into account the other symptoms of fibromyalgia. There is no evaluation of sleep dysfunction, brain fog, fatigue, or the other bodily symptoms beyond pain. In light of these downfalls, the examination may still be useful; however, it cannot be the sole method of diagnosing fibromyalgia.
So if the tender points exam is out, what tools do we have to diagnose fibromyalgia?
The American College of Rheumatology now recommends using the Widespread Pain Index and Symptom Severity Score (WPI-SSS) questionnaire to diagnose fibromyalgia.
The WPI-SSS is a questionnaire that can be filled out by the individual with suspected fibromyalgia. Additionally, the WPI-SSS can be used to monitor symptoms after the initial diagnosis has been made.
On the Widespread Pain Index part of the WPI-SSS, patients are asked to check off all of the areas they have experienced pain over the past week. This portion of the questionnaire is similar to the tender point examination in locations of pain. The WPI portion is scored from 0 to 19, with 1 point allocated for each painful area checked off.
The Symptom Severity Score portion of the WPI-SSS is broken up into two parts. In Part 2a, you are asked to rate the severity of three core symptoms of fibromyalgia over the past week. The ratings of fatigue, waking unrefreshed, and cognitive symptoms occur on a 0 to 3 point scale, with 0 assigned to no problem with the symptom and 3 assigned to severe difficulty with that particular symptom.
Part 2b of the Symptom Severity Score inventories the other symptoms that commonly occur with fibromyalgia. In this section, you check off which symptoms you have experienced within the past week. There are 41 symptoms listed here.
I recommend completing the WPI-SSS questionnaire with your health care provider as the scoring can be a challenging and it is helpful to be able to ask questions as you go through it.
As you can see, the WPI-SSS is very thorough and takes into account many more symptoms of fibromyalgia than just pain.
Downfalls of the WPI-SSS include the lack of objective measures (such as lab results or imaging) to help confirm a fibromyalgia diagnosis and the emotional reaction that can occur when you see your scores. Seeing your symptoms laid out on paper can be scary and discouraging, especially before you have received any treatment. It’s normal and perfectly valid to feel this way. With treatment and dedication on your part, seeing your scores come down will be rewarding and encouraging for you to continue on your health journey.
Want your own copy of the WPI-SSS? Download Ultimate Guide To Fibromyalgia For Newbies to learn more.
Who Treats Fibromyalgia?
Fibromyalgia can be diagnosed by your regular family doctor; however, most people who suspect they have fibromyalgia see a rheumatologist to get a thorough investigation into their symptoms and to get the diagnosis confirmed.
Once fibromyalgia is diagnosed, the condition can be managed by rheumatologists, as well as family medical doctors, nurse practitioners, functional medicine practitioners, and naturopathic doctors.
Many people with fibromyalgia will also seek treatment from physiotherapists, registered massage therapists, chiropractors, osteopaths, acupuncturists, and therapists to help manage their symptoms.
I hope the fibromyalgia basics are crystal clear to you now.
The beginning of your journey with fibromyalgia can feel scary and overwhelming. You may feel like there are a million questions swirling around in your head. There is a lot to learn and you’re probably hearing a lot of negative things about fibromyalgia.
I first launched the Flourishing With Fibromyalgia Academy because there is a lack of accessible, clear information out there on fibromyalgia.
Fibromyalgia doesn’t have to be a life sentence, like so many imply. There is tons you can do to control your symptoms and live the life you’ve always dreamed of, despite your diagnosis.
Do you still have questions? No shame in that! Leave your questions and comments below. I'm always happy to answer any questions!
One thing you can do now to get started with getting control of your fibromyalgia symptoms is join the Flourishing With Fibromyalgia Academy.
References
Wolfe F, Smythe HA, Yunus MB, et al. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990;33(2):160–172. doi:10.1002/art.1780330203
Wolfe F, Clauw DJ, Fitzcharles MA, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010;62(5):600–610. doi:10.1002/acr.20140
Wolfe F, Clauw DJ, Fitzcharles MA, et al. 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Semin Arthritis Rheum. 2016;46(3):319–329. doi:10.1016/j.semarthrit.2016.08.012
1. Chinn S, Caldwell W, Gritsenko K. Fibromyalgia Pathogenesis and Treatment Options Update. Curr Pain Headache Rep. 2016;20(4):25. doi:10.1007/s11916-016-0556-x 2. Arnold LM, Fan J, Russell IJ, et al. The fibromyalgia family study: a genome-wide linkage scan study. Arthritis Rheum. 2013;65(4):1122–1128. doi:10.1002/art.37842 3. Park DJ, Lee SS. New insights into the genetics of fibromyalgia. Korean J Intern Med. 2017;32(6):984–995. doi:10.3904/kjim.2016.207
Clauw DJ. Fibromyalgia: a clinical review. JAMA. 2014;311(15):1547–1555. doi:10.1001/jama.2014.3266
Fitzcharles MA, Ste-Marie PA, Pereira JX; Canadian Fibromyalgia Guidelines Committee. Fibromyalgia: evolving concepts over the past 2 decades. CMAJ. 2013;185(13):E645–E651. doi:10.1503/cmaj.121414
Arout CA, Sofuoglu M, Bastian LA, Rosenheck RA. Gender Differences in the Prevalence of Fibromyalgia and in Concomitant Medical and Psychiatric Disorders: A National Veterans Health Administration Study. J Womens Health (Larchmt). 2018;27(8):1035–1044. doi:10.1089/jwh.2017.6622
Prevalence. National Fibromyalgia Association. http://www.fmaware.org/about-fibromyalgia/prevalence/. Accessed December 9, 2019.