Welcome to the second part of the fibromyalgia framework series.
The fibromyalgia framework series is going to present my (evolving) view of managing fibromyalgia. In 2018 some of my strongly held theories were proven true by experience and research. I’ll share this with you.
Did you see the first part and download your free Fibromyalgia Framework Puzzle and Grid template?
Fibromyalgia Framework Part Two Video
Diagnosis, Misdiagnosis and Fibro Books
WHAT IS FIBROMYALGIA?
For a succinct introduction to the definition, symptoms, diagnosis and treatments for fibromyalgia see this post here.
Essentially, fibromyalgia is a chronic pain-based illness of unknown origin and cure. It effects approximately 3-6% of the world’s population. It is said to effect far more women than men, but there are definitely men who suffer with it too. It appears in-discriminatory in race, education level and socioeconomic demographics. As I said in the first part of this series, it is complex in that it is triggered, manifests and is helped by very different things for different people. Diagnosis and misdiagnosis is also a problem.
There are not many fibromyalgia fighters who have a short diagnosis story. A study of 800 patients found it took an average of 2.3 years and seeing 3.7 doctors prior to receiving a diagnosis. It took me several years as the symptoms came on slowly and I was young; the doctors were disinclined to believe me, especially as my symptoms and their severity changed.
It is a tricky diagnosis: Fibromyalgia is often referred to as a “wastebasket” diagnosis. Doctors do have to rule out other illnesses before they can diagnose it. There is no specific test for Fibromyalgia that is widely used yet. The symptoms are very generalised: widespread pain on both sides of the body (subjective) for at least three months, fatigue, difficulty sleeping and difficulty concentrating. The tender point count used to be one of the defining features of diagnosis; however, tender points were found to be unreliable – you needed 11 of 18 to be diagnosed, and some days, you could have at least that many; others, you may have less. Often, you also have to find a doctor who wants to help you and believes in fibromyalgia. I do so hope this is becoming a thing of the past, but it certainly was an issue for me.
Diagnosis may not change much for you; I was already on Amitriptyline, so the doctor basically gave me the confirmation and sent me on my way. But when I was ready, and when the world had caught up with some information, this word led my search. It is also important to note that not everything you experience will be the fibromyalgia. For years my severe neck pain was considered part of the fibromyalgia and therefore not looked into further. However, the fact that the physiotherapist could feel a reason for the pain (trigger points) and treat it (temporarily) in a manner that didn’t work for any of the rest of my pain made me curious. It wasn’t until 2017 that I met a physiotherapist who told me about trigger points and myofascial pain syndrome that it all clicked into place. Researching this avenue has brought me much more success than just thinking it was the fibromyalgia.
During pregnancy, I experienced severe back and pelvis pain that was also dismissed as part of my experience of fibromyalgia and pregnancy. It turned out it was pelvic girdle pain and is treatable. Without proper diagnosis and treatment, rather than have the pain disperse once I gave birth, it continued for several months after. I experienced a lot of unnecessary pain. So please don’t let your doctor throw every single thing you experience into the fibromyalgia wastebasket.
One issue with fibromyalgia, besides the difficulty in obtaining a diagnosis and help, is misdiagnosis. One research paper puts it this way, “There is a disturbing inaccuracy, mostly observed to be over diagnosis, in the diagnosis of FM by referring physicians. This finding may help explain the current high reported rates of FM and caution physicians to consider other diagnostic possibilities when addressing diffuse musculoskeletal pain.”
One doctor who writes about fibromyalgia, David Brady, posits that as many as two thirds of patients may be misdiagnosed. Interestingly one of the things that he finds often misdiagnosed as “classic fibromyalgia” is myofascial pain syndrome. Whereas in my case, there is the presence of both – which adds another layer of complexity to these illnesses. Other issues mis-attributed to fibromyalgia include thyroid problems and nutritional deficiencies as well as other illnesses.
For an interview with him about misdiagnosis see this blog post from Fed up with Fatigue. I also mention his book, The Fibro Fix in my post on my five favourite books for fighting fibromyalgia below.
MY FAVOURITE BOOKS FOR FIGHTING FIBROMYALGIA
I highly recommend reading From Fatigued to Fantastic (2001) by Dr Jacob Teitelbaum and The FibroManual: A Complete Treatment Guide to Fibromyalgia for You and Your Doctor (2016) by Dr Ginevra Liptan. These two authors are doctors who have fibromyalgia themselves. Their processes are useful and a very good place to start. I re-read these books periodically for a reminder or when I am exploring a new area.
See my blog post of My Favourite Five Books for Fighting Fibromyalgia for more information about these books.
 Ernest Choy et al, 2010 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874550/
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