Sick and Tired (of the Misinformation)

I was recently diagnosed with fibromyalgia. There is a lot of mystery and misinformation surrounding this condition, even in the medical community. To help my friends and family understand more about this, I decided to write an article about fibromyalgia.

What is fibromyalgia?

Fibromyalgia is a long-term condition that causes widespread pain all over the body. Some of the symptoms of fibromyalgia include musculoskeletal pain, fatigue, sleep problems, stiffness, headaches, and brain fog, to name a few (NHS). There are several symptoms that I experience on any given day, but each day has different ups and downs that I navigate in a constant haze of exhaustion. Because the symptoms are hard to see, people often dismiss the pain as imaginary.

It is believed that one of the reasons for fibromyalgia is the misinterpretation of pain signals by nerves and the brain. Fibromyalgia also seems to reflect deficiencies in serotonergic and noradrenergic transmission in the body’s central nervous system (Clauw, 2009). This is why the pain does not result in visible signs of damage to tissues, muscles, and joints.

So, in a nutshell: it’s not imaginary, it’s not laziness, and it’s not "all in the head".

Some misunderstandings:

“But something should come up in tests and scans, right? How come the pain comes and goes? And why does it keep varying in location and intensity like your body is some sort of pinball machine?”

Understandably, it can be hard for the layperson to wrap their head around this condition. However, dismissal of this condition also extends to many medical professionals, who instead of helping people, treat them rudely and abruptly. For instance, one doctor told me that chronic fatigue is a symptom that privileged peoples’ kids make up as an excuse to be lazy. This is extremely unprofessional and uncalled for, especially since a wide range of research showcases that fibromyalgia is a very real physical condition (Sluka & Clauw, 2016). Previously, the vagueness and lack of validated criteria for fibromyalgia excluded patients from valued research (Wolfe, 1991), however, recent research has proven beneficial in paving the way to acceptance (Clauw, 2014).

Getting a diagnosis:

The path to getting a diagnosis is usually a long frustrating one, and persistence is key. Some diagnoses are straight-forward, but unfortunately, this is not one of them. This is frequently the case with other conditions that also involve chronic pain and chronic fatigue. Often it becomes our job to research and educate certain doctors. It can be extremely draining to have to constantly have to prove that the symptoms you are experiencing are real but with time you can find the right doctor. The aim is to get an accurate diagnosis in order to find the right treatment options.

One of my GPs at university was quite helpful and took my pain seriously. While he did not have the facilities to make a diagnosis, he was able to offer me with strategies and medication to try to help some of the symptoms. After some months I found a specialist (a rheumatologist) and was diagnosed with fibromyalgia. If your doctor is unable to help or understand then finding a rheumatologist is a good bet.

Additionally, Ada is an app that I found quite useful. It is an AI-powered medical app that helps work out symptoms and information on possible causes. My friends and I have found this app to be extremely accurate and reliable. When I have entered my symptoms on several occasions, it has accurately suggested fibromyalgia. People are understandably wary of internet diagnoses, especially since Google often comes back with very dramatic answers to your 'why does my stomach hurt' search, when all you have is some indigestion.

However, research by Wired has shown that the Ada app is the best (Burgess, 2017). This can help you to be more confident and advocate for your health when met with resistance. While symptom checkers can be useful, it is important to remember that they are checkers and not a substitute for medical help. Ada considers this and allows you to share reports from the app with doctors. It is also beneficial to track symptoms over time to assess changes.

What every day feels like:

One of the challenges of fibromyalgia is trying to explain the symptoms to others, especially since symptoms can vary greatly from day to day and person to person. Waking up each day is like playing a guessing game of what symptoms today will hold, a game that you are bound to lose.

Adrienne Dellwo came up with the perfect analogy in her article entitled ‘What’s Going On? Understanding Fibromyalgia’. She compared fibromyalgia to the act of throwing a party. Imagine you’re expecting 20 guests and few friends said they would come to help you to set up. However, your friends don’t show up to help and instead of the 20 expected guests, you receive 100 people.

This situation is comparable to the pain in fibromyalgia: the cells are sending too many pain signals (party guests) and we do not have enough serotonin (the friends who were meant to help) to deal with the pain. Dellwo's example perfectly exemplifies what I was not able to put into words myself.

Hopefully this article has helped to remove some of the mystery surrounding this condition, and you now know better than to doubt its existence.

While living with fibromyalgia is hard, having considerate and supportive people in your life can help to make it much easier.

References:

Burgess, M. (2017). Can You Really Trust The Medical Apps On Your Phone?. [online] Wired.co.uk. Available at: <https://www.wired.co.uk/article/health-apps-test-ada-yourmd-babylon-accuracy> [Accessed 27 May 2020].

Clauw, D. J. (2009). Fibromyalgia: an overview. The American journal of medicine, 122(12), S3-S13.

Clauw, D. J. (2014). Fibromyalgia: a clinical review. Jama, 311(15), 1547-1555.

Dellwo, A., 2020. What's Going On? Understanding Fibromyalgia. [online] Verywell Health. Available at: <https://www.verywellhealth.com/a-simple-explanation-of-fibromyalgia-716142> [Accessed 27 May 2020].

nhs.uk. n.d. Fibromyalgia. [online] Available at: <https://www.nhs.uk/conditions/fibromyalgia/> [Accessed 24 May 2020].

Sluka, K. A., & Clauw, D. J. (2016). Neurobiology of fibromyalgia and chronic widespread pain. Neuroscience, 338, 114-129.

Wolfe, F. (1991). Fibromyalgia. In Prognosis in the rheumatic diseases (pp. 321-332). Springer, Dordrecht.