The Spoonie Saga

Today – May 12th – is the International Fibromyalgia & ME Awareness Day. In light of that, I thought it fitting to write a post about Fibromyalgia, as it is a chronic illness I live with.

Fibromyalgia (or fibro for short) is a medical condition characterized by chronic widespread pain and an heightened pain response to pressure. In layman’s terms, this means that people with fibro experience persistent moderate to severe pain 24/7 in all four quadrants of the body, and if someone were to put pressure on any part of their body, they would experience more pain than the norm. Another common trait of the illness is that symptoms get worse with shifts in weather, much like arthritis.

It is a complex chronic illness, in that it is diagnosed by exclusion: When no other cause for the potential 200+ (as reported by patients with the illness) symptoms is to be found, the likely diagnosis is Fibromyalgia. There is no definitive test that can be done to check if you have it (as of yet), and there is no cure – only management of symptoms. The cause of it is unknown, but it is believed to be partially genetic and partially environmental factors that trigger it.

Widespread chronic (meaning present for most of the day, every day, for 3 months or more) pain is the most common symptom. Other major symptoms include chronic fatigue, disturbed / poor sleep, heightened pain response to tactile pressure, digestive problems, periods of cognitive dysfunction – often called fibro-fog or brain-fog – and several other reported symptoms associated with the illness. For many, anxiety and depression also occur as a symptom or co-morbid condition.

Living with Fibromyalgia is exhausting, painful and stressful. Managing it is a matter of dealing with the pain, light exercise to prevent muscle atrophy, maintaining a healthy diet, and regulating sleep to help prevent flare-ups of symptoms. Everyone with the condition is different, and require specialized treatment / management plans for their specific set of symptoms and flare-triggers, though. Finding what works, and at what intensity (as with exercise, for example), is a lengthy process.

Most of us living with Fibromyalgia are experts in hiding our symptoms. It’s called an invisible illness for that very reason. Just by looking at me, you most likely can’t tell that I’m in so much pain just from standing up for more than a few minutes that I could pass out. I look normal, I look fine.

This is why Awareness Days are important, in my opinion, especially for invisible illnesses, as they are largely overlooked – including by health professionals. Getting adequate treatment for such is a never-ending battle where the person has to “prove” time and time again that they are in fact chronically ill, in spite of looking “fine”.