Recently, I had a friend ask me what is fibromyalgia? Well…my body doesn’t process pain correctly. But it’s more than that. My body aches, my muscles cramp and twitch, I’m hot, I’m cold, I can’t sleep, all I want to do is sleep, I’m exhausted….I can’t remember things…wait…what did you ask me again? And on it goes.
I can almost guarantee that if you have fibromyalgia, you’ve had a similar experience. Try explaining to the average person what fibromyalgia is. They stare at you like you have six heads, don’t they? Or their eyes glaze over at our long-winded explanations. Most of the time, we don’t even comprehend the full spectrum of our diagnosis. How many doctors have you visited over the years just trying to understand your diagnosis and symptoms, let alone trying to find relief? I know how many doctors I’ve graced with my presence.
Do you understand what causes your fibromyalgia pain and can you easily explain it to others? According to a study by Robert Ferrari, M.D., along with a team of primary care physicians, these two questions are the source of frustration among most people diagnosed with fibromyalgia.*
“Fibromyalgia patients have long been described as having a disorder that lacks face validity,” writes Ferrari. “The feeling or implication that one’s symptoms, especially pain, is described as ‘medically unexplained’ is of concern to patients, to the point of being offensive.”
“It is not accuracy and proper explanation that matters in one’s sense of understanding,” claims Ferrari. Perhaps people with fibromyalgia have too many symptoms and too much information about their likely causes, which makes it more difficult to put into a few words, like “arthritis” and “inflammation.” For whatever reason, people tend to automatically understand these two words mean serious pain.”
Attempts to explain your fibromyalgia in terms of everything that is going wrong in the nervous system and the muscles could be overwhelming. After all, scientists are still trying to iron out the details of what causes fibromyalgia pain and other symptoms.
So, what exactly is fibromyalgia?
The word fibromyalgia comes from the Greek myos meaning “muscle”, Greek algos meaning “pain”, and New Latin fibro meaning “fibrous tissue”. According to MediLexicon’s medical dictionary, fibromyalgia is “A common syndrome of chronic widespread soft-tissue pain accompanied by weakness, fatigue, and sleep disturbances; the cause is unknown.”
Fibromyalgia is a common and chronic condition. When a health illness or condition is called chronic, it means it is long-lasting. Even though fibromyalgia is frequently referred to as an arthritis-related condition, it does not cause joint damage or inflammation, as arthritis does. Neither does fibromyalgia cause damage to muscle and other tissues. However, it is similar to arthritis because it causes severe pain and tiredness, and can undermine the patient’s ability to go about her daily activities. Fibromyalgia is seen as a rheumatic condition. A rheumatic condition is one that causes joint and soft tissue pain.
Is fibromyalgia a disease or syndrome?
A disease is a medical condition that with defined causes and a clear set of symptoms. Fibromyalgia is classified as a syndrome, which means that it is a collection of signs, symptoms, and medical problems.
There are so many symptoms related to fibromyalgia, and they vary widely from person to person, that it’s difficult to narrow down a clear set of symptoms. It’s also an extremely difficult syndrome to diagnosis and treat.
Okay, great, but you still haven’t told me how to explain what fibromyalgia is!
You’re right. Because there is no easy answer. Since fibromyalgia is made up of so many concurrent symptoms, there’s no single, correct answer to give others or yourself. Frustrating, I know, but until scientists figure out more definitive answers, we’re stuck trying to muddle through making up our own explanations.
Now, most of the time, when someone asks me what is fibromyalgia, I tell them that my body doesn’t process pain correctly. I give them the example that if they stub their toe, it hurts like hell for a few moments and then the pain goes away. For me, it hurts like hell for hours on end and I can barely walk. You would think that I broke my toe instead of just stubbing it on a piece of furniture.
While this isn’t an all encompassing description, it at least gets the point across. Stop by on Friday, 9/21, as I talk about the history of fibromyalgia and on Thursday, 9/28, I’ll share the symptoms and causes of fibromyalgia.
As long as I remember to….it’s that fibro fog, you know (more about that later).
If you ever have a question, concern, etc. regarding fibromyalgia, don’t hesitate to contact me !
How have you tried to explain your fibromyalgia to friends and family? What was their response? Has any explanation worked for you? I’d love to hear it!
Every Friday on Kat-Collins.com is Fibro Friday! I will share everything about fibromyalgia, including my own personal journey living with an “invisible illness.”
* Ferrari R. Quantitative assessment of the “inexplicability” of fibromyalgia patients: a pilot study of the fibromyalgia narrative of “medically unexplained” pain [published online ahead of print]. Clin Rheumatol. July 22, 2012.