When I was first diagnosed with fibromyalgia, I had no idea what a syndrome was. Maybe you didn’t, either.
Fibromyalgia is a syndrome, not a disease. But what’s the difference between a syndrome and a disease? Are diseases more important than syndromes?
Typically, a disease has common symptoms and a treatment protocol and involves one or more organs. Some diseases are autoimmune, which means your body is attacking itself. An example would be ANCA-associated vasculitis, an autoimmune disease that affects the kidneys and other organs. Treatment for ANCA-associated vasculitis is usually a combination of immunosuppressive medications.
In an interview for “The Scope,” Dr. Kirtly Parker Jones differentiates between syndromes and diseases: “Disease is typically manifested by distinguishing signs and symptoms. A disease usually has a defined or understood cause, process, and treatment.”
A syndrome, on the other hand, is a collection or group of symptoms that frequently occur together. Thus far, no underlying cause has been established for fibromyalgia, so it is considered a syndrome. If that changes, it could be classified as a disease.
Later in the interview, Dr. Jones explained syndromes:
“Syndromes are defined by a group of signs or symptoms. And you may not have to have all of them, but you might have two from one group and one from the other to have a syndrome. It is not a disease. Some women with a syndrome aren’t really very ill. And there is no clearly understood process that pulls all the patients together into a group that has a single cause and a defined cure. See why my patients and I are frustrated? Sometimes a syndrome is a bunch of symptoms that we aren’t smart enough yet to understand, and the underlying specific disease process and treatment has not been figured out yet.”
I also have chronic fatigue syndrome (CFS), which was classified as a disease nearly five years ago. CFS is now also referred to as systemic exertion intolerance disease. My personal belief is that in the not too distant future, fibromyalgia will also be classified as a disease.
I don’t know what it is about the word “syndrome,” but it sounds like it’s not a real illness. People relate better to the word “disease,” I think. It’s more concrete and more easily defined.
Regardless, know that fibromyalgia is real and no less important than a disease. Suffering is suffering.
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