“Fibromyalgia Isn’t Real.”
The Validity of Fibromyalgia as a Diagnosis
A lot of people seem to be questioning the validity of fibromyalgia (FM).
I was one of those people who seriously questioned and believed that fibromyalgia was “just a throwaway diagnosis” — or possibly, not even real.
Even when I got diagnosed, I didn’t start believing how real it is until at least a year later.
In this article, I share my story of getting diagnosed and the confusion and denial that followed me, as well as the frustrations of the debate of FM’s validity and further reasons why simply saying “fibromyalgia isn’t a real disease” is a lazy way of thinking.
My journey to getting diagnosed
It took me over ten years to get diagnosed.
I was twelve when I first got sick, but even when I was sick for months, I really believed that it was all temporary.
I was first diagnosed with pre-diabetes. I was shocked that pre-diabetes was what was causing my intense pain, and even though the diagnosis made me feel like it was somehow my fault, I worked my ass off to eat right and stay active.
Surprisingly, my lab results did a complete 180°. Not necessarily in a healthy way, either, given that my blood sugar was now dropping dramatically, but eventually it evened out and now I haven’t had problems since.
Unfortunately, I was still sick.
The pain was just as bad, if not sometimes worse. It was localized pain, versus the widespread pain that I suffered later on, and on top of that I had dizzy spells, weakness, and intense fatigue.
I was in middle school at the time, but I barely remember any of those years due to sleeping all the time or dissociating so I didn’t think about how terrible I felt.
I also ended up gaining a lot of weight in a short amount of time — probably due to the fact that even while I was often eating once a day, I ate a lot. Eating felt like a huge distraction from the pain.
It should be noted that before getting sick, I was a very healthy and very active girl.
By high school, the once localized pain became widespread, and newer symptoms developed almost every year.
But sometimes I was in denial that I was even sick, so I kept pushing myself, and went back to doing the things I once enjoyed — like joining the dance team.
And don’t get me wrong, I loved the dance team. I even got into a leadership position on the team.
I also hated it, because I felt like absolute death.
Then sometime after graduating high school, I ‘magically’ started to feel better.
I basically took an entire summer off to just sleep and do nothing.
Suddenly, I had my energy back. I felt amazing! And because I was in sports my entire life and generally loved being active, my first thought was “let’s go for a run!”.
And it was amazing…at first.
Then I got sick. Like, really sick.
Of course, It took me a year to finally realize why.
Turns out, I was suffering from exercise-intolerance. Which, for a girl who grew up in sports and who was hyper as hell, was kind of a joke. So, I was in denial for a bit longer.
And then when I got fired from my job and ended up dropping out of college, reality finally hit me.
OK. Reality hit me somewhat. Look, my denial was STRONG, okay?
Even when I went to several doctors to get help, a huge part of me didn’t believe this was happening. I really wanted to believe that it was in my head. I tried to believe it, but it doesn’t work like that.
Eventually, I got diagnosed with fibromyalgia.
And…well, I still didn’t believe it.
I thought Fibromyalgia (FM) was just some “throwaway diagnosis”
At least, that’s what a lot of people believed.
As if FM wasn’t even real.
That it was a diagnosis handed out like candy by doctors who just didn’t want to deal with you anymore — and unfortunately, I saw first-hand how that looked.
I was just too ‘complicated’.
I also couldn’t afford to keeping up with doctor appointments anyway.
After all, I was in my early 20’s.
I haven’t finished college.
I was still living with my parents.
I couldn’t even keep a part-time job.
I wasn’t even sure what the point was. I wasn’t even sure that Fibromyalgia was something that was real.
Was I even correctly diagnosed?
But in the past decades, fibromyalgia has routinely been “under-, over- and misdiagnosed”, according to “Fibromyalgia syndrome: under-, over- and misdiagnosis.” by Häuser, Winfried, Piercarlo Sarzi-Puttini, and Mary-Ann Fitzcharles (2019).¹
“Even in this past decade physicians still report uncertainties about how to diagnose FM” The paper continues, which “often extends to many years, with innumerable clinic visits, investigations and specialist consultations, all contributing to the personal and societal burden of FM.”
In other words: FM is real, but that doesn’t mean that everyone diagnosed is correctly diagnosed, and there’s still many more who aren’t diagnosed.
So, the next question I had was…
“Do I really have fibromyalgia?”
It may be difficult to get an accurate diagnosis of any chronic illness, but my research (including peer-reviewed and credible sources), said that yes, I do have fibromyalgia.
But it wasn’t just “pain and fatigue” like a lot of people think.
“Fibromyalgia (FM) is characterized by chronic widespread pain, unrefreshing sleep, physical exhaustion, and cognitive difficulties.” writes Winfried Häuser and Mary-Ann Fitzcharles.²
However, there is also a list of other symptoms that are involved in FM, such as altered pain perception, generalized hypersensitivity, altered cognitive function, pain amplification, sleep disturbances, and more. In addition, “the findings that FM patients not only perceive themselves to have altered memory and concentration (“fibrofog”), but also in fact perform poorly on multiple cognitive tests, even when depression is excluded as a contributing factor, suggest that there are alterations in brain function”.³
My point is, fibromyalgia is NOT just widespread pain and fatigue. But even if it was, it’s important to remember how daily, chronic pain affects the whole person.
Frankly, for a really long time, I had just figured that my diagnosis was wrong or that I had something else, too. I hated constantly searching for some diagnosis. All I wanted was treatment plans that worked.
All I wanted was to get better.
But it’s hard to find treatment plans when doctors often medically gaslight you, don’t want to deal with you because of how “complicated” your health is, or even because there is not a lot of research on the treatment of FM — too many people seem to be debating its validity, first.
Why do people think FM is “fake”?
I hate seeing Reddit posts like this:
Or this:
It’s sad to see how there seems to be more articles either expressing how FM is fake or real versus discussions about treatment.
Even Harvard Health wrote an article about how FM is definitely a real disease.
But sadly, I have also noticed that many of these articles only mention the “widespread pain” and almost no other symptoms FM sufferers tend to experience.
Like cognitive or immune symptoms, for starters.
The truth is, there is a large percentage of diseases that are not understood.
A lot of them start by ruling other diseases out, first.
And invisible illnesses, like fibromyalgia, are a real thing.
Trust me, if I wasn’t sick, I would have moved out of my parents’ house by now.
In truth, people believe it’s a fake illness because they don’t want to deal with it.
But also, because so many people are a “see to believe” type of person, and most of the symptoms of FM are experienced by the person who is sick.
But even autoimmune diseases can have normal lab results for 10+ years until they show something wrong.
It’s called practicing medicine for a reason.
There is still research being done on invisible illnesses like fibromyalgia, and one research study has even shown possible reduction in gray matter in the brain in FM patients.³
Either way, it’s still being researched, and while one person who is diagnosed with FM might be incorrectly diagnosed, another person who is diagnosed might not be. This doesn’t constitute as FM being “fake” by a long shot.
And not everything should be blamed on depression or laziness, either.
Then again, it does seem lazy to decide that fibromyalgia is fake rather than accept the idea that not every disease is fully understood yet.
Sources
¹Häuser, Winfried, Piercarlo Sarzi-Puttini, and Mary-Ann Fitzcharles. “Fibromyalgia syndrome: under-, over-and misdiagnosis.” Clin Exp Rheumatol 37.Suppl 116 (2019): 90–7.
²Häuser, Winfried, and Mary-Ann Fitzcharles. “Facts and myths pertaining to fibromyalgia.” Dialogues in clinical neuroscience (2022).
³Ceko, Marta, M. Catherine Bushnell, and Richard H. Gracely. “Neurobiology underlying fibromyalgia symptoms.” Pain research and treatment 2012 (2012).
