Living with Fibromyalgia

Is fibromyalgia actually real? Or is it a fake diagnosis for people who whine too much?

Oh, how rich I would be if I got a penny for every person who has asked me if fibromyalgia was actually a real thing!

Let me assure me that for fibromyalgia patients, or Fibro Warriors as we like to call them around here, well for fibromyalgia patients, it is definitely and unequivocally a real thing. It is 100% real. No buts, or ifs about it. Yep, siree.

Fibromyalgia is not a hoax. Fibromyalgia is not psychosomatic. Fibromyalgia is not “all in your head.”

And fibromyalgia is certainly not a fake diagnosis for whiners!

But don’t take my word for it! Fibromyalgia has been discussed as a diagnosis for hundreds of years.

You read that right. HUNDREDS OF YEARS.

The first mention of Fibromyalgia in the medical world was in the 1500s when a French doctor elaborated on an ailment affecting some of his patients, who complained of muscle pain and stiffness.

Granted the term fibromyalgia was not used until much later, this does not change the fact that fibromyalgia has been recognized by the medical community for a really long time. 600-odd years, actually.

I’d say that’s a good chunk of time, and since the diagnosis is still around, it tells me there’s a good reason it did not disappear.

So why do people still wonder if fibromyalgia is real? I have my theories. And I’m not afraid to share them!

1- Misinformation is everywhere. EVERYWHERE!

The first and most important (in my opinion) reason why people ask or wonder if fibromyalgia is real is definitely misinformation. There is a TON of research out there proving that Fibro is real and painful. However, for many years fibromyalgia has been touted as a “mental health” issue.

This cluster of conflicting information, unclear names, and overall disdain for anything having to do with mental health has to lead to a complicated and inaccurate picture of Fibro Warriors. We are viewed as whiny, lazy sub-humans with a penchant for fakery.

Overcoming the biased and misinformed public opinion is a job in itself! Imagine having to do that while your entire body is screaming bloody murder because you have to go up two flights of stairs…

2- It’s your word against the World…

There are no visible outward symptoms jumping at people, like a broken leg or psoriasis. Therefore one must rely on the patient’s own account to recognize they have fibromyalgia.

For example, how many of you knew that the American singer Lady Gaga has fibromyalgia? You can’t tell by just looking at her! Yet, she released a movie on Netflix at the start of the month of October 2017.

In that documentary, she addresses her chronic pain issues and how they have affected her life as a performer. That should shine a bright light on fibromyalgia!

The fact remains that since you do not have any visible problem, people are always skeptical because they have to trust your word against their judgment of your physical appearance – which is that most of the time, you look like a healthy individual.

3- Show me some concrete, scientific proof.

Oh, you have to love this one. You work up the guts to talk to someone about your fibromyalgia, knowing full well that you need to grace yourself for a storm of questions.

And there it hits you in the chest, right on your sternum where your ribs connect to your breastplate. As it leaves you literally speechless.

In a mix of anger, panic as overwhelming sadness, you realize that the person whom you trusted enough to share a snippet of your life, that person uttered the dreaded words: where is the scientific proof.

Allow me to start with a comparison. Your friend tells you they have cancer. Do you ask for proof? Of course not! You empathize and ask what you can do for them.

Let’s take another example. Another friend tells you they have tendinitis in their elbow. Do you ask to see the MRI results? Nope. You don’t. Once again, you ask how you can help.

So why is it that when I tell someone that I have fibromyalgia, the (almost) universal response is, “Do you have an actual scientific proof? A true diagnosis from an actual doctor?

OUCH. Both figuratively and literally.

But I get it. There is no widely available black or white test for fibromyalgia. Sure, there was a test developed and approved in 2012. But it is still an exclusive, expensive test. And believe it or not, not every doctor out there is aware of it! But that’s a discussion for another day!

The point being, here, that most people are very much like the Bible story of Simon and Jesus Christ. He wouldn’t believe in faith alone that Jesus had risen from the Dead. But sure enough, he had. Seeing is believing, right?

In the meantime, Fibro Warriors are treated like second-class liars on a daily basis, because, certainly, we can NOT know what we are talking about!

is fibromyalgia real

4- You’re just a junkie who wants to score some oxy…

I am going to assume that you are familiar with the “one bad apple concept.” If one apple is rotten in a bag, all other apples will rot too.

Sometimes, I feel like people think that way about other people. When it comes to Fibro Warriors, it goes something like this: I once heard of a person who pretended to be sick just so they could get some painkillers. So now, anyone I know who is taking painkillers has to be a drug addict.

Let me set the record straight: just because I need painkillers to get my day going does not mean that I want painkillers. You see the difference?

As a chronic pain sufferer, I cannot function like a normal human being without my pain meds. It does not make me happy and I am absolutely looking forward to the day where I won’t have to destroy my stomach and my liver with some corrosive meds.

I am not a druggie. In a healthy brain, the painkillers do not act on the pain receptors to lessen the pain. They rather act as a euphoric factor. However, in my fibromyalgia brain, the painkillers act on just that: the pain.

Big difference, there, Mr. Skeptical… I actually need that stuff!

And if you think it makes me happy to have to take hospital-strength pain-killers and anti-inflammatory drugs before I even get out of bed, well think again! Again. I actually need all that fun stuff just so I can walk.

And it sucks.

5- Yesterday you couldn’t walk, today you’re running. Ok, then…

Yes. I know. It’s hard to wrap your head around the idea that literally everything hurts. One could even go as far as to say that, indeed, it sounds made up. I’ve been told before that I was always conveniently hurting when I had prior engagements or when someone needed my help.

Are you kidding me?!? Who would deliberately make themselves look like a flake, an idiot, and a hypochondriac all wrapped in one flimsy, flabby body?!?

Come on, people. Let’s be real, here. I know you whisper behind my back. I know you talk about me in the break room in the office. I know you discuss my “so-called *wink wink* problems,” when you go out for dinner with all our friends – a dinner which, by the way, I organized – and I canceled because I couldn’t get out of the house. I know all that. And I’m asking you to please stop.

Please.

It’s hard for me to understand it too, you know. I can’t really do anything anymore without thinking about the effects it will have on me the day after or two days after.

It’s like when you’re an athlete and you have to remember “leg day” and “arm day” so you don’t overwork your muscles all at once.

6- Fibromyalgia, fibrositis, myositis: make up our mind!

It is hard enough as it is to explain that fibromyalgia is real, now semantics get in the way. Unfortunately for Fibro Warriors, it turns out the medical community itself has been divided on the subject for centuries. Yes, you read that right: centuries.

See, fibromyalgia started as fibrosis, then fibrositis, and before it got to fibromyalgia, it underwent dozens of name changes. While the problem has remained the same throughout history, the different names have been a reflection of the times.

As the medical corps understood in more depth what the condition entailed, the denomination was changed to better designate it.

In the name of accuracy, science has led the world to think that fibromyalgia is a brand new thing. A little bit like Prince/Love Symbol – you never really know what to call it, but you sure as heck know how to spot it! (In Prince’s case, you just had to look for the purple extravaganza!)

Nevertheless, fibromyalgia has never changed in its essence, but the different appellations have contributed to a generalized mistrust. After all, we are only human; as humans, our instincts tell us to be wary of things we don’t know.

So when a condition like fibromyalgia, which is already poorly understood, to begin with, shows up under a new name, it’s only natural that people might think it’s not a serious condition. 

7- You mean to tell me that both your toes and shoulders hurt and that it’s related? Yeah right!

And that, my friends, is the epitome of fakery. Or so we hear almost every day. I can see why someone would be skeptical. Everything hurts, but rarely all at once, and the intensity can vary greatly.

Yeah, right. What’s next? You need medical attention because you’re having a bad hair day?!?

Here is where most people have a hard time keeping faith in our words. Literally, EVERYTHING hurts at some point. Yes, my toes too. Yes, my ears, my spleen, and my hips too. And yes, it’s all due to fibromyalgia.

In all honesty, it’s like when people tell me what it’s like to go skydiving. I hear their words. I see their photos. I listen to their account of how it happened and how it felt. But I still have no idea what it is really like.

The feeling of free falling from a plane in the sky is not something I can relate to. Of course, my brain tries to process the fact that you owe your life to a tiny piece of fabric, attached to your body with a few strings.

It doesn’t mean that I understand why you would do it or how the wind actually felt on your face. I’ll never know what that’s like, and not just because I’m not crazy enough to jump from a plane! But I have never experienced it personally, so I have to rely on your account of things.

And my imagination takes me places that may not be akin to reality. It’s a bit like reading a book and then seeing a movie adaptation of the same book. The characters always look different than what our minds had pictured.

Well, same with fibromyalgia. You can tell people a million times what it’s like, they will never fully understand it unless they go through it themselves.

Now, the picture I just painted is pretty dark. Sorry about that. But we need to remember that the vast majority of people does not know any better. They’re not trying to be rude. They just don’t know.

Let me offer you three ways to start making a difference in how the general public sees fibromyalgia.

1- how no shame!

 Simply put, shame shows guilt. And there is nothing you should feel guilty of when it comes to fibromyalgia. You have not chosen to have fibromyalgia. You do not enjoy feeling the way you do all the time. And you are not trying to prove anything to anyone by being a Fibro Warrior.

So show no shame, and people will see that you are not hiding anything. People around you will see that fibromyalgia is no different than any other medical condition out there. It is what it is, and you did not do anything to bring that unto you.

2- Stay calm!

Trust me, I get it. Keeping your calm when you are met with nothing but snark and mockery… well, that’s tough.

But don’t buy into a bully’s game. There is no need for you to become upset over someone else’s incredulity. The calmer you are when you receive criticism, the clearer your answer will be heard.

People tend to be on the defensive when they’re faced with anger. The last thing you need is for your interlocutor to think you’re acting irrationally! So stay calm, and field doubt and questions with the stoicism of an FBI agent undercover!

lady gaga fibromyalgia

3- Educate people!

Stop to think for a brief minute that the people you are dealing with may simply not know what fibromyalgia actually is! For us Fibro Warriors, we don’t need to think about it twice.

Not by choice but by necessity, we have become experts at this fibromyalgia thing. But before we were diagnosed with fibromyalgia, did we really know what it was? I know I didn’t.

I thought it was some kind of made up condition invented for crazy people who were annoying and needed to be handed a diagnosis to feel validated. Pretty bad, right? But that was my reality. I knew nothing about Fibro.

Educating people remains the best action we can take to reduce, and eventually eliminate, ignorance about fibromyalgia.

Now don’t go preaching, because no one likes a preacher. But be open to discussing your symptoms and what you know about fibromyalgia. If you only help one person understand fibromyalgia better, you will have given the Fibro World an amazing gift.

The fact that Lady Gaga came out recently and affirmed that she has fibromyalgia will help the Fibro Warrior community tremendously!

For some reason that I don’t necessarily fully understand, having a celebrity spokesperson will open the greater public’s eyes and will help speed the word about fibromyalgia. It’s almost like if celebrities were incapable of telling lies, therefore if a celebrity says it’s real, then it must be.

I know. It’s annoying. Why can’t people around us trust us when we talk about fibromyalgia? But you know what, Lady Gaga’s celebrity factor will help legitimize fibromyalgia.

Information is available all on the internet and your medical professional’s office. Not all information is good or accurate, so you’ll have to read what you share before you hand it out to someone. The last thing you need is bad information floating around!

The hard part here is to know when and how to disseminate the information. As much as possible, we have resources right here on www.thefibrowarriors.com that you can take to your relatives and loved ones, to your coworkers and to the other parents at Junior’s school.

The conversation about fibromyalgia can be awkward, ill give you that. I don’t know about you guys, but for me, when I tell “new” people that I have fibromyalgia, I feel like I’m whining or complaining or something. But to be honest, I don’t even tell people half of what is going on.

So I, too, am guilty of not sharing my knowledge the way I should. A good way to talk about fibromyalgia for me has been to write about it. And you can, too!

We would love to hear your opinion and thoughts on this topic. I mean, I’m sure every single one of you has run into someone one day who belittled you or mocked you for having fibromyalgia. Writing is therapeutic and cathartic. Share your story! Tell us how YOU cope!

I can’t wait to read all about you! You can comment here or email me at [email protected].

Until next time, stay strong Fellow Fibro Warriors!

About the author

Servanne Edlund

Servanne Edlund

Narcolepsy. Ankylosing spondylitis. Fibromyalgia. The perfect trifecta to sleep through life! As a mom of two teenagers, I need to keep going - so I have found coping mechanisms to overcome the hurdles placed on my path.

2 Comments

  • I had a chronic illness for many years and they tell me because of the trauma to my body I developed fibromyalgia. It took years to diagnose and I thought it must have been all in my head. It was a combination of hospital admissions and the treatment I had to have, becoming overweight from the the result of having to have copious amounts of steroids to survive and the inactivity due to the fact of being so ill. It has been a very tiring journey and frustrating and sometimes it gets me down because dealing with pain every waking moment is so tiring. I’ve had the strongest pain relief available but didn’t like the side effects so quickly stopped taking them. I’ve had other so called pain relief tablets that didn’t help but took them anyway because something was better than nothing and I needed some hope that maybe just maybe that they may work eventually but in the end I stopped taking them as well. I had to change my doctor and it too roughly six months of practically begging to get some other pain relief medication which I’d received in hospital and which had helped ease the pain a little and believe you me, any sort of relief albeit small or not helped me to get through another pain filled day. But that hasn’t stopped me from feeling like I’m being judged or tut tutted about because I take this medication three times a day which I wish I didn’t have to take. It doesn’t help a great deal but even a little relief is better than nothing. Sometimes I cry a little but that doesn’t help my situation. I’m not depressed even though the doctor still wants me to take anti depressants. But I’m so sensitive to any change in my body that I can’t tolerate the side effects so I won’t take them. So every month I have to front up to the docs so I can get my monthly supply of pain meds. And every month I feel like I’m being judged for needing a little break from pain and to be able to keep going and to have a smidge of hope that maybe this time the meds will work a little better this time. Now they want me to go to a pain psychologist because I said my body screams at me with pain sometimes so I will go. Hopefully they will be able to recommend something that will help ease the pain. Fibromyalgia is a very lonely condition and because I try very hard to not show the pain I’m in I think people have the wrong assumption that I’m not that bad, just do some exercise, lose some weight, just get up and move! Well I try! I was never in my life the weight I am now. I want to be that nice slim girl I once was. But I’m not so I deal with it. But fibromyalgia does not discriminate. It can affect anyone regardless of their age or weight. Mostly women I’ve read but men too. I’m so very lucky that I have a very supportive family and they understand when I’m having a bad day. Thank god for my family! I believe that fibromyalgia is a very misunderstood condition and people that have it can be judged quite unfairly. If someone you know or care about has it please please have some compassion for them. Because most times it has come about from having another debilitating illness and believe you me, we don’t want this. It hurts but we keep fighting and going on because there isn’t another option. I believe we are warriors and the more people out there who understand means less judgment for us and that’s gotta be a good thing. Take care.

  • Dear Servanne, Thank you for your input on Fibromyalgia, I read what was sent today and I have to say thank you from the bottom of my heart. If it were not for you, I would have tried to end my life; have been in pain since 1992 from severe whiplash (car accident). Trouble is no one believed that I was in so much pain, they thought I was making it up. I was sent to a Pain Specialist who put me on OxyContin, but I forgot that I was allergic to it, and suffered so many side effects it was not funny. Problem is I am allergic to Morphine, am unable to take anti- anything, none of the so called antidepressants or psychotic drugs. This is due to the fact that I have Long QT Syndrome, and can only take Valium, to which I find does help somewhat with the pain that I have had to endure for 25 years. Have read all that was sent and I now know that I do have Fibromyalgia, finally at last I can relate to what I have been going through all these years. Thank you ever so much for your information, it has really helped me to understand that I am not mentally ill, that I do suffer with explosive outburst etc. All I need to do is find out what I can eat, for I used to be a sort of vegetarian, am lactose intolerant, must not have wheat, no sugar or artificial sweetners. Trouble is I have to find a doctor who will listen to me, am so fed up with the medical profession, they just do not want to know. I have been told that I have a hypersensitive body as well as is my mind. By the way I am 68 years young, and to find out after all these years really astounds me, so I think you will understand as to why I do not like or think much of the medical profession, never have. They do not know my body like I do, maybe if they wore my shoes for a week, then they would understand. Again thank you so much, this has helped me to try and help myself get on top of this problem. I know it will not be easy, but by golly I will try to do something to help myself, as I am so tired of all this. It drains a person so much so, that at times you do lash out to the ones dearest to you. Again many thanks for your input. Maria. S.

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