Living with Fibromyalgia

I have fibromyalgia and no one believes me, not even my doctor

How do I talk to my doctor about fibromyalgia?

This is, unfortunately, a very common question among Fibro Warriors. Very often, an individual will suffer from chronic pain, joint dysfunction, Fibro Fog and sometimes added issues that are commonly associated with fibromyalgia.

Unfortunately, there are still way too many people who are afraid or ashamed when it comes to discussing fibromyalgia.

1- Isn’t fibromyalgia just made up?

Despite having been around for literally centuries, the diagnosis of fibromyalgia is one that is grossly misunderstood. Because a lot of the diagnosis is based on faith that the patient has accurately reported his or her symptoms, there is a lot of skepticism regarding fibromyalgia.

A huge gap between visible and invisible conditions exists, and it is tough to deal with it. No one should ever question a person with a broken arm. Yet people are often receiving the need that a loved one has fibromyalgia with disbelief.

There is an outlandish number of people who think fibromyalgia is “all in your head,” or “fake,” or even “a try to get attention.” Not only does this negative attitude prevent the research on fibromyalgia to be taken seriously and recognized, it also leads to isolation and shame for Fibro Warriors.

If you are healthy, imagine for a moment being told that your friend, your aunt, your coworker has fibromyalgia. Your first instinct may be to silently question the veracity of their condition. After all, looking at someone, you can’t tell whether or not they have fibromyalgia.

It would be so easy to lie about it…

Here is the thing: people who don’t have fibromyalgia and who don’t understand the struggles fibromyalgia patients have to deal with may be tempted to use the diagnosis of fibromyalgia as a sort of screen or shield to hide their non-medical shortcomings.

For example, it is possible someone may call in sick at work, or skip their turn to host Thanksgiving dinner, by using a fake fibromyalgia diagnosis.

But let me be clear with you: people who have actually been diagnosed with fibromyalgia do not fake any of it. Ever. Because it is no joking matter.

A true fibromyalgia patient may not have a cast on a broken leg or a bandage over their head that helps identify them as “real” patients, but a true fibromyalgia patient will definitely look exhausted, disoriented at times, unable to do anything one day and move mountains the next, and will be unequivocally unwell.

2- Are you sure that’s a real thing?

Just picture this for a moment. You have no access to any kind of device that could assess injuries. No X-rays, no CT Scan, no MRI. Nothing. You fall from a tree and you are absolutely certain you have a broken leg, but the doctor doesn’t think it’s actually broken.

He tries to explain the bruises by telling you-you must have tripped on your shoes and hit the coffee table. The blood running down your leg is just a result of eating spaghetti: you were so sloppy, you dropped some on your leg.

The broken bone sticking out of your leg is nothing related to your fall either. It’s actually a calcification problem and you can cure it with vitamins or something. Yeah, that’s it.

You definitely don’t have a broken bone because that doesn’t even exist. People made that up because they can’t explain some of that stuff, so yeah, science and vitamins and stuff.

In any case, you’re making this up because you’re lazy. You’ve always wanted attention, so that’s your latest scheme for people to pity you. Ugh. But if you insist enough, you’ll annoy your doctors who will give you duct tape and WD40. That stuff fixes everything. Stop whining.

That sounds ridiculous, right? I mean, how could any doctor say that a broken bone is pretended. Seriously. That would never happen, right? Broken bones have been around for as long as humans have lived.

There is absolutely zero need to question anyone who says they have a broken bone. Even without tests and what not, how could you not trust that the person who traipses around in a cast actually has a broken bone? That would be stupid, and hurtful!

Now go ahead and replace “broken bone” with “fibromyalgia.”  I can guarantee you that if you won’t find it ridiculous anymore, then you know nothing about fibromyalgia.

In fact, that is pretty much what Fibro Warriors have to deal with. Every. Single. Day.

Can you put yourself in a fibromyalgia patient’s shoes for a minute? The daily humiliation of having to deal with people who think you are not actually sick.

The shame of trying to explain a diagnosis that is not respected. The embarrassment of sitting with people belittling and mocking Fibro Warriors. The silence you are forced to keep so you are not stigmatized by incredulous, undereducated individuals.

And imagine the distress of having the people who should love you the most, and those you should trust the most, and those who should trust you the most…having those people tell you that what you say you have does not exist.

Imagine your doctor telling you fibromyalgia does not exist.

3- If it’s real, then show me a doctor’s note!

Where the problem lies is that often doctors and medical professionals may not understand fibromyalgia. So now you are faced with a doctor who disagrees with science and tells you it’s all made up. How can you justify your situation when even your doctor thinks you’re healthy?

That is sadly the reality way too many people have to deal with.

Fibromyalgia has been a controversial topic for many, many years. What people don’t realize is that fibromyalgia has been around for a long time!

The reason why so many people are mistaken in thinking that fibromyalgia is a “new” condition dreamt up by bored housewives is that the actual term “fibromyalgia” is a recent addition to the medical vocabulary.

It has been called many a thing over the years, and the medical community finally settled on the word “fibromyalgia” in the 1990s.

Trying to get information on fibromyalgia 20 years ago was like trying to snap a picture of Big Foot. It just wasn’t going to happen, unless you asked some highly specialized weirdo living in the woods somewhere.

Now if you had tried to get information on fibrositis, fibrosis, or myosis, heck you would have been able to find the equivalent of an Encyclopedia Universalis!

The public as a whole has had no issue realizing that bloodletting wasn’t exactly the best, despite it being the main remedy to almost everything back in 1663. Yet the same public cannot grasp the fact that science has evolved when it comes to myofascial pain.

Fibromyalgia may have been a crazy far-fetched diagnosis 30 years ago, but today it is actually something that is a reality many have to deal with.

Where things become complicated is when your own doctor is stuck in 1998. While you admire the ease with which she rocks that denim scrunchie in her crimped hair, you wish she would just embrace the 21st Century. And, you know, science and what not.

“Old school” doctors may not be abreast of recent discoveries. They may not agree with science for whatever reason. They may think there is no merit in naming something they think isn’t real.

“Old school” doctors may even be sexists, even ageists. You know, women complain about everything, and so do old people. Don’t even think about getting them started on old women!

is fibromyalgia real or fake

4- Can my doctor think I’m making it up?

Unfortunately, that is a possibility. A crummy possibility, but a possibility nonetheless.

Being faced with a doctor who brushes off your symptoms can be quite challenging. Not only is it disappointing, it can also be soul crushing.

The one person who should be able to bring symptom relief in your life becomes the person who ridicules you for having brought up fibromyalgia. The one person who could have validated your concerns suddenly becomes the person who drills doubt deep your mind.

How in the world can you compete with someone who has years and years of schooling and experience, someone who usually knows more than you do about everything medical?

How do you get back up after receiving this hard a blow?

The easiest answer is to tell you to switch doctors. Surely, the uninformed doctors are the minority these days.

But what it your insurance company restricts who you can consult? What if your geographical area does not afford you another choice? Well, you’re stuck with the doctor who thinks you’re crazy

Your only viable chance will be to convince your doctor that you are not imagining your symptoms.

5- How do I convince my doctor I may have fibromyalgia?

Let me establish a fact first: I sincerely believe that doctors and medical professionals know more than I do about a whole lot of things.

I believe that most of them are reasonable people who can see the validity of research based on the scientific method. I believe they are intelligent, mostly well-educated people.

But I also believe they can become complacent over the years. I believe they may become set in their ways and reticent to embrace newer research. Kind of like my mom who will not let her flip phone go to phone-heaven. She refuses to use a smartphone with a touchscreen. I

n a weird way, fibromyalgia is the iPhone of the medical diagnosis world. Doctors have heard about it. They think it is possible they could use one, but they don’t think it’s necessary to really pay attention to it. It’s probably just a fad anyway.

So how do you convince your doctor to look into a fibromyalgia diagnosis?

1- Approach your doctor when you feel you have gathered enough evidence to support your claim. In other words, don’t just throw fibromyalgia at your doctor without concrete examples of why you think you may have fibromyalgia.

2- Try not to be too emotional when you talk to your doctor. Trying to understand you through screams and tears will likely yield zero results. Or at least zero positive results.

3- Have some research material handy. It doesn’t mean you should print off the entire internet. But maybe have a list of websites to direct your doctor too, so he or she will have a baseline of reliable material to study. If I may, I would suggest www.thefibrowarriors.com. I may be biased.

4- Keep track of the symptoms you think may be related to fibromyalgia. Keep a journal that establishes facts, not just vague accounts. For example, keep track of your Fibro Fog days, your “can’t move a toe” days, a record of what hurts when, maybe even a diary of what foods trigger your symptoms, etc. In other words, anything that could offer an educated insight into your lifestyle, to show you’re not just imagining aches and pains that don’t exist.

5- Don’t bring up things that have nothing to do with anything. By that, I mean don’t talk about how your hairstyle or some other irrelevant facts. Keep it to the point. Don’t drown your legitimate concerns amid the minute stuff.

6- Remain respectful. Even if your doctor does not fully believe in the legitimacy of fibromyalgia, antagonizing him or her will not help your case. Presenting your research and proof in a calm manner will be far more effective than telling your doctor he or she is an idiot!

7- Make sure your symptoms are actually related to fibromyalgia. I understand that a lot of side symptoms can be linked to fibromyalgia, making it difficult to know what to exclude. But maybe do a quick internet search to see if what you are feeling is related to fibromyalgia.

8- Do not be closed minded. After all, you are the one asking your doctor to expand their horizons to allow for a better understanding of fibromyalgia. Do not automatically shoot down the alternate diagnosis your doctor may come up with! There are many conditions that mimic fibromyalgia and vice versa.

6- And what if the doctor still doesn’t believe me?

Oh, that’s a tough one. That’s a tough and heartbreaking situation. I wish I had a good answer for you.

But realistically, if you present your doctor with tangible evidence as well as encourage him or her to look into the scientific research that has been accumulating over the years, chances are you will at least grab his attention.

And that’s a good start. You can’t expect a doctor who has refused to listen to the scientific community’s consensus to switch opinions the moment you talk to them about fibromyalgia.

Our collective efforts, as Fibro Warriors, will change the way the world sees fibromyalgia. It won’t help you in the short term if your doctor thinks fibromyalgia is not real, but maybe you can find comfort in the thought that you are doing all the right things.

In the meantime, and if you are absolutely unable to find a more reasonable and compassionate doctor, you could ask your doctor to help you relieve symptoms for your various “comorbidities” (the other medical conditions that thrive alongside your fibromyalgia).

A chronic fatigue problem can be boosted. An irritable bowel issue can be controlled. For whatever symptom you are experiencing, you are entitled to finding symptom relief.

It may not be the validation or acknowledgment you are hoping for, but it will improve your quality of life. It’s not ideal, but it’s better than living in pain.

Thankfully, this is not something we have to endure at every doctor’s office anymore. The vast majority of medical and healthcare professionals have educated themselves extensively regarding this condition. They understand how debilitating it can be, and how overwhelming it always is.

Fellow Fibro Warriors, I would love to hear how you deal with the refusal from the medical field to acknowledge fibromyalgia.

In the meantime, keep up the good fight!

Thanks for reading this article! Let me disclose that I am not a doctor or a healthcare professional in any way, shape or form.  The articles I write simply tell my story.

I want to share with others what it is like to have fibromyalgia, with the ups and the downs that come with it. I am not one to sugar coat things, so you can expect blunt honesty from me. My goal is to relate real stories, real feelings, and real physical sensations.

It may not be “politically correct” at times, but it is a reflection of my personal experiences. If you would like to share your story with our Fellow Fibro Warriors, feel free to email me at [email protected].

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.

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