Is there a test to diagnose fibromyalgia with absolute certainty? This is the ten million dollar question. And the short answer is, “No.”
I understand this is most likely not the answer you were hoping for, and it certainly does not seem helpful at first glance. But just because there is no foolproof method to diagnose fibromyalgia does not mean no one knows what fibromyalgia looks and feels like.
As a matter of fact, the research associated with fibromyalgia and its symptoms has grown exponentially in the past 50 years. Fibromyalgia is no longer a taboo disease that you should be ashamed of.
Just to clarify, there was never a time you should have been ashamed of having fibromyalgia. But realistically, the majority of the population thought for the longest time that fibromyalgia was kind of an “everything but the kitchen sink” diagnosis.
It was one of those misunderstood conditions that just had to be all in the head of the patient; probably some desperate attempt at getting attention; or a way to get out of doing unpleasant things, like working or going out with your friends.
Before we go any further into the different ways nowadays available to patients and practitioners in order to diagnose fibromyalgia, let me make sure everyone understands this: it is not fun to be unable to work; it is not pleasant to have to cancel plans all the time; and it is definitely not enjoyable to spend most of your waking hours in nagging, sharp pain.
Now that this is established, let’s take a look at how someone can get diagnosed with fibromyalgia.
1- Only a healthcare professional can give you a definite fibromyalgia diagnosis
It is important to understand that fibromyalgia can only be diagnosed by a healthcare professional. You may have some strong intuition, and you may “fit” into all of the criteria normally considered to diagnose fibromyalgia, but it does not mean that you necessarily have fibromyalgia. Unfortunately, there are many conditions that could masquerade as fibromyalgia.
No matter how informed you may be on the condition, it is fair to say that the only diagnosis that will actually matter is the one your doctor gives you.
Whether you are asking your work supervisor for special accommodations, or whether you are applying for supplemental income benefits, the only diagnosis that will have any kind of weight in your file will be the one an actual healthcare professional has delivered.
Don’t delay a visit to your doctor’s office. The biggest benefit will of course, be the eventual symptom relief options your healthcare professional can offer you.
2- Your family practitioner or general practitioner may be able to give you a preliminary diagnosis.
The first step in your journey to diagnose fibromyalgia will be to go see your “regular” doctor. It can be a family practitioner, or a general practitioner, or a nurse practitioner. But it cannot be a doctor who has never seen you before.
A big part of diagnosing fibromyalgia is the consistency of symptoms over time. Your doctor will have to record the frequency of symptoms and establish a rigorous timeline. It is a long process, but it is a necessary evil.
But the tricky part here, requiring the most patience, is that your family doctor may not be able to give you a definite answer.
For all intents and purposes, your regular healthcare professional can use a preliminary diagnosis to prescribe therapy and possibly medication to help you cope with your fibromyalgia symptoms.
3- You will most likely be referred to a specialist.
Your doctor might have to refer you to a specialist. That is not because they don’t know what they are talking about. It is simply that more often than none, a confirmation diagnosis coming from a specialist is mandatory for insurance companies to accept the treatment plan as valid.
I am not saying that I agree with this at all, but it is the standing operating procedure for most insurance carriers as of November 2017. There is not much we can do about it. And there is not much we can say about it either.
4- Neurologist or rheumatologist?
Now that we have established that you will, in all likeliness, need to see a specialist, who will it be?
There two types of doctors who can diagnose fibromyalgia for sure: a rheumatologist or a neurologist.
The rheumatologist is a doctor who specializes in everything that has to do with muscles and joints. They take care of patients with arthritis, for example.
When it comes to fibromyalgia, a rheumatologist will look for symptoms and aspects of fibromyalgia that affect your entire body structure. Think of it as a doctor who looks for anything “mechanical” that may be amiss in your body.
The neurologist is a doctor who specializes in everything that has to do with the brain and the nervous system. We may think of the nervous system as having a negative connotation, sometimes related to a person’s mental health.
After all, we do refer to a “nervous breakdown” as an undesirable condition. However, we must understand that the nervous system is actually anything and everything that deals with nerves, nerve endings, pain receptors, etc.
When we look at fibromyalgia patients, the neurologist will take a closer look at how your brain interprets nerve signals.
The neurologist will look at how your brain behaves when it is stimulated. In other words, this doctor will look at the command center to see if your brain is giving out and interpreting messages appropriately.
It must be noted that most times, a rheumatologist is asked to give his or her professional opinion rather than a neurologist. Also, it is possible that your doctor may want you to see both a rheumatologist and a neurologist.
I would urge you to check with your insurance company to make sure the specialists you are being referred to are part of their network. Being stuck with a huge bill from a specialist is not the type of added stress you need on your journey to figure out a diagnosis. I have personally had the experience of an in-network doctor sending me to a specialist who was not in-network. That was a double ouch.
5- What are they looking for?
What they are looking for will greatly depend on who you see.
For example, a rheumatologist will be looking at mechanical functions in your body. They may try to irritate one of the nine pairs of trigger points that have been identified in a majority of fibromyalgia patients.
The rheumatologist will do a physical exam that may be quite unpleasant as they are trying to recreate pain in specific areas of your body: your knees, your hips, your shoulders, your collarbone, etc.
They will also ask you questions about your lifestyle to see if the symptoms could be due to overworking certain areas of your body.
The rheumatologist will try to determine the debilitating effect of fibromyalgia on your “envelope” (ie the parts of your body you can access from the outside).
Now if you see a neurologist, he may be looking for the neurological aspect of fibromyalgia. I know, “Duh!” But what does it mean exactly? They will ask you to perform certain simple actions you are called to perform every day without even thinking about it.
For example, they may ask you to balance on one foot, try to push their hand up while they apple downward motion, or ask you to lift an object of more or less weight. Those exercises are intended to observe how your brain processes information, and whether or not it is sending appropriate signals to your body.
The neurologist will try to determine the level at which your brain feels exterior signals and the response your brain directs your body to have. The neurologist wants to know how fibromyalgia impairs your “command center” (ie your brain and nervous system).
6- How do I explain my symptoms to the doctor?
A normal worry when you think you may have fibromyalgia is how to explain your symptoms to your doctor.
First of all, I want to tell you that while there are symptoms that are similar from one person to the other, there is no definite and accurate list. Sure, you’ll be told that you need to have so many trigger points in this and that spots.
To be honest with you, it’s a bunch of blah blah
There. I said it.
That whole symptoms thing is more like a guideline. Now some doctors are more “old school” than others and they may want to adhere to the official criteria to the letter. That’s fine.
But you need to know that just because you don’t fit 100% in the mold the medical world has decided was the only one for fibromyalgia, that doesn’t mean you’re crazy. That does not mean it’s all in your head. That does not mean you are imagining symptoms.
Now that we have established that the symptoms we commonly think about when we refer to fibromyalgia are not exclusive, let’s talk about how to explain those symptoms to your doctor.
- It would be a good idea to start making a list of what you think is related to fibromyalgia.
- No matter how insignificant you think something might be, still write it down. You would be surprised how many weird and invisible symptoms of fibromyalgia there are.
- Take note of when your symptoms show up. Is it after you’ve walked all through the mall? Is it when it’s raining? Is it when you first get up in the morning?
- Keeping a journal of your activities will be helpful. Not only will it show your doctor what precedes a bad Fibro Day, but it will also help you see if there is a relationship between what you do and eat, and a symptom flare-up.
- Don’t be shy. You won’t sound silly, even if it sounds rather impossible to lost people to have traveling pain that comes and goes. Your doctor is a doctor. He or she knows.
- Even if you lack the words to describe how you feel, make your concerns known. Nobody expects you to speak in perfect medical terms. Maybe your symptoms remind you of another time in your life when you may have felt the same way. Go ahead and describe that time to your doctor. They will welcome the information.
- You are not alone. Your doctor knows what fibromyalgia is. And if that doctor of yours is stuck in the mid-1800s, then find a doctor who is more abreast of current medical research. There is no reason why you should suffer simply because your doctor refuses to believe in science.
7- What is that fibromyalgia test I heard about?
You may or may not know about a test that hit the US market in 2012. It is supposedly a test that can detect whether or not you have fibromyalgia.
I know. I was surprised too. So I looked into it.
It is called the FM/a test. According to their website, “The FM/a® Test is a multi-biomarker-based test, which analyzes your immune system’s white blood cell’s chemokine and cytokine patterns.
Patients with fibromyalgia have an irregular pattern regarding these proteins. FM/a® Test results are based upon a 1-100 scoring system. The test is positive and confirms the diagnosis of fibromyalgia if the test result is above 50.0. The sensitivity for the FM/a® Test is 93%.”
In plain English, it looks at some specific proteins in your system to determine whether or not you have an irregular pattern. If you do, then it is highly likely that you have fibromyalgia. Amazing, no?
It was developed by the medical research team at the College of Medicine of the University of Illinois – Chicago. It is now commercialized by a company based in California called EpiGenetics. They, of course, currently have the monopoly on the blood test.
So why is it that we barely know anything about this test? Why is it that we are still pushing on trigger points and asking all kinds of unbelievable questions to diagnose fibromyalgia?
Why is it that there is still so much skepticism, including in parts of the medical community, regarding the legitimacy of fibromyalgia?
For starters, its price tag is rather steep: $740+. This is definitely a problem for most Fibro Warriors out there. In the five years, the test has been available in the US, more and more insurance companies are accepting to reimburse part of the cost. Still, it’s a bit pricey.
Very recently, the United States Administration has agreed to cover the cost of the test for US Veterans. The acceptance of the test as being valid by the US Government is a huge step in the right direction. It validates the fact that fibromyalgia is finally being understood as a legitimate condition.
However, the Mayo Clinic, located in Rochester MN, still does not recognize any valid test for fibromyalgia. The Mayo Clinic is often cited as an eminent medical resource.
Its research teams, state of the art facilities and top gun medical professional are renowned the world over for being the crème de la crème. Therefore the question remains regarding the FM/a.
Professor Fred Wolfe (a GIANT in the fibromyalgia research world!) posted an article back in 2013 titled “Junk Science – Junk Ethics” explaining why the FM/a test was not what it claimed to be, namely a revolution in the Fibro World.
In his piece, Professor Wolfe explains the following: “In March 2013, EpicGenetics started selling the ‘test’ for $744 to physicians and directly to patients. […]There was a lot of money involved for the company and Dr. Gillis, and it is almost certain that the reviewers would have taken note of this fact [editor’s note: the fact that De Gillis declared he had no competition g interests while in fact he was at the helm of the company directly selling the product].[…] Cytokine levels are abnormal in many physical and mental conditions. The authors studied none of those conditions. They provided almost no information about patient selection or many other vital data for a comparison trial. The CONSORT statement on publishing trials offers guidelines on the reporting of data.
They didn’t follow these guidelines. As a clinical study, it was very poorly planned and carried out. As a pathology report, it might pass. But the data did not in any way addresses the validity and reliability of their ‘test’ to diagnose fibromyalgia.
I conclude that they (EpicGenetics and Dr. Gillis) were trying to fool people into buying the scientifically unproven $744 test.
[…]Want to diagnose fibromyalgia? Talk to the patient. In less time than it takes to get the blood drawn you can have the diagnosis (free!).”
Who said the medical research world was all prim and proper? There is some real animosity between Wolfe and Gillis, both long-time players in the field, with some documented history of strong disagreements.
To state it plainly, Fred Wolfe is saying that Gillis provided some sort of “irrefutable proof” that the test was the new sliced bread, citing some medical research studies that were in fact not carried on ethically. To boot, Gillis vouched for a product from which he stood to greatly profit!
In his article, Wolfe pointed out that many medical conditions other than fibromyalgia could have the same markers as those observed with the FM/a test.
So here we stand, with no objective guidance regarding a test marketed by one expert, and denigrated by his rival.
My advice in all that? Ask your healthcare professional. They will be the best person to tell you whether or not YOU can benefit from the test.
8- Which symptoms could be mistaken for other conditions, delaying your fibromyalgia diagnosis.
Professor Wolfe said that many conditions could be showing the types of protein abnormalities seen in fibromyalgia patients. But exactly what other conditions could be mistaken for fibromyalgia, and vice versa?
There are undoubtedly many medical conditions that would show symptoms similar to those seen in Fibro Warriors. The list below is not exhaustive. It is not exclusive. It is only meant to be a guideline, or maybe more a way to get your research started.
Fibromyalgia symptoms can be shared with the following conditions:
- Multiple Sclerosis
- Chronic Fatigue Syndrome
- Polymyalgia Rheumatica
- Rheumatoid Arthritis
- Obstructive Sleep Apnea
- Lyme Disease
- Irritable Bowel Syndrome
- Temporomandibular Joint Syndrome or TMJ
- Interstitial Cystitis or Painful Bladder Syndrome
- Restless Leg Syndrome
- Migraine Headaches
- Transient Ischemic Attacks or Mini-Strokes
As you can plainly see, eliminating other conditions while diagnosing fibromyalgia is no walk in the park. That’s also why you probably should not try to self-diagnose fibromyalgia.
Given the list of other possible ailments presenting symptoms similar to Fibromyalgia, there is no good reason you should not take that trip to the doctor’s and make sure there is nothing else going on.
Keep in mind this list is NOT exhaustive. That means there are a hundred more medical condition more or less obscure that would fit in with symptoms identical to fibromyalgia symptoms.
Don’t play with your health. It’s not worth it.
9- Can I be sure I have fibromyalgia?
Unfortunately, no. Even if you think the protein test discussed above can provide you with as accurate a test as possible, its makers claim it is accurate at 93%. That’s pretty good, but that’s not 100%.
On your search for a fibromyalgia diagnosis, you will have many hurdles to jump. Some of the biggest obstacles will be the medical conditions that mimic fibromyalgia. Some of those conditions are benign compared to fibromyalgia. But some others are much worse, believe it or not.
As a result, the diagnosis will be confirmed through a process of elimination. Sometimes, finding it what it is not tells you as much. if not more, than trying to figure out what it is.
10- What if I am positive I have fibromyalgia, but no one believes me?
There is absolutely NO REASON you should have to be subjected to constant skepticism. Sure, your family and your friends may have a hard time wrapping their heads around the concept of fibromyalgia. But you should at least be able to count on the support of your healthcare professional!
If you encounter a doctor or a physician who does not believe that you could have fibromyalgia, it may be time to seek a second opinion. Your doctor may be right: you could have instead of fibromyalgia one of the many conditions that look like fibromyalgia. But if that is the case, then you should be able to get an answer from your doctor as to what is troubling your health.
No matter what, you have the right to ask questions and to get answers.
There is a lot of information to take in and process. There are support groups online that can truly help you overcome the obstacles Fibromyalgia will throw in your path. You can get more information at www.thefibrowarriors.com.
You can also join our Facebook support group, The Fibro Warriors. You will enter a judgment-free zone. People exchange ideas on how to cope with fibromyalgia, how to explain it to theta, but also good old conversation about anything and everything. See, as Fibro Warriors, every aspect of our life is impacted by fibromyalgia. Something as simple as getting a haircut can become a challenge.
Once you join a positive support group, everyone will have at some point encountered whatever it is that is stumping you. And in a beautiful and selfless environment like our online community, you will feel valued, heard and understood.
I urge to not get discouraged. The process can be long and drawn out while other conditions are ruled out. Sadly, it is not unusual for Fibro Warriors to not be diagnosed for months, if not years.
The journey is a long one, especially considering there currently is no cure for fibromyalgia.
But the journey is worth it. Keep asking questions. Keep advocating for your self. You know your body better than anyone else on this Earth. Trust your instincts if it feels like something is wrong, then pursue your search, no matter what you’re told. There will be naysayers. There will be cynical people.
But you know what? You’re better than this. You’re a Warrior after all!
Keep up the good fight, Fellow Fibro Warriors! You are amazing!