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How I can diagnose fibromyalgia with 100% accuracy

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Does this sound like an outlandish claim? It is not. I was diagnosed with fibromyalgia 10 years ago by fibromyalgia expert Dr. R. Paul St. Amand. He uses a method of palpation which he calls “body mapping,” where he carefully uses his finger pads to find any swollen areas of muscles, tendons, and ligaments in the body, and records his findings on a “body map.” These areas need not be tender (super important because when the tender point exam was evaluated in 2010 it was found to be inaccurate — missing over 20% of people with known fibromyalgia — plus the tender point exam does not take into account any of the non-pain symptoms of fibromyalgia, such as non restorative sleep, possible fatigue, headaches, dizziness, etc. Turns out the tender point exam was never meant to be used in a clinical setting anyway, it was meant to be a research tool). Dr. St. Amand has found that 100% of people with fibromyalgia have swollen areas of muscles, tendons, and ligaments in their left anterior thigh (these swollen areas are usually very small and don’t often hurt, so most people with fibromyalgia aren’t aware of their presence). I trained with Dr. St. Amand to learn how to do the mapping exam.

So why is this important? Firstly, it allows me to quickly and accurately diagnose fibromyalgia during the first office visit. The other available options (other than the tender point exam) are the American College of Rheumatology 2010 criteria–but that requires physicians to “interview patients and determine the severity of fatigue, sleep, and cognitive problems, and the overall degree of somatic symptom reporting. It seems certain that physicians will differ in their conscientiousness in making such assessments and their interpretation of the severity of patient complaints,” https://onlinelibrary.wiley.com/doi/full/10.1002/art.38908, and the FM/a blood test may be 94% accurate, but may not be covered by insurance (it retails for $936) and some physicians question whether people with Lyme disease (or other conditions) may test erroneously test positive for fibromyalgia. For the cost of an office visit, my patients get an accurate diagnosis and a personalized treatment plan.

Secondly it allows me to identify people who have been misdiagnosed with fibromyalgia. If I see someone in my office for a fibromyalgia evaluation and they do not have anterior thigh nodules they DO NOT HAVE FIBROMYALGIA. Later, these patients were accurately diagnosed with conditions such as celiac disease, Ehlers-Danlos or other connective tissue disease, Lyme disease, actively replicating virus in their system (such as EBV) which gave them symptoms of chronic widespread pain.

I am so thankful to Dr. St. Amand for teaching me how to do the mapping exam. He and I have trained/continue to train healthcare professionals how to map. Wouldn’t it be wonderful if more healthcare professionals were interested in learning how to map? Then they could accurately and quickly diagnose fibromyalgia (for the cost of an office visit) and understand that the physical exam in people with fibromyalgia is NOT NORMAL, but has a collection of swollen muscles, tendons, and ligaments. Even more proof that fibromyalgia is a real syndrome.

The Making of “Fibromyalgia: Getting Our Lives Back,” Behind the Scenes Part 1: A Surprise for the Doctor

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IMG_1258Even though I had a vision in my head about what I wanted the fibromyalgia film be I had no idea how to get there. How could I help my patients communicate what they had been though? During a patient appointment I ask pointed direct questions (what is the severity of your pain? How is your energy? Has your fibrofog eased at all?) These questions are designed to give me the information needed to quickly and accurately assess how the patient is doing before I exam them and then make an assessment and plan. But making a good movie is different than structuring a good office visit. Luckily filmmaker Tylor Norwood had it all figured out.

“Ask your patients to tell you their story” Tylor said. “Sit in a chair across from them and ask them and listen. I will film it all.” It was that simple but that profound. This was not a situation where the doctor controlled the visit, this was the patient’s chance to describe what was important in their healing journey: to reveal the struggles to get diagnosed, the disappointment when medications and treatments failed to work, and the joy when the pain and fatigue started to ease on the guaifenesin protocol. I had known most of these patients for over a year and yet I learned things about their journeys that I had never known–important and profound things. All I had to do was listen.

Fibromyalgia is a Real Disease: Discussion of a New Blood Test To Diagnose Fibromyalgia

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I think I speak for most fibromyalgia patients when I say we yearn for physicians and the general public to realize what we have known all along–that fibromyalgia is a real disease. We are not “just tired” or “just stressed out and just need to learn how to relax.” Our symptoms of pain, fatigue and non-restorative sleep (and many others) are not imagined. A definitive blood test would help silence the skeptics and legitimize our condition.

For fibromyalgia to be recognized as a disease (and not just a collection of symptoms) not only does there need to be an “identifiable group of signs and symptoms” attributable to fibromyalgia but “consistent anatomic alterations” must be found.*

Does the answer lie within our immune system? Years ago researchers began to hypothesize that certain immune system proteins (chemokines and cytokines) might be affected in people with fibromyalgia, so much so that the blood levels of these proteins might be different in their blood. If the pattern is unique in fibromyalgia patients could this be demonstrated in a blood test?

Dr. Paul St. Amand and the researchers at the City of Hope published a study in the Journal of Experimental Biology and Medicine (6/5/2008), entitled “High plasma levels of MCP-1 and eotaxin provide evidence for an immunological basis of fibromyalgia.” MCP-1 and eotaxin are types of cytokines and chemokines. This study found that these two proteins were elevated in the blood of people with fibromyalgia, and when 2 additional cytokines (tumor necrosis factor alpha and interferon gamma) were factored into the testing the diagnostic probability of a person with this blood protein pattern having fibromyalgia rose to somewhere between 70-80%. More information on this study can be found on Dr. St. Amand’s website at www.fibromyalgiatreatment.com. The researchers found that the people in the study who were treated with guaifenesin for at least 3 months (as part of Dr. St. Amand’s guaifenesin protocol) had higher levels of eotaxin than those not treated with guaifenesin. This indicates that guaifenesin has distinct effects on cytokines, an intriguing finding.

This week the March/April 2013 edition of “Fibromyalgia and Chronic Pain LIFE” reported that Dr. Bruce Gillis and the researchers at the University of Illinois at Chicago have developed a commercial blood test to diagnosis fibromyalgia, using differences in the chemokine and cytokine levels in the blood of over 200 people with fibromyalgia as compared to people without the syndrome. This test (called FM/a) is expensive ($774) but is reported to be more than 93% sensitive diagnostically and may actually save patients time and money if they are able to get a definitive diagnosis more quickly (Dr. Gillis notes that on average fibromyalgia patients spend 5 years and thousands of dollars before they receive a fibromyalgia diagnosis). For more information about the test, go to www.thefmtest.com.

So do we break out the champagne? Can we yell, “I told you so!” to all the naysayers? Could the FM/a test be the game changer we have been looking for–a reliable easy to obtain blood test that accurately diagnoses fibromyalgia? Maybe. Time will tell. I am cautiously optimistic. Even though Dr. St. Amand and practitioners trained by him (such as myself) can accurately make the diagnosis of fibromyalgia very quickly using a targeted muscular exam of the anterior thighs (for much less than $774!) we can’t possibly examine everyone in the world who wants to know if they have fibromyalgia. An accurate blood test would be helpful in some instances.

An accurate blood test may make the earlier diagnosis of fibromyalgia a reality. If we look back, most of us with fibromyalgia were having symptoms beginning in childhood or early
adulthood. Wouldn’t it be wonderful if we knew back then that we had fibromyalgia so we could begin treatment? Wouldn’t we love to have back all the days we were too fatigued or in too much pain to work, to attend school, to socialize with friends or to participate in family activities?

When fibromyalgia is recognized as a legitimate disease and diagnosis is made earlier perhaps a wider range of treatment options will then be discussed. Too often doctors hand patients Lyrica samples and do not have the time of the ability to discuss a wider range of treatment options–many of which can be more effective with fewer side effects than Lyrica type drugs (but that is the topic for my NEXT blog post!)

*”What’s the difference between a disease and a syndrome? And how it applies to Fibromyalgia and Chronic Fatigue Syndrome.” by Adrienne Dellwo in About.com Guide Updated March 29, 2012