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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

How I Know Guaifenesin Works–Experience with Children and Input from Bodyworkers

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One of my patients, Libby H., contacted me last week to ask for a guaifenesin refill. When I asked her how she was doing, she said, “I am doing fantastic!! It is truly amazing, I have a life again….I feel so good most of the time that I forget I have FMS. I am so grateful.” I called in the prescription and then contacted her to let her know the medication was ready. She then asked me, “As an MD do you completely believe guaifenesin is the answer for Fibromyalgia Syndrome or do you think it could be something in our minds that reverses it because we finally have hope? I know I see the results but every other doctor I talk to except Dr. St. Amand and you just don’t believe. It seems so bizarre to me that the medical society buys into one explanation that benefits Lyrica yet won’t even consider guaifenesin.”

The following is a summary of what I said to her:

Libby, you and I know guaifenesin reverses the symptoms of fibromyalgia because we can personally feel the difference in our bodies since we started the medication. I have not seen any evidence that anything “in our mind reverses” which allows guaifenesin to work. My patients who are improving on the guaifenesin protocol say the same thing.

One of the most compelling examples of how guaifenesin works without the mind being involved is with children. I care for a number of children who have fibromyalgia and they are too young to focus much on it (my youngest patient is a 5 year old). When they start guaifenesin their symptoms lessen very quickly (usually within 6 weeks). These young patients are not participating in any activity that would cause their mind to “reverse.” They are not seeing a therapist, they do not meditate or do any kind of mind-body therapies. I can feel the lessening of spasm in their muscles, tendons and ligaments that I feel with my older patients. They take guaifenesin, go about their normal kid activities, and start to feel better. One of my very young patients has stopped taking her guaifenesin (no matter how her parents disguise the granules in pudding, juice, etc she just won’t take it because she does not like the taste) and her mother has been heartbroken to see her little girl’s fibromyalgia symptoms return one by one. Luckily she is my only patient who has refused to take guaifenesin.

Body workers (such as Chiropractors, Osteopaths, Massage Therapists and Feldenkrais Practitioners) can feel the difference when patients start to improve on the guaifenesin protocol. My patients tell me that after approximately 9 months on guaifenesin their body workers comment that their bodies are more easily aligned and their muscles are more flexible and have less spasm.

Kaz Shibao, GCFP, COMT, is a certified Feldenkrais Practitioner and Orthopedic Massage Therapist at the California Pacific Medical Center’s Institute for Health and Healing in San Francisco. His work is respected by physicians and well loved by his patients (just look at his reviews on Yelp). He called me last week and said “I now KNOW that the guaifenesin protocol works. I started seeing one of your patients before she started the protocol and now that she is one year into the protocol her body feels completely different to me! She is so much better.” Indeed our mutual patient is feeling much better. She has less pain and more energy. She is well on her way to reversing her symptoms of fibromyalgia.

This is more objective evidence that the guaifenesin protocol can produce positive change in the musculoskeletal system.

Stay tuned for my next blog–my take on why many physicians are so negative about the guaifenesin protocol.

Can’t See The Forest For The Trees

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What I actually wrote to the editor:

Dear Dr. McMillan:

Thank you so much for including the article “Managing Abdominal Pain in Children” by Osama Almadhoun MD in the March issue of “Contemporary Pediatrics.” As a physician with fibromyalgia, the mother of a teenager with Juvenile Primary Pediatric Syndrome, and a fibromyalgia consultant for children and adults, I was interested in the Rome III diagnostic criteria for Childhood Functional Abdominal Pain Syndrome. Could we be missing pediatric fibromyalgia patients here? I understand that the term “functional” abdominal pain is used to describe abdominal pain where no pathologic condition can be found. I also understand that pediatric fibromyalgia may be difficult for some practitioners to diagnose. But when the criteria for “functional abdominal pain syndrome” includes “some loss of daily functioning and additional somatic complaints such as headache, limb pain and difficulty sleeping,” I felt right at home. These symptoms so accurately describe many of the characteristics of Juvenile Primary Fibromyalgia. It is hard for me to understand how a child with long standing limb pain, headache, trouble sleeping and abdominal pain could not have an identifiable syndrome.

Sadly, many of my patients have bounced from doctor to doctor until their symptoms are recognized as Juvenile Primary Fibromyalgia. Many of them have adult relatives who have suffered the same fate. I hope that soon more members of the pediatric medical community will step up and make the diagnosis earlier so these children can start receiving treatment.

Sincerely,

Melissa Congdon MD FAAP, Corte Madera, CA 94925

What I wanted to write:

Dear Dr. McMillian:

Am I the only doctor in the country who read “Managing Abdominal Pain in Children” and thought there might be a big problem? How could MOST of the children with chronic abdominal pain that causes some “loss of daily functioning” and have “additional problems such as headache, limb pain or difficulty sleeping” have a “benign problem?” Limb pain? And loss of daily functioning for a prolonged amount of time?  These symptoms are not benign in the life of the affected child and their families. Some of these children may have Juvenile Pediatric Fibromyalgia, but many pediatric specialists are hesitant to make this diagnosis in children as not to “label” them. One of the fellows in the Pediatric Rheumatology Department at a major university hospital in my area told me they NEVER make the diagnosis of pediatric fibromyalgia in children–they call it a “pain amplification syndrome.” As a physician with fibromyalgia, a parent of a teen with fibromyalgia and a fibromyalgia consultant for children and adults–believe me–this delay in diagnosis is not doing the child or family any favors.

Children with fibromyalgia respond very well to treatment. The earlier they are diagnosed the more quickly they will respond to treatment, giving them a better chance to be pain free and experience the joys of childhood! Juvenile Primary Fibromyalgia is a REAL syndrome and should be treated as such. Please use your excellent journal as a forum for specialists to share their knowledge of pediatric fibromyalgia so that we all can benefit.

Sincerely,

Melissa Congdon MD FAAP, Corte Madera, CA 94925

 

Reflections on International Women’s Day 2012

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Today is International Women’s Day, celebrated in different ways throughout the world. I am a woman with fibromyalgia, and treat many women (young and old) with fibromyalgia. Today I would like to show my appreciation to all of the women with fibromyalgia who have come before me. Even though many of us with fibromyalgia battle the symptoms of the illness, there is much more known about fibromyalgia and its treatment today than 20 years ago. When I ask my new patients about a possible family history of fibromyalgia, I often hear about a mother who could not achieve her dreams due to constant pain, or a grandmother with such bad “rheumatism” that she was bedridden. Sometimes I hear about extreme fatigue, and yes, sometimes I hear about the symptoms of male relatives too! These relatives had very few treatment options and often had to suffer in silence.

So to all the women with fibromyalgia who have come before me–thank you for doing the best you could. I know your greatest hope is my greatest hope–that your daughters and granddaughters will not have to suffer as you did. Today there is help for those of us with fibromyalgia, and I believe there will be even more help in the years to come.

Good “News”

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As I mentioned in an earlier blog entry, I love to watch San Francisco Giants baseball as a way to relax in the evenings. During the off-season I go through withdrawal, often trolling TV channels in search of something that holds my interest.

One evening a month ago, I turned on the Channel 5 local news (a CBS affiliate), and sat bolt upright. Dr. Kim Mulvihill was doing a Health Watch segment on a study about the success of a vagus nerve stimulation device that was tested on 14 women who had “treatment resistant” fibromyalgia pain.

Whoa, fibromyalgia study results being broadcast on the local evening news? I LOVE this! The study, published in the journal “Pain Medicine” in August, described an 8-month study on 11 women who had a vagus nerve stimulation device implanted to treat their severe pain, which did not respond to “conventional” pharmacological treatments. Even though the device has some adverse effects, it may be a “useful addition” to managing fibromyalgia patients with intractable pain.

After Dr. Mulvihill described the results of the study the anchorman said,”There are a lot of people and some doctors who don’t really think it is real; that there isn’t such a thing as fibromyalgia.”

Dr. Mulvihill said, “It was a very controversial diagnosis in the 1990s. That has changed a lot now. Today most medical groups acknowledge it exists and are trying to find treatments to help these patients–it can be very debilitating. But you are right, there are still some physicians who do not recognize this as a true disease.”

Then anchorman ended by saying, “all right, hopefully they get help.”

I know this surgical procedure is not a cure for fibromyalgia, nor is it appropriate for most of us with fibromyalgia, even those of us in severe pain. But the fact that the National Institute of Health funded a study on fibromyalgia treatment, the fact that Gundren Lange PhD thought the condition important enough to conduct the study, and the fact that CBS Channel 5 (and specifically Kim Mulvihill) cared enough to cover the story and help set the record straight on fibromyalgia–makes my heart sing.

Hopefully Dr. Mulvihill’s segment will help a few of the doubting physicians rethink their position on fibromyalgia. After all, no doctor wants to be known as being behind the times. These physicians dont’ want to be thought of as holding the outdated notion that fibromyalgia doesn’t exist, and that they are not interested in helping treat their patients who have the syndrome.

I am going to send Dr. Mulvihill a thank you email right now–from all 6 million of us.