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Letter to Lady Gaga–What You Need to Know about Fibromyalgia from a Doctor with Fibromyalgia

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Dear Lady Gaga,

First of all, let me say how sorry I am that you are experiencing severe chronic pain. I have fibromyalgia and am a doctor for children and adults with fibromyalgia, so I know what it feels like. My fatigue and pain was so severe that I had to retire from medicine for a while until I found treatments that helped me significantly. Here is what I think you should know:

  1. You WERE born this way! There is a strong genetic component to fibromyalgia. Sure, the intense physical nature of your work puts extra stress on your body, but you did not CAUSE your fibromyalgia. It is my belief that one must have the underlying genetic predisposition to fibromyalgia–otherwise, EVERY superstar entertainer would have fibromyalgia (even Madonna!).
  2. Fibromyalgia is NOT all in your head–sure, there is evidence that some of our pain is due to “central sensitization,” where our brain amplifies the pain, but fibromyalgia is much more than that. Fibromyalgia can affect every organ in your body–you can have intestinal symptoms, brain symptoms (anxiety, panic attacks, dizziness), skin symptoms, etc. Your physical exam is NOT normal. If your doctors examined you carefully (and I am not talking about the inaccurate tender point exam here), they would find that you have a pattern of muscle spasm and swollen muscles, tendons, and ligaments throughout your body. These press on nerves, causing pain.
  3. YOU are in charge of your body and the treatments you choose–there are SO MANY treatments out there, you will know with time what works best for you. (For me, it has been the guaifenesin protocol, acupuncture, exercise, myofascial release, and my spiritual practice.) Often times body work and trigger point injections are only a temporary fix, but a temporary fix while you are searching for treatment with more long-lasting benefits is fine! Aim to feel GREAT, not just good. In fact, this is a good question to ask fibromyalgia doctors: “What percentage of your patients are having some great days after they follow your treatment protocol?” Oh–I almost forgot–everyone with fibromyalgia develops osteoarthritis over time and the guaifenesin protocol STOPS the progression of osteoarthritis–something that might be super important to you with your hip issues and the intense physical nature of your performances.
  4. I can tell by your Twitter feed that you have already encountered the people who believe that fibromyalgia is not real or that we are just being overdramatic (and since 75% of us are women, we’re up against gender stereotypes as well). You and I know this couldn’t be farther from the truth. We just want to be able to do our jobs and pursue our passion without chronic debilitating pain. Your true friends will stick with you, plus there some seriously awesome men and women with fibromyalgia who will support you in your quest to return to good health. You have already done the first most important thing: OWNING your illness.

THANK YOU for your amazing documentary! Fibromyalgia is so common, but because it is an “invisible” illness (and probably because it affects mostly women), there is hardly any money going into research and support. I made a little documentary also! It describes my story and my patients’ stories. Check it out at this link. If you want help from a strong independent fibromyalgia consultant, give me a call.

Melissa Congdon MD 415-927-0600

The Sweet Spot: I have Fibromyalgia and I feel wonderful

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I had just finished seeing my last fibromyalgia patient of the morning, and I was getting chicken salad out of my lunch bag and had time to take a deep breath and check in with myself. Ahh, my body felt great–my muscles moved easily and I didn’t feel pain anywhere. I had plenty of energy, my mind was clear, and looked forward to the afternoon and the weekend.

I had hit the “sweet spot,” the spot where my system was in balance. How did I, someone with fibromyalgia, achieve this balance? I try to practice what I preach: in order to have the best chance of recovery from fibromyalgia symptoms I find that I and my patients need to:

1. eat foods that help you feel well–we are what we eat, it is that simple.

2. get consistent aerobic exercise–we all need at least 20 minutes of aerobic exercise 4 times a week to feel well. Put comfortable shoes on and get moving. You will build new mitochondria over time which will give you more energy and help you feel better.

3. clear well on the guaifenesin protocol–this treatment has proved so successful for me and many of my patients.

Do I feel wonderful all day every day? No, but I feel a heck of a lot better now than I felt 7 years ago when I was first diagnosed. Do your best to follow the 3 guidelines to give yourself the best chance to hit your sweet spot. This is my wish for you.

 

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

Disbelief

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I’m back to blogging after taking month or so off preparing hour long talks on fibromyalgia and chronic fatigue syndrome for doctor groups at our local hospital (one talk for the pediatricians, one talk for the Ob-Gyns). The talks took alot alot alot of preparation on my part (I wanted what I said to be compelling and interesting). I the doctors who attended were very interested in learning how they can more easily recognize a patient with FM/CFS. And after both talks I was approached by doctors who knew they themselves had the illness, but had never done anything about it. This gave me the opportunity to let them know I could care for them, with education and treatment options.

What I don’t understand are doctors that see FM/CFS and still think it is does not exist as a syndrome, and that the symptoms are all in our heads. The hard scientific data is compelling (I will post that next), and you would think our symptoms would be compelling as well. Do they think we are all so crazy we make our symptoms up? I know that anxiety and depression can be part of the syndrome complex, but they are with many other syndromes and diseases. Besides, if I was going to “make up” symptoms, I think I could be A LOT more creative–the common symptoms of fibromyalgia are no fun.

I know one of the stumbling blocks is the lack of a blood test to diagnose fibromyalgia. Dr. Charles Argoff, Neurologist at Albany Medical College and Director of the Comprehensive Pain Center says “clinicians should be accustomed to being faced with managing conditions for which absolute knowledge regarding the conditions and there etiology and pathophysiology is not yet known. In fact, this is true for most medical conditions we encounter including many non pain conditions such as hypertension, various cancers, and diabetes.”

Those of us with fibromyalgia and CFS need to say strong. I feel confident that in time our syndrome will be recognized as a disease, and we will start to get the respect we deserve. Until then, we need to stay organized and find a compassionate and informed doctor.

A Big Shout Out

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I am currently preparing a talk on Fibromyalgia and Chronic Fatigue Syndrome to be presented at Pediatric Grand Rounds (a weekly meeting of all interested pediatrics and other health professionals) at our local hospital. I am starting with basic information about fibromyalgia; how our brain processes pain differently than others, how prevalent it is, what to look for during office visits, and common treatments and recovery rates.

Putting all of this together has made me realize how poorly understood the illness really is. I only knew the tip of the iceberg about the syndrome until I was diagnosed and threw my heart and soul into learning all I could about every aspect of fibromyalgia. Now that I know tons more, I have learned that there is tons more we need to know to understand the syndrome.

So I would like to give a big shout out of THANKS! to my family and friends who continue to support me through this illness, even though I know that they probably don’t understand more than the tip of the iceberg. But the agreeing to provide seemingly endless back rubs, the interest and concern, as well as just being there has meant the world to me. I am so grateful, and wish that all patients with a chronic illness had such great support.

All of you lift my spirits and make it easier to deal with this complicated long term illness. If I am feeling better, I have more to give to my patients.

Thanks guys!  XOXO