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How I can diagnose fibromyalgia with 100% accuracy

August 12, 2018 By Melissa Congdon, MD, FAAP

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.

Filed Under: Diagnosis, Fibromyalgia, The Medical Community, Uncategorized Tagged With: chronic pain, diagnosis, Dr. St. Amand, education, fibromyalgia, Fibromyalgia is real, missing the diagnosis

Some people don’t believe Fibromyalgia is real? Seriously? Take a look at the research

May 10, 2018 By Melissa Congdon, MD, FAAP

Important FM summary paper in the Journal of the American Medical Association:​

http://emerge.org.au/wp-content/uploads/2014/12/Clauw-D.-J.-Fibromyalgia-a-clinical-review.-JAMA-J.-Am.-Med.-Assoc.-2014-31115-1547-1555.pdf

The Science of Fibromyalgia:

https://www.mayoclinicproceedings.org/article/S0025-6196(11)65223-3/pdf

fMRI shows distinct reactions to painful stimuli:https://www.ncbi.nlm.nih.gov/pubmed/27583567

People with FM have higher glutamate levels in the brain:https://www.ncbi.nlm.nih.gov/pubmed/18311814

People with fibromyalgia feel pressure as pain:https://www.ncbi.nlm.nih.gov/pubmed/12115241

CSF levels of 3 neurotransmitters (serotonin, norepinephrine, and tryptophan) were found to be lower in people with FM:​https://onlinelibrary.wiley.com/doi/abs/10.1002/art.1780350509

MRI SPECT scans in people with fibromyalgia show decreased blood flow in the thalamus:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4337836/

Strong genetic link in fibromyalgia:​https://www.ncbi.nlm.nih.gov/pubmed/23280346

Non brain unique physical findings in people with fibromyalgia:

  1. Link between fibromyalgia and irritable bowel syndrome:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1754959/pdf/v063p00450.pdf
  2. Altered intestinal permeability in fibromyalgia: https://www.ncbi.nlm.nih.gov/pubmed/18540025
  3. Lower amount of intramuscular collagen in people with fibromyalgia:https://academic.oup.com/rheumatology/article/43/1/27/1778588
  4. Trans capillary permeability is reduced in fibromyalgia:https://www.ncbi.nlm.nih.gov/pubmed/7966078/
  5. During exercise muscle oxygen extraction was less in FM patients and the muscle recovery time (how long it took oxygen to normalize in the muscle) took significantly longer compared to people without fibromyalgia:https://www.medscape.com/viewarticle/804318?src=wnl_edit_tpal

City of Hope Research Studies:

  1. 2008 paper ****this study showed that guaifenesin has an effect on immune system proteins (chemokines and cytokine):http://www.fibromyalgiatreatment.com/uploads/2/6/5/7/26574962/city_of_hope_reprint.pdfAnd Dr. St. Amand’s interpretation of the study:http://www.fibromyalgiatreatment.com/uploads/2/6/5/7/26574962/dr_st_amands_explanation_of_city_of_hope_study.pdf
  2. 2010 paper:http://www.fibromyalgiatreatment.com/uploads/2/6/5/7/26574962/fms-plosone.pdf
  3. 2013 paper:http://www.fibromyalgiatreatment.com/uploads/2/6/5/7/26574962/fengetal2013.pdf

Presenting a donation for City of Hope Fibromyalgia Research:

Filed Under: Diagnosis, Fibromyalgia, Pain management, Symptoms Tagged With: City of Hope, diagnosis, Dr. St. Amand, education, fibromyalgia, Fibromyalgia Studies, Journal of the American Medical Association, supporting scientific data

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

September 25, 2017 By Melissa Congdon, MD, FAAP

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

@LadyGaga Letter to Lady Gaga–What You Need to Know about Fibromyalgia from a Doctor with Fibromyalgia – https://t.co/tBDCoPVKhX

— Melissa Congdon MD (@MelissCongdonMD) September 26, 2017

Filed Under: Chronic Fatigue Syndrome, Diagnosis, Fibromyalgia, Health maintentance, Medication, Pain management, Symptoms, The Medical Community Tagged With: chronic pain, diagnosis, family and friend support, fibromyalgia, guaifenesin, Lady Gaga, misperceptions, missing the diagnosis

Increased Incidence of Obstructive Sleep Apnea in Fibromyalgia Patients

November 2, 2015 By Melissa Congdon, MD, FAAP

IMG_2753As a person with fibromyalgia and a physician treating fibromyalgia patients I am well aware of the disrupted sleep pattern most of us have and attuned to this topic. The results of a 2014 study in the Journal of Clinical Neurophysiology surprised me and upon review have changed my patient recommendations.

 

Dr. Victor Rosenfeld and his team analyzed 385 people (133 with fibromyalgia) by conducting comprehensive overnight sleep studies. The team found that 45% of people with fibromyalgia in the study had obstructive sleep apnea (OSA) – twice the rate of obstructive sleep apnea (OSA) found in the general population. Many of the people with fibromyalgia found to have OSA did not have the usual risk factors of obesity or snoring. Simply having fibromyalgia was a risk factor for obstructive sleep apnea.

 

After reviewing and considering this study, I began to recommend that all my new fibromyalgia patients 30 years of age and over ask their primary care doctors to order an overnight sleep study. A couple of my patients noted that their primary care physicians grumbled while writing the prescription because they were not used to thinking that OSA could occur in young fibromyalgics without the typical risk factors of obesity or snoring, but it turns out that 50% of my patients do indeed have obstructive sleep apnea. I am now talking to my existing patients 30 years of age and older about the importance of having an up to date sleep study.

 

Why is it important to treat OSA? The Mayo Clinic notes, “Sudden drops in blood oxygen levels that occur during sleep apnea increase blood pressure and strain the cardiovascular system. The more severe the obstructive sleep apnea the greater the risk of coronary artery disease, heart attack, heart failure (perhaps men only) and stroke.” Some fibromyalgia patients with OSA who start getting adequate oxygen during sleep note they have less fatigue, mental fog and pain during the day.

 

Much has changed in the past few years: overnight sleep study centers are more comfortable and many patients find they often sleep tolerably well during the study. No longer is a huge uncomfortable oxygen mask the only treatment for OSA. An overnight sleep study can determine if you have sleep disordered breathing treatable by oral appliances, nighttime oxygen delivery or other methods. If you have fibromyalgia you are at higher risk for OSA and properly treating it could improve your health and the way you feel.

 

This article was published in the April 2015 edition of the Fibromyalgia Treatment Forum: http://www.fibromyalgiatreatment.com/newsletter.html

 

Filed Under: Fibromyalgia, Health maintentance, Pain management, The Medical Community, Uncategorized Tagged With: chronic pain, diagnosis, Fatigue, fibromyalgia, Obstructive Sleep Apnea

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

February 23, 2015 By Melissa Congdon, MD, FAAP

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.

Filed Under: Fibromyalgia, Fibromyalgia Film, Guaifenesin, Medication, Symptoms Tagged With: chronic pain, diagnosis, fibromyalgia, fibromyalgia film, Fibromyalgia is real, missing the diagnosis, pediatric fibromyalgia

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