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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

My thoughts on the JAMA article “Fibromyalgia: A Clinical Review” by Daniel Clauw MD Part 2

August 12, 2014 By Melissa Congdon, MD, FAAP

I love Dr. Clauw’s article. It is a thoughtful and comprehensive review of fibromyalgia. However, I must take issue with the following:

1. Dr. Clauw states that “rarely” it may be “ill advised” to “provide a diagnosis (of fibromyalgia) for a child or adolescent who might use a fibromyalgia diagnosis as a reason to restrict activities.” WHAT? Firstly, I think it is never OK to withhold a diagnosis of fibromyalgia from anyone. Secondly, it is my job as a fibromyalgia consultant to help fibromyalgia patients of ALL AGES understand the importance of consistent aerobic exercise in reducing symptoms, and I would never let a patient’s dislike of exercise keep me from being honest about a diagnosis. I teach all patients how to begin an exercise program so they can minimize pain and maximize the benefits of exercise (see blog on the “exercise envelope” 8/5/14). Dr. Clauw is not the only specialist who feels this way, and sadly many children and adolescents are denied early treatment because of it.

2. Dr. Clauw states; “Usually, the physical exam is unremarkable in patients with fibromyalgia.” Not in my experience. I have examined hundreds of fibromyalgia patients and they all have a distinct pattern of muscle spasm on exam. If a massage therapist ever said “you have the tightest shoulder muscles ever– your muscles feel like rocks,” then you know what I mean. Fibromyalgia expert Dr. R. Paul St. Amand taught me how to carefully examine the muscles, tendons and ligaments of patients to check for muscle spasm and nodules. I do not expect all doctors to travel to see Dr. St. Amand to learn how to more accurately diagnose fibromyalgia (although that would be wonderful), it it is clear to me that fibromyalgia patients have a “remarkable” exam. I am amazed by how many of my new patients tell me that most of their doctors do not even touch them.

3. I am worried that Dr. Clauw’s recommendations for treating “Ms P” will not be successful. I agree that she should limit her to of cyclobenzaprine to 5-10mg at bedtime (although we don’t know if she is already doing this). Dr. Clauw recommends she take her dose of pregabalin at bedtime, which she states she “usually” already does. Next he recommends she add a serotonin norepinephrine reuptake inhibitor. She is already on TEN prescription medications! I would love to see Dr. Clauw discuss a plan to perhaps start a new medication while decreasing and stopping others. Many of my new patients are on a dozen drugs–yes they can reduce symptoms (usually only temporarily), but they have side effects and they can interact with each other! I totally agree with Dr. Clauw that helping “Ms P” understand how to use non-pharmacological therapies to help treat her fibromyalgia is vitally important.

4. One more issue in closing: Dr. Clauw states “effective treatment for fibromyalgia is now possible.” Yes, I believe that with more fibromyalgia research and more excellent articles on fibromyalgia diagnosis and treatment practitioners will better understand fibromyalgia and its effective treatments, but I think it is important to recognize those practitioners who have ALREADY been successfully treating fibromyalgia for years! Many thanks to them–including Dr. Daniel Clauw.

You can access the article here: http://jama.jamanetwork.com/article.aspx?articleid=1860480

 

Filed Under: Diagnosis, Fibromyalgia, Medication, Research, Symptoms, The Medical Community, Uncategorized Tagged With: diagnosis, Dr. Daniel Clauw, education, fibromyalgia, JAMA, Journal of the American Medical Association, pediatric fibromyalgia, symptoms

My Thoughts on the JAMA article: “Fibromyalgia: A Clinical Review” by Daniel Clauw MD Part 1

July 22, 2014 By Melissa Congdon, MD, FAAP

On April 16, 2014 the Journal of the American Medical Association published “Fibromyalgia: A Clinical Review” by Daniel Clauw MD.

What I love about the article:

1. The fact that JAMA published it at all–the last time JAMA published an article on Fibromyalgia was in 2009! The review article notes that fibromyalgia is common (2% to 8% of the population) so it’s about time JAMA published an article about a condition may affect 16 million or so people in the US alone (using 5% of the population).

2. The pain we are feeling is real. Dr. Clauw notes that studies show we “feel more pain than would normally be expected based on the degree of nociceptive input.” That’s right. We feel it. We are not making it up. Just because people without fibromyalgia do not feel pain at lower thresholds doesn’t mean WE  don’t actually feel it. Our pain sensations are real.

3. Don’t withhold the diagnosis from us. Dr. Clauw states “some believe that a label of fibromyalgia may harm patients. However, studies suggest that the opposite is true: a diagnosis of fibromyalgia can provide substantial relief for patients.” Spot on. First we need a diagnosis. Only then we can figure out how to get better.

4. Kids have fibromyalgia too! Dr. Clauw writes; “Fibromyalgia can develop at any age; including childhood.” So true. I treat many children with fibromyalgia, and most of the time they respond to treatment very well and very quickly. Now if only pediatric rheumatologists would get more comfortable making the diagnosis then thousands of children could get treatment sooner, sparing them months to years of worsening symptoms.

5. Your doctor’s toolbox better contain more than just pain meds. Dr. Clauw states; “If clinicians treat fibromyalgia or other chronic pain conditions with drugs alone, they will fail.” So true.

Click here for article.

Stay tuned. Next week my blog will detail what I do NOT like about this article.

Filed Under: Fibromyalgia, Medication, Pain management, Research, The Medical Community, Uncategorized Tagged With: education, fibromyalgia, misperceptions, objective evidence, pain, pediatric fibromyalgia, supporting scientific data

A Guest Blogger (and fibromyalgia patient) comments on the NYTimes “Health For Tomorrow Conference”

June 3, 2014 By Melissa Congdon, MD, FAAP

The New York Times sponsored a medical conference this past Thursday called “Health for Tomorrow,” bringing together prominent leaders in the medical field, including physicians and policymakers. 300 guests were invited from around the country to address “medicine, research, policy, and wellness,” and many of the speakers explored the economic ramifications of the recent Affordable Care Act in California and nationwide.

Curious as to how many young people would be there, imagining that I would be the only one there under 20 (I’m the 19-year-old daughter of a physician, considering a career in medicine later in my life), I was pleasantly surprised to find a wide variety of ages, demographics, and specialties at the conference. The New York Times was not just a sponsor of this event: it lent its name, but also nominated a few excellent moderators and contributors to spur discussion. Elisabeth Rosenthal, trained as a medical doctor but has recently focusing on the cost of health care for the New York Times, moderated many events and skillfully used her experience with the topic to draw out engaging conversations with her guests. Quentin Hardy, the deputy technology editor for the New York Times, also did a great job moderating. He focused on the pieces regarding Big Data, especially how new developments in technology can improve the health field.

Throughout the conference, an action-packed day beginning at 8:30 am and concluding at around 5 pm, what I found most notable was the engagement of the audience. After each talk, two microphones were set out on either side of the stage and audience members were encouraged to come forward and ask questions. Many did, and we were able to hear from an oncology nurse who is also involved in big data development in a tech startup, a specialist in cystic fibrosis, and the CEO of a hospital, to name a few. These guests were equally qualified to be on stage telling us about their work and its application to the future of medicine. They asked questions that applied to their work, but also drew in the audience and engaged us in the larger significance of these issues in the world. Because the audience was able to participate in the discussion, it became a community effort as we were united by the common goal to help healthcare help more people. Unfortunately, the insightful questions took longer than expected, so we were cut off after lunch. Guests were still encouraged to approach speakers during breaks to continue these important conversations and make valuable connections.

These breaks were also a great way for audience members to get to know each other and learn new things about diseases, business economics, and tech startups (and many more) from the people who know them best. During lunch, we met a gynecology nurse who was interested in Fibromyalgia, and my mother was able to teach her about the disease. My mother and I also provided human examples of the condition to curious guests, helping to dispel the stereotypes about Fibromyalgia by showing that a young person can be healthy AND have this condition, and that my mother was once very sick and is now highly functional. In that way, we both helped educate people we met, making connections instead of relying on clinical data or research papers. This person-to-person networking allowed people with very little experience with Fibromyalgia, but an engagement with medicine or healthcare policy, to gain a realistic understanding of the condition and its treatment options.

Filed Under: Fibromyalgia, Health maintentance, Research, Symptoms, The Medical Community Tagged With: education, fibromyalgia, misperceptions, missing the diagnosis, New York Times Health For Tomorrow Conference, pediatric fibromyalgia

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