Dr. Congdon’s Newsletter
Menu

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

By

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.

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

By

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

 

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

By

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.

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

By

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.

Can’t See The Forest For The Trees

By

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