Monday, November 3, 2014

”FIBROMYALGIANESS”—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria by Celeste Cooper


Someone recently shared a comment made by her physician at Duke University that horrified me. I was appalled that a physician would make such a statement, so I want to share my reaction with you. It goes like this…


Duke University physician reportedly said:
"You do know that fibromyalgia is just a word we use 
to talk about psycho-somatic pain, don't you?"


Could it be she read “The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity”? (Wolfe, 2014). In a letter to follow this blog, I will be looking into whether or not the American College of Rheumatology has approved the 2010 criteria. It appears they consider comorbid conditions of migraine and IBS (herethat are not considered in the Wolfe criteria as follows:”

“Of the binary variables, irritable bowel syndrome, abdominal pain, and headache had variable importance. However, they added no power to correct classification and we did not include them in the diagnostic criteria.” (Page 208, Wolfe, et al., 2010).

Could it be this Duke University physician is unaware of what others in the field have to say? See “ACR 2010 criteria for fibromyalgia critiqued by: Mary Ann Moon, Family Practice News Digital Network, here

Could it be that she did not see Dr. Sean Mackey’s lecture at Stanford University that I believe supports key elements in the 2013 Alternative Diagnostic Criteria? You can view it here.

This attitude toward fibromyalgia must be stopped in its tracks if we are to maintain forward momentum. There is a great deal of empirical evidence showing FM is biological. Yet, despite repeated research that the brain of the FM patient does not respond to painful stimulus in a normal way, (not only the emotional center, but also the center in the brain that specifically interprets pain), many practitioners, even those from Duke University, are ignorant. The 2010 Preliminary Proposed Diagnostic Criteria modified in 2011 set forth by Dr. Frederick Wolfe are endangering the many strides taken to understand fibromyalgia over the past 100+ years.

“[Fibromyalgia] has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyositis.” (Excerpt Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection.)

http://www.dsm5.org/


We also have the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) from the American Psychiatric Association's (APA) to thank for what Dr. Wolfe calls FIBROMYALGIANESS. Marly Silverman and I wrote about, and predicted, this two years ago in a piece on the prospects of the DSM-5.     






I have been in collaboration with well-respected fibromyalgia expert Dr. Robert Bennett, and have written a blog explaining his well-researched diagnostic criteria, which DOES consider all aspects of fibromyalgia. He and his colleagues report their findings without bias. I hope you will read that blog here. Pay close attention to the example of the 2013 Alternate Fibromyalgia Criteria (2013 Alt FM Criteria) and the proven tools such as the Fibromyalgia Impact Questionnaire (see: http://fiqrinfo.ipage.com/). Following is an excerpt from that blog with my comments.

*1. “Fibromyalgia patients have a continuum of symptoms; a diagnosis based on a strict numerical cutoff is subject to error.” In other words, a physician or nurse practitioner should not be limited by a subjective questionnaire. They should rely on their abilities to physically assess a patient with hands-on exam to assess physical complaints, take a patient history, order and interpret test results, complete a physical exam, and apply their diagnostic skills. No practitioner should limit the scope of their abilities. Without these expert assessments, we would not know that the tender point count has not stringently met the 1990 ACR criteria.

*2. “The presence of another pain disorder or related symptoms does not rule out a diagnosis of fibromyalgia.” We know from the literature that fibromyalgia can and often does coexist with certain other disorders, such as those defined by the CDC. Dr. Wolfe's modification of his 2010 criteria suggests in point three under the description of the criteria above in order to diagnose fibromyalgia, “the patient does not have a disorder that would otherwise sufficiently explain the pain.

* 3. “A careful clinical evaluation is always required in order to identify any condition that could fully account for the patient’s symptoms and/or contribute to the severity of the symptoms.” A clinical evaluation includes the parameters mentioned above in *1. The Bennett investigators conclude that a patient’s symptoms should be investigated seriously and not be dismissed as poly-symptom somatic complaints as suggested by the Wolfe team of investigators. This is important because many of the symptoms fibromyalgia patients experience can be attributed to other treatable conditions that affects patient outcome.

I had to respond to the likes of the Duke University doctor, because she is not alone thanks to the likes of Dr. Wolfe who uses unapproved APA tools and handpicked databases for his research. I am not a scientist, nor a statistician, however I did conduct a study while in college, and I can tell you that doing an unbiased literature review is research 101. Choosing only literature that fits your hypothesis is flawed. Oddly enough, or not so oddly enough, I recently saw an article in a Physicians online journal “Healthcare Professionals Network” here that suggested Dr. Bennett endorsed the 2010 Wolfe Criteria carte blanche. In fact, the Bennett Alternative Criteria published in the September issue of Arthritis Care and Research, (Bennett, et al. 2014), includes a comparative analysis. Yet, this reporter made no mention that the 2013 Alternate Criteria outperformed the Wolfe, et al 2010 modified criteria in key areas. This partiality makes his report nothing short of propaganda.

Remember, if your physician is not helping you feel better physically, mentally, and emotionally, they have issues, not you! If they are not conducting a physical exam and considering common comorbid conditions to fibromyalgia, they are negligent. If you are harmed by their disregard for your complaints or inconsiderate statements, report them. (See the links on my website here.) Next time, record your visit. Plenty of chronically ill patients need to have counseling for dealing with their symptoms, but to need it because of a doctor that took an oath to do no harm is unacceptable.

postea: added after original blog post:

To whom it may concern—American College of Rheumatology… Criteria for Diagnosing Fibromyalgia, by Celeste Cooper


Resources:

Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Med. 2013 May 20. doi: 10.1111/pme.12139. [Epub ahead of print]

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
http://www.biomedcentral.com/1472-6890/12/25

Bennett RM. Opinion on preliminary guidelines for the clinical diagnostic criteria for fibromyalgia Practical Pain Management, July/August, 2010, Volume 10 (6) pages 76-79. 

Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]

Buskila, D, Neumann, L, Alhoashle, A, and Abu-Shakra, M. “Fibromyalgia syndrome in men,” Seminars in Arthritis and Rheumatism 30, no. 1 (2000): 47–51.
Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C. Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions. Pain Med. 2012 Dec;13(12):1639-47. doi: 10.1111/j.1526-4637.2012.01523.x. Epub 2012 Nov 21.

Cook D. B., Lange G., Ciccone D. S., Liu W. C., Steffener J., and Natelson B. H. Functional imaging of pain in patients with primary fibromyalgia, Journal of Rheumatology, 31, no. 2 (2004): 364–78.

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Craggs JG, Staud R, Robinson ME, Perlstein WM, Price DD.Effective connectivity among brain regions associated with slow temporal summation of C-fiber-evoked pain in fibromyalgia patients and healthy controls. J Pain. 2012 Apr;13(4):390-400.

Flodin P1, Martinsen S, Löfgren M, Bileviciute-Ljungar I, Kosek E, Fransson P. Fibromyalgia Is Associated with Decreased Connectivity Between Pain- and Sensorimotor Brain Areas. Brain Connect. 2014 Aug 7. [Epub ahead of print]

Gonzalez B, Baptista TM, Branco JC, Ferreira AS.Fibromyalgia: antecedent life events, disability, and causal attribution. Psychol Health Med. 2013 Jan 17. [Epub ahead of print]

Kosmidis ML1, Koutsogeorgopoulou L1, Alexopoulos H1, Mamali I1, Vlachoyiannopoulos PG1, Voulgarelis M1, Moutsopoulos HM1, Tzioufas AG1, Dalakas MC2. Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study.

Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.

Staud R, Craggs JG, Perlstein WM, Robinson ME, and. Price DD, “Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls,” European Journal of Pain (March 2008).

Dr. Sean Mackey, assistant professor of anesthesia at the Stanford University Medical Center, “An Update on Fibromyalgia.” https://www.youtube.com/watch?v=jtc2JARVpPw&feature=em-subs_digest-vrecs  (accessed 10-30-2014).

Mary Ann Moon, “ACR 2010 criteria for fibromyalgia critiqued.” Family Practice News Digital Network.http://www.familypracticenews.com/news/journals/single-article/acr-2010-criteria-for-fibromyalgia-critiqued/31131c4db6bf3642dd8748c0ad23f08b.html (accessed, 10-29-2014).

Frederick Wolfe. Fibromyalgianess. Arthritis Care and Research. DOI: 10.1002/art.24553 Article first published online: 28 MAY 2009. http://onlinelibrary.wiley.com/doi/10.1002/art.24553/full

Fibromyalgia: an INTERVIEW with Dr Frederick Wolfe, University of Kansas School of Medicine. Medical Net News. 

Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles,  Don L. Goldenberg, Robert S. Katz, Philip  Mease, Anthony S. Russell, I. Jon Russell, John  B. Winfiled, and Muhammad B. Yunus. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research, Vol. 62, No. 5, May 2010, pp 600–610. DOI 10.1002/acr.20140

Wolfe F, Brähler E, Hinz A, Häuser W. Arthritis Care Res (Hoboken).Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.


~ • ~ • ~ • ~ • ~ • ~
Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
New Website
Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


5 comments:

dogkisses said...

AWESOME POST!

Rebekah Jones said...

Hey Celeste :) You go girl! A couple of years ago, just after I moved to MO, I went to a clinic and as the nurse and I were going over my meds and conditions she asked me, "So did are you sure a doctor told you that you that you have such a thing called Chronic Fatigue Syndrome or did you just read that name somewhere?" I was stunned! My symptoms of FM/CFS go back to my teenage years. I've been dealing with all of this for decades. I've seen numerous doctors - traditional and alternative. I've interviewed doctors. I'm a published author re: coping with FM. And here I was being asked such an archaic question! I responded by telling her I had been diagnosed by one of the leading specialists in the field. But I didn't stop there. I just couldn't help myself...I said, "Wow, I did not know there were any dinosaurs like you left!" And then I laughed. She didn't think it was so funny. Too bad! When the doctor came in and I related the exchange to him, he didn't think what she said was so funny. He said she had no right to ask me such a question and he would be speaking to her. He then assured me he believes FM/CFS are real conditions. It's bad enough to feel so crummy but then we have to fight so many in the medical community too! Celeste, thank you for all that you are doing for all of us!

Maureen Mark DiOrio said...

THANK YOU, CELESTE! You are right on the money and bless you for digging in and advocating and backing up with research of your own. Your grit gives me determination. I've been treated far too many times by "specialists" like the one noted from Duke University who have belittled me. Thank you, thank you, thank you.

Maureen DiOrio

Maureen Mark DiOrio said...

THANK YOU, CELESTE!!! You continue to fight for all of us and your grit gives me determination to keep fighting. Thank you for your continuing research and writing to promote the TRUTH. I, too, have been belittled by "specialists" like this one from Duke University. Thank you and bless your heart!

Celeste Cooper said...

Many thanks to all who have comments and offering of support. I hope you will re-post in your groups so we can continue forward momentum. We never know how far away or by how many our voice will be heard.

In healing and hope, Celeste

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