Color Me M&M: The NIH P2P Report on Opioids and Fibromyalgianess by Celeste Cooper

The following excerpt is from NIH P2P “The Role of Opioids in the Treatment of Chronic Pain,” which you can download and read here.

“The typically used 0-10 pain scale provides an overall sense of pain, but not an assessment of individual components related to pain. For example, recent work on the concept of “fibromyalgianess” (the tendency to respond to illness and psychosocial stress with fatigue, widespread pain, general increase in symptoms, and similar factors) identifies at least three components to chronic pain that are important to measure: chronic pain or irritation in specific body regions, somatic symptoms (e.g., fatigue, sleep, mood, memory), and sensitivity to sensory stimuli.”

Since when is fibromyalgia a concept? REALLY!?  The investigative world is a buzz with immune expression in fibromyalgia. It is NOT a concept or a belief system and if you have any doubts, read our book, Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome, and Myofascial Pain,   or Breaking Thru the Fibrofog – Proof that Fibromyalgia is Real, which was written by rheumatologist, Dr. Kevin White, or read the many others with good reviews. You can bet I made comments on the report and submitted them to people with far more influence than I submit. (see the following)

Synopsis of my comments:

What a label! The mere mention of this is judgmental… So, are diabetes, heart disease, arthritis and every other chronic illness or pain condition to be called fibromyalgianess when the patient has difficulty coping? This statement is using fibromyalgianess as a term aquatint with a severe mental health disorder called PSSD in the DSM-5… 

Human beings need to feel accepted. Providers become part of the problem when they use "concepts" [referring to fibromyalgianess] as an explanation… It is apparent they are ignorant regarding the literature regarding the biologics of FM and are riding the shirttails of Dr. Frederick Wolfe who coined this term. Important to add is that his research reviews are biased. He uses his own database, and uses "unapproved" tools in his studies for assessing mental health. ONE opinionated person makes it more difficult for patients to effectively deal with their illness. This underlying judgment and opaque rhetoric is part of the problem... To avoid opioid prescribing, they will be passing out antidepressants like candy for this "fibromyalgianess." Unbiased evidence to support antidepressants as a treatment for pain is insufficient. Over time, we know they can cause suicidal ideation in people taking them for pain instead of clinical depression. [We need alternatives; we need research on chronic pain as a disease.]

…There is a growing population of mentally ill patients included in research on fibromyalgia, representative of chronic pain in this report, because the Wolfe fibromyalgia criteria is capturing [patients with somatic symptom disorder] as having fibromyalgia when they do not…We have become complacent by thinking situational psychological distress is the same as a true biological chemical imbalance in the brain. This distinction was not made in this report and I would think it important when discussing the use of opioids, because many chronic pain patients are treated with both.

I couldn't agree more that chronic pain has an emotional component. Take this example. Have you ever experienced the visitor that disrupts a party in a negative way, one you wish would leave, one that puts you on edge, and in some cases, causes severe emotional distress? That is what chronic pain does to the patient, but the unwanted guest never leaves. So, should we say the host is responsible for the guest’s behavior? Think again.

[End of Comment]

What can you do?

Let the National Fibromyalgia and Chronic Pain Association (NFMCPA) know how you feel. You can find them on Facebook and Twitter. You can join here. 

Conclusion

Of course, there is a great deal more to the report, and the rest of it is quite good. I was impressed by the panelists’ responses to questions regarding the P2P report on Opioids for Chronic Pain in the audio question and answer period. It is helpful to hear a human voice and you can listen in too (information following).

I suppose I could be over-reacting because my dander is up regarding “fibromyalgianess.” It’s difficult not to be upset when I hear from patients that their physicians are treating them differently, some being told they need to see a psychiatrist instead of a rheumatologist. The fact is we are intelligent, hard working people that rise above the rigors of daily pain, dysfunctional sleep, and the symptoms of the comorbid disorders identified by clinicians who treat and study fibromyalgia. Sleep studies identify poor slow brain wave progression, periodic limb movement, and teeth grinding. Is this fibromyalgianess too? Some days we do better than others, but isn’t that so for every living thing? What do flowers look like when they go without water?

I cringe when I have to add “fibromyalgianess” to my word processing dictionary. I can only empathize with the many MS patients that blazed this trail before us, trying to survive “hysterical paralysis.” Unfortunately, as Dr. Phil McGraw says, “the predictor of future behavior is past behavior,” quite evident this “concept” is alive and well in the politics of pain.

You can listen to the audio playback of the panelists’ responses to questions regarding the P2P report by calling 888-640-7743; Enter replay code 114001. You can review the panel biographies at www. prevention.NIH.gov

Color me M & M – Mad and Motivated. 

Also see:

Fibromyalgianess—Patient Harm: The Facts and the Effects ofFibromyalgia Diagnostic Criteria by Celeste Cooper

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Update 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.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Resources for the Kansas City Nursing News guest column- ”FIBROMYALGIANESS”— The Facts and the Effects of Fibromyalgia Diagnostic Criteria by Celeste Cooper

Following are the resources pursuant to a guest column that will appear in the Kansas City Nursing News.

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

Resources:

Bennett R, et al. 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][Published 2014 Sept].

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. online: 28 MAY 2009. http://onlinelibrary.wiley.com/doi/10.1002/art.24553/full

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

News medical interview regarding this paper,  March 22, 2013. http://www.news-medical.net/news/20130322/Fibromyalgia-an-interview-with-Dr-Frederick-Wolfe-University-of-Kansas-School-of-Medicine.aspx

Wolfe F, et al. 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.

”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 (here) that 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

http://fmcfstriggerpoints.blogspot.com/2014/11/to-whom-it-may-concernamerican-college.html#.VFpus_nF86w

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.

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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.