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

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Editor’s comment: P2P is the acronym for “Pathways to Prevention,” a program developed by the National Institutes of Health. According to the NIH, “The goal of the Pathways to Prevention (P2P) program is to host workshops that identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area, suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue.”

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: The Mind-Body Connection 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 also find them on Facebook and Twitter.

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!

For more information about “fibromyalgianess,” see: “Patient Harm: The Facts and the Effects ofFibromyalgia Diagnostic Criteria.”

_________________________

About the author: Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain, Fall Devotions devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy. You can read more educational information and about her books on her website, TheseThree.com.

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3 thoughts on “Color Me M&M: The NIH P2P Report on Opioids and Fibromyalgianess”

  1. RebekahJones says:

    “fibromyalgianess” What an incredibly stupid word! Let’s all just invent new labels. I’ll start:

    asthmaness
    heart diseaseness
    cancerness
    hypothyroidness
    multiple sclerosisness
    Alzheimer’sness

    Try using these labels next time you are in your doctor’s office and he/she just might order you be checked into the psycheness ward.

    In case you missed my point…the person who invented “fibromyalgianess” needs to have his/her head examined!

    1. SiSiRN says:

      Rebekka, you echo the sentiments shared with by a Rheumatologist friend of mine. TY for commenting. Well said.

    2. SiSiRN says:

      As you can see, my memory is a nanosecond long, Rebekah. Please accept my apologies for the misspelling.

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