Google+ Followers

Saturday, January 31, 2015

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:


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN



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


Saturday, January 24, 2015

Pushing the Reset Button on My New Year’s Resolutions by Celeste Cooper


How are you doing with your New Year’s resolutions? I know I am working at them; I even have them listed and taped to the top of my laptop so I don’t forget.

  • M-F— write 1,000 words each day.
  • M-W-F—10 minutes of Yoga.
  • Tu-Th-Sa—T’ai Chi (at least the 24 movements).
  • Every day—meditate.


But, is this a wise thing to do?

I am making an effort, but like all people living with chronic pain, some days are better than others. If I am honest with myself, I would give myself a D. That’s not much of a self-esteem booster, is it? I am certainly writing, but the thing is—the 1,000 words are intended to be on my next book. Instead, I am writing blogs like this one. In the suggested New Year’s resolution for writers, sticking to the goal means avoiding distractions and they suggest the biggest for everyone is social media. So while the intent is there, my effort is not would it should be. Or is it?

How we manage our resolutions is most likely more important than making them in the first place, especially in the face of illnesses that can cause a flare. We are already dealing with the overdoing we experience after the holidays. Shouldn't I be kinder to myself, cut myself some slack, provide for down time so I can manage my real priorities and work on striving for that balance I talk so much about in my books?  


It's not the amount of time as much 
as it is about how I use and manage it.


I need to regroup. I will set aside time for my other New Year’s Resolution, the one that didn't make it to that note on my laptop, learning how to use my new digital SLR camera. I even bought a book on how to use it and it still sits there, not a page turned. I give tips to others on how to set priorities, now it’s time to do them for myself. There is such peace and appreciation when I am totally in that moment of photography, seeing life from various angles and resolutions through the lens of my camera. That is the metaphor for living, not sticking to New Year’s resolutions.

I still need to make the effort when I can—no excuses, but aren't New Year’s resolutions intended to make us wiser, more accomplished? I think in order to do that, we must focus on the intent instead of holding ourselves up for defeat. That is a more attractive resolution.

So I am pushing the reset button. My New Year’s resolutions now read.

  • Find resolve, peace, and joy.
  • Experience a sense of accomplishment.
  • Find a way to achieve despite the obstacles of chronic illness and pain.


How will your resolutions change when you hit the reset button?


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN



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


Saturday, January 17, 2015

Germans Suggest Only Medication for Depression is for Fibromyalgia by Celeste Cooper


As Suspected


Using the “Preliminary ACR” diagnostic criteria is taking us down the wrong road. As I was perusing Pub Med, I found many papers, some pro and some con, on this supposed unapproved diagnostic criteria developed by Dr. Frederick Wolfe as principle investigator. (See the letter I received from the American College of Rheumatology, here.)

Interestingly, those studying fibromyalgia in cancer patients do not agree. This is a sampling that speaks to my concerns as drafted in my last blog. Hey! American College of Rheumatology, What’s the Deal?


Dreher T, Häuser W, Schiltenwolf M.
 [Fibromyalgiasyndrome - updated s3 guidelines]. Z Orthop Unfall. 2013 Dec;151(6):603-9. doi: 10.1055/s-0033-1350985. Epub 2013 Dec 17. [Article in German]


According to the modified ACR criteria, 2010, chronic widespread pain and accompanying sleep disturbances and a physical as well as mental state of exhaustion lead to the diagnosis of fibromyalgia syndrome. It is not mandatory to check tender points (ACR 1990 criteria). A graduated treatment approach depending on the severity level of the fibromyalgia syndrome in the individual patient is recommended. Active treatment options (aerobic training, meditative movement therapies, strength training) should be preferred to any drug therapy in the long-term treatment of fibromyalgia. If indicated, amitryptiline or duloxetine may be used to treat accompanying depressive or generalised anxiety disorder. Muscle relaxant medication, non-steroidal anti-inflammatory drugs and strong opioids should be avoided. The multimodal pain therapy considering all psycho-social aspects is a promising treatment option for fibromyalgia syndrome of moderate to high severity. {So it’s back to all in our head. All these treatment modalities would be recommended to anyone with chronic pain, they are not specific to FM. Interestingly, Hauser and Wolfe have done studies together. And hey! these criteria have NOT BEEN APPROVED BY THE ACR. Cc]



Change Perspectives


You will find the following study very interesting from an entirely different perspective.

Tanriverdi O.
Is a new perspectivefor definition and diagnostic criteria of fibromyalgia in early stage cancerpatients necessary? Med Hypotheses. 2014 Apr;82(4):433-6. doi: 10.1016/j.mehy.2014.01.018. Epub 2014 Jan 27.


Fibromyalgia is a most common pain syndrome characterized by the presence of chronic widespread pain and tenderness with manual palpation. However there is no enough data about frequent of fibromyalgia syndrome in patients with cancer. How often FM is being used in oncological practice and how we are managing this case by medical oncologists. Widespread pain index and symptom severity scale are not clear enough in patients with cancer when ACR-2010 diagnostic criteria for FM are considered. In conclusion, there is it may more prevalence of fibromyalgia in patients with cancer. For the diagnosis of fibromyalgia, be new diagnostic criteria for early-stage cancer patients.


Criteria that Affects the Future of Fibromyalgia



As most of you know, I support the Bennett, et al critieria for obvious reasons and they are given in my my blog “The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here.

I would like to see how it performs in the real world. My suspicions are that it will outperform, there will be fewer gray areas, and answer the questions asked by Dr. Tanriverdi.




A Sampling - Collaboration between Dr. Wolfe and Dr. Häuser


Fibromyalgia prevalence, somatic symptom reporting,and the dimensionality of polysymptomatic distress:results from a survey of the general population.


Arthritis Care Res (Hoboken). 2013 May;65(5):777-85. doi: 10.1002/acr.21931.

See the interview on this paper here. 



Fibromyalgia and physical trauma:the concepts we invent.

 Abstract

CONCLUSIONS:

Despite weak to nonexistent evidence regarding the causal association of trauma and fibromyalgia (FM), literature and court testimony continue to point out the association as if it were a strong and true association. The only data that appear unequivocally to support the notion that trauma causes FM are case reports, cases series, and studies that rely on patients' recall and attribution - very low-quality data that do not constitute scientific evidence. Five research studies have contributed evidence to the FM-trauma association. There is no scientific support for the idea that trauma overall causes FM, and evidence in regard to an effect of motor vehicle accidents on FM is weak or null. In some instances effect may be seen to precede cause. Alternative causal models that propose that trauma causes "stress" that leads to FM are unfalsifiable and unmeasurable.
J Rheumatol. 2014 Sep;41(9):1737-45. doi: 10.3899/jrheum.140268. Epub 2014 Aug 1.


 Abstract

CONCLUSIONS:

All patients with fibromyalgia will satisfy the DSM-5 "A" criterion for distressing somatic symptoms, and most would seem to satisfy DSM-5 "B" criterion because symptom impact is life-disturbing or associated with substantial impairment of function and quality of life. But the "B" designation requires special knowledge that symptoms are "disproportionate" or "excessive," something that is uncertain and controversial. The reliability and validity of DSM-5 criteria in this population is likely to be low.
PLoS One. 2014 Feb 14;9(2):e88740. doi: 10.1371/journal.pone.0088740. eCollection 2014.


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."
Celeste Cooper, RN
Author, patient/ advocate, fibromyalgia health expert


Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 
Fibromyalgia expert on Sharecare, here
Participant in the Pain Acition Alliance to Implement a National Strategy, here.



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

Thursday, January 8, 2015

Hey! American College of Rheumatology, What’s the Deal? by Celeste Cooper


I have concerns regarding the response I received from the American College of Rheumatology (ACR) regarding fibromyalgia diagnostics. You can read my inquiry letter here and the ACR response to that letter hereCould it be the ACR is distancing itself from the fibromyalgia the controversy? 

My concerns as follows:

  • Some studies show immune dysfunction in fibromyalgia, so could fibromyalgia be treated by immunologists in the future?
  • Studies show the brain of the fibromyalgia patient is structurally affected, so should neurologists study and treat fibromyalgia?
  • Other research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE). If this is the case, knowing a hallmark symptom is indeed overwhelming muscle and soft tissue pain and anomalies, shouldn't it stay right where it is—under the umbrella of rheumatology?
  • What kind of research can we expect in the future, and investigated by whom?
  • If the ACR will not endorse any criteria, who will?
  • Don't clinicians currently look to the ACR for guidance, as they would look to the American College of Neurology for diagnostic criteria for MS?
  • Can we expect consistency if so many are being misdiagnosed with fibromyalgia as we are seeing with the Wolfe, et al criteria? How will a tainted study participant pool yield accurate results?
  • Exactly who should be responsible for amending and updating the criteria for diagnosing fibromyalgia to reflect research findings moving forward?

Can we expect research funded by outside sources to be based solely on their intent to prove their product to boost their bottom line? Are we to be okay with having half the participant pool misdiagnosed with fibromyalgia when they actually have a mental health disorder? See the following excerpt from a blog I posted in April 2013, Fibromyalgianess is ALL in Our Head? My Correspondence with DrFrederick Wolfe.

Celeste Cooper (Me): I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the [Preliminary Proposed Diagnostic Criteria for Fibromyalgia] PPDCFM when they can be linked to specific comorbid disorders and treated appropriately. Marla Silverman and I co-wrote an ADVOCACY PIECE over a year ago regarding our concerns for CFS/ME and FM in the new DSM-5, and now our concerns are born out. I fear it is because the PPDCFM specifically identifies somatic complaints associated with FM without tying them to the comorbid disorders other than IBS and hypothyroidism and that 40% of FM patients (as you report) fall into this DSM-5. This is significant.

 Dr Wolfe’s email response: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment.

I am surprised that Arthritis Care and Research would allow the ACR to be named in titles if they indeed want to distance themselves from any criteria, ie. New American College of Rheumatology Criteria for Fibromyalgia: A Twenty-Year Journey by Frederick Wolfe, published in Arthritis Care and Research, May, 2010. This is just one of many examples. Folks are referring to these unapproved criteria as the new ACR criteria in their papers.


Is It Just Me?

Is it just me, or does the ACR letter seem ambiguous? Following are excerpts that factored into my conclusion.

… the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al… but the criteria were not yet validated in an external dataset so full endorsement could not yet be given… Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval.  
… the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria. …we recognize that there will be exceptions to any standard criteria that are developed.  Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future. [So why are the suggesting that once it is validated by an outside source, it is to be resubmitted for consideration of full approval. CC]

You can read the full letter here.

And what about the Bennett, et. al criteria? No mention, even though it was published in the September, 2014 Arthritis Care and Research?


By the Seat of Their Pants—Post Exfacto

I believe the ACR is flying by the seat of their pants on this one, post exfacto (after the fact). The Wolfe criteria have been criticized for the same reasons I am concerned. The criteria under-performs and identifies patients with FM at a much greater rate than the 1990 criteria. It doesn't take a rocket scientist to figure out this is because they are diagnosing fibromyalgia in patients with somatic symptoms disorder (pdf here). 

A direct quote from the DSM-5:
 "...while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained."

Is it starting to make sense as to why some physicians now see fibromyalgianess as a label for psychosomatic illness? 


What can we do?

  • Talk to your physician about what criteria he or she used to make your diagnosis.
  • Make your providers aware of the stance the ACR has taken.
  • Educate your provider on the Bennett Alternative Criteria. (See my blog, which was over-viewed by Dr. Bennett. http://fmcfstriggerpoints.blogspot.com/2014/09/the-2013-alternative-criteria-dr-robert.html#.VAS01fldU6w
  • Share this blog with your doctor or his/her nurse. Ask about their opinion and write about it. We all need to hear encouraging words. I am thankful to say, there are those who strongly disagree that fibromyalgia is a psychosomatic illness.
  • Write to the American College of Rheumatology, here and to the editor of Arthritis Care and Research, here
  • Support the researchers with your gratitude for what they do. (You can usually find an email address for the lead investigator in the abstract on PubMed, here. 
  • Use the helpful links on my website, here.



~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN



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

Friday, January 2, 2015

A New Year’s Resolution with Pain by Celeste Cooper


 http://www.amazon.com/Broken-Body-Wounded-Spirit-Balancing/dp/0615924050/

My body aggravated, confused by physical tests,
But pain lacks capacity to conquer my best.
Dear pain, for you, is a New Years request.

Don’t cloud my wits—attack, bother, or nag.
My mind won’t accept what it is that you add.
There will be consequences when you are bad.

I am mindful of judgments you propose to my ear.
In positivity, a spirit is absent of fear,
Affirmation awakens to all I hold dear.

Don’t threaten my spirit; make me weary or weak,
Negotiate no limits from my head to my feet.
Courage smuggled into the light, your defeat.

No blind expectations pain, we are akin,
But mind—spirit nurtures what resides in this skin.  
So it is with resolve that this New Year begins.



HAPPY NEW YEAR!

"Adversity if only an obstacle if we fail to see opportunity."
Celeste Cooper, PainPathways Magazine, Inspiring Moments, Winter 2014-2015

Saturday, December 20, 2014

Part II – Proprioception in FM and MPS: Are you a bull in the china cabinet? What can we do? by Celeste Cooper


In “Part I, Proprioception: Are you a bull in the chinacabinet? Is it fibro or myofascial pain syndrome?”  we talked about proprioception, what it is and how it relates to fibromyalgia (FM) and myofascial pain syndrome (MPS). 


PART II

It’s morning and if you are like me, you can see that your feet are attached to your body as you place them on the floor. Unfortunately, for some of us, as we start to walk, our appendages seem completely unaware of where they are. Our feet should go in the direction we believe we are headed, and our arms should not hit door jams that we have lived with for 10+ years. Slam, bang, crunch, there’s that darn wall again.

What can we do to improve balance and minimize 
the bull in the china cabinet effect?


Treating the myofascia

For the myofascial pain syndrome group (considered by many as the most apparent comorbid disorder to FM, usually a pain specialist, physical therapist, or body-worker) treating trigger points  in sternocleidomastoid and its branches is imperative.

The first treatment suggestion is to identify and correct perpetuating factors and adapt trigger point therapies that calm the hypersensitive areas in the myofascia.

Perpetuating factors include poor spinal alignment, repetitive motion, static positioning, carrying a purse or backpack that is too heavy, head forward posture, extended computer time, ill fitted chair, out of control comorbid conditions, etc.

Releasing trigger points by manual techniques can reduce or alleviate pain. However, it is important to remember that if you also have FM or CFID, the release of cellular byproduct from muscle manipulation can instigate a flare of FM or CFID symptoms. Stay hydrated, even after self-treatment. 

“Trigger points do not respond to positive thinking, biofeedback, meditation, or progressive relaxation. They respond only to physical intervention. However, positive thinking, biofeedback, meditation, and progressive relaxation can help prevent the stress that is thought to aggravate chronic myofascial pain.” (Cooper and Miller, 2010)

Therapies to improve balance

Therapies that are thought to improve balance and proprioception are T’ai Chi, gentle chair Yoga, gentle stretches, whole body vibration, and myofascial release. Also helpful is to balance on a therapeutic ball to improve your kinesthetic awareness (in this case, knowing where your legs and feet, and arms and hands are located). Neuroscience validates that we can train our brain. People with traumatic brain injury are learning to live life again. 

“The only way we could remember would be by constant re-reading, 
for knowledge unused tends to drop out of mind. 
Knowledge used does not need to be remembered; 
practice forms habits and habits make memory unnecessary. 
The rule is nothing; the application is everything.” 
― Henry Hazlitt, Thinking as a Science


Also see:

Five Safety Tips for the Holidays for Persons Living with Fibromyalgia and Myofascial Pain Syndrome by Celeste Cooper


Resources:

Carson JW1, Carson KM, Jones KD, Bennett RM, Wright CL, Mist SD. A pilot randomized controlled trial of the Yoga of Awareness program in the management of fibromyalgia.
Pain. 2010 Nov;151(2):530-9. doi: 10.1016/j.pain.2010.08.020.

Castro-Sánchez AM1, Matarán-Peñarrocha GA, Arroyo-Morales M, Saavedra-Hernández M, Fernández-Sola C, Moreno-Lorenzo C. Effects of myofascial release techniques on pain, physical function, and postural stability in patients with fibromyalgia: a randomized controlled trial. Clin Rehabil. 2011 Sep;25(9):800-13. doi: 10.1177/0269215511399476. Epub 2011 Jun 14.

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

Prado ET1, Raso V2, Scharlach RC1, Kasse CA1.Hatha yoga on body balance.Int J Yoga. 2014 Jul;7(2):133-7. doi: 10.4103/0973-6131.133893.

Sañudo B1, Carrasco L, de Hoyo M, Oliva-Pascual-Vaca Á, Rodríguez-Blanco C. Changes in body balance and functional performance following whole-body vibration training in patients withfibromyalgia syndrome: a randomized controlled trial. J Rehabil Med. 2013 Jul;45(7):678-84. doi: 10.2340/16501977-1174.

Jones KD1, Sherman CA, Mist SD, Carson JW, Bennett RM, Li F. A randomized controlled trial of 8-form Tai chi improves symptoms and functional mobility in fibromyalgia patients.Clin Rheumatol. 2012 Aug;31(8):1205-14. doi: 10.1007/s10067-012-1996-2. Epub 2012 May 13.


 ~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."
Celeste Cooper, RN
Author, patient/ advocate, fibromyalgia health expert


Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 
Fibromyalgia expert on Sharecare, here
Participant in the Pain Acition Alliance to Implement a National Strategy, here.


Thursday, December 18, 2014

The ACR Responds to My Inquiry on the Fibromyalgia Diagnostic Criteria - Should I Scream or Cry? by Celeste Cooper


Finally, we have a response from the American College of Rheumatology (ACR) regarding my letter which was spirited by my blog FIBROMYALGIANESS—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria. 

While this was not the response I was hoping for (because I favor the Bennett 2013 Alternative Criteria, which you can view here), it is an answer and I am thankful to Jocelyn Givens.

Could it be the ACR is distancing itself from fibromyalgia, fibromyalgianess, and the controversy? With some research suggesting that fibromyalgia is immune mediated and other research suggesting it is a problem within the brain, could fibromyalgia be adopted by immunology or neurology? If  research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE), shouldn't it stay right where it is, under the umbrella of rheumatology? Are we back to square one? What kind of research can we expect in the future, and investigated by who? Who will set the criteria for making sure patients in studies do, in fact, have fibromyalgia? Don't clinicians currently look to the ACR for guidance, like they would look to the American College of Neurology for diagnostic criteria for MS? Surely I am not alone in my concerns.

Sometimes described as an “orphan” disorder, FM is much like an unclaimed waif. Finding its closest molecular relative will determine its scientific classification.
 Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain…

12/18/2014

Good Morning, Celeste.

Thank you for your interest in the ACR’s efforts related to criteria. I reached out to our Senior Director of Quality regarding your inquiry and received the following information that I hope you will find helpful.

At the time of publication, the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al.  What this means is that the ACR reviewers agreed that the drafted criteria were a reasonable first step to developing new criteria in this area, but the criteria were not yet validated in an external dataset so full endorsement could not yet be given.  The purpose of ACR provisional endorsement of criteria is to encourage investigators in the field to do the necessary validation work to confirm if the criteria are actually as promising as they look during the initial review.  Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval. 

In the case of the Wolfe criteria, however, even if good external validation work is done, they will not receive full ACR endorsement because the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria.  The main reason for this is because ACR endorsement of diagnostic criteria can negatively impact access to care and appropriate treatment for patients with that condition, which is clearly not our goal. 

The ACR believes there is value in diagnostic criteria, because they are helpful as guidance to clinicians and patients as they make decisions about care, but we maintain that the final decision about any patient care should remain between the physician and patient, i.e, we recognize that there will be exceptions to any standard criteria that are developed.  Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.

Again, thank you for your interest, and I hope we have been able to address your concerns.

Jocelyn Givens
Senior Specialist, Public Relations

American College of Rheumatology

Wednesday, December 17, 2014

Over a Month – Who’s Counting? I Am! by Celeste Cooper




December 17, 2014

To whom it may concern.

I understand the ACR has many issues to tackle, but the right diagnostic criteria for fibromyalgia is a very important issue. The media is reporting on concerns with the 2011 criteria. Follow up studies show the 2011 criteria is inefficient in defining fibromyalgia. My hopes are that the ACR is taking their time to get it right, but there is no way for me to know, because I have not received a reply or acknowledgement that you have received the following letter sent on November 3, 2014.

Thank you for what I hope will be a timely response.

Celeste Cooper, RN, educator, author, advocate, health expert on fibromyalgia at Sharecare.com

You can access the November 3, 2014 letter here

Tuesday, December 9, 2014

2 Day Free Book Download - WINTER DEVOTIONS, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain (Series)


Just in time for the winter season, we are giving our readers a free download of the Kindle version on Saturday, December 13, 2014 beginning 12:00 AM PST ending Sunday December 14, 2014 at midnight. No thanks necessary, but it would make us ecstatic if you would leave a review on Amazon. 

Happy Holidays

Download at:




Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain (Series)
WINTER DEVOTIONS
by Celeste Cooper, RN, BSN and Jeff Miller, PhD

There is nothing charismatic about chronic pain. Pain is greedy and demanding. It consumes our time, our relationships, and our function; it threatens everything that is important in our lives, and threatens to rob us of our character and our dignity.

The winter season is often compared to dying. This death allows us to come full circle and prepare for new ways of thinking, ways that allow us to reclaim control and defend ourselves against the grotesque monster that creates fear, agony, loneliness, and resentment.

Sharing their medical expertise, and Celeste as patient and advocate, the authors start with a blank canvas as white as the pure driven snow, full of possibilities. Offering a blend of integrative therapies and day by day tidbits of wisdom, the authors encourage their readers finalize to create a picture worth a thousand words, and encourage them to explore their unique, and sometimes, universal experiences. 
Join in as we walk the barren winter landscape that is necessary to rid ourselves of previous conceptions as we prepare for the spring season of rebirth.

 
Published by ImPress Media (2013)
ISBN:  13: 978-0615924052   ASIN (Kindle Ebook): B00HAVXLYO
Available at all major online retailers in 6” x 9” paperback.


“This lovely book of devotions is rich with insight and practical suggestions for any one with chronic pain. It is filled witch inspirational and healing words dealing with topics from nutrition, exercise and sleep to relating successfully to your doctor.”
~Susan E. Opper, MD, Medical Director of Saint Luke’s Pain Management Services, Saint Luke’s Hospital of Kansas City.

“I love the very idea of “Winter Devotions”.   The struggle of living with chronic pain is compounded for many by the winter months when it is cold, damp, and often gloomy.  Bones ache, joints hurts, and the spirit sometimes become depressed. This wonderful book provides a tool to help with those issues.  The quotes, photography and motivation of authors Celeste Cooper and Jeff Miller all bring much needed hope and relief.”

~Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Principal Investigator of the Pain Action Alliance to Implement a National Strategy.
and more...
(See Reverse)
"...When pain is in 'boss mode,' it detracts from our innate need to socialize and contribute, and confronting chronic pain takes constant reminders..."

Following are a few thought provoking questions you interact with Winter Devotions:

  • How can I find balance in my strengths and weakness?
  • How can I clear my path today and take out unnecessary accumulated thoughts?
  • How can I change my word energy?
  • How does freeing memories make me feel?
  • How can I make healthy substitutions this winter?
  • What do those pain terms mean?
  • How can I overcome procrastination?
  • Is there something here I would like to explore?
  • On the pain scale, what is my ten?
  • What is something I always wanted to try, but never made the time? 
  • What rules do I want for my journal?
  • What can I do to maintain and build healthy relationships?
  • Have I thought about my choices? 
  • How can I redirect pain when it gets bossy?



Read more about other books by these authors at http://Thesethree.com (About the Books Tab)

Celeste's Website

Celeste's Website
Click on the picture