Balancing Pain and Illness through Poetry

All Eyes to the Sun © Celeste’s Photography

"Poetry is writing about yourself waiting to see what will show up, the words are the finger points of your soul.”

~Sandford Lyne, author of Writing Poetry from the Inside Out

Maintaining forward momentum in the face of pain, fatigue, and unpredictable symptoms can be challenging. In our book Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS, we talk about inner expression through poetry and how it can help us cope with pain and fatigue. All our books have tips for writing for self-exploration. Poetry is one of those.

___________________________________________________________

APRIL IS POETRY AWARENESS MONTH

___________________________________________________________

Poetry is often thought of as the conduit to our soul. For me, writing poetry heightens my senses and provides an alternative path that promotes mindfulness. The words I chose give my thoughts texture, making them palpable, at least to me. Writing poetry provides a beautiful detour, because unlike physical pain and illness, there are no boundaries, no limitations. We have unabashed freedom to explore and express ourselves using colors, shapes, and concepts we might not otherwise. 

I am in awe of the power of randomly chosen words and their ability to bring me peace. Whether I am working through a difficult situation or embracing the wonders of the world, I know when I'm done, I am connected to an inner being I only know through poetry.

I wrote a blog on how to write “I am” poem, which you can use as a template to write your own.

___________________________________________________________

CREATING AN "I Am" POEM

___________________________________________________________

I love it when the words fly, coming together effortlessly, but that isn't always the case — at times — I have to put my words aside or work from a different angle. But that's why I love to do it.

I wrote this poem staring with four random words: truth, bird, broken, observe. It went through several transformations before I felt a deep meaning for myself. Some of my poems don't make a word of sense to others, but they don't need to. They are mine, just as your will be yours.

This Is My Truth © by Celeste Cooper

Like a bird with a broken wing,

I can stray off course, my flight pattern disrupted.

Wounded from the fall, I will not judge, because

As a wise owl, I observe, I accept, I understand—

Before I take flight, I need time to mend, plan a new course.

This is my truth.

Imperfection as clear as a broken mirror,

Though broken, goals are transformed.

Seedlings forced into maturity will not thrive.

Accepting that mistakes are the seed, I cultivate.

The broken mirror affords a self-reflection of reality.

This is my truth.

I falter, sometimes wretchedly, but enlightened.

Sweet is the nectar of success—not synonymous to perfection.

Erupting from deep inside a reminder from Edison,

"I did not fail; I found 10,000 ways that won't work."

I accept my imperfections—only then—can I take flight.

This is my truth.

I hope you will pick up a pencil and a piece of paper. Write down some of your favorite words, you can find them in crossword puzzles, a good book, the dictionary, or make them up; that's the beauty of it. Let your mind float and your hands glide across the paper as the words guide you to a new place, a place hopefully free of pain and illness, but if you need to work that out, you can go there too by observing until it dissipates in the background. Just do it.

Additional Reading: Minimizing the Consequences of Pain and Illness by Exploring Your Creative Nature through Poetry by Celeste Cooper

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

Criteria for Fibromyalgia on My Radar AGAIN!

Today, I am posting my letter to “Senior Specialist, Public Relations, American College of Rheumatology”. She and I have corresponded in the past on this issue, and I was assured that the ACR was not endorsing any diagnostic criteria now or in the future. Read on and you will see why I felt a need to contact her once again.

Good morning Joyce.

I am writing you because in December of 2014, you sent me a letter stating that the American College of Rheumatology (ACR) was not going to endorse any fibromyalgia diagnostic criteria. Today while researching for a freelance article, I stumbled upon the website for ACR-endorsed Criteria for Rheumatic Diseases (1) demonstrating that the ACR has endorsed the Preliminary Criteria, 2010, Wolfe F, et al. (2)

I am concerned, especially when there are other criteria better befitting the patient, i.e. the Alternative Criteria by Dr. Robert Bennett, et al. (3)  Medscape (4) and Network Rheumatology(5), and many others agree. However, there are clinicians that have been led to believe Dr. Wolfe, et al. criteria are approved, including the CDC (6). Dr. Wolfe also has a checklist on his website, ACR FM 2010 diagnostic criteria questionnaire modified for direct patient administration (7), which is misleading. And, in a Google search I find many articles stating, “How to Use the New ACR Diagnostic Criteria”.

If the criteria are not endorsed, then why was it published in a peer-reviewed journal with such a title, Preliminary Proposed, and why is it on the ACR website, Endorsed Criteria for Rheumatic Diseases? This is extremely important, because clinicians who use these criteria believe it is approved by the ACR, and people are being misdiagnosed. We are back to square one! It’s all in your head, because of these criteria. The ACR needs to take a stance on this. There is sufficient evidence to suggest there is an autonomic effect, loss of heart-rate variability, and an upset in the sympathetic nervous system response in fibromyalgia. There is much more, but suffice it to say, the ACR can search Pub Med.

I appreciate your response to my concerns and appreciate our previous correspondence. As a freelance writer for online health organizations, an author, and advocate, it is important I share accurate information. I am sure you understand.

Thank you in advance for your kind consideration. Celeste Cooper, http://CelesteCooper.com

Resources:

(1) ACR-endorsed Criteria forRheumatic Diseases

(2) Dr. Wolfe, et al.criteria

(3) Bennett R, et al. Arthritis Care & Research (2014) DOI: 10.1002/acr.22301.

(4) Fibromyalgia: NewCriteria Improve Diagnosis-Medscape

(5) Network Rheumatology

(6) CDC – Fibromyalgia

(7) Frederick Wolfe - ACR FM2010 diagnostic criteria questionnaire modified for direct patient administration.

Following is the letter I received from you in December, 2014:

…the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.

You can read the full letter here or on ProHealth 

Other Reading:

• My correspondence with Dr. Frederick Wolfe. Concerns for the PPDC, DSM-5, and disregard for comorbid conditions in FM.  Are we judged by the company we keep?
• The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers. Also available on ProHealth 

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.

Wolfe F¹, Brähler E, Hinz A, Häuser W.

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.

Wolfe F¹, Häuser W², Walitt BT², Katz RS², Rasker JJ², Russell AS².

J Rheumatol. 2014 Sep;41(9):1737-45. doi: 10.3899/jrheum.140268. Epub 2014 Aug 1.

Symptoms, the nature of fibromyalgia,and diagnostic and statistical manual 5 (DSM-5) defined mental illness inpatients with rheumatoid arthritis and fibromyalgia.

 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.

Wolfe F¹, Walitt BT², Katz RS³, Häuser W⁴.

PLoS One. 2014 Feb 14;9(2):e88740. doi: 10.1371/journal.pone.0088740. eCollection 2014.

~ • ~ • ~ • ~ • ~ • ~

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.  

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

~ • ~ • ~ • ~ • ~ • ~

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.

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

pr@Rheumatology.org

acr@rheumatology.org
arhp@rheumatology.org
foundation@rheumatology.org

hannan@hsl.harvard.edu

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

FIBROMYALGIANESS—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria.

You can access the November 3, 2014 letter here. 

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

Following is a letter I wrote to the American College of Rheumatology, as promised in my blog

Fibromyalgianess—Patient Harm: 

The Facts and the Effects of Fibromyalgia Diagnostic Criteria

You can find the blog/article HERE. 

On Sharecare HERE.

Praeludium - Prelude

Having a well-researched, unbiased tool for diagnosing fibromyalgia is imperative to change the way fibromyalgia is judged and treated physically, emotionally, and socially. The correct diagnosis of patients participating in clinical trials is crucial to study results and the ability to secure further research funding. The right research can make a difference in the lives of an estimated five million adult Americans (NIAMS) and of hundreds of millions of fibromyalgia patients worldwide.

November 3, 2014

American College of Rheumatology

acr@rheumatology.org

arhp@rheumatology.org

foundation@rheumatology.org

Marian T. Hannan Editor, Arthritis Care & Research DSc, MPH

hannan@hsl.harvard.edu

To whom it may concern:

I am an RN and pain advocate as part of the Pain Action Alliance to Implement a National Strategy (http://PainsProject.org). I once wrote continuing education programs for the Missouri State Board of Nursing, and I practiced as a legal nurse consultant holding a degree in paralegal studies. I am presently a fibromyalgia expert on Sharecare.com, and I am a published author of several recognized chronic pain self-help books. I am a guest columnist for Kansas City Nursing News. I am also a person living with chronic pain.

I sit in angst because the healthcare industry, of which I have spent most of my adult life, is entertaining the demeaning label of “fibromyalgianess.” I ask, how are we ever to change the way pain is perceived, judged, and treated as set forth in the Institute of Medicine Report, “Relieving Pain in America” if such disingenuous labeling gains general acceptance? This term was coined by Dr. Frederick Wolfe et al. As I am very concerned regarding Dr. Wolfe’s capricious attitude in his published papers on fibromyalgia, I would like to to know if the ACR has formally adopted the Wolf 2010 criteria for diagnosing fibromyalgia.

If we are to move to a biopsychosocial model of healthcare delivery, one cannot use labels that harm patients and their ability to cope. When we enter a physician’s office with hope and leave in tears, our needs are hijacked. Such neglect delays appropriate treatment and assessment of comorbid conditions.

I await a timely response to my request from the American College of Rheumatology on the formal acceptance of the Wolfe , et al. 2010 criteria. Thank you for your time and your consideration in the effort to promote the unbiased reporting of rheumatology research studies.

Sincerely, Celeste Cooper, RN, BSN, Diploma in Paralegal Studies

EMail: Celeste@TheseThree.com

Website: http://TheseThree.com Update http://CelesteCooper.com (April 2015)

cc:

National Institute of Arthritis and Musculoskeletal and Skin Diseases

National Institute of Health – Pain Consortium

CDC, Office of Science Quality

Jan Chambers, President, National Fibromyalgia and Chronic Pain Association

Karen Lee Richards, Fibromyalgia Editor, Pro Health, and Chronic Pain Health Guide, Health Central (Co-Founder National Fibromyalgia Association)

Robert Twillman, PhD, American Academy of Pain Management

Kim Kimminau, PhD, Associate Professor; Director, Center for Community Health Improvement, Kansas University School of Medicine (KUMC)

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 (PAINSproject.org)

Cindy Leyland, Project Director, Pain Action Alliance to Implement a National Strategy (PAINSproject.org).

Pat Anson, National Pain Report

American Chronic Pain Association

National Patient Advocate Foundation

The State Pain Policy Advocacy Network

US Pain Foundation