Friday, September 26, 2014

Pain Awareness Month Draws to a Close - A Recap by Celeste Cooper

September is a busy month for me as advocate, author, educator, and as a person living with chronic pain and illness. It is the month to raise awareness for the other 100,000+ million Americans, and countless others around the globe. And to hopefully change attitudes of discrimination and judgment that threatens our self worth. A time to fight for proper treatments that result in improved outcome.

The Sun is located on the vernal equinox, daylight and dark are equal, and autumn begins. For me, fall marks a time not only to advocate, but to educate my comrades in pain through my blog and through Fall Devotions in our Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain seasonal book series. Personally, I celebrate fall with an annual weekend get together with my healthcare colleagues. We have done this for over thirty years and I have only missed once. To say I embrace our need for socialization, regardless of obstacles, is an understatement. And when I need reminders on how to care for myself, those who share this trek with me, many who are our readers, wrap me in their virtual loving arms.

“Come along, it is time to begin our journey as we walk through the beautiful falling leaves that fill our path with color and diversity. Be prepared to kick up new ideas that come from this season grabbing at those of personal interest, those that entice you to learn more. Decorate your life with vast opportunities that autumn offers. Feel the crisp clean air as it fills you up, and prepare for the bounty you will soon discover.”
Excerpt from the introduction to Fall Devotions.

This is a season of time and energy which threatens to drain me because of chronic migraine and spinal disease, which flare FM and CFS and the autoimmune comorbid disorders I endure. But fear not, it is also a season of vigorous collaboration. The rewards of being a catalyst, a change agent, cannot  be measured. The value is found in humankind giving reason to advocate and educate. Here are the blogs written by me this September.

I am continually lifted up no matter how bleak one day may seem, because there is another in the past or the future that is sure to adjust my perspective.

“I cherish my friends because we stand together 
heading in the same direction.”

Go in strength my friends.

~ • ~ • ~ • ~ • ~ • ~
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:

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.

Tuesday, September 23, 2014

Free Kindle Download of Fall Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series is coming Soon

Fall is here, but the "revised edition" of Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, FALL DEVOTIONS has not cleared the editor’s desk just yet. When that happens, we will offer a free download for the Kindle EBook version. The latest version has expanded information on some topics and room to take notes (the later being something our readers asked to have. 

Stay Tuned

Most Helpful Customer Reviews

Very helpful By Cecily T. on November 20, 2012
Format: Kindle Edition
I already bought the earlier book, "Integrative Therapies for Fibromyalgia, Chronic Fatigue and Myofascial Pain", so I got this on the recommendation of my pain specialist. It's nicely done and very helpful. The authors give suggestions, assignments and advice on a page per day basis. I like the format because I can focus on one thing at a time to help myself with my chronic pain condition. I can also go back and review information and rate my progress. I think this is a good tool for participating in my treatment

Helps add new perspective to each day! By Amazon Customer on January 7, 2013
Format: Kindle Edition
This is a great book, simple and effective! When you live in pain it's easy for the world to seem like it's falling apart. Waking up each morning in pain doesn't really help your focus, other than focusing on the pain itself and then building our day around the pain. It seems that we forget about all of the life that is going on around us and what it has to offer. This book is a reminder of all that life has to offer when you're losing focus. The book is well-written and easy to read. +1 for anyone needing help with kickstarting their days.

A good addition to your fibro library By Daily Reader on January 7, 2013
Format: Kindle Edition
Fibromyalgia is a multi-systemic disease that requires a mutli-faceted approach to treatment. This book is a wonderful addition to any fibro library, because it allows the fibro patient to take control of their own health. And the more you can do for yourself, the better you generally will do. Kevin White, MD, PhD Award-Winning Author of Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

Great Book!!! By AKR on January 8, 2013
Format: Kindle Edition
This book was very informative and helped me in so many ways as i am living with chronic pain. I am so thankful for the help this book has given me and I look forward to the next book. Thank you!!

Inspiring !! By Ronda Blacker on November 20, 2012
Format: Paperback Verified Purchase
This is an "uplifting" book that is well written. I even followed the author's suggestion and wrote my own poem !

Read more about Celeste here.

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, WINTER DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version, here
Amazon UK, here
Amazon Canada, here
Barnes and Nobel here

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. (Vermont: Healing Arts Press, 2010).
Available from Inner Traditions: Healing Arts Press here and in all major online retail stores.
Amazon in paperback here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here

Nook Book here

Saturday, September 20, 2014

Part Three – The Future for Treating Chronic Pain by Celeste Cooper

In Part One and Part Twowe read about the history of medicine, the human instinct to relieve pain, and the holistic approach. So, what could the future hold?

In the days and years ahead, we will see information sharing between pain care providers and patients as a welcome opportunity. We will be partners in investigating new concepts and applications of therapeutic modalities. Our provider will be the leader, the steering wheel, and the patient will be the vehicle. Both will work together to keep the chassis from falling apart and the engine running smoothly.

The future offers hope. Treatment options that fit within our own moral framework will be available. When all other options have been exhausted, neither provider nor patient will be judged for their choice for minimizing pain. We know that one in seven to ten people will exhibit addiction/abuse behaviors, one of those could be us, but our providers will be acutely aware of how to identify risk and resources will be available and affordable to all. Long-term studies on the effectiveness of opioids, medical marijuana, and other centrally acting agents, such as antidepressants, and anti-seizure medicines will be available. Providers and patients will be informed and improved patient function will be the yardstick by which we measure all things.

"Spirituality is a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life."

~The National Cancer Institute

Care plans will include assessment and education for healthy coping strategies, assessment of our support systems, and our providers will undergo education for meeting our spiritual needs—theirs and ours. (See Part Two.)  Integrative medicine, which includes both traditional and
complementary medicine, will include therapies such as active release therapy, acupuncture and ultrasound guided trigger point injection and will be available across the United States. Physicians will learn how body kinetics and the myofascia play an important role in chronic pain. And, just like water in a gas tank causes engine malfunction, providers and patients will understand the effect of nutrition on our general health, so we can expect referrals to nutritionists when needed. Massage, acupuncture, acupressure, QiGong, warm water therapy, classes for meditation, biofeedback, and movement therapies (such as Tai Chi and Yoga) will be front and center. We will be seen as human beings and will be respected for input in our care. Last, but certainly not least, all helpful therapies will be covered by our insurance providers and will be available to everyone, not just the affluent.

Our perceptions will shift from a “healthcare system” to what the Center for Practical Bioethics calls “a learning healthcare system.”  Modern informatics will allow access to our data with the goal of improving outcome, and benefit/risk analysis will be individualized.  As discussed in Part One, we will “look up”  and we will no longer fall into the abyss of usual thinking. All those present in the modern medicine model will admit we don’t have all the answers and will exhibit a willingness to open their mind to new possibilities. We will be fearless.

“Leaders are visionaries with a poorly developed sense of fear 
and no concept of the odds against them. 
They make the impossible happen.”
~Dr. Robert Jarvik
(Inventor of the first permanent total artificial heart.)


In this partnership, we will open our minds and hearts to new possibilities. Our healthcare provider will lead the movement for patient centered care by embracing the power of communication, trust, compassion, and touch. We will work together in learning how the mind affects the body and we will join hands as facilitators to share the news on this phenomenon. We will all play a pivotal role in the way pain is perceived, judged, and treated  as set forth in the Institute of Medicine report, “Relieving Pain in America.” What we do today to change our perceptions will affect the future of pain care for the 100 million Americans who suffer daily.
This is not the end; it is only the beginning.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

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

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

Tuesday, September 16, 2014

Is the prevalence of joint hypermobility purely a coincidence in CFS and FM? by Celeste Cooper

Shared by ProHealth is Dr. Peter Lowe’s assessment of joint hypermobility in chronic fatigue syndrome.

Is The Physical Examination Normal in CFS? Part 2: Joint Hypermobility, here.

As you will see, I too made this connection in our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (rated in the top 100 books on Diseases & Physical Ailments on Amazon in 2013) if you read more about joint hypermobility and Ehler’s Danlos Syndrome on my website here. 

How coincidental could this be?

Another study suggests this phenomenon goes undiagnosed in irritable bowel syndrome, a common comorbid disorder to fibromyalgia, which often overlaps with CFS.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q.. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. [Jan 15 Epub ahead of print.]

“Many upper and lower GI symptoms increased with increasing severity of JHS phenotype. Upper GI symptoms were dependent on autonomic and chronic pain factors. JHS is common in GI clinics, with increased burden of upper GI and extraintestinal symptoms and poorer quality of life. Recognition of JHS will facilitate multidisciplinary management of GI and extra-GI manifestations.”

French investigators noted some stark realities in fibromyalgia patients.

“Some patients suffering from fibromyalgia present with clinical signs and alterations in the histopathology, immunohistochemistry and ultrastructure of the dermis similar to the Ehlers-Danlos syndrome, hypermobile type (EDSH). Some types of fibromyalgia possibly represent an undiagnosed EDSH.”

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

I can only speak from what I found in my literature review for the 434 page book and my own personal experiences. A stark reality for me is that my own skin is that of someone on long term steroid therapy, but I don’t even tolerate steroids. My wounds heal so slowly that one of my doctors said I should always have a wound care specialist. My skin connective tissue tears like paper and bruises from a feather touch. I have had four shoulder surgeries, one complete reconstruction because it would not stay put, and the other three because of tendon and cuff tears. My hips still pop in and out at will, only contributing to fall risk and aggravation and development of more trigger points, piriformis and sacroiliac pain, and hip bursitis. I have suffered many severe joint sprains throughout my life. I can still put my hands flat on the floor and my therapists are amazed at my flexibility in light of my age and the severe myofascial pain syndrome. And yes, before arthritis, I was what many referred to as double-jointed.

Are our doctors giving this connection serious consideration? 

Could this explain why so many FM and CFS patients 
are susceptible to myofascial pain syndrome?

Keep up the good work Dr. Rowe and fellow astute investigators. A physician should never underestimate the value of a skilled physical exam. We salute you.

~ • ~ • ~ • ~ • ~ • ~

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

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 

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.  

Saturday, September 13, 2014

Part Two – Chronic Pain in the Present – The Question by Celeste Cooper

In part one, you read about the historical evolution of patient care and the value of “looking up.” In this segment, we will explore how our provider asking certain questions, in a certain way, can open the floodgates of information that might improve our care.

Every individual has a primal instinct to preserve life and avoid pain. Our ancestors either found a way to treat their pain, live with it, or not. Things are not so different today other than the availability of advanced diagnostic tools and interventions. Despite this, the Institute of Medicine report—“Relieving Pain in America”— states people living with chronic pain are judged, discriminated against, and underserved. Most staggering of all is that approximately 100 million Americans presently live with chronic pain.

No doubt, chronic pain, and other illnesses that can accompany it, has an impact on society. However, the impact is not limited to society. We, as patients, are also affected. Scrutiny by government agencies and non-reimbursement for integrative treatments are two things that make it difficult for our providers to develop care plans. Wouldn't it be wonderful to have a therapeutic massage, acupuncture, or other integrative therapies we know help reimbursed by insurance? At the The Center for Practical Bioethics symposium, Patients as Teachers, we learned a great deal about ethical dilemmas associated with untreated and undertreated pain. There are people who want to make a difference. The wheels of progress may turn slowly, but they turn.

“Continued emotional support is vital to the functioning of a family member 
in pain and to aiding in his or her rehabilitation.”

At the Pain Action Alliance to Implement a National Strategy, where you can now participate by clicking on the “Join” square here and scrolling down to the bottom of the page, we hope to see a movement toward a moral imperative for patient centered pain care. It doesn't just begin with caring organizations, it also begins with the willingness of patients to become involved. We need to give a voice to our pain, raise media attention from our perspective. I don’t know one person living with chronic pain that doesn't want to see a change in the way their pain is perceived, judged, and treated.

Nearly every one of us experiences medication side effects, medical devise failure, or invasive procedures that come with their own risks. We live with the hope that the next thing will get us back on our feet or minimize our pain to a dull roar. We are optimistic when we walk through clinic or hospital doors, but we don’t always leave that way. We become complacent because our provider doesn't listen, or so it seems to us. We understand our providers become frustrated, because we do too.

This brings me to the type of questions every provider should ask. Each is simple and reflects the climate of healthcare in the 19th century that you read about in Part I, A Look Back and Look Up.

"How is your family?" “What do your friends do to support you?” Open-ended questions such as this should be answered with honestly. It is important that our provider understands not only how pain affects us physically. Many of us have no support at home, which makes us feel isolated and alone. We become angry because we have lost control over our lives, and sometimes, we lose even more, our dignity, and our relationships with others,. We need and deserve this balance in our lives. Speak up.
Ask your provider for resources on how to cope. If they don’t have them, talk with them about why it’s important to you. It will not only remind your provider you are a human being with the same needs they have, it may help them change their personal perspectives for making positive change in their practice. Research tells us these approaches influence how we cope emotionally, mentally, and spiritually, which improves they way we cope with physical pain. When we find balance, we regain control.

Management of chronic pain takes an integrative, patient centered approach emphasizing communication, patient and provider education, and ethical preservation of our patient right to choose. These goals are a moral imperative. So, next time you have an appointment with your provider ask yourself, “What one question would I like my provider to ask?” If they don’t ask, simply say, “I wish you would ask me about…” Then ask for resources, you deserve them.

What could the future hold for pain care? That’s coming next.

~ • ~ • ~ • ~ • ~ • ~
Updated Post Script

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

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

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

Saturday, September 6, 2014

Part One - A Look Back and Look Up: Could history be a guide for treating chronic pain? by Celeste Cooper

The original article will appear in the September issue of Kansas City Nursing News as a contributing columnist to honor pain awareness month. It is rewritten from a patient perspective.

This is the first article of a three part series to kick off “Chronic Pain Awareness.” We will explore the history of the patient-physician relationship, its effect on trust, and question how specialized medicine and advanced technology has made an impact on patient care.

As a registered nurse turned author, advocate, and patient, I have worn many hats. I have also seen many shifts in the delivery models of healthcare. However, the biggest pendulum swing affecting me is the treatment and judgment by others as a chronic pain patient. I went from a high functioning nurse collaborating on patient care to healthcare consumer. I have felt judged and I have been treated differently by some. I have thoughts on why this might be. 

In American history, the local doctor treated everything. Patients valued their doctor as the authority. It didn't matter if we knew our blood pressure, because patients trusted their doctor to know what to do, but more than that, this trust was mutual. Because of this, we felt comfortable sharing our experiences including how living with chronic pain affected all aspects of our lives, and our doctor listened. Our doctor knew how chronic pain was affecting our families, our ability to socialize, our emotional and spiritual stability, and the financial impact having chronic pain created for us. Our doctor felt obliged to help us lead the most productive life possible. Physicians weren't required to get the government’s permission to prescribe medication and other treatments, and if they saw we were abusing our medications, they spoke us, because they cared about this too. They didn't judge because they knew who we were before chronic pain. Today, it is unlikely the doctor treating our pain knows us at all.

With time and the human desire to explore, make things better; find a vaccination for polio, for instance, the delivery of medical care has morphed into a system of specialties and advanced technology. The days of bartering or trading services and patients feeling responsible for making sure their physician was also cared for has become outdated. So, how did we go from historic trust and physician-patient familiarity to distrust and judgment? It seems out of place to me and against the grain of what I learned in nursing school and from my life’s lessons. Living through this shift in attitude is probably the hardest thing for me to accept, because I have seen different days in my more than six decades of life.

Humans, as do animals, interact and recognize non-verbal cues by establishing eye contact. So I am disturbed that some healthcare providers no longer look at me while I talk. Instead, they are busy looking at, and documenting, on their laptop. Would the local doctor of the 19th century, the one who would take a dozen eggs for their service, ever consider it respectful to bury their head in a book while their patient was sharing their innermost fears? Would any of us be able to communicate and foster trust with someone who doesn't look us in the eye?

Studies show there is judgment affixed to having or caring for someone in pain. Can we, as patients, and our providers look back and learn? Can we all simply “look up?” (See “Communication with Your Healthcare Provider, here.) As a patient, I want to feel the warmth one can only experience through compassion, touch, and trust. I want to feel the security that is fostered when my physician comes eye to eye with me, smiles, or reaches out to touch me in a gesture of "I care." I want to feel secure. I want a mutual exchange of information, and I want my doctor or nurse to explain things in a way I understand.

We must embrace technology, but not at the expense of becoming less human. Would Florence Nightingale think we have advanced? Would she believe we have to sacrifice eye contact or compassionate behaviors in order to appreciate the advancement in technology, specialization of medicine, or communication and trust?

As patients, we have made some changes too, but I suspect our anger, our distrust, and our own attitudes have evolved as a result of poor communication and the aloofness technology has infused into our lives. How can we effect change in our relationships with our providers? Can we simply ask our healthcare provider to see us as a fellow human being, a member of the same team? We also have ownership in this process. We too should keep those few minutes with our physician sacrosanct and return our cell phones to our pockets, treat our appointment time as we would our time with an old friend. CAN WE simply—


See tips for effective communication to learn more about how we can foster our relationship with our healthcare provider.

In the next segment, (here) we will explore how your healthcare provider can gain a plethora of valuable information that will give them a better understanding on how chronic pain affects your life.

Side Note:
Advocates are coming together to address the needs of our society, in particular, the needs of approximately 100 million Americans who live in chronic pain. The PAINS Alliance, an initiative of the Center for Practical Bioethics believes that the only way to realize transformation in the way pain is perceived and treated in America is "to combine the collective power of organizations and those they serve — people living with pain — in a sustained effort to improve the delivery of pain in America." I am pleased to be a participant in this most important, energetic, and patient focused alliance of influential organizations and individuals, and now you can be too, here . 
This collective and integrative group has a mission to advocate for and act collectively to actualize the recommendations set forth in the Institute of Medicine (IOM)  report “Relieving Pain in America, A Blue Print for Transforming Prevention,Care, Education and Research. Those who participate believe it is our vision that all Americans living with pain will have access to integrated pain care consistent with their goals and values. You can now join as an individual . 

“Continued emotional support is vital to the functioning of a family member 
in pain and to aiding in his or her rehabilitation.”

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

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

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

Monday, September 1, 2014

The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper

In an effort to raise awareness for chronic pain awareness, and as fibromyalgia expert at Sharecare, I felt the best way to honor September would be share what I have learned about the newest diagnostic criteria. I think it is important for you to know why I believe this criterion is the most comprehensive and easiest to use.


Those of you who follow me know of my concerns and my correspondence with the editor of Arthritis Care and Research and the National Institute of Health regarding the preliminary (Wolfe, et al., 2010) and modified criteria (Wolfe, et al., 2011).

My biggest concern is the criteria’ (Wolfe, 2010, 2011) states that fibromyalgia patients complain of “non-specific disease related symptoms” despite literature suggesting otherwise. Comorbid conditions can and do exist, and as pointed out in the "Alternative Criteria" (Bennett, 2013) having a painful comorbid disorder does not exclude fibromyalgia. In the case of symptoms compatible with myofascial pain syndrome, patients will be denied helpful treatments for this peripheral pain disorder that can keep the fibro brain in wind-up. Ignoring that periodic limb movement, and bruxism have a central component and peripheral component is neglectful. The list goes on. You can review more here. When our symptoms are described as “non-specific disease related symptoms,” we are at risk for being diagnosed with a somatic symptom disorder (SSD), a psychiatric diagnosis once called hypochondria. You can learn more about this in the article Marla Silverman and I co-wrote “Who is the WHO and Why Does It Matter to You? here. 

Dr. Wolfe stated in an interview that up to 40% of FM patients (significant) could fall into the DSM-5 diagnostic manual for psychiatrists. I am unsure what criteria he was using when he came to this conclusion. This is concerning for several reasons, the patient will not get the appropriate treatment (making them seem difficult to treat), insurance carriers could deny coverage for certain tests or impose limitations, and data collection that relies on diagnostic codes will be greatly skewed and could affect research results and funding.

While the 1990 American College ofRheumatology criteria  helped Identify some patients with fibromyalgia, it was never intended to become the diagnostic tool it became. Once it was put through the rigorous trials of clinical use, we found that not all patients had 11 of 18 tender points and tender points can be located in different areas, they are wide-spread. Since 1990, research has advanced and we know that even though tenderness and a proper physical exam are still important, there is a great deal more to diagnosing fibromyalgia.

It’s exciting that physicians, researchers, and other advocates are taking a closer look. I have corresponded with Dr. Frederick Wolfe, Dr. I Jon Russell, and Dr. Robert Bennett over the past several years. My own literature review for our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author Jeffrey Miller, PhD), has had an impact on my perceptions of how fibromyalgia should be diagnosed and treated, and I have bias towards the 2013 Bennett, et al. criteria.


Objectives of the “Alternate Criteria for Diagnosing Fibromyalgia,” research led by Robert Bennett, MD and the resulting paper, fresh off the press in the September issue of Arthritis Care and Research, include evaluation and comparison of the “modified preliminary diagnostic criteria” (Wolfe et al., 2011) and the 1990 criteria. The alternative diagnostic criteria (Bennett, et al. 2013) has been scientifically evaluated and compared to the “modified preliminary diagnostic criteria” (Wolfe et al., 2011) for accuracy and usefulness in a clinical setting.

From here on:
  • Bennett criteria will be referred to as 2013AltCr
  • Wolfe criteria will be referred to as the 2011ModCr
  • 1990 ACR criteria will be referred to as 1990Cr. (You can review the criteria on my website here.) 

Keep in mind that Dr. Bennett and Dr. Wolfe are the lead investigators, but they did not function alone. All investigators should be recognized for their hard work.

I am not a statistician, but I do like to read expert’s conclusions. I have made every effort to interpret the information here correctly and appreciate Dr. Bennett’s help. If you are not a research buff, then I suggest you fast forward to The Bennett, et al. Alternative Criteria (2013AltCr ) in Action.” You will find examples there.

THE BENNETT, et al. STUDY  – 2013AltCr

A total of 321 patients aged 18 years and older were evaluated. Of these 135 participants were diagnosed with FM using the ACR 1990 criteria, and the other 186 participants had 16 other common chronic pain problems. The study included 242 females and 79 males. “Major depressive disorder (MDD) was based on DSM-IV. All other diagnoses were based on published guidelines."

This study included a cross section of chronic pain disorders, varied geographical locations, and a sampling of clinicians.


Data was collected using five standard sets of questions:

1.  Demographics
2.  The 2011 Modified Criteria for FM (2011ModCr) – Wolfe et al. study
3.  The Symptom Impact Questionnaire (SIQR)
4.  The Short Form 36 (SF-36)
5. A 28 anatomical location inventory 

(1) Demographics considered age, gender, educational level, work status, marital status, number of years with chronic pain, and other chronic pain disorders.

(2) 2011ModCr - The Wolfe, et al. Study – A patient satisfies the Wolfe, et al. 2010 criteria, which was modified in 2011, if the following 3 conditions are met: 

1. Widespread Pain Index ≥ 7 and Symptom Severity Score ≥ 5 or Widespread Pain Index between 3–6 and Symptom Severity Score ≥ 9.
2. Symptoms have been present at a similar level for at least 3 months.
3. The patient does not have a disorder that would otherwise sufficiently explain the pain. (more about this later).

Widespread Pain Index (WPI ): The number of 19 areas in which the patient had pain over the last week. 

1. Jaw, Lt.
8. Shoulder girdle, Lt.
14. Upper Back
2. Jaw, Rt.
9. Shoulder girdle, Rt.
15. Lower Back
3. Neck
10. Chest
16. Upper Leg, Lt.
4. Upper Arm, Lt.
11. Abdomen
17. Upper Leg, Rt
5. Upper Arm, Rt.
12. Hip (buttock, trochanter), Lt.
18. Lower Leg, Lt.
6. Lower Arm, Lt.
13. Hip (buttock, trochanter), Rt.
19. Lower Leg, Rt.
7. Lower Arm, Rt.

WPI  = (0-19)

Symptom Severity Score (0-12): The Symptom Severity Score (SSS) is the sum of the severity of the 3 symptoms (fatigue, waking unrefreshed, and cognitive difficulties) over the past week. (0-9), plus the sum of the number of the following symptoms occurring during the previous 6 months: headaches, pain or cramps in lower abdomen, and depression (0–3).
Severity Score:
0 = No problem;
1 = Slight or mild problems; generally mild or intermittent
2 = Moderate; considerable problems; often present and/or at a moderate level
3 = Severe; pervasive [all encompassing], continuous, life-disturbing problems
1) fatigue   (0-3) 2) waking unrefreshed (0-3) 3) cognitive symptoms (0-3)
1) headaches (0-1)
2) pain or cramps in lower abdomen (0-1)
3) depression (0-1)
SSS = (0-12)

The data resulting from the Bennett study (2013AltCr) suggests the 2011ModCr widespread pain index (WPI) excluding the symptom severity score was more accurate than a combining the WPI and the SSS. 

(3) Symptom Impact Questionnaire (SIQR) (Bennett, et al. 2013AltCr). I encourage you to look at the FIQR. You can find a calculator and print a copy for your provider, here.

Note: The SIQR was based on questions pertaining to the last seven days and was used to gather data. The SIQR is identical to the fibromyalgia impact questions (FIQR) with the exception that the word FM was excluded in the three domains, 1) function, 2) impact, and 3) intensity of symptoms so the same tool could be used to assess patients with non-FM disorders.

(4) The Short Form Health Survey 36 (SF-36). 

The Short Form (36) Health Survey is a patient-reported survey of patient health. The SF-36 is a measure of health status and an abbreviated variant of it, the SF-6D, is commonly used in health economics as a variable in the quality-adjusted life year calculation to determine the cost-effectiveness of a health treatment. The original SF-36 came out from the Medical Outcome Study, done by the RAND Corporation. Since then a group of researchers from the original study released a commercial version of SF-36 while the original SF-36 is available in public domain license free from RAND. Wikipedia - 

2013AltCr were developed from the same data set using research analysis. 

(5) Pain location inventory (PLI) – Assesses 28 locations and includes:

1. Number of pain locations (0-28). Pain without physical assessment.
2. Intensity of pain at 28 locations using the 0 – 10 scale “no pain” and “extremely painful.”
1. Number of tender locations (0-28). Tenderness on palpation.
2. Intensity of tenderness when touched or pressed using the 0 – 10 scale, "no tenderness” to “extremely tender." 

The Bennett, et al. Alternative Criteria (2013AltCr ) in Action.

Following is an example of how the alternative criteria questionnaire can be used to assist in the diagnose fibromyalgia. It is presented as an example so you can see how it works.

Pain location inventory (PLI) - 28 areas

Directions: Select from the 28 locations where you have experienced persistent pain during the past 7 days. Your score will be between 0 and 28.

For the example the locations are highlighted.

1.  Neck
8.  Right knee
15. Left hand
22. Right arm
2.  Left upper back
9.  Left jaw
16. Right ankle
23. Left hip
3.  Right wrist
10. Left lower back
17. Front of chest
24. Right foot
4.  Left thigh
11. Right hand
18. Left shoulder
25. Right upper back
5.  Right jaw
12. Left knee
19. Right hip
26. Left arm
6.  Right lower back
13. Mid- upper back
20. Left ankle
27 Right thigh
7.  Left wrist
14. Right shoulder
21. Mid- lower back
28. Left foot

Add the total of highlighted symptoms.

PLI Total + __20__ (0 – 28)

10-item SIQR symptoms:

Directions: For each of the following 10 questions, check the one box ( for the ease of this example a circle is highlighted) that best indicates the intensity of the following common symptoms over the last 7 days. 

1. Pain                                    
    No pain            ⓪①②③④⑤⑥⑦⑨⑩   Unbearable pain

2. Energy
    Lots of energy   ⓪①②③④⑤⑥⑧⑨⑩   No energy

3. Stiffness
    No stiffness       ⓪①②③④⑤⑥⑦⑧⑩    Severe stiffness

4. Sleep
    Awoke rested   ⓪①②③④⑤⑥⑦⑧⑨    Awoke very tired

5. Depression
    No depression   ⓪③④⑤⑥⑦⑧⑨⑩    Very depressed

6. Memory Problems
    Good memory   ⓪①②③④⑤⑥⑦⑨⑩    Very poor memory

7. Anxiety
    Not anxious       ⓪①④⑤⑥⑦⑧⑨⑩    Very anxious

8. Tenderness to Touch
    No tenderness   ⓪①②③④⑤⑥⑦⑧⑨    Very tender

9. Balance Problems
    No imbalance    ⓪①②③④⑤⑥⑧⑨⑩    Severe imbalance

10.Sensitivity (Sensitivity includes loud noises, bright lights, odors and cold)
    No sensitivity    ⓪①②③④⑤⑥⑦⑨⑩    Extreme sensitivity

Total the score by adding the degree of severity 0 – 10 for each symptom (0-100) and divide the sum by 2 to obtain the SIQR symptom score.

Example: = 70 (out of 100 possible) divided by 2 = 35

SIQR __35__

Note: By adding the SIQR to the score PLI, it increased the specificity of the 2013AltCr from
72% to 80% and yielded a correct classification of 80%.

A patient fulfilling the following guidelines has a high likelihood of having FM:*

1. The symptoms and pain locations have been persistent for at least the last 3 months
            Example Yes

2. Pain location score is ≥ 17
            Example 20

3. SIQR symptom score is ≥ 21
            Example 35

Example meets criteria for fibromyalgia diagnosis.

A comparison of the 2011ModCr with the ACR 1990Cr provided:
  • Diagnostic sensitivity = 83%
  • Specificity = 67%
  • Correct classification = 74%.

2013AltCr were derived from the 10-item symptom score from the SIQR symptoms
and the 28 PLI as shown in the example:
  • Diagnostic sensitivity = 81%
  • Specificity = 80%
  • Correct classification = 80%.


Comparing the 2011ModCr to the 2013AltCr we don’t see much difference in sensitivity, a hearty improvement in specificity, and a moderate improvement in classifying fibromyalgia correctly. Overall, the subjective questionnaire part of the 2013AltCr outperforms the 2011ModCr and as you can see if you applied it to yourself, it is easy to use.

It is important to remember, as pointed out in the article:

*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 meet the 1990Cr.]

*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. The 2011ModCr 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.]


The 2013AltCr (Bennett, et al.) considers three diagnostically useful symptoms that were not identified in the 2011ModCr (Wolfe, et al.): stiffness, tenderness to touch and environmental sensitivity. The AltCr identified more patients with FM than did the 1990Cr, yet it identified closer to the 1990Cr than the 2011ModCr. I suspect that is because both the 1990Cr and 2013AltCr both require a physical assessment for tenderness. Tenderness cannot be assessed without applying a certain amount of pressure to the patient, not to mention that a skilled examiner can only assess rebound tenderness, non-verbal clues, such as wincing or guarding, and other symptoms that are important to assess, such as listening for hyperactive or diminished bowel sounds. These things are considered objective data, findings by the examiner. The 2013AltCr includes a scientifically evaluated questionnaire to aid in a diagnosis, yet does not insinuate that it alone is sufficient.

The demographics of 2013AltCr were “fairly typical of chronic pain patients.” However, the investigators found a prevalence of males at 34% vs the 31% identified in the ModCr. The AltCr found that females and males had similar PLI scores, but differed on the calculated sum of pain and tenderness and males reported less pain and tenderness intensity. This is important because research has shown that males with FM report their symptoms differently, and this could provide “a potentially useful discriminatory variable in fibromyalgia questionnaires.”

The investigators discussed the importance of understanding that most FM patients also have another chronic pain disorder. The 1990Cr suggests ONLY 13% DO NOT. Therefore, it is not necessary to “exclude” other pain disorders (point 3 of the 2011ModCr); to the contrary, they should be included. 

"Fibromyalgia is NOT a diagnosis of exclusion."

Also of importance is that “the presence of a non-FM related pain disorder increased the total SIQR score by approximately ten percent; however having a related medical disorder did not significantly affect the total SIQR score. Recognizing this will help the physician and nurse practitioner give the patient the best care possible, and hopefully reduce to stigma associated with FM.


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]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB: The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken) 62(5):600-10, 2010 May.

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 38;1113-1122, 2011.

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

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 

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.  

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