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Thursday, September 24, 2015

The Painful Truth: A Book, a Documentary,a Meeting with Lynn Webster, MD

I recently had the pleasure of speaking with Dr. Lynn Webster for a second time, the first being at the gala and symposium Healing What Hurts: The Politics of Pain, which was also organized by the Center for Practical Bioethics for their initiative, the PAINS Project.  You see, before he talked to a full auditorium of people eager to hear what he had to say, he visited in private with our local patient/citizens leadership group, Relieving Pain in Kansas City. He wanted to get to know us on a personal level, because frankly, that’s how he rolls.
The Painful Truth: The Book

This gathering of providers of all pain care disciplines, patients, medical students, caregivers, and concerned citizens were going to hear about the journey of an internationally known pain specialist. We walked not in front or behind him, but beside him, with him, as we learned about his passion for healing an America that hurts from the stigma of chronic pain.

All those in attendance got a copy of his new book and as we were gathering, I noticed people were not merely leafing through their copy, THEY WERE READING IT! Stay with me and you will find out why.

Dr. Webster’s message is irresistible. He tells us The Painful Truth is not a self-help book, but it is a helpful book. I am in awe of willingness to share his personal stories, his motivation for being an advocate, researcher, author, and physician with a dream to make a difference. He underscores the importance of heart, listening, and understanding that pain is more than a symptom of disease. He wants everyone across America to know the benefits and risks of opioid prescriptions, the cultural attitudes, the role caregivers take in our lives and most of all—the hope of a fulfilling life despite pain. 

 The Painful Truth Book Trailer

The Painful Truth: The Documentary

Dr. Webster teamed up with Craig Worth to produce a documentary. Together this physician and New York and Los Angeles Emmy Award winner and former network correspondent documented important and truthful messages from patients and the many people who touch their lives in some way. The documentary itself is a testament to the spirit and determination this advocate has for people living with pain, the seriousness of not only untreated or undertreated pain and suicide, but also addiction.

Dr. Webster and his wife Holly funded the documentary (of the same title) because they wanted a raw, unfiltered portrayal of chronic pain, a guttural reaction that would create change in the perceptions associated with people living with pain, and those who care for them. Though different in some ways, the theme is the same as the book…

There is a difference between healing and curing.

The Painful Truth Documentary Trailer (worth every second)

The message is one of hope for a better America, one with compassion for fellow human beings, an example the rest of the world can lean on.

Physician – Patient Encounter

Dr. Webster told us the first thing he asked new patients was “What do you want [from pain care]? The answer was always the same, the same words he continued to hear while doing the documentary, one that resonates across this nation...

“Doc, I just want my life back.”

He also shares with us that his patients succumb to a primal release of emotions when he says these three words, “I believe you.” You see, he found that no matter our life’s experiences, ethnic background, age, or religious or cultural beliefs—we all share something—the need to be validated. He knows chronic pain is a thief that robs us of our self-esteem. Sadly, there is a historical—albeit irreverent—concept that people in pain are weak. Some of us are stuck in a grieving process because the healing process begins with feelings of trust and respect; something Dr. Webster admits doesn’t happen often enough. Dr. Webster is a leader in his field because of his education and experience, but mostly because he has heart and he knows how important those three words are.


* The documentary will be released later this year, slightly behind its original production schedule.

In Conclusion

I wake up every morning to pain. On average, three mornings of seven begin with what I call my 4 a.m. migraine reveille. I stagger on swollen feet to where I keep my pain medicine of need. My arthritic hands fumble with the lid as I coax them into action using loving words like, come on you can do it, and sometimes—though I don’t like admitting it—expletives about the packaging. Some days that is the only trip I make to that area of my world, other days, I visit more often than I wish. But I am always grateful for the many tools that help me function. I am grateful to have a doctor willing to work with me without making me jump through a hundred hoops. He understands the unpredictability of the many pain sources I face. He understands that I have no control over the cause of my pain, but I do have control over knowing what works best for me. Many are not as fortunate as I am.

I suppose pain defines who I am, but in different ways. Because of pain, I live a life interrupted. But, I am determined to live a full life, a grateful life that respects my capabilities. I have learned not to take things for granted; I appreciate the opportunity to meet the many advocates and heroes in my life. I am inspired by each, and every, person who is touched in some way by chronic pain.

So you ask, “What does this have to do with The Painful Truth?” It has everything to do with it. Reading The Painful Truth reminds me that I am not on this journey alone. I now begin each day by reading this book because it provides me with the other medicine I need, inspiration—a feeding of my mind, my spirit, and my soul—a reminder of the many encounters I have had with champions, because I live with chronic pain. This is MY painful truth.

Those of you who follow me on social media know that for many years my signature has been, “In healing and hope, Celeste”. The Painful Truth reminds me of the powerful message my signature line was intended to send. Healing is not the same as curing, and when we hold these words in our hands, in our mind, and in our hearts, we begin to live a satisfied life.

If you are struggling to find your place, if you are still working through your grieving process (been there), read this book. Every one of us needs to hear those words, “I believe you.” Begin the healing process; it will color your world with hope. The landscape of your existence with pain will begin anew.

Learn more about the book on The Painful Truth book website

“Chronic pain affects 1 in 3 Americans and exerts more than a $600-billion drain on the economy annually. It is the largest invisible epidemic in the land. Having treated thousands of patients with chronic pain-often when they were at their most vulnerable-Lynn R. Webster, M.D., continues to believe there is hope. Ultimately, a cure for pain will require more research, better therapies, and improved policies. But healing can begin today with a broad-based approach to treatment, including compassionate support from those closest to the ones who are hurting. The Painful Truth is an intimate collection of stories about people living with disabling pain, their attempts to heal, and the challenges that we collectively face in helping them live meaningful lives. As a physician who has treated people with chronic pain for more than thirty years, Dr. Webster reveals the difficulties that patients face in dealing with chronic pain in a society that is often shamefully prejudiced against those who are most in need of our empathy. He shares how such biases also affect medical professionals who treat patients with chronic pain.” Find The Painful Truth on Amazon   

In healing and hope, Celeste

Tuesday, September 22, 2015

The Stanford Chronic Pain Self-Management Program: An Interview with Workshop Leader Orvie Prewitt

I cannot think of a better way to wind down “September Awareness of Chronic Pain” than by sharing with an interview I did with Orvie Prewitt on the Stanford Chronic Disease Self-Management Program.

Setting goals when living with chronic pain can be difficult and rewarding. Orvie Prewitt knows this first hand, and she knows what a good self-management program can do to help us move forward in our lives.

Orvie is the “Program Coordinator” for the Kansas City Regional Arthritis Center (KC-RAC). The KC-RAC is one of Missouri’s seven Regional Arthritis Centers, which allows the State of Missouri to provide programs and services through the National Council on Aging. No other state utilizes RACs to provide programs/services through funding from Prevention as well as the National Council on Aging and the Centers for Disease Control. It would be wonderful if the CDC will also support the Stanford Chronic Disease Self-Management Program because it would be a great fit for their arthritis program funding. Pain is at the top of the list of symptoms for arthritis.

An Introduction to the Stanford Program

 “I believe the Stanford Chronic Disease Self-Management Program (CPSMP) is exceptional because it has something for everyone. Tips, tools, techniques, and more are presented, and everything can be modified to each participant’s tolerance level. I know chronic pain can be overwhelming, sometimes to the point of paralyzing how we cope day-to-day, hour-to-hour, or even minute to minute. But we have choices, even on those days when we convince ourselves we have none. We are presented with basic choices every day, but we don’t give them due credit. One of those choices is whether or not we will get out of bed.”   

~Orvie Prewitt

About Orvie’s Connection with the Program        

Orvie is a Trainer/Leader for both the Stanford ChronicDisease Self-Management Program and the Diabetes Self-Management Program. She originally took the Chronic Disease Self-Management Program herself, so she knows of what she speaks from a unique perspective. Her personal goal as a “peer leader” is to help us understand we can achieve a better quality of life despite living with chronic pain.

Orvie Tells Us about the Program

I asked Orvie for some specific information regarding the program, such as how it was developed and how it is evaluated.

From here on, we will refer to the Stanford Chronic Pain Self-Management Program as CPSMP.

The CPSMP was developed by Sandra LeFort, PhD, MN, RN in 1996 at McGill University in Montreal and that it was later updated at Memorial University, St. John's, Newfoundland, Canada, with Lisa Cardas, RN of Toronto. The CPSMP was developed in conjunction with Dr. Kate Lorig and the staff of the Stanford Patient Education Research Center.  In 2015, the program was revised for a second time and a new book, Living a Healthy Life with Chronic Pain, was written to accompany the program.
Stanford says a program must have evidence-based research showing it is effective before releasing it for organizations to use. In two randomized clinical trials funded by Health Canada and the Canadian Institutes of Health Research (CIHR) they found:

  • Participants had more vitality or energy, less pain, less dependence on others, improved mental health, and they are more involved in everyday activities.
  • They are more satisfied with their lives compared to those who have not taken the program.
  • Evaluation of the program across 10 pain clinics in Ontario, Canada found it to be beneficial for participants in terms of coping skills, education, and overall quality of life.
To date, the program has been delivered to hundreds of individuals with chronic pain.

Why the Program Works

Like other Stanford self-management programs, the CPSMP is led by a pair of peer leaders who understand because they too live health problems. Orvie says she learns something new every time she co-leads a CPSMP, because the program is very interactive and allows everyone to share with, and learn from, others.

She says there are seven topics for effective self-management of chronic pain, which must be strictly adhered to in the CPSMP.

  1. Techniques to deal with problems such as frustration, fatigue, isolation, and poor sleep
  2. Appropriate exercise for maintaining and improving strength, flexibility, and endurance
  3. Appropriate use of medications
  4. Effective communication with family, friends, and health professionals
  5. Nutrition
  6. Pacing activity and rest
  7. How to evaluate new treatments

“Self-management is a key component that
enhances the medical care we receive.”

A buddy system is started the 2nd session of the CPSMP. Orvie says she and her co-peer leader encourage participants to continue to communicate after the CPSMP. However, since it is a self-management program, Stanford will not allow Leaders to collect contact information to share. Someone in the group coordinates this, if desired. And, Orvie says the KC-RAC has found participants are staying in touch.

Workshop/Program Details

Like all the Stanford Self-Management Programs, Orvie says the CPSMP insures privacy according to HIPPA guidelines.


  • Are preset by the Stanford program 
  • Approximately two hours sessions
  • Once a week for six weeks


  • Living a Healthy Life with Chronic Conditions (book)
  • Moving Easy (CD)
  • Participants can keep materials for their home use

There is suggested reading between meetings, but it is not mandatory since this is a self-management class.


The cost to attend as a participant is dependent on the organization offering the program.


If you are interested in attending, becoming a peer leader, or facilitating a Stanford Chronic Pain Self-Management Program through an organization in your area, here is what you can do.                 

 “ I am constantly reminded I have a responsibility to be an active self-manager if I want to have the best quality of life possible. I find strength from others and it feels really good to see a participant have that “aha” moment when they realize there is something they can do, be it ever so small, to help themselves.”

Three words Orvie would use to describe her experience:
Informative — Thorough — Stimulating

~ • ~ • ~ • ~ • ~ • ~

"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.  

Thursday, September 17, 2015

6 Reasons You Want This Book If Your Live with Chronic Pain

The crisp air of fall is almost upon us, and for those of us who live with chronic pain that can mean many things. In an effort to help others and myself through the season of harvest and to have daily reminders of things I could do to enrich my life despite living with pain, the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series was born. I am grateful for my co-author Jeff Miller, PhD and the many people who have supported me by writing endorsements for the book, and for the many kind comments from our readers.

1  - 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 kick starting their days.

2 -  I purchased copies of this book (and the summer devotions book in the same series) and shipped them to my mother, who has lupus, and my mother-in-law, who has fibromyalgia. What a nice surprise and caring gesture, they thought. They found the daily devotions to be helpful in providing different ways of thinking about and coping with their pain. Mom is taking care of my dad, who has terminal cancer, and she said it helped her understand and deal with him better also. As a counselor, I appreciate the good mental health approach that the authors take. The book not only provides help for coping with physical pain but emotional pain as well.

3 - 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

4 - Working as a massage therapist we see and help to work with other health professionals to treat clients who deal with pain on a daily basis from varied sources. Finding a reference source like this that can help assist individuals to make constructive creative investment preforming motivating positive life change is a gift. Thank you for your hard work and dedication to a medical issue that leaves so many feeling passed over and unheard. I hope this series helps those in need to see that many caring hands and hearts exist to help light way toward happy, healthier living.

5 - 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!!

6 - This is an "uplifting" book that is well written. I even followed the author's suggestion and wrote my own poem !

It’s time to re-open your book in the series, 
Fall Devotions, and explore again.

Celeste is a patient, author, and advocate for all who live with chronic pain. Read more about Celeste, the table of contents, and endorsements inside the cover.

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain,

You can also read more about Celeste and her other books here.

Friday, September 4, 2015

Is Fibromyalgia a Psychosomatic Illness? Med Student Asks Celeste Cooper

I received a request from a medical student taking an abnormal psychology class. He wanted to know if I thought fibromyalgia was a psychosomatic disorder.

The Psychology Dictionary defines psychosomatic disorder as:
Psychosomatic disorders are those in which psychological factors play a major role in the origin or course of the disorder.

Following is my response

[Medical student,]

You are offering others a great opportunity to learn by writing on this topic. I hope to give you the information you need [regarding whether fibromyalgia is a psychosomatic illness or not]… I will answer your questions bluntly.

"Fibromyalgia is NOT a psychosomatic illness."

While talk therapy, biofeedback, mindfulness for any chronic illness is important for coping, it will not cure or even eradicate symptoms from a physical underlying disorder. This is also true for fibromyalgia. There are many people, including myself, who have been through extensive therapy with the hopes that we could find something to help our pain. My co-author began as my therapist. He assured me that I do not have a psychosomatic illness, and encouraged me to validate that with a psychiatrist, which I did, and it was found that I do not. 

The Right Diagnostic Criteria is Critical to Understanding Fibromyalgia

Unfortunately, Dr. Frederick Wolfe has done a great deal of damage to the fibromyalgia patient. He has touted his criteria for diagnosing FM as the American College of Rheumatology criteria. I wrote to the ACR on this and they tell me they have NOT endorsed Dr. Wolfe’s or anyone else’s criteria. See my blog, [The ACR Responds to My Inquiry on the Fibromyalgia DiagnosticCriteria—Should I Scream or Cry?]  It is my understanding that the ACR is publishing an erratum on this matter in an issue of Arthritis Care and Research.

Dr. Wolfe resurrected the antiquated notion that fibromyalgia is a psychosomatic illness with his research on prevalence offibromyalgia in the German community (Wolfe, et. al., 2013).  What you don’t know is that he took a validated tool for assessing severity of somatic symptoms, the PHQ-15 (Kroenke, et. al., 2002) and tweaked it.

Dr. Wolfe’s “short form,” called the PHQ-8, regarded:

  1. stomach or problems going to the toilet
  2. pain in the back
  3. pain in the arms, legs, or joints
  4. headaches
  5. chest pain or getting out of breath
  6. dizziness
  7. feeling tired or having low energy
  8. trouble sleeping

First, why are stomach problems and problems going to the toilet lumped together? The PH-15 divides these somatic symptoms between 1) stomach pain 2) constipation, loose bowels or diarrhea and 3) nausea, gas, or indigestion. Secondly, is it 4) chest pain, or 4a) shortness of breath? These are divided in the PHQ-15. Where is the assessment for 5) fainting and 6) feeling your heart race? Patients with fibromyalgia do have 7) pain with intercourse, particularly if they have comorbid chronic pelvic pain. This “short form” could affect the outcome regarding severity of symptoms when compared to the validated PHQ-15 tool. Isn’t it possible that the validated tool is validated because of the way the questions are asked?

He even says, “The PHQ-15 is best characterized as a measure of somatic symptom severity.” So why didn’t he use it? That is the $100,000 question. Why did this escape a peer reviewed journal editor? 

The Role of Fibromyalgia Diagnostic Criteria

Roland Staud, MD et. al. (University of Florida, Gainesville, 2010) had this to say, in part, about the provisional diagnostic criteria which was later modified, but they bring up some good points to help with your questions.

“...After a series of analyses, Wolfe et al concluded that a widespread pain index was the best predictor of FM. When this index was excluded from the analysis, key predictors of FM were nonrefreshing sleep, fatigue, cognitive difficulties, and a host of somatic symptoms... there is a glaring omission of well-known mechanistic FM features, such as hyperalgesia, central sensitization, or dysfunctional pain modulation...Also, the somatic symptom list is extremely broad somatic symptoms, and the symptoms are ordered by neither relevance nor predictive value, etc., supposedly contributing equally to FM. In conclusion, whether or not these new criteria are easy to apply by practicing physicians will require empirical testing. Unfortunately, the new criteria are imprecise, ill-defined, lack mechanistic features, and are completely symptom focused…”

This has been my opinion as well. To simply list somatic complaints without further investigation is cause for alarm. The ACR suggests comorbid conditions, tension headache or migraine, digestive problems (i.e. irritable bowel syndrome, gastric reflux) irritable or overactive bladder, pelvic pain, and temporomandibular disorder, causing face or jaw pain, jaw clicking and ringing in the ears. And, they recognize depression or anxiety as a disorder that can accompany fibromyalgia, which can accompany any chronic illness. (Accessed 6-26-2015).  Other things may explain the somatic complaints, such as hypothyroidism, cancer, and much more.

Dr. Katsuhiro Toda (Japan) wrote a letter to the editor or Arthritis Care and Research on the provisional criteria, (Wolfe, 2010) which you can access here. And,  he wrote a letter  tothe editor of the Journal of Rheumatology, The Modification of the American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia Should Be Supplemented and Revised (Wolfe, 2011) of interest. “…In Japan, many physicians have ignored fibromyalgia. Therefore, patients with fibromyalgia are often diagnosed with psychogenic pain or somatoform disorder…”  

You might also be interested in seeing this editorial in the journal “Rheumatology.”  and Dr. Smythe’s article, which also outlines the lack of specificity in the Wolfe criteria.

Dr. Robert Bennett has contributed over 500 papers on fibromyalgia, he is considered an expert, and he led the research for theAlternative Diagnostic Criteria (Bennett, et al., 2014). You can read my blog regarding the criteria, and on my website.

I encourage you to visit my blog, look in the archives and you will see that I have written on MANY topics regarding fibromyalgia.   

Be sure to search PubMed. Connect the dots by searching fibromyalgia along with any one of the comorbid disorders. For instance, a study just published on fibromyalgia and migraine. You will find there has been more than one connection made between fibromyalgia and small fiber neuropathy and fibromyalgia too.

I have found that when one person has a question, someone else will too. Therefore, I will be sharing this information on my blog.

I am attaching a resource list for you and I will include reference to some recent studies that might help you. Good luck and please keep me updated. I would love to see what you come up with for your class.

Best regards, Celeste Cooper


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]

Kroenke K1, Spitzer RL, Williams JB. The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosom Med. 2002 Mar-Apr;64(2):258-66.

J Rheumatol. 2011 Jun;38(6):975-8. doi: 10.3899/jrheum.110142.

Staud R, Price DD, Robinson ME. The provisional diagnostic criteria for fibromyalgia: one step forward, two steps back: comment on the article by Wolfe et al. Arthritis Care Res (Hoboken). 2010 Nov;62(11):1675-6; author reply 1676-8. doi: 10.1002/acr.20290.

Toda K. Preliminary diagnostic criteria for fibromyalgiashould be partially revised: comment on the article by Wolfe et al. Arthritis Care Res (Hoboken). 2011 Feb;63(2):308-9; author reply 309-10. doi: 10.1002/acr.20358.  

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). 2010 May;62(5):600-10. doi: 10.1002/acr.20140.

Wolfe F1, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.

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


Antonio R Zamunér MSc, PT*, Meire Forti PT, Carolina P Andrade PT, Mariana Arias Avila PhD, PT andEster da Silva PhD, PT RespiratorySinus Arrhythmia and its Association with Pain in Women with FibromyalgiaSyndrome. Article first published online: 1 JUN 2015 DOI: 10.1111/papr.12321

Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]

Flodin P1, Martinsen S, Löfgren M, Bileviciute-Ljungar I, Kosek E, Fransson P.
Fibromyalgia Is Associated with Decreased Connectivity Between Pain- and Sensorimotor Brain Areas. Brain Connect. 2014 Aug 7. [Epub ahead of print]

García JJ1, Cidoncha A2, Bote ME3, Hinchado MD3, Ortega E3. Altered profile of chemokines in fibromyalgia patients. Ann Clin Biochem. 2014 Sep;51(Pt 5):576-81. doi: 10.1177/0004563213506413. Epub 2013 Oct 8.

Giannoccaro MP, Donadio V, Incensi A, Avoni P, Liguori R. Small nerve fiber involvement in patients referred for fibromyalgia.  Muscle Nerve. 2014 May;49(5):757-9. doi: 10.1002/mus.24156. Epub 2014 Jan 28. 

Garcia JJ, Ortega E. Soluble fractalkine in the plasma of fibromyalgia patients.
An Acad Bras Cienc. 2014 Dec 9;0:0. [Epub ahead of print]

Inal S1, Inal EE, Okyay GU, Oztürk GT, Oneç K, Güz G. Fibromyalgia and nondipper circadian blood pressure variability. J Clin Rheumatol. 2014 Dec;20(8):422-6. doi: 10.1097/RHU.0000000000000189.

Jones GT1, Atzeni F, Beasley M, Flüß E, Sarzi-Puttini P, Macfarlane GJ. The prevalence of fibromyalgia in the general population - a comparison of the American College of Rheumatology 1990, 2010 and modified 2010 classification criteria. Arthritis Rheumatol. 2014 Oct 16. [Epub ahead of print]

Kosek E1, Altawil R2, Kadetoff D3, Finn A4, Westman M2, Le Maître E2, Andersson M5, Jensen-Urstad M6, Lampa J2. Evidence of different mediators of central inflammation in dysfunctional and inflammatory pain--interleukin-8 infibromyalgia and interleukin-1 β in rheumatoid arthritis. J Neuroimmunol. 2015 Mar 15;280:49-55. doi: 10.1016/j.jneuroim.2015.02.002. Epub 2015 Feb 19.

Kosmidis ML1, Koutsogeorgopoulou L1, Alexopoulos H1, Mamali I1, Vlachoyiannopoulos PG1, Voulgarelis M1, Moutsopoulos HM1, Tzioufas AG1, Dalakas MC2. Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study. J Neurol Sci. 2014 Sep 28. pii: S0022-510X(14)00633-9. doi: 10.1016/j.jns.2014.09.035. [Epub ahead of print]

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

Napadow V1, Harris RE.What has functional connectivity and chemical neuroimaging in fibromyalgia taught us about the mechanismsand management of 'centralized' pain? Arthritis Res Ther. 2014;16(5):425.

Oaklander AL, Herzog ZD, Downs H, Klein MM. Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia. Pain. 2013 Jun 5. pii: S0304-3959(13)00294-7. doi: 10.1016/j.pain.2013.06.001. [Epub ahead of print]

Olivan-Blázquez B1, Herrera-Mercadal P2, Puebla-Guedea M2, Pérez-Yus MC2, Andrés E3, Fayed N4, Hoyo YL5, Magallon R6, Roca M7, Garcia-Campayo J8. Efficacy of memantine in the treatment of fibromyalgia: a double-blind randomised controlled trial with 6-month follow-up. Pain. 2014 Sep 10. pii: S0304-3959(14)00424-2. doi: 10.1016/j.pain.2014.09.004. [Epub ahead of print]

Riva R1, Mork PJ, Westgaard RH, Okkenhaug Johansen T, Lundberg U.Catecholamines and heart rate in female fibromyalgia patients. .J Psychosom Res. 2012 Jan;72(1):51-7. doi: 10.1016/j.jpsychores.2011.09.010. Epub 2011 Oct 24.

Shmygalev S, Dagtekin O, Gerbershagen HJ, Marcus H, Jübner M, Sabatowski R, Petzke F. Assessing Cognitive and Psychomotor Performance in Patients with Fibromyalgia Syndrome. Pain Ther. 2014 Oct 25. [Epub ahead of print]

Sugimoto C1, Konno T2, Wakao R3, Fujita H1, Fujita H1, Wakao H1. Mucosal-associated invariant T cell is a potential marker to distinguish fibromyalgia syndrome from arthritis.
PLoS One. 2015 Apr 8;10(4):e0121124. doi: 10.1371/journal.pone.0121124. eCollection 2015.

Tsai PS1, Fan YC, Huang CJ. Fibromyalgia Is Associated With Coronary Heart Disease: A Population-Based Cohort Study. Reg Anesth Pain Med. 2014 Nov 26. [Epub ahead of print]

Nurcan Üçeyler, Susanne Kewenig, Waldemar Kafke, Sarah Kittel-Schneider and Claudia Sommer. Skin cytokine expression in patients with fibromyalgia syndrome is not different from controls. BMC Neurology 2014, 14:185  doi:10.1186/s12883-014-0185-0

Veldhuijzen DS, Sondaal SF, Oosterman JM. Intact cognitive inhibition in patients with fibromyalgia but evidence of declined processing speed.J Pain. 2012 May;13(5):507-15. doi: 10.1016/j.jpain.2012.02.011.

Vij B1, Whipple MO2, Tepper SJ1, Mohabbat AB2, Stillman M1, Vincent A2. Frequency of Migraine Headaches in Patients With Fibromyalgia. Headache. 2015 May 21. doi: 10.1111/head.12590. [Epub ahead of print]

Wallace DJ1, Gavin IM, Karpenko O, Barkhordar F, Gillis BS. Cytokine and chemokine profiles in fibromyalgia, rheumatoid arthritis andsystemic lupus erythematosus: a potentially useful tool in differentialdiagnosis. Rheumatol Int. 2014 Nov 7. [Epub ahead of print] 

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"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.  

Friday, August 28, 2015

On the Heels of Fall

My respite is over, and how inspirational the Rockies were for me. The orange sunsets were unforgettable.

As we came down out of the mountains, I became acutely aware that the summer heat and humidity are still present, but I also know we are on the heels of fall. The lazy days of summer could easily slip away and surrender to crisp chilly air over night here in the Midwest.

I know it is time to prepare for the next season. A need for my own daily reminders of things to apply from our first book is what prompted the idea to write what I lovingly refer to as the BBWS series. With short-term memory loss, I need written prompts, a string tied to my little finger or a note pinned to my jacket isn’t enough.

If you aren’t familiar with the series, you can learn more at my author profile.  There is also detailed information on my website at the following links if you want more information before you decide if this is a book for you. If you have the book, it's time to get it out and re-explore. I suspect you will see things from a different perspective, and you will learn something new to share.

Fall is the season for reaping the rewards of summer and preparing for the winter. It is a time to reflect and look forward. I hope you enjoy Fall Devotions. We have been told it offers encouragement, practical advice, comfort, and aesthetic appeal.

Here’s to a colorful and hearty fall season.


Amazon in paperback 
Amazon UK Kindle 
Amazon Canada Kindle 
Barnes and Nobel paperback 

Thursday, August 27, 2015

When a Peek at Chronic Pelvic Pain Isn't Enough

Chronic pelvic pain comes in many forms and there are different symptoms and diagnoses to consider. Following are links to my three part series as contributing chronic pain pro at Health Central.

1 - Essential Elements of Pelvic Pain in Men and Women 

Pelvic pain can originate from different sources and it can be acute or chronic. Regardless, there are contributing factors to consider. Some are very treatable and others can be more difficult to manage. Acute pelvic pain is a warning sign that comes on suddenly lasting a few minutes to a few days depending on the cause. Chronic pelvic pain can be constant or come flares and symptoms can vary in character and intensity. Knowing what and when to report any unusual symptoms to your doctor is important, because some causes of pelvic pain when left untreated can cause permanent damage that could be avoided when we know what to do…

2 - The Secret to Pelvic Pain and the Myofascia 

If you have chronic pelvic pain (CPP), you know the symptoms. What you may not know is that myofascial trigger points, shortened pieces of muscle fiber that form a knot and shorten the muscle involved, play a role of their own in this painful disorder... 

3 - Why knowing the cause of pelvic pain is essential to treatment

Chronic pelvic pain can be constant or come and go with a flare up of symptoms. Symptoms can be mild to severe and can vary in intensity during the day or with a flare. The character of pelvic pain can be different too. For instance, someone with painful bladder syndrome or prostatitis has a symptom in common, burning with urination (dysuria), but pain associated with irritable bowel syndrome is described as cramping or churning. Symptoms vary depending on the underlying cause of their pain. That’s why it is important to know how to report your symptoms... 

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"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.  

Sunday, August 16, 2015

The Why and the Way Fibromyalgia Studies are Important to You

To get a better understanding of fibromyalgia and the disorders that cluster with them, we need to study them side-by-side so any trends are exposed. Also important is screening for the presence of myofascial pain syndrome (MPS) to assure the participant pool has been identified correctly, because MPS is known as the great imitator.

It’s Not Just Fibro

Many pain disorders have centralization affects, probably most, so while looking at centralization in fibromyalgia; we may need to be more diverse in our thinking. Dr. Robert Bennett and his team 
found that fibromyalgia is often accompanied by another pain disorder. Therefore, while we do experience body-wide pain not directly related to injury or peripheral disease (which indicates centralization-involvement of the brain), and sleep problems, fatigue, and cognitive issues, we also have clustering of disorders. The American College of Rheumatology identifies depression or anxiety, migraine, tension headaches, digestive and bladder problems, pelvic pain, and TMJ. The CDC suggests FM occurs with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS), and it could have a loose underlying genetic factor. Low back pain syndrome is also considered a disorder of centralization, but chronic low back pain patients do not share a clustering of noted disorders. If we compare the two, it suggests that centralization of pain is not the only factor at play in fibromyalgia. It could be, and is suggested in some studies that the amplification of pain by the brain (centralization) is not the only central nervous system involvement.

Investigators are doing some interesting work by looking at fibromyalgia and chronic fatigue syndrome together because they are often associated. Gene expression  might help us understand clustering in a meaningful way. Leaky gut syndrome has been associated with fibromyalgia and a study on ME/CFS and the association and treatment of leaky gut holds some promise. Since these two disorders frequently occur together, this might help us find better treatments. Though the results differ somewhat, studies suggest the need for more research regarding abnormal immune reactions in both FM and ME/CFS (SEID). Interestingly, leaky gut syndrome has been implicated in many autoimmunedisorders and in irritable bowel syndrome,  prevalent in fibromyalgia.

Myofascia and Fibromyalgia: Could There Be an Answer to Your Question?

Any time a person tells me their physician cannot explain neuropathy symptoms (numbness, tingling, sensitivity, weakness, cramping, spasms, etc.), I ask them to learn more about myofascial pain syndrome (MPS).  Myofascial trigger points  are pain generators in many of the comorbid conditions identified in this article. Rheumatologists are internal medicine doctors and many do not understand MPS, how to assess for it, or what treatments work. However, there are physicians and therapists who do.

You will find an article I did at Health Central from an interview with pain specialist, Dr. Karl Hurst-Wicker quite interesting.   It is a necessary read for anyone who wants to understand the role of centralization and peripheral pain generation in fibromyalgia and other unexplained pain.

It’s time to get it right. When funding by unbiased organizations is at an all time low, such as the NIH, we need to make every effort to do it the right way. If you have any of the clustering of symptoms, report them to your doctor and share this blog. Every piece of data counts and so do you.

Resources linked:

American College of Rheumatology, Fibromyalgia

Center for Disease Control, Fibromyalgia

Health Central, Fibromyalgia Centralization and Peripheral Myofascial Pain: Interview with Karl Hurst-Wicker, MD

Myofascial Pain Syndrome at

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"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.  

Friday, July 17, 2015

Coenzyme Q10 (CoQ10) for Fibromyalgia, ME/CFS, and Migraine

“Coenzyme Q10 is a natural compound produced by the body… On a cellular chemistry level, this antioxidant helps convert food into energy.” 
- Cooper and Miller, 2010 

CoQ10, also known as ubiquinone, is a fat-soluble supplement that is believed to help with many things from heart failure to cancer. But, for this post we will focus on how it might help fibromyalgia, ME/CFS (chronic fatigue syndrome), migraine, and related symptoms.

Effects of CoQ10 on Gene Expression and Human Cell Signaling

CoQ10 affects expression of genes in mice, and gene expression in human cell signaling,   metabolism and transport. It is thought that the effects of CoQ10 supplementation may be due to this property.

The Mitochondria and CoQ10

“In order to understand how CoQ10 works, it is first necessary to understand mitochondria.  Imagine that each cell in your body is a car. Mitochondria are the engines – or energy producers – in each cell that make your “car” run. It is the job of the mitochondria to supply this energy in the form of adenosine triphosphate (ATP). This is where CoQ10 comes in. To continue the car analogy, it is the oil that enables the engine to work. [It] is the catalyst that makes it possible for the mitochondria to produce ATP, the molecule upon which all cellular functions in the body depend.” 

Coenzyme Q10 is essential to the functioning of the cells in our body, and deficiency has been related to several serious health consequences. This does not mean it comes without precautions and side effects, or drug interactions.  So, if you decide to try it, please make sure your doctor and pharmacist have a complete list of all your medications and all the over-the-counter supplements and remedies you use. You can review tips for medication safety on my website.

Could CoQ10 Help Fibromyalgia and ME/CFS? 

According to the Mayo Clinic, early study suggests CoQ10 may be helpful for fibromyalgia and related symptoms of dry mouth, muscle weakness and dystrophies, nerve pain, tinnitus (ringing in the ears).

One study on mitochondrial dysfunction shows that CoQ10 could help. Interestingly, in this study IL-8 (a proinflammatory cytokine) was elevated. This was also found in another study relating neuroinflammation to heart rate variability (an autonomic effect) in fibromyalgia. This begs the question,

“Could coQ10 also help fibromyalgia patients 
with autonomic nervous system involvement?"

“It is argued that mitochondrial dysfunctions, e.g. lowered ATP production, may play a role in the onset of ME/cfs symptoms, e.g. fatigue and post exertional malaise, and may explain in part the central metabolic abnormalities observed in ME/cfs, e.g. glucose hypometabolism and cerebral hypoperfusion.”  (Morris and Maes, 2014.)  Though further trials are suggested, it was found in another study that CoQ10 along with NADH, might be beneficial in treating ME/CFS. The results of another study showed “lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion.”  

Mitchondria, CoQ10 and Migraine

In a literature review published in the journal Headache (Markley, 2012), it was concluded,
"Arising from these extensive neurophysiological studies, the treatment of metabolic encephalomyopathies with pharmacological doses of riboflavin and coenzyme Q10 has shown positive benefits. The same treatment has now been applied to migraine, adding clinical support to the theory that migraine is a mitochondrial disorder.”

According to a Health Central Clinician,  CoQ10 is showing promise for preventing migraine. Research was presented at an American Headache Society meeting, showing 300 mg per day to be effective. It is also reported that gel capsules are absorbed and utilized best by the body. 

Taking CoQ10

As with all supplements, CoQ10 is not regulated by the FDA, so please check the manufacturers safety and purity standards.  You can check to make sure it is USP verified

Coenzyme Q10 should not be taken on an empty stomach because it will reduce absorption. It is absorbed best when taken with foods that have fat, such as olive oil (a healthy choice) because it is fat-soluble. Taking it in smaller doses several times a day will help maintain the level circulating in your body and provide the greatest benefit. 

While CoQ10 is relatively safe, as we age, so does our metabolism and our production of CoQ10. What is a recommended dose for one person might not be so for another, that’s why having the guidance of your physician is important.  If you experience common side effects, talk it over with your doctor, it could be you need to start with a lower dose. 

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"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.  

Celeste's Website

Celeste's Website
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