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Saturday, March 28, 2015

What’s the Big Deal about Sleep? by Celeste Cooper

"When I woke up this morning my girlfriend asked me, 'Did you sleep good?' I said 'No, I made a few mistakes." 
~Steven Wright

Why is Sleep Important?

Sleep is a period of time when our brain and body take a break from daily stress. It’s something we all need and something we look forward to doing. Or is it? For anyone who has insomnia, fibromyalgia, chronic fatigue syndrome, chronic pain, or a primary sleep disorder, that is the million-dollar question.

We are all gussied up in our soft sleepwear and we begin our evening ritual for SLUMBER.

Schedule bedtime
Limit physical activity
Use comfort measures
Eliminate stress and food
Remember nothing—clear your mind

Excerpt Integrative Therapies… (Cooper and Miller)

So why doesn't it come, and if it does, why doesn't it feel like it?

How is Sleep Dysfunctional?

Regardless of the cause, it’s a real bummer when we don’t sleep. We glace at the clock and it is 3 a.m. ; we are still AWAKE, or it’s 7 a.m. and we realize we slept through the night, hooray! But, when we start the day, we realize it didn't matter. We are still POOPED OUT. The tumble begins (sometimes literally). We become agitated and our internal dialogue does not reflect happiness over the non-event.


Whether insomnia is a primary sleep problem within the circuitry of the brain or it is due to physical pain, a snoring bed partner, a pet that can’t settle in, or all of the above, the results are the same. Anyone who hasn't had sleep or quality sleep knows sleep deprivation psychosis, headaches, cognitive deficit, and problems with gait, tremors, and generalized irritation with the world around them.  

Sleep Apnea

Oxygen deprivation causes problems, significant ones. Some people stop breathing several times during the night. The body’s organ systems are affected because the body relies on oxygen for survival. This is called sleep apnea. Sleep apnea can occur for many reasons, but the most common cause is some type of airway obstruction. If you have been told you snore a lot (not what you think you do, like my husband), discuss it with your doctor. This seemingly annoying behavior to your partner is more than annoying to your body.

Slow Wave Sleep Progression

When the slow wave stages of sleep, when micro healing occurs, are deficient or absent maintenance or sleep and sleep quality are affected. This central sleep problem (occurring in the brain) is seen on a special EEG used during a sleep study. All those electrodes plastered to our head works much like an EKG does to see how the heart’s electric circuit is behaving. We often talk about body organs, but forget that every part of our body is wired, and like a frayed wire in the attic, sputters and spurts occur. Sometimes they are so severe the house blacks out or burns down. We need the deep stages of sleep for healing and some believe lack of these healing stages is an underlying factor in not only fatigue, but also the muscle pain of fibromyalgia.

What Else Interferes with Sleep?

Other things that interfere with quality include teeth grinding (bruxism), migraine, irritable bladder causing nocturia (getting up several times during the night to urinate), periodic limb movement (often called restless leg syndrome, only it is different because it occurs during sleep) and just about anything that interrupts the sleep cycle, including some medications or combination of medications.

“Depression, sleep deprivation, pain, fatigue, unhealthy relationships, and unhealthy coping mechanisms prevent us from achieving physical, mental, emotional, and spiritual balance. It is important to talk with our doctor about our sleep patterns, depression, and difficulty maintaining relationships, but we can manage challenges too. We can manage challenges by…"
(Excerpt) Spring Devotions (Cooper and Miller)

SLUMBER My Friend– the Conclusion 

Sleep is necessary for resting the mind, boosting the immune system, and fostering overall health and relationships.

Be sure to read the footnotes to this blog.

Some causes of sleep problems are quite treatable while others need ongoing time and our attention. But, regardless of the cause, our brain needs to prepare for sleep. Keep that acronym in mind—SLUMBER. It may not cure us, but it can’t hurt.

Human bodies respond to routine.
Make it a good one.

Now, I am not a sleep expert, but as a patient, I understand the repercussions of absent stage II and III sleep, insomnia, bruxism, nocturia, and severe periodic limb movement. So, if you share the rumbles, dark skies, and threatening clouds of sleep disruption, reach for the rainbow. Consult with a healthcare professional that specializes in sleep. They have a toolbox full of helpful strategies. Keep an open mind; help could be on the way.
March is #SleepAwareness Month. Here’s to those forty winks!

See the fabulous Infographics on the “Dangers of #Sleep Deprivation” at @HealthCentral. 

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


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

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

Saturday, March 14, 2015

Guest Blog on MINDFULNESS by Melissa Swanson

Following is a guest blog by “Fibro Warrior” Melissa Swanson on her relationship with mindfulness. Read about how her setbacks became the foundation for understanding mindfulness. 

Melissa's Blog

The day that I started to write this article it was an amazing coincidence I was watching 60 minutes  with a interview with an expert on mindfulness.  I reached down into the basket I keep next to my living room chair and pulled out the his CD. I had purchased it well over a year ago when I had been told probably for the third time by my friend that I should try it.

As we watched the report on 60 minutes I told my family that this is what I am supposed to be doing. I have tried it and had not been successful at it.

I can not count how many speakers or friends have told me to try mindfulness. Try asking a Type A person with ADD to lay down, shut your mind off and concentrate on your breathing while releasing each part of your body.

I was getting stressed out just trying relax. My mind would wander to the noises being made in our living room, the things I needed to do, then “STOP IT” “CONCENTRATE”. “Relax, breathe, shoulders, arms, “need to email the Volleyball parents” Ugh!!!

Each and every time I would try to relax I would get so stressed because I couldn’t focus on only my breathing and relaxing my body.

While attending the NFMCPA LAPAN advocacy training seminar, Dr. Michael Olpin was one of the speakers. Dr. Michael Olpin is a professor of Health Promotion at Weber State University and is the director of WSU’s Health Promotion Program. He is also director of the WSU Stress Relief Center. He earned his Ph.D. in Health Education from SIU, and his Master’s and bachelor’s degrees in Health Promotion and Psychology from BYU.

We were told his focus is stress management, mind/body wellness, mental & emotional wellness, and wellness coaching.

He said “a nice quiet room is best” and to forget using relaxation tapes like sounds from the rainforest.

He sat in his chair, closed his eyes, exhaled and let his body relax.  “Silently focus and repeat a specific word for 10-20 minutes.  This word you choose is called your mantra.  Choose a single calming word like peace, serene, silence.  He chose the word (one). Allow your mind to whisper your mantra over and over at a pace of about one repetition every 3-4 seconds”

He softly said the word 1 took a slight pause and then repeated the process 1..1..1…

He was in the middle of counting and started talking the thoughts that had popped into his head. “I need to remember to call so and so and I need to do…. Then when he realized he had loss focus he stopped and began again 1….1…1

What he said next was the turning point for me. “It is okay for your mind to wander”. “The important thing is to not get upset if you lose focus”.

Once you realize that you have lost your focus just start again 1..1..1

It was ok if I my mind wandered? Someone just told me I didn’t have to be perfect.

Then it was our turn… Softly he said

“Close your eyes, let your breath out, feel your body go limp and start counting 1,1,1.

Okay for the next 5 minutes we are going to try it.

Sitting in this uncomfortable chair in a conference room with all these people my body actually began to relax.

Yes, it did wander but as soon as I caught myself I started again.

“Slowly return to normal waking consciousness.  Take at least 2 minutes to return.”

I had finally discovered something that worked for me.  I needed to have someone tell me it was okay to get off track without stressing about it. Also, like every other treatment, medication, diet we have to keep trying new things until we find the right one that fits us.  I now have success with the CD’s that I had stressed out every time I had tried.

The last issue of the NFMCPA’s magazine Fibromyalgia & Chronic Pain Life’s Winter 2014 issue has a very informative and helpful article by Kim Jones and Mary Casselberry.

In addition to Dr. Michael Olpin’s website and his books ~ “Unwind; 7 principles for a Stress-Free Life & “The World is Not a Stressful Place; Stress relief for everyone” my friends also recommend Jon Kabat-Zinn ~ Full Catastrophe Living Using the Wisdomof Your Body and Mind to Face the Stress, Pain and Illness  and  Dr. Bernie Siegel

It seems that everywhere I turn someone is talking, tweeting or blogging about the benefits of Mindfulness.  I don’t know about everyone else but my life is so busy once I trained myself on how to do it finding the time was the next hurdle.  I found the time.  I chose to practice mindfulness during the time that I am waiting in my car for my Teenager after practices and games, in my office at school during my lunch and even as I soak in the bathtub. It is a cold winter and I do need to find time ways to help my body get through until Spring and Mindfulness is one of those ways. 

How can mindfulness work in your life?

About Melissa

Melissa Swanson is a chronic pain patient, advocate, and author. through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000 + fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice".  Graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association.  Member of the Leaders Against Pain Action Network.

Twitter:  MelissaSwanso22

A Gift

I give many thanks to Melissa for sharing her heartfelt story on mindfulness and her personal journey with chronic pain. Her support means to world to me as a friend, fellow patient, and author. I couldn't possibly think of a better way to introduce you to the helpful tips in Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, Spring Devotions. Thank you Melissa for being my friend, for your collaboration, for your leadership and your support.

Other Tips:

What’s New in Mindfulness Research from Health Central Editor

Fitness Magazine, Meditation for Beginners: How to Meditate 

If you need additional help, visit George Green’sMindfulness Advantage

~ • ~ • ~ • ~ • ~ • ~

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

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

Saturday, February 28, 2015

Celeste Cooper as Health Central Pro on Chronic Pain: Follow Along—Join In

Celeste Cooper, that’s me, is now a Health Pro at Health Central. My role there is to write twice a month on issues having to do with chronic pain. This includes writing about various conditions, coping strategies, and items of interest to you as a community member. As you can see from my very first post, A Personal Account on Chronic Pain: What If, it is YOU who inspires ME. If you have a question, all you have to do is ask. Each of us at Health Central comes to the table with our own life’s experiences and that includes you!

Getting Started

Once you join the community, you can:

  • Read all my posts
  • Follow my posts here where will see “Recent Activity” to the right.
  • Choose to be notified of any new posts  
  • Send a message
  • Read my comments

Here is what the page looks like.

Here you can stay up to date with my posts and have them delivered directly to you as they are posted. You might find other topics that apply to you, and you can follow those experts the same way.

What you can do as a community member:

Being a community member at Health Central means just that. This is an integrative and interactive platform for discussing what matters most to you and your health. You can:

  • Ask questions
  • Make comments on share/posts
  • Share your story

Other Things You Can Do at Health Central

  • Find information on “Conditions from A-Z”
  • Use key words in the search bar to find posts, questions, and answers.
  • Ask Questions. Once you become a member, you can ask questions here

You will also be able to:

Subscribe to the Newsletter
Explore Medications by Condition 
Find Healthy Recipes
Calculate Your BMI (Body Mass Index)
Find Your Ideal Body Weight
Check Your Levels of Stress and Evaluate Your Success at Managing Stress
Evaluate Your Sleep
Learn Your Body Fat Percentage (Good for baseline information and a periodic assessment.)
How to Get Recommended Daily Calories & Fat
Assess Risk Factors for High Cholesterol; Things You Can Do to Manage

I hope to see you at Health Central.

Think adversity? - See Opportunity! Celeste

Saturday, January 31, 2015

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

The following excerpt is from NIH P2P “The Role of Opioids in the Treatment of Chronic Pain,” which you can download and read here.

“The typically used 0-10 pain scale provides an overall sense of pain, but not an assessment of individual components related to pain. For example, recent work on the concept of “fibromyalgianess” (the tendency to respond to illness and psychosocial stress with fatigue, widespread pain, general increase in symptoms, and similar factors) identifies at least three components to chronic pain that are important to measure: chronic pain or irritation in specific body regions, somatic symptoms (e.g., fatigue, sleep, mood, memory), and sensitivity to sensory stimuli.”

Since when is fibromyalgia a concept? REALLY!?  The investigative world is a buzz with immune expression in fibromyalgia. It is NOT a concept or a belief system and if you have any doubts, read our book, Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome, and Myofascial Pain,   or Breaking Thru the Fibrofog – Proof that Fibromyalgia is Real, which was written by rheumatologist, Dr. Kevin White, or read the many others with good reviews. You can bet I made comments on the report and submitted them to people with far more influence than I submit. (see the following)

Synopsis of my comments:

What a label! The mere mention of this is judgmental… So, are diabetes, heart disease, arthritis and every other chronic illness or pain condition to be called fibromyalgianess when the patient has difficulty coping? This statement is using fibromyalgianess as a term aquatint with a severe mental health disorder called PSSD in the DSM-5… 

Human beings need to feel accepted. Providers become part of the problem when they use "concepts" [referring to fibromyalgianess] as an explanation… It is apparent they are ignorant regarding the literature regarding the biologics of FM and are riding the shirttails of Dr. Frederick Wolfe who coined this term. Important to add is that his research reviews are biased. He uses his own database, and uses "unapproved" tools in his studies for assessing mental health. ONE opinionated person makes it more difficult for patients to effectively deal with their illness. This underlying judgment and opaque rhetoric is part of the problem... To avoid opioid prescribing, they will be passing out antidepressants like candy for this "fibromyalgianess." Unbiased evidence to support antidepressants as a treatment for pain is insufficient. Over time, we know they can cause suicidal ideation in people taking them for pain instead of clinical depression. [We need alternatives; we need research on chronic pain as a disease.]

…There is a growing population of mentally ill patients included in research on fibromyalgia, representative of chronic pain in this report, because the Wolfe fibromyalgia criteria is capturing [patients with somatic symptom disorder] as having fibromyalgia when they do not…We have become complacent by thinking situational psychological distress is the same as a true biological chemical imbalance in the brain. This distinction was not made in this report and I would think it important when discussing the use of opioids, because many chronic pain patients are treated with both.

I couldn't agree more that chronic pain has an emotional component. Take this example. Have you ever experienced the visitor that disrupts a party in a negative way, one you wish would leave, one that puts you on edge, and in some cases, causes severe emotional distress? That is what chronic pain does to the patient, but the unwanted guest never leaves. So, should we say the host is responsible for the guest’s behavior? Think again.

[End of Comment]

What can you do?

Let the National Fibromyalgia and Chronic Pain Association (NFMCPA) know how you feel. You can find them on Facebook and Twitter. You can join here


Of course, there is a great deal more to the report, and the rest of it is quite good. I was impressed by the panelists’ responses to questions regarding the P2P report on Opioids for Chronic Pain in the audio question and answer period. It is helpful to hear a human voice and you can listen in too (information following).

I suppose I could be over-reacting because my dander is up regarding “fibromyalgianess.” It’s difficult not to be upset when I hear from patients that their physicians are treating them differently, some being told they need to see a psychiatrist instead of a rheumatologist. The fact is we are intelligent, hard working people that rise above the rigors of daily pain, dysfunctional sleep, and the symptoms of the comorbid disorders identified by clinicians who treat and study fibromyalgia. Sleep studies identify poor slow brain wave progression, periodic limb movement, and teeth grinding. Is this fibromyalgianess too? Some days we do better than others, but isn’t that so for every living thing? What do flowers look like when they go without water?

I cringe when I have to add “fibromyalgianess” to my word processing dictionary. I can only empathize with the many MS patients that blazed this trail before us, trying to survive “hysterical paralysis.” Unfortunately, as Dr. Phil McGraw says, “the predictor of future behavior is past behavior,” quite evident this “concept” is alive and well in the politics of pain.

You can listen to the audio playback of the panelists’ responses to questions regarding the P2P report by calling 888-640-7743; Enter replay code 114001. You can review the panel biographies at www.

Color me M & M – Mad and Motivated. 

Also see:

~ • ~ • ~ • ~ • ~ • ~

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

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

Saturday, January 24, 2015

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

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

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

But, is this a wise thing to do?

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

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

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

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

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

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

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

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

~ • ~ • ~ • ~ • ~ • ~

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

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

Saturday, January 17, 2015

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

As Suspected

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

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

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

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

Change Perspectives

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

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

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

Criteria that Affects the Future of Fibromyalgia

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

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

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

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

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

See the interview on this paper here. 

Fibromyalgia and physical trauma:the concepts we invent.



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



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

~ • ~ • ~ • ~ • ~ • ~

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

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.  

Thursday, January 8, 2015

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

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

My concerns as follows:

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

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

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

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

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

Is It Just Me?

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

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

You can read the full letter here.

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

By the Seat of Their Pants—Post Exfacto

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

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

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

What can we do?

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

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

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

Celeste's Website

Celeste's Website
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