Monday, July 22, 2013

Being Alone vs. Loneliness: What does this mean to someone in chronic pain?


Being Alone vs. Loneliness


Being alone is something we sometimes choose, and it can be a healthy time for self exploration. Loneliness, on the other hand, fosters isolation and seclusion. Being alone and loneliness are not the same. As human beings, we have a basic need to spend time with others.



Benefits of appreciating time with others are:

•  Sharing of experiences.
•  Having time to ask for and give support.
•  Finding social balance between ourselves and
    others.

Next time you are feeling lonely, consider:

•  Is my alone time productive for me?
•  Is my alone time balanced with together time?
•  Is my alone time making me feel too alone?


What can I do today to balance my alone time and my time with others? 

Excerpt from: Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Summer Devotions. 


Available at AMAZON here, or BARNES and NOBEL here

Tuesday, July 16, 2013

Grooving to the Move: Seven Points of Locomotion. Part II by Celeste Cooper


In part I, here, we talked about the first 3 points to “Grooving to the Move: Seven Points of Locomotion.”

1) First, understand the urge to slip up is not yours alone.
2) Think of exercise as movement therapy.
3) Moving for the benefit of it with the least stress.

Now it’s time to look at number four, exercising when you have chronic pain is the personification of the three rights:

1) Right kind
2) Right amount
3) Right time
 So, what is too much, and what is enough? Stretching and aerobic exercise are a must if your physician has approved it for you and you don’t have a condition that prohibits it, but going too fast or trying to exercise a muscle riddled with myofascial trigger points will only set you back, give you feelings of defeat, and most likely cause you to quit. Key points number five, live by your convictions. Accept what you can, acknowledge difficulties, and create opportunity.

                                                          Tattoo this to your forehead.


What about when we are in a flare? Key point number six, know your body.  What are its experiences from previous flares?  Move when you can to prevent atrophy of your muscles. Don’t overdo, there is plenty of time to get your groove on again, just don’t forget “Everybody is doin' a brand new dance,” there is always somewhere to join in. When movement results in relief of symptoms, trigger points are treated, and we identify aggravating factors, we can sit back and appreciate the good feelings. We are definitely more likely to shake our bootie when we are able.

Number seven, certain times of the day are generally better, such as late morning, and early afternoon (after food has settled, because when we eat, blood is shunted from muscle and other organs to help digestion work properly). Exercise or movement therapy, which ever appeals to your sensibility, causes the brain to release “feel good chemicals” called endorphins, which is great, but in excess, they can interfere with sleep, so avoid routines or the urge to get your groove on right before going to bed.

Finding the right fitness routine for you is important; imagine the oil lubricating stiff muscles allowing them to flow freely as you move, instead of jerking and resisting one another like a sputtering car nearly on empty. Remember, you are not in a marathon, doing more on Monday to make up for a Sunday is a disaster for us. Last but not lease, enjoy what you do, find ways to make it infectious, visualize yourself at the front of the train, encouraging others to grab on. See if you can recruit a friend, you will be doing each other a favor. 

As a quick recap, the seven key ways to move to the groove are:

1) First, understand the urge to slip up is not yours alone.
2) Think of exercise as movement therapy.
3) Moving for benefit with the least stress.
4) Personification of the three rights, right kind, amount and time.
5) Live by your convictions.
6) Know your body.
7) Appeal to your sensibility.

I think I’ll do a short jig. Come on, get up, just a shake or two. Let’s get a groove on, if only for a moment or two. Now LAUGH!


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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com



Grooving to the Move: Seven Points of Locomotion. Part I by Celeste Cooper


We all know the urge to slump, metaphorically and physically. Here’s an example. We have good intentions for exercise. We think about the many different types, weight lifting, jogging, kick boxing (oh, sure), walking, water aerobics, Zumba, sports, the tread mill or other contraptions, or integrative eastern movements, such as Yoga, T’ai Chi, and Qi Gong. Sometimes, we actually attend a class, or two, or as in my case, buy the latest DVD.  We do it with good intentions. We play the DVD or get on that treadmill a few times and then……  Hey! Where did my mo-jo go?

Staying tuned into an exercise routine is a universal problem. That’s right, universal, meaning it happens to nearly everyone. Those of us with chronic pain issues are not the only ones to pull away from our well intended desire to “groove to the music.” Following are seven key points to consider.

First, understand the urge to slip up is not yours alone. Exercising with a group or being in an online contest keeps us motivated.  For some of us, joining a club isn’t possible, so how can we motivate ourselves?  Experiment, find something you really like to do, or form a team. Our peers can be very motivating.

Second, try to think of exercise as movement therapy, find ways to incorporate movement into a day. It can be as easy as setting a timer and getting up and doing a few stretches and walking around. Sitting in a recliner? Reach over and touch your toes every few minutes, and roll your head. Getting out of the shower? Use your towel with purpose; put your foot on the commode, cover down works best. ;=}, and stretch your back with purpose as you dry your toes. Dry your backside using tall stretches with your right arm, left arm stretching down, repeat other side. Taking the stairs can be difficult when we have problems with hips and joints, it’s unappealing and it can be a fall risk, but have you thought about rocking several times a day, or sitting on a large Yoga ball and bouncing? How about washing a few windows or reorganizing tools or kitchen cabinets? We all have better days, right? Think about increasing your task load, and then break it down into manageable pieces. Moving can improve our environment and give us a feeling of self accomplishment. 


Third, if what we do makes our pain worse, we are more likely not to do it. We’re smart enough to know that if we don’t move, our muscles will waste, and joint pain and arthritis will get worse. That should be motivating. If you have fibromyalgia, your muscles will set up like concrete restricting joints and locomotion. Hmmm, reminds me of words to an old song “Everybody is doin' a brand new dance, now (Come on baby, do the Loco-motion).”

Research tells us that chronic pain in general, regardless of the initiating event, is due to the presence of myofascial pain syndrome. (Read more here.) Physicians have been mystified as to why some patients with the same condition have chronic pain and others don’t. Few understand what myofascial pain syndrome is or the degree of pain and dysfunction it causes, unless they are a sports medicine doctor, chiropractor, physiatrist, or integrative pain specialist. Exercising muscles with myofascial trigger points (MTrPs) can not only make the primary pain worse, it can create more trigger points in compensating. In this case, treating MTrPs before exercising or moving is necessary.  A muscle that is restored to its normal resting length, then strengthened is a happy muscle, and that’s what we want, right? 

In Part II, here, we finish up with the last four key points:

4) Personification of the three rights, right kind, amount and time.
5) Live by your convictions.
6) Know your body.
7) Appeal to your sensibility.


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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com


Friday, July 12, 2013

Summer Devotions - Kindle Book by Celeste Cooper, RN and Jeff Miller, PhD, free TOMORROW - Last day of the Virtual Book Tour



Kindle version  FREE 

TOMORROW, SATURDAY, June 13, 2013 

Pacific Time (West Coast).  12:00 a.m., Saturday TO 12:00 a.m., Sunday.

click here.


Kindle has free apps for MAC, PC, Smartphones (iPhone, Android) and other devices, here.

Help us set a new record. 
(Scroll down the page to find out how to leave a review)

~ • ~ • ~ • ~ • ~ • ~

“Broken Body – Wounded Spirit is a movable feast of poetry, reflections, coping strategies, educational tidbits, enchanting imagery, and more.  For anyone in persistent pain holding a desire to restore physical, mental, emotional, and spiritual balance, Celeste and Jeff offer help, hope, and a path to self-empowerment.”


~Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Principal Investigator of the Pain Action Alliance to Implement a National Strategy (PAINS)
 Read more here.

Celeste Cooper and Jeff Miller have provided an arsenal to fight this dragon that threatens energy, growth, and healing.  By focusing on each summer day, the authors send their readers on a personal journey of mindfulness and self awareness, allowing the reader to restructure personal experience on how pain is perceived.  

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The Last Preview

Day sixty-nine

Organizing your medical information is extremely important. This allows you to communicate effectively with your healthcare provider, and on day “Sixty-nine,” you are provided tools to answer this question, “What medications work, and which ones make me right side up or upside down?”

Rather than battle upstream without a paddle,
I will let my vessel right itself and flow the course, gathering wisdom from the shores.   
~Celeste


Celeste Cooper is a retired, advanced trained, registered nurse. She is lead author of several books, contributing author, and freelance writer. She volunteers as health expert at Sharecare, advocate, and participant in the Pain Action Alliance to Implement a National Strategy.  Through her own trials, she has learned to transform her perception of pain, and it has become her life's mission to share what she has learned with others who share this sometimes arduous journey. She by no means claims to be cured of chronic pain, but she is motivated to live her best life by not giving in to what she often calls the dragon. 

Paperback now available, clic here.
Kindle e-book available, click here.   (Don’t have Kindle? Get a free app here)
Barnes and Nobel in paperback, click here

We hope you will help us out by going back to Amazon to say a few words, rate the book, and let us and our other readers know what you think.  Just scroll down the page just past “More About the Author.”  

click on the
Write a Customer Review Button

Or click


 ~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Read more about Fall Devotions, click here

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

~ • ~ • ~ • ~ • ~ • ~

This ends the virtual book tour. 
Thank you for your support!

Enjoy!




Wednesday, July 10, 2013

Bias and the Band. Concerns and comments, “Are Doctors Paying Attention to Women in Pain?” from the National Pain Report


RE:

Are Doctors Paying Attention to Women in Pain?
July 8th, 2013 by Ed Coghlan
At the National Pain Report, here.

CDC Vital Signs. “Prescription Painkiller Overdoses: A growing epidemic, especially among women,” saying opioid deaths are as “under-recognized problem, here.


My comments:

This is what I have to say about the CDC report. [Vital Signs]. The IOM report "Relieving Pain in America..." states there are three groups of people who are discriminated against when it comes to adequate pain management, WOMEN, the poor, and African-Americans. [Complete report, pg 69-70, here. IOM Brief, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, here.

It perplexes me that opioids are the big concern when the first drug used to treat women is antidepressants and psychoactive drugs, because after all, we are a stressed out lot in an emotional state, right? 

Antidepressants are handed out like candy. I would argue that opioids are not, at least in my experience. The culture on managing pain has changed drastically over the past 5 years. Antidepressants interact with more medications, and when prescribed inappropriately, can increase the likelihood of suicidal ideation even when the patient wasn't clinically depressed. 

[See Dr Oz, Antidepressant Serotonin Imbalance, Suicide Warning, Depression, here]

One must bid the question, "Why are the effects of this classification of drugs not sensationalized, or considered?"  “How many women were also on these meds?” “Where is the data collection tool for this classification of medications? They are not only expensive; they come with far greater consequences.  They are not as effective as the pharmaceutical sales agent attempts to convince physicians, i.e. relieving pain and IMPROVING symptoms. There is an “under-recognized problem” on the effect of antidepressants, which completely restructure the brain. 

[See. CDC Vital Signs. “Prescription Painkiller Overdoses: A growing epidemic, especially among women,” saying opioid deaths are as “under-recognized problem, here.]

In their own report, they say men are more likely to die from overdose, so we focus on educating women? Hey! Aren't men important too?  This reeks of bias, just as stated in the IOM report. [And, the band rolls on, but the sound is deafening]

Statistics are just that, statistics. They can be skewed in data collection and study constructs.  Pain is pain. The CDC only focused on "illicit" pain killers. I would argue that NSAIDS are abused because they are about all we have left to take, and they are equally life threatening. [See, Study Finds NSAIDs Overused for Chronic Pain, here.]  Where are the stats on those? We were given opioid receptors for a reason, and I would like to see the research move in that direction. We should be focusing on the patient.

Summing up post comment:

I am not a proponent of any one thing except the right to choose and have our pain treated adequately. Instilling fear in our physicians and pharmacists creates malfeasance.  The biased culture on pain is not improving things. Look at the correlation with the CDC report.

I have the same concerns as Dr. Mehmet Oz regarding overprescribing of antidepressants. Read “Antidepressants: Are They Right For You?” here. or Dr Amen, expert psychiatrist, on “Do Antidepressants Do More Harm Than Good?” here.

In my search I found studies suggesting that antidepressants aren't treating clinical depression effectively, if at all. Other information suggests that antidepressants are treating the depression angle of chronic pain, but even in these studies, they were considering people with MAJOR depression, a clinical psychiatric condition.  We need research on psychoactive drugs that are NOT conducted by pharmaceutical companies.

Opioid medications have been around for centuries, physicians have a firm understanding of what they are, but there is a educational deficit between defining addiction vs. dependence, and patient teaching needs, but I would argue that patients do not receive enough information on psychoactive drugs of ANY sort. Also to be considered are any medications that increase tolerance, antidepressants happen to be among that group. Any medication that requires you to reduce the dose slowly has the propensity to be life threatening.

Wouldn't it be better to educate physicians and patients on how to watch for untoward symptoms and restore the doctor and patient relationship?    Relieving pain responsibly is only manifested by an improvement in function. We don’t need new tools, we have them. They are called patient assessment. Have we become so technological that we have forgotten how to interact with a human being?

You might be interested in reading the PAINS/Project Environmental Scan, Chronic Pain Management and the Practical Implications of Addressing Recommendations Put Forth in the Institute of Medicine (IOM) Report, Relieving Pain in America, here.

Treatment without bias is our right, and we as patients  must speak up. You can find ways of doing that on my website, here. I encourage you to leave comments when you read an article.  Feedback from the people like us is not only needed, it is desired. We must begin the dialogue.


We are law abiding citizens. Most of us do play by the rules, so why do we allow ourselves to be treated as criminals, or to be discriminated against because of our gender, our socio-economic status, our age, or the color of our skin? How can criminalizing a human condition be legal? What is happening to our society?

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  For more information about the author see http://TheseThree.com


Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD)

She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy (PainsProject.org).



Tuesday, July 9, 2013

Book Tour – Kindle Version Free – See Preview #7 by Celeste Cooper, RN and Jeff Miller, PhD


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Mark your calendar and help us set a new record. 

Kindle version  FREE 

one last time for one day, this coming SATURDAY, June 13, 2013 
Pacific Time (West Coast).  12:00 a.m., Saturday TO 12:00 a.m., Sunday.
 click here.

Kindle has free apps for MAC, PC, Smartphones (iPhone, Android) and other devices, here.

~ • ~ • ~ • ~ • ~ • ~

Preview  #7

Broken Body, Wounded Spirit takes those who suffer from chronic pain and illness on a magical ride to a place where all patients need to go: a place of relaxation, solace, and perspective.  Woven in a rich pattern of interrelated tips, stories, and lovely truisms, we learn that we control our journey, and that being mindful of the realities of dealing with a chronic disease puts us in charge.  I highly recommend this soulful little book.
 ~Richard Carson, Health advocate and Founder of ProHealth.com
Read more here.

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Day Thirty-four

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like 
free spirits in the presence of fate is strength undefeatable.”  
 ~Helen Keller, 1880 – 1968 

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"It has been said there are two paths to the acquisition of patience.  One requires direct experience of an unpleasant nature, the other, wisdom and the ability to profit by example. If you cannot use the latter, the former lurks in your everyday endeavors.  My priceless mentor/client Hazel used to say “You won’t learn, so now you’re gonna be taught”.  Faith can not be learned or taught.  Faith is discovered, uncovered or nurtured indirectly.  It develops with patience in the sense that we surrender to the greater tide of time that exists outside our myopic demands."

Dr. Jeff Miller is a counseling psychologist in private practice.  Among other interests, Jeff values working with patients with chronic pain and illness.


Paperback now available, clic here.
Kindle e-book available, click here.  
Barnes and Nobel in paperback, click here

We hope you will help us out by going back to Amazon to say a few words, rate the book, and let us and our other readers know what you think.  Just scroll down the page just past “More About the Author” and click on the:

Write a Customer Review Button

Or click


The book will be available at all major online retailers soon.


~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Read more about Fall Devotions, click here

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

~ • ~ • ~ • ~ • ~ • ~



Friday, July 5, 2013

SUMMER DEVOTIONS Book Tour, Preview #6 by Celeste Cooper, RN and Jeff Miller, PhD



Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series.

SUMMER DEVOTIONS Virtual Book Tour 
by Celeste Cooper, RN and Jeff Miller, PhD

Preview #6

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Published on June 2, 2013
Kindle version ranked 306 on day two out of Millions,  here.

Now available in paperback at Barnes and Nobel, here


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“This book is designed and inspired to fill the needs of people in chronic pain. From practical ‘how to’ suggestions, to more mind, body and spirit concepts, like contemplating the deeper meaning to life and health, it is exactly what many people have been looking and longing for. I am struck by its wise self-concepts, such as ‘We must learn to dance with the dragon, not fear its fire.”
 ~Cinda Crawford, Get Well Health, author and healer and host of the HealthMattersShow.com
Read more here.

Summer Devotions is the second of a four book series, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. It is a tribute to everyone committed to living a fearless life despite the road blocks caused by living with chronic pain and illness.

By noting sensory elements from a past experience, we can learn to journal which is an important piece to learning who we are.  One way of doing that is to write a short story.  You will find tips on exactly how to do that on Day Sixty.

Finding myself is significant, especially if am lost, which has been known to happen,
but creating myself is more fun.    ~Celeste


Celeste Cooper is a retired, advanced trained, registered nurse. She is lead author of several books, contributing author, and freelance writer. She volunteers as health expert at Sharecare, advocate, and participant in the Pain Action Alliance to Implement a National Strategy.  Through her own trials, she has learned to transform her perception of pain, and it has become her life's mission to share what she has learned with others who share this sometimes arduous journey. She does not claim to be cured of chronic pain, but she is motivated to live her best life by not giving in to what she often calls the dragon. 

Paperback now available, clic here.
Kindle e-book available, click here.   (Don’t have Kindle? Get a free app here)
Barnes and Nobel in paperback, click here

We hope you will help us out by going back to Amazon to say a few words, rate the book, and let us and our other readers know what you think.  Just scroll down the page just past “More About the Author” and click on the:

Write a Customer Review Button

Or click


The book will be available at all major online retailers soon.


~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Read more about Fall Devotions, click here

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


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Tuesday, July 2, 2013

Sneak peek #5 - Book Tour, SUMMER DEVOTIONS - Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series by Celeste Cooper


Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series
SUMMER DEVOTIONS – Virtual Book Tour
by Celeste Cooper

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Published on June 2, 2013,
Our Author ranking for all books is in the top 18%

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Sneak peek #5

“This book reminds me of the Daily Word. What Jeff and Celeste have created is a daily source of inspiration and guidance for people in pain. It can help them find peace, wisdom and wellness.”
 ~ Pat Anson, Editor, NationalPainReport.com
Read more here.

Celeste Cooper and Jeff Miller have provided an arsenal to fight this dragon that threatens energy, growth, and healing.  By focusing on each summer day, the authors send their readers on a personal journey of mindfulness and self awareness, allowing the reader to restructure personal experience on how pain is perceived.  

Two thousand years ago Marcus Aurelius recognized the “editorial” aspect of thought that amplifies and reduces the perception of pain.  While this modification skill is rarely taught in our culture, the ability to harness self-correcting cognition is a powerful ally in our mind-body arsenal.  We know that pain we endure for a reason ( bone marrow donation, a tattoo) is a different experience than unwanted or random pain (accidents, exacerbation of chronic pain). If we have a good story about the pain it is minimized and better tolerated.

Day Forty-three

“If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.”   
~Marcus Aurelius, 121 - March 17, 180

Dr. Jeff Miller is a counseling psychologist in private practice.  Among other interests, Jeff values working with patients with chronic pain and illness.


Paperback now available here.
Kindle e-book available here.   (Don’t have Kindle? Get a free app here)

We hope you will help us out by going back to Amazon to say a few words, rate the book, and let us and our other readers know what you think.  Just scroll down the page just past “More About the Author” and click on the:

Write a Customer Review Button

Or click



June 19, 2013
Addresses in an inspirational and insightful way the complications of living with chronic pain, 
providing information along with calming photos and aphorisms. Recommended reading 
for those who suffer pain in any form or duration.
~TruthSeeker

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The book will be available at all major online retailers soon.



~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Read more about Fall Devotions here

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

~ • ~ • ~ • ~ • ~ • ~

Monday, July 1, 2013

More FM drug trials of the same, really? 1990 vs 2010 Criteria, which is it? My comment by Celeste Cooper





Am I in a fibrofog? Is this new drug trial for pain or for cognitive dysfunction in FM or both? The news reports are confusing. Is one right and the other wrong? They can’t both be right, can they? I went on a search. You can find the answer at the bottom on this blog.




New Fibromyalgia (FM) Clinical Trial Now Enrolling at Avail Clinical Research in Central Florida; Accepting M/F Patients with Fibromyalgia Age 18-59. June 30, 2013 Digital Journal, read here

There was no place to leave a comment. I would have because cognitive deficit is a primary symptom of fibromyalgia. Its effects are more extensive, including complete word loss, sudden onset dyslexia, severe and alarming short term memory loss etc. When we compare these cognitive affects with those experienced by people with chronic pain in general, there is a difference. My thinking is that some of these symptoms can also be attributed to hypothyroidism, and non-restorative sleep evidenced by loss of slow wave progression in sleep studies of fibromyalgia patients. This leads to the next question, "Will these factors be considered in participant screening? (More to come later). 

I found some red flag words - “mood disorders,” which can include biological psychiatric conditions, such as "bi-polar disorder" or "major depressive disorder," neither to be confused with a normal situation reaction of temporary anxiety or depression. These are terms that should not be used flippantly. As a chronic pain advocate and fibromyalgia expert, why?  What fibromyalgia patients experience is not different that the situational depression or anxiety that others with chronic pain experience. I will compromise that catastrophic thinking can sustain symptoms, but I am perplexed as to why anyone thinks it is any different in fibromyalgia when resent research suggested overwhelmingly that FM is a biological disorder. Are we to think that because migraine, interstitial cystitis, periodic limb movement and bruxism in sleep, and many of the comorbid conditions to FM should also be considered as "mood disorders?" Really?

This particular article suggests the 1990 criteria will be used to screen participants; however, that is not the case, which leads to more confusion. I suspect it is because the reporter saw that comorbid conditions are recognized, unlike what is suggested in the 2010 criteria. 

Accurate reporting is necessary. Read on to understand why this is a concern to me.

The next article just released. I was able to leave a comment:

New Fibromyalgia (FM) Clinical Trial Now Enrolling at Achieve Clinical Research in Birmingham, Alabama; Accepting M/F Patients with Fibromyalgia Age 18-70. July 1st, 2013 WatchListNews Press Release, here.

I hope this drug trial is targeted at a defective immune system versus chronic pain in general. Results of the FM/a Test have been overwhelming post research, and the follow up study in progress is ruling out the immune blood protein findings in FM in other rheumatological conditions. Otherwise, this study is on chronic pain in general. 

The number of Americans with chronic pain was amended from 116 million to an estimated 100 million, and the 2010 Preliminary Proposed criteria for diagnosing fibromyalgia has met with a great deal of criticism. The tool is confusing and does not require a physical exam. Many are boycotting this criteria because it is confusing and misleading. Since there is a blood test now for diagnosing FM, would that be a better place to start? It would certainly rule out any psychological illness that might otherwise be inaccurately diagnosed as FM.  The Wolfe, et al. criteria was amended in 2011 as "modified," and does NOT look specifically at the comorbid disorders you discuss. Instead, it looks at polysymtomatic syndrome as defined in the American Psychiatric Association diagnosis manual the DSM-5.

Side note: See “Fibromyalgianess is ALL in Our Head? My Correspondence with Dr Frederick Wolfe.”  Here.

I am highly suspicious that this drug trial is more of the same. While antidepressants and anticonvulsants medications help with chronic pain, the evidence has been underwhelming. Treating an immunological disorder with an SNRI, SSIR, [oops should have been SSRI] or anti-seizure meditation or a similar drug in those classifications is not going to improve patient outcome. Look at the prevalence of hypothyroidism in FM, would such drugs help with these symptoms? I suggest a really good review of the recent research regarding immunological factors, A-V shunting in the hands of FM patients, and the presence of small fiber neuropathy.

Last, but certainly not least, I saw no mention that patients would be screened for comorbid myofascial pain syndrome?  There is plenty of research and evidence to suggest that myofascial trigger points and attachment trigger points are present in ALL patients with chronic pain. The difference is investigating why latent MTrPs are easily activated in fibromyalgia when compared to the usual aggravating factors, spinal misalignment, posture, joint deformity, etc. I suspect the immunological effect of FM plays a role.

I suggest they change their study cohorts to people with chronic pain in general.




From PRWeb visit: http://www.prweb.com/releases/fibromyalgia/trials/prweb10886175.htm

OBJECTIVES:
The primary objective of the study is to assess the ability of a new drug to reduce Fibromyalgia pain. Specifically, this will be accomplished by evaluating the safety and efficacy of a 6-week treatment regimen with this new Fibro drug, to a maximum dose of either 5 mg or 20 mg, relative to placebo, in subjects with FM. Efficacy will be assessed on the basis of the baseline-adjusted weekly mean pain score obtained in the last week of treatment, as derived from subjects’ daily reports in an electronic diary. Daily pain scores will be reported on an 11-point numeric rating scale (Pain-NRS).

The secondary objective of the study is to assess overall improvement in fibromyalgia following treatment with a new Fibro drug relative to placebo. This will be assessed by:
•the Patient Global Impression of Change (PGI-C); and
•the Fibromyalgia Impact Questionnaire (FIQ) total score.

5. Diagnosis of primary fibromyalgia (FM) as defined by the 2010 American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia


All blog posts and answers are not to replace medical advice.

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