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Saturday, May 16, 2015

May Awareness: Sharing Our Spoons by Celeste Cooper

Moving into the Month Of Spoonies

Did you know?

  • Those who learn to live despite chronic illness or pain are called spoonies.
  • May is awareness month for:
    • Allergy
    • Arthritis
    • Chronic Fatigue Syndrome (ME/CFS, SEID)
    • Ehlers-Danlos Syndrome (EDS)
    • Fibromyalgia
    •  Lyme’s Disease
    •  Neuropathy
    • Osteoporosis
    • Systemic Lupus Erythematosus (SLE, Lupus)

ALLERGY– The role in immune dysfunction

Allergy may be coexistent with or aggravate many conditions. “Allergy symptoms are in response to an abnormal neurotransmitter, specifically, histamine.” (Cooper and Miller, 2010

Take the Health Central “Allergy Quiz”. 


Arthritis is an umbrella term for many disorders that affect our joints. The most common type is osteoarthritis. Research is advancing what we know of about osteoarthritis.

See Health Central article "Arthritis Awareness Month: More than 100 Types of Arthritis and Related Diseases" by Lisa Emrich, Follow me, Celeste Cooper, Chronic Pain Health Pro and other "Health Guides and Pros" who walk the talk. Ask questions, comment, share your story


Advances have been made in understanding the biology of ME/CFS.  Love it or hate it, and there are reasons for concern, the Institute of Medicine proposes a name change that addresses the most common component, systemic exertion intolerance disease (SEID). There is genuine concern that this name, while addressing a biological cause, may result in ignoring other biological changes that have been associated with ME/CFS. Many people educate and advocate for those of us with this dreadful disorder. You can find out who they are on my website here


Ehlers-Danlos Syndrome is a genetic disease with several types under its umbrella. Characterized by joint hypermobility, skin elasticity, and connective tissue fragility, this disease results from atypical (unusual) proteins are responsible for the fragility of collagen, which is the glue for our tissue. Some patients with EDS also have fibromyalgia or are susceptible for developing myofascial pain syndromeRead on


We are learning more about fibromyalgia. Several researchers believe they are close to finding biomarkers, but the stigma lives on because of those who hold tight to the in ill-conceived notion that fibromyalgia is a psychosomatic disorder. In light of more recent research, how and why remains a mystery to me. But, as I always say, there is opportunity in adversity.

It’s possible that finding the answer to FM will unlock our understanding of other chronic pain disorders associated with pain (pain that is amplified by our brain’s perception). I have written many blogs on fibromyalgia; check out the archived blogs to the right listed according to month.


“Lyme disease is caused by the spirochete bacterium, Borrelia burgdorferi. The infection is passed to humans by the bite of an infected tick carrying the microorganism. Symptoms include a “bull’s eye” rash at the site of the bite, malaise, fever, headache, muscle aches, and swollen lymph nodes. Untreated Lyme disease can result in symptoms occurring months or years after the initial exposure and causing damage to the heart, joints, and nerves of infected individuals. Symptoms can imitate other diseases and can be misdiagnosed.” (Cooper and Miller, 2010)   

It is very sad to say, but despite overwhelming evidencethat Chronic Lyme’s Disease  exists, there are those who doubt it.


Osteoporosis is diagnosed according to bone density tests. Poor bone density makes our bones fragile increasing fracture. A common complication of osteoporosis is hip fracture, and the mortality of hip fracture in the elderly is very high.  Watch a great overview of osteoporosis and prevention on Health Central. 


“Neuropathy is any functional disturbance or pathological change in the peripheral nervous system; also used to denote nonspecific lesions, in contrast to inflammatory lesions.” (Cooper and Miller, 2010)

Neuropathy can be due to an array of medical conditions. It can also be idiopathic, meaning that the cause of symptoms is unknown. Read about neuropathic pain


Systemic Lupus Erythematosus is poorly understood and under researched. The cause is unknown. Often referred to as Lupus (not to be confused with discoid lupus), SLE affects predominately women, African Americans, Hispanics and Asians and is generally diagnosed between puberty and mid age. It is an inflammatory autoimmune disease that causes destruction of the body’s various connective tissues. Read on.  

You can learn more about Lupus in an article by Leslie Rott at Health Central, “Lupus is as Lupus Does”. 


While we wait for such evidence, it is important to remember that regardless of our diagnosis, regardless of biomarkers, we are yet to find the cause or a cure for many immune or neuro-immune disorders. So, we must find ways to cope in a healthy way. You can find coping 
and management strategies on my website.

To all my fellow SPOONIES, thank you for sharing this journey. 

~ • ~ • ~ • ~ • ~ • ~

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

NEW Website:

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog

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

Tuesday, May 5, 2015

Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper

The Dinner

The energy in the room was palpable at the Center for Practical Bioethics dinner. Two outstanding women, Kathleen M Foley, MD (who would be speaking the next day) and Noreen M. Clark, PhD (posthumous) were recognized for their dedication and commitment to palliative care with the “Vision to Action Award." 

Keynote speaker Keith Wailoo, PhD gave us a look at the history of pain, its perception, and its treatment through the years with the overview of his book “Pain: A Political History.” 

People from the “Center” as they refer to themselves are the remarkable people I am privileged to know. The theme, Healing What Hurts, was resonate. Hundreds of eye’s moistened, and the audience was moved as fellow patient leaders from “Relieving Pain in Kansas City” shared their poignant stories in an interview video. It is because those at the Center give their time and talent that we, as patients, have a voice. So often, we only hear the negatives of pain, but being part of the Pain Action Alliance to Implement a National Strategy (PAINS),  an initiative of the Center, is energizing and empowering.  

Day two

Welcomed by Dr. Marc Hahn, the day got a terrific start with introductions and an overview on chronic pain by Myra Christopher. We were introduced to Joan Berkley’s family, who are kind and caring, no surprise. Joan Berkley was a board member of the Center of Practical Bioethics and dedicated her time and her memorial to ethical treatment of patients. Her legacy lives on in this eighth year of the Joan Berkley Bioethics symposiums.

Healing What Hurts: The Politics of Pain

Throughout the day, we heard about every aspect of pain and politics. I appreciated the opportunity to engage with the speakers, the topics, and other members in the audience. The day was full of information on the many things that affect the politics of pain and its impact on patient care. We explored the need for evidence-based policies on state and national levels, and we heard from a patient living with pain, Janice Lynch Schuster, who represents those of us who live with a stigma for no other reason than we experience chronic pain. 

Dr. Wailoo, author of Pain: A Political History, and Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health spoke of pain and politics, the shifts, the battlegrounds, the perceptions (some very similar to today), bigotry, ethics, culture and welfare. As he worked his way through his presentation, it became evident to me that the history of Americans’ perceptions of pain and its treatment is a pendulum swinging back and forth like a Grandfather Clock. 

The disparities of pain care are not new. Dr. Bonica, known in the 70's as the father of pain medicine because of his integrative approaches, kept a diary of 100 interviews of pain care providers. What he found was everyone had their own theories. As decades roll on, the pendulum shifts from social rights such as disability, relinquishment of those rights, restoration of those rights, medical to legal, hateful, and almost lunatic accounts of pain, and back again. Pain perceptions evolved from medical assessment to becoming a political resting post of right vs. left (ethical vs. bigoted, not necessarily in that order) to entering the realm of legalities. History should be a teaching lesson, but as someone said in the closing remarks, if you asked 100 pain physicians today how to treat pain, you would still get 100 different answers. We have work to do.

Many things were discussed including access to prescriptions. Challenges include, refusal to fill, long commutes to a pharmacy that can and will, lack of patient funds to pay out of pocket for medications or required drug screening because insurance will not reimburse, and more. According to Dr. Foley, there is no evidence that decreasing opioid prescriptions, lowering doses, or the implementation of drug monitoring programs have any effect on opioid overdose or misuse. So what are our political leaders doing to prove their case for continuing to implement costly programs that have no evidence they work? As Bob Twillman, PhD put it, why would we keep doing the same thing and expect different results? We hear repeatedly how costly pain is to America, but exactly who is driving these costs up, and to what end? 

Dr. Twillman says addiction rates have not changed and he asks, “Will decreasing the number of opioid prescriptions written correlate with a decreased number of patients in pain?” Anyone with common sense knows the answer to that question. So, I ask, "Why are our politicians and governing agencies making such an absurd plan?" We were reminded that we have an election coming up. Maybe we should all think about these things and share our stories with our political figures as suggested by Katie Horton, JD, RN, MPH. She says we should challenge our representatives on why they support programs that are not curbing drug abuse, deaths, or improving patient pain care. For more information on policies, legislation and regulations check out SPPAN, State Pain Policy Networks, and please read and act on my blog:  

Ensuring Patient Access and Effective Drug Enforcement Act of 2015 - S. 483 H.R. 471: A Template Letter by Celeste Cooper

We learned from Dr. Richard Payne that the science of epigenetics (studying genetic outcomes of nature/nurture and the effect on DNA expression) could be a potential biomarker for chronic pain. 

As suggested by Dr. Richard Payne and Melissa Robinson maybe we should encourage our congressional representatives to explore the ethnic, racial, social, and behavioral influences on the treatment of chronic pain. Maybe we should research how to treat pain with patient centered goals, not political agendas. We need our physicians to join us in the plight for patient centered care and fight for their right to do so. Both Dr. Payne and Myra Christopher helped draft the IOM report, “Relieving Pain in America.”and they urge us to comment on the National Pain Strategy report that has resulted from the efforts of many, including the PAINSproject. You can read more on this on my blog: 
Make a Public Comment on the National Pain Strategy by Celeste Cooper (The deadline is in days, don't wait.)

Our psychosocial and basic needs are not being met. When our priorities are shelter and food,  our pain care takes a back seat, but it shouldn't have to. We must address these issues as the human thing to do, as an ethical obligation to ensure everyone has access to pain care. 

Dr. Lynn Webster, past president of the American Academy of Pain Medicine and author of The Painful Truth, has produced an award-winning documentary (self-funded), with the same name that will air on public television this fall. The documentary covers the spectrum of pain care, and as he says, “The art is in the story.” He hopes the movie “Cake” (love it or hate it) will affect the dialogue on chronic pain the way the Philadelphia Story paved the way for AIDS awareness. As Dr. Webster says, tapping into our emotions is the driving force for change, not science. This is evidenced by the effect media coverage on “The Politics of Pain.” His documentary approaches the right side of pain, the Painful Truth. Watch for its announcement. I know I will.


I have the extreme pleasure and opportunity to know people who are fighting for truth, justice, dignity, social conscious, and treatment for each of us living with chronic pain. I met with Dr. Bob Twillman, Dr. Lynn Webster, Kim Kimminnau, Ann Corley, Orvie Prewitt, my fellow patient leaders at the Relieving Pain in Kansas City, and so many others. I am perpetually energized by these positive people with a common goal to change the way pain is perceived, judged, and treated. 

What Can You Do?

Feel the empowerment of being a change agent by joining a cause that will make a difference for millions of Americans who suffer daily with pain. 
  • Find out more about advocacy on my website, here
  • See what the Center for Practical Bioethics is doing, here.  
  • Join the PAINS Project, here

About the Speakers

Janice Lynch Schuster, et al. Representing people who live with chronic pain

Sunday, May 3, 2015

Ensuring Patient Access and Effective Drug Enforcement Act of 2015 - S. 483 H.R. 471 A Template Letter by Celeste Cooper

Important legislation for the pain community is upon us. Please contact your senators by following this link.

Ensuring Patient Access and Effective Drug Enforcement Act of 2015
Senate Bill S. 483, HERE
House of Representatives Bill H.R. 471, HERE

An article on H.R. 471 in laymen s terms by PR Web, HERE

RE: Ensuring Patient Access and Effective Drug Enforcement Act of 2015

S. 483 and H.R. 471

Dear Senator __________

Please support the pain community, as your constituents support you, by voting for Senate Bill 483 (S. 483) and the House of Representative Bill 471 (H.R.471).

People living with chronic pain are being greatly affected by their inability to obtain the medications they need to help them function and lead productive lives. We need collaboration between patients, law enforcement, pharmacies, prescribers, advocates, and others to address the problems of addiction, while preserving treatment options and dignity for people who live with chronic pain and manage their care responsibly, the silent majority that do not make the headlines.

Drug monitoring programs have no evidence that they are working, so why are we spending extraordinary amounts of money on these programs? Insurance carriers are refusing to pay for accurate testing, and patients cannot bear the burden of this cost. It is unethical to deny treatment because they do not have the ability to pay. We cannot keep doing the same things expecting different results. Wouldn’t this money be better spent on programs for those who live with addiction? These people are also being underserved because current treatment programs are not based on patient outcome. They are based on ability to pay.

This is just a sampling of the things that can be addressed to improve both addiction and pain care, but it cannot be accomplished without a collaborative effort. Senate Bill 483 and H.R. 471 are steps in the right direction for serving all people in need.

I look forward to hearing how you plan to support the patient community. Please feel free to contact me by phone to discuss this important issue.


Saturday, May 2, 2015

May Awareness Event for Fibromyalgia and Other Invisible Illnesses-An Interview with a Disability Attorney by Celeste Cooper

Each year in May I make an effort to do at least one interview to raise awareness for fibromyalgia and other invisible illness. This year I am the interviewer. I picked this topic for two reasons:

  1. I frequently see patient comments regarding denial of application for disability benefits.
  2. Anthony Castelli, Esq., attorney in Cincinnati, Ohio, was willing to give the interview to help patients understand the process.

Anthony Castelli
Attorney at Law

If you or a family member or friend has significant symptoms or disease that interferes with their ability to work, this is an hour you don’t want to miss.

Attorney Anthony Castelli has more than thirty years experience with:

  • Social Security Disability
  • Personal Injury
  • Worker’s Compensation
  • Wrongful Death

We discuss:

  • The difference between SSI and SSDI
  • Long-Term Disability Insurance and SSA disability
  • When to apply
  • How to apply
  • Turned down, now what? The Appeal Process
  • The benefits of having a disability attorney
  • How the attorney is paid
  • Primary doctor vs. Expert Witness
  • Engaging the primary doctor to write a report
  • The most important thing to remember
  • Resources

You can find the interview by following this link:

*Disclaimer: The time delay on my end is due to my internet connection being from a phone hotspot. I apologize for any inconvenience.

You can find more information:

~ • ~ • ~ • ~ • ~ • ~

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

NEW Website:

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

~ • ~ • ~ • ~ • ~ • ~

Saturday, April 25, 2015

Entering the World of Now in Recognition of Poetry, QiGong, T’ai Chi, and Yoga Awareness Month

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


Living in the present can seem daunting to those of us who live with chronic pain, but when we focus on the beauty around us, we can take a respite from our physical being. Our perception is our reality. In addition to writing books and advocating, I write poetry. I am not a great poet, but finding words that tell a story lifts me up in the present. I am not thinking of things that have happened in the past, or wishing for the future, instead I am fully vested in the now.

Entering the World of Now © by Celeste Cooper

Mindful presence wraps me in a legacy with the sagest of souls.
Inspired by words of wisdom my mind flows naturally with their goodwill.
Great people influence my desire and curiosity for being present.
There is only attendance and resolve when I live in the world of now.

In every birth of every living thing, there is purity, a truth.
Innocence bares the gift of a new beginning.   
Many tongues speak the language of nature’s primal significance.
A flower speaks as it reaches for the light; watch it grow in the world of now.

My spirit is filled with the melody of joy offered by the songbird.
Gratitude is in knowing its influence in finding my song to sing.
A soul soars to the new heights by appreciating the offerings of its existence.
Listen closely; my voice is shrouded with loveliness as I enter the world of now.

Talk about living in the moment, “The World of Now,” recognizing April as poetry, Qi Gong, T'ai Chi and Yoga awareness Month, all these things can be particularly helpful for people living with chronic pain.

Watch the trailer by our friend and fellow author, internationally known T'ai Chi and Qi Gong expert, Bill Douglas, on my NEW website, Bill developed the stress management program at Kansas University, is an expert for Dr. Andrew Weil, and he has been kind enough to endorse several of our books.

You can find the trailer on my Qi Gong Page, here. Learn more about T’ai Chi on my new website, here (you can learn more about him by clicking on the link with his name, Bill Douglas). Find information on Yoga, here.

In healing and hope, Celeste

~ • ~ • ~ • ~ • ~ • ~

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

NEW Website:

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

Saturday, April 18, 2015

Can Aerobic Exercise Reduce Fibromyalgia Symptoms? by Celeste Cooper

The question, “Can Aerobic Exercise Reduce Fibromyalgia Symptoms?” was asked on Sharecare and you can read my answer here. But I thought maybe I should elaborate.

The answer to this question is tricky because there is evidence that aerobic exercise can reduce fibromyalgia symptoms, and there is evidence to suggest it can increase fibromyalgia symptoms.

The Cardiovascular System

In regards to helping symptoms, aerobic exercise is movement that increases your heart rate. Because the heart is a muscular pump, making it work harder improves the strength of the heart walls and makes it more efficient. The heart can eject more oxygen rich blood to the cells. Cellular oxygen deprivation has been noted in some studies. Exercise also releases the feel good hormones thought to be in short supply for those of us who have FM.

The Lymph System

Exercise or movement of any kind is the engine, the only engine that drives the lymph system, which is responsible for gathering, filtering, and removing cellular waste from the body. When the lymph system is working right, or we aren’t moving enough, swelling occurs in our extremities, a source of complaints for many people living with fibromyalgia.

The Muscles

Myofascial pain syndrome (MPS) is a condition that can be misdiagnosed as fibromyalgia and it can coexist with fibromyalgia. If you have myofascial pain syndrome, make sure your muscles are well cared for and returned to their normal resting length before exercising, including weight bearing exercise. Otherwise, you may feel the exercise is worsening your symptoms when it is actually affecting a myofascial component. Healthy muscles ward of the trigger points of MPS, so exercise is good for prevention, but not for treatment.

Autonomic Effects

Some fibromyalgia patients have a condition called postural orthostatic hypotension. If you have this condition, aerobic exercise can harm you. Other studies suggest that some FM patients have a loss of heart rate variability. In other words, when you exercise, you cannot reach your target heart rate, through no fault of your own. You body is not responding as it should.

What Next?

The best way to treat our body is to move it. Maybe we don’t tolerate exercise, maybe we tried too much too soon, maybe we have a joint problem that keeps us from doing moderate aerobic exercise, but even our joints do better if we move them. The best thing to do is move and use common sense. Nobody— nobodyNOBODY should start exercise without slow conditioning; magnify this by 100 for those of us who live with fibromyalgia.

When we say baby steps, really think about how a baby starts to walk, develop muscle slowly with certain movements.

So the short answer to “Can Aerobic Exercise Reduce Fibromyalgia Symptoms?”

  • One size does not fit all.
  • Start low and go slow.
  • And by all means—MOVE (even if it means exercises done in bed or requires the assistance of a caregiver).

~ • ~ • ~ • ~ • ~ • ~

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

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

Website: (COMING)

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

~ • ~ • ~ • ~ • ~ • ~

Friday, April 3, 2015

Make a Public Comment on the National Pain Strategy by Celeste Cooper

The National Pain Strategy is out. 
You can view it and download it here

Public comments on the draft National Pain Strategy must be received no later than 5 p.m. EST on May 20, 2015. Written comments sent electronically are preferred and may be addressed to

Following is mine.

To whom it may concern:

I agree that collaboration between primary and pain specialists is helpful in some cases, though I do not believe it is mandatory, and this is why.

  • Many pain specialists are only interested in interventional care.
  • Monthly visits for the pain patient who uses a non-escalated dose of opioids over a period of years, for instance, is time consuming and costly to the patient and society.
  • Forcing patients into a chronic pain program that have not had any red flags, are not a safety risk, could create perceived stigma where there was none.
  • To think that a primary physician cannot complete continuing education courses for management of mild to moderate chronic pain is ridiculous.
  • Primary physicians are on the front lines. They will be held accountable for prevention strategies, but they aren’t able to make assessments for treating pain? This seems like tying their hands behind their backs. Board certified family physicians should not be segregated from treating uncomplicated chronic pain independently. Who is better trained in meeting the biopsychosocial needs of a patient?
  • Certainly, complicated chronic pain should be under the supervision of a pain specialist, however not all patients meet this criteria, and not all pain specialists take a biopsychosocial approach. It would be interesting to have the data on this and I am grateful you are doing just that.

What I like as an RN and a Chronic Pain Patient

  • Core competency in treating complicated chronic pain.
  • Addressing the stigma of chronic pain.
  • A biopsychosocial model.
  • Collecting data that will improve outcome based treatment.
  • Recognition of the need for programs that address patients as a whole.
  • Studying chronic pain as a disease.
  • Advocating for complimentary treatments that work, with the goal of making them accessible to all patient regardless of ability to pay.

Playing Devil’s Advocate

Standardizing electronic records in a free corporate society may not be possible. This should have been planned out before it was ever initiated. I have physician family members who tell me EMRs will not be practical as long as there are so many different computer programs.

Have you ever taken any of the alternative drugs offered? Why aren’t we equally concerned about the abuse of drugs like Neurontin® or Lyrica®? There was not one mention of these drugs in this report. Isn’t focusing only on opioids stigmatizing?

Will all insurance companies be willing to pay for integrative treatments? If not, which is most likely, doesn’t this mean those of us without deep pockets will not be able to afford the complimentary care our physicians expect? It is difficult to get Medicare to pay for TENS units and supplies. But they will pay for interventional procedures, some that are costly to society and have not been proven to bring any lasting effects. How can we curtail spending if we put all pain care in the hands of already overloaded pain specialists?

How can we force private practice pain physicians to adhere to and develop a clinic that takes a biopsychosocial approach to treatment? Is this not a violation of free enterprise of our nation? Not that I don’t agree this is the right approach, but in practicum, is it possible?

How are we to stop the stigma associated with chronic pain if opioids are seen as bad? The patient’s who benefit from opioids, that do not require escalated doses of many years, and do not tolerate alternative drugs, like myself, are not identified in the data. Without this data, won’t chronic pain always have an associated stigma? The last data I saw was that 70% of patients using opioids would not abuse their medications. Can we expect future data on this?

How many overdoses occur from under-treatment of pain? Can we expect a comparative analysis? Why is opioid treatment for chronic pain left out of the conundrum of opioid statement? Isn’t this stigmatizing?

Despite best efforts, chronic pain will exist. When the patient does approach their pain in a biopsychosocial way (I write books on this and practice it), and their pain persists, will they feel inadequate, isolated, and depressed, all the things a multimodal approach is supposed to fix?


Looking at chronic pain as a public health issue is the right approach in my opinion. It will avail resources that wouldn't otherwise be accessible. The report is comprehensive, there will be roadblocks in implementing all the suggestions, but hopefully generations to come will benefit. As an educator, I was impressed on seeing short-term to long-term goals. This strategy provides a mechanism for reassessment and revision.

Chronic pain devastates the lives of people living with it. Patients did not ask to have injury, anatomical defects, or disease processes that create the chronic pain web of deceit. Acceptance is necessary for forward momentum, and that doesn't include just the patient, it also includes their provider, their families, their employers (if they are lucky enough to have one), their friends, and society in general.

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
~ • ~ • ~ • ~ • ~ • ~

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


~ • ~ • ~ • ~ • ~ • ~

"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

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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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