Friday, December 28, 2012

Exercise and Chronic Pain: Complimentary Roommates

The article includes:

What is exercise?
When to exercise
Types of exercise
Movement and tolerance
Finding your target heart rate(THR)
Effects of exercise

Due to the number of linked resources on my website, please refer to the following link.

Thursday, December 6, 2012

When pain and disability is life limiting. The Seven Rules

December 3 was International Day of Persons with Disabilities, which is recognized by the UN, so it is only fitting that we talk about how disability affects our lives.

Many people with chronic pain and invisible illness try to remain in the workforce in spite of their dysfunction for various personal reasons. What statistics do not show is how many of us are aware of and access available resources.

We are defined by what we do and it is depressing when that part of our life is threatened, we want to be financially solvent.  Many of us cling on to our jobs by our fingertips successfully, but we need help. In chapter seven “Approaching the System Systematically” we discuss the programs available to assist us.

  • The Americans with Disabilities Act (ADA)
  • Five Areas of the ADA
  • The ADA General Rule—Statute 42 U.S.C. §12112(a) Qualified Individual, Essential Function, Reasonable Accomodation
  • United States Department of Labor (USDOL)—Equal Employment Opportunity, Undo Hardship
  • The Equal Employment Opportunity Commission (EEOC)
  • Patient Rights
  • Miscellaneous Programs and Help, such as  Workers’ Compensation, COBRA, Private Disability Insurance, Employee Assistance Programs (EAPs), ERISA, FMLA, Vocational Rehabilitation, and Temporary Assistance Programs
  • Confidentiality and HIPAA

(Cooper and Miller, 2010)

Rule #1 - Know what programs are available.

The fact remains however, few employers will jump over backwards to meet your needs when there is a healthy person who doesn’t require all the baggage that goes with a chronic illness. We go into great detail in the book (Cooper and Miller, 2010) as to how these programs work and don’t work for people with disability. 

The alternative – applying for SSA benefits

Programs such as Social Security Disability Insurance (SSDI), for people with a work history, and Supplemental Security Income (SSI), for the disabled without a work history, are available, but it isn’t as simple as that.  The process has many rules (see links provided below).

So what happens when you fall off your own fiscal cliff?

It is imperative that you have a paper trail (medical record) that documents specifics on your ability to function. For instance, multiple sclerosis is in the "Listing of Impairments" (Soc Sec Blue Book) and now fibromyalgia is too, however, that does not mean one with MS or FMS automatically qualifies for SSDI or SSI. The progression of the disease and how it affects you personally and your ability to perform work (SSDI) is what makes you eligible for benefits. 

Rule #2 - If it isn’t in your medical record, it’s not so.

All of your symptoms and life modifications should be presented to your physician for your medical record. Doctors are very busy and one that supports you should be glad to have any of the various recording tools we present in our book. (Cooper and Miller 2010)  This information will also be helpful if you need to appeal, most initial applications are turned down. See chapter seven for: WINNING A SSDI APPEAL - Getting Turned Down—What Next?

Among other tools in chapter seven are:

Interaction Worksheet for Important Calls and Meetings [with the SSA]
Table for Determining Disability Status for Those Limited to Sedentary Work
Table for Determining Disability Status for Those Capable of Light Physical Work

Rule #3 - Provide evidence of how your symptoms obstruct your daily living, and what alterations you have made to survive. Get your documentation into your medical records.

MOST IMPORTANT! When entering the appeals process, hire an attorney that specializes in chronic pain and invisible disorders, it can make all the difference in the world.

Rule #4 - Hire an appeal attorney that is familiar with chronic pain and invisible illness.

Applying and going through the process of SSDI can cause great financial burden on our household. Things to be considered are loss of income, the stress of the process in general, and the cost COBRA insurance (which you should make every effort to keep because you will need continued documentation that your disorder is not improving while going through appeal.)

Chapter Seven, "Approaching the System Systematically” has all the information on what Social Security requires to make a determination.  Fill out the  questionnaires at the end of each chapter, keep track of all the tests and doctors and the results on the various forms provided. Have your primary doctor give you their narrative report; you will have your ducks in a row. Our publisher has given permission to copy these documentation tools for your personal use.

  •         Medication Log
  •         Symptom Inventory Survey
  •         Anatomical Diagram of Pain
  •         Health History Log
  • ·         Treating Health Care Provider Log
  • ·         Chronological Health Record

            (Cooper and Miller, 2010)

Clarifying assumptions

I was shocked when I got a copy of my medical record from one of my specialists of 25 years.  Unbeknownst to me, he consistently documented no changes in my medical record. I copied the “Residual Functional Capacity Assessment” (below) and reviewed it with him. He filled it out signed it and put it in my medical record.  He knew all the things they were asking, but many times physicians are not savvy, instead they run the other way when asked for their input.  Reviewing your functional status is not only good for your medical record; it should be a periodic review for your physician, so he/she understands how pain and illness affects you.  This is an easy tool to help everyone involved.

Rule #5 - Don’t assume anything.  Making the information available to your physician should be welcome and it helps you track your successes and failures too.

Functional Impairment

The Social Security Administration's (SSA) wants to see how illness affects your ability to function and they want objective measurable criteria.

Have you noticed a steady decline in the way you form words, transpose numbers, letters and words or have difficulty putting an intelligent sentence together?   It can be frustrating and life altering. The work that once took us an hour now takes us all day, possibly days and needs to be broken down in small manageable increments.  If you notice you consistently have to set a timer to remind yourself of something in 3 minutes, or leave items out as triggers to your brain to complete a simple task you used to take for granted, be sure you bring this up.  A neurocognitive exam is in order.  The exam will document attention, memory, recall, response to repetitive behavior, and how the results relate to others of your age, experience, and education. It should be administered by a forensic neuropsychologist. A forensic neuropsychologist is known by the court and they have tremendous credibility.   It will be bitter sweet, seeing the results in black and white validates your decline, but it is also reassuring to know you are not off your rocker.

Rule #6  - Brainfog? Get a neurocognitive exam.

  • What is your cognitive-neuro score?
  • Does altered sleep interfere with your ability to cope, if so, how?
  • How long does it take you to prepare simple tasks?
  • Do you have to have medical equipment to carry on each day?
  • Are there days when you can’t drive and why?
  • Are you able to lift, carry, stand, use your arms for long periods, if not, why?
  • Are your symptoms affecting your relationships and how?
  • Do you have other conditions that affect your pain and function?
  • What adjustments have you made to accommodate your personal needs?

These are an example of what the SSA is looking for, there are more in the book, but the idea is to get you thinking about how your illness and pain are affecting you. Write down each thing as you notice it.  We evolve into this new person because we must, don’t lose sight of how your life is affected.  I mostly talk about how to cope, and say putting such focus on these things is unhealthy, but this is the time you must focus.  As I said before, the process is itself is difficult.

SSDI and Their Expert Witness

The SSAs own doctors said I should not do anything that requires repetitive long term motion of my upper extremities and hands, (boy do I ever know that) and that I should not stand or sit for prolonged periods. This was THEIR doctor. Yet in my denial letter they suggested I get a job as a "doll maker." Obviously the system is overloaded. Don't stop, file an appeal.

Rule #7 - Don’t give up.

The Administrative Law Judge (ALJ) may ask for expert testimony from an independent source. Most of these experts do not have direct experience with invisible illnesses. Most of us go months or years without a diagnosis and have difficulty finding THE doctor that knows how to diagnose our condition, so you can imagine what the ALJ’s “expert witness” knows about how our illnesses affect our lives, let alone our ability to stick to the regimented schedule of work duties.  The laws protect us somewhat because the ALJ should give more weight to the opinion of the claimant’s treating doctor than to the opinion of one of their doctors. However, the judge’s expert witnesses have more impact on the ALJ’s decision when the claimant’s physician has not adequately addressed and documented key issues in your medical record.

"When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, and set sail once more toward your coveted goal."
--Napoleon Hill

Paying it forward, in pain, for pain, Celeste, RN, author, pain patient/activist, educator, and fibromyalgia health expert.

All blogs, posts and answers are not meant to replace medical advice.

Cooper, C and Miller, J.  Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press. 2010.

Helpful Links:



SSA - Your Ticket To Work

Social Security Application

Social Security Blue Book
Listing of Impairments - Adult Listings (Part A)
Listing Of Impairments - Childhood Listings (Part B)

The SSA  Physical Residual Functional Capacity Assessment

Fibromyalgia Residual Function Questionnaire

Monday, December 3, 2012

KaleidoPain NEWS: Ever Changing Colors of Chronicity 12-3-12

Have the KaleidoPain News and my blog delivered right to your Inbox by subscribing to the RSS feed.

Today is December 3 - International Day of Persons with Disabilities  (Recognized by the UN)

“A dreamer is one who can only find his way by moonlight,
and his punishment is that he sees the dawn before the rest of the world.”
~Oscar Wilde

(click on titles below to go directly to the blog)


Ten People to Follow on Twitter for Thyroid Information By Mary Shomon


Dr. Weil’s interview with author, T’ai Chi expert, and founder of International T’ai Chi Day Bill Douglas, who was kind enough to do the inside cover endorsement for our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection.


By Clarissa Shepherd • • November 28, 2012

FEATURING Q&A by Celeste at Sharecare

Read my Sharecare answer to:

 *Don’t have a Sharecare account?  Just copy and paste the question in the ask a question tool bar at




I am honored to have a featured article on writing an “I AM” poem in the National Fibromyalgia and Chronic Pain Life.  Don’t miss the new issue.  There is tons of helpful information as always.  Don’t miss the “Self Talk” article. It came just at the right time for me, after a heated discussion of advocacy. I needed reminding of the healing qualities of gratitude.  Don’t miss a single page.  In healing and hope, Celeste 

Paduka on the map through FibroLIFE, a support group that has a national outreach.


by Mark Maginn, Columnist on July 8, 2012

If you know someone or have ME/CFS you won't want to miss this presentation on ME/CFS biology student.  Kuddos to P-A-N-D-O-R-A for raising the "next generation" right!  In healing and hope, Celeste

Not on Twitter?  Follow my tweets from Celeste Speaks 


Neural Stimulation for Autoimmune Diseases. Biomedicine News

Breakthroughs In Lyme Disease Research

Quick tip for hand pain from Breaking Through the Fibro Fog


Celeste’s review of November Research, some with personal comments. This will be the last research monthly review due to the amount of time involved and the lack of participation, new priorities evolve.  Enjoy!


The holidays are upon us and we can support the National Fibromyalgia and Chronic Pain Association without paying a dime from your own pocket?  How?  It’s easy, just shop at your favorite outlets directly through the NFMCPA website. 


5.0 out of 5 stars Inspiring !! November 20, 2012 By Ronda Blacker
This is an "uplifting" book that is well written. I even followed the author's suggestion and wrote my own poem !

Very comprehensive and I highly recommend it for anyone searching for a balanced approach for the treatment of these diseases.”  (Dhara Lemos, Lotus Guide )


Do you have a special book that has helped you?  Pay it forward by writing a review on Amazon, and send it to me so I can post it in the newsletter.  You can contact me through my website,

POINT TO PONDER    (Inspired by the daily devotions in Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain.)

Do I sweat the WHAT Ifs?

Paying it forward, in pain, for pain, Celeste, RN, author, pain patient/activist, educator, and fibromyalgia health expert  

Visit my website for more helpful information.
This blog available in RSS feed

*This virtual newsletter is for informational purpose only and is not meant as medical advice.

Tuesday, November 27, 2012

No regrets – Finding Value in My New Life

I could regret losses associated with a chronic pain life, but regret only leads to stress, something which our body already understands biologically and struggles to overcome. 

An effective tool for combating the effects of stress is positive thinking.  So next time your stress meter is about to blow mercury into the universe, get out your tool kit.

Say no to negativity.
See opportunity in adversity
Say, “I will.”
Think kindness.
Create a positive word list.
Imagine positive energy.
Have a positive dialogue with part of your body.
Biofeedback works.
Try meditative movement.
Write an affirmation. 

Find  more helpful tips in our new book, BrokenBody, Wounded Spirit: Balancing the See Saw of Chronic Pain.  Fall devotions has been discounted for the holiday and is the  first in a series of four.  It has gotten wonderful endorsements by some heavy hitters, but we need more reader reviews.  It is for ALL chronic pain patients.  

Please spread the word. I hope you will copy and paste the blurb below and share it with those who might want to learn ways of coping with chronic pain that will perpetuate the balance we so desperately need.  

In healing and hope, Celeste
Here is our first Kindle reader review:

“5 of 5 stars. Very helpful November 20, 2012
I already bought the earlier book,"Integrative Therapies for Fibromyalgia, Chronic Fatigue and Myofascial Pain", so I got this on the recommendation of my pain specialist. It's nicely done and very helpful. The authors give suggestions, assignments and advice on a page per day basis. I like the format because I can focus on one thing at a time to help myself with my chronic pain condition. I can also go back and review information and rate my progress. I think this is a good tool for participating in my treatment

Holiday price reduction.  Kindle $2.99.  Please gift a review.

Free Kindle app for PC and androids. 

Available in Paperback.

"Essential and inspiring!" - "With heartfelt passion and self-awareness." - "Best wishes to all who use this book to reclaim life day by day." - "From the dark world of pain and suffering comes the voice of human courage." - "This will help individuals engage in their own care and personal growth. "

Monday, November 19, 2012

Fibromyalgia Not a big secret, but does your doctor know? by Celeste Cooper

Many of us have been psychologically bruised. We've endured hurtful comments by those in charge of our healthcare, family and friends; I speak for over five million Americans.  But one thing I know for certain, knowledge is our power.

Most agree fibromyalgia is due to a disruption in the Hypothalamus Pituitary-Adrenal (HPA) axis.  Big words that indicate a disruption in a major system of our brain (part of the central nervous system, CNS, which also includes the spinal cord) and its ability to properly receive sort and respond to messages from the peripheral nervous system which is everything outside the CNS. This breakdown in communication between the body and the brain not only leads to amplification (centralization) of pain, it also explains why other conditions co-occur with fibromyalgia, but not in say, low back pain (also thought to be centralized pain.)

The primary symptoms of FM are:

1)      Body-wide pain.
2)      Non-restorative sleep causing fatigue.
3)      Cognitive deficit causing trouble finding words, onset of dyslexic behavior, and memory problems.   

If your healthcare provider tells you other symptoms are from fibromyalgia, they are not, but they could be due to a co-occurring condition, also called comorbid.  For instance, feeling cold could be attributed to Raynaud’s syndrome or hypothyroidism.  The same is true for dry skin and mucous membranes, which might indicate, SICCA, Sjögren’s or hypothyroidism.  Bloating could be due to small bowel intestinal overgrowth, IBS, or leaky gut syndrome. Visual disturbances could be associated with migraine, both silent and classic, or knotted up pieces of muscle fiber (called myofascial trigger points) in the face or neck, etc.  It is important for your doctor to understand the comorbid conditions, because the criterion for diagnosing each of these disorders is specific and having them appropriately treated will minimize aggravating factors to fibromyalgia, your pain and ability to cope effectively.

Conditions to be considered are:

 ·         Chronic fatigue syndrome/myalgic encephalomyelitis·         Hypothyroidism
·         Raynaud’s
·         Adrenal problems
·         Myofascial Pain Syndrome
·         Allergies
·         Bowel  -  irritable bowel syndrome (IBS),  Small intestine bacterial overgrowth (SIBO), Leaky Gut Syndrome (LGS)
·         SICCA or Sjögren’s
·         Bruxism
·         TMJ/TMD
·         Systemic Lupus erythematosus
·         Hypothyroidism  and possible Hashimoto’s
·         Interstitial Cystitis or irritable bladder
·         Restless Leg Syndrome
·         Severe headache/migraine
·         Postural Orthostatic Tachycardia Syndrome
·         Neurally Mediated Hypotension
·         Depression and anxiety
·         Rheumatoid Arthritis
·         Ankylosing Spondylitis
·         Lupus (SLE)
·         Idiopathic edema (unexplained swelling)
·         Piriformis syndrome
·         Pelvic Pain (endometriosis, pelvic floor pain, sexual dysfunction, rectal pain, vulvodynia, and impotence)

The biological aspects of FM have been greatly ignored.  Primary physicians are not always adequately trained in diagnosing fibromyalgia.  They have their own continuing medical education requirements and professional journals that focus on being adept at family and primary medicine.  If you feel you physician does not consider what I have presented here, or he/she is unwilling to look into your symptoms further, should you have them, get a second opinion.

We all need to be diligent about knowing our body, noting any blatant or subtle changes in symptoms, and to track and report them, after all, who else will care as much as we do?  Identifying and treating all aggravating factors, including overlapping conditions can have a profound impact on how we feel. 

~ • ~ • ~ • ~ • ~ • ~

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, 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,

Tuesday, November 13, 2012

100 MILLION Americans Suffer from Untreated Pain: Does your healthcare provider have the knowledge base required to treat you at all?

A recent encounter in a Linked-In discussion group has created in me another opportunity as the result of adversity.

I speak for over 100 million Americans with untreated or undertreated pain.(1) Most of us have been psychologically bruised from having a chronic pain or invisible illness.  Usually we assume this is by family member, co-worker or friend, but when it is our healthcare provider it takes on new meaning. 

Is your healthcare provider treating you with respect?

  • We need and deserve a caring approach from our healthcare providers (HCPs).
  • Many HCPs are ignorant to their role in helping us maintain a healthy attitude. I wonder if their inability is because a healthy attitude is missing in their own lives.  
  • Our HCPs should not translate their own judgments on the vulnerable.  Please remember, it is THEIR STUFF (From Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain, Fall Devotions)
  • Our personal goals are not different than theirs, we want to live a productive life, care for our loved ones, interact with those we care about, and have the financial resources to keep a roof over our heads, food in the cupboard, and care for our daily needs, including healthcare to treat a chronic condition.  Why does having pain or invisible illness separate us?
  • We do not make up our symptoms; pain creates financial hardship, and threatens our self worth, relationship with others, and our purpose. 

"If you talk to women, they tell you no one is listening, they tell them they are faking," committee chair Dr. Philip A. Pizzo, the dean of pediatrics, microbiology and immunology at the Stanford University School of Medicine, told ABC News. "One of the conclusions of the [Institute of Medicine, IOM] report is that chronic pain is not in your head. It's a disease in its own right." (2)

  • Is your HCP up to date on the research?  Ask them about their most recent continuing education course, when it was, and what it was about? 
  • Have your HCP provide you with your states patient rights. If they are not aware, make them aware.

The biological aspects of chronic pain have been greatly ignored. Physicians should be trained in integrative therapies. (3)   We need more research on the effects of chronic pain, and physicians need to put patient outcome front and center.  It seems they are being brainwashed on how NOT to treat pain.  Two decades ago, recognizing and treating pain was a requirement in the medical community.  Physicians and hospitals were chastised for not recognizing the 5th vital sign.  We must ask, “What has happened to our society to turn this around?”  

If your physician is not treating you with mutual respect, putting your physical, psychological and social needs ahead of their own prejudices and agendas, they are being neglectful.  Write this in your journal, and when you come to grips with it, act on it!

From “Relieving pain in American IOM report, 2012:

“Unequal Treatment cites three types of provider factors that might help account for such disparities in care: “bias (or prejudice) against minorities; greater clinical uncertainty when interacting with racial and ethnic minority patients; and beliefs (or stereotypes) held by the provider about the behavior or health of minorities” (IOM, 2003, p. 9). (It should be noted that a number of the patterns of undertreatment cited above also occur among women and the elderly, both discussed below.) When people perceive discrimination in their lives, that perception in and of itself is associated with greater pain according to a survey of older
African American men (Burgess et al., 2009).”  (4)

Burgess, D. J., J. Grill, S. Noorbaloochi, J. M. Griffin, J. Ricards, M. Van Ryn, and M. R. Partin. 2009. The effect of perceived racial discrimination on bodily pain among older African American men. Pain Medicine 10(8):1341-1352.

Twenty years ago,  I would never in a million years thought I would write such an article, but the culture on pain has changed, and it is up to us to do something about it. If you feel neglected or abused, find a doctor that takes their oath to do no harm seriously,  one who embraces continuing education instead of seeing it as an unwanted task.  Report them and explore resources through your insurance company, Medicare or Medicaid if necessary to make a move.  It is imperative in this culture that we become proactive in our own healthcare, and hold ourselves to a high level of accountability.  But that is a two-way street my friends in pain.  If you are in too much pain or too ill to do so, seek help from someone who can help you. We must hold those caring for us to the same level of responsibility expected from us, this is our only recourse to living our best life despite living in pain.  

(1) According to the Institute of Medicine, more than 116 MILLION Americans suffer from undertreated pain. TIME Health and Family, Report: Chronic, Undertreated Pain Affects 116 Million Americans. By Maia Szalavitz [Statistics Revised]

(2) Huffington Post. One-Third Of Americans Experience Chronic Pain

(3) IOM. 2009. Integrative medicine and the health of the public. A summary of the February 2009 Summit. Washington, DC: The National Academies Press.

(4) Institute of Medicine. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.  RELIEVING PAIN IN AMERICA, 2012. Pg 69-70

All blogs, posts and answers are not meant to replace medical advice.

Want to know more about Celeste’s books?  (click on the title)

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