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 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

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)

Monday, November 5, 2012

KaleidoPain NEWS: Ever Changing Colors of Chronicity 11-5-2012

KaleidoPain NEWS: Ever Changing Colors of Chronicity, containing news for all pain and neuro-endocrine-immune patients, healthcare providers, and caregivers. 

“The weak can never forgive. Forgiveness is the attribute of the strong.”
~Mahatma Gandhi, Unsurpassed leader of Indian nationalism in British-ruled India,
and led non-violence movements for civil rights. 1869 - 1948 

CELESTE’s BLOGSPEAK  Click here for direct links to each blog  

  • Are Your Power Lines Down: Sensitivity of Neuro-Endocrine-Immune Disorders.
  • Fighting for the right of choice. RE: PROPS.
  • KaleidoPain News: Changing Colors of Chronicity 10-17-12.
  • Human Touch: Soft Tissue and Massage Therapy in Chronic Pain Conditions.
  • Book Launch for Those Living with Chronic Pain.
  • Monthly feature for October is CRPS/RSD.
  • A Thief in the Night: Is pain robbing you of love?




Mindful awareness expands my being, encouraging me to live consciously without judgment. 

FEATURING Q&A by Celeste at Sharecare
(I hope you chose to join Sharecare and follow the links directly, however you can also go to www.sharecare.com and copy and paste the question into the ASK search box to go directly to my answers for the question.) 
*See over 280 questions answered by Celeste 


Be an advocate, vote in the CITGO Fueling GoodIn the running: 

National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels. NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.

If you are in need of direct patient services, please contact Patient Advocate Foundation at 1-800-532-5274 or on the web.



If you have or know someone who has CFS, please view and share this video testimony by Jeri McClure Kurre at the CFSAC Committee Meeting.


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