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?

FEATURED BLOG or Website



HEALTHY HABITS



INSPIRATION

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 


THE ADVOCATE

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.


PAIN STRATEGIES 

ANNOUNCEMENTS

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.


IN THE NEWS

Not on Twitter?  Follow my tweets from Celeste Speaks 


NEWS FOR YOU! 

Tuesday, October 30, 2012

Are Your Power Lines Down: Sensitivity of Neuro-Endocrine-Immune Disorders




It's not enough that we hurt interrupting sleep and other important activities, but with fibromyalgia and chronic fatigue syndrome, we know our brain is on hyper alert for different reasons, but sensitive all the same.  This puts us at risk for sensitivity to light, sound, household chemicals and odors, cold, heat, and even some medications.

Particularly troublesome are those things in our environment that we have little to no control over, which has an effect on many neuro-endocrine-immune disorders

We can’t live in a dark room all day every day.  Recommendations are that we spend about 20 minutes a day in sunlight, a great source of vitamin D, which is low in some patients.  After other causes of photophobia (light sensitivity) have been ruled out, we should protect our eyes with dark polarized sunglasses with UV protection. Even snow can be a source of irritation, so wear your sunglasses or a wide brimmed hat year round. Light sensitivity, is also common in migraine so these precautions could help prevent a migraine attack too. If ambient light or a computer screen is a factor for you, a lighter tinted glass you can wear all the time may help.

Sound sensitivity (hyperacusis) or misophonia (sensitivity to certain sounds) is another matter, and it seems not only sound and tones, but several people talking at one time can be irritating.  Tinnitus, ringing in the ear, may also play a part for you, and is sometimes caused by the presence of myofascial trigger points of myofascial pain syndrome. Total avoidance may not be possible because it is important to spend time with others to combat isolation, but we can identify and avoid certain known toxic noise situations.  Carrying ear plugs for those times when you have one nerve left and noise/sound/music is unbraiding it may be helpful.  Try to keep your environment as chaotic free as possible. There are auditory retraining therapies available so you may need a referral to a specialist.

If light and sound sensitivity causes a great deal of anxiety, discuss this with your doctor, there may be a medication or supplement that can help. Deep breathing, Qi Gong, mindfulness therapy, and meditation have been scientifically proven to lower our hyper alert response.

Multiple chemical sensitivity (MCS) is best treated by first identifying offensive environmental chemicals and medications.  Once the culprit/s is identified, the best solution is avoidance.  Unfortunately, this is not always possible.  Discuss particular aggravating factors with your doctor to explore treatment options

Talk to your doctor about your sensitivities so he or she can work with you to come up with an effective treatment plan.

In healing and hope, Celeste

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

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







Saturday, October 20, 2012

Fighting for the right of choice, re: PROPS



The Physicians for Responsible Opioid Prescribing (PROPS) is petitioning the FDA to band prescribing of opioids for moderate pain, set a maximum daily dose on all opioids, equivalent to 100 milligrams of morphine, and limit chronic pain treatment with opioids for more than 90 days, under the guise of labeling.  I ask, "Is the title of this petition misleading for a reason?" What does such a petition mean to millions of Americans, those of us who rely on opioids so we can wash our hair, take a bath, eat and sleep, basic functions.  Could such an enactment by the FDA lead to an epidemic of suicide?

This petition is an effort, in my opinion, to force the market of medications NOT CLASSIFIED as analgesics upon us. For those who find alternate classifications of medications helpful in relieving pain, wonderful, but I hope everyone realizes this is a choice, not a mandate. 

OF IMPORTANCE:


Toxicology Investigators Consortium Case Registry—The 2011 Experience

 (Excerpt/synopsis) Look at the numbers.

The total number of cases entered into the registry at the end of 2011 was 10,392.
The most common classes of agents were:

sedative–hypnotics 23 %
non-opioid analgesics 21 %
opioids 17 %
antidepressants 16 %
stimulants/sympathomimetics 12 %
ethanol (alcohol) 8 %

35 deaths recorded in the Registry during 2011...reported as sole agent or in combination with other agents, were:

opioids (10) oxycodone named in 8 deaths
analgesics, acetaminophen, aspirin, NSAIDS, (8)
Acetaminophen was the most common single agent reported...

(End excerpt)


By guest author, Bob Twillman, PhD, FAPM, Associate Professor at Kansas University and Director of Advocacy and Policy at the American Academy of Pain management,


FIGHTING PROPs FDA PETITION at Left Eye Blind



As Americans we deserve the liberties set forth by our constitution.  Avoiding pain comes without conscious thought; it is a protective mechanism for physical and psychological well being.  Whether pain is acute or chronic the same applies.  Even if you choose not to use opioids to treat your pain please fight for the right of choice.  The culture on chronic pain must change in order to preserve our self esteem. Christopher Reeve was a great example of human fortitude. But I ask, "For those of us who have pain as the result of something we wish we could change, should we be demonized?" That makes about as much sense as blaming individual patients like Christopher Reeve for rising healthcare costs, because he chose to ride a horse.

If you are outraged at what this will mean to Americans living with chronic pain please let the FDA know what you think.


As chronic pain patients we have a duty to be responsible with our medication.  No pill is going to take all the pain away, but when pain and its side effects severely obstruct function, we need help. There is no doubt we need a program for educating physicians on ethical, moral, and compassionate pain treatment, and patient education on safety, expectations, and the value of integrative therapies.  However, denying our rights as human beings has historically led to underground avenues with far greater consequences. People have been known to go to extreme measures to survive.

Chip by chip we are losing our civil liberties. Even if you choose not to use opioids today, someday you may.  Please fight for the right to have that choice.

In healing, harmony and hope, Celeste
Activist for understanding and treating invisible pain/ illness with ethical, moral, and integrative care, molded by the patient’s own belief systems.



Here is my second communication with the FDA.

I implore you to disregard this abominable petition.  Patients deserve the right to have their pain treated in an ethical, MORAL, and integrative manner.  For many Americans, opioids are the treatment of last resort to help them maintain function, participate in integrative therapies that help minimize their opioid use.  Managing pain should be a basic right, not a crime as these people want to imply.  Treating pain is a PRIMAL instinct.  The new medications for treating pain, anti-seizure and anti-depressants are having horrific affects.  People are dropping like flies because of drug interactions, yet opioids which have been around for centuries are targeted. 

See Wiegand TJ, Wax PM, Schwartz T, et al. The Toxicology Investigators Consortium Case Registry—The 2011 Experience. J Med Tox. 2012(Oct); online ahead of print

FDA Tracking Number: 1jw-81hy-v9dq



Wednesday, October 17, 2012

KaleidoPain NEWS 10-17-12




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


KaleidoPain NEWS: Ever Changing Colors of Chronicity
by Celeste, RN, author, patient


Happiness is when what you think, what you say, and what you do are in harmony.
~Mahatma Gandhi




CELESTE’s BLOGSPEAK

 
Book Launch for Those Living with Chronic Pain

Monthly feature for October is CRPS/RSD



FEATURED BLOG or Website



HEALTHY HABITS




FEATURING Q&A by Celeste at Sharecare



THE ADVOCATE



PAIN STRATEGIES



ANNOUNCEMENTS

Important announcement for everyone reading this newsletter!

Following my own in-out rule something new has come in so something old must go out.  This is purely in an effort to keep myself on track and manage my own personal needs as a patient. Read on


IN THE NEWS



Not on Twitter?  Follow my tweets on the bottom of the welcome page at http://TheseThree.com

NEWS FOR YOU !

A new study published by the Bartonella research team at NC State University’s College of Veterinary Medicine–led by Dr. Ed Breitschwerdt–links Bartonella infection to rheumatologic symptoms in patients with historical diagnoses of Lyme disease, arthritis, chronic fatigue, and fibromyalgia. The study is reported in the May issue of the Emerging Infectious Diseases…. 


ROLFING THE RESEARCH 



SUPPORTING THOSE WHO SUPPORT ME

WakeUpNow and National Fibromyalgia & Chronic Pain Association: Fundraising Partners

COMMENT CORNER

Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain – Fall Devotions
Essential and inspiring! Puts us in touch with our unspoken and unacknowledged inner self-understanding that gets pushed aside when pain steals our attention.
--Jan Favero Chambers, President, National Fibromyalgia and Chronic Pain Association

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Paperback)

5.0 out of 5 stars Love this book! By Anna Leviti "A. Leviti" (MN)
This is by far one of the best books I've read on fibromyalgia...and I've read many…. I love her wisdom and sharing of her obvious expertise in unraveling how to get well and what works AND what doesn't. Good quality book and very well priced.


ABOUT THE BOOKS  



Contributing author to FibromyalgiaInsider Secrets: 10 Top Experts, 2nd Ed. 

BOOK REVIEW

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness [Paperback]

Jon Kabat-Zinn is a mastermind in understanding the impact of the body-mind connection. 

Anyone with chronic illness will benefit from the practices found in this and other books written by Jon Kabat-Zinn.  As a patient, author and fibromyalgia expert, I understand and write about the importance of physical, mental, emotional, and spiritual balance.  The works herein provide a means to achieving that end.

Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.  (co-author, Jeff Miller, PhD) and fibromyalgia expert at Sharecare.

POINT TO PONDER    

Should I write a  paragraph  about something that has awakened my senses?


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

Celeste's Website

Celeste's Website
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