Thursday, March 21, 2013

VOTE for the AFFIRMATION Contest! We need YOU!

A big “THANK YOU” goes to each of you who took the time to submit your personal affirmation.  Reading how each of you focuses on positive ways of dealing with hardship is inspiring. We never know how far our words go or how many hearts they reach, to know you are an instrument in that healing has been a personal gift.

Now, on the next step, please help us choose the winner of the Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain affirmation contest. 

Voting ends at midnight March 31st.

Where to vote:

You can vote n the comments here on the blog.
Linked –In Poll “What is your favorite affirmation?”

  • National Fibromyalgia and Chronic Pain Life Magazine
  • Pain Sufferers Speak
  • FibroMadness
  • Patient Advocate Foundation
  • Power of Pain
  • FibroLIFE
  • Chronic Pain Support

How to Vote

In the comments area simply vote for #1, #2, or #3, there are not in any particular order.  

#1 “Bring on the day so I can make the most of the moments.
      Some may hurt but others will take your breath away. “© 

#2 "Be kind to yourself. Respect who you are.
      Walk in the light of your fearlessness. "© 

#3  “Step by step, I'm following my path towards optimal health
       with grace, gratitude and grit."©

The Prize

The author of the winning affirmation receives:

  • A copy of Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain,              FALL Devotions.
  • Their affirmation with their chosen signature line in print in the next edition, Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain, SUMMER Devotions.

Important note: These affirmations are the original words of the author and are not to be published without their signature, which has been omitted here solely for the purpose of contest anonymity.  All three authors will be identified when the contest is completed so credit can be given.

Thank you again for your devotion to the contest.  Though we may not always reach our full potential because of pain, our progressive work to achieve a worthy goal is something we command, it gives of power, when things seem out of control. Learning the see opportunity from adversity by writing personal affirmation is what fills the gap often created by the struggles in our painful life. 

In healing and hope, Celeste

You can find tips for writing affirmations at:

Tuesday, March 12, 2013

What the heck is a syndrome?

A syndrome is a collection of symptoms that remains the same throughout a particular patient group, but the cause is unknown. These might include fibromyalgia syndrome, chronic fatigue syndrome, Cushing’s syndrome, irritable bowel syndrome, AIDS, Asperser’s syndrome, Barrett’s syndrome, carpal tunnel syndrome, leaky gut syndrome,  paradoxical orthostatic tachycardia syndrome, Sjögren’s syndrome, Ehlers-Danlos Syndrome, urethral syndrome,  restless leg syndrome, Raynaud's syndrome, CREST Syndrome (a form of Scleroderma), complex regional pain syndrome, and many more. You may not realize it, but even rheumatoid arthritis is considered a syndrome. 

Some disorders are confusingly called diseases, when they are actually syndromes.  Diseases generally have a known cause. And syndromes, even when we know something about them are still syndromes. For instance, research shows there is an excessive release of acetylcholine at the neuromuscular (nerve to muscle) junction of a myofascial trigger point, but myofascial pain syndrome is still considered a syndrome. This is because we don’t know what causes the excessive release of acetylcholine, a neurotransmitter, the chemical messenger between the body and the brain.

When invisible disorders have no biological marker, a test that says you specifically have the disorder/syndrome, and sometimes when they do, there is always the doubting Thomas.  We think these folks mission in life is to prey on our psyche.  Why is this? Pretty much the answer is simple; they don’t experience our pain, lack of restorative sleep, life altering fatigue, severe chronic headache, a bladder that is constantly on fire, constantly cold extremities, or feel like everything they touch is barb wire, just to mention a few symptoms of invisible illnesses. Syndromes are not seen as real because some people operate on the assumption that if you can’t see it, it isn't so, even some healthcare providers migraines were once attributed to a woman’s frenzied inability to cope with stress.

Newer research into genetic markers will plow under the misconceptions of those who do not share our syndrome. In the mean time, it is up to us to support those who support the research.  Orphan disorders of all sorts face the same challenges.

In healing and hope, Celeste Cooper, RN author, patient, activist

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

Sunday, March 10, 2013

Headache & Migraine

Headache & Migraine

LiRIS, Disability Delays, New Treatments Approved, InterStim vs. PTNS, Valentines Day Ideas for IC, Clinical Trials & More

LiRIS, Disability Delays, New Treatments Approved, InterStim vs. PTNS, Valentines Day Ideas for IC, Clinical Trials & More

February 2013 - ICN E-Newsletter, terminates LiRIS clinical trial,  FDA expanded the approved use of Botox, The U.S. FDA has approved [OTC} Oxytrol for Women,... cost of sacral nerve stimulation (i.e InterStim) with the cost of PTNS, … chronic pelvic pain and pre-term delivery …post menopausal women- recurring UTI's with decline in estrogen was making vaginal and vulvar skin more susceptible to infection. 

Friday, March 8, 2013

Biological marker for fibromyalgia is challenged- No surprise

A unique immunological pattern has been found in fibromyalgia in a study done by Behm, et al, 2012. Full article in pdf here.

"The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM."
Bruce Gillis, MD, and member of the clinical faculty at the University of Illinois, Chicago College of Medicine, has taken the results of this study of which he was a part, to another level. He has developed a blood analysis, the FM/a® Test, which is capable of diagnosing FM. (Dr Gillis is the founder of the Epic Genetics, where the blood test is conducted.) 

As I read the study and the following publications, I braced for what I knew would follow.

Questions arise over new diagnostic test for fibromyalgia

As with all good science comes challenge, as it should. I agree with Dr Daniel Clauw that replicated studies are necessary.  Dr. Gillis may or may not have jumped the gun on objective blood test, but the evidence is significant.  Though this is the first study of its kind, it certainly is not the first study suggesting that diminished cytokine response has been implicated in fibromyalgia. Consistent cytokine abnormalities, though none as significant as seen in this study, suggest an immunological factor. This would explain why fibromyalgia clusters with other neuro-endocrine-immunologic disorders.  

As I have written, yet to be published, this is the beginning of some very interesting research.  Investigations that will move us down the right path.  It does not negate the involvement of the HPA axis in FM.  My opinion is that neuroimmunologic science suggests it is part of it.  When the hypothalamus-pituitary axis is dysfunctional, as seen in repeated studies of FM, it affects the neuro-endocrine and immunologic responses, and involvement of the autonomic nervous system.  We know the central nervous system is bombarded with chronic pain impulses from the periphery (from conditions such as  myofascial pain syndrome, known muscle abnormalities, or from cervical nerve root impingement another pain impulse aggravator suggested in FM). The fibromyalgia brain does not respond the same way when compared to other chronic pain disorders.  Many people with chronic pain share centralization, which is amplification of pain, but do not have any of the comorbid disorders associated with fibromyalgia. That is where the difference lies, that is the defining factor of HPA dysfunction resulting in neuro-endocrine and immunologic responses. 

Dr Frederick Wolfe suggests that these same results might be found in other illnesses.  This bears mentioning and I agree.  We need more research.  However, this study does suggest that fibromyalgia patients do have an immune dysfunction, whether it shares the same immune dysfunction with other illnesses is up for debate. I believe we need to focus on this, it proves that fibromyalgia is a biological disorder." Dr. Clauw and Dr. Robert Bennett, Dr. Roland Staud, and many others who have studied fibromyalgia diligently for many years all agree that fibromyalgia is NOT a psychological disorder.

Dr. Dan Wallace, a clinical professor of medicine at the David Geffen School of Medicine at UCLA based at Cedars-Sinai Medical Center,  says,

“The elegantly designed study by Dr. Gillis and his co-investigators represents a milestone on the path our group charted 25 years ago when we first hypothesized that cytokines play a role in fibromyalgia. It is hoped that this and future work sponsored by EpicGenetics will lead to a greater understanding of how the immune system, fatigue, sleep disorders, chronic stress and pain interact in patients with fibromyalgia and related disorders.”
Here is the hope in this message.   I feel optimistic that this biological marker will prove itsself because of the significant results between the FM and the healthy control group in the study. Fibromyalgia can no longer be seen as a psychosomatic disorder.  We will not have to be concerned about an ICD classification, or how fibromyalgia could be interpreted by the APA (American Psychiatric Association) Diagnostic and Statistical Manual of Mental Disorders, DSM-5. (See Who is the WHO, and Why does it Matter to You?).   Why is this important? Because these classifications are used to track data, ultimately determine treatment/referrals, and insurance reimbursement.

Fibromyalgia is now recognized in the Social Security Administration Blue Book, “Listing of Impairments,” and having a biological marker, whether specific to fibromyalgia or not, is a really big deal for the lives of many fibromyalgia patients whose symptoms are so severe they are no longer able to work. 

Yes, a glorious storm is brewing.  I am jubilant, even giddy, because, without adversity there is no opportunity.” Questions such as those proposed and those yet to come deserve merit, it means we will see more target rich research.  We will continue on in our current treatment plan, just as those with other syndromes, such as rheumatoid arthritis, systemic lupus erythematosus, and many others for which we have no cure.  The test may be cost prohibitive and maybe we should exercise patience until replicated and larger studies are implemented. If it bears out, then insurance companies should not deny reimbursement. But until then, this research and the test developed by Dr. Gillis is a really BIG deal, researchers have been working on a biological marker, have felt it was around the corner and the corridor of light could be staring us straight in the face, there is hope.

In healing and hope, Celeste

For more information on the test

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


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Fibromyalgia and Chronic Pain Life, Cover article, Mar/April 2013

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

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Sorenson M, Jason L, Lerch A, Porter N, Peterson J,  and Mathews H, "The Production of Interleukin-8 is Increased in Plasma and Peripheral Blood Mononuclear Cells of Patients with Fatigue," Neuroscience & Medicine, Vol. 3 No. 1, 2012, pp. 47-53.

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Celeste's Website

Celeste's Website
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