Tuesday, April 26, 2016

Call to action on S.483 and the National Pain Strategy

Update 5/8/2019: S.483 was signed by President Obama 4/19/2016. An update will be coming as time allows. However, please follow the link to the letter to President Obama from PAINS. While research on addiction is important, we need money allocated to investigate treatments for chronic pain that includes alternative therapies, and yes, opioids. Chronic pain affects far more people than addiction, yet few seem to realize that. We need evidence that will ensure access to medications that are available now. 


Following is my letter to President Obama, my state senators and representatives. Please join me in asking your legislators to pass laws that will provide chronic pain patients the care we need and change how pain is perceived, judged and treated in America.  Let them know you want them to support legislation that coherently and collaboratively addresses all aspects of pain. Let's bring research funding, proven integrative care, and access to medications to the table. Let them know how you want them to respond when legislation passes to them. Send them the letter from PAINS to President Obama, as I have.  You can find contact information for your legislators on my website at: http://www.celestecooper.com/sample-advocacy-letter.html


 
“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; 
they are united by a secret bond.” 

- Albert Schweitzer 



Dear____

As an RN, chronic pain patient, advocate, writer, and published author of self-help books for coping with chronic pain, I ask that you please read the letter sent to President Obama from the Pain Action Alliance to Implement a National Strategy asking him to make the finances and tools available to implement the National Pain Strategy. Chronic pain patients and those suffering from opioid addiction deserve compassionate, effective treatment. I have lived with chronic pain since childhood, having suffered life-long chronic migraine. Now in my “golden years” I suffer from more than one chronic pain condition, two for which we know little about and one that is extensive and inoperable. To withhold the medication that allows me to do the things I write about or to look at me differently because an opioid is the only medication that helps me is inhumane. To make decisions based on media sensationalism instead of reliable evidence is not democratic, nor is it the values this land is supposed to stand for. It is equally deplorable that addicts are kicked out of treatment before they are ready. Mental health care in the United States is not outcome based; it is driven by ability to pay. These things must change, but they will not unless we have your support.

[US Senators]
Please enact legislation such as S.483 introduced by Senator Orrin Hatch, and other legislation that will move the National Pain Strategy forward. 

[US Legislator]
Please support H.R. 471 (S. 483) legislation  introduced by Rep. Tom Marino, and other legislation that will move the National Pain Strategy forward.

Please read:

Letter to President Obama from the Pain Action Alliance to Implement a National Strategy

Thank You

~ - ~ - ~ - ~ - ~ - ~ - ~ 


Also see:

Others in support of the NPS: 

            CPTAF also sent a letter to the Senate HELP Committee 
  • Dr. Sean Mackey, Stanford University Pain Research, and Dr. Lynn Webster, Past President of the American Academy of Pain Medicine, author and producer (see interview, here). 
  • Other organizations, and individuals, many outlined at the end of the PAINS letter, those who are on the steering committee at PAINS, and those aligned with the CPTAF (also listed at the end of their letter to the US Senate HELP committee noted above).



~ • ~ • ~ • ~ • ~ • ~

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

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


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

Saturday, April 16, 2016

A Spring Metaphor - Sculpting Our Thoughts on Pain


Though we have an idea of what to expect, spring unfolds differently. This year, we saw new records, and new challenges. In some places, spring came early and gave us a countryside bursting with color and new life, while other places are experiencing a late winter. This change and unpredictability is a metaphor for those of us who live with pain and chronic illness.

Our thought seedlings give life to our spirit and allow us to see challenges as motivators. But, some storms rock the earth beneath our feet. As a migraineur, spring storms throw me to the floor and knock the wind out of me. However, when I stand up again with my partner, challenge -- I will lead; I will rumba in a new direction and thank the spring storm for its nourishment to the earth and for providing me promise of new life. 

I find great strength, comfort, and diversion through poetry and photography, and I am thankful that I have found ways to fill up my thought spaces by writing for others who share this journey with me. The following photo and poem are excerpts from Spring Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series.

               Day 4 – Learning to Rumba to Rumbles


To Rumba with the Universe

by Celeste Cooper

Twinkles of light rumba across the morning dew,
While butterflies dance in the wind.

Tumbleweeds glide across the earth's open fields,
Blown away in time to explore a new path.

Fear cleansed by rain exchanged for the joy of freshness,
The sky opens, the sun bumps against clouds.

Renewal of spirit, the earth in cadence with my wits,
All in rhythm, as if, I rumba with the universe.


Thought Seedlings

Do you rumba? Do you like the name I gave the photo? What would you name it?  

Take a stab at changing up my poem to make it yours. My poems are not perfect, I share them so my readers know they can also express feelings and touch a sense of self. 

"Imperfection is relatable." 
Lauren Conrad

Tell me what you think in your comments, because I love to hear how it speaks from your heart to mine. In healing, Celeste

~ • ~ • ~ • ~ • ~ • ~

Learn more about what’s between the covers of Spring Devotions book edition here. http://www.celestecooper.com/spring-devotions.

Thank you to our readers for your kind thoughts and uplifting reviews of Spring Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series. Too all our new readers, welcome.


~ • ~ • ~ • ~ • ~ • ~

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

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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





Monday, April 4, 2016

ACR Responds to Inquiry on Fibromyalgia Criteria





As many of you know, I wrote a letter to the American College of Rheumatology (ACR). You can find my letter at Criteria for Fibromyalgia on My Radar AGAIN!

Following is the reply from the senior director of quality at the ACR and my response to her is after that.


Reply from ACR Senior Director:

Ms. Cooper,

Thanks for your inquiry.  My apologies for the delay in getting back to you this week; I am away and trying to catch up on email responses.

As you and Jocelyn have correctly noted, the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010.  This endorsement was published and cannot be “undone,”  so readers can and will continue to see that endorsement online and in print.  However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease, for reasons Jocelyn explained.  So readers won’t see a new or updated endorsement from the ACR online or in print.

For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time.  This means readers can always find more recent information than something published 6 years ago – and that is the case here.  An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.

I hope this helps clarify things.

Best regards,


My response:

Thank you so much for answering in such a timely manner. I am eager to share with my colleagues and fellow patients. 

I am sure those at the ACR understand my concerns that many rheumatologists (and general practitioners) are unaware of the ACR position on the fibromyalgia diagnostic criteria. Many articles come across my desk that suggest clinicians embrace the Preliminary Proposed Criteria, even though the ACR has not endorsed it.

In light of newer research, as you say, the criteria are a dinosaur. Yet, because of the strong emphasis on somatic complaints without probable cause, fibromyalgia is now becoming a catchall diagnosis again. I have had more than one patient tell me their physician now says fibromyalgia is a psychosomatic illness. I am certain you would agree that this is a travesty for the some five million Americans with this painful and disorienting syndrome. My some 5,000+ contacts report they do have another pain disorder, such as CRPS, EDS, Migraine, spinal disease, chronic pelvic pain, or other rheumatic conditions. I am sure the ACR is aware of the autonomic effects that have been studied by many different groups of researchers with consistent results, in particular heart rate variability. I appreciate that the ACR does recognize that FM often co-occurs with other rheumatic disorders, thumbs up! I would take it a step further and say it co-occurs with other pain conditions, as stated in the Alternative Criteria led by Dr. Robert Bennett.

I truly appreciate that the American College of Rheumatology has decided not to take a position on diagnostic criteria at this time. I appreciate that we need a biomarker such as the FM/a test, or loss of heart rate variability. But in the meantime, I have concerns that patients will not receive the appropriate treatments because their complaints will be dismissed as just, more fibromyalgia. And when other conditions have been ruled out, clinicians should understand that there are objective tests to investigate the common complaints of fibromyalgia. Those include surface EMG for muscle spasticity and muscle tension or thermal changes in the periphery. Ultrasound to locate and treat myofascial trigger points which cause peripheral pain in many chronic pain disorders , a sleep study to evaluate sleep competency, a neurocognitive exam to evaluate cognitive disturbances, and a nocturnal EKG, which can be done with a sleep study to evaluate heart rate variability. These are all things that may be contributing factors to fibromyalgia and can be addressed and treated appropriately.

Once again, thank you for your time and consideration.

Respectfully, Celeste

~ • ~ • ~ • ~ • ~ • ~

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

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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

Sunday, April 3, 2016

Criteria for Fibromyalgia on My Radar AGAIN!



Today, I am posting my letter to “Senior Specialist, Public Relations, American College of Rheumatology”. She and I have corresponded in the past on this issue, and I was assured that the ACR was not endorsing any diagnostic criteria now or in the future. Read on and you will see why I felt a need to contact her once again.




Good morning Joyce.

I am writing you because in December of 2014, you sent me a letter stating that the American College of Rheumatology (ACR) was not going to endorse any fibromyalgia diagnostic criteria. Today while researching for a freelance article, I stumbled upon the website for ACR-endorsed Criteria for Rheumatic Diseases (1) demonstrating that the ACR has endorsed the Preliminary Criteria, 2010, Wolfe F, et al. (2)

I am concerned, especially when there are other criteria better befitting the patient, i.e. the Alternative Criteria by Dr. Robert Bennett, et al. (3)  Medscape (4) and Network Rheumatology(5), and many others agree. However, there are clinicians that have been led to believe Dr. Wolfe, et al. criteria are approved, including the CDC (6). Dr. Wolfe also has a checklist on his website, ACR FM 2010 diagnostic criteria questionnaire modified for direct patient administration (7), which is misleading. And, in a Google search I find many articles stating, “How to Use the New ACR Diagnostic Criteria”.

If the criteria are not endorsed, then why was it published in a peer-reviewed journal with such a title, Preliminary Proposed, and why is it on the ACR website, Endorsed Criteria for Rheumatic Diseases? This is extremely important, because clinicians who use these criteria believe it is approved by the ACR, and people are being misdiagnosed. We are back to square one! It’s all in your head, because of these criteria. The ACR needs to take a stance on this. There is sufficient evidence to suggest there is an autonomic effect, loss of heart-rate variability, and an upset in the sympathetic nervous system response in fibromyalgia. There is much more, but suffice it to say, the ACR can search Pub Med.

I appreciate your response to my concerns and appreciate our previous correspondence. As a freelance writer for online health organizations, an author, and advocate, it is important I share accurate information. I am sure you understand.

Thank you in advance for your kind consideration. Celeste Cooper, http://CelesteCooper.com

Resources:

(3) Bennett R, et al. Arthritis Care & Research (2014) DOI: 10.1002/acr.22301.
(6) CDC – Fibromyalgia
(7) Frederick Wolfe - ACR FM2010 diagnostic criteria questionnaire modified for direct patient administration.


Following is the letter I received from you in December, 2014:

…the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.


Other Reading:



Celeste's Website

Celeste's Website
Click on the picture