Part II – Proprioception in FM and MPS: Are you a bull in the china cabinet? What can we do? by Celeste Cooper

In “Part I, Proprioception: Are you a bull in the chinacabinet? Is it fibro or myofascial pain syndrome?”  we talked about proprioception, what it is and how it relates to fibromyalgia (FM) and myofascial pain syndrome (MPS). 

PART II

It’s morning and if you are like me, you can see that your feet are attached to your body as you place them on the floor. Unfortunately, for some of us, as we start to walk, our appendages seem completely unaware of where they are. Our feet should go in the direction we believe we are headed, and our arms should not hit door jams that we have lived with for 10+ years. Slam, bang, crunch, there’s that darn wall again.

What can we do to improve balance and minimize 

the bull in the china cabinet effect?

Treating the myofascia

For the myofascial pain syndrome group (considered by many as the most apparent comorbid disorder to FM, usually a pain specialist, physical therapist, or body-worker) treating trigger points  in sternocleidomastoid and its branches is imperative.

The first treatment suggestion is to identify and correct perpetuating factors and adapt trigger point therapies that calm the hypersensitive areas in the myofascia.

Perpetuating factors include poor spinal alignment, repetitive motion, static positioning, carrying a purse or backpack that is too heavy, head forward posture, extended computer time, ill fitted chair, out of control comorbid conditions, etc.

Releasing trigger points by manual techniques can reduce or alleviate pain. However, it is important to remember that if you also have FM or CFID, the release of cellular byproduct from muscle manipulation can instigate a flare of FM or CFID symptoms. Stay hydrated, even after self-treatment. 

“Trigger points do not respond to positive thinking, biofeedback, meditation, or progressive relaxation. They respond only to physical intervention. However, positive thinking, biofeedback, meditation, and progressive relaxation can help prevent the stress that is thought to aggravate chronic myofascial pain.” (Cooper and Miller, 2010)

Therapies to improve balance

Therapies that are thought to improve balance and proprioception are T’ai Chi, gentle chair Yoga, gentle stretches, whole body vibration, and myofascial release. Also helpful is to balance on a therapeutic ball to improve your kinesthetic awareness (in this case, knowing where your legs and feet, and arms and hands are located). Neuroscience validates that we can train our brain. People with traumatic brain injury are learning to live life again. 

“The only way we could remember would be by constant re-reading, 

for knowledge unused tends to drop out of mind. 

Knowledge used does not need to be remembered; 

practice forms habits and habits make memory unnecessary. 

The rule is nothing; the application is everything.” 

― Henry Hazlitt, Thinking as a Science

Also see:

Five Safety Tips for the Holidays for Persons Living with Fibromyalgia and Myofascial Pain Syndrome by Celeste Cooper

http://fmcfstriggerpoints.blogspot.com/2014/11/five-safety-tips-for-holidays-for.html#.VHjBzjHF86w

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Update 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.  

Resources:

Carson JW1, Carson KM, Jones KD, Bennett RM, Wright CL, Mist SD. A pilot randomized controlled trial of the Yoga of Awareness program in the management of fibromyalgia.

Pain. 2010 Nov;151(2):530-9. doi: 10.1016/j.pain.2010.08.020.

Castro-Sánchez AM1, Matarán-Peñarrocha GA, Arroyo-Morales M, Saavedra-Hernández M, Fernández-Sola C, Moreno-Lorenzo C. Effects of myofascial release techniques on pain, physical function, and postural stability in patients with fibromyalgia: a randomized controlled trial. Clin Rehabil. 2011 Sep;25(9):800-13. doi: 10.1177/0269215511399476. Epub 2011 Jun 14.

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

Prado ET1, Raso V2, Scharlach RC1, Kasse CA1.Hatha yoga on body balance.Int J Yoga. 2014 Jul;7(2):133-7. doi: 10.4103/0973-6131.133893.

Sañudo B1, Carrasco L, de Hoyo M, Oliva-Pascual-Vaca Á, Rodríguez-Blanco C. Changes in body balance and functional performance following whole-body vibration training in patients withfibromyalgia syndrome: a randomized controlled trial. J Rehabil Med. 2013 Jul;45(7):678-84. doi: 10.2340/16501977-1174.

Jones KD1, Sherman CA, Mist SD, Carson JW, Bennett RM, Li F. A randomized controlled trial of 8-form Tai chi improves symptoms and functional mobility in fibromyalgia patients.Clin Rheumatol. 2012 Aug;31(8):1205-14. doi: 10.1007/s10067-012-1996-2. Epub 2012 May 13.

The ACR Responds to My Inquiry on the Fibromyalgia Diagnostic Criteria - Should I Scream or Cry? by Celeste Cooper

Finally, we have a response from the American College of Rheumatology (ACR) regarding my letter which was spirited by my blog FIBROMYALGIANESS—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria. 

While this was not the response I was hoping for (because I favor the Bennett 2013 Alternative Criteria, which you can view here), it is an answer and I am thankful to Jocelyn Givens.

Could it be the ACR is distancing itself from fibromyalgia, fibromyalgianess, and the controversy? With some research suggesting that fibromyalgia is immune mediated and other research suggesting it is a problem within the brain, could fibromyalgia be adopted by immunology or neurology? If  research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE), shouldn't it stay right where it is, under the umbrella of rheumatology? Are we back to square one? What kind of research can we expect in the future, and investigated by who? Who will set the criteria for making sure patients in studies do, in fact, have fibromyalgia? Don't clinicians currently look to the ACR for guidance, like they would look to the American College of Neurology for diagnostic criteria for MS? Surely I am not alone in my concerns.

Sometimes described as an “orphan” disorder, FM is much like an unclaimed waif. Finding its closest molecular relative will determine its scientific classification.

 Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain…

12/18/2014

Good Morning, Celeste.

Thank you for your interest in the ACR’s efforts related to criteria. I reached out to our Senior Director of Quality regarding your inquiry and received the following information that I hope you will find helpful.

At the time of publication, the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al.  What this means is that the ACR reviewers agreed that the drafted criteria were a reasonable first step to developing new criteria in this area, but the criteria were not yet validated in an external dataset so full endorsement could not yet be given.  The purpose of ACR provisional endorsement of criteria is to encourage investigators in the field to do the necessary validation work to confirm if the criteria are actually as promising as they look during the initial review.  Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval. 

In the case of the Wolfe criteria, however, even if good external validation work is done, they will not receive full ACR endorsement because the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria.  The main reason for this is because ACR endorsement of diagnostic criteria can negatively impact access to care and appropriate treatment for patients with that condition, which is clearly not our goal. 

The ACR believes there is value in diagnostic criteria, because they are helpful as guidance to clinicians and patients as they make decisions about care, but we maintain that the final decision about any patient care should remain between the physician and patient, i.e, we recognize that there will be exceptions to any standard criteria that are developed.  Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.

Again, thank you for your interest, and I hope we have been able to address your concerns.

Jocelyn Givens

Senior Specialist, Public Relations

American College of Rheumatology

~ • ~ • ~ • ~ • ~ • ~

Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.

Over a Month – Who’s Counting? I Am! by Celeste Cooper

pr@Rheumatology.org

acr@rheumatology.org
arhp@rheumatology.org
foundation@rheumatology.org

hannan@hsl.harvard.edu

December 17, 2014

To whom it may concern.

I understand the ACR has many issues to tackle, but the right diagnostic criteria for fibromyalgia is a very important issue. The media is reporting on concerns with the 2011 criteria. Follow up studies show the 2011 criteria is inefficient in defining fibromyalgia. My hopes are that the ACR is taking their time to get it right, but there is no way for me to know, because I have not received a reply or acknowledgement that you have received the following letter sent on November 3, 2014.

Thank you for what I hope will be a timely response.

Celeste Cooper, RN, educator, author, advocate, health expert on fibromyalgia at Sharecare.com

FIBROMYALGIANESS—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria.

You can access the November 3, 2014 letter here. 

2 Day Free Book Download - WINTER DEVOTIONS, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain (Series)

Just in time for the winter season, we are giving our readers a free download of the Kindle version on Saturday, December 13, 2014 beginning 12:00 AM PST ending Sunday December 14, 2014 at midnight. No thanks necessary, but it would make us ecstatic if you would leave a review on Amazon. 

Happy Holidays

Download at:

http://amazon.com/dp/B00HAVXLYO/

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain (Series)

WINTER DEVOTIONS

by Celeste Cooper, RN, BSN and Jeff Miller, PhD

There is nothing charismatic about chronic pain. Pain is greedy and demanding. It consumes our time, our relationships, and our function; it threatens everything that is important in our lives, and threatens to rob us of our character and our dignity.

The winter season is often compared to dying. This death allows us to come full circle and prepare for new ways of thinking, ways that allow us to reclaim control and defend ourselves against the grotesque monster that creates fear, agony, loneliness, and resentment.

Sharing their medical expertise, and Celeste as patient and advocate, the authors start with a blank canvas as white as the pure driven snow, full of possibilities. Offering a blend of integrative therapies and day by day tidbits of wisdom, the authors encourage their readers finalize to create a picture worth a thousand words, and encourage them to explore their unique, and sometimes, universal experiences. 

Join in as we walk the barren winter landscape that is necessary to rid ourselves of previous conceptions as we prepare for the spring season of rebirth.

 

Published by ImPress Media (2013)

ISBN:  13: 978-0615924052   ASIN (Kindle Ebook): B00HAVXLYO

Available at all major online retailers in 6” x 9” paperback.

“This lovely book of devotions is rich with insight and practical suggestions for any one with chronic pain. It is filled witch inspirational and healing words dealing with topics from nutrition, exercise and sleep to relating successfully to your doctor.”

~Susan E. Opper, MD, Medical Director of Saint Luke’s Pain Management Services, Saint Luke’s Hospital of Kansas City.

“I love the very idea of “Winter Devotions”.   The struggle of living with chronic pain is compounded for many by the winter months when it is cold, damp, and often gloomy.  Bones ache, joints hurts, and the spirit sometimes become depressed. This wonderful book provides a tool to help with those issues.  The quotes, photography and motivation of authors Celeste Cooper and Jeff Miller all bring much needed hope and relief.”

~Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and Principal Investigator of the Pain Action Alliance to Implement a National Strategy.

and more...

(See Reverse)

"...When pain is in 'boss mode,' it detracts from our innate need to socialize and contribute, and confronting chronic pain takes constant reminders..."

Following are a few thought provoking questions you interact with Winter Devotions:

• How can I find balance in my strengths and weakness?
• How can I clear my path today and take out unnecessary accumulated thoughts?
• How can I change my word energy?
• How does freeing memories make me feel?
• How can I make healthy substitutions this winter?
• What do those pain terms mean?
• How can I overcome procrastination?
• Is there something here I would like to explore?
• On the pain scale, what is my ten?
• What is something I always wanted to try, but never made the time? 
• What rules do I want for my journal?
• What can I do to maintain and build healthy relationships?
• Have I thought about my choices? 
• How can I redirect pain when it gets bossy?

Read more about other books by these authors at http://CelesteCooper.com  (About the Books Tab)