2018 Musings From The Pained Ink Slayer

Celeste on Amazon

I am blessed to have wonderful people who collaborate. So many give of themselves in an effort to offer support to those suffering with chronic pain, FM, ME/CFS, myofascial pain, CRPS/RSD, Lupus, Migraine, Lyme's Disease, Ankylosing Spondylitis, interstitial cystitis, arthritis and other painful conditions. It is because of the fortitude of others, I am inspired to keep on keeping on. Following is a compilation of what I have written in 2018.

PROHEALTH

Complex Regional Pain Syndrome: Similarities and Contrasts with Fibromyalgia

THE PAINED INK SLAYER

Could Biofeedback Be On Your Chronic Pain Gift List?

THE PAINED INK SLAYER  

The GERD-Fibro Connection

PROHEALTH

Five Things You Should Know About Dysautonomia If You Have Fibromyalgia 

THE PAINED INK SLAYER  

A Fall Lesson on Mindfulness

10 Fast Facts Fibromyalgia is Real (Blog Reprint of original 2016 ProHealth article)

PROHEALTH

Brain Under Siege: Centralization, Chronic Pain, and Fibromyalgia

THE PAINED INK SLAYER  

Chronic Pain: Does Sex Matter?

FMa Test - BCG Fibromyalgia Vaccine Trials Receive FDA Approval

PAINS Project Moves to Academy of Integrative Pain Management (AIPM)

PROHEALTH

Standing On The Shoulder Of Giants: Managing Chronic Pain And Invisible Illness With Words From the Wise

THE PAINED INK SLAYER  

A Day in the Rockies Poem about Rockies for mom

THE PAINED INK SLAYER  

4 Ways to Power Up Your Positivism

PROHEALTH

The Physicality Of Fibrofog, The Brain, And Pain

Diagnosing And Living With Irritable Bowel Syndrome

THE PAINED INK SLAYER  

FDA responds on behalf of chronic pain patients who require opioids to treat their pain

The FM/a® Blood Test and Participation in Fibromyalgia Vaccine Study

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You can follow my ProHealth profile page where I write about fibromyalgia and its frequent partners, and Health Central has archived the articles I have written for them, here.

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PROHEALTH

Fibro Playmate of the Month – The Migraine Connection

THE PAINED INK SLAYER  

Opportunity Knocks Again: Public Comments on Patient-Focused Drug Development for Chronic Pain

Migraine and Me: If you could see me now #MHAM2018 challenge

Comment Now to NIH Pain Management Best Practices or Forever Hold Our Peace

12 Months and 14 Fibro Musings

PROHEALTH  

7 Tips for Reclaiming Control over Fibromyalgia

THE PAINED INK SLAYER  

Science, Fibromyalgia, and Exercise

PROHEALTH

3Tips for Reducing Stress in Fibromyalgia

THE PAINED INK SLAYER  

9 Reasons Tai Chi Reduces Pain and Promotes Health

Balancing Pain and Illness through Poetry

PROHEALTH

Myofascial Pelvic Pain in Men and Women with Fibromyalgia

THE PAINED INK SLAYER  

Mindfulness and Chronic Pain

Never Again Will I Travel Without My Oska® PEMF Device. #sponsor discount code CCRN60

PROHEALTH

Does Rare Disease—EDS—Plague Fibromyalgia?

THE PAINED INK SLAYER  

Fibromyalgia FM/a Blood Test and EpicGenetics Landmark Clinical Research Efforts

Making the Best of AFFIRMATIONS

THE PAINED INK SLAYER  

A PATIENT's VOICE – Life in Chronic Pain with Frank Elliot

PROHEALTH

Fibromyalgia and Thyroid Resistance

THE PAINED INK SLAYER  

The Thyroid and Fibromyalgia: Is there more than a butterfly connection?

Avoiding Lockdown

HEALTH CENTRAL

How Kinesiology Can Help Manage Chronic Pain

THE PAINED INK SLAYER  

New Year’s Wish for Fellow Pain Warriors (January, 2018) 

  

As I look back at 2018, I am filled with gratitude, love, and admiration for each of you, and look ahead to the New Year with hope and promise.

THANK YOU for your comments and for sharing any and all information, not only from me, but from the many other advocates, bloggers, and writers who share this space with all of us.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

12 Months and 14 Fibro Musings by The Pained Ink Slayer

As fibromyalgia awareness month winds down, I am reminded of all the wonderful work of advocates and fellow bloggers. However, this month is a difficult one for me personally, because I also have chronic migraine; and the unstable atmosphere of spring weather is a trigger I cannot control. Fibromyalgia and its partners can be more than a physical challenge. For instance, a special PAINS-KC meeting I looked forward to attending was side railed because of what would end up being a 14-day status migrainosus. And, I can’t remember doing an interview for May awareness that I did not have migraine. Unintentionally, this introduction is also a segue to June headache and migraine awareness month, stay tuned.

What I write is rooted in my personal quest for help. I have learned to forgive myself for the things I can’t control and to embrace adversity. I realize that good days for others are spectacular to me. I hope you find something that is helpful for you.

Note: For future reference, archived blogs are in the right column of this page, Celeste’s freelance articles are in the header tab Celeste’s Publications, and this particular blog will be linked in the header tab Fibro Musings.

  

Just published! 7 Tips for Reclaiming Control over Fibromyalgia

Ways we can manage the effects of fibromyalgia on our central, autonomic, metabolic, and immune systems…

9 Reasons Tai Chi Reduces Pain and Promotes Health

Explore the types and benefits and practices tai chi, dubbed “medication in motion” for those of us living with chronic pain…

Fibro-mates, GI Disturbance, and Hypnosis

There is a well-documented bidirectional pathway between the brain and gut. Read about fibro-mates, IBS and GERD, and evidence on supportive therapies of the mind…

​Pitfalls and Pleasures of Therapeutic Massage for Fibromyalgia and Myofascial Pain

Determining the most beneficial type of therapeutic massage or bodywork relies on our understanding of the differences between fibromyalgia and myofascial pain syndrome. What massage techniques can help?...

Science, Fibromyalgia, and Exercise

What type of movement is showing promise for managing our fibromyalgia? You might be surprised to see the recent evidence…

Does Rare Disease—EDS—Plague Fibromyalgia?

Fibromyalgia and EDS (hEDS = EDS hypermobile type) share connections you might not have considered…

3 Tips for Reducing Stress in Fibromyalgia

What you may not know about your symptoms, stressors, and management tools…

Myofascial Pelvic Pain in Men and Women with Fibromyalgia

About the male and female fibromyalgia pelvis, pain and the myofascia, diagnosis to treatment…

Update: Fibromyalgia FM/a Blood Test and EpicGenetics Landmark Clinical Research

Genetic studies on fibromyalgia are underway with the assistance of the University of California, UCLA, and University of Illinois at Chicago using the FM/a blood test to identify participants.

Fibromyalgia and Thyroid Dysfunction

Thyroid problems can co-exist with and/or sometimes mimic fibromyalgia, the science, medicine, and awareness...

Lymphatic Massage, Clogged Drains and Fibromyalgia Pain

To understand why manual lymphatic massage is beneficial for those of us with fibromyalgia, we must first understand how it works.

The Lessons of Myofascial Pain Syndrome and Fibromyalgia

Why does myofascial pain become chronic? What causes the chronic pain of fibromyalgia? Does myofascial pain sustain fibromyalgia pain? Difference between a trigger point and tender point, and more...

Casting Light on the Shadow of Fibromyalgia: Finding the cause

The FDA "Voice of the Patient", getting unstuck, the biology of body matter, immune cells, and noteworthy news...

It’s a Battlefield: Bruising and Fibromyalgia

Are your arms and legs like battlefield magnets? Do your extremities look like a world atlas? For those of us with fibro, there might be an explanation to why that is.

Criteria and Chaos: Diagnosing Fibromyalgia

Disparity, agreements, 2016 Revisions to the 2010/2011 Fibromyalgia Diagnostic Criteria appear to address previous concerns, and now conclude...

Don’t miss:

The Pain Advocate’s Corner: How to Raise Your Voice

(also permalinked in the header tab of The Pained Ink Slayer).

“To unleash victory, I must have an open mind and willing heart,

judge not, embrace change, and be a steadfast observer of self.”

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Fibro-mates, GI Disturbance, and Hypnosis

(C) The Forest of  an Open Mind

For years, we have known an extraordinary number of us with fibromyalgia also live with one or more frequently co-occurring, comorbid, conditions. One of those is irritable bowel syndrome (IBS). I have vocalized my own experiences with IBS, interviewed Dr Stephen Wangen, board certified, licensed physician in naturopathic medicine and co-founder and Medical Director of the IBS Treatment Center, and I have written about it in what our readers call “The Big Book”. 

Quintessential Fibro-mate: Irritable Bowel Syndrome (IBS)

If you have IBS, you know the drum-like tightness and resonance caused by belly bloat. When not in an attack, I can explain it like this; I am in a canoe that is lazily floating through my gut. There I am with my feet up, hands behind my head relaxing in a tranquil gently moving environment. Then suddenly, I am holding on for dear life. My canoe ricochets from side to side like a ball hitting the bumpers of a pinball machine, threatening to throw me into a toxic abyss. If you have FM and IBS, you know.

What you may not know is that during an attack I practice creative visualization. I envision my bowel being coated and cloaked with a calming gel that clings to the walls of my intestines. The gooey colorful substance protects the lining against caustic toxins. As I control my breath, I call on my reserves to translate what is happening differently, without judgment. I have not mastered the technique enough to prevent an attack, but it does ease my minds interpretation of the event. In the past, things like creative visualization were not seen as valuable tools by traditional medicine. But, could times be changing? 

Fibro-mate: Gastro-esophageal Reflux Disease (GERD)?

A stronger connection has been made between fibromyalgia and GERD, as reported in an article I wrote for ProHealth. What’s interesting about this connection is that all three; FM, IBS, and GERD share two things

1.     Relationship to the immune system

2.     Relationship to brain, centralization

What’s even more interesting is that traditional medicine, thanks to neuroscience, is now embracing the things my co-author, Jeff Miller, PhD, and I have written about in our books.

Hypnosis— Really?

According to Medscape, a continuing education website for physicians and registered nurses, hypnotherapy for IBS, GERD and inflammatory bowel disease  looks promising. Did I ever think conventional medicine would look outside the box? Yes, but when we wrote our book on integrative therapies for fibromyalgia, ME/CFS, and chronic myofascial pain I would not have predicted the robust acceptance or the change taking place in traditional medical paradigms.

Hypnotherapy, as I can personally attest, gives us a sense of control and like my reported experience with creative visualization; it exposes our internal dialogue to change. As a qualified hypnotherapist makes suggestions, we gain power over autonomic body dysfunction, such as IBS and GERD. Biological changes, i.e. temperature, pulse, and blood pressure occur in response to our thoughts as evidenced by biofeedback.  

There is a well-documented bidirectional pathway between the brain and gut, and I believe integrative therapies, such as creative visualization, hypnosis, and biofeedback have a positive effect because fibromyalgia, IBS and GERD share a brain-body connection, centralization and the autonomic nervous system.

Articles of interest:

·        Is There a GERD—Fibro Connection?

·        A Nervous System at Odds: Dysautonomia and Fibromyalgia

·        What is Centralized Pain: An Interview Dr. Karl Hurst-Wicker, MD

·        Incredible Ways to Visualize Pain in the Brain

·        Chest Wall Pain, Esophageal Spasm, and GERD

 In healing,,Celeste

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

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Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Is the prevalence of joint hypermobility purely a coincidence in CFS and FM? by Celeste Cooper

Shared by ProHealth is Dr. Peter Lowe’s assessment of joint hypermobility in chronic fatigue syndrome.

Is The Physical Examination Normal in CFS? Part 2: Joint Hypermobility, here.

As you will see, I too made this connection in our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (rated in the top 100 books on Diseases & Physical Ailments on Amazon in 2013) if you read more about joint hypermobility and Ehler’s Danlos Syndrome on my website here. 

How coincidental could this be?

Another study suggests this phenomenon goes undiagnosed in irritable bowel syndrome, a common comorbid disorder to fibromyalgia, which often overlaps with CFS.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q.. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. [Jan 15 Epub ahead of print.]

“Many upper and lower GI symptoms increased with increasing severity of JHS phenotype. Upper GI symptoms were dependent on autonomic and chronic pain factors. JHS is common in GI clinics, with increased burden of upper GI and extraintestinal symptoms and poorer quality of life. Recognition of JHS will facilitate multidisciplinary management of GI and extra-GI manifestations.”

French investigators noted some stark realities in fibromyalgia patients.

“Some patients suffering from fibromyalgia present with clinical signs and alterations in the histopathology, immunohistochemistry and ultrastructure of the dermis similar to the Ehlers-Danlos syndrome, hypermobile type (EDSH). Some types of fibromyalgia possibly represent an undiagnosed EDSH.”

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

I can only speak from what I found in my literature review for the 434 page book and my own personal experiences. A stark reality for me is that my own skin is that of someone on long term steroid therapy, but I don’t even tolerate steroids. My wounds heal so slowly that one of my doctors said I should always have a wound care specialist. My skin connective tissue tears like paper and bruises from a feather touch. I have had four shoulder surgeries, one complete reconstruction because it would not stay put, and the other three because of tendon and cuff tears. My hips still pop in and out at will, only contributing to fall risk and aggravation and development of more trigger points, piriformis and sacroiliac pain, and hip bursitis. I have suffered many severe joint sprains throughout my life. I can still put my hands flat on the floor and my therapists are amazed at my flexibility in light of my age and the severe myofascial pain syndrome. And yes, before arthritis, I was what many referred to as double-jointed.

Are our doctors giving this connection serious consideration? 

Could this explain why so many FM and CFS patients 

are susceptible to myofascial pain syndrome?

Keep up the good work Dr. Rowe and fellow astute investigators. A physician should never underestimate the value of a skilled physical exam. We salute you.

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

Celeste Cooper, RN

Author, patient/ advocate, fibromyalgia health expert

Books:

Read about Celeste and access to her books at Author Central here

Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 

Fibromyalgia expert on Sharecare, here. 

Participant in the Pain Acition Alliance to Implement a National Strategy, here.

Website: http://www.TheseThree.com

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

Moving into the Month of Specific Spoonie Awareness by Celeste Cooper

As April 2014 ends, here is a recap for this month's awareness into conditions and methods of coping and re-energizing our body, mind, and spirit.

From Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions

"No man is great enough or wise enough for any of us to surrender our destiny to. 

The only way in which anyone can lead us is to restore to us the belief in our own guidance."

~Henry Miller

Did you know that April is "Qi Gong Awareness"month? by Celeste Cooper

Looking Back at IBS by Celeste Cooper

April is Poetry Recognition Month by Celeste Cooper

As we prepare for one of the biggest awareness month, it's only fitting to share a short but important poem that will provide a bridge from April to May.

Pain Facts of an Advocate© by Celeste Cooper 

Fatigue challenges us,

Action defines us.

Collaboration empowers us,

Tenacity unveils us, 

Spirit enlightens us, 

Pain and illness unites “The Advocate”

Preparing for May...

Ribbon Colors for May Awareness:

• Autoimmune Rare Diseases - Black or orange
• Systemic lupus erythematosus (SLE) - orange
• Fibromyalgia (FM) - Purple
• Myalgic Encephalomyelitis/Chronic Fatigue (ME/CFS) - Blue
• Complex Regional Pain Syndrome (CRPS/RSD - Orange with yellow and red
• Ehler's Danlos Syndrome (EDS) - Blue with Black and white stripes on one side
• Chiari Malformation - Purple
• Arthritis - Navy blue
• Allergy 
• Asthma = Gray
• Food = Teal (I have seen varying colors)
• Allergy-sinusitis - I could not find one ribbon for this most important reaction to environmental triggers so I am going with true green to represent the color of common triggers.
• Lyme Disease - Lime Green
• Osteoporosis (OP) - Blue vs white
• Neuropathy - Purple

For everyone who knows what it's like to live with rare, autoimmune, or poorly understood conditions or disease , spoonies, my greatest hope is that you will take up arms by representing this vast community. Change your profile picture and feel free to use the spoon picture to spread the word for all who endure the many effects of chronic pain and illness. Make the choice to be visible. Support your organizations by sharing information, making a donation, encouraging others to make a donation, or offer up a few words of support. 


Whatever it is you have in your wheelhouse, USE IT!

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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 author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.