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

~ • ~ • ~ • ~ • ~ • ~

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. 

Musings of Pain from Celeste – Part Two

What a privilege to have wonderful people like you to support my writing. Without knowing it, you lift me up. For that, I am grateful. It isn’t always easy; I get it. When I write for others, I learn too. Supporting one another is necessary to keep all of us motivated to do the things necessary for living a balanced life, despite persistent, chronic pain and illness. I hope you find something you need in my musings.

In healing,,Celeste

https://www.amazon.com/dp/0615798268

A Sampling of Musings

Is Chronic Pain a Disease? My Interview with Pain Specialist, Dr. Karl Hurst-Wicker, MD

The Painful Truth Documentary Is Here!

Partners, Friendships, Chronic Pain and Illness

Dry Eye and Chronic Pain

Taking up the Slack: Flares, Frets and Fibro
Criteria and Chaos: Diagnosing Fibromyalgia

Joint Hypermobility and Chronic Pain

Commanding Language, Conquering Dialogue: Perceptions and Pain

Marijuana and Chronic Pain-QA-Dr David Barton

A Spring Lesson on Mindfulness: Dealing with Pain and Illness

A Nervous System at Odds: Dysautonomia and Fibromyalgia  

A Profile of Chronic Pain: Q&A with Lacy Fowler, Arachnoiditis Delegate

“To know yourself as the Being underneath the thinker, 

the stillness underneath the mental noise, 

the love and joy underneath the pain, 

is freedom, salvation, enlightenment.”

~Eckhart Tolle

Additional Reading:

A Sampling of Musings from Celeste - Part One

And more …

From my blog

Written from the heart

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

~ • ~ • ~ • ~ • ~ • ~

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.

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.  www.thesethree.com