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. 

Costs Associated with Fibromyalgia: What’s Up with That? by Celeste Cooper

"When I was young I thought that money was the most important thing in life; 

now that I am old I know that it is."

~Oscar Wilde

How one answers the question, "What are the Costs Associated to FM?" depends on who you ask. Treating fibromyalgia is a costly business because often times it takes years for the right diagnosis. Patients will return for medical care until they get the answers they need. Why does it take so long to be diagnosed? Many care providers are unaware of other conditions that co-occur more frequently with fibromyalgia, and therefore, those conditions go unnoticed and untreated and the patient experiences unnecessary pain and fatigue from a wound up brain trying to process many messages at once.

Side Note: We need consistent diagnostic criteria such as that I reported on in my blog, The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here. Also shared on ProHealth here.

Ask the patient about the cost of having fibromyalgia. Most of the therapies found to be helpful, warm water therapy, acupuncture, acupressure, myofascial release, massage therapy, therapeutic trigger point massage therapy (for comorbid myofascial pain syndrome), T'ai Chi, Yoga, and other complimentary and alternative therapies are not covered by insurance, and if they are, they are capped. This means that most of the treatments suggested will never happen unless the patient has an endless supply of money.

Take a look at the latest Pain Action Alliance to Implementa National Strategy  policy brief NEVER ONLY OPIOIDS: The Imperative for Early Integration of Non-pharmacological Approaches and Practitioners in the Treatment of Patients with Pain accessible from my website here. 

We know that fibromyalgia patients need ongoing care, particularly since we have other painful comorbid conditions. The alternative diagnostic criteria by Bennett, et al, are comprehensive and can easily guide the diagnostician to the right conclusion (see side note above). If we can get integrative therapies moved to mainstream medicine, the overall cost to everyone will go down and the patient will have a better outcome.

You can also find my answer here  to What are the monetary costs associated with fibromyalgia? Don’t miss the hundreds of other questions answered by Celeste and others on Sharecare.com here.

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author, patient/ advocate, fibromyalgia health expert

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.  

Fibromyalgia - The Past, Present, and Future. Part I - The Past by Celeste Cooper

History

Fibromyalgia is not a new syndrome or disorder. It has been officially recognized by the health care industry for the past two decades, and has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyocitis...

.. Later in the nineteen hundreds the term fibrositis appeared in North American rheumatology textbooks. In the 1940s fibromyalgia was thought to be associated with depression and stress, and later, in 1975, Harvey Moldofsky and Hugh Smythe, both Canadian medical doctors, noted sleep abnormalities and fatigue in patients with diffuse musculoskeletal tender points. They also believed that fatigue could occur due to a disruption in an individual’s normal circadian rhythm, regardless of normal sleep duration. Even today, there are those who believe FM may be secondary to psychological stress or disordered sleep. Today evidence includes the physiological upset, regardless of what the aggravating factor might be. Still, by the very name itself—fibrositis—it seems the medical community back in 1904 believed the disorder to be inflammatory in nature. Conventional medical practitioners would have considered it foolhardy for someone to follow Dr. Gower’s theories and delay proper treatment.

Finally, in 1981 a connection was made between fibromyocitis and the non-inflammatory systemic symptoms. This led to adoption of the term “fibromyalgia” to identify the syndrome variously described as fibromyocitis, muscular rheumatism, tension myalgia, psychogenic rheumatism, tension rheumatism, neurasthenia, and fibrositis...

Excerpt - Cooper and Miller, 2010                 

Diagnostics

In 1990, the American College of Rheumatology (ACR) adopted the tender point count for diagnosing fibromyalgia. The tender point model was developed for a research study and was not expected to become diagnostic criteria, but it did. Today, this criterion is still the widest known, most likely, because rheumatologists are having a difficult time agreeing with it, and rightly so. (To be discussed in Part II). 

The symptoms of fibromyalgia must affect all four quadrants of the body equally, both sides above the waist and both sides below the waist. In other words, if there is a tender point in the left elbow, there will be another tender point in the same spot on the right elbow.  The painful tender points (not to be confused with trigger points) must be consistent and persist for at least three months. Tender points must be examined by applying enough pressure to make the examiner’s fingernail blanch (turn pale). 

While efficient in diagnosing fibromyalgia, the tender point model met with criticism because not all people believed to have fibromyalgia have 11 tender spots, and others have tender spots located in different areas. It is my opinion that some of these areas are/were due to a frequently overlooked comorbid condition called myofascial pain syndrome. You can search the archived research citations on my website here to see why I might form this opinion.

Other common symptoms historically associated with fibromyalgia are:

• Pain (often severe and disabling)
• Widespread body aches and soreness
• Morning stiffness
• Tender points
• Non-restorative sleep (even with eight hours of sleep)
• Malaise—lack of zest or energy, fatigue

                  

Three of these are considered primary symptoms of fibromyalgia today.

1. Non-restorative sleep (even with eight hours of sleep)
2. Body-wide pain
3. Malaise—lack of zest or energy, fatigue

(Today, cognitive deficit is also considered a primary symptom)

It is believed today that Florence Nightingale (the first nurse) suffered from fibromyalgia and that is why fibromyalgia day is May12th, the day believed to be her birthday.

Historically research has focused on many hypotheses. Despite this,  the World Health Organization included a code for fibromyalgia in the International Statistical Classification of Diseases and Related Health Problems (ICD 10-CM). In 2012, the Social Security Administration made a fuling on how to assess fibromyalgia as a "Medically Determinable Impairment." You can see the ruling here. 

More to come on diagnostic criteria, blood tests biomarkers, and the discovery of genetic markers that will change the way fibromyalgia is perceived, diagnosed, and treated. 

Watch for it!

Resources

Cooper C and Miller J. (2010). Integrative Therapies forFibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-BodyConnection. Vermont: Healing Arts Press.

Making Our Way to May 12th: New reports - FIBROMYALGIA, a neuro-immune disorder, a biomarker, and the NFMCPA goes to bat by Celeste Cooper

http://TheseThree.com

Jan Chambers and Rae Marie Gleason (Medical Education & Research Director for the NFMCPA) met with the National Institute of Health (NIAMS) in Bethesda, Maryland on March 27, 2014. Ms. Gleason discussed the fact that "there is now the FM/a blood test developed by Dr. Bruce Gillis (EpicGenetics) . Ms. Gleason also informed the NIAMS group that a second FM/a scientific blood biomarker study was presented at the American College of Rheumatology (ACR) meeting this past October (2103), which has been submitted for publication. Ms. Gleason drew attention to the fact that "the FM/a blood test is also being used in an NIH funded study to differentiate fibromyalgia patients from control patients." (Here).

Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association (NFMCPA), has shared her concern of having up to four fibromyalgia diagnostic criteria. She believes, and rightly so, that having the FM/a blood test will provide a differential diagnosis. In light of the different criteria that may be misunderstood by those diagnosing fibromyalgia having a biomarker is important. My concern has always been that when rheumatologists don't agree, how is the general practitioner going to decide which one to use. A huge thank you to Jan Chambers and Rae Gleason for also discussing this at the FDA Fibromyalgia Public Patient-Focused Meeting held on March 26, 2014. You can read more about the meeting here.

The"polysymptomatolgy" (many unexplained symptoms or "fibromyalgianess") in the Wolfe, et al. criteria (2010) has posed a problem for me. Understanding the comorbidities to FM helps the diagnostician, your physician, determine if your symptoms warrant further investigation beyond the primary symptoms of disordered sleep, fatigue, cognitive disturbance, and body-wide pain. Having a reliable biomarker will make certain that research is specifically targeting people with fibromyalgia in light of diagnostic criteria conundrum.

Dr. Robert Bennett has been a leading expert, clinician, and researcher regarding fibromyalgia for many decades, and he and others (2104) believed a study to validate the Wolfe, et al. 2011 criteria was in order. The ACR is paying attention and you can view the updated information here. 

Other studies, those on large and small polyfiber neuropathy from fibromyalgia skin biopsies, also suggest there is an immune factor involved. (Caro and Winter, 2014). I wondered about an immune connection at the time of the Albrecht, et al. study (2013). It is possible that our future could hold immune-globulin in our future, but more studies are necessary. One thing we can feel more comfortable about is that if study participants are screened with the FM/a test (93% accuracy) there will be no room for a guessing game.  

I believe there is a central reason for why certain diseases cluster with fibromyalgia. In light of the evidence presented here, and the effects they could have on the sympathetic nervous system, fibromyalgia could be reclassified as a neuro-immune disorder. 

My personal thoughts until otherwise contradicted is that fibromyalgia is not equal to centralization of pain. If this were true, every low back patient would also have some of the comorbid disorders of FM, which has not been evidenced. More research is needed, but the NIH is FINALLY headed in the right direction.

Showing my support

I have worked with Jan Chambers and the NFMCPA, including our shared participation in the PAINSproject. Jan is not a person to boast about what she and her organization do. So let me give you a sample.

Jan travels from coast to coast. In this past year, she attended the MYOPAIN conference, the Pain Action Alliance to Implement a National Strategy (PAINS) meeting in Washington DC, [You can read the report on my website here, the ACR meeting, the FDA meeting on Drugs and Treatments for fibromyalgia (twice, the first was canceled after she got there due to weather), and she met with the NIH. Not an easy feat for a fibromyalgia patient that headquarters in Utah. Jan sponsors awareness programs across the nation, she implemented the Leadership program for advocates, she has spoken to Utah legislators and has been instrumental in legislation to benefit Medicaid patients with fibromyalgia. She, through the NFMCPA, publishes Fibromyalgia & Chronic Pain LIFE magazine, a newsletter you can get directly delivered to your email, and she gives countless speeches to raise awareness. She not only speaks directly to patients through various forums, she also networks directly with physicians, fellow advocates, and other change agents. This is my shortlist. I am grateful to call her our friend and I encourage you to donate $12 to the NFMCPA, here, so she can continue the important work she does.

“Knowing is not enough, we must apply. Willing is not enough, we must do.”

-- Johann Wolfgang von Goethe

You can self-advocate by sharing the information presented here with your team of healthcare providers and your peers. You may have an underlying condition diagnosed that is treatable. In our current healthcare delivery model, it is imperative that we use our voice, not only for ourselves, but also for future generations. I have found over-and-over again, we don't know how far our voice reaches, but one thing is certain, if we don't speak—no one will listen.

Resources:

Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Med. 2013 May 20. doi: 10.1111/pme.12139. [Epub ahead of print]

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.

http://www.biomedcentral.com/1472-6890/12/25

Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]

Read more here. 

Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]

Fernandez-de-Las-Penas C, Penacoba-Puente C, Cigaran-Mendez M et al. Has catechol-O-methyltransferase genotype (Val158Met) an influence on endocrine, sympathetic nervous and humoral immune systems in women with fibromyalgia syndrome? Clin J Pain. 2014.30(3):199-204.

New Diagnostic Criteria Pinpoints Fibromyalgia CME by Diedtra Henderson, here.

Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clin Rheumatol. 2014 Apr;20(3):146-50.

Wolfe F, Brähler E, Hinz A, Häuser W..Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. Arthritis Care Res (Hoboken) 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB: Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

~ • ~ • ~ • ~ • ~ • ~

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.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com