Part Two – Chronic Pain in the Present – The Question by Celeste Cooper

In part one, you read about the historical evolution of patient care and the value of “looking up.” In this segment, we will explore how our provider asking certain questions, in a certain way, can open the floodgates of information that might improve our care.

Every individual has a primal instinct to preserve life and avoid pain. Our ancestors either found a way to treat their pain, live with it, or not. Things are not so different today other than the availability of advanced diagnostic tools and interventions. Despite this, the Institute of Medicine report—“Relieving Pain in America”— states people living with chronic pain are judged, discriminated against, and underserved. Most staggering of all is that approximately 100 million Americans presently live with chronic pain.

No doubt, chronic pain, and other illnesses that can accompany it, has an impact on society. However, the impact is not limited to society. We, as patients, are also affected. Scrutiny by government agencies and non-reimbursement for integrative treatments are two things that make it difficult for our providers to develop care plans. Wouldn't it be wonderful to have a therapeutic massage, acupuncture, or other integrative therapies we know help reimbursed by insurance? At the The Center for Practical Bioethics symposium, Patients as Teachers, we learned a great deal about ethical dilemmas associated with untreated and undertreated pain. There are people who want to make a difference. The wheels of progress may turn slowly, but they turn.

“Continued emotional support is vital to the functioning of a family member 

in pain and to aiding in his or her rehabilitation.”

– INSTITUTE OF MEDICINE, RELIEVING PAIN IN AMERICA, 2011

At the Pain Action Alliance to Implement a National Strategy, where you can now participate by clicking on the “Join” square here and scrolling down to the bottom of the page, we hope to see a movement toward a moral imperative for patient centered pain care. It doesn't just begin with caring organizations, it also begins with the willingness of patients to become involved. We need to give a voice to our pain, raise media attention from our perspective. I don’t know one person living with chronic pain that doesn't want to see a change in the way their pain is perceived, judged, and treated.

Nearly every one of us experiences medication side effects, medical devise failure, or invasive procedures that come with their own risks. We live with the hope that the next thing will get us back on our feet or minimize our pain to a dull roar. We are optimistic when we walk through clinic or hospital doors, but we don’t always leave that way. We become complacent because our provider doesn't listen, or so it seems to us. We understand our providers become frustrated, because we do too.

This brings me to the type of questions every provider should ask. Each is simple and reflects the climate of healthcare in the 19th century that you read about in Part I, A Look Back and Look Up.

"How is your family?" “What do your friends do to support you?” Open-ended questions such as this should be answered with honestly. It is important that our provider understands not only how pain affects us physically. Many of us have no support at home, which makes us feel isolated and alone. We become angry because we have lost control over our lives, and sometimes, we lose even more, our dignity, and our relationships with others,. We need and deserve this balance in our lives. Speak up.

Ask your provider for resources on how to cope. If they don’t have them, talk with them about why it’s important to you. It will not only remind your provider you are a human being with the same needs they have, it may help them change their personal perspectives for making positive change in their practice. Research tells us these approaches influence how we cope emotionally, mentally, and spiritually, which improves they way we cope with physical pain. When we find balance, we regain control.

Management of chronic pain takes an integrative, patient centered approach emphasizing communication, patient and provider education, and ethical preservation of our patient right to choose. These goals are a moral imperative. So, next time you have an appointment with your provider ask yourself, “What one question would I like my provider to ask?” If they don’t ask, simply say, “I wish you would ask me about…” Then ask for resources, you deserve them.

What could the future hold for pain care? That’s coming next.

~ • ~ • ~ • ~ • ~ • ~

Updated Post Script

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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. 

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

Part One - A Look Back and Look Up: Could history be a guide for treating chronic pain? by Celeste Cooper

The original article will appear in the September issue of Kansas City Nursing News as a contributing columnist to honor pain awareness month. It is rewritten from a patient perspective.

This is the first article of a three part series to kick off “Chronic Pain Awareness.” We will explore the history of the patient-physician relationship, its effect on trust, and question how specialized medicine and advanced technology has made an impact on patient care.

As a registered nurse turned author, advocate, and patient, I have worn many hats. I have also seen many shifts in the delivery models of healthcare. However, the biggest pendulum swing affecting me is the treatment and judgment by others as a chronic pain patient. I went from a high functioning nurse collaborating on patient care to healthcare consumer. I have felt judged and I have been treated differently by some. I have thoughts on why this might be. 

In American history, the local doctor treated everything. Patients valued their doctor as the authority. It didn't matter if we knew our blood pressure, because patients trusted their doctor to know what to do, but more than that, this trust was mutual. Because of this, we felt comfortable sharing our experiences including how living with chronic pain affected all aspects of our lives, and our doctor listened. Our doctor knew how chronic pain was affecting our families, our ability to socialize, our emotional and spiritual stability, and the financial impact having chronic pain created for us. Our doctor felt obliged to help us lead the most productive life possible. Physicians weren't required to get the government’s permission to prescribe medication and other treatments, and if they saw we were abusing our medications, they spoke us, because they cared about this too. They didn't judge because they knew who we were before chronic pain. Today, it is unlikely the doctor treating our pain knows us at all.

With time and the human desire to explore, make things better; find a vaccination for polio, for instance, the delivery of medical care has morphed into a system of specialties and advanced technology. The days of bartering or trading services and patients feeling responsible for making sure their physician was also cared for has become outdated. So, how did we go from historic trust and physician-patient familiarity to distrust and judgment? It seems out of place to me and against the grain of what I learned in nursing school and from my life’s lessons. Living through this shift in attitude is probably the hardest thing for me to accept, because I have seen different days in my more than six decades of life.

Humans, as do animals, interact and recognize non-verbal cues by establishing eye contact. So I am disturbed that some healthcare providers no longer look at me while I talk. Instead, they are busy looking at, and documenting, on their laptop. Would the local doctor of the 19th century, the one who would take a dozen eggs for their service, ever consider it respectful to bury their head in a book while their patient was sharing their innermost fears? Would any of us be able to communicate and foster trust with someone who doesn't look us in the eye?

Studies show there is judgment affixed to having or caring for someone in pain. Can we, as patients, and our providers look back and learn? Can we all simply “look up?” (See “Communication with Your Healthcare Provider, here.) As a patient, I want to feel the warmth one can only experience through compassion, touch, and trust. I want to feel the security that is fostered when my physician comes eye to eye with me, smiles, or reaches out to touch me in a gesture of "I care." I want to feel secure. I want a mutual exchange of information, and I want my doctor or nurse to explain things in a way I understand.

We must embrace technology, but not at the expense of becoming less human. Would Florence Nightingale think we have advanced? Would she believe we have to sacrifice eye contact or compassionate behaviors in order to appreciate the advancement in technology, specialization of medicine, or communication and trust?

As patients, we have made some changes too, but I suspect our anger, our distrust, and our own attitudes have evolved as a result of poor communication and the aloofness technology has infused into our lives. How can we effect change in our relationships with our providers? Can we simply ask our healthcare provider to see us as a fellow human being, a member of the same team? We also have ownership in this process. We too should keep those few minutes with our physician sacrosanct and return our cell phones to our pockets, treat our appointment time as we would our time with an old friend. CAN WE simply—

 UP

See tips for effective communication to learn more about how we can foster our relationship with our healthcare provider.

In the next segment, (here) we will explore how your healthcare provider can gain a plethora of valuable information that will give them a better understanding on how chronic pain affects your life.

Side Note:
Advocates are coming together to address the needs of our society, in particular, the needs of approximately 100 million Americans who live in chronic pain. The PAINS Alliance, an initiative of the Center for Practical Bioethics believes that the only way to realize transformation in the way pain is perceived and treated in America is "to combine the collective power of organizations and those they serve — people living with pain — in a sustained effort to improve the delivery of pain in America." I am pleased to be a participant in this most important, energetic, and patient focused alliance of influential organizations and individuals, and now you can be too, here . 

This collective and integrative group has a mission to advocate for and act collectively to actualize the recommendations set forth in the Institute of Medicine (IOM)  report “Relieving Pain in America, A Blue Print for Transforming Prevention,Care, Education and Research. Those who participate believe it is our vision that all Americans living with pain will have access to integrated pain care consistent with their goals and values. You can now join as an individual . 

“Continued emotional support is vital to the functioning of a family member 

in pain and to aiding in his or her rehabilitation.”

– INSTITUTE OF MEDICINE, RELIEVING PAIN IN AMERICA, 2011

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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. 

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.

In a word – What we know about terms and fibromyalgia

Historical terms for what we know today as fibromyalgia:

fibromyocitis
muscular rheumatism
tension myalgia/ tension rheumatism
psychogenic rheumatism
neurasthenia
fibrositis
(Cooper and Miller, 2010)

Fibromyositis

Fibromyositis is still alive and we now know it is not interchangeable with FM. It is an inflammatory condition of muscle associated with overgrowth of the connective tissue.

Muscular rheumatism

Muscular rheumatism is today used to describe what we know as polymyalgia rheumatica.

Sneak Peek, Polymyalgia Rheumatica©…
Because muscle pain and stiffness are associated with PMR, it could be confused with FM, CFID, or CMP. However, it is a different condition all together. Polymyalgia rheumatica is inflammatory in nature. Because muscle pain and stiffness are associated with PMR, it could be
confused with FM, CFID, or CMP. However, it is a different condition all together….
(Cooper and Miller, 2010, pg 104)

Tension myalgia

Tension myalgia implies muscle pain from tense muscles, Mayo Clinic says, “Tension myalgia is a diagnosis that has been in use at the Mayo Clinic for more than 40 years. The term describes a common muscle pain disorder that is conceptually similar to other muscle pain disorders such as fibrositis, fibromyalgia, and myofascial pain syndrome. This article outlines the history of these disorders and proposes "tension myalgia" as a term that unifies these separate diagnoses under one conceptual framework. Because the diagnostic criteria for tension myalgia have been vague, the Department of Physical Medicine and Rehabilitation at the Mayo Clinic has developed specific criteria for generalized, regional, and localized forms of this disorder. The recommended treatment approach includes reassurance, elimination of contributing factors, physical therapy to restore normal neuromuscular function, conditioning, and medications.” (Thompson, 1990)

It is my opinion that tension myalgia may be related to what we know today as myofascial pain syndrome (MPS) referred to in our book as chronic myofascial pain (CMP). MPS/CMP is a prevalent peripheral pain generator to the centralization of pain found in FM.

Psychogenic rheumatism

Psychogenic rheumatism is an old term that implies muscle pain is a psychiatric disease. Unfortunately, despite the overwhelming evidence to the contrary, there are still those that would like to put us in this category.

Neurasthenia

Neurasthenia is an old term that denoted what they thought was a psychological disorder manifested by chronic fatigue and weakness, loss of memory, and widespread pain, thought to be from an exhausted nervous system. This definition of an old term certainly does relate to what some of us still experience from our healthcare providers today. I would like to think our practitioners know that the breakdown in the central nervous system in FM is a biological problem that is caused by the presence peripheral pain generators called myofasical trigger points. Though they knew nothing of MPS/CMP in those days (long before the work of Travell and Simons), somehow I feel they would have embraced modern studies better than they are received in our healthcare delivery system today.

Fibrositis

Fibrositis is still used as a synonym for fibromyalgia by some who haven’t kept up with the research. Even though “itis” is the suffix for inflammation and we now know that fibromyalgia is not an inflammatory disorder. It is a syndrome that affects the central nervous system, perpetuated by peripheral nerve to muscle deregulation.




(Signature line appended, March 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

Resources:

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

Thomson, TM, Tension myalgia as a diagnosis at the Mayo Clinic and its relationship to fibrositis, fibromyalgia, and myofascial pain syndrome. Mayo Clin Proc. 1990 Sep;65(9):1237-48.