Fibromyalgia and unnecessary tests: more care is not better care

“He’s (sic) the best physician that knows the worthlessness of most medicines”, Benjamin Franklin

This is not a blog about doctor bashing. I have been so fortunate for many decades to have a physician who does not suggest unnecessary tests, is sympathetic , highly intelligent and comforting. Rather it is about the run around that many people with chronic pain experience as they ‘doctor shop’. Physicians do not want their patients to suffer. However, often they are stymied by the host of symptoms presented to them which cannot be explained. For that reason many people are burdened with a deluge of medical tests without receiving any concrete explanation about their condition.

When patients present themselves with chronic pain and a myriad of other invisible symptoms to their health care providers, their desire is for relief, more importantly, a cure. It is reasonable at first to rule out life threatening conditions but with fibromyalgia the tests can go on and on for several years or longer. I was 25 following a long labor and C section when I had my first attack of fibromyalgia. I could barely walk. I was diagnosed with gout! I was a small person and did not have any of the usual characteristics of  the gout patient, but a misdiagnosis kept me from understanding the side effects of the many medications I began taking. For many years various tests kept me wondering anxiously what each one would reveal (actually nothing was revealed!). The pain continued and has to this day – and will continue to be a challenge for me.

I have recently seen a site where a physician who herself has fibromyalgia suggests that a particular product has become the treatment of choice for both she and her patients with whom she has had great successes. I have read many such claims over the years and I find it disheartening. THERE IS NO EVIDENCE BASED MEDICINE THAT HAS BEEN SHOWN TO CURE FIBROMYALGIA. While it may be true that after suffering from fibromyalgia for many years various systems of the body are affected. However, there are no long-term, huge experimental or quasi-experimental studies that can say with a fair degree of certainty that people with fibromyalgia are insufficient in magnesium, potassium, phosphorus, or any other kind of vitamin or mineral deficiency. It seems likely that after years of pain and the many other symptoms of this syndrome, that changes can eventually occur within the body which may have a deleterious effect on the hormonal and endocrine system, (perhaps, as in my case, even the circulatory and cardio-vascular system). But to date none of this can be proven. Fibromyalgia remains an elusive condition of  primarily pain, fatigue and a host of other symptoms that in the short-term are non life threatening. I can only repeat what I have been proselytizing for many years: PAIN IS IN THE BRAIN. The pattern of more and more tests to make this invisible dis-ease fit a disease paradigm is exhausting, expensive and unnecessary.

From my many years of research and living with fibromyalgia I can say with a fair degree of certainty that fibromaylgia is known to occur in a person who is highly sensitive, generally has a crisis of some sort, like surgery, death of a loved one,  or an accident that brings on  the first major flare-up. This person is overly empathetic, intuitive,  and has an easily aroused central nervous system which is always in a state of hyper-arousal. There is a specific personality type. This is a person whom the world needs, an empathetic caregiver who can easily sense what others need. It is also an anxious person.

Does this leave us without hope? Absolutely not. While it is challenging, brain research of the last two decades has shown the ability of the brain to change. But, more tests, more misdiagnosis, useless medications that affect us negatively, and constant physician visits are not the answer.  Interventions that are intended to promote self-management is the way that we should move forward as we become the experts of our own lives. But then I am repeating myself, since in all these blogs I keep saying the same thing. It is a struggle managing pain and fatigue, but any elixir that is said to cure fibromyalgia is not addressing the hyper-sensitive, hyper-aroused nervous system of those of us who are seeking a ‘cure’.

I have been researching historical figures who have been deemed hypochondriac because of the vague ailments and histories of symptoms which mimic fibromyalgia, one of whom is Florence Nightingale. Others are such figures as Robert Schumann, the classical composer who was said to be highly sensitive as a young man and suffered greatly at age 16 after his father and brother died. Glen Gould, the pianist was also said to be someone who was a malinger, a common derogatory word that is used for invisible pain conditions.  He suffered from pains and was a worrier. Charles Darwin was a very anxious person and had pains and fatigue. The list is long.  We are in the company of many brilliant, talented and intense, anxious people! When a diagnosis is uncertain, and tests do not tell the experts definitive answers, the burden is on the person who suffers. Living with invisible pain and fatigue is a challenge until we take control of our own lives.

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
This entry was posted in charles darwin, evidence based medicine, Fibromyalgia, glen gould, malinger, misdiagnosis, pain and the brain, robert schuman, specific personality type, too many medical tests. Bookmark the permalink.

4 Responses to Fibromyalgia and unnecessary tests: more care is not better care

  1. Jacquie Raffile says:

    Beautifully written full of truth.

  2. Thank you, dear Jacquie!

  3. Roger says:

    I just finished reading the article. Thank you for getting it out there. My wife suffers from this disease, along with a few other issues, and we fight the constant battle of people not understanding, not listening, and doctors wanting to keep medicating.
    Frustration happens to often with no outlet for either of us. People don’t “see” the pain, so they don’t understand.
    Thank you again for getting this out there.
    Have a great day!

  4. Dear Roger:
    Thank you so much for your comments. The caregiver strain is intense. I have written several blogs over the years on this site about the impact chronic pain has on family members as well as friends. I am always so impressed with the amount of love and attention that compassionate spouses and other family members devote to researching, attending to and hoping for relief for their loved one. The psychic pain they themselves experience watching another suffer cannot be undervalued. I hesitate to call fibro a disease but rather a dis-ease of the Central Nervous System. There is hope out there for all of us if we become the expert of our own lives. Motion in the form of TaiChi, Qi-Gong, Gentle Yoga for example, as well as mild exercise, in particular doing daily mindfulness meditation, are among the many strategies that have been shown to help reduce the pain. Please do remember- PAIN IS IN THE BRAIN! The many books and articles written by neuroscientists are invaluable as more and more brain research is available with various strategies to ‘change the brain’. See other blogs I have written on this subject and the books I have highlighted.
    Best wishes; keep up the caring- she needs it!
    Barbara

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