Fibromyalgia: An argument against being mentally ‘ill’

” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates

Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ‘symptoms’ which appear to be somewhat universal, that is, primarily pain, fatigue, sleeplessness and often depression.

The official diagnosis was made in 1990 by a Committee of the American College of Rheumatologists, lead author Dr. Fredrick Wolfe, who has since suggested that it is actually a response to stress, depression and anxiety (quoted in Grot and Horwitz)417jNg4qTVL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA115_. While I subscribe to this view that fibromyalgia and its cousin chronic fatigue, along with other invisible dis-eases like restless legs (and autism which I have discussed in another blog) are not actual diseases, I also realize that there is a danger in classifying those of us with these conditions as hysterics who cannot manage our lives and have given in to the role of a sick person.

Nothing can be further than this in my attempt to understand how it came to be that those of us with FMS/CFS/RLS  are highly sensitive to our environments/stimuli/other people’s needs. Yet, even in categorizing ourselves as highly sensitive persons(HSP) we risk the danger of further medicalizing ourselves (primarily through psychiatry) and becoming labelled as people who are in need of intense psychiatric help through medications. We can become labelled as HSPs and then fodder for the pharmaceutical companies and a category of  the ‘mentally ill’. This is indeed a conundrum as we ARE highly sensitive persons with easily aroused nervous systems. The question to be asked: why is this  a disease to be treated? Should we become like those who are treated for such real psychiatric disorders as for example, schizophrenia?

The book Diagnosis , Therapy and Evidence Conundrums in Modern American Medicine, by Gerald N Grot and Allan V Horwitz points out the lack of pathobiology in FMS, CFS, RLS and Autism, all of which have similar characteristics. The pharmaceutical industry has been the victor in all of this and we have fed into it unwillingly in our effort to alleviate our suffering, and obtain some degree of relief. So many of you write to me citing the numerous medications you are taking. The side effects are frightening. “What is to be done?”, a quote I use frequently from a favourite social theorist of mine.

I know of no other answer than that of the neuroscientists who have worked on strategies to change our brain. We can’t change societal views of people whose nervous systems are highly in tune with their environments, but we can (although very difficult) change ourselves. I have read recently that with the work of the scientists who are making tremendous advances in understanding the brain that this will be the first generation of people to be able to look into our own brains. IMAGINE! WE WILL SOON BE ABLE TO SCAN OUR BRAIN!  Brain based therapy!  We will be able to scan our brains for both positive and negative psycho-social emotions! And haven’t we  done this in the past? A friend pointed out that mood rings (I had one!) then bio-feedback (I did that in the 1980s!) were both attempts to  ‘read’ our emotions. While this scanning our brains may seem to be frightening to many (especially neuro-ethicists), it will be a relief to many of us, especially to me since I am usually entertaining thoughts of disaster. Maybe the time will come when I can change those impulses that lead to negative thoughts and images.

The amazing research and theoretical debates about the brain is related to the mystery of how we develop consciousness, and in the case of fibromyalgia, how does our consciousness relate to our real life experiences of pain? Philosophers, neuroscientists, psycho-neurologists, sociologists, neuro-ethicists are studying, researching and debating this mind/body relationship and the nature of consciousness. For those of us who are interested in finding out how our consciousness manages to get to our brains and communicate (that we are in pain), the whole world of science/philosophy is exploding in this regard. Not soon enough for me, nor very understandable for the general public (including me)! But this book may provide some easier to comprehend answers  (Christof Koch, author).questbook

6 comments

  1. Colleen says:

    Thanks for a very interesting post…I loved your statement that we can change ourselves…this is so true and it is exciting to see the results.

  2. Carolyn Thomas says:

    Hello Barbara

    What an interesting topic – as always! Although you write about FMS/CFS/RLS and other diagnoses, much of what you say is fascinatingly applicable to heart patients as well.

    For example, we know that up to 65% of all women heart attack survivors suffer from depression, yet fewer than 10% are appropriately treated. (I’d trade the word ‘identified’ for ‘treated’ in that last bit, actually!). Depression is a double-edged sword – those with depression have a higher rate of subsequent cardiovascular disease, and heart patients have a higher rate of subsequent depression.

    “…We can become labelled as HSPs and then fodder for the pharmaceutical companies and a category of the ‘mentally ill’…”

    Because being ‘mentally ill’ carries such social stigma, few of us who are clinically depressed following a heart attack are willing to admit that this is even an issue. All we know is that something is terribly, terribly wrong. For me, it wasn’t until I attempted a return to work three months after my heart attack, half-days only to start, that I began to realize how truly incapacited by depression and fear and anxiety that I had become. Until then, all I wanted was to get back to work so I could feel “normal” again!

    I recently told my physician my observation that this depression is not so much a psychiatric diagnosis as merely a SITUATIONAL RESPONSE to a series of debilitating physical changes. NO WONDER we feel depressed! It’s kind of a depressing state we find ourselves in! Many cardiologists are now comparing this state to Post Traumatic Stress Disorder instead – a series of reactions to a specific incident or series of incidents, except in our case, the ‘trauma’ is within us, not ‘out there’.

    And speaking of Big Pharma, I recently added up the cost of all of my cardiac meds: over $640 per month. This is shocking to me!! Trouble is, as for all heart patients, the question remains: which one(s) should I stop taking?

    Love your site!
    cheers,
    Carolyn

  3. Barbara Keddy
    Barbara Keddy says:

    Oh Carolyn:
    You make MY heart soar! You are so on target as always!The only difference I can think of between the two of us is that people with cardiac problems have legitimacy whereas with fibromyalgia we are looked upon as mentally ill, complainers, neurotic and stigmatized in other ways.
    The issue of meds is really problematic for both of us. What to take, the cost, the side effects and are they actually working or is it the placebo effect? Fortunately, at least we do not have to spend like our friends do in the US for our health care! My ‘drugs’ are covered by Pharmacare since I am over 65, but since you are younger the cost must be very high. Although once again cheaper than in the US!
    By the way Happy Mother’s Day if you are a mother, and if not I wish you Happy Women’s day!
    Kind regards,
    Barbara

  4. Rebekah says:

    A very interesting read! I honestly do not know much about this disease. I actually just randomly became interested in understanding fibromyalgia because of the very vocal controversy that is affiliated with whether or not it could be considered an actual disease? It’s pretty incredible this world we live in. Knowledge is just a google away! I came across your blog, and found it very informative and illuminating. I also study Sociology, currently a student at Iowa state university- it’s incredible the impact of societal norms we follow and the way it shapes people’s opinions. If it can’t be proved (through science) then it must not be true. I married a man of science who made me a women of science, but everything doesn’t have an answer (or it just doesn’t yet). I guess to me, it’s not too surprising to consider stress and depression/anxiety to be closely related with chronic pain. And just because this is a disease that has no notable findings in science does not require ignorance and a “mental illness” sticker. There’s no question that our cognitive functions directly affect our health. Disturbing to think parts of our Society even consider ones symptoms arr merely a fabricated line, in relation to mental illness and/or depression. It’s great to see an advocate for this very misunderstood disease.

  5. Barbara Keddy
    Barbara Keddy says:

    Thanks for your comments Rebekah: Just to let you know fibromyalgia is NOT a disease, but a dis-ease of the central nervous system! It is lovely to hear from someone who does not suffer from chronic pain being so interested in the challenges of others.
    Best wishes,
    Barbara

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