Understanding the pain of fibromyalgia

Many healthcare professionals find fibromyalgia difficult to believe as “a real disease” and most of all difficult to handle, and to be honest it is not so difficult to see why. Doctors and other healthcare professionals have learned how to search for diseases based on the specific symptoms the patients present, but fibromyalgia – and several other chronic pain syndromes – do not fit into that model.

The patients are presenting a broad spectrum of subjective symptoms and feelings that can not be objectified. A patient presenting a pain problem must in general be examined for the reason for the pain based on the localisation of the pain, but in conditions like fibromyalgia the pain is so widespread, that it is difficult to detect where it started and thereby to look for evidence for disease. The pain is “all over,” which actually is a part of the diagnostic criteria’s. What more is, the examination of the patient will often not show any specific signs of disease, and when diagnostic procedures like MRI and X-rays are used we find no signs of pathology or just hints of an explanation. Pharmaceuticals normally used for pain problems like NSAID and opioids are often prescribed, but they have only little or often no effect. And what more is, the condition is complicated with sleep problems, an extreme tiredness, mood disorders and more.

No wonder it is a challenge both for the health professional and for the patient whose proxies often also will find it difficult to understand and accept a situation with “pain all over,” with no signs of an explanation, not responding to what seems to be relevant pharmaceuticals and complicated with some psychological problems.

Presented with patients with these symptoms and sensations health professionals will often find their authority and self-image challenged, since the symptoms and complaints presented by the patients do not fit into to the normal biomedical frame for understanding and treating medical conditions, and into the traditional understanding of scientific and evidence based disease management, that are an deep and integrated part of our pride for what we do and how we work.

In the same manner the patient’s relatives might find the condition difficult to accept and understand, which might lead to even further stigmatization and have huge social consequences.

From neuropsychological research we now know that our brain is constantly busy trying to find meaningful patterns, both when the data make sense and when they don’t. This is beyond our control, and it helps us constantly interacting with the world around us and helps us live a normal life, but it can also lead us the wrong way. Healthcare professionals presented with the symptoms of fibromyalgia might unconsciously, due to the lack of meaningful data, draw the wrong conclusion that it is a “clear psychological case,” and relatives might be led to disbelief. The person suffering from the condition might on the other hand be led to the belief that it must be possible to find an objective explanation for the pain and its consequences, that some kind of pathology must be found, based on the their learned experience that injury leads to pain and pain is due to an injury.

No, it is indeed not so difficult to understand why persons with fibromyalgia are met with disbelief and doubt by healthcare professionals, relatives and perhaps often by them selves.

But it is a fact, that fibromyalgia is a well-defined condition, composed of symptoms with widespread pain combined with cognitive and psychological symptoms. It is also a fact, that scientific research has provided us with a evidence and understanding of neurological changes and transformations leading to the complex neurological and psychological alterations composing syndromes like fibromyalgia, and also other chronic pain syndromes like nonspecific low back pain and whiplash syndrome.

Whether we trust this evidence or not is it should be quite obvious, that these persons are living with a low quality of life. We need to accept this, so we (both healthcare professionals and patients) can act to improve the condition even though the improvements often are minor, have long responding time and changes forward and backward over time. The conditions can not be cured but it can be treated. We need to educate patients, healthcare professionals, relatives and indeed politicians and other decision makers to have and to share an understanding of these conditions, and that we need to accept this to help those affected by the condition. We must learn those involved and responsible that it is not enough to look at the symptom “pain” but rather we must focus of the whole complex by trying to improve the quality of life based on knowledge.

Kim Kristiansen is a family physician in Denmark who blogs at Picture of Pain.

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  • sydney moirangthem

    Fibromyalgia is not difficult to understand nor is a new disease. May be the author finds it new to him. There are lot of literature available in the net about it. 

    • http://www.facebook.com/people/Marcos-Renato-Assis/100001647363819 Marcos Renato Assis

      As many others syndromes fibromyalgia doesn’t have complementary exams for
      confirmation.

      Pain is real and individual. As physicians or other health care professionals
      we need to believe these people. I can assure you that a people purely lying
      about his/her suffering is a very rare condition easily discoverable.

      We have so much to learn about this disease (or these diseases) that causes pain
      amplification but on the other hand many concepts should already be
      widely disseminated as the importance of differential diagnosis and
      associated conditions and also the multiple aspects of the treatment
      which is not restricted to appropriate medicines but includes regular
      physical exercise practice, leisure activities and good coping.

      Talking about cure I need to ask you how many diseases we really heal?
      Diabetes, hypertension, depression? In fact while we are living we
      follow a dynamic process of health-illness. Of course I agree it is a
      chronic condition, but I also know several people who receive this
      diagnosis and now do not complain more about pain, some of them even
      without medications, but usually they modified their lifestyle. Is it a kind of cure? I would
      rather say that it is choice and effort to achieve a life with more
      happiness.

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    Doctors have a problem recognizing fibromyalgia as a disease, because it’s not a disease.

    Fibromyalgia is not a disease, it’s a syndrome.

    http://www.fmaware.org/PageServerded3.html?pagename=fibromyalgia

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

    That doesn’t mean that fibromyalgia does not exist. If you have a
    certain pattern of symptoms, and do NOT have a number of other disease
    states that could explain the condition, you have fibromyalgia.

    http://www.nfra.net/Diagnost.htm (1990 criteria)

    To call it a disease implies that we know the pathophysiologic mechanism.

    We don’t.

    That doesn’t mean that you do nothing. It means you don’t do the patient
    any favors be claiming knowledge we don’t have, or doing treatments
    that do not help or may make things worse.

  • Anonymous

    Dear Author –
    Have you thought of prescribing your patients with a placebo ‘pain killer’ to see if it works, so that you may rule out the psychosomatic aspect of the syndrome and those who are just seeking pain medication?

    I ask you this because I was told by my ex-PCP that my pain was psychosomatic and he was SURE to make sure it was documented in my medical record as such and refused any medication other and NSAIDs.  I switch PCPs and at my initial visit, he asked me NO LESS than 200 questions and did a thorough physical examination before ordering multiple blood tests (same day).  4 weeks later I had a clear diagnosis of Rheumatoid Arthritis.  THIS explained everything that I had been experiencing. He also suggested that I may have mild fibromyalgia.

    My point being – the new doctor listened and did not immediately suspect me of drug seeking.  There may ACTUALLY be something wrong.  Thankfully, due to my current cocktail of medications, my pain is almost tolerable/livable.  My doctor is honest with me and told me that he cannot cure me…only that he could just help make me more comfortable and help me live as close to a normal life as possible.

  • http://www.howtobesick.com Toni Bernhard

    Thanks for this informative article. Readers might be interested in a piece I wrote for Psychology Today on how Fibromyalgia is mis-named:

    http://www.psychologytoday.com/blog/turning-straw-gold/201201/who-comes-these-names-plea-truth-in-labeling-medical-conditions

  • Anonymous

    Toni: just read your article at psychology today. I think the prefix “fibro” denote fibrous or connective tissue, “my” is for muscle, and “algia” is for pain. “myalgia” means muscle pain. This doesn’t really change the thrust of your article, but it’s best to be accurate about such specifics.

    • http://www.howtobesick.com Toni Bernhard

      drWorm – I did some Googling and you are absolutely right. I was so used to reading it (in articles on Fibromyalgia) the way I had it, that I didn’t check for myself. I’ve edited the article. Thanks so much for correcting me. Warmest wishes, Toni

      • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

        Dermatosis papulosa nigra. Think of those little black skin bumps on Morgan Freeman’s face, and Condoleezza Rice’s face. Actually, I think Condi had them removed, last time I saw her on a news show. They’re benign little bumps of black skin, seen most commonly in blacks.

        So somebody comes in, saying “I have these little black bumps of skin”. I say “you have dermatosis papulosa nigra”.

        Patient thinks Dr. Ninguem is a genius. All I did is say “little black bumps of skin” in Latin.

        “I have pain in this part of the foot (pointing to the metatarsals)”

        “You have metatarsalgia”. All I said was pain at the metatarsals, translated into a classical language.

        Similar with fibromyalgia. A mix of Greek and Latin root words, doctors are notorious for that. All you’re doing is describing a pattern of pain. It tells you nothing about what’s causing the problem.

        Not to sound like a nihilist, but it’s fair to remember we have nice theories of what might be causing this syndrome, but basically we don’t know.

        Until we do know, it’s fairly called a syndrome, not a disease.

  • Anonymous

    I was diagnosed with fibromyalgia some 20 years ago.  Then in 1998 I was diagnosed with Hashimoto’s Thyroiditis. Lo and behold, my “fibromyalgia” symptoms evaporated as my thyroid levels were optimized with Thyroid USP.  In more than a decade of talking with other patients, this experience seems to be fairly common.

    • Anonymous

      Also, I discovered that my father (now deceased) long ago received a diagnosis of “fibrositis” which evidently is an old school term for what is now called fibromyalgia.  Looking back, I suspect he may have had hypothyroidism too.