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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