Carol Ross (Fibromyalgia Wales) - Scepticism of Fibromyalgia
The 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome provide recommendations for the recognition and management of fibromyalgia. One section of the guideline asks, “How can prejudice and scepticism regarding the validity of fibromyalgia be countered?”.
In this section the guideline points out, “When physicians prejudge FM patients in moralising terms and believe them to be illness-focused, demanding and medicalized, the patient doctor alliance will be eroded with adverse effect on patient outcome”.
The guideline alludes to the “scepticism regarding a syndrome of subjective complaints”. A recent informal survey of GPs in Wales (n=30) asked “What do you think about Fibromyalgia?” Responses were mixed:-
- 'Nightmare consultation'
- Clinical entity - but difficult to diagnose
- I am dubious about its existence as a distinct clinical entity. Most patients that I have seen who do, or might have it, as a diagnosis, have a complex mixture of "somatopsychosocial" symptoms, with generalised sadness, distress and misery
- I think it probably comes under the umbrella of psychosomatic. I have no problem with this. I feel, with no justification, that patients are fearing pain in areas which tend to be painful.....
- It exists
- It is a symptom description that has evolved into a spurious diagnosis although probably multifactorial
- Made up disease
- Very useful concept, which allows the clinician to promote beneficial lifestyle changes (and psychological techniques such as CBT) to patients who appear to have lost their 'pain filter', and who would otherwise resist such initiatives
- I try and make it a positive decision to diagnose fm and move the patient forward in coping with their symptoms
- If you mean do I think it's a "real" disease - then I do, as if patients perceive pain or fatigue then we, as their doctors, should accept this even if we don't have a "test" to confirm the diagnosis. I do think it's tricky to manage and each treatment has to be tailored to the patient
With such a wide range of opinion it is likely that patients with fibromyalgia are receiving different levels of support, advice and treatment.
The same group were asked “What characteristics do patients with Fibromyalgia exhibit?” again responses varied:-
- Chronic fatigue. Easy irritability with localised tender spots. Often much worse after a "viral illness"
- Female, neurotic, slim
- Frequent attendance and poor coping skills
- Global pain causing significant debility. Lack of response to analgesia. Psychological distress and helplessness
Some of the responses could explain why patients with fibromyalgia often complain of a lack of engagement from the medical profession (Google fibromyalgia and look at some of the forums).
The final question asked in this survey reflected the doctor’s feelings in the consultation. How do patients with Fibromyalgia make you feel?
- Challenged, although usually I just go along with their understandings. I don't know if it is helpful to label it apart from rheumatologists being able to discharge them!
- Depressed, as condition is chronic and these patients need a lot of input
- Difficult to treat and I would like more time to take a history, examine them and formulate a plan
- Frustrated and irritated
- Good, because at last I can do something for this sizeable group of patients: mainly along the lines of getting THEM to make changes
- Gut reaction is Powerless / Heartsink... but try and make myself see them as a challenge as to how my relationship with them can be therapeutic
- I get immensely satisfied when a patient with fibromyalgia comes into my consulting room smiling!
- Oh no! A 30-minutes consultation in a 10-minutes slot...
- Wish I had something better to offer in terms of diagnostic certainty and therapeutic effectiveness
Even a small cohort of GPs demonstrate quite clearly the controversy surrounding a diagnosis of fibromyalgia.
This word cloud is constructed from the text of the responses – the larger the word appears the more it was used in the response to the survey.