Table 3 Verbatim quotations from participants 

 A long medical pathway

Diagnostic delay: [They’ve had a] medical pathway that is very long, they’ve seen 12 million doctors with tons of medical hypotheses (P10).

Medical nomadism: A past, years, years of pain, several MRIs, scintigraphies, examinations of everything, no one’s found anything (P7).

Long course: A patient told us, I’ve been in pain for 15 years […]. If no diagnosis has been reached in 5, 10, or 15 years, that already means first, it’s not severe, which is already reassuring for the patient, but also that it may not be organic (P13).

 Clinical history suggestive of chronic idiopathic MSP

Precipitating factor: Often there’s a history of trauma that can sometimes be very anecdotal […]. There was a little thing that happened and as a result a whole set of things crystalized in a place in the body (P3).

Pain scores: Patients who always give themselves a 10, it’s almost never organic (P16).

Pain description: Very atypical pain: it burns, it stings, that’s not very organic (P4); Impalpable/intangible pain, very diffuse, at any point, is going to lead me to suspect it’s partly psychogenic (P17).

Normal clinical and paraclinical examinations: If I find nothing, I go more towards something functional (P1); When there are diagnostic doubts and all the stages and examinations that were done … come back normal, that points toward functional (P6).

Consequences: Functional consequences ... seem to me very important in term of disconnecting from school (P17).

Family history: We’ve had families where finally in fact where everything had been constructed from generation to generation for two or three generations of spondylarthritis when in fact no one had spondylarthritis (P13).

 A feeling of medical/pharmacological impotence

When there are many different treatments used and none were effective, that sets off an alarm (P12).

Nothing works and/or nothing is tolerated because sometimes when nothing is tolerated, that’s a little special too (P19).

 The adolescents’ grievances

“It’s easier for the patient to hold on to something objective by saying, I have rheumatoid arthritis, so they will find a treatment that makes me feel better, whereas if there’s nothing very specific and he’s already tried 36,000 drugs, he says to himself or at least he can say to himself, how can I get better? (P13).

 Reorganization of family functioning

Symbolic role: The pain becomes a member of the family in its own right (P19).

Dysfunctional reorganization: If we take away the child’s pain, there’s no more family system, they don’t know how to function (P20).

Parental reactions: They are always disappointed, they are always disappointed that we haven’t found an organic disease. In the parents’ mind, organic means that we can treat it (P4).

 The professionals’ feelings

Difficulty, doubt, ignorance: Over time, I realize that we are all so hopeless, so embarrassing, and that there are no very objective criteria (P4); I am never very comfortable: the diagnosis of functional pain hides a great deal of ignorance (P4).

Impotence, frustration Some doctors feel frustrated, helpless. It can go as far as conflict... What frustrates me deeply is just to not be able to help them (P15); We feel helpless because we cannot relieve their pain (P19).

Long consultations These are consultations […] that are extremely time-consuming, require a lot of attention, and it’s exhausting (P12).

 The function of pain

The symptom is at two levels, it is first individual, for the subject, it has a place, a function, for the patient, and after that, it becomes part of a family system (P10); When physicians raise the question of the function of the pain, it is perhaps necessary to refer the patient pretty rapidly towards a pain consultation (P19).

 Clinical examination

Absence of relevant objective diagnostic elements: A knee that is totally flexible, a girl who is on her legs, standing, without pain, it’s certainly not inflammatory joint pain (P4).

Existence of sleep disorders without nocturnal pain: They always talk about [pain-free] fatigue even though their nights are all right (P7).

Constellation of associated functional symptoms: Permanent fatigue, headaches, symptoms that absolutely do not correlate with what the paraclinical results or the treatments given (P17).

 The elements of psychological symptomatology

Relational difficulties with peers: They are not very socially skilled at approaching others (P25).

School absences: The less organic it is, the more school absences there are (P6).

Performance anxiety: We often find often […] really substantial anxiety in relation to performance, whether it’s sports or school (P18).

A predominant psychological dimension: I am going to feel stronger resistance when there is a strong psychogenic proportion than when it’s a purely organic disease (P17).

 The diagnostic procedure and treatment tests

Clinical monitoring: The question of the order in time is very important (P11).

Difficulties in using the diagnosis of fibromyalgia: The most difficult situation, it’s the pain that’s enthesopathic, that’s really the hardest because objectively, a purely organic enthesitis can given exactly the same pain on first view, as, in quotation marks, fibromyalgia, a term that I never use, by the way, for fear of letting patients latch onto the idea that they have a chronic disease and fall into the associations of fibromyalgia patients and all that (P3).

Test treatment: When I do not manage to have enough information to decide if it’s functional or organic, I propose a treatment for 2 weeks by NSAID, stop for 3 days, and 2 weeks of step 2 analgesics. What I want to know is the answer to the question: which of these 2 treatments helped most? (P6).