Fibromyalgia Patients Aren’t Snug, Lazy, or Cheaters

The decision of the Minister of Health, Maggie De Block, to no longer reimburse, from 2017, only 18 physiotherapy sessions of 45 minutes instead of 60 previously, for patients suffering from fibromyalgia and chronic fatigue has unleashed the passions on the Web.

“We are not simulators, lazy, …”, exclaimed in particular some Internet users, tired of being told that they were imaginary patients. It is true that if it is misunderstood, this syndrome or set of symptoms (diffuse pain, persistent fatigue, sleep disorders, etc.) remains also poorly known.

With Professor Anne Berquinhead of clinic and coordinator of the Chronic Pain Consultation at the Saint Luc University Clinics, we wanted to find out more about this pathology and what we know about it at the present time.

What is the difference between chronic fatigue and fibromyalgia?

Chronic fatigue and fibromyalgia are very close. Some say it is the same disease and others argue that they are two different presentations of a common phenomenon, which would be quite close. Both share what we call central sensitization, which is a nervous system and in particular a pain system that is hyper-responsive to a variety of stimuli.

One of the difficulties of this pathology is that you don’t see anything on x-rays, in blood tests…

Indeed, but it is not because we see nothing that there is nothing. We have many arguments from research laboratories which show that in these patients, the nervous system – and in particular that of pain – is hypersensitive. This means that patients have pain in relation to stimuli which normally should not hurt, such as hanging a towel, keeping their arms in the air to comb their hair, enduring the cold, etc.

What could we objectively observe?

It is observed that the electrical response of the brain of these people is increased, as well as the concentration of molecules signaling the pain in the fluid which is around the brain. So there is a series of objective arguments that prove that they are not just cozy patients; it’s actually the alarm system that « triggers too much ». Sort of like a fire alarm going off for a cigarette. The pain is very real; the patient does not exaggerate but it remains difficult to document in the examinations.

Can we say that they are in no way pretenders or imaginary patients?

I can’t guarantee it, but in any pathology, there are always people either faking it or thinking they have a pathology when they don’t. If it can exist, I personally don’t see any simulators. I always see people in pain and sometimes it manifests itself more on a rather somatic aspect of pain than on a more psychological aspect. But these are not people who cheat.

Are these, for you, always people in suffering?

Yes, absolutely. When we listen to them, there are generally very heavy life journeys. This does not mean that the symptoms should be reduced to the psychological dimension, but psychological suffering necessarily has an influence on physical suffering.

Can we say that it is a psychosomatic disease?

Yes, in the good sense of the term which means that the psyche influences the soma and vice versa. That said, the word psychosomatic is dangerous because, in people’s minds, it rhymes with imagination. We preferentially use the terms bio-psycho-social disease. There is at the same time the biological, the psychological and the relational.

How then is the diagnosis made?

There are official diagnostic criteria that have been published by associations of American rheumatologists. It’s not a catch-all diagnosis, when you don’t know what to say. There are many objective criteria to say that, in this case, there are arguments to affirm that the nervous system is dysfunctional. These are in particular criteria relating to the characteristics of the pain, to the fact that it is increased rather after the efforts, hypersensitivity, significant fatigue, sleep disorders, concentration, memory… The functioning of the person is disturbed in all these dimensions. There is also clinical observation. And for the diagnosis, we also always check that we are not missing another disease that could look like fibromyalgia.

What exactly do we know about the causes at the present time?

There are associated physiological factors as well as probable genetic factors even though it is not an inherited condition. There are very often life courses where one has the impression that the person has had to take a lot of bio-psycho-social things. For example, it has been shown that patients with prolonged low back pain are more likely to develop fibromyalgia than those without back pain. Having pain somewhere is therefore a risk factor, as are sleep disorders, repeated infections, health problems…

But also difficult family life paths, such as cases having suffered abuse… We sometimes have the impression that these are people who have always taken a lot of things and that there comes a time when their nervous system says « stop », but with real biological modifications. There is, in fibromyalgia, something of the order of burnout or overload.

What about prevalence?

We are talking about 10% of diffuse pain in the general population, of which 3% would be fibromyalgia, with a higher prevalence in women than in men. But it depends on the diagnostic criteria. Fibromyalgia can appear in adolescents as well as in people in their 90s, but in pain centers the average age of patients is between 45 and 50 years old, all pathologies combined.

What are the treatments?

The latest guide lines that have come out really emphasize the importance of physical exercise. But it is very difficult because, for patients, moving hurts. But the doctor tells them: it hurts but you still have to move. However, the only treatment that has really proven itself at the scientific level remains physical activity: it must be gentle, regular, very progressive… Alongside this, there are some drugs that can help manage certain symptoms, such as pain. , sleep disorders… But there is no cure.

Which brings us back to physiotherapy and Maggie de Block’s decision to pay less for sessions. What do you think?

To be honest, I’m quite ambivalent. Because I have patients who really need their weekly physio session. I think it really helps to balance them out and if they didn’t have them they wouldn’t be able to work, for example. At that time, if we compare the cost of a weekly physio session with that of incapacity for work, clearly, there is no comparison. On the other hand, there are other patients for whom I have the impression that they have become accustomed to having their weekly physio session and that, perhaps, they could do without it. Through a period of clear and obvious discomfort. But some patients have managed to find a balance by enrolling, for example, in a yoga class, or a Nordic walking club… It depends very much on the patient, on their emotional and financial resources, on the environment. where he lives… The important thing is to move but the physio is not the only possible modality. Not all fibromyalgia patients need 60 physical therapy sessions a year, but some do.

The details of this decision

The reimbursement of physiotherapy sessions for people with fibromyalgia and chronic fatigue syndrome (CFS) has been modified.

Until now, fibromyalgia and CFS were on the list of specific pathologies, which entitle you to 60 sessions of 30 minutes.

Reimbursement is not deleted but moved to the heading of current benefits. Patients here are entitled to 18 sessions. The doctor can then always prescribe 18 additional sessions for a related pathology or for another pathology.

The advantage is that the sessions now last 45 minutes instead of 30 minutes.

The decision was taken by the Technical Council of Physiotherapy:

– after consulting all the experts in medicine and physiotherapy from Belgian universities

– following a study of the scientific literature

– following a report by the Federal Expertise Center (KCE).

Patients no longer need to fill in special forms and send them to the health insurance fund. A prescription from the attending physician is sufficient.

Testimony

Jenny, between two attacks of fibromyalgia

Chance. Today, Jenny feels pretty good. The last bout of fibromyalgia was about two weeks ago. She waits with apprehension for the next one. Tomorrow? Within a week? In a month? She does not know. But what she knows is that she will suffer and that she will remain bedridden. Jenny, now 47, has been living with this disease for ten years. « I felt pain all over my body, as if I had bruises everywhere, chronic fatigue and muscle deficiency. I could no longer open a bottle, this former executive assistant tells us today « on mutual insurance ». « At first, the doctors thought it was lupus. We did a battery of tests and it was the colored MRI that revealed that the neurotransmitters were not functional.

Until that day of diagnosis, Jenny had never heard of fibromyalgia. Since then, to relieve herself, she takes painkillers. « When I’m not in crisis – which last three or four days – the pain is bearable but it is always there. Diffuse, everywhere in the body, as for a flu-like state », she confides to us. And morale? « After each crisis, it’s difficult. We question ourselves, we ask ourselves: should we continue? ». If Jenny were to qualify fibromyalgia, she would simply say that it is « a debilitating disease, very debilitating ».