People with chronic pain and other complaints due to fibromyalgia should be taken seriously, the Health Council advises. Patients experience a lot of misunderstanding. This not only affects their private lives, but also plays a role in, for example, applying for benefits.
There is a lot of uncertainty surrounding fibromyalgia and this also results in a lack of understanding and sometimes even distrust towards people who suffer from it. The Health Council now advises for the first time to recognize fibromyalgia. There is indeed a lot of uncertainty, but “due to the possible seriousness of the complaints” the advisory body considers it important to take the complaints seriously.
The advice was drawn up at the request of the Ministry of Health, Welfare and Sport. The ministry had asked for the latest state of affairs regarding fibromyalgia after a citizen’s initiative by Natalie Kramer, who herself has fibromyalgia, put the problems on the agenda of the House of Representatives. The Health Council then delved into the existing research into fibromyalgia and sat down with patient organizations.
What is fibromyalgia?
People are diagnosed with fibromyalgia when they suffer from pain in their muscles and connective tissue in combination with stiffness and fatigue. It is somewhat similar to the complaints that rheumatism patients have. But unlike rheumatism patients, no physical explanation can be found for the complaints of people with fibromyalgia.
It is estimated that about 2 percent of the world’s population suffers from fibromyalgia. The Health Council assumes a similar estimate for the Netherlands, which amounts to about 350,000 people.
The Health Council deliberately refers to a health problem instead of a disease, because there is discussion in the medical world about what exactly falls under the term ‘disease’.
Uncertainty about origin and treatment
The exact cause of fibromyalgia is still unclear. Scientists suspect that fibromyalgia is caused by a combination of various biological, psychological and social factors. For example, it is thought that these people have an excessive transmission of stimuli, which can make them hypersensitive to pain.
However, the consequences for patients are sometimes serious. Chronic pain puts pressure on their social life and they can lose their jobs. It also often takes a long time for people to receive this diagnosis. In addition, they sometimes have to deal with sceptical healthcare workers or insurance doctors from the UWV benefits agency.
There is no solution for fibromyalgia yet. Although the Health Council sees a very small “beneficial effect” in some treatments, this effect never applies to all patients and it is also unclear whether this will continue in the long term.
For the treatment of fibromyalgia, healthcare workers are best advised to look at the guidelines that have been drawn up for people with chronic pain.
Not only recognition, but also more research
Fibromyalgia is complex, concludes the Health Council, and that is probably why so little is known about the health problems. At the same time, the advisory body also believes that more research can be done. Then perhaps good treatments can also be developed.
In the meantime, according to the Health Council, it is important that fibromyalgia patients receive recognition. Take the complaints and consequences of fibromyalgia seriously and approach patients with “an open and unbiased attitude”, is the advice. This applies not only to healthcare workers, but also to other involved bodies such as the UWV.