Some believe the disease is just a problem. Also among doctors there is a part that flies from it, says Professor.
– Fibromyalgia is associated with many grown up ladies who have a bit of pain everywhere. But that’s the disease, one day you’ve got an arm on one leg, the next day in a leg, “explains Elena Bogen Slydal, organizational consultant at the Norwegian Fibromyalgia Association, at KK.no.
There is no central register of how many people have fibromyalgia in Norway today, but it is estimated that between 100,000 and 150,000 Norwegians have diagnosed that – although it has been known for many decades – is often seen.
According to Norway’s Fibromyalgia Federation, about 90 percent of all people who get the disease are women and the symptoms are chronic muscle pain, but also fatigue.
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Belief fibromyalgia is imaginary
Slydal says that patients with fibromyalgia often experience that they are not taken seriously. She believes that the prejudices exist among most people, but also among doctors and other professionals with whom the patient is in contact.
“When doctors are asked to rate which diseases it is most prestigious to work with, always fibromyalgia ends at the bottom,” she says.
Professor Egil Andreas Fors at the Department of Social Medicine and General Medical Research Unit at NTNU is among Norway’s foremost experts in the disease. He confirms the attitudes Slydal describes.
“There are clearly many who have prejudice to the disease. Also among doctors and researchers, there is a part that flies from fibromyalgia, he tells KK.no.
Both him and the Norwegian Fibromyalgia Federation believe the prejudices are largely about the fact that there has been a lot of uncertainty about what fibromyalgia really is.
“Fibromyalgia is difficult to measure, the causality is complicated, and then it’s a part that denies the disease, and think fibromyalgia is just a fool,” says Fors.
That it does not seem that you have fibromyalgia, it also contributes to the prejudices of Norway’s Fibromyalgia Federation.
The cause of fibromyalgia
Today, however, one knows about the disease fibromyalgia. The disease is usually characterized by chronic muscular pain, other symptoms include fatigue, headache, stiffness in the body, dizziness, nausea, internal frost, depression, anxiety and sleep problems . There are several factors that can make it happen, both biological and genetic, as well as stressors and factors in the nervous system.
Among those who get the disease, there are usually two main groups.
“The most vulnerable can get fibromyalgia without there being any other specific reason than that they are genetically disposed, and then they are debuting the disease before the age of 20,” says Fors.
The other group has less genetic disposition, and may be patients who have been exposed to prolonged strains. The reasons can be physical, but also mental.
“Risk factors include sleep problems, trauma and abuse, migraine, anxiety, depression, low exercise, long term stretching or excessive alertness for the body (stress activation),” he said.
The professor and the Norwegian Fibromyalgia Federation see many cases of women with fibromyalgia, who have pressed themselves for a long time.
“What we often know about these women is that they have often been” good girls “. If you drive long enough for too much gear, the body will tell, “said Hege Tegler, Secretary General of Norway’s Fibromyalgia Federation.
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The prejudice goes beyond the patients
The positions of fibromyalgia are not without consequences. Norway’s Fibromyalgia Federation believes it goes directly beyond the patients.
“We hear many and serious stories about how patients are not seen, believed or taken seriously in a healthcare system that will take care of them. This means that they get the necessary help and adaptation too late and the disease image deteriorates, “says Tegler.
Kari Sollien, director of the General Public Health Association, says to KK.no that she understands the criticism of doctors.
“I think they are partly right when they describe the attitudes some have for fibromyalgia. However, I think it has changed a bit in recent years. We have gained more knowledge of causality and then increase the status, and I hope that patients will notice, “says Sollien.
She believes some GPs think it is difficult to treat and follow up patients with fibromyalgia. “I think they are partly right when they describe the attitudes some have for fibromyalgia.
“It is expected that we will offer a solution and it may be uncomfortable to be in a situation over time where you can not be the good helper you want to be,” says Sollien.
She encourages patients who do not feel they get the help they need to change their GP.
Professor Egil Andreas Fors believes patients with fibromyalgia require a little extra of general practitioners because the causes of the disease are complex and the treatment therefore must be interdisciplinary.
“There are several good treatment options around the country, but we know, for example, that some patients receive Paralgin for the pain, but it is not proven to be effective. Others are told to lie down and relax while others are told to work hard, even though we know that both can be unfavorable, he says, adding that in addition to interdisciplinary treatment, it is also important to treat each single risk factor.
“For example, the sleep problem, if it is part of the disease picture,” he says, and recommends patients who find that they are not getting adequate help seeking advice from the Norwegian Fibromyalgia Federation.
This case has previously been published on KK.no, but is retrieved for the benefit of new readers