People with fibromyalgia deserve better!

You can find the video after the text

Today, May 12, is International Fibromyalgia awareness day.

My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation.

In this video I will talk about fibromyalgia and that people with the disease do not get the help they deserve. Everything I say you can find in text with references to the scientific articles it is based on. The link is in the description.

Fibromyalgia is a disease that is mainly characterized by pain in large parts of the body. Those affected also often suffer from a sleep disorder, fatigue, concentration and memory difficulties, and numbness in the body.(1)

About 200 million people in the world have fibromyalgia.(2-4) Unfortunately, less than a third of those who have the disease have been diagnosed and thus received an explanation for their symptoms.(2, 5-7) This means that there are over a hundred million people in the world that have fibromyalgia but do not know about it. These are people who have pain in large parts of the body, who are plagued by difficulty sleeping and fatigue. They are often told by their doctor that they do not know the cause of the pain but that it is not dangerous. Or that the pain is due to stress and that there is nothing else wrong with them. People with fibromyalgia deserve better!

To give a person with fibromyalgia the diagnosis and thereby also giving an explanation for the pain and the other symptoms makes the affected feel better, become less anxious, and thus do not have to seek care as often.(7-9 In an important article written by several of the most recognized researchers and experts on chronic pain, it was considered that diagnosing and providing an explanation to those with fibromyalgia was one of the highest priorities.(10) But what is the reason why so few of those with fibromyalgia have got a diagnosis and explanation of their symptoms? This is probably due to the lack of knowledge about the disease, which means that myths and prejudices exist both in society as a whole and among healthcare professionals.(11,12)

Many people who work in healthcare still believe that the research has not found a cause for fibromyalgia (12 or that the disease is due to, for example, the affected have lost meaning in life and are gaining meaning by taking on the role of suffering from pain.(13 Or that the pain is due to the affected receiving secondary benefits such as sick leave and increased attention from relatives by expressing that they are in pain.(11) People with fibromyalgia deserve better!

There is today extensive research that explains large parts of the mechanisms causing fibromyalgia. Many studies have shown that the pain regulation system in those affected has changed, with impaired function in the pain-suppressing downward nerve paths (14-16) and changed levels of several different neurotransmitters involved in pain regulation.(17,18) People with fibromyalgia also have altered levels of inflammatory cytokines in the central nervous system, making the pain system more sensitive.(19-22) 

It is now proven that people with fibromyalgia have lowered pain thresholds, that is that they get pain more easily.(23-27) You can measure the pain threshold in different ways, for example by pressing on the body and at the same time measuring how hard you press.(23) Those with fibromyalgia get pain at a lower pressure than those not affected. (23,24) Through a technology called functional magnetic resonance imaging, you can see what is happening in the brain in the meantime. Studies have shown that those with fibromyalgia similarly activate the brain at a lower pressure as healthy normally painless people’s brains are activated when they get pain at a harder pressure. (16,28,29) These results should remove all doubt that those with fibromyalgia are really in pain and that fibromyalgia is a real disease.

Prejudices and ignorance about fibromyalgia increase the suffering of those affected. (30,31) They are treated badly in healthcare and are not believed by administrators at the social insurance office.(32) At the same time, many of those with fibromyalgia do not receive the treatment and help from the healthcare for which there is evidence. Although there is no cure yet, there are many treatments that can reduce the symptoms and the suffering of those affected.(10) Various pain management programs can make it easier for people with fibromyalgia to feel better and to live a more meaningful life. Most people with fibromyalgia are not offered these treatments because they do not receive a diagnosis and explanation and because of the ignorance and prejudices that exist in health care. People with fibromyalgia deserve better!

Although several treatment methods have good evidence for fibromyalgia, other treatment methods are often used that have less evidence or no evidence at all, based on healthcare professionals’ interests and on what was thought the pain in fibromyalgia 20-30 years ago such as that it is caused by tense muscles and that the joints in the back do not work as they should.(33) People with fibromyalgia deserve better!

In a study published in 2011, the cost of long-term pain in Sweden was estimated to correspond to 10% of Sweden’s gross domestic product.(34) I think it looks like this in large parts of the world. Shouldn’t we then have higher demands on healthcare when it comes to setting a diagnosis and giving an explanation to those with fibromyalgia? Something we know both improves the well-being of the affected and reduces the costs to society?(7-9) Should we not expect more investments in high-quality healthcare aimed at people with fibromyalgia and long-term pain, to help those affected and reduce the cost of the suffering. Shouldn’t we place higher demands on healthcare professionals’ skills in fibromyalgia and long-term pain so that those affected are treated in a dignified and professional manner? People with fibromyalgia deserve better!

 Healthcare should have a person-centered approach. Person-centered care means that the patient’s story and knowledge must be taken seriously and taken into account in the examination and treatment. This is in stark contrast to what many people with fibromyalgia experience in healthcare. They are often not believed. They are told that the pain is only in the head. That the doctor does not know why it hurts and that you should just learn to live with it, without getting any help to learn to live with it. They are also told not to google it to try to find information on their own. People with fibromyalgia deserve better!

As an affected of fibromyalgia, you should google and also in other ways try to find out as much as you can about your disease. The information that you are unsure of, you should discuss with your doctor, nurse, or physiotherapist and expect them to know what you are asking about.

It is not acceptable for people with fibromyalgia to be treated badly in healthcare. If you feel badly treated, you should tell the care staff you seek help from. If this does not help, discuss it with the manager. And if that does not help, you should report it to the patient board. As a patient, you should not accept being treated in a derogatory and unprofessional manner. People with fibromyalgia deserve better!

It is no longer enough for health care to treat people with fibromyalgia as they do. To better help those with fibromyalgia and long-term pain, there should be at least one person at each health center with increased competence in the area. Just as there is a diabetes nurse at many health centers today, there should be someone on the staff with a specific task to work with fibromyalgia and long-term pain. A person who must be updated and continuously update their colleagues on the state of knowledge in the field.

Instead of just short-term and temporary contact with pain clinics, people with fibromyalgia should have regular contact with a specialist at the clinic with annual follow-ups and with the possibility of closer contact if they need help with documentation, sick leave, and appropriate treatments. It is no longer acceptable for those with fibromyalgia and long-term pain to be a low priority and not get the help they need. People with fibromyalgia deserve better.

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