There are days when you can’t get out of bed. Eating a spoonful of soup becomes a challenge. It is difficult to read even a short article because pain disturbs concentration. In everyday life, fibromyalgia is visible to the naked eye. It cannot be seen in research. And it’s hard to understand. Many people heard about this disease for the first time in their lives when Lady Gaga said she had it.
- Fibromyalgia is a state of the nervous system that changes the perception of pain and the way we experience it. Virtually the whole body hurts. This disease is often confused with depression. Fibromyalgia can be compared to an injured organism. – Daily suffering reduces its activity. This suffering appears in the stories of almost all patients – says Łukasz Małecki
- A man suffering from this disease is rare. The disease usually affects women – at least this is the conclusion from the few studies available. It is difficult to judge how it really is
- It is difficult to find a specialist because many doctors do not understand fibromyalgia. He can’t recognize her, he ignores her
- Lady Gaga publicly announced a year ago that she suffers from fibromyalgia. She also showed the disease in the documentary “Five Foot Two”. Morgan Freeman also confessed. Then more talk about the disease started.
Fibromyalgia cannot be seen. It is not visible in x-rays or blood tests, it manifests itself differently in everyone. There is, however, one common element – the ubiquitous pain.
Fibromyalgia pain does not come directly from injury or inflammation, the drug says. Łukasz Małecki from the hospital. Dietl in Krakow. He is one of the doctors in Poland dealing with this disease. We talk for over three hours, but it still seems not enough to explain all the intricacies of fibromyalgia. – It is a state of the nervous system that changes the perception of pain and the way we experience it. It has a diffuse character, which is why practically the whole body hurts – we hear.
The concept of fibromyalgia was introduced in 1976, but it was not until 14 years later that the American College of Rheumatology formulated the first widely accepted diagnostic criteria. Initially, it was mainly dealt with by rheumatologists, due to the earlier assumptions that it was an inflammatory process, in the nineties the importance of the role of the endocrine and nervous systems began to be emphasized. – In the 90s it was established that in order to diagnose it, 18 pressure points must be checked and pain detected in 11 of them. – explains Małecki. – In 2010, the criteria were changed, including the diagnosis of cognitive impairment, morning fatigue, mood disorders and the assessment of the patient’s reported pain. Pain that should appear in the selected areas of the body and last for at least three months. The need to test pressure points was then eliminated – he explains.
The recent criteria of the American College of Rheumatology continue to rely not only on the assessment of diffuse pain, but also the other symptoms listed. It is relatively easier to detect primary fibromyalgia, which simply meets these diagnostic criteria. The problem appears if it is a secondary form – resulting from a past disease or when fibromyalgia accompanies other disorders. Then it can be mistaken for an exacerbation of this condition.
It’s even worse when it is confused with depression. These are two separate diseases with overlapping symptoms. – Depression is not thought to cause fibromyalgia – it is fibromyalgia that can contribute to mood disorders. It hurts, so the mood is getting worse. And the pain lasts all the time – explains Małecki.
Elizabeth. “The pain spread to the muscles, head, legs”
When we call Elżbieta from Wrocław, she asks for patience. “I get tired easily, we may have to interrupt the conversation,” he says.
She first heard about fibromyalgia 13 years ago, but the symptoms showed up in her childhood. – I was relieved of PE because even after the slightest effort my nose was bleeding, my head ached and I was weak – she recalls.
For years, no one knew what was wrong with her. The pain in the back, radiating down to my stomach, was becoming unbearable. Fatigue did not allow her to function normally. She probably passed all possible tests. Doctors wrung their hands to show her results. They were normal, as in a healthy person. – And I knew that I wasn’t healthy, I couldn’t be. The pain spread to my muscles, my head, my legs, my whole body. There were other symptoms – visual disturbances, problems with concentration and speaking, anxiety. At one point, I was so weak that I couldn’t stand up normally. I couldn’t work, I stopped leaving home, I lost a lot of connections. Finally, after six years, I found out from a rheumatologist that it could be fibromyalgia. It is a difficult disease, but the very awareness that I know what is wrong with me after so many years has given me hope for a cure – he says.
She got medication, it helped. After three years, the symptoms began to return with redoubled strength. Now no measures are helping anymore.
Isabella. «You do all possible examinations, you« pass »successive hospitals, and doctors still cannot diagnose»
“It is better to know what you are dying of,” she heard from a neurologist who indicated dermatomyositis in her initial diagnosis. The words paralyzed her. They sounded like a sentence. Due to stress and symptoms of tetany, she was taken to hospital at the Emergency Room. The research, however, found nothing disturbing. Only reduced levels of calcium, magnesium and other micronutrients. Meanwhile, her whole body ached. Anyway, it hurt for years.
Izabela from Piaseczno remembers that it started with an accident. She had survived him as a young girl, had a broken spine and torn back muscles. She underwent two complicated operations. And although she returned to general fitness, the neurological disorders remained. Rehabilitation was her everyday life. However, during one of the camps, she noticed that some exercises hurt her hands. The ones that required a hand support were almost impossible to do. Another rehabilitation camp made her realize that she could not participate in group activities. She was exhausted.
– When you get sick, you do all possible examinations, you ‘pass’ successive hospitals, and doctors still cannot diagnose you, you break down. Initially, there is hope, then anger and frustration, and then indifference and depression. Apart from the body, the psyche also starts to get sick – she adds.
The first specialist to suggest fibromyalgia was an endocrinologist. Then Izabela started looking for information about the disease on the Internet. She found a blog by a girl with similar symptoms. After exchanging a few e-mails, it was almost certain that they had the same disease. From then on, they support each other.
Mariusz. «I spent two years in bed in total»
– Pain forced me to take medications, I swallowed them like candy. Only they allowed me to function in any way, to go to work. I ate the pack a day – says Mariusz from Toruń. The one who believed that a man could not be sick.
– Nothing previously indicated that something was wrong with my health. It started with fatigue, and then more symptoms: leg pains, such as after a fracture, arms, head. Later, constipation, dry eyes and mouth, hair loss appeared – he lists.
He did not come to a specialist until he had a severe attack from discontinuing his medications. The pain grew so severe it paralyzed my entire body. It was stiff, I couldn’t move. I ended up in the hospital. Doctors concluded that it was some kind of rheumatic disease. Nobody knew what it was – he recalls.
He was tested for lupus, viral hepatitis, venereal diseases, AIDS, Lyme disease. Each time he heard: you are healthy. – And my condition was still heavy. I slept all day, I was not able to work, help my wife with children or at home. I felt bad about it, because not only was I suffering, but I had this conviction: a guy has to be efficient. I was not. I spent a total of two years in bed, he says.
He developed memory lapses and concentration disorders more and more frequently. He did not know then that it was the so-called fibromog, very common in this disease. Five years ago he was given a pressure site test. The doctor said, “There is no medication for fibromyalgia, you have to live with it.”
A man suffering from this disease is rare. Fibromyalgia tends to affect women, according to the few studies available. It is difficult to judge how it really is.
Understanding brings relief
Fibromyalgia can be compared to an injured organism. – Daily suffering reduces its activity. This suffering appears in the stories of almost all patients – says Łukasz Małecki. – It is important to look at this problem as a whole. In 2015, together with a group of Krakow doctors and psychologists at the Dietl and the Małopolska Center of Biotechnology of the Jagiellonian University started a study on a group of patients diagnosed with fibromyalgia. Using magnetic resonance imaging, specialists tried to assess how the pain transmission mechanisms work in the patients’ brains. New information on pain development and processing can help identify the characteristics of the disease, which in turn will enable an appropriate diagnosis and help in treating fibromyalgia more effectively.
– There are scientific works which show that the centers in the brain responsible for pain sensations are more active in patients with fibromyalgia, and those that have analgesic effect – weaker. But there are also studies showing hypersensitivity to pain stimuli of the nerve cells within the spinal cord – enumerates Małecki.
Few specialists in Poland deal with the problem of fibromyalgia, and the research of the Krakow team is only a small step towards understanding it. But its members had yet another, perhaps even more important from the patient’s perspective, purpose: to debunk unjust, harmful myths about the disease. – As doctors, we should listen and trust that it hurts. Although it may often seem that the results of individual tests are okay. Often showing understanding is important. Although it does not help with pain, it brings relief that someone believes and accompanies them – emphasizes Małecki.
Lady Gaga’s disease
It is difficult to find a specialist because many doctors do not understand fibromyalgia. He can’t recognize her, he ignores her.
– I was 29 when my symptoms worsened – says Elżbieta. – All attempts to tell doctors that I am tired and that I am in pain ended up supporting me that I am too young and that I should not think about my diseases, but enjoy life. But how to enjoy it when the whole body hurts? – gets upset.
Lady Gaga, who publicly announced a year ago that she suffers from fibromyalgia, helped. She also showed the disease in the documentary “Five Foot Two”. In one of the scenes she lies covered only with a towel and cries. “My right side hurts, I think it’s a cramp.” As if I had a rope tied to my toe that pulls along the leg, then the rib and the arm. My whole face hurts. I think of other people who suffer like this too, not knowing what it is and having no money for such treatments. I don’t know what I would do if I didn’t have someone to help. What the hell would I do? – says the artist.
“Three years ago, I would assess the level of knowledge of doctors as embarrassing,” says Mariusz. Today, after Gaga announced that she had fibromyalgia, and Morgan Freeman did the same for her, more talk began about our disease. This was the first time I heard the word “fibromyalgia” on TV. Now when I go to the doctor and say I have “fibro” there are no more negative reactions. I hear: understand, sympathize.
“Get over it, there will be better days”
While conducting research, Łukasz Małecki notices that the doubts of friends and family are often the most depressing: – It is difficult for a loved one to understand that someone is in pain all the time – the doctor explains. – If he had cancer, it could be seen under a microscope and excised. “Fibro” does not have a characteristic change at the moment. The patient is tired, weak, withdraws from social life, maintaining family life becomes more and more difficult. Lack of support from relatives in such a situation has a negative effect on the psyche – she emphasizes. At the same time, it reassures that research results are appearing, giving hope for objective diagnostic tests in the future.
When Mariusz hears, “Get over it, there will be better days”, he goes berserk. – I tell you: man, when? When will these days be? – he gets nervous telling us about it. – Our society is not uplifting. We can only kill a man. He was lucky anyway – a patient wife. – The onset of the disease was depressing for her. She didn’t understand, because how could she understand? The guy is young, looks good, but is still sore and asleep. She wanted to meet friends, leave the house, and I retired. Finally, she said, take your medications off and either survive or decompose yourself. I unfolded. Seeing this started to be the greatest support I could count on. She visited doctors with me, looked for solutions and did not give me the feeling that she was tired of it.
Iza understands it well: – My husband supports me a lot, but I can see that he is tired of it. I feel pain every day, so he is used to complaining every day. She cleans, cooks, takes her to research. This is the only person I can talk to openly with. And friends? I’m slowly losing them. I have no strength for meetings, joint trips, parties. Even talking on the phone tires me.
Work, passion, diet
– Can it be treated somehow? – we ask Łukasz Małecki. The doctor spreads his hands. – Opportunities are limited. Common medications usually provide partial relief, not in all patients. There are no clear answers – explains Małecki. – One of the groups of drugs most often used in therapy are antidepressants. Some patients understand it that they eliminate depression and thus the pain symptoms that allegedly result from the mental state. This is not so. The same neurotransmitters on which antidepressants work in psychiatric treatment are responsible for the perception of pain. Some anti-epileptic drugs are also effective. Sometimes psychotherapy helps, by changing the way we deal with pain. Aerobic exercise and dietary interventions are often recommended, and many people also benefit from acupuncture, she says.
Each patient manages fibromyalgia in his own way. Iza is embroidering. When he sits down in the hoop, he can suddenly move his aching hands, he closes himself in his world. He conducts workshops for children. Only in the evening, when he puts the needle down, does he feel the effects of his hobby. Sometimes it even takes a few days to regenerate. – Passion keeps me alive, it is a gift that was given to me in the most difficult period for me. If it weren’t for the disease, I probably wouldn’t have learned about my abilities. I think passion is very much needed by people with fibromyalgia, she says.
Mariusz focused on his diet. – I turned to supplements of natural origin. After three months, I felt the first effects, or 24 hours without pain. I took a loan for several thousand zlotys to take care of myself. Now I don’t have to take painkillers, I can fall into a deep sleep, after two years I was able to go back to work on a crutch. I get out of bed two hours earlier to get started, but I always report to the company on time – he says.
A team of doctors from Krakow aimed at what all specialists in the world who are interested in this disease want to achieve: understand the factors and mechanisms underlying fibromyalgia. Yes, to develop methods of its treatment and prevention. Only you have to wait years for the results of scientific research. People like Elżbieta, Mariusz and Iza suffer here and now. – We doctors should not be afraid to admit that medicine does not yet have ideal solutions for patients. We do not understand fibromyalgia yet, but we can try to understand the patient, says Małecki.
Before the publication of this text, we learned that after eight years Izabela finally received a written confirmation of her illness. The neurologist at the pain clinic under whose care she is now has no doubt that fibromyalgia is a disease and should be treated. Or at least to try.