2024-02-05 09:41:11
“Is your hand hurting? The back of your hand is red.” Kristiana, Ming and Angel asked Ashu, who rubbed the back of his hand and said “OK”. Four people suffer from fibromyalgia and experience pain all over their body every day. Because we share the same pain, we can tell that our fellow patients are in pain just by looking at their little movements.
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Fibromyalgia is commonly known as “Princess Disease” because patients are often misunderstood and complain. Ah Shu and his patients have all experienced being questioned by family and friends that “when you are depressed, you feel pain”, and they have also experienced the frustration of being unable to diagnose the disease after seeking medical treatment for many years. It is a great support for patients that they can understand each other’s pain.
“This is the reason why I established a patient self-help organization.” Ah Shu said that currently, the “Hong Kong Fibromyalgia Association” has about 20 members, most of whom are patients. The goal of the organization is not just to “moan” around the fire, but also to promote awareness among doctors and the public about fibromyalgia, so that patients can receive reasonable medical support and social empathy.
Having a baby is easier than having fibromyalgia
The main symptoms of fibromyalgia are widespread pain and tenderness throughout the body. It is said to be genetically related, but the cause is still unknown medically. The incidence rate is higher in women than men. Fibromyalgia needs to be diagnosed through a process of elimination. Patients may need to seek treatment from different specialists. The diagnosis may take several years to more than ten years, causing physical and mental exhaustion to the patient and causing financial burden.
A Shu, who was born in the 1980s, is cheerful, laughs, and likes sports. He was a primary school teacher and taught Chinese and physical education. She recalled that the first time she got sick in her life was during the public examination of the Secondary Seventh Entrance Examination. “I was stretching at that time, and suddenly my whole body became stiff. I couldn’t move, and I couldn’t even bend down. My mother said that it was useless to go to the hospital because she had suffered from a similar situation. When I sought medical treatment, I only received prescription painkillers. I could only wait until my body no longer hurts.” The pain throughout my body became more and more frequent, and it began to affect my daily life. “When I concentrate on work in class, I forget about the pain. After class, it hurts all the time. I didn’t even have the strength to stand up. Once, a student hugged me very happily, and I screamed in pain, asking her to let go. Another time, it hurt when I got up in the morning, and it hurt when sitting, lying down, and standing, and I could only stand in a half-kneeling position. It was a little better, so I half-knelt all morning.” Ashu laughed and said that due to the long-term pain, he could carefully distinguish whether it was muscle pain, neuralgia, vascular pain, skin pain or bone pain. Because teaching with pain is too tiring, Ah Shu has temporarily resigned from his teaching position.
Ah Shu described the pain during the onset of the disease, and Kristiana, Ming and Angel all nodded and expressed that they had the same experience. When asked if the four people interviewed were in pain at the moment, they all said “it hurts all the time.” However, judging from their calm demeanors, it seemed that it was not the same thing. “I often say that this disease is an ‘invisible disability.'” Ming sighed.
“This disease makes us have a higher pain tolerance than ordinary people. When I gave birth a year ago, I didn’t even know the labor pains were happening. I thought it was just a slight discomfort in my stomach, which was similar to the usual physical pain.” Ming laughed and said that she was about to give birth at the time, but she was still confused. But I don’t know, “My grandma had experience and knew that I was about to give birth. She immediately went to the hospital with me and pushed me directly into the delivery room. The doctor said that my cervix had dilated to 8 degrees at that time and I could give birth immediately. I thought it was false contractions. .” The pain of natural childbirth is medically classified as the “highest pain”. When the cervix is dilated to 6 to 8 degrees, it is already unbearably painful.
The cervical dilation period usually takes 10 to 13 hours for a mother giving birth for the first time. The doctor said that the pain increased Ming’s pain tolerance. She only started to feel pain when her cervix dilated to 8 degrees. In the end, it only took her one and a half hours to give birth to her first child. One child. “During the delivery process, the labor pains would come and go. I was curious, ‘How come it suddenly didn’t hurt at all?’ I was in pain every minute and every second for 24 hours a day, but I was shaking during the labor pains? I was sicker than usual after giving birth. The pain is so easy!” Ming said with a laugh. Ming’s experience made her family immediately understand her daily pain. “My grandma told me that she finally understood how much pain I had every day and felt sorry for the pain I suffered every day.” After Ming gave birth, her physical pain was greatly reduced and disappeared. According to research It is suggested that this may be related to the increase in ovarian hormones during pregnancy, but this statement has not yet been confirmed by complete data.
Friends and family cannot empathize, and teasing is the most uncomfortable thing.
“It hurts when I’m depressed,” “Prince’s disease,” and “Why don’t I go back to work just because I’m pretending to be sick?” These are the words most often heard by patients with fibromyalgia, which make them feel quite aggrieved. Adding an extra layer of pain to people with fibromyalgia that no one else can comprehend.
Ah Shu’s family could not understand her plight. “Some family members saw me organizing a self-help organization for patients and kept asking me, ‘Are you sick? Are you sick?’. I could only laugh and say, ‘Maybe this disease is inherited from you. ’, the family just shut up.” Ashu said. Kristiana, a piano and harp teacher, also felt deeply, “When I was in the worst pain, even the water drops hitting my body felt like being hammered down by nails. When I was in so much pain that I couldn’t play the piano, my family still thought I was just a bone. “It hurts.” Sometimes when I mention my condition to my friends, they will say, “It doesn’t even hurt. My whole body hurts when I go back to work.” Kristiana sighed: “Actually, many doctors don’t know much about this disease, and the general public doesn’t know much about it.” I understand that we are also normal. After so many years, I have also become acquainted with it.”
Ah Shu pointed out that there is currently a member of the association who is a caregiver. Because she does not know the disease, she once said the above words to her sick son, “After she got to know me and other sick members, she knew that this disease can really cause severe pain. She I feel very regretful and remorseful for misunderstanding my son.”
Diagnosed after 10 years, doctors say they don’t recognize fibromyalgia
Ah Shu recalled that he first developed the disease when he was about 17 years old, but was not diagnosed until he was 30 years old; Angel developed the disease when he was 12 years old and was diagnosed when he was 24 years old; Ming has been seeking treatment from different specialties in public hospitals for 8 years, but has still not been diagnosed. Difficulty in diagnosis and lack of specialist follow-up are also major problems for fibromyalgia patients. In addition to being confused about physical pain, they also have difficulty explaining their condition to others.
Ah Shu was spinning around in different specialties like a “human ball”. She consulted an orthopedic department and underwent physical examinations such as MRI and X-ray, but the cause could not be found. “I went to see the rheumatologist again. After the blood test, the doctor said I didn’t have rheumatoid factor, so he refused to admit me.” Constantly being rejected, Ah Shu could only look for other treatments, such as traditional Chinese medicine, acupuncture, massage, etc. But there was no progress. “I waited for three years and eight months until I was scheduled to go to the pain department of Tin Shui Wai Hospital. I finally saw the doctor. He did a tender point test on me. There were 18 tender points, and I felt pain in almost half of them. , I was finally diagnosed with fibromyalgia. At that moment, I felt relieved.” Ashu sighed, “At least I know that this is a disease and not an unreasonable pain. When I explain it to others, it is easier for them to understand.” Even if the diagnosis is confirmed, , but the doctor admitted to Ashu that he was not familiar with this disease and suggested that she search for foreign information. “Since there are no other treatments, the doctor said follow-up visits are not very useful. A follow-up visit every two years is enough.”
Ming also sought treatment from different public specialists, but made no progress. Later, she consulted a private psychiatrist, who determined that the pain was caused by physical rather than mental problems. She also tried to see a sports therapist to improve joint mobility, but the pain was still there. Later, she consulted a private doctor who specialized in anesthesia and pain, but the doctor’s words made her uncomfortable. “He saw that I could raise my hands high, and he actually He said, “I think your condition shouldn’t be very painful. It may just be gout, not fibromyalgia.”” Ming then consulted a private doctor in the Department of Immunology. The doctor performed a elimination diagnosis for her and initially thought it was Fibromyalgia, “But the doctor said he didn’t know much about this disease and suggested that I seek treatment from other specialists. I am now rescheduled at a public hospital and it will take two years.”
Diagnosis and treatment of 20,000 patients in Hong Kong “depend on lottery numbers”
Angel’s situation is more complicated than the other two. Angel was bullied by her classmates and experienced drastic changes in her family when she was in the sixth grade of primary school. She turned from a cheerful girl to a sad one. She gradually became unwilling to eat and suffered from pain all over her body. “I was sent to the hospital. In the children’s ward, a psychiatrist concluded that I was suffering from anorexia and arranged for me to be admitted to a mental hospital for treatment. He even said that my pain was caused by mental problems.” Since then, Angel Angel can only be treated in the direction of mental illness. She has been in and out of mental hospitals for more than ten years, but her physical pain has not improved at all. As a mental patient, Angel is discriminated against by others. Even her family does not want to believe that she is in severe physical pain. For more than ten years, Angel’s physical and mental pain has not improved. Suffering. It wasn’t until a few years ago that another doctor referred her to a pain department for examination, and Angel was finally diagnosed with fibromyalgia. “The doctor performed a pressure point test on me, and I felt pain in almost all parts of my body.” After the diagnosis, Angel learned about Ah Shu’s self-help organization for patients through the Rehabilitation Association, so he contacted Ah Shu. “I told Ashu that I was really in pain, and she said that she believed me and understood how much pain I had. After hearing this, I couldn’t help but burst into tears. This was the first time in so many years that someone understood my pain,” Angel said. By now I was crying.
Kristiana, who was diagnosed within a year, is one of the lucky patients. She consulted a private doctor since the onset of the disease. “I know that it will take many years to get an appointment in a public hospital, and you may need to see different specialists. I have to work and can’t delay.” Kristiana said that it was a “lucky thing” that she was diagnosed in a short period of time. “The rheumatologist I saw happened to be Awareness of the disease does not mean that all patients can be diagnosed by private doctors.” According to research, it is estimated that there are 20,000 patients in Hong Kong. This disease is not a rare disease. Kristiana said that the medical treatment experience of patients reflects the medical staff in Hong Kong There is a critical lack of understanding of the symptoms, severity and type of pain experienced by people with fibromyalgia, and the impact this disease has on daily life.
Pain can easily cause depression and painkillers have side effects
The cause of fibromyalgia is unknown, and current treatment focuses on relieving pain, improving mood, and alleviating depression. Every time he mentioned the pain in his body, Ashu laughed, as if it was not the same thing. But when he suffered the pain alone at night, Ashu also shed tears countless times, “When the illness is severe and the pain is severe, I can’t sleep. I also thought about dying,” Ashu said. After being diagnosed, Ah Shu was also referred to the Department of Comprehensive Psychology and Clinical Psychology for follow-up. “The doctor pointed out that pain can easily cause depression. He prescribed serotonin to help me improve my mood. The clinical psychologist taught me to coexist with pain and learn meditation. , and even arranged for me to meet a social worker.”
People with fibromyalgia have difficulty standing up, making it difficult to work full-time. Kristiana’s attacks became more and more frequent, from once every few months to once a month, several times a week, and later every day, which forced her to quit her full-time job in 2012 and turn to part-time piano teaching. However, seeking treatment from a private doctor is expensive in terms of consultation fee and medication. Two painkillers are taken every day, each costing about 15 yuan, as well as antidepressants, etc. This is a burden for patients who only have half-time income or are unemployed. Quite heavy. Kristiana’s doctor referred her to a specialist in a public hospital to reduce medical expenses, but Kristiana developed side effects after switching to the medicines taken in the public hospital. “The ingredients of the drugs are the same but the manufacturers are different. I feel that the pain relief is reduced, and I also experience side effects such as cold sweats, drowsiness, and nausea, which makes it difficult for me to work. So the doctor at the public hospital had to write a prescription for me to go to the local pharmacy to buy the medicine at my own expense. For the past two or three years, the medicines I used to take were publicly funded, so I could get them at public hospitals.”
Ah Shu and Angel also experienced serious side effects caused by taking painkillers. “One time I had to go out for an exam while I was in the orthopedic ward, so I asked the doctor to temporarily discharge me. He gave me a prescription for painkillers containing morphine. After taking the medicine, I was temporarily discharged from the hospital. It hurts. Who knew I would go into shock as soon as I was discharged from the hospital and had to return to the hospital immediately,” said Ashu.
The spiritual comfort of fellow travelers is worth taking medicine, and we hope that Hong Kong will set up a specialist
Ah Shu, Kristiana, and Ming met through a Hong Kong social media group for fibromyalgia. Ah Shu recruited patients to join the instant messaging group to have closer contact and organize the patient self-help organization “Hong Kong Fibromyalgia Association.” “In the beginning, it was really about sitting around the stove,” Ashu said with a smile, but it turned out that the spiritual comfort was worth taking medicine. “Sometimes patients sent messages saying they were in pain, and other patients responded, saying, ‘I understand,’ and ‘I’m in pain too. “, which resonates very much. I was in severe pain one day, but I had to go to work. I groaned in the group, and everyone immediately responded. Some said to take leave, and some comforted me. It really felt warm.” The patients will also share the fibromyalgia information they have seen with the group members, such as foods that are prone to the disease, the impact of weather on the disease, etc. Kristiana also said that the information shared by patients was very useful and she understood the disease better.
In addition to receiving comfort and information exchange, Kristiana and Angel also hope to help more people on the road through their own diagnosis and treatment experience. “My medical experience in private hospitals, medication information, etc. can be shared with fellow travelers,” Kristiana said. Angel also has the same wish, “I want to share my own difficulties in seeking medical treatment so that others will not take the wrong path I took. I also hope that more doctors will recognize this disease.”
Ming believes that fibromyalgia involves many areas and cannot be diagnosed and treated by just one specialty. He hopes that more doctors will understand this disease. “As far as Asia is concerned, Taiwan has the most detailed research on fibromyalgia. Statistics indicate that the affected population is approximately 4%, and there is almost no research on this disease in Hong Kong,” Ming said. Ah Shu also hopes that the Hong Kong Fibromyalgia Association can work closely with medical staff to let more doctors understand this disease. “Since the symptoms of fibromyalgia patients involve different body parts, patients are treated in different medical departments such as pain department, rheumatology department, brain medicine department, psychiatry department, neurology department, immunology and allergy department, gastroenterology department, etc. However, The doctors are not connected. In the long run, I hope that Hong Kong can set up a specialty for fibromyalgia and bring together doctors from different specialists to help patients.”
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Written by: Hong Kong Society for Rehabilitation Community Rehabilitation Network Patient Mutual Help Development Center
1707157104
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