When the condition is serious, the patient with compulsory spondylitis is like being put in a condom and unable to move.
Doctor Chen Lifeng saw in an X-ray of the advanced patient that the joint gap between the two bones narrowed and disappeared, and the spine became tightly connected like bamboo. In medicine, this is called "bamboo joint-like change." Those patients whose conditions develop to extreme conditions will become "folding people".
"The pain of bone friction", "like needle pricking", "The whole body is stiff and unable to move"... These are the symptoms that patients often talk about. The pain accompanied them, like an invisible boulder, bent the spine.
Recently, singer Li Yuchun admitted on the show that he was diagnosed with ankylosing spondylitis. He felt "petrochemical" when he started and needed to take a wheelchair. Previously, many artists such as Zhang Jiayi, Jay Chou , Ada Choi and other artists were reported to have this disease. It occurs more frequently between the ages of 13 and 31, and is the peak of the disease aged 20-30. It occurs rarely before the age of 8 and after the age of 40, and more male patients than female patients.
Chen Lifeng is the director of the Department of Rheumatism and Immunization of the Central Theater Command General Hospital of the People's Liberation Army of China. She told 9Pai News that when patients have symptoms of low back pain, they will first consider going to orthopedics and pain departments, but it is actually a rheumatism and immune disease. This delayed treatment time. But fortunately, it is a relatively easy-to-treat among rheumatoid immune diseases. "Especially after the widespread use of biological agents, the patient's symptoms can be greatly relieved, and the subsequent effects are also good."
【1】Secret pain
Before the symptoms appeared, Luo Jun jointly opened a toy factory with his friend in a county town in Baoding, Hebei. Around 2016, for nearly half a month, the factory was particularly busy. The customer's products need to be urgent, so he worked overtime for several days in a row. One morning, when he was moving goods upstairs, Luo Jun accidentally failed to stand firm. Fortunately, my colleague next to him helped him, but he didn't fall down, but just twisted his waist.
It was fine in the afternoon. After dinner in the evening, Luo Jun went out for a walk. When he walked, his waist felt like it was inflated, with soreness and soreness.
He went to the orthopedic department of a nearby hospital for an examination. The doctor said there was no big problem, it was just lumbar disc herniation , and prescribed painkillers for him and asked him to go home to rest for a few days. Luo Jun took the medicine and rested for a week. The pain was indeed relieved, so he didn't take it seriously.
A month later, Luo Jun moved the bucket and put it on the stairs. When he woke up the next morning, he felt his spine sore and stiff. He didn't see the doctor, so he bought painkillers and plasters, which were hot on his spine, and the pain improved.
He didn't expect that this was just the beginning of the pain. Since then, Luo Jun has a back pain almost every month, and it also hurts if he doesn’t do heavy work, ranging from two or three days to one week. It was okay to walk on the flat ground, but it was difficult to get up and down the stairs. Later, after standing for a long time, my waist was sore.
In early 2018, he quit his job as a toy factory and worked as a security guard near his home. He could sit and work, and his salary dropped from four to five thousand to one or two thousand. "There is no choice. The body is the main focus. If you are a security guard, it is at least easy to take care of yourself first."
Luo Jun relieves the pain through cupping. Photo provided by the respondent
Like Luo Jun, most patients with ankylosing spondylitis have pain in joints such as sacroiliac (posterior and lateral hips), lumbar spine, thoracic vertebrae , cervical spine and other joints. It is not fatal, but it affects the quality of life. Some patients wake up in pain in the middle of the night, their bodies are stiff and they have difficulty turning over. Some patients may experience lameness due to sacroiliac joint and hip joint lesions.
After patients with joint pain, they usually give priority to orthopedics and pain departments rather than rheumatism and immunology departments. When lumbar disc herniation and lumbar muscle strain are common, it is difficult for doctors in other departments to identify early ankylosing spondylitis.
"The misdiagnosis and misdiagnosis rate of this disease are quite high. From the onset to the diagnosis, patients often last 3 to 5 years, which will delay the best treatment period." Chen Lifeng said, "After all, there is a specialty in the profession, and the early stages of the disease is hidden. It is normal to see flowers in the fog." An obvious feature of
Ankylosing spondylitis is that the pain is relieved after activity and the pain worsens after rest. “I pay great attention to asking the patient this question, whether it is worsened after rest or relieved after rest."Chen Lifeng said that patients with lumbar muscle strain usually do less physical work, and they will feel more comfortable after a break. Ankylosing spondylitis is the opposite.
At the end of April 2021, when she was about to graduate from college, Li Qing (pseudonym) felt joint pain in her buttocks. At the beginning, the pain was milder, and she didn't pay much attention, thinking that she had sat for too long. Slowly, the pain became stronger and stronger, and when she walked, there was a pain like a bone rubbing. She didn't dare to put the center of gravity on the muscles of her thighs, leaned forward, and tried to walk with her feet. At the most serious time, she lay on the bed and couldn't move. She couldn't squat down and couldn't stand up, and had to support her roommate when she went to the toilet. The joints on her body hurt, "It hurts so much that she burst into tears. "
She went to a hospital near the school for examination. The doctor guessed that it was a neurological problem, so he prescribed her medicine, and it was useless for a week. She was afraid that she would not graduate on time, so she endured the pain and insisted on making her graduation design almost the same before going to the hospital. This time, the doctor told her that she was likely to suffer from ankylosing spondylitis and arranged for her to be hospitalized.
Li Qing's father Li Wei (pseudonym) is 53 years old this year. When she was about the same age as her daughter, she also suffered joint pain. It hurt 3 In 0 years, it was not until his daughter was diagnosed and the doctor suggested that he also go for a checkup. He knew that the cause of the long-lasting endurance was not sciatica , but ankylosing spondylitis. He had bilateral sacroiliac arthritis stage 2, adhesion of the thoracic bones, and reduced thoracic mobility during breathing.
Father was lucky. Although he had not received effective treatment for a long time, his spine was basically not deformed. "The doctor said this was very accidental. One special situation might occur in a hundred people. "As he gets older, Li Wei's condition has not continued to develop. In the past two years, the pain has not been as frequent as when he was young.
The symptoms of ankylosing spondylitis are not only joint pain, but inflammation may invade multiple parts of the eyes, ears, lungs, kidneys, etc., revealing signs in unexpected forms.
"Some patients have repeated uveitis in their eyes and severe congestion in their eyes. The first time they are in the ophthalmology department may be the first to visit. Only when the eyes are repeatedly attacked and cannot be cured for a long time will it be considered that it is an eye symptoms caused by ankylosing spondylitis. "Chen Lifeng said, "Some patients have gastrointestinal problems, such as diarrhea. There are also young male patients who have intestinal necrosis , thinking it is a gastrointestinal problem, but it is actually local vascular inflammation caused by rheumatism and immune diseases. It will be very dangerous if bleeding occurs. "
【2】Eliminate the bad guy
Luo Jun was diagnosed three times. It was not until the doctor in the third hospital told him with certainty that it was ankylosing spondylitis that he accepted this fact. After
resigned, Luo Jun's pain could not be cured for a long time, and there were even signs of aggravation. When he started the disease, his lower back pain could not be straightened and his head was lowered and he could not be lifted. When he was walking, there was pain of bone friction in the sacroiliac joint. "If it was a lumbar disc herniation, it would not be painful for so long. "
Luo Jun felt something was wrong and went to a hospital in Beijing for examination. The doctor said that this was a symptom of ankylosing spondylitis. Before this, Luo Jun had never heard of ankylosing spondylitis, and no one in his family had this disease. He didn't believe it very much, so he went to several hospitals and "go to the hospital wherever he went." It was not until the doctors of Baoding and Gaobeidian were diagnosed with ankylosing spondylitis that he believed it.
There were treatment methods at that time. Limited, Luo Jun mainly takes painkillers and traditional immunosuppressants such as sulfasalazine . This drug takes slow action and is average when used alone.
Now, after the diagnosis of ankylosing spondylitis, many patients will relieve the condition by injecting biological agents. It is called "magic medicine" by patients. Chen Lifeng explained: "Why does ankylosing spondylitis develop? It is because a bad guy plays an important role. We call it 'tumor necrosis factor α', which is an inflammatory factor. The scientific name of biological agents is tumor necrosis factor alpha inhibitor, which is specially designed to restrain the enemy. If the bad guy is eliminated, he will not cause trouble. The condition will naturally calm down and the patient's symptoms will also improve. "
has good effect, but before 2020, most biological preparations were not included in medical insurance, but because of their high price, they are not commonly used.
In 2019, Luo Jun gave the first biological preparation in the hospital.The doctor asked him to take it once a week, but he was reluctant to go after the first shot. "I don't remember how much it costs. It costs about a few months of salary. I didn't earn much at that time, and I couldn't afford it even if I got it in a while."
After Li Qing shared his experience in getting biologics on Xiaohongshu, someone left a message saying that he was diagnosed with ankylosing spondylitis three years ago and had been given biologics for four months. "At that time, it cost more than 10,000 yuan a month. It has not relapsed for three years. In winter, skiing and surfing in summer, there is nothing wrong with it." Li Qing sighed: "My mother, more than 10,000 yuan, I can't make 10,000 yuan a month."
She is lucky. In 2020, the National Health Insurance Administration and the Ministry of Human Resources and Social Security announced the "National Basic Medical Insurance, Work-related Injury Insurance and Maternity Insurance Drug Catalog (2020)", and tumor necrosis factor α (TNF-α) inhibitors are listed among them, including recombinant human type II tumor necrosis factor receptor-antibody fusion protein and golimuzumab, which belongs to Class B drugs. Now, after medical insurance reimbursement, the self-paid part of a patient's injection of biological preparation is about 300 yuan.
On October 8 this year, Li Qing was hospitalized again. The doctor found that her right sacroiliac arthritis was stage 2, left 1, hip had effusion, so she decided to ask her to take a biological agent once a week for five consecutive weeks, and then changed to once a month.
"The doctor is more cautious and worried that taking oral medicine will cause greater harm to the body. I am still younger, so the medicine I prescribed for me is less harmful, so I take one pill every day." Li Qing said. A box of medicine costs 99 yuan, and I can take it for a month. "I feel that it is basically within the burden."
Compared with Luo Jun, Li Qing accepted the diagnosis faster. "I found out that this disease does not cause death on the Internet, so I am not so scared." But the disease made her irritable. "It's okay when it doesn't hurt, but it's really annoying when it hurts. I have to support my mother when I go to the toilet, and my mentality will change, and I feel that I can't take care of myself in my life."
Li Qing's diagnosis certificate. Photo provided by the interviewee
【3】Life put on a condom
After getting sick, Luo Jun wore more than ordinary people all year round. "It hurts when you catch a cold in the wind. In the summer, people say, 'Are you a fool? You are so thick when you wear it in hot weather?'." In order to absorb sweat, he put on another quick dry clothes on the outside of the long sweat pants.
You must also be careful when sleeping at night. If the quilt is not covered tightly and the wind leaks after turning over, the next morning, the spine will become stiff. "The muscles are tense, like springs." Luo Jun gradually developed the habit and always reserved some time before going to work in the morning. Before getting up, he rubbed his back with his hands or used the remaining heat from a hot water bag. After getting up, he will do some stretching, planks, and sometimes jogging when he goes out.
Because of joint pain, Luo Jun always bowed his head unconsciously and hunched his back. "When walking, people often say that young men should walk with their heads raised and their chests raised." He tried to remind himself to straighten his back, "If you feel uncomfortable, you must persist." But when you are not paying attention, your back will still bend.
Not only the spine that is suppressed by disease, but also some possibilities in the future.
When she just graduated, Li Qing didn't consider her condition when looking for a job. "I feel that she is still young and can survive." She became a host of goods, often working night shifts, and broadcasting live for several hours. At the end of September this year, the weather in Xi'an turned cold. At 1 a.m. one day, she felt that her legs were almost unable to walk when she got off night shift, and it hurts as soon as she exerted force. She didn't care at first, and went home to sleep for a while, and woke up with pain relief.
But in the next few days, the pain could not be dispelled. "I am still like nothing during the day. As soon as the sun sets, I start to feel pain. It's okay to sit, but when I stand up, it's like a needle pricking a bone." When I woke up in the morning, the sacroiliac joint began to hurt as soon as it exerted force, and it was difficult to even sit up from the bed. Her body began to get over it, and she gradually had the idea of changing jobs. "You may not be able to find it casually in the future, and you can't stay up late."
After resigning from a toy factory, Luo Jun went to a printing factory to apply for a job. During the interview, the other party told him that it was not suitable. He felt that it was because he walked deep and shallowly, and his image was not good when he bent over and hunched back. "They wouldn't just say that it was because of their physical reasons, and they just found a reason to get rid of people."
In 2020, Luo Jun got married and his son was born in the same year.
There are also concerns with joy. Before the child was born, Luo Jun was very worried about the hereditary nature of ankylosing spondylitis, and he was afraid that the child would have the same disease in the future. His family all came to persuade him, "The medical conditions are getting better now, and the cost of treatment is not as high as before. Even if he is sick, there is a way to treat it. Moreover, many diseases are hereditary now, such as , hypertension, , and there are many people who have this disease. If you persist in treatment, you can live a normal life. "
Someone suggested that Luo Jun have two children. If one of them gets sick, one more child will have more support. But Luo Jun is afraid, what if both children are sick. He finally decided to give birth to only one for both children.
Chen Lifeng was deeply impressed by a male patient. Five years ago, the first time he went to her clinic was the patient's mother. She said that her son was sick during college and the treatment was ineffective. Her body gradually bent to sixty or seventy degrees, and gradually became desperate and autistic. After graduation, he was unwilling to walk out of the room, had no job, no friends, and was unwilling to continue treatment.
"At that time, in order to persuade him to treat, we gave him psychological counseling to let him see successful cases among other patients. Now the treatment effect has exceeded my expectations, and the person has become sunny, with his waist half straight. "Chen Lifeng said.
Jiupai News reporter Wang Jiaqing
[revelation] Please contact the reporter WeChat: linghaojizhe
[source: Jiupai News]
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