She was a healthy, active girl – "and then 'BOOM.' The pain started. At the beginning it was just annoying, but then the pain became paralyzing. We went to a doctor, then to another doctor, then to three more doctors, but nobody saw anything and they all said that it would pass." Lior Amir (18) from Ma'ale Adumim was diagnosed with Complex Regional Pain Syndrome and got to the point where she could not function. Today, after treatment in ALYN Hospital, she has returned to her former self.
Personal Editorial | Translated from the Hebrew article on ynet.co.il - 23 August 2023
It happened on the holiday of Purim when I was in 10th grade, about three years ago. I woke up and I couldn't move my legs. Imagine: waking up and half your body doesn’t respond. Actually, I wish it was that it didn’t respond– in reality, half my body was burning in pain and also didn’t respond. I screamed to my mother, I cried to my father, my brain screamed "enough!" my life was over. What happened here? Why? I wished that someone would wake me up from this nightmare, that someone would end this pain.
It all began a year before. I was in 9th grade, I've been dancing since I was in fourth grade, I completed a paramedics course in order to volunteer with MDA (Magen David Adom, the Israeli Red Cross); I was a girl who lives and loves life. Then – BOOM. The pain started. At the beginning, it was just annoying, but then the pain became paralyzing. We went to a doctor, then to another doctor, then to three more doctors, but nobody saw anything and they all said that it would pass."
After a year of suffering and uncertainty, the pain spread throughout my entire body – my hands, legs, back, neck – and my functioning continued to deteriorate. Sometimes I would go to the hospital just so I could get a morphine IV in the hope of some pain relief, which was never enough.
People began to raise eyebrows. How does this make sense? There is no visible cause. They thought that maybe I was crazy, maybe I was making it up, maybe I just wanted attention. The truth is that if I were seeing myself from the outside, maybe I also wouldn't believe it. I wouldn't believe that if I was lightly touched – a hand was placed on me, even accidentally – that I would be paralyzed from pain.
Or maybe I really was crazy?
On the one hand, relief. On the other hand, there is no cure.
And so, on that same horrible Purim morning, I woke up with terrible pain in my legs and could not move them.
I went to the emergency room and they admitted me immediately. They ran a million tests and many doctors examined me, but nobody could understand what happened. And me? I suffered. I was in real hellish agony. If I wanted to sit down? Agony. If I wanted to move from the bed into the wheelchair? Screams. Shower? Please, no, everything hurts so much.
Then, two months after I woke up with half a body, a year and a half after the pain started, I came to the Director of the Pediatric Department at Sheba Hospital, who introduced me to a pair of words that were unfamiliar to me, and have since changed my life: pain syndrome. The second he said this, I knew it was the right diagnosis. Pain. He continued to explain to me that, essentially, my brain and nervous system had teamed up against me and started to send pain to my legs. They paralyzed them.
On one hand: relief, because there is an explanation. On the other hand: there is no cure. Just pain. No treatment. Pain.
Complex Regional Pain Syndrome.
How did the doctor explain it? Pain that is out of proportion that no pill or pain reliever can counteract. The brain interprets everything as pain, even a small touch to the body. In a day, this syndrome turned me from a dancer who performs, competes and teaches, to someone who is completely dependent on other people and cannot do even the simplest of things, like getting dressed, showering and even eating. Each small action feels like an eternity of agony. Pain.
Luckily, ALYN Hospital: Pediatric and Adolescent Rehabilitation Center heard about me. The Director of the General Rehabilitation Department, Dr. Emmanuel Kornitzer, came especially to Shaare Tzedek in order to examine me and he made sure to find me a place. "A girl your age shouldn’t suffer like this without a solution," he said.
Lior during the COVID Pandemic. "Three times a week I came to ALYN in a wheelchair in order to fight for my independence and the ability to walk." (Personal photo)
I started rehabilitation as a day patient. Three times a week I came to ALYN in a wheelchair in order to fight for my independence and the ability to walk. After eight months of physiotherapy and occupational therapy treatments, I improved and moved forward, but it wasn't enough. I was afraid that they would tell me, 'enough, you cannot improve anymore,' but at ALYN, they didn’t give up on me.
After nine months at ALYN Hospital (as a day patient), the director of the department called me in to talk to me about my progress. He told me that it was not satisfactory and that it was decided that I would need a more intensive framework that included being admitted full time as an inpatient – but on the condition that I would be alone, without my parents who didn’t leave me for a minute. Just me and my rehabilitation.
At first, I said there was no chance. When I calmed down, I thought about it again and I understood that if this is what will help me return to myself, it does not matter how hard it will be – I will do it. A week later, I was admitted to the department. I'm not going to lie, it was a big shock to be here on my own in the department after being dependent on my parents for so long. Additionally, the framework of my treatments was very intense and took a lot of my energy. I was exhausted. Slowly, I digested the situation, I began getting used to it and I told myself that I would make the best of it.
The first month ended and I understood that I would not be released any time soon, but I was improving, and in ALYN they promised that they would be with me and be there for me until I could stand on my own two feet. I succeeded in standing, and then in walking with two crutches, then one crutch, and then I was able to walk without crutches at all. I left the Hospital on my own two feet.
No syndrome and no pain, but not at my peak functionality. I needed to rest every so often. I couldn't dream of dancing. Annual hikes (with my school) didn’t appeal to me. But then, they suggested I join the 'Bold Trekkers' group from ALYN – a group that meets up each week for short hikes. I laughed. Me? Hike? I can barely walk to the corner store, so a hike? But ALYN, being ALYN, insisted that I try.
It was difficult and exhausting, but I succeeded. I completed a trail. My doctors who first saw me – when they say me after three months of hiking, they couldn't believe it. 'Who is walking like this?' they asked. 'Is that you?' I told them that this is the 'ALYN syndrome.' It causes the brain to believe in its own abilities!
And then, because of that same ALYN syndrome and the Bold Trekkers group, I am now walking a lot – almost every evening – and I also do Pilates exercises. And do you remember the paramedics course that I did? This week I started going out on shifts. Soon I will also volunteer in the IDF.
Next week I am going on the annual overnight hike with the Bold Trekkers to make up for the three years that I stayed in my house. I will go with 10 members of the group that also completed their rehabilitation in ALYN Hospital. We will hike, climb and sleep outdoors. And climb more. Because we can. Because they did not give up on us, and we will not give up on ourselves.
What is Complex Regional Pain Syndrome?
Dr. Maurit Beeri, Director General of ALYN Hospital and a pediatrician by training, explains about Complex Regional Pain Syndrome (CRPS), from which Lior suffered: "Pain is an unpleasant feeling that is often experienced as a reaction to a harmful external stimulus. It is also an important mechanism that alerts us to possible danger such as muscle strain, blow, burn, fracture, etc. Dedicated nerve fibers transmit the sensation to our central nervous system, where we experience the distress, the severity of which usually varies according to the intensity of the injury.
A pain syndrome exists when the nervous system experiences pain that is not directly related to an obvious external injury. A cycle of nervous overreaction to relatively minor damage is often described, which instead of passing and healing, continues to intensify. Sometimes it is a specific limb, sometimes in large areas. The pain can cause an inability to move up to paralysis, and can be accompanied by swelling, a change in color and more.
Painkillers do not ease the pain. Any movement causes pain that has no relief and no end, and the patient can reach a point where he stops moving the limb, stops walking or does not get out of bed at all. The lack of activity causes damage to everyday life, further loss of mobility due to lack of muscle use, depression and more.
It is difficult to diagnose a pain syndrome since there are no objective indicators in laboratory tests or x-ray imaging. The diagnosis is made after other causes have been ruled out. Patients often experience a lack of trust and lack of support both at home and in the medical system due to the lack of a clear finding for the cause of the pain. The treatment is prolonged, intense and demands physical and mental rehabilitation with the aim of returning the patient to regular activities while dealing with the pain. The earlier the treatment starts, the better and more effective the treatment plan will be.
In recent years, we are encountering more and more teenagers with pain syndromes, and the reason for this is not clear. Studies show that in older people, the injury can last a lifetime, but with teenagers we have more successes in treatment, rehabilitation and return to the cycle of normal functioning. Lior is a good example of this."