I suffered with AMPS for almost 2 years and no one really understood what was wrong with me. Especially me. I can’t tell you when it all started, because we really don’t know. But when I was in middle school, I fell down a flight of stairs carrying a plate of brownies and hurt my back. After that, nothing was really right with my knee again.
I had to give up Cross Country in middle school and tried to do it again in 9th grade, but I was in too much pain to run. In middle school I was also on the high school varsity Fencing team and it became difficult to fence because of my knee pain. The Cross Country coach was also a sports trainer and he helped me to understand that my knee didn’t track properly. I needed physical therapy to strengthen the muscles that supported my knee and hip so that I could stay active in a way that didn’t hurt my knee.
And it would work for a little while, and then the pain would come back. Then, toward the end of 9th grade, the pain came back and stayed. And it just got worse and worse. The pain wasn’t just joint pain and it wasn’t just in my right knee anymore. It was spreading to above the knee, around the knee and below the knee. It was behind the knee. And soon it started radiating down my right leg.
So, in the 12 months between the start of 9th and the start of 10th grade, I went to 3 orthopedists, completed 4 rounds of physical therapy with 5 different therapists, had 3 MRIs and a set of X-rays, underwent a nuclear bone scan, had a cortisone injection, and had more blood drawn from me that I could ever have imagined. And other than a small ACL tear that may have happened when I fell down the stairs or while I was trying to run hills after my back injury healed, everything came back negative. There was nothing wrong with me, they said.
Except I hurt every day. I iced every day, but it didn’t help. Doctors recommended Advil, Aleve and Tylenol. None of them really ever took the pain away. The cortisone shot helped, but it only lasted for 2 months and when it wore off, the pain was worse than it had been before.
I went to so many doctors and had so many test. And nothing worked. I had 7 lumbar sympathetic nerve blocks with sedation in the hospital (4 in September and 3 in March) where the doctors injected an anesthetic into my spine to try to calm my nerves. It didn’t really help, but they said I needed a series for them to be effective, so we kept going back. It was a 2-hour drive into the city at 6:00 AM, and the procedure and recovery took hours. Then it was 2 hours home again. The anesthesia made me nauseas and my back hurt for days. A few times I had a bad reaction to the anesthesia or the drugs they gave me in recovery. And one time they did a saphenous block and to this day I have no sensation in my right shin!
We just kept going from doctor to doctor to doctor. I was misdiagnosed a lot. We saw neurologists and rheumatologists after all the pain management treatments failed. And by luck we ended up hearing about CHOP and their Amplified Pain Clinic from one of the rheumatologists who happened to have done her residency there and knew of this doctor named Dr. Sherry who studied kids with unexplained pain like me.
Eventually, CHOP explained everything to me. They helped me to understand I have a nerve problem. It is called AMPS (Amplified Muscoloskeletal Pain Syndrome). My brain and my sympathetic nervous system were malfunctioning and causing me to feel pain. Regular people who have an injury slowly get better over time. In my case, my brain kept making the pain worse and worse. Basically my nerves were telling my body to feel pain all the time. Their website explains things very well:
I had to wait a few weeks before I could visit them, but in the meantime, my mom was able to make calls looking for physical therapists who were able to/willing to treat me. This way, when we got back home after visiting Philadelphia, I would be able to start treatment (unless they kept me at CHOP, but they ended up not doing that).
If you have experienced any of the problems I have explained, I hope you will go to the CHOP AMPS website and read about their experiences and doctors. Maybe I can save you the suffering I went through!
Scroll down to learn more.
Every time the doctors thought I had something, I was hopeful and also freaked out. These are some of the disorders, injuries and diseases I was tested for and DIDN’T have. But each of these problems has symptoms like the ones I was experiencing:
Every time I went to see a doctor, they asked me to rate my pain on the 0-10 pain scale. I never really knew how to explain how I felt. I hurt ALL the time. It never stopped hurting. Sometimes it was “stabbing” and sometimes it was “throbbing” and a lot of times it was kind of both. And I would get angry when people wanted me to explain it because all I knew was that
a) it was the worst pain I had ever felt in my life and
b) it never went away.
Putting a term on it seemed pointless to me but it seemed important for the doctors to know how it felt, so I tried. The worst was when I told doctors my pain was a 9 0r 10 and they didn’t see to believe me.
One physical therapist (I saw a total of 5) basically accused me of over-dramatizing my pain. He told my mom I was “overreacting” to the exercises and pain. He told me that I needed to learn the difference between being “in pain” and being “sore.” I will admit that I wanted to punch him in the face and see if he felt “pain” or “soreness!”
My mom found us a new physical therapist!
Swelling: My knee was swollen and eventually my lower leg began to swell too.
Redness: My painful knee and leg were more red than my other one.
Sensitivity to Touch: I learned ths is called Allodynia. At times, I couldn’t bear the feeling of the bedsheet against my knee so I would just lay there in shorts, flat on my back.
Decreased Range of Motion: My knee just didn’t want to bend after a while.
Spreading Pain: The pain started in my knee and eventually spread so that I felt pain from my ankle to my thigh.
Anxiety: I had this feeling like the pain would never end and I would be like this forever.
Insomnia: The pain was so strong that it was impossible to sleep some nights. In fact, it was worse at night because there was nothing else to concentrate on.
School was a real problem for me. I would try to go as often as I could, but sometimes the pain was just unbearable. My school is a ¼-mile from one end to the other and even with a 5-minute pass to leave class early, it was just too hard for me to walk.
Bearing weight on my knee was the most painful thing ever. I had access to the elevator at school and sometimes I used crutches, for a few days I tried a cane. And after a while, I was stuck in a wheelchair.
To be honest, that sucked a lot. Kids didn’t understand what was wrong with me because some days were better than others and some days were impossible. Even my friends started to question why I couldn’t walk. One girl I have known since elementary school actually looked up one of my diagnoses on her phone and mockingly told me that the internet didn’t say that people with patellar femoral needed crutches! It really hurt to know that the people around me thought I was exaggerating or making up my pain for attention. All I wanted was to be able to be active and not hurt, and they thought I was making it up?
So I stopped talking about it with people. But the accusations were still there. If I missed school but was able to show up for a social activity, people would mock me for being lazy or a faker. Some of them were just kidding with me, I knew. But it was still hard to take. And some people were just straight up mean.
The pain also caused me to have insomnia, so mornings were terrible. I was exhausted and nauseous and sometimes had a bad headache. My first period class started at 7:30 and that was really difficult. So some days I just stayed home and then I would miss work. Some of my teachers didn’t understand why a knee “injury” kept me from being able to do homework. So many people didn’t understand and my grades really suffered. This only made me more anxious.
I tried to see a sleep therapist and she really didn’t understand what I was experiencing at all. She told me that pain was something I had to learn to live with.
CHOP was so great for me because they provided information to share with my teachers and other people. Not enough people know what AMPS is, or that it even exists. So my mom and I were able to educate my teachers and doctors. We had to educate my physical therapist (he liked Dr. Sherry’s video), my school nurse (she liked communicating with CHOP’s educational coordinator), my teachers (my mom sent them the basic AMPS explanation and drawings from the CHOP website and Dr. Sherry wrote them a short note explaining my condition and what I would be doing to heal) and even my psychologist (eventually we found a good one...that was one of CHOP’s requirements) and she helped me make a plan to deal with my pain in school.
We worked with my school nurse, school psychologist and guidance counselor to get a 504 accommodations plan for me so I could stretch and move around during long tests. It made a big difference for me.
It was important for me to get back to school and have a routine. I missed my friends (though I didn’t miss homework!) and was able to get back on track before the school year ended.
Working through an AMPS flare up sucks. But at the same time, it feels good to DO something and not just lay around and be in pain.
In the beginning, after I got home from my visit with the CHOP AMPS team, I went to PT 4 times a week and the other 3 times a week I had to do exercises at home. And they hurt. But after a week, they hurt A LOT less. I hated going to PT and I hated when my mom bugged me to do my exercises at home. But it worked!
Basically, I had to re-teach my body and brain to work together better. My brain was telling my knee and leg, “Be in pain! Be in pain!” all the time. So I had to work out the parts that hurt to show my body, “See this doesn’t really hurt! There’s nothing wrong with your knee!” And pretty quickly, my body understood and the pain started to go away.
It was a little harder when the pain came back as migraine headaches because I was sensitive to light and sound. I was nauseous and dizzy and even lost my vision a few times. Some of the headaches lasted several days without stopping. But I had to force myself to do the things that hurt. I had to get up and move around. I massaged my scalp with a head massager. I put on music and cleaned my room. I even had to force myself to eat when I was nauseous. But again, it worked!
Since then I went from going to school in a wheelchair, to coaching Rec Camp at my school and running bases and playing tennis for hours each day. I went from lying in my bed in pain to winning the school election and now I will be Vice President of my senior class. I went from not being able to handle light to deciding I want to major in computer science in college. And just recently, I attended a 10-band major concert with thousands of people at a huge venue and the sound did not send me home with a migraine!