When looking at someone, they can seem “normal” based on their appearance.
When someone has a visible disability or injury, it is easier for an individual to notice and understand what’s wrong. However, when it comes to a disability or illness that lies beneath the surface, it’s harder for people to understand what the problem is since it isn’t immediately apparent to them. Although many people struggle with disabilities, there is one in particular that I live with on a day-to-day basis.
While growing up, I was diagnosed with multiple medical conditions. One I mainly struggle with is AMPS. AMPS is short for Amplified Musculoskeletal Pain Syndrome.
According to Children’s Hospital of Philadelphia, it is also known as Complex Regional Pain Syndrome (CRPS), Diffuse Amplified Pain, Intermittent Amplified Pain, and Localized Amplified Pain. It is a rare condition that causes extreme pain in the body. It will never go away, but it can be treated.
AMPS causes the body to work differently when reacting to pain. When areas in the body experience a painful event, it sends signals through the spinal cord and to the brain. However, unlike normal nervous systems, there is a short circuit in the process. The signals now cause the body to constrict the blood vessels in the area.
According to CHOP (Children’s Hospital of Philadelphia), “This constriction restricts blood flow and oxygen to muscles and bone and leads to an increase in waste products such as lactic acid. It is this lack of oxygen and acid build-up that causes pain.”
This new pain signal also goes across the abnormal short circuit in the spinal cord and causes a further decrease in blood flow, amplifying pain for affected individuals. The pain compounds through this continuous cycle, resulting in abnormally extreme pain.
The pain that I and many other people feel from this condition is 10 times worse than normal. While for many people, it’s a scale from 1-10, with AMPS it feels like a scale from 1-20.
Every day I’m in pain, some days worse than others, so I’m kind of used to it. I can tolerate a six on a pain scale. It would likely have to be worse than a 10 in order for me to cry. While everyone handles pain differently, living with AMPS has greatly changed my pain tolerance.
In relation to the pain, it can cause the slightest touches to be extremely painful. For example, getting hit by a soft frisbee wouldn’t be that painful for others. However, if a person with AMPS got hit with a frisbee, it could cause crippling pain. This also depends on how sensitive the area in the body is. The body can become so sensitive that even the slightest touches become unmanageable.
A few years back, I was in and out of the hospital from AMPS. Certain areas in my body were so sensitive, putting a sock on my foot hurt very badly. My legs would become extremely cold. I became immensely frustrated over time.
Nobody could tell me what was wrong, and there were so many possibilities for what was going on. When doctors asked what was wrong and I explained, I always felt like they thought I was lying or that I was crazy. I got mad at myself and the doctors because they couldn’t help me, and I wasn’t able to do anything to feel better.
I also got mad at my parents, and I was sick of everyone telling me they knew how I felt when they didn’t. I know they were just trying to help, though. I felt alone and that no one understood what I was going through.
I was eventually diagnosed and sent to Children’s Hospital of Pittsburgh, where, at the time, I was on crutches. I made some friends and slowly started to realize I wasn’t alone. That was not the end of it, though.
After the program, I started having more issues again. When physical therapy wasn’t working, I was sent to the Children’s Hospital of Philadelphia.
I learned more about my AMPS and was put into an intense therapy program. It was extremely hard to get through, but I knew it was the only way I was going to get better.
I made some amazing friends during my stays, and I learned I wasn’t alone. When I left, I did have some issues, but I knew much better how to deal with the pain. Some days are still a fight with myself just to get things done, but I cope the best I can.
I try to help and talk to other people who have been diagnosed with AMPS. I want them to know that they aren’t alone. It is going to be a struggle, but they are going to be able to get through it.
There are many questions that people have about AMPS, especially for those who are learning about it. To clarify: yes, it is real. There is no cure, but there are treatments. Anyone can get it, and although it is more common in children, it doesn’t just affect children. It is not contagious.
Amplified Musculoskeletal Pain Syndrome affects people in very different ways. This cannot be treated with pain medication. There is still a lot to learn about the condition, and more research is being done.
My experience with Amplified Musculoskeletal Pain Syndrome is unique, as is each case of AMPS around the world. With better understanding and more empathy for those affected, we can take steps toward progress in combating the difficulties of living with it.