When Everything Changed: Living with AMPS as a Teen
Hi, I am Rose, with Allonia Rose/The Soft Hearts Society™. I wanted to introduce myself and tell you my story.
My mom was very sick for over 3 years. Which was very hard for me because during this time I thought I was going to lose my only mom. My mother is very important and special to me. And I always thought during this time what I would do if I didn’t have a mother? Or how would I be able to go on without her here to see me grow up? I also stopped eating a lot of food since I had a lot of anxiety. I used to wear headphones downstairs since I thought my mom was throwing up. I often stayed upstairs. So, to try to make myself feel better from all of these thoughts and experiences. I started working out excessively. And stretching, which at the time I thought was really helping me.
And making my body feel better. But I still remember how I felt when it first started. The first day I started working out and stretching, I was in extreme pain, and I felt very weak and tired. But at the time, I thought it was normal, so I kept pushing through it anyway. And I got to the point where it was so unbearable. So I looked up whether it’s normal to have pain or weakness after stretching and working out. And when I started researching, and it wasn’t normal, I began to worry. I stopped stretching and working out during this time, and after that day, my pain has been here ever since.
Once the pain got very bad, I went to the ER to get an MRI and an X-ray. I was told that everything was fine and they couldn’t find anything wrong with me. Which is great and all, I was very glad to be healthy and strong, but I still wondered to myself why I am in pain..? So I waited a few days because I thought it was just an injury and expected it to go away over time. After that, weeks went by, and it never went away; it just kept going and going and going. I couldn’t understand why I was in pain and what was happening to me and my body.
I couldn’t walk, I couldn’t get out of bed, and I couldn’t even shower or make meals for myself. So my parents played a big role in this, and they took very good care of me and motivated me so much during this time. Which I’m very grateful for. I then started to go to PT to try to manage my pain, and I continued doing PT for over a year. They told me I needed to do extreme movement and work out to make it better. Since I was so desperate, I started doing them, and it never worked for me. Which made me feel very sad and alone. Since no one knew what I was going through and why I had pain. It has been very hard during this time and STILL very hard for me.
I have had days when I fall, and I can’t get up. My parents had to buy me a walker so I could walk around the house. I still limp a lot when I walk since I have a lot of pain and weakness. I have so many days when I can’t brush my teeth. And this makes me very sad because I really want to grow up with healthy teeth. But with my pain, I often think, is this even possible? My mother usually helps me with things like bathing. And helping me fix my meals. I ended up getting diagnosed with (AMPS) or Amplified Musculoskeletal Pain Syndrome. It is a condition that causes intense, persistent, or intermittent pain anywhere in the body. Currently, there isn’t a cure for Amplified Pain Syndrome. Which often makes me feel more alone. Medication also doesn’t help with this condition.
My family enrolled me in a high school. Which I thought would be great, but when I actually started going to the school, it wasn’t what I expected. I haven’t been to public school in years, so this was very new and very stressful for me. First, from my experience, it was very crowded, and it was so hard for me to get to all my classes on time. Since I was already going through pain, it didn’t make it any better. I was often late to all my classes, and one teacher told me, “You have to be here when the bell rings.” Which made me feel very bad about myself because I try my best to push through. And keep going with this condition. Teenagers kept bumping into me as they rushed to their classes, which made me think that during this time, it would be great to live a life where you don’t have to worry about living up to others' expectations.
I think it’s great to live a life where you don’t have to worry about getting excellent grades and living your life to the fullest. After this experience, my mother enrolled me in another school. And I got enrolled in another school. Which I was very happy about. But once I got into the school I was also very stressful for me. I was doing homework for over 10 hours. I woke up every day at 4 in the morning to get a head start on my homework. And by the end of the day, I still didn’t meet their expectations. I thought, let’s push on for another year. And I couldn’t do it anymore. I ended up joining 2 clubs, which were the only things I was looking forward to in school.
I even made my first friend. I am so grateful I got to meet somebody. And become friends with someone who understands me. I really want to get back into ballet. But maybe I can’t dance anymore. I often times feel like this condition limits me from a lot of things. And I wish I could do more. But I tell myself I can do this! And you never know until you try. Thank you to whoever this reached. And I hope you enjoyed hearing a bit about my story and what I’m going through right now. To whoever reads this, I wish you the best. You are amazing, strong, and loved. Never forget who you are.
Love,
Rose 🌹
