I’m Shiloh, I’m Seventeen years old. I started having knee pain around August of 2024, and my mom and friends thought it was growing pains. I knew something was wrong. The pain traveled to my elbows, wrists, and ankles. After a while, the pain started to go throughout my legs and some days I couldn’t walk. It felt like I ran ten miles (I wish I did, imagine how buff I’d be). We finally went to the doctor, we did blood work (which I’m used to since I get chronic migraines and it took years to figure out what was wrong). The doctor ended up sending me to a rheumatologist because my ANA came back as 320. With my ANA being that high, they assumed it was rheumatoid arthritis, but I got MORE bloodwork done and an x-ray. One time, they did ten vials and I almost fainted, which they sent to California for testing. This test said I didn’t have ANY autoimmune disease at all, nor did I have allergies. However, with the symptoms I had and ruling everything out, my doctor was pretty certain I had Fibromyalgia! It’s always nice when you get answers, I just wish there were easier ways to treat it. I also am not used to being stared at when using my cane or when someone is pushing me in my wheelchair, it feels different. It’s hard to get out of bed sometimes, and my legs are noticeably skinnier from how little walking I’ve been doing. It makes me sad I can’t do things I love anymore, not only due to the pain, but the financial burden it had on my family. I love theatre and singing, I want to do that for the rest of my life, I’m just scared my body won’t want that. My friend asked me once “what does it feel like” and the best answer I could give was that it felt like I ran a mile after taking a sedative. I also said it feels like I’m rotting from the inside because I’m in pain, but I’m too tired to do anything about it. Like a tree, when trees rot, they can’t do anything. Maybe that’s a good thing too, because trees also grow. I’ve been told by so many people that they would never be able to live through what I do and they say I’m a warrior, and I’ve always found that hard to believe because I feel lazy. Even with this pain, I’m still a good friend, actress, singer, sister, daughter, student, classmate, and more. It doesn’t stop me, so I asked my mom today “I want to start advocating, not just for fibromyalgia, but for other things too”. And here we are, this website! Thank you for listening to my story, and thank you for allowing others to share theirs too!
The NFA would like to thank Shiloh for her letter! We receive so many letters from people saying they feel lazy, or their family accuses them of being lazy! Please watch the following video provided by a specialist in pain treatment. We think it will help many of you feel better about yourselves.
Dr. Eddie O’Connor
