As a kid, I would lie awake at night crying because my knees ached so much I couldn’t stand it, and the muscles in my legs felt so painfully tight that even resting them on my soft sheets was unbearable. But after visiting countless doctors and enduring months of testing, I was told my legs and knees were in perfectly good shape. “It’s probably just growing pains,” the doctors would say. “Nothing to fuss about.”
If you have fibromyalgia, this may sound all too familiar. Many of those with fibro start experiencing signs and symptoms as early as childhood, but the lack of awareness about how fibro and other chronic pain conditions can affect children leads to many doctors brushing off the pain and symptoms a child may be experiencing. Too often it takes years (or even decades) before finding a doctor who really listens and is able to make an accurate diagnosis.
The medical community needs to stop dismissing children’s complaints and chalking their symptoms up to simple “growing pains.” So, to better understand what early signs of fibromyalgia can look like for children, we asked our Mighty community to share the fibro symptoms they experienced as children that turned out to be more than just “growing pains.” These symptoms need to be taken seriously.
Here’s what our community shared with us:
1. “Severe pain and cramps after P.E. I was always told ‘everyone aches after exercise’ so I grew up thinking everyone felt the same way I did.” – Kai M.
2. “I experienced extreme fatigue for my age. That was coupled with severe pain across my body, skin and bones. I was also extremely sensitive to pain that would normally barely bother a healthy person. When the other kids in my class were fine playing in P.E., I was mostly unable because my legs hurt like they had bruises across their entire surface. My hands would hurt randomly and my arms felt like I’d been punched in them.” – Mikki I.
3. “The fibro pressure points. I always had pain when people pressed on those.” – Brittany H.
4. “Restless legs that had me uncomfortable all through class, pain that kept me up at night shooting through my legs, light and sound sensitivities that were excruciating, and fatigue that had me trailing behind my friends for reasons ‘unknown.’” – Marissa E.
5. “The sun was so bright that I couldn’t open my eyes. Even indoors.” – Ekka N.
6. “My ankles always seemed to hurt. I would try out sports and loved the concept but the physical strain didn’t love my young ankles. It was always ‘you’re an old woman, Lex!’ And we all joked about it being growing pains. Depression came along at a very young age as well. Once I was diagnosed at 17, it all came together. I am 19 now and still get the ‘you’re too young to hurt this bad.’” – Alexis Mae G.
7. “Constant burning and gnawing sensations in my legs, and at times, my arms as well.” – Kyndra E.
8. “Aside from the standard fibro symptoms, big signs for me were: Unusual sensitivity to clothing materials, changes in the weather and weakness relating to physical exertion. I would struggle sitting cross-legged on the floor (which was required in lower schools) and playing outside with the other kids.” – Georgia D.
9. “Heat intolerance! I have always become irate if I get hot.” – Chelsea M.
10. “Fatigue. So much fatigue and I wouldn’t understand why. I would get pains in my fingers and legs that felt like I twisted them but I wasn’t even moving. My hands and feet would swell and be painful and I would have no idea why.” – Samantha M.
11. “Leg pain. People would tell me they were shin splints from cheerleading. I just nodded and agreed. But deep down, I just knew it was something else.” – Christina M. P.
12. “Not being able to sleep with weight of my right knee on left, feeling like my head was too heavy for my neck.” – Gwen K.
13. “A feeling somewhere between a foot cramp and a pulled muscle in the soles of my feet. My hip used to lock up or pop which was dismissed as growing pains or ‘one of those things.’ It’s only since being diagnosed at 30 that these things are starting to make sense.” – Sophie R.
14. “I had a lot of sore throats. Later I had tonsils removed. I have also been diagnosed with Epstein Barr.” – Paulette N.
15. “Fatigue, stomach pain which was put down to hormones or irritable bowel syndrome, aching muscles and joints. Always catching the bugs and getting them worse and longer than those around me. Constantly being asked if I was depressed by my doctor when I was just sick and tired of always feeling sick and tired.” – Julie M.
16. “I’d be laying flat on my back, and suddenly I couldn’t sit up or move. My whole lower back would be hurting, it’d scare me…” – Amber Y.
17. “All through my early teens I would get back pain so bad I would curl into the fetal position, everything would go white because the pain was so bad and I couldn’t even call for help.” – Jenny H.
18. “I had extreme muscle cramps in my lower legs. I chalked it up to my ballet lessons, but after 12 years of dance, it was something I’d never experienced before and should have known something was wrong. My family doctor gave me muscle relaxers and just told me to stretch more.” – Elyse B.
19. “Fatigue. It was much worse once I started my period. I missed a lot of school during those times.” – Vonda M.
20. “A tight squeezing feeling around my limbs that would make me feel lightheaded and like I was going to pass out. Doctors said it was just growing pains and I was being dramatic.” – Emma F.
21. “As a teenager I was required to take gym when I was in high school but simply jumping over obstacles or running easy around a track could result in severely torn quadriceps, hamstrings and debilitating shin splits. It was frustrating. Embarrassing. Worse was most instructors didn’t believe I was in the pain I was experiencing and thought I was faking it. I got yelled at and punished for trying to ‘weasel’ out of the class. Looking back with what I know now, it brings me a level of peace to finally understand. To finally know it wasn’t all in my head.” – Natalie H.