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 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.
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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 couldn’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 my 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 catch the bugs and get 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 at what I know now, brings me a level of peace to finally understand. To finally know it wasn’t all in my head.” – Natalie H.
I was a kid, I was admitted to the hospital. All I remember was that the doctor suspected rheumatic fever. I got strep throat a lot. It was SO painful. Running was always HELL. I fatigued out so fast.
I was sick constantly as a youth. I was told that I just didn’t want to go to school. That I was being lazy or faking it. Now that I’ve been diagnosed, it all makes sense. 8th grade was a nightmare, I got mono then had to have my tonsils out. I miss most of the year. And since we lived rural no one would come Tutor me. So I had to repeat 8th grade.At that point we switched schools, by then I was 16, in an abusive relationship and it all continues in a horrible cycle from there.
I was constantly sick as a child. Hated PE as my fatigue was so bad. Woke up one day with excruciating pain to my right hip. Taken to the GP and sent to hospital. Ended up on traction with suspected hip dislocation. Even though the x rays couldn’t show a clear dislocation. On traction for 3 days. This happened 3 times during my childhood, 3 admissions to hospital and leg in traction!
At a very young age of 8 and to present day i had excruciating pain my mother would rub my legs at night with liniment until I went to sleep,there were times that my legs would go completely numb and i would fall with no feelings in my legs and lasted for hours and the doctors would tell my mother it was only growing pains,i was so scared when night time came because i knew what was coming
Since I was about 8, I would get the worst leg pain. I still remember crawling to my parents room crying. Mother would massage my legs, she tried everything and nothing worked. Back in the 50’s Fibromyalgia wasn’t even a diagnosis. My doctor said it was growing pains. As I got older I started getting Charlie horses in my legs, it felt like someone was cutting my legs/‘s off. I would scream and cry grab a cream to rub on my legs that didn’t work. One night I rubbed a Chinese oil then put the heating pad on and fell asleep which resulted in a second degree burn. I tried everything ??♀️ Also, I’ve been called a hypochondriac since I was little and as an adult. ?
Thank you for sharing.??
Thank you they told me the same thing when I was little. One big thing was school tris and I cried I didn’t want to go and after school.my mom would be outside looking for me and the she would see my clothes on the floor and I would be in bed. So tired but couldn’t sleep because of the pain. Yes heat and rubbing my legs my mom would do. I remember those red hot water bottles. They hurt so bad thank god for heating pad. Now I’m 68 almost ???? lost my husband of 46 yrs really more than that since I meant him at 14years old he was so kind , even when I asked him not to walk so fast when he was walking me home. He always said that people never seen me when I was so sick I was throwing up. So they would never know how sick I got, but he did. Iiss him so much, he was my strength. I’m giving up slowly… Just want to go with him. Please value anyone who gets you and doesn’t doubt your pain. Even being able to write things like this and knowing people get it. Love to you all. Enjoy the small moments and know when heaven comes you will jump and run and laugh and smile so don’t give up, better days will come they just take awhile ❤️????❣️
Same for me; when I stretch my legs I’m always fearing that I’ll get another cramping.
I was 5 years old and told exactly the same thing growing pains. Plus I could sleep at the drop of a hat. So I had fibromyalgia and chronic fatigue since childhood and I’m well into my 70’s now and just existing. Maureen
My arms would always fall asleep while holding it up at school to answer a question or ask to go to the bathroom And still putting my arms over my head makes them fall asleep so quickly i got shin splints badly while running and Charlie horses at night that woke me up crying and in extreme pain had tonsils removed at 9 had continuous tonsillitis from early age
I remember during my childhood I would always get sick with a cold or fever more than my siblings and cousins. I also remember my legs and back was always hurting which the doctor would tell my mom it was growing pains. I also remember having issues with severe stomach pains which was blamed on my cycles or the lack there of as a teenager. I would always tell my mom it was more but she would not believe me. I felt weird, awkward, and alone unfortunately.
I went swimming as a 14yr old to my highschool pool. Put on some flippers and did a couple of laps. Left at 7pm, showered and in bed at 8pm. Next thing I knew my granny was waking me up- do you know what time it is? 4pm the next day. I forgot to take my socks and slippers off. When I removed them, my toes were blue with bruises and outline of the flippers. I was told by gym teacher I was so out of shape and deconditioned and should be lifting weights daily.
I’m 65. And have suffered with fibromyalgia all my life it first started when my father of course broke my rib under my left breast when I was seven and I’ve had trouble ever since with all kinds of issues being a child of sexual molestation and also having to watch domestic violence the years that I was growing up around my father was horrible
I suffered terrible leg aches and pains at night as a child – especially after school sports. My mother would rub my legs for hours to try to dull the pains. Doctors only ever could say it was growing pains. The pains occurred through until my early twenties when I discovered a certain pain relief tablet which gave some relief. I’m now 65 and diagnosed with fibromyalgia about 5 years ago.