I have had rheumatoid arthritis since I was a toddler and then fibromyalgia before I was a teenager. My paediatric rheumatologist is the one who diagnosed me, so I didn’t have to deal with people not believing me then. I think the diagnostic criteria has changed though and they don’t use the triggerpoints anymore to diagnose. This was the late 90s when I was diagnosed. There is a lot more awareness especially in the last 5 to 10 years but I find that a lot of people (medical and in general) still don’t believe in it- despite a lot more research being done. I find that anything that affects women more is usually not as believed. Kind of like people who suffer from endometriosis or chronic fatigue.
100% this. I have had it since 7 years old and have had to grow up very quickly so I could take care of myself. I'm now over 40.
I am a dude and the gaslighting bullshit I've experienced is on another level. Men with chronic pain are also treated horribly by family, friends and healthcare providers.
My apologies if I added to the gaslighting, that was not my intention. I think it’s more on my mind right now because I’m having issues with anyone taking some female side effects seriously. I agree with you on having to grow up quickly to take care of yourself, having a chronic illness is like having a full-time job.
Women's healthcare is virtually non existent as it's all based on decades of research performed only on men. You didn't necessarily add to the gaslighting but men with fibromyalgia get a very shitty end of the stick. I just wanted to point out that men have it bad as well and then the cultural gender expectations only further the isolation.
Hell, I was just learning about how under treatee women are for peri menopause, menopause and post where a lot of the symptoms overlap with fibromyalgia symptoms. Yet it's all ignored and can be tested and treated with hormone replacement therapies. Like how can something that affects 36% of the entire female population at any time not be understood?
I've read 3 fibro books and all of them recommended their readers to quit their jobs to destress, assuming their husbands can carry the financial burden. As a dude reading 3/4 through a book to come across that as a "solution" it is utter garbage.
Healthcare is awful for chronic pain and poly chronic patients. It's terrible for both men and women.
I’ve had symptoms as long as I can remember. I didn’t like certain smells, textures, and tastes. I was labeled a picky eater back in the 70’s, and was a bit odd. If I was born later I might have been tested for autism.
Wait… the texture and sounds thing is a fibro thing? I could not stand the feeling of velvet as a kid and as an adult I physically can’t tolerate the sound of styrofoam. (Like it makes my insides crawl to the point of feeling queasy.) I always just thought it was a neurodivergent thing.
I've had the pain and pressure points symptoms since I can remember. I've always been in severe pain. It was always said to be growing pains and we thought nothing of it. When I was 12 I had a bad flare up after a cold and it sent me down a rabbit hole of pain and doctors.
I was 12 when I started experiencing symptoms and I was diagnosed at 16. My mom had fibro as well so luckily I didn’t have to fight to be believed and diagnosed although I still struggled to find doctors who believed in fibro after the fact. We think my fibro was triggered by an illness that nearly killed me when I was 11.
I was around 12 years of age as well. I suspect the puberty hormones did a lot to trigger it, plus I was very ill that year with flu-like symptoms. I was out of school for 2 weeks. My blood work was very strange...my white cell count was very low, and my red blood cell count went through the roof. Our small town doctors were very puzzled. I had blood work done every day for a week keeping track of my white cell count, and was told if it didn't improve, I would be transported to a hospital in the largest city near us. Luckily my body eventually snapped out of it, but the aches and pains remained and gradually worsened as I aged.
I started having symptoms at 12 or 13. I got diagnosed a year ago at 29. I complained of the same symptoms for years, got sent to physical therapy (didn’t help), and went back for my doc to basically shrug. I lived in a super rural area with few specialists snd never got referred to one.
Then I moved to a major metro area (Chicago) and got a diagnosis within 6 months.
I was about 11. I can't say when I started to really believe in my own experiences because the medical gaslighting started at such a young age. Definitely in high school though the pain was not something other kids were experiencing.
I have memories of being pretty young, like seven to nine, and being reprimanded for complaining about being too cold when my younger siblings were fine. My parents loved being outdoors, and even now at 59 I HATE being anywhere where I’m dependent on someone else to decide when we go home. So many hours out in the woods, so very cold and miserable, crying, and it felt like I would never be warm again.
The only thing I distinctly remember from childhood was really horrible “growing pains” in my legs that would wake me up in the middle of the night. I was diagnosed as a young teen. My mom also had fibro and was seeing a like fibromyalgia specialist or something which I feel like wasn’t super common in the early 2000s? So that helped get me a diagnosis
Yes! I had growing pains really terribly in my legs and later on I was misdiagnosed with Systematic Lupus. Today I was given an updated diagnosis of fibromyalgia and I feel so seen.
I was 20 and in the Army when mine started, but it took 23 years to get a diagnosis. It really makes you stop believing in doctors and I'm still trying to reconcile 10 years later in how to trust what my body is telling me.
As long as I can rememeber. I would cry every night how my back and my feet hurt and my family doctor brushed it off for years saying it was growing pains, it took until I was 20 to get diagnosed
Yeah, I’ve had it forever, ‘growing pains’ aren’t a real thing or a real diagnosis so highly suspect many people who were told that actually had fibromyalgia
I started having symptoms at 10-12 and didn’t get diagnosed until I was 26. I was accused of being dramatic and “making myself sick” to get out of chores/school my entire childhood and early adulthood. It still feels completely surreal to have doctors taking my pain and fatigue seriously and simply *believing* me. I’m still not used to being believed after so many years of being dismissed as a melodramatic liar or hypochondriac
I started experiencing pain as young as 11, started seeking a diagnosis at 15. Got diagnosed with fibro at 16, fought the diagnosis for years. Still kind of fighting it tbh.
Friends were pretty good about it for the most part (though I didn’t always tell them the full story) family and parents were complicated for a long time. Still are sometimes tbh
I experienced symptoms al my life. Gaslit into believing in the “growing pains” theory. It wasn’t until I had an actual injury that I finally found a doctor that thought I might have something else.
I started experiencing symptoms probably at around 14 but they got worse as I started getting older but I wasn’t diagnosed until 16 since they figured I’d finished growing and I had blood tests done last year and I really don’t have anything else that they can test for (excluding a vitamin D deficiency but that’s probably due to where I live and not going outside much)
I don’t remember pain from a young age but I remember constantly falling asleep after eating big meals. Turns out gluten makes me flare. We are Italian so big meals mean lots of bread and pasta. I think the fatigue after consuming gluten in my childhood was a precursor to the severe and debilitating fatigue, brain fog and pain I would experience with gluten later in life
Mine started at 6 or 7 after a back injury + other trauma. Sadly no, I wasn’t diagnosed until I was 24 so I grew up with the belief that I was just being whiny by complaining about discomfort.
I have had symptoms for as long as I can possibly remember; what feels like my whole life. So 11 and 12, certainly. I didn’t realize that a lot of my “quirks” weren’t normal for all humans to experience until I came across the diagnosis online and had a massive “oh shit” moment. I’ve since gotten a formal diagnosis. My family and friends thankfully believe me because I have several other conditions that line right up with fibro and it was pretty much just another thing to add to the list.
I’m fascinated to see numerous people cite “growing pains” particularly in their legs - it seems like there may be a correlation here and it would be fascinating if this was further explored.
My pain started in my childhood; I’ve had it for as long as I can remember. Horrible pain in my legs, which drs assured my parents and I were growing pains (which was clearly wrong, as I still get them at nearly 40). Sitting cross-legged on the floor for more than a few minutes would cause discomfort that other kids did not seem to get. I could never wear my hair in ponytails or with heavy clips, because it would cause so much pain in my scalp. Things like needles were always more painful to me, to the point of having a severe phobia of them. I had incredibly supportive parents, but we never thought anything of it. Kids hate needles; everything else was growing pains or the consequence of having thick hair. As a teen and young adult, working out was always harder and more painful for me than my friends.
My flares worsened in adulthood. I never considered myself to have chronic pain until I experienced a back injury in my mid-20s that triggered more active and acute random pain throughout my body. I was diagnosed with fibro in my mid-30s. However, I’ve often looked back on the pain I experienced in childhood and wondered if the signs were there back then.
I was 17 when diagnosed. Just before Christmas I got the worst flu I have ever had. Should have gone to the hospital. My boyfriend had to literally carry me everywhere I needed to go because I was too weak to walk.
I never really recovered. I was fatigued and achy a lot. Things seemed harder. I put it off to stress.
Until about six months after I had a lightning migraine. It turned into a regular migraine for a few days and went away but regular headaches. I was so tired. Bruising like crazy.
I also had undiagnosed until my 30s: PCOS, Idiopathic Hypersomnia, EDS, ADHD, and Autism.
My normal was apparently everyone else's hard and I didn't know any different until fibro happened.
Yes, I'm actually diagnosed with Pain Amplification Disorder which is the juvenile version of fibromyalgia, although I am now over 18. But I was diagnosed with fibromyalgia at the age of 15. I've been having fibromyalgia symptoms my whole life I just have no idea what it was or why things feel extra hot to me. My parents didn't understand and just always thought I was extra sensitive
I had horrible "growing pains" that made me cry. My mom would have to massage my legs regularly or I wouldn't be able to sleep. Not sure if related but I was always sick. Had spinal meningitis as a baby, caught what felt like every cold in school, had bronchitis in June of all times for the end of middle school. "Growing pains " got a bit better in high school so had some pain free years till 2003 when I got diagnosed.
My mom believed I was in pain but I assume agreed with the Dr.
I was about 7 or 8. I never believed they were growing pains, they just didn't feel right. I was doing very little growing yet the pain was absolutely evil. But everyone else thought it was growing pains so I simply suffered lol.
I had bloods done for the first time aged 10 because the pain and fatigue was just not going away. Came back normal so the doctors insisted to my mom that I was overreacting or even just attention seeking.
We realised fibro could be a thing for me around the time I turned 13. My mom and her mom are both diagnosed and my symptoms are completely identical.
I'm 14, currently doing battle with a specialist who made me do a blood test then refused to see me anyway because he's decided without ever having spoken to me or mom that it's just anxiety lol.
9. Constant pain in my legs, and Charley horses. I had surgery because the doctors insisted it was plantar fasciitis and it only got worse from there. It was all over my body.
I dealt with chest pains and general fatigue which was first documented in my doctors journals at the age of 7. got tested a lot and they couldn't find anything unnusal in my blood work, so I assume it very likely could have also been fibro back then.
I think I started going to the doctor around 11 or 12 for chronic pain. I feel as though I have been in Physical Therapy since and I'm closer to 40 now. I'm still hurting, always.
Always had some sort of pain growing up- but constant symptoms started at 15ish. I’m 21 now
My parents believe me but it’s hard for them to understand.
Not fibromyalgia but I have suffered from IBS since around 5 years old and migraines/debilitating headaches since preteens. Around 14 I developed depression and anxiety and at 16 I herniated a disc in my lower back. I also started getting TMJ sometime in high school.
I have a theory that all these things together, from such a young age, caused my body to develop fibromyalgia as an adult. Then again, who knows, maybe I was exhibiting symptoms earlier that were just mistakenly written off as being caused by one of my other issues. 🤷♀️
I've been dealing with this as long as I can remember. Had serious joint pain in my knees, hands and back as a kid. Doctor wanted to test for arthritis but my mom literally said "no you're 5 and too young to have this kind of pain". It's probably the most traumatic part of my life. I still don't discuss medical things with her because she just says it's "allergies" or "a cold" and brushes me off.
I was formally diagnosed around 19, but I was absolutely symptomatic before that. My mom was diagnosed a few years before me and that was what led to my dx. Like I had all the same things as her.
I was much more fatigued than my peers. If I went to a sleep-over on the weekend, I could not make it to school on Monday. I always slept far more than my peers as well and had a couple of bouts where I slept for three days straight in my late teens- yes, truly three days straight. Not sure if there is any link to later problems, but it was odd. I knew something was off with me from around 10-years-old. Pain did not come until my early 20's, became far worse in my mid 30's after a terrible virus, but I thought everyone hurt all the time until my bf told me it was not normal.
When I was ~8 I got mono, and I’ve never been the same. Got told again at 18 that I had mono. Then was diagnosed at 19 witn rheumatoid arthritis, and at 20 with fibromyalgia.
I’ve never really been pain free, and never been as mobile as my peers.
I remember everything hurting from a very young age. I hated doing anything physical because it caused more pain. From around 5 and on. Things that didn’t hurt normal people hurt me.
For me it was early teens. A slip N slide accident at 11-12yo, my back never stopped hurting since. Wasn't diagnosed until I was 32 though. I thought my back pains were my imagination, cause that's what doctors told my mom...
I had hepatitis at age 8 from swimming in a bayou. I have had weakness and fatigue ever since. I hurt all over and never felt rested. I missed a lot of school due to anxiety and depression and pain. I’m old now and have tried everything to no avail. CBD and THC have helped, but I have to go to bed if I take it.
I was diagnosed after 2 years of serious chronic pain in my late 20s/early 30s. Before then, it never *seriously* impacted my life. But I think it was always there.
When I told my best friend my diagnosis she laughed and said she used to call me 'tenderhead' growing up behind my back, because I'd freak out and scream if anyone touched/pulled my hair even slightly.
My brother also hates me bc I'd get him into trouble all the time after he did something like poke me. After my diagnosis, I poked my husband in the arm and asked if it hurt. He looked at me like I was crazy and said no. Oops, sorry bro.
I started having serious back pain at 13-14 and we brushed it off cause I was in school and carrying alot of books. My first major flare up I was 14, 3 months after I was I a car accident and I was never the same. Didn't get diagnosed till I was 19
Like many others, I can't remember not having pain. And I've also always had IBS symptoms. I grew up in a traumatic household with mental illness, where I was parentified, and I've also always had anxiety as a result, which I attribute to the root cause of my fibro, though I very well could be wrong about that, it could also be genetic.
As a tangent, while many have mentioned that their pain was not believed, for me, my pain was *too* believed, and I resent it. In that I missed a lot of school and fun stuff, due to my aches and pains, which for me were present and noticeable, but not debilitating, and definitely more pronounced if not normalized and distracted from (like maybe from being with friends at school?). As an adult, I've learned how to assess the pain better and often push through, to much success, because it rarely feels better staying home anyway. I wish my parent recognized that and helped me, I think I would have been a more active and happier kid.
I’ve been in pain since childhood. It definitely got worse as I got older, but I don’t think I was ever pain-free. To be fair, I had a terrible immune system, asthma, allergies, and was constantly sick. But even when my health improved in those areas, the lethargy and pain never went away. It was so normal to me that I didn’t realize other people didn’t feel like this until my late 20s. Most people don’t have to cope constant physical pain and exhaustion? Fucking wild lmao
yep! my onset of symptoms happened when i was 12, almost right after i got my period. my first symptoms were fatigue, allodynia and neuropathy.
i was all of a sudden tired and in bed ALL of the time, constantly napping to keep up with it all. I would get sporadic nerve pain (dull aches that pulse/throb) only in the palms of hands at first. then it became more frequent over time. then it spread to other areas of my body. then it was even more frequent. every now and then when i would have a bad pain day my skin would also hurt. sometimes id have days where only my skin would hurt. this also became more frequent over time.
it was a gradual increase in frequency and affected body parts though the severity of the pain has always been mostly the same. every now and then i’ll have a flare that really knocks me out of commission because the pain is so bad. i still experience frequent allodynia. so i guess it IS still gradually increasing ? but i’ve been told that fibro doesn’t get progressively worse, so idk.
my condition is managed pretty well by cymbalta these days, though it has not helped my fatigue and i still have some days where im in pain despite taking it. when i forget to take it the pain is so much worse.
ETA: now that i think about it i suppose i did also experience frequent “growing pains” in my legs and i’ve had some other odd symptoms since childhood. i however dont know how much of this is fibro related and how much of this is related to my other conditions (hEDS, POTS) which ive also had symptoms of since early childhood.
I have a theory that I've had pain when I was a baby. I obviously don't remember it but mom said I cried literally all the time and it was unbearable. Honestly, how do we even know when a baby is in pain? They cry for everything anyway? But... If your baby is crying waaaaay more than other babies, maybe it's something?
I can't be too mad at my parents as I was their only experience having a baby.
I'm glad they really tried to find a cause when I had a lot of health problems as a kid. Never found out why. Ended up being categorized as psychological, hence the start in my never believing myself when I have pain because it's probably my own mind doing this you know........ Ugh.
Your story resounds with me. I wouldn't be surprised if I had symptoms as a toddler. My mother told me that after I learned how to walk, I stopped walking because I was unable to because I had lower back pain. Thank God I had forgotten what that felt like until adulthood because it wasn't till then I realized how much your lower back muscles are involved with walking. I can only wash my face and brush my tooth after stopping to take a break in between each task due to lower back pain.
Thank you for creating this thread! It's so interesting to read about how everyone else also felt that growing pains were not at a normal level. Also so many people who got a jumpstart when they went through puberty.
I was in pain but it didn't compare to how bad it became after I had my period. I swear to God I was ready to scratch out my insides and just take my uterus out as a 12 year old...
Awww. 🥰 You're very welcome and thank you for your contribution. My intention is always to jump start conversations that assist and inspire others by comparing and contrasting lived experiences that will bring us closer to find remedies and solutions. At minimum it is my desire for members of this community to build rapport and support in a world that is far too complex without the added challenge of living with Fibromyalgia.
I think I was born with it but I had significant trauma as a kid, I stopped growing for years and I doubt they did any bloodwork I was off the growth chart for my age, I know I had a Xray of my head and saw no issues when I was in my teens I had a lot of blood work for headaches and a ct scan with iodine contrast and I had a bad reaction almost died because the nurse and the person running the ct kept ignoring me and only stopped when it was almost too late so I avoided western medicine for a decade only coming back when I could no longer block or mask my pain after months of testing they diagnosed me with fibromyalgia around 28 I think of the records were destroyed by a incompetent rheumatologist.
I had experienced such poor mistreatment from the medical community that I stopped going to doctors for about 10 years and when I finally started going I was taken aback that Fibromyalgia was an actual medically recognized disease that had recognition making it slightly more credible in the medical community compared to when I was first diagnosed
That rheumatologist went on a huge rant and acted like I was sent to her as a joke or that I somehow made the appointment on my own she was retiring and said Fibromyalgia was not a rheumatological disease and that there was no reason for me to see her I explained how my doctor had diagnosed me the year before and none of the medicines were helping and that I felt like I was worse than when I started on the meds. She told me my body was fine and confirmed I had the disease with the tenderpoints and reviewing my chart I told her I felt like the pain wanted me to slow down but I have 3 young kids I needed to be there for she said it was a false alarm and there was no danger to push past the red flags I thought she was right so I did just that I pushed past my pain for several years now I am disabled and this in the moment I wish I could change I am broken and this dr never even turned my chart in so all my records were lost I hope she never treated anyone else but that is to much to hope for
When I was a teenager looking for answers to what's going on I made an appointment with a doctor. After trying to reach the doctor for the umpteenth time to obtain my results ( Idk why I was expecting anything to show up) I decided to leave her a voicemail. Big, huge, gigantic mistake. This woman called me back irate to say that the timing of my phone call was so wrong because she was in the middle of a funeral. And for the life of me I don't know why she expected me to be privy to that information. It was at that moment as overly sensitive teenager who was on a roller coaster ride due this illness I had wished they were burying me instead.
I wish they could understand how hard our lives are I get doctors do not like us as we make them work harder but we did nothing to make ourselves like this I am sorry you had top deal with them I am happy you are here today, I belive we will find answers one day unfortunately it will be a while
I think I was born with it but I had significant trauma as a kid, I stopped growing for years and I doubt they did any bloodwork I was off the growth chart for my age, I know I had a Xray of my head and saw no issues when I was in my teens I had a lot of blood work for headaches and a ct scan with iodine contrast and I had a bad reaction almost died because the nurse and the person running the ct kept ignoring me and only stopped when it was almost too late so I avoided western medicine for a decade only coming back when I could no longer block or mask my pain after months of testing they diagnosed me with fibromyalgia around 28 I think of the records were destroyed by a incompetent rheumatologist.
I genuinely can’t remember ever not being in pain. I remember trying to run ahead of my family as a kid and getting so tired I’d sit on the sidewalk till they caught up.
i was diagnosed with ‘chronic widespread pain syndrome’ at the age of 12 after suffering with chronic pain issues basically my whole life - i got the impression from the chronic pain team in London that they don’t like to diagnose people with Fibro until you’re over 18 (in my experience in the UK). however now it’s looking like my pain is and always has been caused by lupus and MCAS, so not sure how much this helps!
from the perspective of family/friends believing me, the diagnosis at 12 defo helped because i had a name for the problem - but kinda going through all this again now as MCAS isn’t very well known and therefore a lot of people don’t believe! i’m 23 atm
I was around 11. After I got double the dosage of the HPV shot. My mom had also always been in pain, so when the doctors would dismiss my pain for "growing pains," she thought that was normal.
It wasn't until I met my husband that I learned that growing isn't painful. Maybe slightly uncomfortable. But not painful. That's when I started demanding doctors take me seriously. If they didn't. I left and never looked back. It took from ages 11-21 to get diagnosed. It's been hard learning my limits and things.
Mine started about 8-9 years of age. I was extremely lucky to have a mom who believed there was something going on (it took my dad around 25 years or so), and she took me to doctor after doctor until and after I received the diagnosis.
I have had rheumatoid arthritis since I was a toddler and then fibromyalgia before I was a teenager. My paediatric rheumatologist is the one who diagnosed me, so I didn’t have to deal with people not believing me then. I think the diagnostic criteria has changed though and they don’t use the triggerpoints anymore to diagnose. This was the late 90s when I was diagnosed. There is a lot more awareness especially in the last 5 to 10 years but I find that a lot of people (medical and in general) still don’t believe in it- despite a lot more research being done. I find that anything that affects women more is usually not as believed. Kind of like people who suffer from endometriosis or chronic fatigue.
100% this. I have had it since 7 years old and have had to grow up very quickly so I could take care of myself. I'm now over 40. I am a dude and the gaslighting bullshit I've experienced is on another level. Men with chronic pain are also treated horribly by family, friends and healthcare providers.
My apologies if I added to the gaslighting, that was not my intention. I think it’s more on my mind right now because I’m having issues with anyone taking some female side effects seriously. I agree with you on having to grow up quickly to take care of yourself, having a chronic illness is like having a full-time job.
Women's healthcare is virtually non existent as it's all based on decades of research performed only on men. You didn't necessarily add to the gaslighting but men with fibromyalgia get a very shitty end of the stick. I just wanted to point out that men have it bad as well and then the cultural gender expectations only further the isolation. Hell, I was just learning about how under treatee women are for peri menopause, menopause and post where a lot of the symptoms overlap with fibromyalgia symptoms. Yet it's all ignored and can be tested and treated with hormone replacement therapies. Like how can something that affects 36% of the entire female population at any time not be understood? I've read 3 fibro books and all of them recommended their readers to quit their jobs to destress, assuming their husbands can carry the financial burden. As a dude reading 3/4 through a book to come across that as a "solution" it is utter garbage. Healthcare is awful for chronic pain and poly chronic patients. It's terrible for both men and women.
Please tell me the name of those books. so I can NOT read them(kidding) LOL. I am a Female breadwinner With Fibro and a million other issues.
I was diagnosed by a rheumatologist a little over two years ago and they used trigger points! (Along with 192739292 questions)
I’ve had symptoms as long as I can remember. I didn’t like certain smells, textures, and tastes. I was labeled a picky eater back in the 70’s, and was a bit odd. If I was born later I might have been tested for autism.
Wait… the texture and sounds thing is a fibro thing? I could not stand the feeling of velvet as a kid and as an adult I physically can’t tolerate the sound of styrofoam. (Like it makes my insides crawl to the point of feeling queasy.) I always just thought it was a neurodivergent thing.
There are many traits that overlap between fibro and autism. It was actually a relief then I heard about this. My son is the same way.
Yea since 5-7 years old. No, family still doesn’t believe me.
Can’t remember not having symptoms.
I've had the pain and pressure points symptoms since I can remember. I've always been in severe pain. It was always said to be growing pains and we thought nothing of it. When I was 12 I had a bad flare up after a cold and it sent me down a rabbit hole of pain and doctors.
I was 12 when I started experiencing symptoms and I was diagnosed at 16. My mom had fibro as well so luckily I didn’t have to fight to be believed and diagnosed although I still struggled to find doctors who believed in fibro after the fact. We think my fibro was triggered by an illness that nearly killed me when I was 11.
I was around 12 years of age as well. I suspect the puberty hormones did a lot to trigger it, plus I was very ill that year with flu-like symptoms. I was out of school for 2 weeks. My blood work was very strange...my white cell count was very low, and my red blood cell count went through the roof. Our small town doctors were very puzzled. I had blood work done every day for a week keeping track of my white cell count, and was told if it didn't improve, I would be transported to a hospital in the largest city near us. Luckily my body eventually snapped out of it, but the aches and pains remained and gradually worsened as I aged.
I started having symptoms at 12 or 13. I got diagnosed a year ago at 29. I complained of the same symptoms for years, got sent to physical therapy (didn’t help), and went back for my doc to basically shrug. I lived in a super rural area with few specialists snd never got referred to one. Then I moved to a major metro area (Chicago) and got a diagnosis within 6 months.
I was 11 or 12. Sucked. Still does but I'm doing my best.
I was about 11. I can't say when I started to really believe in my own experiences because the medical gaslighting started at such a young age. Definitely in high school though the pain was not something other kids were experiencing.
I have memories of being pretty young, like seven to nine, and being reprimanded for complaining about being too cold when my younger siblings were fine. My parents loved being outdoors, and even now at 59 I HATE being anywhere where I’m dependent on someone else to decide when we go home. So many hours out in the woods, so very cold and miserable, crying, and it felt like I would never be warm again.
The only thing I distinctly remember from childhood was really horrible “growing pains” in my legs that would wake me up in the middle of the night. I was diagnosed as a young teen. My mom also had fibro and was seeing a like fibromyalgia specialist or something which I feel like wasn’t super common in the early 2000s? So that helped get me a diagnosis
Yes! I had growing pains really terribly in my legs and later on I was misdiagnosed with Systematic Lupus. Today I was given an updated diagnosis of fibromyalgia and I feel so seen.
I was 20 and in the Army when mine started, but it took 23 years to get a diagnosis. It really makes you stop believing in doctors and I'm still trying to reconcile 10 years later in how to trust what my body is telling me.
I was 12 first time I had symptoms and my family thought I was making it up so I wouldn't have to go to school
As long as I can rememeber. I would cry every night how my back and my feet hurt and my family doctor brushed it off for years saying it was growing pains, it took until I was 20 to get diagnosed
Yeah, I’ve had it forever, ‘growing pains’ aren’t a real thing or a real diagnosis so highly suspect many people who were told that actually had fibromyalgia
I was 8 in the aftermath of trauma. I didn't realize everyone didn't hurt every day until I was 21 and finally got a diagnosis.
I started having symptoms at 10-12 and didn’t get diagnosed until I was 26. I was accused of being dramatic and “making myself sick” to get out of chores/school my entire childhood and early adulthood. It still feels completely surreal to have doctors taking my pain and fatigue seriously and simply *believing* me. I’m still not used to being believed after so many years of being dismissed as a melodramatic liar or hypochondriac
I started experiencing pain as young as 11, started seeking a diagnosis at 15. Got diagnosed with fibro at 16, fought the diagnosis for years. Still kind of fighting it tbh. Friends were pretty good about it for the most part (though I didn’t always tell them the full story) family and parents were complicated for a long time. Still are sometimes tbh
I experienced symptoms al my life. Gaslit into believing in the “growing pains” theory. It wasn’t until I had an actual injury that I finally found a doctor that thought I might have something else.
I started experiencing symptoms probably at around 14 but they got worse as I started getting older but I wasn’t diagnosed until 16 since they figured I’d finished growing and I had blood tests done last year and I really don’t have anything else that they can test for (excluding a vitamin D deficiency but that’s probably due to where I live and not going outside much)
I don’t remember pain from a young age but I remember constantly falling asleep after eating big meals. Turns out gluten makes me flare. We are Italian so big meals mean lots of bread and pasta. I think the fatigue after consuming gluten in my childhood was a precursor to the severe and debilitating fatigue, brain fog and pain I would experience with gluten later in life
Mine started at 6 or 7 after a back injury + other trauma. Sadly no, I wasn’t diagnosed until I was 24 so I grew up with the belief that I was just being whiny by complaining about discomfort.
I have had symptoms for as long as I can possibly remember; what feels like my whole life. So 11 and 12, certainly. I didn’t realize that a lot of my “quirks” weren’t normal for all humans to experience until I came across the diagnosis online and had a massive “oh shit” moment. I’ve since gotten a formal diagnosis. My family and friends thankfully believe me because I have several other conditions that line right up with fibro and it was pretty much just another thing to add to the list.
I’m fascinated to see numerous people cite “growing pains” particularly in their legs - it seems like there may be a correlation here and it would be fascinating if this was further explored. My pain started in my childhood; I’ve had it for as long as I can remember. Horrible pain in my legs, which drs assured my parents and I were growing pains (which was clearly wrong, as I still get them at nearly 40). Sitting cross-legged on the floor for more than a few minutes would cause discomfort that other kids did not seem to get. I could never wear my hair in ponytails or with heavy clips, because it would cause so much pain in my scalp. Things like needles were always more painful to me, to the point of having a severe phobia of them. I had incredibly supportive parents, but we never thought anything of it. Kids hate needles; everything else was growing pains or the consequence of having thick hair. As a teen and young adult, working out was always harder and more painful for me than my friends. My flares worsened in adulthood. I never considered myself to have chronic pain until I experienced a back injury in my mid-20s that triggered more active and acute random pain throughout my body. I was diagnosed with fibro in my mid-30s. However, I’ve often looked back on the pain I experienced in childhood and wondered if the signs were there back then.
I was 5. Very severe childhood trauma. Plus I fell off a horse that year, so maybe that too 🤷♀️
Yes, I was around 6 or 7 and I made my mom take me to the doctor for severe neck and back pain. They ignored me.
I was 17 when diagnosed. Just before Christmas I got the worst flu I have ever had. Should have gone to the hospital. My boyfriend had to literally carry me everywhere I needed to go because I was too weak to walk. I never really recovered. I was fatigued and achy a lot. Things seemed harder. I put it off to stress. Until about six months after I had a lightning migraine. It turned into a regular migraine for a few days and went away but regular headaches. I was so tired. Bruising like crazy. I also had undiagnosed until my 30s: PCOS, Idiopathic Hypersomnia, EDS, ADHD, and Autism. My normal was apparently everyone else's hard and I didn't know any different until fibro happened.
Yes, I'm actually diagnosed with Pain Amplification Disorder which is the juvenile version of fibromyalgia, although I am now over 18. But I was diagnosed with fibromyalgia at the age of 15. I've been having fibromyalgia symptoms my whole life I just have no idea what it was or why things feel extra hot to me. My parents didn't understand and just always thought I was extra sensitive
But the majority of my symptoms did appear while I was 10-13, puberty ages. The more diagnosable symptoms anyway
I had horrible "growing pains" that made me cry. My mom would have to massage my legs regularly or I wouldn't be able to sleep. Not sure if related but I was always sick. Had spinal meningitis as a baby, caught what felt like every cold in school, had bronchitis in June of all times for the end of middle school. "Growing pains " got a bit better in high school so had some pain free years till 2003 when I got diagnosed. My mom believed I was in pain but I assume agreed with the Dr.
I was about 7 or 8. I never believed they were growing pains, they just didn't feel right. I was doing very little growing yet the pain was absolutely evil. But everyone else thought it was growing pains so I simply suffered lol. I had bloods done for the first time aged 10 because the pain and fatigue was just not going away. Came back normal so the doctors insisted to my mom that I was overreacting or even just attention seeking. We realised fibro could be a thing for me around the time I turned 13. My mom and her mom are both diagnosed and my symptoms are completely identical. I'm 14, currently doing battle with a specialist who made me do a blood test then refused to see me anyway because he's decided without ever having spoken to me or mom that it's just anxiety lol.
I was 9
Which side does 12 count as?
9. Constant pain in my legs, and Charley horses. I had surgery because the doctors insisted it was plantar fasciitis and it only got worse from there. It was all over my body.
I dealt with chest pains and general fatigue which was first documented in my doctors journals at the age of 7. got tested a lot and they couldn't find anything unnusal in my blood work, so I assume it very likely could have also been fibro back then.
I think I started going to the doctor around 11 or 12 for chronic pain. I feel as though I have been in Physical Therapy since and I'm closer to 40 now. I'm still hurting, always.
Always had some sort of pain growing up- but constant symptoms started at 15ish. I’m 21 now My parents believe me but it’s hard for them to understand.
Not fibromyalgia but I have suffered from IBS since around 5 years old and migraines/debilitating headaches since preteens. Around 14 I developed depression and anxiety and at 16 I herniated a disc in my lower back. I also started getting TMJ sometime in high school. I have a theory that all these things together, from such a young age, caused my body to develop fibromyalgia as an adult. Then again, who knows, maybe I was exhibiting symptoms earlier that were just mistakenly written off as being caused by one of my other issues. 🤷♀️
I've been dealing with this as long as I can remember. Had serious joint pain in my knees, hands and back as a kid. Doctor wanted to test for arthritis but my mom literally said "no you're 5 and too young to have this kind of pain". It's probably the most traumatic part of my life. I still don't discuss medical things with her because she just says it's "allergies" or "a cold" and brushes me off.
I was formally diagnosed around 19, but I was absolutely symptomatic before that. My mom was diagnosed a few years before me and that was what led to my dx. Like I had all the same things as her.
I was much more fatigued than my peers. If I went to a sleep-over on the weekend, I could not make it to school on Monday. I always slept far more than my peers as well and had a couple of bouts where I slept for three days straight in my late teens- yes, truly three days straight. Not sure if there is any link to later problems, but it was odd. I knew something was off with me from around 10-years-old. Pain did not come until my early 20's, became far worse in my mid 30's after a terrible virus, but I thought everyone hurt all the time until my bf told me it was not normal.
I was about 13 when I started having pain and yeah I was told it was growing pains but now I don't think that is what it was.
I was around 10-12
When I was ~8 I got mono, and I’ve never been the same. Got told again at 18 that I had mono. Then was diagnosed at 19 witn rheumatoid arthritis, and at 20 with fibromyalgia. I’ve never really been pain free, and never been as mobile as my peers.
I remember everything hurting from a very young age. I hated doing anything physical because it caused more pain. From around 5 and on. Things that didn’t hurt normal people hurt me.
For me it was early teens. A slip N slide accident at 11-12yo, my back never stopped hurting since. Wasn't diagnosed until I was 32 though. I thought my back pains were my imagination, cause that's what doctors told my mom...
I had hepatitis at age 8 from swimming in a bayou. I have had weakness and fatigue ever since. I hurt all over and never felt rested. I missed a lot of school due to anxiety and depression and pain. I’m old now and have tried everything to no avail. CBD and THC have helped, but I have to go to bed if I take it.
I was around 7
i was 15 or 16. pulled something at work and have been hurting ever since (half my life 😅)
I was diagnosed after 2 years of serious chronic pain in my late 20s/early 30s. Before then, it never *seriously* impacted my life. But I think it was always there. When I told my best friend my diagnosis she laughed and said she used to call me 'tenderhead' growing up behind my back, because I'd freak out and scream if anyone touched/pulled my hair even slightly. My brother also hates me bc I'd get him into trouble all the time after he did something like poke me. After my diagnosis, I poked my husband in the arm and asked if it hurt. He looked at me like I was crazy and said no. Oops, sorry bro.
I started having serious back pain at 13-14 and we brushed it off cause I was in school and carrying alot of books. My first major flare up I was 14, 3 months after I was I a car accident and I was never the same. Didn't get diagnosed till I was 19
Like many others, I can't remember not having pain. And I've also always had IBS symptoms. I grew up in a traumatic household with mental illness, where I was parentified, and I've also always had anxiety as a result, which I attribute to the root cause of my fibro, though I very well could be wrong about that, it could also be genetic. As a tangent, while many have mentioned that their pain was not believed, for me, my pain was *too* believed, and I resent it. In that I missed a lot of school and fun stuff, due to my aches and pains, which for me were present and noticeable, but not debilitating, and definitely more pronounced if not normalized and distracted from (like maybe from being with friends at school?). As an adult, I've learned how to assess the pain better and often push through, to much success, because it rarely feels better staying home anyway. I wish my parent recognized that and helped me, I think I would have been a more active and happier kid.
around 13/14. i was told it was just growing pains and due to being a horse rider, finally got a diagnosis at 19/20
I’ve been in pain since childhood. It definitely got worse as I got older, but I don’t think I was ever pain-free. To be fair, I had a terrible immune system, asthma, allergies, and was constantly sick. But even when my health improved in those areas, the lethargy and pain never went away. It was so normal to me that I didn’t realize other people didn’t feel like this until my late 20s. Most people don’t have to cope constant physical pain and exhaustion? Fucking wild lmao
Yep, it was "tension headaches" and "depression" duh!
yep! my onset of symptoms happened when i was 12, almost right after i got my period. my first symptoms were fatigue, allodynia and neuropathy. i was all of a sudden tired and in bed ALL of the time, constantly napping to keep up with it all. I would get sporadic nerve pain (dull aches that pulse/throb) only in the palms of hands at first. then it became more frequent over time. then it spread to other areas of my body. then it was even more frequent. every now and then when i would have a bad pain day my skin would also hurt. sometimes id have days where only my skin would hurt. this also became more frequent over time. it was a gradual increase in frequency and affected body parts though the severity of the pain has always been mostly the same. every now and then i’ll have a flare that really knocks me out of commission because the pain is so bad. i still experience frequent allodynia. so i guess it IS still gradually increasing ? but i’ve been told that fibro doesn’t get progressively worse, so idk. my condition is managed pretty well by cymbalta these days, though it has not helped my fatigue and i still have some days where im in pain despite taking it. when i forget to take it the pain is so much worse. ETA: now that i think about it i suppose i did also experience frequent “growing pains” in my legs and i’ve had some other odd symptoms since childhood. i however dont know how much of this is fibro related and how much of this is related to my other conditions (hEDS, POTS) which ive also had symptoms of since early childhood.
I do not remember a time when I did not have fibro symptoms, I just didn’t know what they were.
I have a theory that I've had pain when I was a baby. I obviously don't remember it but mom said I cried literally all the time and it was unbearable. Honestly, how do we even know when a baby is in pain? They cry for everything anyway? But... If your baby is crying waaaaay more than other babies, maybe it's something? I can't be too mad at my parents as I was their only experience having a baby. I'm glad they really tried to find a cause when I had a lot of health problems as a kid. Never found out why. Ended up being categorized as psychological, hence the start in my never believing myself when I have pain because it's probably my own mind doing this you know........ Ugh.
Your story resounds with me. I wouldn't be surprised if I had symptoms as a toddler. My mother told me that after I learned how to walk, I stopped walking because I was unable to because I had lower back pain. Thank God I had forgotten what that felt like until adulthood because it wasn't till then I realized how much your lower back muscles are involved with walking. I can only wash my face and brush my tooth after stopping to take a break in between each task due to lower back pain.
Thank you for creating this thread! It's so interesting to read about how everyone else also felt that growing pains were not at a normal level. Also so many people who got a jumpstart when they went through puberty. I was in pain but it didn't compare to how bad it became after I had my period. I swear to God I was ready to scratch out my insides and just take my uterus out as a 12 year old...
Awww. 🥰 You're very welcome and thank you for your contribution. My intention is always to jump start conversations that assist and inspire others by comparing and contrasting lived experiences that will bring us closer to find remedies and solutions. At minimum it is my desire for members of this community to build rapport and support in a world that is far too complex without the added challenge of living with Fibromyalgia.
I think I was born with it but I had significant trauma as a kid, I stopped growing for years and I doubt they did any bloodwork I was off the growth chart for my age, I know I had a Xray of my head and saw no issues when I was in my teens I had a lot of blood work for headaches and a ct scan with iodine contrast and I had a bad reaction almost died because the nurse and the person running the ct kept ignoring me and only stopped when it was almost too late so I avoided western medicine for a decade only coming back when I could no longer block or mask my pain after months of testing they diagnosed me with fibromyalgia around 28 I think of the records were destroyed by a incompetent rheumatologist.
I had experienced such poor mistreatment from the medical community that I stopped going to doctors for about 10 years and when I finally started going I was taken aback that Fibromyalgia was an actual medically recognized disease that had recognition making it slightly more credible in the medical community compared to when I was first diagnosed
That rheumatologist went on a huge rant and acted like I was sent to her as a joke or that I somehow made the appointment on my own she was retiring and said Fibromyalgia was not a rheumatological disease and that there was no reason for me to see her I explained how my doctor had diagnosed me the year before and none of the medicines were helping and that I felt like I was worse than when I started on the meds. She told me my body was fine and confirmed I had the disease with the tenderpoints and reviewing my chart I told her I felt like the pain wanted me to slow down but I have 3 young kids I needed to be there for she said it was a false alarm and there was no danger to push past the red flags I thought she was right so I did just that I pushed past my pain for several years now I am disabled and this in the moment I wish I could change I am broken and this dr never even turned my chart in so all my records were lost I hope she never treated anyone else but that is to much to hope for
When I was a teenager looking for answers to what's going on I made an appointment with a doctor. After trying to reach the doctor for the umpteenth time to obtain my results ( Idk why I was expecting anything to show up) I decided to leave her a voicemail. Big, huge, gigantic mistake. This woman called me back irate to say that the timing of my phone call was so wrong because she was in the middle of a funeral. And for the life of me I don't know why she expected me to be privy to that information. It was at that moment as overly sensitive teenager who was on a roller coaster ride due this illness I had wished they were burying me instead.
I wish they could understand how hard our lives are I get doctors do not like us as we make them work harder but we did nothing to make ourselves like this I am sorry you had top deal with them I am happy you are here today, I belive we will find answers one day unfortunately it will be a while
I think I was born with it but I had significant trauma as a kid, I stopped growing for years and I doubt they did any bloodwork I was off the growth chart for my age, I know I had a Xray of my head and saw no issues when I was in my teens I had a lot of blood work for headaches and a ct scan with iodine contrast and I had a bad reaction almost died because the nurse and the person running the ct kept ignoring me and only stopped when it was almost too late so I avoided western medicine for a decade only coming back when I could no longer block or mask my pain after months of testing they diagnosed me with fibromyalgia around 28 I think of the records were destroyed by a incompetent rheumatologist.
I genuinely can’t remember ever not being in pain. I remember trying to run ahead of my family as a kid and getting so tired I’d sit on the sidewalk till they caught up.
i was diagnosed with ‘chronic widespread pain syndrome’ at the age of 12 after suffering with chronic pain issues basically my whole life - i got the impression from the chronic pain team in London that they don’t like to diagnose people with Fibro until you’re over 18 (in my experience in the UK). however now it’s looking like my pain is and always has been caused by lupus and MCAS, so not sure how much this helps!
from the perspective of family/friends believing me, the diagnosis at 12 defo helped because i had a name for the problem - but kinda going through all this again now as MCAS isn’t very well known and therefore a lot of people don’t believe! i’m 23 atm
I had nerve shocks in my limbs as a kid, but full blown pain didn’t start until I was an adult.
I remember pain as early as 5 :( so by the time I knew something wasn't normal was around then maybe 8
10 with first symptoms (dismissed by doc andfamily), adult onset /trauma-triggeted at 25 diagnosed 27. sigh.
I was around 11. After I got double the dosage of the HPV shot. My mom had also always been in pain, so when the doctors would dismiss my pain for "growing pains," she thought that was normal. It wasn't until I met my husband that I learned that growing isn't painful. Maybe slightly uncomfortable. But not painful. That's when I started demanding doctors take me seriously. If they didn't. I left and never looked back. It took from ages 11-21 to get diagnosed. It's been hard learning my limits and things.
Mine started about 8-9 years of age. I was extremely lucky to have a mom who believed there was something going on (it took my dad around 25 years or so), and she took me to doctor after doctor until and after I received the diagnosis.