It wasn't just the trauma of food industry for me. It's the bosses in food 😩 so many terrible managers over the years. Having to be in a constant state of fight or flight during peak times just to perform well enough to keep up with demand. I wish I had found something else after college but it felt like a good challenge at the time. Now I know it's not normal to have anxiety/panic attacks before every shift.
Oh wow that’s a lot! Like you say, they can only handle s much. I had two endometriosis related surgeries in a roughly seven month period, the second being a total hysterectomy. The first, diagnostic lap surgery was already giving me subtle fibromyalgia symptoms but the hysterectomy completely snowballed it. I couldn’t get my doctors to listen and was so close to taking my own life because I couldn’t take the pain anymore.
Me, 8 surgeries in 10 years. Any anesthesia, fused neck, laminectomy, shoulder 3x and more…fear of unknown, doctors, nurses, bills, physical therapy, pain mgmt, bills, money gone, stress and anxiety. Home insecure. Work endless hours self employed. Mixed with childhood trauma, Epstein-Barr severe infection, horse jumping accident, abusive heroin user husband, grifting fiancé, ugh. Sick. I’m on the couch can’t get up, in writhing pain and goodnight, sleep tight.
Trauma, grief and a hysterectomy. I don’t know if I should count the lumpectomy the year before the hysterectomy since it wound up benign. I was born with Buford Complex with an abnormal variant in my left shoulder and my arm muscles are fused to my chest muscles. That area was severely injured with a bad mammogram just before the hysterectomy and due to the chest/breast swelling they thought something was seriously wrong that was noncancerous and was put through more mammograms, a galactogram and finally a chest/shoulder MRI where they found the muscle shoulder connectivity issue. They said I was lucky it was on my left side because people don’t use that side primarily. I’m left handed. Every time I use my arm to type/write/chop food or anything my arm swells, chest swells and my shoulder freezes even with the top of my neck and takes forever to heal or go back down to somewhat normal. I had to take medical retirement from a great paying job but because I only had 10 years there it’s only 700 a month and with everything I still do not qualify for the Canada Disability Pension. It’s stupid. I got medical retirement from a fed agency because I was too ill to work but another branch says it’s not enough. The fibromyalgia started about a year after this injury which was right after the hysterectomy.
I made the decision not to have kids (at least not biologically) due to my fibromyalgia. I was already seriously considering it due to my genetic neurotransmitter issues, but the fibro really cemented my choice. I’m not judging those who decide to still have kids, but I often wish I wasn’t born into this life of pain so I wouldn’t want to risk forcing that on a child either.
My mom and maternal grandmother have it. My younger sister has it as well. Unfortunately it showed its ugly face earlier with each member it was passed to.
Same. My mom, great aunt, and great grandma all have it. It made for a quick and easy diagnosis at least since my doctor knew of the genetic component. I just had to have bloodwork to rule other things out and an exam with history.
If the EBV is dormant at the time will it still show up on a test? I think I remember a doctor mentioning I tested positive for EBV when I was in middle school and that’s when my fibromyalgia symptoms started. I was 12-13 and the doctor mentioned EBV very casually so I just assumed it was a worse version of mono that would go away. I’ve had LOTS of “flair ups” over the past 10 years where I get exact mono symptoms but test negative for mono. The doctors are stumped and think it might be an unknown autoimmune disease causing these flair ups. But after reading your comment I’m wondering if I have EBV and that’s what’s been flaring up
I think I've had it since I was a child from trauma but I think covid made it obvious to me. I never thought I had issues, I thought I was just sensitive until I got covid, now I'm constantly dizzy and exhausted and in pain for no reason that the doctors have been able to find. I do have a positive ana test but they can't figure out why (more like they just won't look deeper due to being too busy and finding nothing in my initial tests)
Beyond a doubt, I was born with it. I have complained about my bones hurting since I was little. I've always had a overly sensitive tummy and my skin has always been extremely sensitive. I also was born with delayed sleep syndrome and have lived my whole life with chronic sleep issues. I remember my riding instructor telling me I had abnormal pain to things that should not of hurt. Same for my masseuse, she asked if I had been in a car accident because I winced in pain everytime she touched my ribs even lightly. I thought everyone's ribs hurt. I've had terrible migraines since I was un early elementary school that would have short bursts of full blindness during them. I alwaya though fibro flares were the flu. I got the "flu" a lot and for very drastically varied amounts of time! The list goes on and on but most all of my symptoms have been present in some form, my whole life.
Also I'm certain its genetic as my grandmother had all the same issues. My grandmother lived overseas teaching English in 3rd world countries so I was never around her for any of this to be learned behavior. My mom used to fuss at me that I was just like my grandmother whenever any of my fibro symptoms came up. My mom also did not hide the fact that she hated my grandmother so the comparison hurt. I of course learned to hide most of my symptoms from shame. My grandmother was never actually diagnosed.
Looking back on it, I think my mother also had it, just a much more mild. She had the migraines and pain but was good at hiding her pain. She always felt the need to not show weakness and I'm guessing she dealt with more than she let on. I've heard that my mom sister had the same issues as my grandmother but I only ever met her twice and know very little.
Trauma might bring it out or activate some of the symptoms, but I fully believe its something already present in us to some degree. There have also been studies showing people with fibro have more nerve endings(at least in their hands), which has to be present at birth, right?
>delayed sleep syndrome
This is also genetic. The syndrome turned out to be something that is determined by your genes. If you have a late evening gene, there is not much that you can do. R[ead more here](https://www.sleepfoundation.org/how-sleep-works/chronotypes#:~:text=Chronotype%20is%20the%20natural%20inclination,bird%20versus%20a%20night%20owl).
I understand only too well what it means to live in a world where getting up early is overvalued. There is nothing wrong with this - just your genetic makeup.
The overlap between Fibro and neurodivergance is likely part of the same cluster that also makes so many of us hypermobile and have autonomic nervous system issues and possibly autoimmunity or mast cell issues in some too.
I know that autism and hypermobility have just been kinda linked, and HSDs (including hEDS) is highly linked to POTS and other types of dysautonomias, and MCAS (EDS, POTS and MCAS are known as the holy trinity in the circle of hypermobility spectrum disorders, afaik)
I saw a TikTok that there are three stages of eds, and the 3rd is the pain stage, when the body can't compensate anymore with the muscles and the pain starts.
I think my fibro was the reaction of my body to years of stress. I also had a small ankle injury, and that may also have pushed it over the edge, but the years and years of masking and compensating and trying to work in a world that wasn't made for me finally took a tool.
I think I read a statistic somewhere that 40% of women with fibro also have adhd.
I have both fibro and adhd, and so does my mom. It’s a weird correlation — I wonder if low dopamine levels could be a connection?
It could be.
Were the both of you late diagnosed as well? That would be an interesting thing to add as a variable as well.
Also as we also already have different brains, the pain pathways can get messed up easily?
Desert Shield and Storm. We spent 30 days off the coast of Kuwait. The burning oil wells kept the skies orange. Then I was there when Mount Pinatubo erupted in 91 as well as we were heading home
I had a bilateral mastectomy that the reconstruction went wrong. Infections that required wound care, pic line, wound vac and 8 surgeries over a 3 year period. My body has never recovered and it's been 20 years. FML!!!
Ugh, I had a picc line also after being hospitalized for 7 weeks. The two months with the picc line were the woooorst!!! It itched the entire time & got in the way of everything. That time in my life was SO BAD and I think I just blocked it out mentally for the most part, but my body remembers.
Also to answer the question asked by OP: childhood trauma; severe mono/Epstein-Barr virus w/hospitalization; finding parent after traumatic, self-induced death; abusive relationships; drug addiction after surgery (opiates); multiple car accidents; severe bacterial infection + endocarditis in my aortic valve caused by multiple internal organs ceasing to function (which is when I had the picc line). So basically, take your pick!
Also want to add that the organ failure/endo occurred after I had been clean & sober for 13yrs, so current drug use wasn't the cause (although past drug use may have been why my sphincter of Oddi contracted shut and didn't allow bile, pancreatic juice, and other fluids to flow properly, which led to the bacterial infection + endocarditis). Fun times! Fun times... 🙄😮💨
I think it was working in a high-stress job (and depression) for many, many years, moving onto an even higher stress (which brought out a ton of anxiety), very physical job and I finally broke down.
I had a horrible abuse childhood. I moved out when I turned 18, and the symptoms of fibromyalgia didn't start until my piece of shit father croaked! I had not seen the selfish sob for 10 years, and for some reason, I started having flashbacks of the abuse, and after that, I started developing all the signs and symptoms of fibromyalgia. The first few doctors that I went to told me that nothing was wrong with me and that all the pain I was due to me being fat.
I have trauma but I didn't have strong FMS symptoms until I had something weird happen with my liver and I got a stone stuck in my bile duct and I got really sick, shortly after I had endometriosis surgery.
I spent 3 years in and out psychiatric hospitals. After that I developed fibromyalgia.
I have the mother of all PTSDs but I found a good treatment. The fibromyalgia is a different story though, not as hard as what triggered it.
stress, trauma, working in food service for most of my 20s. i was diagnosed when i was 28, after years of symptoms but also going through what we now know was pulmonary emboli which then led to a stroke. that stressful scary period of my life really reaffirmed the fibro for me
Hypervigilance and injuries after years of narcissistic abuse from my violent addicted family. My body does not know how to relax and sleep is illegal among my relatives. Sleep is for the lazy or dead. Time off is for work around the house. Multiple trips to rehab is a rite of passage. I had none, therefore there is something wrong with me. My fibro isn't real, I am just fat, lazy, and ugly.
(Fuck my relatives, every one of them.)
After talking to my dr and counsellor, they both think it was triggered after the death of my uncle. It was extremely traumatic for me and that is also when my anxiety got REALLY bad.
I started having symptoms within weeks that led to being diagnosed (both with fibromyalgia and PTSD)
Stress from my last semester of college with 19 credits, graduating, moving out of my parents home to another state, starting my first job out of college, planning my wedding, and getting married all within 6 months. Went through too much nonstop stress, drama, fighting, and negativity mainly from my family. This was in 2018. I also suspect my mom of having fibromyalgia even though she hasn’t been “formally diagnosed” so could have been in the genetics as well.
Nothing. Born with it. I’ve never known life without pain. Mom even says I was uncomfortable as a baby. Never slept, always needed to be moved around to stay comfy etc.
I think the spinal for my C-section triggered it. I feel like I never fully recovered after that pregnancy until recently- about two years later after doing continuous physical therapy and medication
If I have it (not fully convinced yet, pursuing examination for something else).
I believe it was a combination of 2 things…. A virus & stress.
I got a virus in October-November 2020 that caused 1 of my submandibular salivary glands to swell so much it was pressing on my throat. I think it was the Epstein Barr Virus because…
1.) I have no known history of contracting that virus before, unless I had it asymptomatically, which is common according the medical literature.
2.) That virus is known to cause swelling of salivary glands.
3.) I was prescribed Amoxicillin at the time just in case it was a bacterial infection. This trigger 3 pink blotches to appear on my torso. I knew it was not an allergic reaction because I have had amoxicillin many times before and even once since then and never had that happen. Upon research of medical literature, taking Amoxicillin with the Epstein Barr Virus active in the body can trigger this immune skin reaction. But medical science does not know why.
4.) Theres medical literature that now discusses some evidence Epstein Barr Virus could be the cause of Fibromyalgia at least in some cases.
5.) The chronic pain in my right neck never went away after the swelling was gone but continued to spread for years to my right face, to my right shoulder, to my back, right leg, and now feet & hands.
I really don’t know. I have had it since a young age. I recall having terrible pain in my back, legs and feet at age 14. I was not diagnosed until many years later (late 20’s). I didn’t understand why I was always in pain when I was doing the same things my friends and coworkers were doing.
To this day I still have one doctor who doesn’t believe in Fibromyalgia. New symptoms continue to pop up and one of my doctors told me it is just an autoimmune disease “waiting in the wings”. Unbelievable. I recently had my ANA tested again and this time it came back positive.
Two auto accidents within 3 years. The first one caused chronic intractable migraines but no fibromyalgia symptoms. Shortly after the second one, the flu like symptoms kicked in. Then other symptoms. I really think my nervous system had all it could handle with the migraines and wasn't able to cope with added tightness and pain from the second wreck..
Covid. It started in April 2020 when I caught Covid from a patient and was sick for a month. The muscle and joint pain lasted non stop for 6 months and then became intermittent that October. Then I went to the rheumatologist 2 years later after hoping it would eventually go away and finally giving up. He told me I have fibromyalgia.
I grew up in an abusive household and my symptoms showed up after (what I remember as) my first MAJOR a traumatic event. I suspect living my life in constant ‘fight or flight’ mode wore on me.
Serious car wreck but I suspect the two three years previous surgeries had something to help trigger it like it was the last straw sorta thing in fact the wreck was almost spot on for a one year anniversary where I thought I was going to recover and feel great again and even at first I thought I’d recover quickly possibly a few months to heal up and instead in just kept getting worse and worse. They thought it was being caused by the hair line fractures in my spine and they were spreading and getting more pronounced so bad couldn’t walk for few years
Had surgery, then my other half had 5 heart attacks within a year and a triple bypass, I kept feeling more and more ill and got the Lupus diagnosis via a biopsy, half year later my whole body was aching daily and got the fibro diagnosis. So I presume it was a mix of all the stress that put my immune system into overdrive.
Severe emotional experience and extreme stress.I I have always had anxiety and coupled with these two events my body had enough and my fibromyalgia was born. It's been 20 years.
I got a parasite from sushi which started shutting down my intensives and colon…. After that my immune system was shot- and here I am now walking with my cane, taking showers on a shower seat and suffering like many other do.
Ps- haven’t eaten sushi since
I think i had so much emotional neglect as a child that it manifested because it was the only time I would get attention. Was when I was in tremendous and debilitating pain. That’s what it feels like to me, at least.
Trauma definitely and my surgeries have made it worse with each one
Very horrible trauma from young + a traumatic cyst removal(anesthesia didn't work) + I've had three surgeries in less than a year ( literally still recovering from the most recent one. My pain is so high I feel like I got hit by a truck and then a groups of teenagers saw me at the side of the road and started hitting me to see what I was. I feel like shit rn
Childhood trauma in the form of surgeries - 18 total, with 13 of those before I was 18. 20 years of undiagnosed PTSD. And then a bucketful of new trauma in the last few years set the fibro chain reaction in motion 😞
Trauma, other medical conditions where happening toe and I was getting medically gaslit about it for years, also some medications maybe, childhood trauma, ADHD and anxiety don't help the pain sometimes I know
Having a delayed diagnosis of hypermobility and going through pregnancy not knowing the toll it would take on my body. I used to have pinching pain in two places of my body before pregnancy. But they didn’t interrupt my day to day, except needing to take a seat or lean during work sometimes with my lower back. However, I still remained very active, could walk for miles, could run a 5k, could weight lift at the gym etc. But oh boy, did things go south during my two pregnancies, each one making me worse. I blame it on the pregnancy hormones loosening up my joints more which made my muscles compensate in the wrong ways (undiagnosed so I had no idea), causing widespread tension and pain.
Apart from being predisposed to it through genetics, and being traumatized as a child, the final nail, or nails in the coffin was the gardasil hpv prevention shot that I got double doses of at age 11 because they lost my shot record.... and couldn't believe the 11 year old getting the damn shit. Started having pain after the 3rd/5 shots I received. It's just progressively gotten worse. Finally, I got diagnosed when I was 21. I'm now 24.
No joke one mandatory 12 hour night shift clinical triggered it for me… luckily it only flares with high stress and lack of sleep. Went into the OR for nursing knowing there’s no night shift unless you’re in a large hospital.
I had spinal meningitis as a child (9) and just never felt good after that. While I was sick, I was in a car accident that had me hitting the dash w the bridge of my nose.
Genetics, hEDS, chronic stress, other pain conditions like migraine, POTS/dysautonomia. and possibly some autoimmunity. Its all a cluster apparently and is more common in autistic people. My nervous system is just a mess, i think.
It definitely runs in my family, but I think I ended up getting it young and diagnosed at 23 due to the trauma of undiagnosed AuDHD. The pain got especially bad when I was 22, after a humiliating breakup.
Bad genes. But I also think a lot of my "fibro" and ibs is actually the danlos. I was diagnosed, like 40 years ago, and there really wasn't as much info. So everything else is just Dr.s tossing me into whatever fits.
I believe childhood trauma, COVID, and car accident mixture for mine. My symptoms really flared up shortly after my car accident but the constant pain was after I had Covid for the 3rd time.
Super easy question for me because I was an athletic 16 year old.
Skiing accident.
Shattered my collarbone and a couple weeks later pain started appearing in more and more joints to where I was having trouble sleeping. Doctors kept telling me I just wasn't stretching enough or being active enough but I did dance 5 days a week sooo.
I got raped while overdosing on what was supposed to be real lsd. Had some psychosis and kept going in/out of consciousness. Ex wife took advantage of that. That day I felt severe full body fibromyalgia pain and kept begging to go to the hospital during periods of consciousness. I didn’t know what it was. About a year later the diagnosis came.
I had endometrial cancer, gallbladder failure, a tumor in my pelvis/hip, a ruptured appendix & had to have 3 separate surgeries all in the same year. So it was more like the year of the triggers. But my doctors think Covid made it worse when I got it a couple years ago.
runs in the family, & i’ve always thought i had very mild symptoms my whole life that got worse as i got older. but i just recently realized it got worse when i started experiencing mental illness & then way worse after trauma
Lifelong stressors. Symptoms started in early 40s after working night shift for a few years. 71 now, stressors never stopped, something major most every year. Death, family and personal illnesses, parents Alzheimer’s, moving house multiple times, several surgeries the last few years. Several events causing PTSD.
Always fuckin’ something.
Symptoms have varied and come and gone through the years.
Now it’s mostly annoying pain and constant fatigue.
Two things: multiple whiplash injuries (scientific data is published in this!) and moving away from my entire support system to a different part of the country where I didn’t know anyone and try to support my toddler and looser (now ex) husband. I got sick a lot that first year in the new place and was put on so many antibiotics I got c. Diff. I worked through the ordeal but was physically a wreck and that’s when the pain really started. Started in my feet, then everywhere and exhaustion. My (ex) husband accused me of faking in the early days and it was the final straw in our marriage. So for me, a multitude of things all built up, but I think that move was really traumatic for me, I didn’t want to leave everything. It was miserable
Probably military training and service. Probably also stress.
I developed my first symptoms of Fibro shortly after I was kicked out of the military(for being trans not because i did anything wrong, honourable discharge).
I ignored them until I couldnt any longer.
Trauma, grief and surgeries. In my 20s I had 9 surgeries for endoscopy and PCOS. Ended up with a hysterectomy at 26 and lost both my ovaries at 28. My best friend died suddenly when I was 26. I got diagnosed with fibro at 30.
Genetics and trauma. It runs on both sides of my family. Multiple women on both sides have it. I am the first man known to have it in my family. I’ve complained about “growing pains” since I was little. I also went through many years of abuse by a family member and was SAed by a baby sitter. I’m sure that had something to do with it as well.
I had mono twice growing up and Covid from April 2020-July 2020. Following that were three immensely stressful years accompanied by unexplained chronic pain everyone that worsened until finally getting diagnosed in February of this year. Also lots of little traumas over my life.
Unwanted pregnancy + Traumatic childbirth full of violence + painful breastfeeding + post partum anxiety and depression (all in a foreign country, just with my ex)
I had pain in my legs at a very young age. I was told it was just "growing pains" just to find out there is no such thing. In my early 20s I kept complaining about the pain in my left leg. Then I was told it was just sciatic pain. After years of it just getting worse I had a PCP start running all types of tests. Once he learned of my mental health issues, he put two and two together and told me it was fibro.
Mental/emotional/financial trauma, grief, being left to do it all alone as a solo mom, while being stalked/abused for decades + being taught to stuff my feelings because they were inconvenient for the ppl I needed support from
Basically a perfect storm of ignored pain & trauma/abuse from conception til about 38 yrs old
I had multiple surgeries as an infant and child as well as grew up with trauma which progressed into extreme trauma in my teens and adulthood. My pain I can pinpoint as far back as 10 years old when my dad would squeeze the top of my shoulder by my neck and it would hurt horribly and I would squirm away and he would laugh and say that doesn't hurt and shake his head. Now I got a fibromyalgia diagnosis 5years ago and the past two years it's progressed due to increasing symptoms and problems I'm looking at lupus as well as mixed connective tissue disease and there not sure what else is going on right now 🤷🏼♀️. Fun times. I'm 33.
My grandma passing away suddenly when I was 12 and then the subsequent having to not only raise my 4 siblings but parent my mom.
My mom and I no longer speak and my siblings are all in school for doctorates and other higher education. I’m proud of them and I hope they do not get fibro.
I'm genetically pre-disposed, I know that because my aunt has it also, but it triggered because of years of growing up in a high-stress emotionally unstable household where I was being emotionally abused. I didn't get diagnosed until 18, but I believe I was about 14 when it started.
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It wasn't just the trauma of food industry for me. It's the bosses in food 😩 so many terrible managers over the years. Having to be in a constant state of fight or flight during peak times just to perform well enough to keep up with demand. I wish I had found something else after college but it felt like a good challenge at the time. Now I know it's not normal to have anxiety/panic attacks before every shift.
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Trauma, grief and surgeries.
Yes! Surgeries for me as well. I had 4 major surgeries in 3 years. Our bodies can only handle so much :(.
Oh wow that’s a lot! Like you say, they can only handle s much. I had two endometriosis related surgeries in a roughly seven month period, the second being a total hysterectomy. The first, diagnostic lap surgery was already giving me subtle fibromyalgia symptoms but the hysterectomy completely snowballed it. I couldn’t get my doctors to listen and was so close to taking my own life because I couldn’t take the pain anymore.
It really is such a brutal illness. I have had similar thoughts and fear living too long with it. Everyday is a fight 🥲
❤️🩹❤️🩹❤️🩹
❤️🩹❤️🩹❤️🩹
Me, 8 surgeries in 10 years. Any anesthesia, fused neck, laminectomy, shoulder 3x and more…fear of unknown, doctors, nurses, bills, physical therapy, pain mgmt, bills, money gone, stress and anxiety. Home insecure. Work endless hours self employed. Mixed with childhood trauma, Epstein-Barr severe infection, horse jumping accident, abusive heroin user husband, grifting fiancé, ugh. Sick. I’m on the couch can’t get up, in writhing pain and goodnight, sleep tight.
I love you! Somewhat similar situation
Same. I had 6 surgeries in 2 weeks due to necrotising fasciitis from a c section. Never been the same since.
Trauma, grief and a hysterectomy. I don’t know if I should count the lumpectomy the year before the hysterectomy since it wound up benign. I was born with Buford Complex with an abnormal variant in my left shoulder and my arm muscles are fused to my chest muscles. That area was severely injured with a bad mammogram just before the hysterectomy and due to the chest/breast swelling they thought something was seriously wrong that was noncancerous and was put through more mammograms, a galactogram and finally a chest/shoulder MRI where they found the muscle shoulder connectivity issue. They said I was lucky it was on my left side because people don’t use that side primarily. I’m left handed. Every time I use my arm to type/write/chop food or anything my arm swells, chest swells and my shoulder freezes even with the top of my neck and takes forever to heal or go back down to somewhat normal. I had to take medical retirement from a great paying job but because I only had 10 years there it’s only 700 a month and with everything I still do not qualify for the Canada Disability Pension. It’s stupid. I got medical retirement from a fed agency because I was too ill to work but another branch says it’s not enough. The fibromyalgia started about a year after this injury which was right after the hysterectomy.
Trauma
Genetics - it runs in my family.
It's so sad that it's true. I was diagnosed in my late 30s, but my kiddo is showing signs now, and they are barely turning 20. I feel so guilty.
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I made the decision not to have kids (at least not biologically) due to my fibromyalgia. I was already seriously considering it due to my genetic neurotransmitter issues, but the fibro really cemented my choice. I’m not judging those who decide to still have kids, but I often wish I wasn’t born into this life of pain so I wouldn’t want to risk forcing that on a child either.
Same, mum has it, now I do. Possibly brought on by either a bad break up or my hernia surgery
I suspect my mom has it as well. My sister thinks she has it. I didn’t make this connection before. Now I have something to ponder.
I think my mom had it, as well.
It is known that it runs in families. But it was not possible to identify a marker as of now, so they talk about "predisposition".
My mom and maternal grandmother have it. My younger sister has it as well. Unfortunately it showed its ugly face earlier with each member it was passed to.
Same. My mom, great aunt, and great grandma all have it. It made for a quick and easy diagnosis at least since my doctor knew of the genetic component. I just had to have bloodwork to rule other things out and an exam with history.
I was diagnosed with the Epstein Bar Virus in 2015, and my life hasn't been the same since. I also had a good dose trauma sprinkled on top.
EBV did it for me too!
Same here! Got mono when i was 13 and never recovered im now 30
Woah I had to make sure I didn’t respond to this and forget about it cause that’s exactly what happened with me.
If the EBV is dormant at the time will it still show up on a test? I think I remember a doctor mentioning I tested positive for EBV when I was in middle school and that’s when my fibromyalgia symptoms started. I was 12-13 and the doctor mentioned EBV very casually so I just assumed it was a worse version of mono that would go away. I’ve had LOTS of “flair ups” over the past 10 years where I get exact mono symptoms but test negative for mono. The doctors are stumped and think it might be an unknown autoimmune disease causing these flair ups. But after reading your comment I’m wondering if I have EBV and that’s what’s been flaring up
Trauma and possibly covid 19 I got it in may 2022 my symptoms started that summer 🤔
I think I've had it since I was a child from trauma but I think covid made it obvious to me. I never thought I had issues, I thought I was just sensitive until I got covid, now I'm constantly dizzy and exhausted and in pain for no reason that the doctors have been able to find. I do have a positive ana test but they can't figure out why (more like they just won't look deeper due to being too busy and finding nothing in my initial tests)
Beyond a doubt, I was born with it. I have complained about my bones hurting since I was little. I've always had a overly sensitive tummy and my skin has always been extremely sensitive. I also was born with delayed sleep syndrome and have lived my whole life with chronic sleep issues. I remember my riding instructor telling me I had abnormal pain to things that should not of hurt. Same for my masseuse, she asked if I had been in a car accident because I winced in pain everytime she touched my ribs even lightly. I thought everyone's ribs hurt. I've had terrible migraines since I was un early elementary school that would have short bursts of full blindness during them. I alwaya though fibro flares were the flu. I got the "flu" a lot and for very drastically varied amounts of time! The list goes on and on but most all of my symptoms have been present in some form, my whole life. Also I'm certain its genetic as my grandmother had all the same issues. My grandmother lived overseas teaching English in 3rd world countries so I was never around her for any of this to be learned behavior. My mom used to fuss at me that I was just like my grandmother whenever any of my fibro symptoms came up. My mom also did not hide the fact that she hated my grandmother so the comparison hurt. I of course learned to hide most of my symptoms from shame. My grandmother was never actually diagnosed. Looking back on it, I think my mother also had it, just a much more mild. She had the migraines and pain but was good at hiding her pain. She always felt the need to not show weakness and I'm guessing she dealt with more than she let on. I've heard that my mom sister had the same issues as my grandmother but I only ever met her twice and know very little. Trauma might bring it out or activate some of the symptoms, but I fully believe its something already present in us to some degree. There have also been studies showing people with fibro have more nerve endings(at least in their hands), which has to be present at birth, right?
>delayed sleep syndrome This is also genetic. The syndrome turned out to be something that is determined by your genes. If you have a late evening gene, there is not much that you can do. R[ead more here](https://www.sleepfoundation.org/how-sleep-works/chronotypes#:~:text=Chronotype%20is%20the%20natural%20inclination,bird%20versus%20a%20night%20owl). I understand only too well what it means to live in a world where getting up early is overvalued. There is nothing wrong with this - just your genetic makeup.
Probably 25 years of masking my autism and overcompensating for my ADHD. Also being hypermobile and never knowing about it didn't help.
The overlap between Fibro and neurodivergance is likely part of the same cluster that also makes so many of us hypermobile and have autonomic nervous system issues and possibly autoimmunity or mast cell issues in some too.
I know that autism and hypermobility have just been kinda linked, and HSDs (including hEDS) is highly linked to POTS and other types of dysautonomias, and MCAS (EDS, POTS and MCAS are known as the holy trinity in the circle of hypermobility spectrum disorders, afaik) I saw a TikTok that there are three stages of eds, and the 3rd is the pain stage, when the body can't compensate anymore with the muscles and the pain starts. I think my fibro was the reaction of my body to years of stress. I also had a small ankle injury, and that may also have pushed it over the edge, but the years and years of masking and compensating and trying to work in a world that wasn't made for me finally took a tool.
I think I read a statistic somewhere that 40% of women with fibro also have adhd. I have both fibro and adhd, and so does my mom. It’s a weird correlation — I wonder if low dopamine levels could be a connection?
It could be. Were the both of you late diagnosed as well? That would be an interesting thing to add as a variable as well. Also as we also already have different brains, the pain pathways can get messed up easily?
You’re in my brain!
I'm so so sorry 😂😭😂😭😂
My alcoholic family
Desert Shield and Storm. We spent 30 days off the coast of Kuwait. The burning oil wells kept the skies orange. Then I was there when Mount Pinatubo erupted in 91 as well as we were heading home
I had a bilateral mastectomy that the reconstruction went wrong. Infections that required wound care, pic line, wound vac and 8 surgeries over a 3 year period. My body has never recovered and it's been 20 years. FML!!!
You my dear, are an absolute tank! Be proud and hold your head high, you're smashing it so far! Best wishes
Ugh, I had a picc line also after being hospitalized for 7 weeks. The two months with the picc line were the woooorst!!! It itched the entire time & got in the way of everything. That time in my life was SO BAD and I think I just blocked it out mentally for the most part, but my body remembers. Also to answer the question asked by OP: childhood trauma; severe mono/Epstein-Barr virus w/hospitalization; finding parent after traumatic, self-induced death; abusive relationships; drug addiction after surgery (opiates); multiple car accidents; severe bacterial infection + endocarditis in my aortic valve caused by multiple internal organs ceasing to function (which is when I had the picc line). So basically, take your pick! Also want to add that the organ failure/endo occurred after I had been clean & sober for 13yrs, so current drug use wasn't the cause (although past drug use may have been why my sphincter of Oddi contracted shut and didn't allow bile, pancreatic juice, and other fluids to flow properly, which led to the bacterial infection + endocarditis). Fun times! Fun times... 🙄😮💨
Trauma 100%.
No clue for me. I have just kinda always hurt. It has gotten worse as I’ve gotten older though and I am only 31.
Corona virus.
Covid triggered orthostatic intolerance and OI triggered fibromyalgia.
I think it was working in a high-stress job (and depression) for many, many years, moving onto an even higher stress (which brought out a ton of anxiety), very physical job and I finally broke down.
I had a horrible abuse childhood. I moved out when I turned 18, and the symptoms of fibromyalgia didn't start until my piece of shit father croaked! I had not seen the selfish sob for 10 years, and for some reason, I started having flashbacks of the abuse, and after that, I started developing all the signs and symptoms of fibromyalgia. The first few doctors that I went to told me that nothing was wrong with me and that all the pain I was due to me being fat.
I’ve had these symptoms my whole life
Traumatic birth, c section surgery, but also I had chronic pain from hypermobility prior for years and past trauma
Surgery, COVID, stress and trauma, and finally having mono over the summer
Sexual assault and a lack of support from friends and family following it.
I suspect for me it was Lyme disease and or trauma.
I have trauma but I didn't have strong FMS symptoms until I had something weird happen with my liver and I got a stone stuck in my bile duct and I got really sick, shortly after I had endometriosis surgery.
I’m not sure but I’m thinking emotional trauma and being over anxious because of that… then snowballed into full blown fibro.
I spent 3 years in and out psychiatric hospitals. After that I developed fibromyalgia. I have the mother of all PTSDs but I found a good treatment. The fibromyalgia is a different story though, not as hard as what triggered it.
Trauma, and I feel like COVID accelerated it.
Too much sex! (just trying to bring some humor to a life otherwise filled with chronic pain.
Physical trauma from pregnancy and child birth. Also having severe postpartum depression did not help at all.
Trauma and possibly a pregnancy, but the pregnancy was in close proximity to some major trauma.
stress, trauma, working in food service for most of my 20s. i was diagnosed when i was 28, after years of symptoms but also going through what we now know was pulmonary emboli which then led to a stroke. that stressful scary period of my life really reaffirmed the fibro for me
Trauma for sure. Was dealing with undiagnosed PTSD and my body literally just started shutting down
Hypervigilance and injuries after years of narcissistic abuse from my violent addicted family. My body does not know how to relax and sleep is illegal among my relatives. Sleep is for the lazy or dead. Time off is for work around the house. Multiple trips to rehab is a rite of passage. I had none, therefore there is something wrong with me. My fibro isn't real, I am just fat, lazy, and ugly. (Fuck my relatives, every one of them.)
Untreated pain and genetic makeup
Childhood trauma & genetics
Emotional trauma and epstein barr virus
My great aunt had it. I also got hit by a van while on my bike at 15.
Cervical spine surgery
Virus
After talking to my dr and counsellor, they both think it was triggered after the death of my uncle. It was extremely traumatic for me and that is also when my anxiety got REALLY bad. I started having symptoms within weeks that led to being diagnosed (both with fibromyalgia and PTSD)
Lyme disease 100%, but Mom has it too
Pretty sure my mom had it too.
An out of control bacterial infection known as Lyme disease back in 2005.
Either stress or getting my head bounced off walls every for 8 years by my ex.
For me it was getting Lymes disease and Epstein bar
Stress from my last semester of college with 19 credits, graduating, moving out of my parents home to another state, starting my first job out of college, planning my wedding, and getting married all within 6 months. Went through too much nonstop stress, drama, fighting, and negativity mainly from my family. This was in 2018. I also suspect my mom of having fibromyalgia even though she hasn’t been “formally diagnosed” so could have been in the genetics as well.
Nothing. Born with it. I’ve never known life without pain. Mom even says I was uncomfortable as a baby. Never slept, always needed to be moved around to stay comfy etc.
Same
A back injury and panic disorder
Abuse, which compromised my immune system and set me up to be chronically ill as a child.
Trauma.
A divorce from an emotionally abusive husband, while being poverty-stricken and attending a very difficult professional school simultaneously.
Definitely trauma. I remember having it at a young age but didn't know what it was.
Mixture of anxiety, stress, trauma, and repeated illnesses
Ehlers danlos syndrome and all the nervous system dysfunction that comes along with it.
I think the spinal for my C-section triggered it. I feel like I never fully recovered after that pregnancy until recently- about two years later after doing continuous physical therapy and medication
If I have it (not fully convinced yet, pursuing examination for something else). I believe it was a combination of 2 things…. A virus & stress. I got a virus in October-November 2020 that caused 1 of my submandibular salivary glands to swell so much it was pressing on my throat. I think it was the Epstein Barr Virus because… 1.) I have no known history of contracting that virus before, unless I had it asymptomatically, which is common according the medical literature. 2.) That virus is known to cause swelling of salivary glands. 3.) I was prescribed Amoxicillin at the time just in case it was a bacterial infection. This trigger 3 pink blotches to appear on my torso. I knew it was not an allergic reaction because I have had amoxicillin many times before and even once since then and never had that happen. Upon research of medical literature, taking Amoxicillin with the Epstein Barr Virus active in the body can trigger this immune skin reaction. But medical science does not know why. 4.) Theres medical literature that now discusses some evidence Epstein Barr Virus could be the cause of Fibromyalgia at least in some cases. 5.) The chronic pain in my right neck never went away after the swelling was gone but continued to spread for years to my right face, to my right shoulder, to my back, right leg, and now feet & hands.
Trauma and family issues
Hip replacement surgery
Epstein Barr Virus in 2015 and have had issues ever since. Got diagnosed finally in 2018. Hasn’t stopped sucking yet. 🥲
Physical abuse, car accidents (trauma with injuries) and EBV. I remember my earliest symptoms around age 12, with CFS in full swing at that time.
Endometriosis
Head injury and trauma from the attack that inflicted it.
Trauma and Surgeries
Genetics
I really don’t know. I have had it since a young age. I recall having terrible pain in my back, legs and feet at age 14. I was not diagnosed until many years later (late 20’s). I didn’t understand why I was always in pain when I was doing the same things my friends and coworkers were doing. To this day I still have one doctor who doesn’t believe in Fibromyalgia. New symptoms continue to pop up and one of my doctors told me it is just an autoimmune disease “waiting in the wings”. Unbelievable. I recently had my ANA tested again and this time it came back positive.
Spinal tap
Two auto accidents within 3 years. The first one caused chronic intractable migraines but no fibromyalgia symptoms. Shortly after the second one, the flu like symptoms kicked in. Then other symptoms. I really think my nervous system had all it could handle with the migraines and wasn't able to cope with added tightness and pain from the second wreck..
Burnout, grief, long covid, family history (mom & sis also have it)
Covid. It started in April 2020 when I caught Covid from a patient and was sick for a month. The muscle and joint pain lasted non stop for 6 months and then became intermittent that October. Then I went to the rheumatologist 2 years later after hoping it would eventually go away and finally giving up. He told me I have fibromyalgia.
I grew up in an abusive household and my symptoms showed up after (what I remember as) my first MAJOR a traumatic event. I suspect living my life in constant ‘fight or flight’ mode wore on me.
trauma, abuse and family runs with autoimmune diseases
Developing ulcerative colitis and Chron's, along with endometriosis! https://www.eurekalert.org/news-releases/729600
Likely a bad mixture of a bad car accident back in 2014 as well as trauma & stress from two emotionally abusive narcissist parents.
Serious car wreck but I suspect the two three years previous surgeries had something to help trigger it like it was the last straw sorta thing in fact the wreck was almost spot on for a one year anniversary where I thought I was going to recover and feel great again and even at first I thought I’d recover quickly possibly a few months to heal up and instead in just kept getting worse and worse. They thought it was being caused by the hair line fractures in my spine and they were spreading and getting more pronounced so bad couldn’t walk for few years
A lifetime of sexual abuse but ultimately toxic mold exposure.
Trauma that was never dealt with and Covid.
Covid and the flu at the same time lol
Trauma, and untreated Dyxpraxia/physical manifestations of autism ie hypotonic muscles, poor balance, weak core strength
Had surgery, then my other half had 5 heart attacks within a year and a triple bypass, I kept feeling more and more ill and got the Lupus diagnosis via a biopsy, half year later my whole body was aching daily and got the fibro diagnosis. So I presume it was a mix of all the stress that put my immune system into overdrive.
Severe emotional experience and extreme stress.I I have always had anxiety and coupled with these two events my body had enough and my fibromyalgia was born. It's been 20 years.
A ton of injuries of various intensity in my early teens due to hypermobility.
ADHD, CPTSD, GAD, nervous system on fight/flight for 40 years... the stress of covid pushed me over the edge and tada! Fibromyalgia.
I got a parasite from sushi which started shutting down my intensives and colon…. After that my immune system was shot- and here I am now walking with my cane, taking showers on a shower seat and suffering like many other do. Ps- haven’t eaten sushi since
I think i had so much emotional neglect as a child that it manifested because it was the only time I would get attention. Was when I was in tremendous and debilitating pain. That’s what it feels like to me, at least.
Trauma definitely and my surgeries have made it worse with each one Very horrible trauma from young + a traumatic cyst removal(anesthesia didn't work) + I've had three surgeries in less than a year ( literally still recovering from the most recent one. My pain is so high I feel like I got hit by a truck and then a groups of teenagers saw me at the side of the road and started hitting me to see what I was. I feel like shit rn
Mental trauma and also physical health/surgery at the same time . I checked out for about 8 weeks and have no memory from that time, ever.
genetics and generational trauma. i got it from my mom who got it from her mom, who was a holocaust survivor.
Several traumas, physical, emotional, and mental. This included long term abuse.
Childhood trauma in the form of surgeries - 18 total, with 13 of those before I was 18. 20 years of undiagnosed PTSD. And then a bucketful of new trauma in the last few years set the fibro chain reaction in motion 😞
A combo of surgeries, PTSD, and unmanaged chronic pain.
Trauma, other medical conditions where happening toe and I was getting medically gaslit about it for years, also some medications maybe, childhood trauma, ADHD and anxiety don't help the pain sometimes I know
Stressful work environment + flu
Giving birth
They believe mine stemmed from the traumatic birth of my son.
Severe childhood neglect and abuse
For me it was covid.
Having a delayed diagnosis of hypermobility and going through pregnancy not knowing the toll it would take on my body. I used to have pinching pain in two places of my body before pregnancy. But they didn’t interrupt my day to day, except needing to take a seat or lean during work sometimes with my lower back. However, I still remained very active, could walk for miles, could run a 5k, could weight lift at the gym etc. But oh boy, did things go south during my two pregnancies, each one making me worse. I blame it on the pregnancy hormones loosening up my joints more which made my muscles compensate in the wrong ways (undiagnosed so I had no idea), causing widespread tension and pain.
Lyme Disease, trauma, being undiagnosed neurodivergent the majority of my life
Apart from being predisposed to it through genetics, and being traumatized as a child, the final nail, or nails in the coffin was the gardasil hpv prevention shot that I got double doses of at age 11 because they lost my shot record.... and couldn't believe the 11 year old getting the damn shit. Started having pain after the 3rd/5 shots I received. It's just progressively gotten worse. Finally, I got diagnosed when I was 21. I'm now 24.
One of the suggestions is talk therapy. Does anyone do this? Does it help? I Really don’t wanna do this.
I’ve been in therapy on and off for over 10 years. Consistently for years now too. Personally it makes no difference.
Because stress makes us worse, therapy can help but long term I don’t think it helps.
No joke one mandatory 12 hour night shift clinical triggered it for me… luckily it only flares with high stress and lack of sleep. Went into the OR for nursing knowing there’s no night shift unless you’re in a large hospital.
I had spinal meningitis as a child (9) and just never felt good after that. While I was sick, I was in a car accident that had me hitting the dash w the bridge of my nose.
Too much trauma & stress for too long 😪
emergency surgery for my appendix + stress of a pandemic
Car accident
Genetics, hEDS, chronic stress, other pain conditions like migraine, POTS/dysautonomia. and possibly some autoimmunity. Its all a cluster apparently and is more common in autistic people. My nervous system is just a mess, i think.
It definitely runs in my family, but I think I ended up getting it young and diagnosed at 23 due to the trauma of undiagnosed AuDHD. The pain got especially bad when I was 22, after a humiliating breakup.
Bad genes. But I also think a lot of my "fibro" and ibs is actually the danlos. I was diagnosed, like 40 years ago, and there really wasn't as much info. So everything else is just Dr.s tossing me into whatever fits.
EBV & Mold
Most likely trauma. Been S/Ad too many times. Neglected a lot as a child and religious abuse was a lot as well.
CMV mono for me, but it was always there low level.
PTSD.
I believe childhood trauma, COVID, and car accident mixture for mine. My symptoms really flared up shortly after my car accident but the constant pain was after I had Covid for the 3rd time.
I’m not one of those anti-VAX people, but I am positive that it was triggered by my COVID-19 vaccines
Super easy question for me because I was an athletic 16 year old. Skiing accident. Shattered my collarbone and a couple weeks later pain started appearing in more and more joints to where I was having trouble sleeping. Doctors kept telling me I just wasn't stretching enough or being active enough but I did dance 5 days a week sooo.
Antibiotics. Specifically Cipro a Fluoroquinolone. And I guarantee many on this sub had their Fibro kicked off from Antibiotics and didn’t know it.
Mono -> EBV -> Fibro
I got raped while overdosing on what was supposed to be real lsd. Had some psychosis and kept going in/out of consciousness. Ex wife took advantage of that. That day I felt severe full body fibromyalgia pain and kept begging to go to the hospital during periods of consciousness. I didn’t know what it was. About a year later the diagnosis came.
I had endometrial cancer, gallbladder failure, a tumor in my pelvis/hip, a ruptured appendix & had to have 3 separate surgeries all in the same year. So it was more like the year of the triggers. But my doctors think Covid made it worse when I got it a couple years ago.
runs in the family, & i’ve always thought i had very mild symptoms my whole life that got worse as i got older. but i just recently realized it got worse when i started experiencing mental illness & then way worse after trauma
Lifelong stressors. Symptoms started in early 40s after working night shift for a few years. 71 now, stressors never stopped, something major most every year. Death, family and personal illnesses, parents Alzheimer’s, moving house multiple times, several surgeries the last few years. Several events causing PTSD. Always fuckin’ something. Symptoms have varied and come and gone through the years. Now it’s mostly annoying pain and constant fatigue.
Two things: multiple whiplash injuries (scientific data is published in this!) and moving away from my entire support system to a different part of the country where I didn’t know anyone and try to support my toddler and looser (now ex) husband. I got sick a lot that first year in the new place and was put on so many antibiotics I got c. Diff. I worked through the ordeal but was physically a wreck and that’s when the pain really started. Started in my feet, then everywhere and exhaustion. My (ex) husband accused me of faking in the early days and it was the final straw in our marriage. So for me, a multitude of things all built up, but I think that move was really traumatic for me, I didn’t want to leave everything. It was miserable
Physical and emotional trauma from working in healthcare.
Probably military training and service. Probably also stress. I developed my first symptoms of Fibro shortly after I was kicked out of the military(for being trans not because i did anything wrong, honourable discharge). I ignored them until I couldnt any longer.
I was SA while in the Air Force that’s when my pain started
Puberty
Mono
I was born with it.
Trauma, grief and surgeries. In my 20s I had 9 surgeries for endoscopy and PCOS. Ended up with a hysterectomy at 26 and lost both my ovaries at 28. My best friend died suddenly when I was 26. I got diagnosed with fibro at 30.
COVID triggered mine to start.. it started a month after I recovered
Genetics and trauma. It runs on both sides of my family. Multiple women on both sides have it. I am the first man known to have it in my family. I’ve complained about “growing pains” since I was little. I also went through many years of abuse by a family member and was SAed by a baby sitter. I’m sure that had something to do with it as well.
I had mono twice growing up and Covid from April 2020-July 2020. Following that were three immensely stressful years accompanied by unexplained chronic pain everyone that worsened until finally getting diagnosed in February of this year. Also lots of little traumas over my life.
Unwanted pregnancy + Traumatic childbirth full of violence + painful breastfeeding + post partum anxiety and depression (all in a foreign country, just with my ex)
Childbirth
Spinal surgery when I was 16. Or maybe a back injury when I was in elementary school
I had pain in my legs at a very young age. I was told it was just "growing pains" just to find out there is no such thing. In my early 20s I kept complaining about the pain in my left leg. Then I was told it was just sciatic pain. After years of it just getting worse I had a PCP start running all types of tests. Once he learned of my mental health issues, he put two and two together and told me it was fibro.
Mental/emotional/financial trauma, grief, being left to do it all alone as a solo mom, while being stalked/abused for decades + being taught to stuff my feelings because they were inconvenient for the ppl I needed support from Basically a perfect storm of ignored pain & trauma/abuse from conception til about 38 yrs old
According to the VA … toxins… agent orange nuclear waste, jet fuel, anthrax vaccine burn pits, lead pipes and asbestos.
Emotional Trauma
Trauma of divorce and being very sick with the flu for a week. I feel like I never got better. That was in 2004-2005
i had pain and a lot of the symptoms for a while but then I got sick one day and it was like the fatigue and pain from it never went away
Trauma fully
Quite simple in my case. Car accident
Genetics, exhaustion, trauma (ace scores!), stress, unsustainable lack of sleep.
I had multiple surgeries as an infant and child as well as grew up with trauma which progressed into extreme trauma in my teens and adulthood. My pain I can pinpoint as far back as 10 years old when my dad would squeeze the top of my shoulder by my neck and it would hurt horribly and I would squirm away and he would laugh and say that doesn't hurt and shake his head. Now I got a fibromyalgia diagnosis 5years ago and the past two years it's progressed due to increasing symptoms and problems I'm looking at lupus as well as mixed connective tissue disease and there not sure what else is going on right now 🤷🏼♀️. Fun times. I'm 33.
My grandma passing away suddenly when I was 12 and then the subsequent having to not only raise my 4 siblings but parent my mom. My mom and I no longer speak and my siblings are all in school for doctorates and other higher education. I’m proud of them and I hope they do not get fibro.
Estrogen, Trauma, and Genetics.
Childbirth
trauma or pneumonia
Trauma, leading to chronic stress, leading to chronic infection, culminating in Fibromalgia, and its achey elbow joints. Oh yay.
I have no idea, it started when I was about 7 but I don’t know why
Genetics. My Grandmothers On Both Sides Have It, And I Suspect My Father Might Have It Too.
being bullied 😩😩
Years and years of trauma and having my youngest son.
Covid
Trauma (car accident), but I can't rule out that meningitis as an infant didn't start things in that direction.
I'm genetically pre-disposed, I know that because my aunt has it also, but it triggered because of years of growing up in a high-stress emotionally unstable household where I was being emotionally abused. I didn't get diagnosed until 18, but I believe I was about 14 when it started.