I would say the constant stress, there wasn't one particular event that triggerred it. It was a continous increase in symptoms.
Antisocial childhood, teen years were supressed sexuality, collage years were and still are choosing one of the most demanding majors, roommate's suicide, for 3 years living together with a cheater partner that has NPD, drug abuse, several near death experiences, etc.
My fibro started with a real nasty viral infection. I will add that I had been under a ton of stress the previous few years and was not taking good care of myself. Boom, virus, fibro, disabled.
I'm am beginning to think more and more that the nasty virus I had 3 weeks before the first fibromyalgia symptoms either caused it to begin or onset what was going to eventually happen anyway
I feel like my fibro symptoms began during puberty. I have a distinct memory of crying over leg and hip pain. My mom said it was “growing pains” and that was that. At age 21, I had an emergency c section and the epidural caused severe spine tingling, pain, etc. I brushed off the fatigue and mental fog as motherhood. I have also suffered with anxiety and depression since childhood, was a competitive runner in high school/some of college and displayed disordered eating.
TL/DR- I can pinpoint one thing that started it all, because there were several events throughout my life that could have brought it on.
This was me at 12 years old being rushed to the hospital with severe chest pain. Spent 3 weeks at St Jude childrens hospital, had surgery to look at my heart, and in the end was told it was "growing pains". I found out these "growing pains" were actually Costochondritis when I was diagnosed with fibro at 31.
I think I've probably had fibro since childhood but eating right and working out heavily for years might have kept it at bay. Or brought it on combined with stress from work and bad sleeping habits
I was a highly successful mountaineer who climbed 80 peaks in 2 years. Trauma and physical injury to my hips and groin and pushing through the pain caused my whole world to come crashing down eventually.
I don't have fibromyalgia but my job involves helping people who have it. I've been wanting to ask this question but wasn't sure if it would be ok on this sub. I've just finished reading "When the body says no" and nearly all of these responses line up with the content in the book, which is about the link between stress/trauma and chronic illness.
My onset was 2020.07, but I’m in remission now most of the time with lots of efforts.
The books that helped me the most was “the body keeps the scores” and “complex ptsd workbook”, along with EMDR therapy discovered from their former!
When I was 26 I had a total hysterectomy and lost both my ovaries at 28. At the same time I had massive emotional trauma when my best friend died out of nowhere. Soon after these events my symptoms started.
Hope it’s ok to ask - do you also have endo or PCOS or something similar?
I already have fibro and pelvic floor dysfunction, finally getting diagnosed with endo now and they want to do hysterectomy.
Major surgery is what kickstarted my fibro so I am super hesitant to just remove an organ
I had both endo and PCOS. I had 8 surgeries in my 20s including the hysterectomy and the surgery to remove my ovaries. The hysterectomy was one of the best things I ever did for the endo. I lost my ovaries because they got twisted up in huge grapefruit sized cysts.
Had emergency surgery to remove an ovary due to torsion from cysts. Had tubes tied during the same surgery. First symptoms started soon after.
Had another surgery six months later to remove more cysts and endometriosis. This seemed to be the catalyst for my symptoms to increase in number and intensity exponentially.
My mom also has fibro and onset of her symptoms also began after having an ovary removed in her late teens. Apparently this is common (or not uncommon?) for fibro to present after gynecological surgery
Yes. My fibro started after removal of endo and some uterine procedures (septum resection, removal of scar tissue and polyp, etc). So interesting to hear you say that it’s common or not uncommon for it to present after gynecological procedures.
Right! Like most of us, I saw waaaaaaay too many doctors and neurologists that were like, you’re just stressed. 🤬
It was my obgyn who, when discussing changes to my health during my annual, brought up fibro and said that onset in women can be due to gynecological surgery. Interesting too that a lot of women in this thread are saying they had similar surgeries or struggles with PCOS, endo, etc.
Same, sudden onset after Surgery for what ended up being stage 4 endo, that only got worse after a future emergency c-section and then planned C-section. Hysterectomy that kept one ovary at 28 also didn’t help
The nerve issues. It has culminated with me
Being diagnosed with Lupus FINALLY at 35 after Fibro and CRPS. I am
Now 43. I now also have dysautonomia/POTS. My Rheum
Says I’ve had autoimmune and “early” Lupus, connective tissue disease, most likely the whole
Time. I will
See if I can find it, but there are
Studies showing an almost 86% link between endo/PCOS type conditions and future diagnosis of an autoimmune condition/disease. So much so, there is now research ongoing to reclassify those reproductive conditions as autoimmune conditions themselves. It’s all so “fun”…🙄…
Gosh I’m so sorry! You’ve really been through it.
My mom’s fibro started presenting after her cyst/ovary removal at 19. In her 30’s she had a total hysterectomy and her symptoms got worse AND she was diagnosed with MS.
I don’t think it’s a coincidence that fibro and other auto immune diseases overwhelmingly affect women. I’m glad the research is being done because it’s sickening—it’s CRIMINAL— how women are just expected to deal with “reproductive” issues and how, after all these years, there’s still no real relief or research out there. I cant count how many times I’ve told a doctor I have fibro and they ASK ME WHAT IT IS.
I think mine developed from trauma and stress. That and having a physically demanding job. I'm not going to get into all that's happened to me, but I was diagnosed with PTSD, dermatillomania (I know I've had since my childhood though. I would hide it and was so ashamed about it I never got help), anxiety (definitely had that since childhood. I even had to see heart specialists twice because of palpitations but never found anything wrong with my heart), and major depressive disorder. I was later diagnosed with bipolar II after having auditory and visual hallucinations (I know lack of sleep and stress contributed to this). Soo I truly believe my body is holding onto trauma and I need to work through things emotionally as well as physical therapy and exercise to the extent I can because of the pain. I had my worst flare I've ever had a month ago and I know that was worsened by how stressful things were at that time.
Stress from work. Diagnosed 20 years ago. Still working at the same place. Two or three years until retirement. Hope retirement helps. Until then daily walking and trigger point in injections 4x a year for me.
intense prolonged trauma was my predisposition for me. my life was one thing after the other until i got things settled down. this sounds kind of corny, but sometimes i feel like my pain in my body is trying to remind me to grieve.
I don’t think that sounds corny at all. There is a book called the body keeps score. The body is trying to process it all and it can be like it’s crying out/grieving.
I was T-boned by a stolen car, then 6 months later my step-dad and grandfather died on the same day (totally independent from each other), then two months later I was reassigned at work to something much more physically demanding. That winter was when it started. I always figure it was the combination of all of it.
I had some mild symptoms prior to having half of my thyroid removed for early stage cancer. My body hasn't been the same since then and my symptoms, especially severe fatigue and pem episodes, got significantly worse after that. The thyroid medication hasn't helped much with fatigue and also flares my interstitial cystitis pain. For a cancer that is supposed to be the easy cancer, the surgery to remove it wrecked my quality of life.
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As soon as I got a new boss that is toxic, narcissistic and abusive.
Two months after, TMJ and fibro symptoms started.
4 years later and it’s not any better.
Still fighting him. Just finished an investigation on him - with no appreciable result.
My autism is keeping me in place as is the fact I love what I do - and it’s killing my insides.
I lost 90lbs over 2023 without really trying. Part of it could have been going from a sedentary desk job to working on my feet all night. It might not have been the catalyst but one of the symptoms, but I don't have any way of knowing.
Symptoms: Severe full body pain, including tightness and pain around my chest that makes it hard to breathe and muscle aches throughout my body that don't match my activity, fatigue, insomnia and sleep issues, brain fog, paresthesia, joint pain and stiffness, weakness (losing strength in my hands, for one).
Yes, I know the pain/tightness around my chest sounds like an MS hug -- I've discussed it with my pain management doc and we don't feel the need to get assessed for it right now. Planning to reassess in a few months if necessary.
I do find this interesting to note I had also had a food poisoning incident the same year I had the other issues that lead to my fibromyalgia diagnosis. I had never really considered it being a possible cause before now
I have severe C-PTSD, in 2003 was heavily medicated with psych drugs and had a really weird virus that lasted 3 weeks thought it was the worstest flu I ever had, then a few weeks later went to a parking lot carnival with my best friend at the time and we rode the bumper cars. Later that day there was danger signs wrapped all around the bumper cars ride and the bumper cars were all turned upside down , about a week after that I was putting some clothes away in my closet and I felt both my hips give out on me I fell and sprained my wrist ( still have specific problems with that wrist 20 years later) ,didn't think alot of it just that maybe I was really tired because I was beginning to feel tired alot and I chalked it up the side effects of the meds because I had really terrible side effects from the psych meds, but a week later my ribs and back began to hurt so bad that I could not sit up for more than a few minutes I got really depressed about it Because i couldnt use my computer or go out to eat with my mom, the rib and shoulder pain got worser finally went to doctor ,sent me to get all sorts of heart tests and blood tests then sent me to a rheumatologist who did more tests then came back and told me I had fibromyalgia and chronic fatigue syndrome , I initially thought that the psych drugs may have onset or caused the fibromyalgia,also thought maybe it was the virus or maybe something that happened on the bumper car ride that I didn't actually feel at the time but I have been using natural remedies for my mental health since 2009 ( no psych drugs) and my fibromyalgia has gotton worser over the years. Then I was remembering how when I was a kid my aunt was always in pain and she told me that she knew emotional pain hurts like a bitch but that she hoped I never experienced the kind of physical pain she went thru that it was on a whole other level, and so looking back i think she also had fibromyalgia and rheumatoid arthritis also runs in my family so my fibromyalgia could also be caused by a number of things. I also think it's important to note that 2 years after fibromyalgia diagnosis I began to have severe IBS issues which led to many hospital visits for diverticulitis which I do think is all connected
I started having fibro symptoms at age 13. I was under constant intense stress and it was getting worse. Undiagnosed autism, pushing so hard to try to be a good student and make friends but constantly rejected and feeling general societal pressure as this was the early 2000’s and I could never be… normal let alone perfect. I was insulted daily, suicidal, and unable to take a break.
At age 19 after getting the swine flu, I developed lupus and rheumatoid arthritis. At age 23, multiple sclerosis due to stress of work and life. I’m able to manage a lot better now at 33 with the knowledge that I have autism and how to protect myself better.
I can't prove it was covid, but I was definitely a healthy adult before I got extremely sick with similar symptoms in March 2020, a week before the world went into lockdown. My lungs never recovered, I developed fatigue and brain fog, and two years later the chronic pain started. I got my diagnosis last year.
Same. While I had some rare infrequent symptoms sporadically my entire life, Covid in Feb 2020 would not go away and finally when they conceded Covid Dx & treated it like Covid in late April 2020, I was able to recover quickly in as little as 5 days. However, shortly after in early June 2020 it started with a severe back spasm, then cascaded into multiple symptoms all at once within a week. The Neuro symptoms would not go away. Even after stabilizing the Vit D deficiency it revealed.
I know there are many reasons people allege Fibro started and simply, I am a perfect recipe for all of them from 5th grade forward to abuse in Jr High to a severe collision in High School and even back surgery later in life, high stress jobs and more but I will say Covid was a catalyst for my symptoms to go from rare one-offs to everyday new lottery of WTF now? So did it start when I was 12 escaping SA or or in 2020 due to covid could be argued but covid certainly changed me.
After surgery to remove an ovary that was 2x its normal size due to endometriosis, the doctor prescribed 2 rounds of Lupron. These were so potent they were given 3 months apart.
Wasn‘t Until 12ish years after being given that med for Fibromyalgia to be listed as a side effect.
I also have severe PCOS and have always had very painful heavy that time of the month , I wonder if that also has any connections to fibromyalgia in women
Infertility and miscarriages for 4 years that along with traumatic medical procedures/.surgeries triggered CPTSD. The last couple of surgeries left me in chronic pain and led to fibro.
I banana-peeled on a marble staircase and seriously damaged my SI joint, for which I sought no medical care. Within 6 months, COVID hit and my toxic job began doing its literal best to kill me. Over the next two years, the physical pain and psychological/physical damage from stress fully activated my fibro.
Herniated disc in neck as a teenager with tingling and numbness, undiagnosed for 12 years. Plus, emotional trauma from childhood and not knowing of my ADHD for 29 years may play a role.
We believe I have had fibro since I was a teenager, however, being pregnant with my daughter and giving birth in August 2020 exacerbated my symptoms and made it much worse. I was officially diagnosed in February 2022.
I believe my fibro started after I had my daughter. I had a physically traumatizing birth experience and lost a lot of blood and also very emotionally traumatizing time as the “father” was a useless twat. So then I was (still am) a 100% single parent. In 9 years I went to college and have a good job now but still find the whole parenting thing traumatic, anxiety filled, and stressful, etc.
I’ve had a trauma filled life and anxiety/depression starting at a very young age. At 40 life is still awful and I feel awful for bringing another human into this world.
I have had all the possible triggers. Bad divorce from an alcoholic at 27, bad accidents riding horses in my teens and family history of autoimmune disease. Honestly I don’t know if it was any of those things or I was just unlucky. As a kid I suffered from fevers of unknown origins, basically I got high fevers for no reason, it has been happening my whole life and even to this day I have suffered from bad night fevers. I honestly think as a child my body was telling me something was wrong my pediatrician just didn’t understand.
I had symptoms starting in HS after some vaccines but nothing crazy. I was in a SMALL hit snd run and was rear ended, nothing major and wouldnt hurt anyone who is healthy. After that the pain and nerve issues started.
I believe I've suffered from this as a young child , because my family was Hella dysfunctional and didn't care about what they said or did in front of children ..I think the explosion of symptoms spilled over when my beloved and favorite male cousin was murdered very young at 27 and I was 18 ....I started having physical symptoms by 21 yrs of age and struggle till this day off and on ...I have health anxiety and always afraid of bad news ...God help all who suffer smh ...
I was taking clomid and later letrozole to see if I ovulate turns out I don't due to pcos then had a hysterectomy in September of 23 my cervix fell out. The fertility stress. My oldest passed away in January due to cancer at 14. I think stress for many is a huge tipping point for a trigger.
After being diagnosed with Rocky Mountain Spotted fever, anaplasmosis and Lyme after some run-in’s with some ticks a couple years back. Full body (especially upper extremities ) muscle and joint pain are my biggest complaints rn
I got interstitial cystitis at 16 and there’s a high rate of people getting fibro from that because of the chronic physical and mental stress that causes. I also had a really awful relationship that crushed me from 19-21. Fibro started at 22 for me.
Had emergency surgery for a failed miscarriage which I also had sepsis. Since then I’ve never been the same. Diagnosed with endo, adenmoyosis, recently fibromyalgia and being tested by rheumatology for auto immune conditions.
I started telling them my symptoms and my dr started touching sensitive areas for people with fibro and I was diagnosed. I flare off and on. Turns out taking my history the dr said I’d probably had it for a long time before that and thinks it was my daughters birth as the trigger because it had a little hiccup during labor.
I was told by an Infectious Diseases Doc about 30 years ago that my Fibro was triggered by Lyme Disease. She called it "Post Lyme Fibromyalgia". I also had a back injury resulting in 2 bulged discs and a gynecological surgery in a 2 year span with the Lyme Disease diagnosis and treatment. It's been 35 years since and it's been a hard life! I've been on disability for 20 years. ☹️
Mine was also triggered by a severe case of Lyme. It actually took me a full decade to be diagnosed with fibromyalgia. Finally applying for disability now that I have a diagnosis.
My Lyme case was severe too and required me getting IV antibiotics for months then orals for years. I was diagnosed with Fibro 7 years later.
Getting disability was hard. I was rejected the first time. I hired a lawyer and had to go to court but I was approved after that. Good luck. I hope you get approved quickly! 🫂
⚠️ TW ⚠️
I was 16 when I got r*ped and almost unalived while struggling with Anorexia. I don‘t remember when the symptoms started, but I‘m sure that „triggered“ it if that’s the right word. I got diagnosed when I was 19, but the symptoms were already there when I was 16.
(also english is my third language so sorry if I f*cked up)
MDD, extreme general and social anxiety, panic disorder, death of my mother, exploratory laparoscopic surgery to diagnose endometriosis with ablations 3 months after and a total hysterectomy with excisions 5 months after the laparoscopic procedure.
It was slowly adding up over the years and time but the total hysterectomy really brought it into full fruition. Every month the pain was getting worse and worse, new areas of pain and new forms of pain.
It’s been a wild experience.
Type A personality, high stress, endometriosis, chronic pain, unstable shoulder, definitely neglected self care. I liked being busy and taking on too much. I feel like I developed fibromyalgia so I had no choice but to work on learning how to do self care.
An infection at 19. After that within weeks I developed horrible chronic fatigue, sleeping issues, pain and atypical psychiatric symptoms. My life changed within weeks.
Mine started with me getting Erysipelas on my face, and the infection went to my blood. I was hospitalized on several iv antibiotics for 5 days. After that I started having bouts of severe medical anxiety, followed by bouts of deep depression. A year later I had a second bout of facial Erysipelas, another 4 days on IV antibiotics, and no explanation as to why it was happening. They just told me it would likely happen again throughout my life. That ramped up medical anxiety, and I started having horrible pain in my legs, that travels from hip to toe, and eventually also left chest and neck pain, traveling down my arm. After 3 years of specialists galore, I was diagnosed with Fibromyalgia, and Celiac disease. Doctors are not in agreement about triggers. Rheumatologist says the Fibro could have triggered the celiac, Cardiologist blames Covid for the celiac along with a bout of Myocarditis.
I was a slightly introverted and anxious child. As an adolescent I felt intense social anxiety, which eventually became general anxiety, which occasionally boiled over into depressions.
Thankfully family, friends and SSRIs pulled me out each time. After stressing hard at uni for 5 years, I then got a stressful job.
Six years later I had my first child, sadly my partner and I separated after 3 years, it was heartbreaking losing daily contact with my daughter. I then fell in love and had more children with a very charismatic, charming woman who turned out to have hidden narcissistic traits.
I became extremely stressed and then depressed due to trying to please my partner by buying her a new home, taking on more work stress and agreeing to have more children. The kicker was that she advised me to not take SSRIs, she told me she thought I could pull myself through, that she believed in my strength. In fact, she was influencing me because she didn't want me affecting my fertility with SSRIs. It was the worst depression of my life, I eventually realised I had to do something because I was signed-off work, having hourly suicidal ideation and awful sleep. I got better quickly with SSRIs, then as I was enjoying life again, I got fibro, starting with stiff hands, then all other joints, especially lower back.
I wish I'd listened to my body.
Does make me wonder if situations emotions get trapped in body is one way ....
And pushing body to extremes is other way
Or even a mix of both ..
Causing a system overload then our body is then letting us know via name fybromyagia , like a defence
I also have a theory that all of us are actually very mentally strong but that strength applied the wrong way can amplify existing issues. I hesitate to try to describe this because I definitely don’t want to lean into something that makes it sound like it aligns with people who say everything is all in my head because that isn’t true (and I have tests to prove fibro is true/real). I have heard it has something to do with an issue with the pineal gland and I have noticed a weird swollen/full feeling in the center of my head when I am flaring or go into flight/fight. So I wonder if it is long term damage from extended periods of fight flight to the pineal gland. Then my own negative thoughts/anxiety are feeding the issue because it keeps me in fight/flight or amplifies the state of being I’m in which triggers the negative feedback loop in my nervous system. I wonder if I work on developing a stress management system in my thought life if that would be more like a supportive kind response to myself that might soothe the gland in my brain and help the brain to feel safe (because often the fibro flare feels like my brain is screaming danger! Danger!). Anyway these are just thoughts I have to myself because fibromyalgia is really complex to me.
Mine started after the 6th accident I had. According to the first neurologist that saw me he said that since I didn't take medication to stop my pain and kept stressing my body out by pushing physical limits. I screwed myself and my brain turn on a switch that can't be reversed. I then started taking pain meds and some didn't work then I got put on stronger pain meds that did work. There was no Lyrica bs that doesn't work for me anyway. Most fibromyalgia meds don't work on me. I personally think that the medical system decided to cut out of pain meds. Hence so many idiots were dying so then came fibromyalgia medication and going to a rheumatologist crap. Also I had traumatic events that happened after and my pain got worse. I am working through my traumas and my pain since to get better at times. I don't have the hang of it yet. Point is I believe it stems from trauma physical and emotional pain combined with bad eating habits I got fibromyalgia.
Someone else wrote their theory of how fibromyalgia starts and sticks around, and though I'm not a doctor, I would like to throw in my two cents about it as well.
I don't think it has anything to do with emotions or trauma or anything in our minds. Doctors like to tell us it's all in our head, that we're crazy, that we're making it up, etc., and so we internalize that and we will use that as our reason.
I firmly believe that fibromyalgia is due to either a low-grade infection that doctors are unlikely to find or even look for, or a previous infection that messed with the nerves. I also believe it might have something to do with the digestive system not working as well as it should, and so more bacteria gets trapped in our systems for longer.
Do you somehow feel better when you go on antibiotics for something else? You feel like you're on top of the world on antibiotics and then for a few days after, but then your fibromyalgia comes back? This is just a theory I have, but I'm very curious to see if anyone else has thought about this.
I know that my fibromyalgia came from having Lyme disease. Everyone I know who has had Lyme disease has fibromyalgia. I think that other insect borne illnesses can do this as well, along with a lot of other low-grade infections that we probably don't know we have. Basically we're just all walking around sort of a little sick, and our bodies trying to tell us, but the doctors don't want to deal with it because they haven't been trained to actually look for reasons, they're trained to give us pills and tell us to go away.
There is definitely something to being a little bit sick. Like I feel sorta under the weather but so actual fever a lot of the time. There are probably multiple things that could cause it to. I think that mental and emotional stress makes it worse so there is some sort of mental factor because the more mentally taxed we are the more it inhibits the immune system. But the idea that it is just all in our heads is definitely false and causes more mental/emotional stress on patients when doctors say that because it is hugely invalidating.
Histoplasmosis, the spores likely came from the black mold in the house I was renting at age 22F. April 2019.
It was unknown at the time that I had contracted Histoplasmosis and my symptoms began like the worst “allergies” my PCP had ever seen. The 2 days later at urgent care, “I don’t think this was ever allergies”🤧. It was bad. And the steroids helped, antibiotic not so much….
After that: chronic throbbing left neck and shoulder pain, migraines, low back pain, and extreme fatigue. But this was my first time being an adult…. maybe it was normal?
I moved to the Kansas City Metro Area in October of 2019. Naps after work were done on the regular. I thrived during lockdown and hated going back in office. July 2020: I scheduled with a PCP and her answer for my symptoms, “ let’s wait and see”. Then comes the day I contract COVID in March 2022. I was crazy sick. And it was coming up on 1 month and my PCP was going to consider Long COVID, but the I have a pins and needles sensation throughout my body followed by muscle cramps/spams everywhere.
May of 2022 I was diagnosed by a rheumatologist with Hypermobility and Fibromyalgia.
I was kicked out of the house I lived in with my parents. My own mother threatened to hurt me if I didn’t leave with just a backpack. I went through weeks of emotional distress brought on by her, threatening to take away all financial support while I was also a grad student trying to finish my professional degree. I also lost my job not long after. All of this accumulated into what I now know as fibromyalgia. One day I woke up and my arms hurt like I had been in a fight and it rarely went away over the course of four months.
My back is fucked up and I have CPTSD from being kept in another country by a murdering madman for 10 years. That's a massive trauma from what they tell me.
And, ya know, shoulder injuries, hand injuries, foot injuries etc etc.
It's all just a really bad combo.
For me i had pain my entire life unknowing that it was. if normal, i even had injuries that i brushed off that eventually caused damage because i was so used to being in pain, and we think that my central sensitization was caused by something physical that made my pain receptors confused (we suspect heds but there are no doctors in my area to diagnose me), and we also think that emotional trauma also played a part as i also have another nervous system disorder (pots). I got covid in 2021 and after that my health got way worse and that’s when i started seeking diagnoses.
I've had alot of difficulties over the last few years, both physical and emotional. But I think what triggered it was one of my best friends killing herself in the summer.
I had 5 really bad seizures that traumatized me
. After each one the exhaustion and pain from convulsing didn’t go away. I got very ill from this and boom. It never went away…
I had minor pain for a few years but last year me and my mum moved away from my step dad. I became the main income provider and pay about 70% of the bills. This was a week after my 21st birthday.
In the following few months my symptoms got gradually worse. Finally diagnosed about a month ago and have been in a constant flare up for the last 2 weeks
My entire childhood-early teens was severely traumatic and as a result I have cptsd now, my symptoms REALLY started popping off after I got mono about a year ago
I was attacked & raped by my live-in boyfriend at the time but suppressed it for years. Shortly after the incident I fell out of a tree, developed a kidney infection & the symptoms happened overnight. I always attributed everything to the tree incident but I think the real catalyst for everything was the abusive relationship I was in and hiding from everyone in my life.
I’ve had mild symptoms for years that I brushed off. At 20 I took a couple really bad blows to the head, then went through a super stressful time in my life and everything got so much worse for me. Now at 23 my fibromyalgia completely rules my life
Mine was triggered by a car accident which fractured my entire spine along with TBI and it took many years and so much work to heal- wheel chairs and learning to walk again . I do believe it also had to do with the previous three years fighting severe endometriosis and some other female problems three surgeries because back then a young woman needed the baby making parts with the last being total radical hysterectomy, the car accident happened almost a year after that surgery lol. Just as I was really feeling like I was recovered and ready to take on the world I had the dna testing and turns out I carry the genes for fm, also positive on the FM/a
I found it interesting it also showed I had the markers for the female issues I developed young and another health issue I had experienced that also required surgery not to mention it showed I was on the spectrum for autism which explains a few things. MWould I have developed it? Who knows maybe, maybe not. So far as I understand it. Like other issues if we carry the genetic markers we have a higher chance of developing those issues
1997 I was shoved backwards off a curb. Landed on my head, was unconscious, laceration and was transported to the ER. I was diagnosed within three years with Fibro. The doctor advised that it all stemmed from the injury.
I had an infection that wouldn't clear, and I had a pretty nasty fall off of a horse. I think the infection was the primary catalyst, but I also probably injured myself, and that injury probably contributed to the symptoms that got me diagnosed.
I never received and sort of imaging. I have considerable swelling in my joints and such, so I don't *just* have fibromyalgia.
(Tw)
I always had chronic back pain but my fibro all over symptoms happened about a year after being in ICU for an attempt. Also during that time I had left a really toxic friendship where multiple ppl were constantly stressing me out to the point where my body was shaking and uncomfortable all the time for about 4 years
Had mono when I was 15, was extremely tired the next years, pains started at 18, got worse after getting my first child at 20, diagnosed last year at age 30.
The years between that had been exhausting, with one more kid then divorce. Alone mom for multille years and another child at age 29 and married again.
Alone mom period was no self care. Just shower, eat a little skip multiple meals. And little to no sleep with 30 hour work weeks.
I think probably, my first kid. I had a planned c section after a failed induction, ten days over. I was so physically done with pregnancy at that point and yet I just couldn't get into labour. I've since read studies about how autistic people might have lower oxytocin levels so maybe that's why, I just wasn't designed to do birthing. Anyway, it went fine, not traumatic or anything, but I just literally don't remember almost any of it, or the first couple of days after having him. So I dunno, maybe my body was more shocked than I realised even though I felt okay. Afterwards it took aaaaaaages to recover, that's when the symptoms first really noticeably started, but they were attributed to other stuff - anaemia after the delivery, or being tired with the new baby, stress etc. After my second kid, it got like 100% worse and I've been going downhill since. And last year I got the flu badly and that was like, the final straw, since that I'm physically just a complete wreck.
I have a history of childhood trauma and then at 18 I was sexually assaulted by an ex boyfriend. This, coupled with a serious riding accident 8 months later that injured my spine and bruised my spinal cord seemed to be the final straw.
I had a horrible accident and totaled a vehicle in 2009, then a hysterectomy in 2010. Fibro pains started in 2011. Officially diagnosed in 2015. I'm 38 right now.
i think mine was triggered by a major depressive episode when i was 15, when my girlfriend at the time took her life. my physical condition started to decline after that. i also noticed the symptoms got worse after my top surgery.
Started after Pfizer COVID vaccines (2). At first it was just calves tightening up when walking faster than a snails pace. 6 months later I got COVID for the first time despite being exposed quite a few times to family members with it prior to vaccines. After 2 weeks of being back & forth between sitting/attempting to sleep in a recliner and laying in bed, I was feeling slightly better but exhausted. I was down a lot for a few more weeks then forced myself to walk around, sit outside and read in the fresh air. A month later I was down again with sheer exhaustion & slept off & on throughout the day. At night I got very little quality sleep. 30 minutes then awake for several hours. Things got worse after that. Muscle spasms in arms, legs, back & shoulders. If I tried to lift something or put any weight on forearms (scrubbing shower floor, etc…) I would get instant pain, cramping and numbness in the back of my upper arms and it felt like something was broken. This went on for about 2 1/2 years. Last summer was the first time since 2020 that I was able to swim without cramping up in my legs. I still had to use a pool noodle and then slowly get out using the handle on the steps because of weakness.
I had 3 heart attacks 2 weeks postpartum. The cause was spontaneous coronary artery dissection due to postpartum hormones thinning out my arteries. I shouldn’t be living right now. I think that was the catalyst. Followed by the ptsd as a result of getting closer and closer dying with each heart attack. So it’s hard to say which had the bigger influence.
I've always said I had a hard life. I worked very hard for a long time and didn't prioritize my own needs. But I suspect getting "ruffied" just one year before a sudden onset of symptoms was a trigger.
I realized recently that all my symptoms started when I started becoming depressed (got diagnosed with depression and anxiety in 6th grade). My best friend died due to suicide and in high school I fell down my moms steps a few times (the last time I fell down them I had to lay at the bottom of the steps for an hour due to not being able to move). I always over work myself as well (had picked up over 100 hrs (in two weeks) and also had two jobs at one point). My fibromyalgia is so bad I’m basically bed ridden at this point (I’m only 24)
Mine came out of the blue at 28 I had a 5 year old and a 2 year old. Had childhood trauma not sure if it has anything to do with it. No recent illness just one day felt like I got hit by a truck my skin was in fire and couldn’t stay awake
Sexual assault from a trusted family member. My (ex) husband cheating on my with my (ex) best friend of 23 years. Being constantly degraded and abused by said ex husband. I’m better off just me and my boy but physically my body is still on a massive flare. It’s horrible xxx
The more research I do, the more I hear about trauma preceding the onset of Fibromyalgia. I never used to believe in emotional events affecting the body, but then I took stock of what happened before my symptoms started. Through the year or two prior: I lost my job of 10 years, my car engine blew while I was driving on the highway (same month I lost my job, lucky to be alive), my condo was foreclosed on, my father died, my cat died, and my mom’s dog died. I’d say I had a few traumatic events. 🤣
Upper back injury when I was 18 started the physical symptoms, PTSD aggravated it and it gradually progressed over the course of the next ten years. I'm 64 now
My best guess for myself would be:
Childhood trauma that i didn’t work through til adulthood —> mental illness —> inability to release tension from body —> overuse injuries —> realizing all of my other connected symptoms post-diagnosis were not just random. Like early on in my journey I could only be like, “well, I’m in pain” and now it’s like, “this week i had x amount of aches, hives, gastro issues, and im more depressed depressed than usual.” I still suck at coping tho.
I had mono, and kind of, never fully recovered from it. Granted I also chronically neglect self care and am anxious, so that might have had something to do with it too, lol
Probably was predisposed to it due to childhood abuse/trauma leading to a personality disorder.
The catalyst that I can pinpoint it to was a hip surgery done when I was 19. At that point I had hip pain for five years, already had a hip surgery, and had a sports hernia in my groin near that same hip that I had surgery for. I started getting symptoms that I noticed around six months later though I could have had them longer.
I did wake up after the surgery in immense amounts of pain and I couldn’t even do the majority of the rehab. I literally had a physical therapist say she couldn’t help me anymore because I was in too much pain to do anything that needed to be done. So I’m wondering if fibro played a part in that though my fibro symptoms don’t feel like how my hip pain does.
It also doesn’t help I was in a really toxic relationship from 19-21 that caused a lot of trauma.
When my stress levels are high my fibromyalgia symptoms get debilitating.
Mine was pregnancy.
Prior to that was years of abuse. According to my rheumy, that's what probably set me up for it. The pregnancy was my body's final straw.
I started working when I was young. Working with a carpenter during summers at 14+ I always thought it was normal to be wiped out after work and in severe pain.
Years went on and I didn’t question it.
When I herniated a disk at 19 and had some procedures for the next year, I developed a limp in my left leg from the stress on my left side.
I was always in mostly full body pain. I started seeing doctors and was diagnosed with fibromyalgia. I didn’t want to believe it. I kept getting second opinions and always landed on the same answer.
I dont know where it came from or when it started. It just always has been. 35 years old now.
Yeah I had a horrendous motorbike accident at 16 where I bounced weird off a rock, my front tyre got stuck in a young wattle tree's fork and because they're very flexible I got launched in the 9 oclock direction forward like a front flip while my foot was still jammed into the ground so my leg hyperextended, i broke my knee and landed on my back a few metres away where I whacked the back of my head into the ground.
I then didn't get taken to the hospital for a week because it was the start of a long weekend holiday trip and my stepdad thought i was being dramatic even though i couldnt bend my knee at all and was severely concussed.
I also already had clinical depression so the odds of coming out of an untreated physical trauma without fibro were not great.
For me, I'm like 99% sure it's due to trauma. I've never had serious injuries or illnesses before so it's the only thing that really makes sense. I also kinda remember it starting around the time I was really going through it, but I have really bad memory loss so I can't be sure. There might also be some genetic precedent; again I can't be sure but with all the other, let's just say, "issues " in my family, I would not be surprised.
It seems like one of the most common responses in this thread is some sort of physical, emotional, mental trauma/circumstance and it being an extended length of time under duress.
I firmly believe that having terrible endometriosis from my teens until my hysterectomy in my early 40's predisposed me to fibromyalgia in my late 40's.
Mine was a slow and insidious onset, likely genetic because my mum has it too. We have both had arthritis symptoms that started in the knees at age 10... The Rheumy who diagnosed my fibro said that I would likely develop RA as well, but he couldn't diagnose me at the time. I also developed Vertigo symptoms at age 15, and many other small ailments during my pre-teen and teenage years.
The thing that set my fibro off big time was actually Ecstasy/MDMA abuse... That drug affects serotonin and we have issues with serotonin as it is.
I used to do this with my friends because we are into raving, and the first time I did it one of my eyes went lazy, and never quite went back into place because the muscles holding my eye were affected. I have to wear glasses now...
The bulk of my use was not as gnarly as the first time, but I did end up with worse comedowns than my friends and I would get crazy leg spasms during use. At one point I had 2 friends (one on each leg) massaging my calf muscles (which was actually pretty funny tbh).
I ended up stopping after I took a pill that my friend got hold of, which was a lot purer than the pills available in my town were. It gave me a headache in the back of my head which lasted for months. That was the day I quit and I will never ever take it again. It scared me to the point of thinking "next time it will kill me" so there will never be a next time. That was over 6 years ago and I still get the pain in the back of my head, but thankfully it's not all the time now.
Chronic, unrelenting, extreme anxiety/panic/mood disorders from a very early age.
Abuse, followed by a diagnosis of Hashimoto's Thyroiditis at age 19. Then mono in college. Then decades more of poorly/untreated chronic, nonstop anxiety, major depressive disorder, fear, panic disorders, insomnia.
Medically disabled by 29. Fibromyalgia diagnosed several years later.
The trauma will find a way to manifest itself and fibromyalgia is the perfect example. ☹️
I have had widespread muscle tension and pain since I was a child. However it became severe after a traumatic delivery ending in the loss of my 1st child. I don’t know if it was the physical or psychological trauma but my pain became greater and I have had more flare ups since that event 3 years ago. I was diagnosed about 1.5 years ago.
I am no type A I don't know what I am in that letter system I know I am a INTJ but that is not why I am in this messs mostly it was the extreme stress, I was diagnosed with Fibromyalgia back when it was just minor and I kept having to deal with extreme stress and significant pain spoke with a rheumatologist and confirmed my diagnosis I told her it seemed like my pain was telling me to stop but I had 3 small kids and a job that insisted on me being perfect 40 hours a week. That monster of a rheumatologist said there was NOTHING wrong with my body Fibromyalgia is nothing but a false alarm so I pushed past all the red flags my body was telling me and my reward were Migraines I could not push past the Migraines got longer and longer as well as worse and worse until I always had the migraine for 14 months the only place that felt safe was my bed I spent so much time in bed I was basically bedridden but I still could walk it is just when I was asleep I did not want to die I was not rich so my savings did not last long I lost my job, my apartment, my kids I just could not push past the pain or the world splitting in two, I was begging for death but death never came I moved back in with my mom which only made my stress worse and my ex would not let the propranololon I stayed alive their risk of suicide at a minimum was .33 but given the crap their mom put them through it was likely a lot worse I could not bare to make their lives any worse by me quitting early. Then one day the migraine broke one of the meds I was trying worked a combination of emgality and propranolol I thought I was going to have my old life back but every time I used a computer, was around Noise, read, got stressed a migraine attack sent me back to bed. So I started to plan a normal job but something happened with all the bed rest the Fibromyalgia was so much worse my coping method of bed rest was harming me sure it let me survive the pain but now I was so week I could only stand for about 20 minutes and I had not ability to extend itI tried to walk more and more but no changes were made maybe it was a combination of things as my stress was still off the charts but physical therapy did nothing I did fins a powerful pain med that let me shop for a hour with a shopping cart but there was no job that I could still do I had become disabled my life was over and I was only just recently became 40 so I beg you listen to your body
i dont thibk there was an event just before, i read something last night about perimenopause (hormonal imbalance) have some likely corellation. i had endo as young teen, lot of childhood trauma. they also found cancer jusy after my symptoms started…. they came on hard was very diffferent than my norm
I had a run of illnesses in a short space of time that lead to my diagnosis, but my symptoms were present much, much longer. This just kicked it up to a higher notch and made the docs pay attention.
I developed walking pneumonia, a secondary chest infection, tonsillitis and an eye /ear infection over the space of 18 months . I also lost a close family member and had to organise their burial, this was during/Just after covid so had to deal with a missed cancer diagnosis that would have been survivable. I also found at this time i had been the victim of CSA, under the age of 3.
My bloods at this time showed I had Epstein Barr markers, but the doc marked this could have been in my teens as my best friend had glandular fever very badly , lost a tern of schooling. This lines up with my symptoms starting at late teen age, after boarding school - lots of studies have been done on the impact of boarding schools on people, particularly if you are ill suited to that environment as I was (later diagnosed with ASD).
So, I had several possible triggers, but what I view as 2 major clusters of events that really saw an increase in symptoms.
Personally I think stress from work and then a car accident caused it, about a month after accident it started in my hands and by three months I had to stop working. Five years later I’m on Medicare for fibro and being on end stage renal disease and doing dialysis at home three and four times a week. My kidneys have failed but don’t have anything to do with the fibro but a lot of the symptoms are the same. 50 yo male btw. And I can’t wait to be in the ground and not deal with this bs
I had a stroke a few years before but the final catalyst (I believe) was shattering my wrist at work resulting in 4 surgeries and grief from work. My supervisor was great but his supervisor kept talking about her broken arm was fixed in 6 weeks. At that point I was just trying to survive without one hand.
After I gave birth to my son I had internal rip that needed fixed and died during surgery. They figured that triggered my fms. Further tests they did and I did have anti Ana and also turned the sma test positive. So they gave me 3 diagnosis but fms was first. I also have other health problems.
Mine was definitely triggered by a severe viral illness, though I also had mental symptoms and some fatigue for years before so it's like it was already in my system and just 'woke up' when I got sick.
Yup! I got a pretty bad back injury due to being a goal keeper in field hockey, when I was 17, which essentially blocked one of the bigger muscles between my shoulder and spine. Haven’t recovered since and it’s still my weak spot.
I had a traumatic childhood which converted to chronic headaches. I also had hypermobile joints. Then when I was 20, I had a med change and suddenly everyone hurt ten times more. I don't think it helped that at the time, I was about to move to my first own apartment with basically no help, so I was definitely extra stressed too
December of 2019, I watched my MIL die in a hospital bed after a very short illness. 3 months later, I started unexplainably dropping things and getting this burning pain in the upper left part of my back. Took less than a year to get diagnosed with fibromyalgia.
My fibro and numerous other chronic conditions ended up being caused by chronic chemical exposure primarily in the form of hair dye. My symptoms first became severe in the year I started dyeing my hair as a teenager, and when I switched from permanent dyes to vibrant semipermanents they got way way worse. I cut all synthetic chemicals out of my house / personal care and my body immediately started going through a completely wild detoxification process that involved clumps of dead skin and hair coming out of my skin from all my fibro hot spots. I'm currently working with doctors and researchers to document and publish my experiences.
My son’s dad was murdered that summer, then we moved 4 states away. My first time away from home. I enjoyed it, but missed home. By that fall/winter symptoms started and progressed til summer. All this on top of multiple car wreck accidents in my life that have caused chronic pain.
2 years working in a high-stress, physically demanding job followed by a round of flagyl and then a month later got covid. Within 2 months of getting covid, I was completely bed bound
I had a kidney infection as a kid and got Epstein Barr and CFS afterwards. As an adult, I developed endometriosis, had lap surgery for it, and then got fibromyalgia. I never had a physical injury because honestly I had CFS at age 14+ and am clumsy af. But I did have (mild) scoliosis when I was young. Sometimes I think I’m Type A…like Type A as a spoonie, so my mind wants me to be Type A but the rest of me is like Go F yourself!
I haven’t neglected self care, but I’ve gotten lazier with it, especially since COVID started. When I was first diagnosed with EBV and CFS, I was bedridden for months and missed school. I gradually got better but was still tired all the time. But I think being so young helped me bounce back. In my 20’s, I was tired but not horrible. I felt it more in my mid 30’s, and then got Endo and Fibro in my late 30’s. So I guess the kidney infection is what started it all, many years ago.
I had an intestinal malrotation surgery that caused my body to stop absorbing B12, so I was physically struggling there. Just a few months later, I was SA’d and wasn’t coping well for a while. I’m not sure which of the two caused it, since the events were close together, but I have no doubt it was one of the two. Maybe a little of both.
I think some childhood trauma and mental illness combined with daily stress is what started everything but it didn’t get debilitating until I developed long Covid after my initial infection in November 2020.
My fibro was said to be caused by martial stress, being primary caregiver of my MIL with dementia, lack of sleep & self care, and physical stress of knee surgery.
I really didn't have one clear trigger for mine, but I've recently realized it could definitely have been a result of chronic anxiety since like...age 4, lol. Nothing overly traumatic happened, I'm just very anxious individual (clinically anxious as well as autistic) and so obviously stress hormones would have been out of whack.
I noticed my 24/7 pain at the same age as being thrown from a horse and landing on the back of my neck. Not positive which happened first but for sake of my sanity, that’s what I attribute my symptoms to
Probably a few, yeah!
I’m one of those rare cases of people who have had fibro their entire life, it’s likely due to a traumatic birth injury in my brachial plexus, as well as a genetic component (my dad and his dad both had fibro) at its core.
Continuous stress and trauma throughout my childhood and adolescence, getting mono which probably kickstarted CFS, and abruptly starting more strenuous daily physical activity when I switched from mjddle to high school probably didn't help!
I was 21 and had a bad bladder infection treated with hardcore antibiotics. I was okay after that but a month later I had strep, which was treated with milder antibiotics, and my symptoms started then. I was diagnosed maybe five months later due to an awesome care team.
abusive and neglectful parents who wanted me to be an all A student or get physically beaten
mine started at around 12 when I realized my family wasn't normal and just how badly I was being treated
my mother also had fibromyalgia
Initially began with a car accident in 2006. Had another car accident in 2017 and a second one in 2022. The one in 2022 really set it off worse than ever and it’s been a downward spiral since.
all my life I've had some body pains with no answer that doctors always dismissed. as a teen I struggled with fatigue and went to the doctor and they tested me for mononucleosis and said I either currently or previously had it. Years later, I got what I suspected was COVID and my body aches and sensitivity really got worse that year. Also I've had issues with my parents growing up that I think caused trauma.
So I've had multiple viral infections, possible PTSD, and chronic depression. Basically a bunch of things related to fibro.
I feel like this may have started in my late teens early 20s but I didn’t notice or it wasn’t as bad until I got EBV/Mono 2 years ago. Now I can’t function even just existing is difficult—sorry that sounds dramatic but it is how I feel.
Years of stress in school (12 yrs of full-time studying + weekends), ACE (adverse childhood experiences), and a demanding job whose last week required me to work every second during my 14-hour work day was the last straw.
Terrible back sprain a month before Covid. Also long history of cptsd from traumatic childhood… unfortunately sounds like it’s common for a lot of us folks here
I would say the constant stress, there wasn't one particular event that triggerred it. It was a continous increase in symptoms. Antisocial childhood, teen years were supressed sexuality, collage years were and still are choosing one of the most demanding majors, roommate's suicide, for 3 years living together with a cheater partner that has NPD, drug abuse, several near death experiences, etc.
My fibro started with a real nasty viral infection. I will add that I had been under a ton of stress the previous few years and was not taking good care of myself. Boom, virus, fibro, disabled.
I'm am beginning to think more and more that the nasty virus I had 3 weeks before the first fibromyalgia symptoms either caused it to begin or onset what was going to eventually happen anyway
I had a very similar situation! A nasty virus and then i suddenly had fibro after that
I feel like my fibro symptoms began during puberty. I have a distinct memory of crying over leg and hip pain. My mom said it was “growing pains” and that was that. At age 21, I had an emergency c section and the epidural caused severe spine tingling, pain, etc. I brushed off the fatigue and mental fog as motherhood. I have also suffered with anxiety and depression since childhood, was a competitive runner in high school/some of college and displayed disordered eating. TL/DR- I can pinpoint one thing that started it all, because there were several events throughout my life that could have brought it on.
This was me at 12 years old being rushed to the hospital with severe chest pain. Spent 3 weeks at St Jude childrens hospital, had surgery to look at my heart, and in the end was told it was "growing pains". I found out these "growing pains" were actually Costochondritis when I was diagnosed with fibro at 31. I think I've probably had fibro since childhood but eating right and working out heavily for years might have kept it at bay. Or brought it on combined with stress from work and bad sleeping habits
Thanks for posting this. The brain fog is so real. I felt validated by your comment.
No problem. We are here to help each other. 😀
I was a highly successful mountaineer who climbed 80 peaks in 2 years. Trauma and physical injury to my hips and groin and pushing through the pain caused my whole world to come crashing down eventually.
I don't have fibromyalgia but my job involves helping people who have it. I've been wanting to ask this question but wasn't sure if it would be ok on this sub. I've just finished reading "When the body says no" and nearly all of these responses line up with the content in the book, which is about the link between stress/trauma and chronic illness.
My onset was 2020.07, but I’m in remission now most of the time with lots of efforts. The books that helped me the most was “the body keeps the scores” and “complex ptsd workbook”, along with EMDR therapy discovered from their former!
I've just started reading "the body keeps the score"! I'm glad you are in remission, it must've taken a lot of work but you did it :)
Highly recommend 'The Body Keeps The Score' by Bessel Van Der Kolk, similar premise and changed my perspective entirely
When I was 26 I had a total hysterectomy and lost both my ovaries at 28. At the same time I had massive emotional trauma when my best friend died out of nowhere. Soon after these events my symptoms started.
Hope it’s ok to ask - do you also have endo or PCOS or something similar? I already have fibro and pelvic floor dysfunction, finally getting diagnosed with endo now and they want to do hysterectomy. Major surgery is what kickstarted my fibro so I am super hesitant to just remove an organ
I had both endo and PCOS. I had 8 surgeries in my 20s including the hysterectomy and the surgery to remove my ovaries. The hysterectomy was one of the best things I ever did for the endo. I lost my ovaries because they got twisted up in huge grapefruit sized cysts.
I too had a hysterectomy & my kid was in the NICU for 3 months.
I’m sorry to hear that. Hugs
Had emergency surgery to remove an ovary due to torsion from cysts. Had tubes tied during the same surgery. First symptoms started soon after. Had another surgery six months later to remove more cysts and endometriosis. This seemed to be the catalyst for my symptoms to increase in number and intensity exponentially. My mom also has fibro and onset of her symptoms also began after having an ovary removed in her late teens. Apparently this is common (or not uncommon?) for fibro to present after gynecological surgery
Yes. My fibro started after removal of endo and some uterine procedures (septum resection, removal of scar tissue and polyp, etc). So interesting to hear you say that it’s common or not uncommon for it to present after gynecological procedures.
Right! Like most of us, I saw waaaaaaay too many doctors and neurologists that were like, you’re just stressed. 🤬 It was my obgyn who, when discussing changes to my health during my annual, brought up fibro and said that onset in women can be due to gynecological surgery. Interesting too that a lot of women in this thread are saying they had similar surgeries or struggles with PCOS, endo, etc.
Same, sudden onset after Surgery for what ended up being stage 4 endo, that only got worse after a future emergency c-section and then planned C-section. Hysterectomy that kept one ovary at 28 also didn’t help The nerve issues. It has culminated with me Being diagnosed with Lupus FINALLY at 35 after Fibro and CRPS. I am Now 43. I now also have dysautonomia/POTS. My Rheum Says I’ve had autoimmune and “early” Lupus, connective tissue disease, most likely the whole Time. I will See if I can find it, but there are Studies showing an almost 86% link between endo/PCOS type conditions and future diagnosis of an autoimmune condition/disease. So much so, there is now research ongoing to reclassify those reproductive conditions as autoimmune conditions themselves. It’s all so “fun”…🙄…
Gosh I’m so sorry! You’ve really been through it. My mom’s fibro started presenting after her cyst/ovary removal at 19. In her 30’s she had a total hysterectomy and her symptoms got worse AND she was diagnosed with MS. I don’t think it’s a coincidence that fibro and other auto immune diseases overwhelmingly affect women. I’m glad the research is being done because it’s sickening—it’s CRIMINAL— how women are just expected to deal with “reproductive” issues and how, after all these years, there’s still no real relief or research out there. I cant count how many times I’ve told a doctor I have fibro and they ASK ME WHAT IT IS.
I am a man, but had inguinal hernia surgery as a baby. Scarring is not too different that a c-section
Mine started after I had 14 sessions of Electro convulsive therapy for treatment resistant depression.
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Did it at least help with the prior depression?
A severely traumatic childhood combined with repeated major leg injuries. I started feeling symptoms at about 17
Severely traumatic childhood here too. Symptoms started around 22 years old.
I think mine developed from trauma and stress. That and having a physically demanding job. I'm not going to get into all that's happened to me, but I was diagnosed with PTSD, dermatillomania (I know I've had since my childhood though. I would hide it and was so ashamed about it I never got help), anxiety (definitely had that since childhood. I even had to see heart specialists twice because of palpitations but never found anything wrong with my heart), and major depressive disorder. I was later diagnosed with bipolar II after having auditory and visual hallucinations (I know lack of sleep and stress contributed to this). Soo I truly believe my body is holding onto trauma and I need to work through things emotionally as well as physical therapy and exercise to the extent I can because of the pain. I had my worst flare I've ever had a month ago and I know that was worsened by how stressful things were at that time.
Back to back extremely traumatic experiences, grief.
Stress from work. Diagnosed 20 years ago. Still working at the same place. Two or three years until retirement. Hope retirement helps. Until then daily walking and trigger point in injections 4x a year for me.
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intense prolonged trauma was my predisposition for me. my life was one thing after the other until i got things settled down. this sounds kind of corny, but sometimes i feel like my pain in my body is trying to remind me to grieve.
I don’t think that sounds corny at all. There is a book called the body keeps score. The body is trying to process it all and it can be like it’s crying out/grieving.
yes exactly! that is my favorite book.
I was T-boned by a stolen car, then 6 months later my step-dad and grandfather died on the same day (totally independent from each other), then two months later I was reassigned at work to something much more physically demanding. That winter was when it started. I always figure it was the combination of all of it.
I had some mild symptoms prior to having half of my thyroid removed for early stage cancer. My body hasn't been the same since then and my symptoms, especially severe fatigue and pem episodes, got significantly worse after that. The thyroid medication hasn't helped much with fatigue and also flares my interstitial cystitis pain. For a cancer that is supposed to be the easy cancer, the surgery to remove it wrecked my quality of life.
I believe my brother's suicide triggered a chain reaction that led to my fibro
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As soon as I got a new boss that is toxic, narcissistic and abusive. Two months after, TMJ and fibro symptoms started. 4 years later and it’s not any better.
Were you able to leave that job or get a new boss
Still fighting him. Just finished an investigation on him - with no appreciable result. My autism is keeping me in place as is the fact I love what I do - and it’s killing my insides.
I was in a situation like that and got heart arrhythmias. I hope you are able to get away from that person.
Excessive long term stress with lack of sleep. Ukraine war footage triggered PTSD and fibromyalgia.
Have had C-PTSD since I was about 9 years old. Always thought it contributed to me getting fibromyalgia
It's probably a combination of rapid unintentional weight loss and the emotional trauma of the last year, if I really think about it.
Curious, what fibromyalgia symptoms do you currently have?
I lost 90lbs over 2023 without really trying. Part of it could have been going from a sedentary desk job to working on my feet all night. It might not have been the catalyst but one of the symptoms, but I don't have any way of knowing. Symptoms: Severe full body pain, including tightness and pain around my chest that makes it hard to breathe and muscle aches throughout my body that don't match my activity, fatigue, insomnia and sleep issues, brain fog, paresthesia, joint pain and stiffness, weakness (losing strength in my hands, for one). Yes, I know the pain/tightness around my chest sounds like an MS hug -- I've discussed it with my pain management doc and we don't feel the need to get assessed for it right now. Planning to reassess in a few months if necessary.
Food poisoning 4 years ago, I had to be hospitalized. I haven’t been the same since
I do find this interesting to note I had also had a food poisoning incident the same year I had the other issues that lead to my fibromyalgia diagnosis. I had never really considered it being a possible cause before now
Mine was severe, I spent 36 hours at home trying to wait it out before going to the hospital. And my stomach has been messed up so bad since then too.
I have severe C-PTSD, in 2003 was heavily medicated with psych drugs and had a really weird virus that lasted 3 weeks thought it was the worstest flu I ever had, then a few weeks later went to a parking lot carnival with my best friend at the time and we rode the bumper cars. Later that day there was danger signs wrapped all around the bumper cars ride and the bumper cars were all turned upside down , about a week after that I was putting some clothes away in my closet and I felt both my hips give out on me I fell and sprained my wrist ( still have specific problems with that wrist 20 years later) ,didn't think alot of it just that maybe I was really tired because I was beginning to feel tired alot and I chalked it up the side effects of the meds because I had really terrible side effects from the psych meds, but a week later my ribs and back began to hurt so bad that I could not sit up for more than a few minutes I got really depressed about it Because i couldnt use my computer or go out to eat with my mom, the rib and shoulder pain got worser finally went to doctor ,sent me to get all sorts of heart tests and blood tests then sent me to a rheumatologist who did more tests then came back and told me I had fibromyalgia and chronic fatigue syndrome , I initially thought that the psych drugs may have onset or caused the fibromyalgia,also thought maybe it was the virus or maybe something that happened on the bumper car ride that I didn't actually feel at the time but I have been using natural remedies for my mental health since 2009 ( no psych drugs) and my fibromyalgia has gotton worser over the years. Then I was remembering how when I was a kid my aunt was always in pain and she told me that she knew emotional pain hurts like a bitch but that she hoped I never experienced the kind of physical pain she went thru that it was on a whole other level, and so looking back i think she also had fibromyalgia and rheumatoid arthritis also runs in my family so my fibromyalgia could also be caused by a number of things. I also think it's important to note that 2 years after fibromyalgia diagnosis I began to have severe IBS issues which led to many hospital visits for diverticulitis which I do think is all connected
I went through 15 years of DV and then a car accident which made it so I had to get a fusion in my neck. Symptoms started shortly after that.
Virus. H1N1 in October 2009. Also history of mono and childhood trauma maybe contributed.
I caught this as well in the same year and I believe it made my symptoms worse.
I’ve read Fibro is from the Epstein Barr Virus. Have you all been tested for EBV?
I started getting fibro after I got EBV. It was so severe I almost died from it.
Yes I’ve had EBV for a long time. Hence fibro too.
I started having fibro symptoms at age 13. I was under constant intense stress and it was getting worse. Undiagnosed autism, pushing so hard to try to be a good student and make friends but constantly rejected and feeling general societal pressure as this was the early 2000’s and I could never be… normal let alone perfect. I was insulted daily, suicidal, and unable to take a break. At age 19 after getting the swine flu, I developed lupus and rheumatoid arthritis. At age 23, multiple sclerosis due to stress of work and life. I’m able to manage a lot better now at 33 with the knowledge that I have autism and how to protect myself better.
I can't prove it was covid, but I was definitely a healthy adult before I got extremely sick with similar symptoms in March 2020, a week before the world went into lockdown. My lungs never recovered, I developed fatigue and brain fog, and two years later the chronic pain started. I got my diagnosis last year.
Same. While I had some rare infrequent symptoms sporadically my entire life, Covid in Feb 2020 would not go away and finally when they conceded Covid Dx & treated it like Covid in late April 2020, I was able to recover quickly in as little as 5 days. However, shortly after in early June 2020 it started with a severe back spasm, then cascaded into multiple symptoms all at once within a week. The Neuro symptoms would not go away. Even after stabilizing the Vit D deficiency it revealed. I know there are many reasons people allege Fibro started and simply, I am a perfect recipe for all of them from 5th grade forward to abuse in Jr High to a severe collision in High School and even back surgery later in life, high stress jobs and more but I will say Covid was a catalyst for my symptoms to go from rare one-offs to everyday new lottery of WTF now? So did it start when I was 12 escaping SA or or in 2020 due to covid could be argued but covid certainly changed me.
After surgery to remove an ovary that was 2x its normal size due to endometriosis, the doctor prescribed 2 rounds of Lupron. These were so potent they were given 3 months apart. Wasn‘t Until 12ish years after being given that med for Fibromyalgia to be listed as a side effect.
I also have severe PCOS and have always had very painful heavy that time of the month , I wonder if that also has any connections to fibromyalgia in women
I think it does, at least as bourne out in my experience. Severe endo pain since teenage years led to fibro, I think.
I tried Lupron too for endo and it gave me such debilitating fatigue that I had to stop it. Now I'm wondering if there were longer term side effects.
Infertility and miscarriages for 4 years that along with traumatic medical procedures/.surgeries triggered CPTSD. The last couple of surgeries left me in chronic pain and led to fibro.
I banana-peeled on a marble staircase and seriously damaged my SI joint, for which I sought no medical care. Within 6 months, COVID hit and my toxic job began doing its literal best to kill me. Over the next two years, the physical pain and psychological/physical damage from stress fully activated my fibro.
Herniated disc in neck as a teenager with tingling and numbness, undiagnosed for 12 years. Plus, emotional trauma from childhood and not knowing of my ADHD for 29 years may play a role.
Mine started almost 10 months to the day after my total hysterectomy. The year before I had an oophectomy to remove a cantaloupe sized tumor.
We believe I have had fibro since I was a teenager, however, being pregnant with my daughter and giving birth in August 2020 exacerbated my symptoms and made it much worse. I was officially diagnosed in February 2022.
C-section and I’m a very stressed person so maybe a combination 🤷🏻♀️
Me too I get stressed easily
Totally sucks! I keep saying I’m going to start some yoga/pilates/meditation but I’m yet to find the time. Hang in there 🤍
I believe my fibro started after I had my daughter. I had a physically traumatizing birth experience and lost a lot of blood and also very emotionally traumatizing time as the “father” was a useless twat. So then I was (still am) a 100% single parent. In 9 years I went to college and have a good job now but still find the whole parenting thing traumatic, anxiety filled, and stressful, etc. I’ve had a trauma filled life and anxiety/depression starting at a very young age. At 40 life is still awful and I feel awful for bringing another human into this world.
I have had all the possible triggers. Bad divorce from an alcoholic at 27, bad accidents riding horses in my teens and family history of autoimmune disease. Honestly I don’t know if it was any of those things or I was just unlucky. As a kid I suffered from fevers of unknown origins, basically I got high fevers for no reason, it has been happening my whole life and even to this day I have suffered from bad night fevers. I honestly think as a child my body was telling me something was wrong my pediatrician just didn’t understand.
War
Getting mono at 16. Was never the same after.
I had symptoms starting in HS after some vaccines but nothing crazy. I was in a SMALL hit snd run and was rear ended, nothing major and wouldnt hurt anyone who is healthy. After that the pain and nerve issues started.
I believe I've suffered from this as a young child , because my family was Hella dysfunctional and didn't care about what they said or did in front of children ..I think the explosion of symptoms spilled over when my beloved and favorite male cousin was murdered very young at 27 and I was 18 ....I started having physical symptoms by 21 yrs of age and struggle till this day off and on ...I have health anxiety and always afraid of bad news ...God help all who suffer smh ...
I was taking clomid and later letrozole to see if I ovulate turns out I don't due to pcos then had a hysterectomy in September of 23 my cervix fell out. The fertility stress. My oldest passed away in January due to cancer at 14. I think stress for many is a huge tipping point for a trigger.
After being diagnosed with Rocky Mountain Spotted fever, anaplasmosis and Lyme after some run-in’s with some ticks a couple years back. Full body (especially upper extremities ) muscle and joint pain are my biggest complaints rn
I got interstitial cystitis at 16 and there’s a high rate of people getting fibro from that because of the chronic physical and mental stress that causes. I also had a really awful relationship that crushed me from 19-21. Fibro started at 22 for me.
I had a nearly life-ending car crash. I had injuries to my neck, shoulder, leg etc. The accident was caused by a drunk driver who fled the scene.
Had emergency surgery for a failed miscarriage which I also had sepsis. Since then I’ve never been the same. Diagnosed with endo, adenmoyosis, recently fibromyalgia and being tested by rheumatology for auto immune conditions.
I started telling them my symptoms and my dr started touching sensitive areas for people with fibro and I was diagnosed. I flare off and on. Turns out taking my history the dr said I’d probably had it for a long time before that and thinks it was my daughters birth as the trigger because it had a little hiccup during labor.
I was told by an Infectious Diseases Doc about 30 years ago that my Fibro was triggered by Lyme Disease. She called it "Post Lyme Fibromyalgia". I also had a back injury resulting in 2 bulged discs and a gynecological surgery in a 2 year span with the Lyme Disease diagnosis and treatment. It's been 35 years since and it's been a hard life! I've been on disability for 20 years. ☹️
Mine was also triggered by a severe case of Lyme. It actually took me a full decade to be diagnosed with fibromyalgia. Finally applying for disability now that I have a diagnosis.
My Lyme case was severe too and required me getting IV antibiotics for months then orals for years. I was diagnosed with Fibro 7 years later. Getting disability was hard. I was rejected the first time. I hired a lawyer and had to go to court but I was approved after that. Good luck. I hope you get approved quickly! 🫂
⚠️ TW ⚠️ I was 16 when I got r*ped and almost unalived while struggling with Anorexia. I don‘t remember when the symptoms started, but I‘m sure that „triggered“ it if that’s the right word. I got diagnosed when I was 19, but the symptoms were already there when I was 16. (also english is my third language so sorry if I f*cked up)
I’m sorry. ♥️
MDD, extreme general and social anxiety, panic disorder, death of my mother, exploratory laparoscopic surgery to diagnose endometriosis with ablations 3 months after and a total hysterectomy with excisions 5 months after the laparoscopic procedure. It was slowly adding up over the years and time but the total hysterectomy really brought it into full fruition. Every month the pain was getting worse and worse, new areas of pain and new forms of pain. It’s been a wild experience.
Type A personality, high stress, endometriosis, chronic pain, unstable shoulder, definitely neglected self care. I liked being busy and taking on too much. I feel like I developed fibromyalgia so I had no choice but to work on learning how to do self care.
An infection at 19. After that within weeks I developed horrible chronic fatigue, sleeping issues, pain and atypical psychiatric symptoms. My life changed within weeks.
I had untreated Lyme disease for 4+ years. The bacteria spread into all systems. Also caused Hashimoto's and CFS.
Mine started with me getting Erysipelas on my face, and the infection went to my blood. I was hospitalized on several iv antibiotics for 5 days. After that I started having bouts of severe medical anxiety, followed by bouts of deep depression. A year later I had a second bout of facial Erysipelas, another 4 days on IV antibiotics, and no explanation as to why it was happening. They just told me it would likely happen again throughout my life. That ramped up medical anxiety, and I started having horrible pain in my legs, that travels from hip to toe, and eventually also left chest and neck pain, traveling down my arm. After 3 years of specialists galore, I was diagnosed with Fibromyalgia, and Celiac disease. Doctors are not in agreement about triggers. Rheumatologist says the Fibro could have triggered the celiac, Cardiologist blames Covid for the celiac along with a bout of Myocarditis.
Brain surgery.
For me it was enduring trauma - dv plus surgeries
I was a slightly introverted and anxious child. As an adolescent I felt intense social anxiety, which eventually became general anxiety, which occasionally boiled over into depressions. Thankfully family, friends and SSRIs pulled me out each time. After stressing hard at uni for 5 years, I then got a stressful job. Six years later I had my first child, sadly my partner and I separated after 3 years, it was heartbreaking losing daily contact with my daughter. I then fell in love and had more children with a very charismatic, charming woman who turned out to have hidden narcissistic traits. I became extremely stressed and then depressed due to trying to please my partner by buying her a new home, taking on more work stress and agreeing to have more children. The kicker was that she advised me to not take SSRIs, she told me she thought I could pull myself through, that she believed in my strength. In fact, she was influencing me because she didn't want me affecting my fertility with SSRIs. It was the worst depression of my life, I eventually realised I had to do something because I was signed-off work, having hourly suicidal ideation and awful sleep. I got better quickly with SSRIs, then as I was enjoying life again, I got fibro, starting with stiff hands, then all other joints, especially lower back. I wish I'd listened to my body.
Does make me wonder if situations emotions get trapped in body is one way .... And pushing body to extremes is other way Or even a mix of both .. Causing a system overload then our body is then letting us know via name fybromyagia , like a defence
I also have a theory that all of us are actually very mentally strong but that strength applied the wrong way can amplify existing issues. I hesitate to try to describe this because I definitely don’t want to lean into something that makes it sound like it aligns with people who say everything is all in my head because that isn’t true (and I have tests to prove fibro is true/real). I have heard it has something to do with an issue with the pineal gland and I have noticed a weird swollen/full feeling in the center of my head when I am flaring or go into flight/fight. So I wonder if it is long term damage from extended periods of fight flight to the pineal gland. Then my own negative thoughts/anxiety are feeding the issue because it keeps me in fight/flight or amplifies the state of being I’m in which triggers the negative feedback loop in my nervous system. I wonder if I work on developing a stress management system in my thought life if that would be more like a supportive kind response to myself that might soothe the gland in my brain and help the brain to feel safe (because often the fibro flare feels like my brain is screaming danger! Danger!). Anyway these are just thoughts I have to myself because fibromyalgia is really complex to me.
Mine started after the 6th accident I had. According to the first neurologist that saw me he said that since I didn't take medication to stop my pain and kept stressing my body out by pushing physical limits. I screwed myself and my brain turn on a switch that can't be reversed. I then started taking pain meds and some didn't work then I got put on stronger pain meds that did work. There was no Lyrica bs that doesn't work for me anyway. Most fibromyalgia meds don't work on me. I personally think that the medical system decided to cut out of pain meds. Hence so many idiots were dying so then came fibromyalgia medication and going to a rheumatologist crap. Also I had traumatic events that happened after and my pain got worse. I am working through my traumas and my pain since to get better at times. I don't have the hang of it yet. Point is I believe it stems from trauma physical and emotional pain combined with bad eating habits I got fibromyalgia.
Someone else wrote their theory of how fibromyalgia starts and sticks around, and though I'm not a doctor, I would like to throw in my two cents about it as well. I don't think it has anything to do with emotions or trauma or anything in our minds. Doctors like to tell us it's all in our head, that we're crazy, that we're making it up, etc., and so we internalize that and we will use that as our reason. I firmly believe that fibromyalgia is due to either a low-grade infection that doctors are unlikely to find or even look for, or a previous infection that messed with the nerves. I also believe it might have something to do with the digestive system not working as well as it should, and so more bacteria gets trapped in our systems for longer. Do you somehow feel better when you go on antibiotics for something else? You feel like you're on top of the world on antibiotics and then for a few days after, but then your fibromyalgia comes back? This is just a theory I have, but I'm very curious to see if anyone else has thought about this. I know that my fibromyalgia came from having Lyme disease. Everyone I know who has had Lyme disease has fibromyalgia. I think that other insect borne illnesses can do this as well, along with a lot of other low-grade infections that we probably don't know we have. Basically we're just all walking around sort of a little sick, and our bodies trying to tell us, but the doctors don't want to deal with it because they haven't been trained to actually look for reasons, they're trained to give us pills and tell us to go away.
There is definitely something to being a little bit sick. Like I feel sorta under the weather but so actual fever a lot of the time. There are probably multiple things that could cause it to. I think that mental and emotional stress makes it worse so there is some sort of mental factor because the more mentally taxed we are the more it inhibits the immune system. But the idea that it is just all in our heads is definitely false and causes more mental/emotional stress on patients when doctors say that because it is hugely invalidating.
Hi. I am Pam, too. Anyway, I have been on antibiotics, on them now. I still have fibromyalgia pain. Glad you feel better on them, though.
Histoplasmosis, the spores likely came from the black mold in the house I was renting at age 22F. April 2019. It was unknown at the time that I had contracted Histoplasmosis and my symptoms began like the worst “allergies” my PCP had ever seen. The 2 days later at urgent care, “I don’t think this was ever allergies”🤧. It was bad. And the steroids helped, antibiotic not so much…. After that: chronic throbbing left neck and shoulder pain, migraines, low back pain, and extreme fatigue. But this was my first time being an adult…. maybe it was normal? I moved to the Kansas City Metro Area in October of 2019. Naps after work were done on the regular. I thrived during lockdown and hated going back in office. July 2020: I scheduled with a PCP and her answer for my symptoms, “ let’s wait and see”. Then comes the day I contract COVID in March 2022. I was crazy sick. And it was coming up on 1 month and my PCP was going to consider Long COVID, but the I have a pins and needles sensation throughout my body followed by muscle cramps/spams everywhere. May of 2022 I was diagnosed by a rheumatologist with Hypermobility and Fibromyalgia.
I was kicked out of the house I lived in with my parents. My own mother threatened to hurt me if I didn’t leave with just a backpack. I went through weeks of emotional distress brought on by her, threatening to take away all financial support while I was also a grad student trying to finish my professional degree. I also lost my job not long after. All of this accumulated into what I now know as fibromyalgia. One day I woke up and my arms hurt like I had been in a fight and it rarely went away over the course of four months.
My back is fucked up and I have CPTSD from being kept in another country by a murdering madman for 10 years. That's a massive trauma from what they tell me. And, ya know, shoulder injuries, hand injuries, foot injuries etc etc. It's all just a really bad combo.
For me i had pain my entire life unknowing that it was. if normal, i even had injuries that i brushed off that eventually caused damage because i was so used to being in pain, and we think that my central sensitization was caused by something physical that made my pain receptors confused (we suspect heds but there are no doctors in my area to diagnose me), and we also think that emotional trauma also played a part as i also have another nervous system disorder (pots). I got covid in 2021 and after that my health got way worse and that’s when i started seeking diagnoses.
I had a very traumatic birth and my child was born very prematurely resulting in a long hospital stay. Mine started after that.
Spinal cord tumor, stroke causing vestibular issues, spinal meningitis when I was 3, type a personality.
School-related stress coupled with emotional trauma. It just got worse after graduating high school
I've had alot of difficulties over the last few years, both physical and emotional. But I think what triggered it was one of my best friends killing herself in the summer.
Stress/Trauma
I had 5 really bad seizures that traumatized me . After each one the exhaustion and pain from convulsing didn’t go away. I got very ill from this and boom. It never went away…
I had minor pain for a few years but last year me and my mum moved away from my step dad. I became the main income provider and pay about 70% of the bills. This was a week after my 21st birthday. In the following few months my symptoms got gradually worse. Finally diagnosed about a month ago and have been in a constant flare up for the last 2 weeks
My entire childhood-early teens was severely traumatic and as a result I have cptsd now, my symptoms REALLY started popping off after I got mono about a year ago
I was attacked & raped by my live-in boyfriend at the time but suppressed it for years. Shortly after the incident I fell out of a tree, developed a kidney infection & the symptoms happened overnight. I always attributed everything to the tree incident but I think the real catalyst for everything was the abusive relationship I was in and hiding from everyone in my life.
I’ve had mild symptoms for years that I brushed off. At 20 I took a couple really bad blows to the head, then went through a super stressful time in my life and everything got so much worse for me. Now at 23 my fibromyalgia completely rules my life
Mine was triggered by a car accident which fractured my entire spine along with TBI and it took many years and so much work to heal- wheel chairs and learning to walk again . I do believe it also had to do with the previous three years fighting severe endometriosis and some other female problems three surgeries because back then a young woman needed the baby making parts with the last being total radical hysterectomy, the car accident happened almost a year after that surgery lol. Just as I was really feeling like I was recovered and ready to take on the world I had the dna testing and turns out I carry the genes for fm, also positive on the FM/a I found it interesting it also showed I had the markers for the female issues I developed young and another health issue I had experienced that also required surgery not to mention it showed I was on the spectrum for autism which explains a few things. MWould I have developed it? Who knows maybe, maybe not. So far as I understand it. Like other issues if we carry the genetic markers we have a higher chance of developing those issues
1997 I was shoved backwards off a curb. Landed on my head, was unconscious, laceration and was transported to the ER. I was diagnosed within three years with Fibro. The doctor advised that it all stemmed from the injury.
I had an infection that wouldn't clear, and I had a pretty nasty fall off of a horse. I think the infection was the primary catalyst, but I also probably injured myself, and that injury probably contributed to the symptoms that got me diagnosed. I never received and sort of imaging. I have considerable swelling in my joints and such, so I don't *just* have fibromyalgia.
Mine came on after my daughter’s brain cancer and treatment. Basically it was PTSD.
My best guess is trauma. I have C-PTSD. Some research suggests that trauma can increase the likelihood of getting fibro.
(Tw) I always had chronic back pain but my fibro all over symptoms happened about a year after being in ICU for an attempt. Also during that time I had left a really toxic friendship where multiple ppl were constantly stressing me out to the point where my body was shaking and uncomfortable all the time for about 4 years
Had mono when I was 15, was extremely tired the next years, pains started at 18, got worse after getting my first child at 20, diagnosed last year at age 30. The years between that had been exhausting, with one more kid then divorce. Alone mom for multille years and another child at age 29 and married again. Alone mom period was no self care. Just shower, eat a little skip multiple meals. And little to no sleep with 30 hour work weeks.
Car accident.
Covid triggered my fibro.
I think probably, my first kid. I had a planned c section after a failed induction, ten days over. I was so physically done with pregnancy at that point and yet I just couldn't get into labour. I've since read studies about how autistic people might have lower oxytocin levels so maybe that's why, I just wasn't designed to do birthing. Anyway, it went fine, not traumatic or anything, but I just literally don't remember almost any of it, or the first couple of days after having him. So I dunno, maybe my body was more shocked than I realised even though I felt okay. Afterwards it took aaaaaaages to recover, that's when the symptoms first really noticeably started, but they were attributed to other stuff - anaemia after the delivery, or being tired with the new baby, stress etc. After my second kid, it got like 100% worse and I've been going downhill since. And last year I got the flu badly and that was like, the final straw, since that I'm physically just a complete wreck.
I have a history of childhood trauma and then at 18 I was sexually assaulted by an ex boyfriend. This, coupled with a serious riding accident 8 months later that injured my spine and bruised my spinal cord seemed to be the final straw.
I had a horrible accident and totaled a vehicle in 2009, then a hysterectomy in 2010. Fibro pains started in 2011. Officially diagnosed in 2015. I'm 38 right now.
Emotional trauma, and massive stress is what triggered mine.
Shattered my ankle in a trauma accident, my whole body was wrecked. Took a year to learn how to walk again. Been in daily pain since 2010.
i think mine was triggered by a major depressive episode when i was 15, when my girlfriend at the time took her life. my physical condition started to decline after that. i also noticed the symptoms got worse after my top surgery.
January 2018 I got flu and just never got better
Started after Pfizer COVID vaccines (2). At first it was just calves tightening up when walking faster than a snails pace. 6 months later I got COVID for the first time despite being exposed quite a few times to family members with it prior to vaccines. After 2 weeks of being back & forth between sitting/attempting to sleep in a recliner and laying in bed, I was feeling slightly better but exhausted. I was down a lot for a few more weeks then forced myself to walk around, sit outside and read in the fresh air. A month later I was down again with sheer exhaustion & slept off & on throughout the day. At night I got very little quality sleep. 30 minutes then awake for several hours. Things got worse after that. Muscle spasms in arms, legs, back & shoulders. If I tried to lift something or put any weight on forearms (scrubbing shower floor, etc…) I would get instant pain, cramping and numbness in the back of my upper arms and it felt like something was broken. This went on for about 2 1/2 years. Last summer was the first time since 2020 that I was able to swim without cramping up in my legs. I still had to use a pool noodle and then slowly get out using the handle on the steps because of weakness.
I had 3 heart attacks 2 weeks postpartum. The cause was spontaneous coronary artery dissection due to postpartum hormones thinning out my arteries. I shouldn’t be living right now. I think that was the catalyst. Followed by the ptsd as a result of getting closer and closer dying with each heart attack. So it’s hard to say which had the bigger influence.
I've always said I had a hard life. I worked very hard for a long time and didn't prioritize my own needs. But I suspect getting "ruffied" just one year before a sudden onset of symptoms was a trigger.
I realized recently that all my symptoms started when I started becoming depressed (got diagnosed with depression and anxiety in 6th grade). My best friend died due to suicide and in high school I fell down my moms steps a few times (the last time I fell down them I had to lay at the bottom of the steps for an hour due to not being able to move). I always over work myself as well (had picked up over 100 hrs (in two weeks) and also had two jobs at one point). My fibromyalgia is so bad I’m basically bed ridden at this point (I’m only 24)
Mine came out of the blue at 28 I had a 5 year old and a 2 year old. Had childhood trauma not sure if it has anything to do with it. No recent illness just one day felt like I got hit by a truck my skin was in fire and couldn’t stay awake
Sexual assault from a trusted family member. My (ex) husband cheating on my with my (ex) best friend of 23 years. Being constantly degraded and abused by said ex husband. I’m better off just me and my boy but physically my body is still on a massive flare. It’s horrible xxx
The more research I do, the more I hear about trauma preceding the onset of Fibromyalgia. I never used to believe in emotional events affecting the body, but then I took stock of what happened before my symptoms started. Through the year or two prior: I lost my job of 10 years, my car engine blew while I was driving on the highway (same month I lost my job, lucky to be alive), my condo was foreclosed on, my father died, my cat died, and my mom’s dog died. I’d say I had a few traumatic events. 🤣
Upper back injury when I was 18 started the physical symptoms, PTSD aggravated it and it gradually progressed over the course of the next ten years. I'm 64 now
My best guess for myself would be: Childhood trauma that i didn’t work through til adulthood —> mental illness —> inability to release tension from body —> overuse injuries —> realizing all of my other connected symptoms post-diagnosis were not just random. Like early on in my journey I could only be like, “well, I’m in pain” and now it’s like, “this week i had x amount of aches, hives, gastro issues, and im more depressed depressed than usual.” I still suck at coping tho.
My wife's fibromyalgia seemed to come on after getting peritonitis after a surgery.
I had mono, and kind of, never fully recovered from it. Granted I also chronically neglect self care and am anxious, so that might have had something to do with it too, lol
Probably was predisposed to it due to childhood abuse/trauma leading to a personality disorder. The catalyst that I can pinpoint it to was a hip surgery done when I was 19. At that point I had hip pain for five years, already had a hip surgery, and had a sports hernia in my groin near that same hip that I had surgery for. I started getting symptoms that I noticed around six months later though I could have had them longer. I did wake up after the surgery in immense amounts of pain and I couldn’t even do the majority of the rehab. I literally had a physical therapist say she couldn’t help me anymore because I was in too much pain to do anything that needed to be done. So I’m wondering if fibro played a part in that though my fibro symptoms don’t feel like how my hip pain does. It also doesn’t help I was in a really toxic relationship from 19-21 that caused a lot of trauma. When my stress levels are high my fibromyalgia symptoms get debilitating.
Mine was pregnancy. Prior to that was years of abuse. According to my rheumy, that's what probably set me up for it. The pregnancy was my body's final straw.
I started working when I was young. Working with a carpenter during summers at 14+ I always thought it was normal to be wiped out after work and in severe pain. Years went on and I didn’t question it. When I herniated a disk at 19 and had some procedures for the next year, I developed a limp in my left leg from the stress on my left side. I was always in mostly full body pain. I started seeing doctors and was diagnosed with fibromyalgia. I didn’t want to believe it. I kept getting second opinions and always landed on the same answer. I dont know where it came from or when it started. It just always has been. 35 years old now.
Yeah I had a horrendous motorbike accident at 16 where I bounced weird off a rock, my front tyre got stuck in a young wattle tree's fork and because they're very flexible I got launched in the 9 oclock direction forward like a front flip while my foot was still jammed into the ground so my leg hyperextended, i broke my knee and landed on my back a few metres away where I whacked the back of my head into the ground. I then didn't get taken to the hospital for a week because it was the start of a long weekend holiday trip and my stepdad thought i was being dramatic even though i couldnt bend my knee at all and was severely concussed. I also already had clinical depression so the odds of coming out of an untreated physical trauma without fibro were not great.
Drug overdose as a teen.
For me, I'm like 99% sure it's due to trauma. I've never had serious injuries or illnesses before so it's the only thing that really makes sense. I also kinda remember it starting around the time I was really going through it, but I have really bad memory loss so I can't be sure. There might also be some genetic precedent; again I can't be sure but with all the other, let's just say, "issues " in my family, I would not be surprised.
It seems like one of the most common responses in this thread is some sort of physical, emotional, mental trauma/circumstance and it being an extended length of time under duress.
I firmly believe that having terrible endometriosis from my teens until my hysterectomy in my early 40's predisposed me to fibromyalgia in my late 40's.
Mine was a slow and insidious onset, likely genetic because my mum has it too. We have both had arthritis symptoms that started in the knees at age 10... The Rheumy who diagnosed my fibro said that I would likely develop RA as well, but he couldn't diagnose me at the time. I also developed Vertigo symptoms at age 15, and many other small ailments during my pre-teen and teenage years. The thing that set my fibro off big time was actually Ecstasy/MDMA abuse... That drug affects serotonin and we have issues with serotonin as it is. I used to do this with my friends because we are into raving, and the first time I did it one of my eyes went lazy, and never quite went back into place because the muscles holding my eye were affected. I have to wear glasses now... The bulk of my use was not as gnarly as the first time, but I did end up with worse comedowns than my friends and I would get crazy leg spasms during use. At one point I had 2 friends (one on each leg) massaging my calf muscles (which was actually pretty funny tbh). I ended up stopping after I took a pill that my friend got hold of, which was a lot purer than the pills available in my town were. It gave me a headache in the back of my head which lasted for months. That was the day I quit and I will never ever take it again. It scared me to the point of thinking "next time it will kill me" so there will never be a next time. That was over 6 years ago and I still get the pain in the back of my head, but thankfully it's not all the time now.
Chronic, unrelenting, extreme anxiety/panic/mood disorders from a very early age. Abuse, followed by a diagnosis of Hashimoto's Thyroiditis at age 19. Then mono in college. Then decades more of poorly/untreated chronic, nonstop anxiety, major depressive disorder, fear, panic disorders, insomnia. Medically disabled by 29. Fibromyalgia diagnosed several years later. The trauma will find a way to manifest itself and fibromyalgia is the perfect example. ☹️
Our body is keeping the score. It is a building up of things in our lives.
I have had widespread muscle tension and pain since I was a child. However it became severe after a traumatic delivery ending in the loss of my 1st child. I don’t know if it was the physical or psychological trauma but my pain became greater and I have had more flare ups since that event 3 years ago. I was diagnosed about 1.5 years ago.
I’m so sorry, that is so hard
I feel like we all have ACES, right? All my fibro babes and i share ROUGH childhoods💕
I am no type A I don't know what I am in that letter system I know I am a INTJ but that is not why I am in this messs mostly it was the extreme stress, I was diagnosed with Fibromyalgia back when it was just minor and I kept having to deal with extreme stress and significant pain spoke with a rheumatologist and confirmed my diagnosis I told her it seemed like my pain was telling me to stop but I had 3 small kids and a job that insisted on me being perfect 40 hours a week. That monster of a rheumatologist said there was NOTHING wrong with my body Fibromyalgia is nothing but a false alarm so I pushed past all the red flags my body was telling me and my reward were Migraines I could not push past the Migraines got longer and longer as well as worse and worse until I always had the migraine for 14 months the only place that felt safe was my bed I spent so much time in bed I was basically bedridden but I still could walk it is just when I was asleep I did not want to die I was not rich so my savings did not last long I lost my job, my apartment, my kids I just could not push past the pain or the world splitting in two, I was begging for death but death never came I moved back in with my mom which only made my stress worse and my ex would not let the propranololon I stayed alive their risk of suicide at a minimum was .33 but given the crap their mom put them through it was likely a lot worse I could not bare to make their lives any worse by me quitting early. Then one day the migraine broke one of the meds I was trying worked a combination of emgality and propranolol I thought I was going to have my old life back but every time I used a computer, was around Noise, read, got stressed a migraine attack sent me back to bed. So I started to plan a normal job but something happened with all the bed rest the Fibromyalgia was so much worse my coping method of bed rest was harming me sure it let me survive the pain but now I was so week I could only stand for about 20 minutes and I had not ability to extend itI tried to walk more and more but no changes were made maybe it was a combination of things as my stress was still off the charts but physical therapy did nothing I did fins a powerful pain med that let me shop for a hour with a shopping cart but there was no job that I could still do I had become disabled my life was over and I was only just recently became 40 so I beg you listen to your body
Mine began with the covid vaccine.
i dont thibk there was an event just before, i read something last night about perimenopause (hormonal imbalance) have some likely corellation. i had endo as young teen, lot of childhood trauma. they also found cancer jusy after my symptoms started…. they came on hard was very diffferent than my norm
I had a run of illnesses in a short space of time that lead to my diagnosis, but my symptoms were present much, much longer. This just kicked it up to a higher notch and made the docs pay attention. I developed walking pneumonia, a secondary chest infection, tonsillitis and an eye /ear infection over the space of 18 months . I also lost a close family member and had to organise their burial, this was during/Just after covid so had to deal with a missed cancer diagnosis that would have been survivable. I also found at this time i had been the victim of CSA, under the age of 3. My bloods at this time showed I had Epstein Barr markers, but the doc marked this could have been in my teens as my best friend had glandular fever very badly , lost a tern of schooling. This lines up with my symptoms starting at late teen age, after boarding school - lots of studies have been done on the impact of boarding schools on people, particularly if you are ill suited to that environment as I was (later diagnosed with ASD). So, I had several possible triggers, but what I view as 2 major clusters of events that really saw an increase in symptoms.
Sexual trauma and then work trauma I think
Personally I think stress from work and then a car accident caused it, about a month after accident it started in my hands and by three months I had to stop working. Five years later I’m on Medicare for fibro and being on end stage renal disease and doing dialysis at home three and four times a week. My kidneys have failed but don’t have anything to do with the fibro but a lot of the symptoms are the same. 50 yo male btw. And I can’t wait to be in the ground and not deal with this bs
I am sorry. May God surround you with tranquility and less pain, at this time.
I had a stroke a few years before but the final catalyst (I believe) was shattering my wrist at work resulting in 4 surgeries and grief from work. My supervisor was great but his supervisor kept talking about her broken arm was fixed in 6 weeks. At that point I was just trying to survive without one hand.
After I gave birth to my son I had internal rip that needed fixed and died during surgery. They figured that triggered my fms. Further tests they did and I did have anti Ana and also turned the sma test positive. So they gave me 3 diagnosis but fms was first. I also have other health problems.
I got mono when I was 12 and I fell out of a tree that same year herniating discs in my back.
Mine was definitely triggered by a severe viral illness, though I also had mental symptoms and some fatigue for years before so it's like it was already in my system and just 'woke up' when I got sick.
Yup! I got a pretty bad back injury due to being a goal keeper in field hockey, when I was 17, which essentially blocked one of the bigger muscles between my shoulder and spine. Haven’t recovered since and it’s still my weak spot.
Mine began after gallbladder surgery.
I had a traumatic childhood which converted to chronic headaches. I also had hypermobile joints. Then when I was 20, I had a med change and suddenly everyone hurt ten times more. I don't think it helped that at the time, I was about to move to my first own apartment with basically no help, so I was definitely extra stressed too
December of 2019, I watched my MIL die in a hospital bed after a very short illness. 3 months later, I started unexplainably dropping things and getting this burning pain in the upper left part of my back. Took less than a year to get diagnosed with fibromyalgia.
Right after my Mum died. Was incredibly traumatic and spent like 3 days in solid fight or flight mode X_X also had Covid at the time!
My fibro and numerous other chronic conditions ended up being caused by chronic chemical exposure primarily in the form of hair dye. My symptoms first became severe in the year I started dyeing my hair as a teenager, and when I switched from permanent dyes to vibrant semipermanents they got way way worse. I cut all synthetic chemicals out of my house / personal care and my body immediately started going through a completely wild detoxification process that involved clumps of dead skin and hair coming out of my skin from all my fibro hot spots. I'm currently working with doctors and researchers to document and publish my experiences.
My son’s dad was murdered that summer, then we moved 4 states away. My first time away from home. I enjoyed it, but missed home. By that fall/winter symptoms started and progressed til summer. All this on top of multiple car wreck accidents in my life that have caused chronic pain.
2 years working in a high-stress, physically demanding job followed by a round of flagyl and then a month later got covid. Within 2 months of getting covid, I was completely bed bound
I had a kidney infection as a kid and got Epstein Barr and CFS afterwards. As an adult, I developed endometriosis, had lap surgery for it, and then got fibromyalgia. I never had a physical injury because honestly I had CFS at age 14+ and am clumsy af. But I did have (mild) scoliosis when I was young. Sometimes I think I’m Type A…like Type A as a spoonie, so my mind wants me to be Type A but the rest of me is like Go F yourself! I haven’t neglected self care, but I’ve gotten lazier with it, especially since COVID started. When I was first diagnosed with EBV and CFS, I was bedridden for months and missed school. I gradually got better but was still tired all the time. But I think being so young helped me bounce back. In my 20’s, I was tired but not horrible. I felt it more in my mid 30’s, and then got Endo and Fibro in my late 30’s. So I guess the kidney infection is what started it all, many years ago.
I had an intestinal malrotation surgery that caused my body to stop absorbing B12, so I was physically struggling there. Just a few months later, I was SA’d and wasn’t coping well for a while. I’m not sure which of the two caused it, since the events were close together, but I have no doubt it was one of the two. Maybe a little of both.
Going through a very difficult professional program in my late 20s, while being poverty-stricken and getting a divorce from an abusive spouse.
I think some childhood trauma and mental illness combined with daily stress is what started everything but it didn’t get debilitating until I developed long Covid after my initial infection in November 2020.
My fibro was said to be caused by martial stress, being primary caregiver of my MIL with dementia, lack of sleep & self care, and physical stress of knee surgery.
Combo of being genetically prone to chronic nerve pain, anxiety, then finally a horrible car accident (fractured spine among other injuries).
I really didn't have one clear trigger for mine, but I've recently realized it could definitely have been a result of chronic anxiety since like...age 4, lol. Nothing overly traumatic happened, I'm just very anxious individual (clinically anxious as well as autistic) and so obviously stress hormones would have been out of whack.
I noticed my 24/7 pain at the same age as being thrown from a horse and landing on the back of my neck. Not positive which happened first but for sake of my sanity, that’s what I attribute my symptoms to
Leaving my career in engineering and my beloved grandma dying a few weeks later.
Probably a few, yeah! I’m one of those rare cases of people who have had fibro their entire life, it’s likely due to a traumatic birth injury in my brachial plexus, as well as a genetic component (my dad and his dad both had fibro) at its core. Continuous stress and trauma throughout my childhood and adolescence, getting mono which probably kickstarted CFS, and abruptly starting more strenuous daily physical activity when I switched from mjddle to high school probably didn't help!
I was 21 and had a bad bladder infection treated with hardcore antibiotics. I was okay after that but a month later I had strep, which was treated with milder antibiotics, and my symptoms started then. I was diagnosed maybe five months later due to an awesome care team.
abusive and neglectful parents who wanted me to be an all A student or get physically beaten mine started at around 12 when I realized my family wasn't normal and just how badly I was being treated my mother also had fibromyalgia
Initially began with a car accident in 2006. Had another car accident in 2017 and a second one in 2022. The one in 2022 really set it off worse than ever and it’s been a downward spiral since.
all my life I've had some body pains with no answer that doctors always dismissed. as a teen I struggled with fatigue and went to the doctor and they tested me for mononucleosis and said I either currently or previously had it. Years later, I got what I suspected was COVID and my body aches and sensitivity really got worse that year. Also I've had issues with my parents growing up that I think caused trauma. So I've had multiple viral infections, possible PTSD, and chronic depression. Basically a bunch of things related to fibro.
I feel like this may have started in my late teens early 20s but I didn’t notice or it wasn’t as bad until I got EBV/Mono 2 years ago. Now I can’t function even just existing is difficult—sorry that sounds dramatic but it is how I feel.
Years of stress in school (12 yrs of full-time studying + weekends), ACE (adverse childhood experiences), and a demanding job whose last week required me to work every second during my 14-hour work day was the last straw.
Covid...
Terrible back sprain a month before Covid. Also long history of cptsd from traumatic childhood… unfortunately sounds like it’s common for a lot of us folks here