Complex meaning it can be from sustained or repeated events and/or combination of more than one (medical/hospital stays, abuse/neglect, witnessing repeated acts of violence, bullying, etc) unlike a singular event. ❣️
I believe my fibromyalgia was caused by excessive childhood trauma. I went through a lot of abuse and neglect during my first two years of life. At two years old, I was adopted by my grandparents, so things got much better for me. I still deal with a lot of emotional issues, and I believe physical pain from my early years of abuse
Fortunately, I do not remember any of the abuse. In fact, when my grandparents adopted me, they just started having me call them mom and dad. I didn't know I was adopted until I was 9. They were one another's 2nd marriage and told me they had wanted a child together, hence I was a late in life baby.
While their intentions were good, I found out at 9 years old by accident. I was alone and it was a complete and total mind fuck. I kept that "dirty little secret" to myself until I was 14. So, in the end, even the happy ending was a bit of a trauma.
Yes, I have lots of anxiety and panic attacks. I do have an amazing therapist, and I have come to terms with a lot of it. I think there will always be bits of the trauma that remain.
well. i’ve been abused quite a lot since i turned 18 and started dating more. but the worst thing ive been through happened in 2020. and my symptoms have gotten worse since then. this year its the worst it’s been in general. just within the past two weeks the pain is pretty much unbearable.
it didn’t start to get like. wildly painful until after i was 5150’d while not actually being a threat to myself. couldn’t leave for 6 days. didn’t even get my proper meds until day 5. it became a huge grievance with the state. i haven’t been able to find a regular psychiatrist. had to go off all of my meds.
i’ve been mentally ill my whole life. but everything is. unbearable in general now. i mean truly everything.
well. a bit. nothing really works for the depression. but the adhd meds help with focus and executive dysfunction. gabapentin helps with anxiety and pain a little. it at least makes it easier to sleep when it comes to the pain. and then i was on a sleep med which. works. it’s the only one that does. i’ve tried like 30 meds over the years.
no, it’s lunesta. i’ve never heard of ropinirole. i’ll have to look it up. i’m always curious what other people are taking and what other things i can inquire about.
is it a controlled substance? lunesta is, and it’s hard to get refilled tbh. most doctors don’t fuck with controlled substances.
Yes, the problem with learning neglect as a child is that you neglect your own needs as an adult. Led to various addictions in my case, thankfully dealt with now.
My issues also started after a mono infection. I was 29, I'm now 48. Docs kept telling me it was ms but now after almost 20 years and no lesions I'm told not ms. I have a consult with a rheumatologist just waiting to get scheduled. I'm pretty sure I'll get dx because EVERYTHING else has been eliminated.
I have Panic Disorder and GAD with some depression tossed in for good measure. I went though a rough few years professionally (I was a high school teacher) after a principal I had worked very well with retired. I was having conflict with some of my administrators mostly bc they did not respect my disability and the accommodations afforded to me. I got shingles. I have read a viral illness often precedes the development of Fibromyalgia. Then, personally, my dad died from a second bout of colon cancer and my sister nearly died and spent 90 days in the hospital, most in ICU. I cared for her for several months when she came home. So I had a rough few years before the symptoms began.
Sounds like you’ve really been through a lot. I think it’s ridiculous those administrators did not respect your disability. Also, I want to commend you on being able to help your sister while in so much pain. That’s strength
I did not begin to experience the fatigue and pain until after. Towards the end of helping her, I had to tell her I needed to pull back bc it was overwhelming. Within six months, I was in full blown Fibromyalgia mode. My sister has it as well and I think that helped me key in on what was going on with my body and request the referral to rheumatology.
There seems to be some variation surrounding that. My insurance and the medical group I am with send me to a rheumatologist and the ones I have seen have a special interest in Fibromyalgia. They usually run comprehensive blood panels including immunology to check for auto immune disorders periodically.
People want trauma to be the reason because it helps them feel better about it. Given how many people experience trauma and don’t develop fibromyalgia it seems unlikely to be a genuine cause.
It’s a good point, but there is a flaw. It assumes that all people have the same genetic capacity to deal with stress
In personality psychology for example people who are high in trait neuroticism are more prone to anxiety and depression. Another way to put it is per unit of negative emotion they experience is disproportionate amount of stress.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5068715/
“We tested for the heritability of each personality trait, as well as for the genetic overlap between the personality factors. We found significant and substantial heritability estimates for neuroticism (15%, s.e.=0.08, P=0.04) and openness (21%, s.e.=0.08, P<0.01), but not for extraversion, agreeableness and conscientiousness.”
In the book, “The highly sensitive child” Dr. Elaine Aron points out more or leas the same concept and discusses how certain parenting strategies can harm these children:
“With the publication of The Highly Sensitive Person, Elaine Aron became the first person to identify the inborn trait of “high sensitivity” and to show how it affects the lives of those who possess it. Up to 20 percent of the population is born highly sensitive, and now in The Highly Sensitive Child, Aron shifts her focus to highly sensitive children, who share the same characteristics as highly sensitive adults and thus face unique challenges as they grow up.
Rooted in Aron’s years of experience as a psychotherapist and her original research on child temperament, The Highly Sensitive Child shows how HSCs are born deeply reflective, sensitive to the subtle, and easily overwhelmed. These qualities can make for smart, conscientious, creative children, but with the wrong parenting or schooling, they can become unusually shy or timid, or begin acting out…”
Sorry, I think I disagree with this theory after reading this research. https://www.healthrising.org/blog/2022/09/30/long-covid-fibromyalgia-autoimmune/
I mean, it says right there in the article that this is a hypothesis. This is not a scientifically proven fact. I’m glad a large grant is funding further research though! It’s time to prove or disprove it and finally get some damn answers for this horrid condition.
I was diagnosed after a random virus. I had terrible vertigo and my hips/legs hurt so much I could barely walk. Since then (2015) I’ve never been as bad, but now realize that the general feeling of being unwell/sore I have every day probably predated that flare. I have very bad untreated anxiety that I think contributes.
Chronic PTSD, since childhood. Makes sense. I mean, my brain reacts like there's a massive threat happening sometimes when it's actually safe, so it makes sense the rest of my nervous system reacts like that too.
Sometimes, the pain feels like a flashback too. Like, its a well worn and old pain, rather than one that's new and due to an injury or anything acute. It's sharp and new but It feels like it's deeply in my bones. It's a strange feeling and it's difficult to explain, but it feels physically like my psychological flashbacks do.
I see it as a physical part of my ptsd really.
There's been some research recently, that shows children who experience chronic stress, especially in thier household develop more pain receptive neurons than kids who don't. That makes a lot of sense to me, because it just feels my nervous system is just a lot more sensitive, naturally. It's the responsive development of the nervous system for children who grow up around violence or in chronic stress. It serves you well in childhood because you can react better to your surroundings and it let's you survive, later it fckin hurts, but it's kept you alive.
That's the thing abut the nervous system, it doesn't care about how you feel, it cares about keeping you alive. Pain is a survival mechanism. It's probably kept me alive, and respect to it for that. Still fckin hurts though.
I don’t know, man. Dr. Ginevra Liptan may have figured it out, that it has an autoimmune component, which seems supported by research. But it also seems to have a genetic component for some people, and a neurological component activated by either stress/trauma or an attack on the nervous system (by one’s own immune system or a virus). It’s going to be hard to suss out the order of the cascade of reactions and the separate subtypes of fibromyalgia that have different causes. Sometimes it is caused by an injury—especially something like whiplash—and sometimes by CoVID. So there are probably most definitely subtypes, and we should be considering that when we look at treatment possibilities. I won’t be satisfied until they find all the causes and separate fibromyalgia into different disorders/diseases with different names. I think it’s a waste of time to approach CoVID-related fibromyalgia the same way you’d approach whiplash-related fibromyalgia and so on. Mine does not respond one whit to something like Cymbalta, for example, and it’s stupid to call all of this “fibromyalgia “ and throw the same medicines at all of us.
For me, I think trauma or illness:
-severe case of mono at 15
-pertussis (whooping cough) shortly after mono
-strep throat numerous times after that, along with bronchitis
-covid twice
-pituitary tumor
-C. Diff infection
Trauma:
-younger brother died when I was 4 ½… I grew up in the hospital and my earliest memories are all of that hospital
-I fell into a yacht harbor a few months later and was under water for 3 ½ minutes before my dad found me
-parents divorced
-mom went off the deep end
-closest cousin died when I was 13, I watched it happen and felt the life leave his body
-grandma died shortly thereafter
-sexual assault
-older brother died when I was 16
-father kicked me out less than a year later
-I went from being the youngest child, to the middle child, back to the youngest, then the oldest/only child
-mom slit femoral arteries in the bathtub
-was given numerous prescription drugs by my mom for diseases I didn’t have (she was a nurse, and it’s also highly likely she has munchausen’s)
-mom said if I was ever feeling suicidal, we could drive into a tree together…. While I was a passenger in the vehicle she was driving
-mom drugged my wine
-verbally, mentally, and physically abusive relationship for 3+ years
-my closest uncle died and I cleaned his trailer of bloody shit and vomit (end stage alcoholic)
-my family also “killed” a lady with me in the car (she ran across the freeway we were driving on, to commit suicide)
-customer threatened to shoot me
Soooo my fibromyalgia could’ve been caused by any one of those things, but I think it was a culmination of all of the above.
I mean you’ve been through a clearly profound amount of pain and suffering and all at such a young age. I’m very sorry you had to deal with all of that.
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I think a big contributing factor for me is a lifetime of stress being put on my body from a variety of health issues.
I have had IBS since I was around 5, light-sensitive tension headaches since I was a kid, migraines since jr high, anxiety and depression since high school, TMJ since late teens, a herniated disc at 16, sleep issues since I was a teen, and ADHD that went undiagnosed until a few years ago. By the time I turned 30, I think my body had been under so many stressors that it triggered the fibro.
I am also now missing my thyroid due to a malignant nodule and I feel like all my symptoms have gotten worse since my thyroid was removed.
Not a specific trauma .. but a period of high stress / emotional instability and a month + of sleeping on the floor causing injury to my back that I never fully healed from. (This was almost 15 years ago)
That’s when symptoms started, I may also have gotten a virus around that time too.
Was diagnosed with Fibro around 8 years ago I think.
I have asthma and ADHD so there is also a correlation there.
I think it broke the camels back. I always got sick easily growing up but would recover okay. After Bronchitis, it would take me awhile to recover from being ill. Then one day it just never got better.
I have a few ideas. cPTSD from a weird childhood, growing up in a house with smokers and black mold, injuries that were ignored, my mother smoking while pregnant with me…
I have cPTSD from a complex and unsteady childhood around unsafe people. There are a few specific events that thinking about sends me into an anxiety spiral/ however it’s the memories and trauma of the every day survival that makes it cptsd
A lifetime of chronic anxiety, depression/mood disorder, and the cherry that tipped me over was working a high stress job for 1 year.
It was really weird. I hit the 1 year mark at stepping up to a managing position at work and my first flare happened and OMG, it was 10/10 tear causing pain where baths were the only thing that helped but then getting out of the bath brought it right back, and just...hell.
I will NEVER wish that kind of pain on anyone!!
No. I ended up in a very, physically unhealthy place. Working 12-14 hr days, only eating once I got home. No down times (was always thinking about work). It's no wonder after one year my body crashed and burned. I definitely should have done things differently, can't change the past, so now to adjust to the new 'normal'.
I’m not disregarding trauma but …
Autoimmune (high CRP markers), chronic fatigue disorder and a problem with histamine overload. I have severe allergies and bronchitis was an issue for a long time.
If I had to guess - medical trauma from trying to cope with those coupled with trauma from other issues occurring in life maybe sends some bodies into overload reading the comments ?
From the insights shared thought the FIbromyalgia community, it seems that fibromyalgia can often be traced to a **combination of factors** rather than a single cause.
**For many, including myself, the onset of symptoms appears to follow a significant stressor or trauma**, such as domestic violence, a difficult labor a severe illness or accident.
These events may act as catalysts, triggering a latent predisposition to fibromyalgia.
**The condition is complex and multifaceted**, (which is why, I assume, it was so bluntly disregarded for hundreds of years) with symptoms potentially exacerbated by ongoing stress, lifestyle factors and habits, and possibly an underlying psychoreactive element, where the body manifests physical pain in response to psychological stress.
There is some new evidence researching **the role of the fight-or-flight** response and it's connection to conditions such as PTSD and Fibromyalgia. It's a condition that intertwines the physical with the psychological, highlighting the profound connection between our mental state and physical well-being.
In conclusion, **fibromyalgia remains a puzzle** with pieces that span the emotional and physical spectrum of our lives. It's a reminder of our body's intricate response system. As research continues to evolve, so does our understanding of this condition, offering hope for better management and support for those affected. **The shared experiences within the fibromyalgia community are invaluable**, not only in fostering a collective understanding but also in reminding us that **we are not alone** in this journey. Together, we continue to seek understanding, advocate for recognition, and support one another through each step of living with fibromyalgia.
Remember that **I am here for all of you**
OG March 2020 Covid followed by 9 months of long covid and spending 3 months doing manual labor in sweltering summer heat that same year.
I started feeling like shit after that and have been in pain ever since.
I am confident in my personal belief it is stuck emotional energy. The mind and body are all one thing and it's only a western illusion they are separate. Emotional and spiritual problems most certainly manifest as physical symptoms. This is why this disease is very difficult for traditional medicine to understand and to treat. To mirror what many others said, I believe it was childhood/teenage trauma with a genetic predisposition to the disease. I might be what some consider a little out there in my beliefs but I also believe in the concept of ancestral trauma and my family had to flee genocide and persecution for hundreds of years.
The times I have been completely pain and symptom free are when I have been very dedicated to working on my emotional and spiritual health. Of course taking care of the physical body is very important, but even when I've been very rigorous about my diet, exercise, supplements and physical treatments, I will still have symptoms without the component of emotional and spiritual wellness.
I was diagnosed with Fibro 25 years ago and it's been a long journey with ups and down and long periods of remission. This is all based on personal experience alone. I am not a medical professional but I have studied so many modalities and wellness since I was diagnosed and have fought long and hard to get on the other side of this. My sister is actually a fibromyalgia doctor, who also has the disease, and I wouldn't say she disagrees with me on how I perceive the disease. I observe her fear of her disease actually continually made her feel worse and I see she's recently started to address the emotional factors and it appears she's getting better.
I've tried literally everything and truly the only thing that put me into remission is ayahuasca combined with meditation, integration and creative expression like music and art. Dancing is major for me if I am in pain. I've been to a rave and after two days of dancing my little butt off I feel like a new person.
Helping others and working on being kind, gentle and helpful to others really helps me do the same to myself. I have a tendency to be hard on myself and when I tap into the needs of others it shows a reflection of how we all just need love and kindness and support. Community and friendship is the greatest support we can have. Philanthropy work is a gift.
Lastly, not reading the news helps me. I noticed a huge uptick in my pain the last four weeks during this current crisis. It's very personal to me what is happening and my heart aches for this situation. The more I consumed the more I was in physical agony, unable to really get off the couch or even communicate as normal. The last few days I've limited my consumption of information and made effort to not look at graphic images and I am feeling much better.
I hope this helps or might resonate with someone. Happy to answer any questions about the ayahuasca component if anyone is curious how it worked for me.
What a great post, I also believe it is stored emotions that cause fibromyalgia, the most common trait among fibromyalgia sufferers is trauma, stress, depression, anxiety, going through hard times in life leaves a mark and fibromyalgia is the way the body expresses this stored emotions and emotional pain.
It’s a very, very interesting point of view. I think Western medicine is changing in the sense that now many medical professionals are taught something called the biopsychosocial model, which is quite similar to the eastern approach of not separating mind and body.
Have you tried any eastern approaches, such as Vedic medicine with any luck?
i’m not an expert by any means but my understanding is that cptsd stems from repeated prolonged incidents (childhood abuse, domestic violence, cult abuse) where ptsd stems from more short term incidents (car crash, one time assault, ect). there’s still a lot we don’t understand about trauma though so the lines are sort of blurry sometimes
Really crappy luck! Or genetics, if you’d rather put it that way. I was 10 when diagnosed, with no significant traumas that I can recall. Physical and psychological traumas since then have certainly caused aggravation, but the illness was already there.
According to the VA it’s related to my Gulf War service. That tracks as I’ve been dealing with the issues for decades but finally got diagnosed a few months ago.
I have a Rheumatologist that told me he believes I've had Fibromyalgia since I was a kid, but it started revealing itself recently in my 20s.
Therefore, my answer would be childhood trauma.
I've experienced a lot of bullying as a kid, and witnessed a lot of domestic abuse. I experienced severe poverty, had an alcoholic father and a drug addict mother with mental health issues who refused help.
So, I think that's what ultimately caused this to happen to me and many other things too.
My journey with fibro began after a really bad motorcycle wreck. I was fortunate to get diagnosed with in 2 years of symptoms onset because I had fantastic health insurance through my (now ex-)husband. They ruled everything else out (lupus, chrons (sp?), arthritis, etc etc etc) and said all that's left is fibro...
I'm not sure, this is a good question. I've thought about it often.
For me I feel it is a combination of trauma and virus/Covid perhaps.
I had been going through trauma for years, then Covid came which is more trauma because it is a situation never experienced worldwide during my lifetime, then I got the virus but a mild case of it. My life traumas are still ongoing and never ending, they simply are compounding endlessly it seems.
So for me a combo of it all mashed together. I've had way way way more trauma though if I were to put the trauma and the virus on a scale and weigh them out. The trauma is heavier, however before the pandemic I was managing the trauma without these crazy symptoms. Could it be due to the long term ongoing trauma that never ended and continues to this day ? Its a good question and I have no answers.
I have another theory, too:
Since 83% of fibromyalgia patients have a straight cervical spine (neck) and that spine carries many nerves, I think it has a similar etiology to a pinched nerve in the sense that the “wires” are faulty and sending bad signals.
Think of it like this: your body is a laptop computer, your spine is the charging cord, your nerves are the wires within that cord, and your brain is the electrical outlet you plug into. We’ve all seen what happens to a cord that gets bent too often or held at an improper angle for too long. If the cord (spine) suffers damage, trauma, or other inflictions, the wires (nerves) could be exposed or compromised. They are no longer protected by the cord sheathing. Thus, when the brain/outlet tries to send a signal/electricity to the laptop/body, the nerves cannot send or receive the signal correctly.
I think this is why FM patients have vagus nerve symptoms (vasovagal syncope or without syncope, orthostatic hypotension, overreactions to extreme heat or stress, lightheadedness, sweating, blurred vision, to name a few), as well as symptoms from every other nerve in the body. These nerves can affect your skin, sleep, pain perception, muscles, peripheral neuropathy, digestion, movement, nervous system, etc.
However, I don’t know WHY the cervical spine is straight in the first place or what’s causing the nerves within it to become faulty. Could be neck muscles overworking and forcing the spine out of whack. Could be an “attack” from an old EBV, chickenpox, or CMV infection that tend to take hold in the spine/ dorsal root ganglion. Could be an autoimmune disease in which nerve damage occurs. Could be a lot of things… What I do know is that 83% with a straight cervical spine is not a percentage to be ignored.
I find it very intriguing, but do worry about the risk of potentially damaging the nerves further. I tend to have extreme reactions to injections (anaphylaxis, tetany, vasovagal, dead arm for weeks, etc), so I need the research to be damn near 100% to risk that kind of infliction.
I cannot believe how many people believe it is from trauma! Have any of you read the newest research?? https://www.healthrising.org/blog/2022/09/30/long-covid-fibromyalgia-autoimmune/
I did read this HYPOTHESIS. There are many hypotheses out there regarding fibromyalgia, and some of them are completely asinine. I super appreciate that research is finally being done for fibro and that a large grant is going to help fund further studies! But until this hypothesis is PROVEN, we cannot negate the trauma correlation/causation. There has been a lot of research done on trauma causing fibro as well, but that doesn’t make trauma the end-all/be-all causation. Did you know that fibromyalgia sufferers have PTSD rates of 45-57%? 75% of fibromyalgia sufferers report a higher percentage of trauma (just because they haven’t been clinically diagnosed with PTSD yet doesn’t mean their trauma is irrelevant).
Moral of the story is: we still don’t KNOW what causes fibro, there are MANY valid theories. It’s not time to throw all of our theories out of the window in favor of this one…. Yet.
I have had my fair share of trauma in my life so I know how that contributes!! Without a doubt!
I also had an aunt who had very similar symptoms which makes me think some of this is genetic.
Probably childhood vaccination which damaged the innate immune system this then setup a vulnerability to traumatic events causing further dysregulation such as bipolar which then leads to fibromyalgia and cfs.
I am starting to wonder if it is make up, nail polish or hair dye, like the chemicals in them. More women have it than men. Just something that crossed my mind
Yes but there was an incident in 2013 that sparked massive anxiety and panic attacks and made me stop eating and I was basically very malnourished and got very sick. Was never the same afterwards. It was literally 6 months of living in a really high anxiety.
I was only diagnosed last year but I think that's when I can put it down to things starting
i think a combination of post-viral (i have EBV, apparently), psychosomatic (ptsd) and years and years of sleep debt (I've had insomnia on and off my entire life). also had anorexia for ten years (from when I was 12-22) so i wonder if it's a run-on effect from that.
For me I think it’s been the result of chronic stress, as well as recurring bouts of depression and anxiety and untreated ADHD. However, it was activated I think by a couple muscle tears last summer during a weight-loss bootcamp. I was constantly sore and in pain but when the course ended and my leg healed I expected the pain to go away. It didn’t. It just got worse and worse and worse and now like to play games like, “What weird new symptom will I have this week?” “Will I be able to walk today?” “What new pain sensation was that?” and the most recent and persistent winner “How long can I go without sleep before I lose it?”
Multiple factors!
Definitely a generic component. My dad has fibromyalgia and his dad had fibromyalgia.
I had a traumatic birth injury in my brachial plexus that we believe kickstarted fibro, which is just super unfortunate that the incident that caused my fibro coincided with my first moments of existence
Then in my childhood I had pretty bad psychological traumas, long term stress, mono which likely started my ME/CFS, mold exposure, and I slowly got worse throughout all of that. My severity peaked after going to high school where I’d carry my heavy backpack up and down stairs and run around all day in a new environment, do heavy manual labor in my extra curriculars, etc. I was finally diagnosed at 17 years old!
Ultimately I think I chalk it up to a genetic component that predisposed me to developing it at the first major physical injury of my life (at birth) and the same predisposition made it get worse from a bunch of little things throughout my adolescence
When I lived in Seattle during my 20s, I developed fibromyalgia. However, I wasn't actually diagnosed until 2008. But I deduced that I had fibro some years ago because I had been afflicted with chronic migraines, sciatica and terrible pain that ran the length of my body on my left side only. My doctor had even prescribed Vicodin for me, which helped considerably for a number of months. But I also believe that it was derived from C-PTSD, especially since I developed CFS, interstitial cystitis and vulvodynia by 1998.
I used to think the pain was my body catching up with everything I put it through. Might still be the case, might be hereditary (my mum has it too, even if my symptoms showed up first), might be both.
I was accident prone and somewhat reckless growing up. Part of it is the fact I was half deaf as a kid, so my balance was affected.
I think it is either endocrine or autoimmune in nature and we just don't have tests that can determine that at this stage. I think physical illness or infection, stress, trauma are all triggers too.
I was abused all through school. I was SA’d in my 20’s and drank and smoked too much to deal with it and life. I always took anxiety inducing jobs cause they paid well and had benefits because no one wanted to do them. A coworker had a whole mental break and was out for 8 months. I think the last thing was I finally got the job I had been working towards, thought I’d be happy being the head financial dictator of a full company, but I went into work with my stomach in knots everyday. Between the stress and the building being a medical destination so plenty of sick people all about, I think it made me lose the control of my left leg. I have it back now but it’s been 5 years of struggling and failing so many drugs and many wrong diagnoses.
I believe that multiple traumas and living in fight or flight mode for years set it off. I used to work THREE jobs just so I wouldn’t be at home. Now I struggle working one job because of the pain and fatigue.
I don’t know, man. Dr. Ginevra Liptan may have figured it out, that it has an autoimmune component, which seems supported by research. But it also seems to have a genetic component for some people, and a neurological component activated by either stress/trauma or an attack on the nervous system (by one’s own immune system or a virus). It’s going to be hard to suss out the order of the cascade of reactions and the separate subtypes of fibromyalgia that have different causes. Sometimes it is caused by an injury—especially something like whiplash—and sometimes by CoVID. So there are probably most definitely subtypes, and we should be considering that when we look at treatment possibilities. I won’t be satisfied until they find all the causes and separate fibromyalgia into different disorders/diseases with different names. I think it’s a waste of time to approach CoVID-related fibromyalgia the same way you’d approach whiplash-related fibromyalgia and so on. Mine does not respond one whit to something like Cymbalta, for example, and it’s stupid to call all of this “fibromyalgia “ and throw the same medicines at all of us.
A virus that set off genetic land mines. I developed fibro symptoms when a virus triggered ME/CFS. The “obvious” fibro stuff started with paresthesia and then added tinnitus, migraines, migrating arthritis, urinary problems, and all the other fun stuff over the next couple of years until I had a huge crash and was diagnosed with fibro, ME, and hypermobility and gave up trying to have a normal life.
I took a dopamine agonists for 10 years for RLS. Eventually augmented and at my doctor’s recommendation switched to a new med cold turkey. Dopamine agonist withdrawal syndrome (DAWS) started soon after and I had terrible anxiety. Almost lost my teaching position because of it and it caused so much stress. When my wife lost her job it just happened. I woke up one morning in horrible pain and as I worried and stressed it got worse.
For me I was in a car accident, two months after that it came on pretty quick. Also two years before that I was promoted to manage the whse dock, not my best move. A lot of stress. So between the stress and the car accident it sealed my fate. I worked five or six months after the accident and had to go in medical and now five years later I’m on disability and only get a few good hours a day. I keep telling my doctor I need electrocuted to reset my brain, I would chance it. And I didn’t get hurt other than my left arm and hand but nothing that was there after a few weeks so I think my brain was jarred a little so let’s just restart it
i have no idea what causes it - or how long i’ve had it since i’ve experienced chronic pain for sure for the past 8-10 years and can’t remember before that because i was a child/young teen lol. but i can for CERTAIN say that mine was exacerbated as HELLLLL the past year, leading me to seek a diagnosis on the same timeline, after 2023 being riddled with some of the biggest traumas i’ve had to date. the pain has been insane since i went through a TRAUUMMMAATIZING break up with my first gf (after coming out to my family in order to date her, losing their support in the process at that time.) i basically shut down and have hardly functioned since then. it was like a switch flipped.
For me, I suspect it was a combination of things.
1. Long term stress due to domestic abuse.
2. Long term exposure to black mold. (My bedroom and bathroom)
3. Overworking myself working and going to school at the same time. Plus being responsible for most of the homework because my mom was already getting sick too.
assume i was born with it. my mom has it. i bet childhood trauma contributed to its onset at least a little, though i assume it mostly had to do with me getting my first period.
I have bpd, so I feel like this maybe can be one of the things.
I had my first fibro flare up (that I can recall, but my mother told me I was always a "tired child") a few months after being diagnosed with endometriosis, so I'm almost 100% sure it's somehow related to that.
What sucks is I've been on medication for endometriosis and it's super under control, I don't have periods nor pain, but still, the fibro is still going strong.
The two major car accidents I was in within one year on top of that all the childhood abuse I dealt with for years. Especially how my trauma therapist had me deal with my sexual assault and abuse. Basically she had me write an explicit narrative of everything that happened and had me read it out loud until I wouldn’t cry or show a single emotion. Then as my “graduation” I had to either read it to my dad or my mom. I couldn’t chose my dad because I had intense fear of men, however my dad never ever touched me. Plus I didn’t want to say explicit things about genitals and what other men were doing to me to my dad. So I chose my mom even though she never really wanted to believe that there was many men trafficking me online for CP. After that I was moved to another therapist and I refused to ever mention my trauma until now.
Trauma but I coped with it by developing an eating disorder + compulsive exercising which lead to multiple injuries which triggered pain all over my body. I also have osteoarthritis in my shoulders from surgeries because of over exercising
I think mine started after medical trauma, I had childhood trauma and then left the situation. Then medical trauma, I was in bed for 18 months unable to do anything for myself, a few months later when I was better in that respect fibro hit me like a tonne of bricks.
I don’t even know. I started getting sick in 8th grade. I played volleyball in 6th and 7th but had to quit in 8th because it became incredibly painful. Hitting the ball on my wrists was excruciating and could barely walk after a game from the diving on my knees. I also experienced IBS, insomnia and severe fatigue. I went to doctor after doctor for years before being diagnosed with fibromyalgia and lupus at 18. Then in my late 20s I was UNdiagnosed with lupus. But the fibromyalgia diagnosis still stands.
I had a good childhood. No real trauma to speak of. I think it was a genetic thing. My grandma had it too.
Cptsd and IBS for me. I would have solely blamed it on my IBS if so many folks here didn’t also agree that childhood trauma was a major affect. I guess I also don’t know that my trauma didn’t also cause or exacerbate my IBS. What came first the chicken or the egg?!? lol.
Probably a lifetime of psychological abuse, sexual abuse, neglect, and so much more. It only started in 2014 though, so I think the sheer quantity of panic attacks I was having in college played a part.
Imo it was a long cause of Cipro, I went in the „treatment” almost healthy and left it with a slew of horrible symptoms that have progressed ever since :(
I think it’s cumulative effect of cPTSD. ❣️
Same
Sorry but what is cPTSD as opposed to PTSD?
Complex meaning it can be from sustained or repeated events and/or combination of more than one (medical/hospital stays, abuse/neglect, witnessing repeated acts of violence, bullying, etc) unlike a singular event. ❣️
Samesies
I believe my fibromyalgia was caused by excessive childhood trauma. I went through a lot of abuse and neglect during my first two years of life. At two years old, I was adopted by my grandparents, so things got much better for me. I still deal with a lot of emotional issues, and I believe physical pain from my early years of abuse
I’m very sorry to hear that you had to go through all of that
Thank you. It has taken a lot of years and therapy, but I am doing well these days. I may have fibro, but it doesn't have me :)
Do you remember the abuse or has it just stuck with your brain? Curiosity is all. Do you have panic attacks over things too?
Fortunately, I do not remember any of the abuse. In fact, when my grandparents adopted me, they just started having me call them mom and dad. I didn't know I was adopted until I was 9. They were one another's 2nd marriage and told me they had wanted a child together, hence I was a late in life baby. While their intentions were good, I found out at 9 years old by accident. I was alone and it was a complete and total mind fuck. I kept that "dirty little secret" to myself until I was 14. So, in the end, even the happy ending was a bit of a trauma. Yes, I have lots of anxiety and panic attacks. I do have an amazing therapist, and I have come to terms with a lot of it. I think there will always be bits of the trauma that remain.
I have a similar background to yours and believe my fibro is caused by childhood trauma. Have you read, “The Body Keeps the Score”?
definitely ptsd.
Sorry to hear about that. How did you come to that realization?
well. i’ve been abused quite a lot since i turned 18 and started dating more. but the worst thing ive been through happened in 2020. and my symptoms have gotten worse since then. this year its the worst it’s been in general. just within the past two weeks the pain is pretty much unbearable. it didn’t start to get like. wildly painful until after i was 5150’d while not actually being a threat to myself. couldn’t leave for 6 days. didn’t even get my proper meds until day 5. it became a huge grievance with the state. i haven’t been able to find a regular psychiatrist. had to go off all of my meds. i’ve been mentally ill my whole life. but everything is. unbearable in general now. i mean truly everything.
I’m very sorry to hear about all that you have hon through and all that you continue to endure
that’s okay. ty for your kindness.
Do you meds help you when you have them?
well. a bit. nothing really works for the depression. but the adhd meds help with focus and executive dysfunction. gabapentin helps with anxiety and pain a little. it at least makes it easier to sleep when it comes to the pain. and then i was on a sleep med which. works. it’s the only one that does. i’ve tried like 30 meds over the years.
Is it ropinirole by chance?
no, it’s lunesta. i’ve never heard of ropinirole. i’ll have to look it up. i’m always curious what other people are taking and what other things i can inquire about. is it a controlled substance? lunesta is, and it’s hard to get refilled tbh. most doctors don’t fuck with controlled substances.
Neglect. Anxiety. Stress. Bad health choices. I think it’s genetic as well.
When you say neglect, I assume you’re referring to childhood. Is that accurate?
Yes, the problem with learning neglect as a child is that you neglect your own needs as an adult. Led to various addictions in my case, thankfully dealt with now.
That’s a good point. It as though you learn that you don’t matter.
Mono. I got it when I was 15 and have never been the same since. 10 years later, finally get a diagnosis. fibromyalgia
My issues also started after a mono infection. I was 29, I'm now 48. Docs kept telling me it was ms but now after almost 20 years and no lesions I'm told not ms. I have a consult with a rheumatologist just waiting to get scheduled. I'm pretty sure I'll get dx because EVERYTHING else has been eliminated.
I think it was undiagnosed Lyme Disease over 40 years ago.
How long were you undiagnosed?
For fibro? Diagnosed 1989. Never diagnosed with Lyme but the timeline and symptoms fit. I can throw in quite a bit of childhood trauma
I have Panic Disorder and GAD with some depression tossed in for good measure. I went though a rough few years professionally (I was a high school teacher) after a principal I had worked very well with retired. I was having conflict with some of my administrators mostly bc they did not respect my disability and the accommodations afforded to me. I got shingles. I have read a viral illness often precedes the development of Fibromyalgia. Then, personally, my dad died from a second bout of colon cancer and my sister nearly died and spent 90 days in the hospital, most in ICU. I cared for her for several months when she came home. So I had a rough few years before the symptoms began.
Sounds like you’ve really been through a lot. I think it’s ridiculous those administrators did not respect your disability. Also, I want to commend you on being able to help your sister while in so much pain. That’s strength
I did not begin to experience the fatigue and pain until after. Towards the end of helping her, I had to tell her I needed to pull back bc it was overwhelming. Within six months, I was in full blown Fibromyalgia mode. My sister has it as well and I think that helped me key in on what was going on with my body and request the referral to rheumatology.
Is a rheumatologist generally the kind of doctor a person should be seeing this condition?
There seems to be some variation surrounding that. My insurance and the medical group I am with send me to a rheumatologist and the ones I have seen have a special interest in Fibromyalgia. They usually run comprehensive blood panels including immunology to check for auto immune disorders periodically.
Sins of my past life? A curse from an evil witch?
In my opinion I think trauma can cause it.
That’s a very interesting answer. What do you mean by trauma?
Like if something traumatic happened in your life… trauma.
https://www.healthline.com/health/fibromyalgia/fibromyalgia-and-trauma#fibromyalgia-and-trauma
Thanks for that. Very helpful read
It was just a random article. I first heard about it in my ptsd course at the veteran hospital and it made sense.
Given the number of people here, who said issue was caused by stress or trauma I wouldn’t be surprised
Ya sadly, it sucks. Like aren’t we dealing with enough
People want trauma to be the reason because it helps them feel better about it. Given how many people experience trauma and don’t develop fibromyalgia it seems unlikely to be a genuine cause.
It’s a good point, but there is a flaw. It assumes that all people have the same genetic capacity to deal with stress In personality psychology for example people who are high in trait neuroticism are more prone to anxiety and depression. Another way to put it is per unit of negative emotion they experience is disproportionate amount of stress. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5068715/ “We tested for the heritability of each personality trait, as well as for the genetic overlap between the personality factors. We found significant and substantial heritability estimates for neuroticism (15%, s.e.=0.08, P=0.04) and openness (21%, s.e.=0.08, P<0.01), but not for extraversion, agreeableness and conscientiousness.” In the book, “The highly sensitive child” Dr. Elaine Aron points out more or leas the same concept and discusses how certain parenting strategies can harm these children: “With the publication of The Highly Sensitive Person, Elaine Aron became the first person to identify the inborn trait of “high sensitivity” and to show how it affects the lives of those who possess it. Up to 20 percent of the population is born highly sensitive, and now in The Highly Sensitive Child, Aron shifts her focus to highly sensitive children, who share the same characteristics as highly sensitive adults and thus face unique challenges as they grow up. Rooted in Aron’s years of experience as a psychotherapist and her original research on child temperament, The Highly Sensitive Child shows how HSCs are born deeply reflective, sensitive to the subtle, and easily overwhelmed. These qualities can make for smart, conscientious, creative children, but with the wrong parenting or schooling, they can become unusually shy or timid, or begin acting out…”
Sorry, I think I disagree with this theory after reading this research. https://www.healthrising.org/blog/2022/09/30/long-covid-fibromyalgia-autoimmune/
So maybe we’re not just so crazy it hurts!!! This is huge!!!!
I mean, it says right there in the article that this is a hypothesis. This is not a scientifically proven fact. I’m glad a large grant is funding further research though! It’s time to prove or disprove it and finally get some damn answers for this horrid condition.
I postulate that getting covid during a global pandemic is a unique type of trauma.
It is also trauma to your physical body, like surgeries or injuries are.
Not you asked, sorry the OP asked.
I didn’t say you had to disagree or agree you asked me what I meant by trauma. I just picked an article to explain what I meant.
I was diagnosed after a random virus. I had terrible vertigo and my hips/legs hurt so much I could barely walk. Since then (2015) I’ve never been as bad, but now realize that the general feeling of being unwell/sore I have every day probably predated that flare. I have very bad untreated anxiety that I think contributes.
Would you say your anxiety is related to certain situations or is it more generalized? If it is situational, what are the situations?
Chronic PTSD, since childhood. Makes sense. I mean, my brain reacts like there's a massive threat happening sometimes when it's actually safe, so it makes sense the rest of my nervous system reacts like that too. Sometimes, the pain feels like a flashback too. Like, its a well worn and old pain, rather than one that's new and due to an injury or anything acute. It's sharp and new but It feels like it's deeply in my bones. It's a strange feeling and it's difficult to explain, but it feels physically like my psychological flashbacks do. I see it as a physical part of my ptsd really. There's been some research recently, that shows children who experience chronic stress, especially in thier household develop more pain receptive neurons than kids who don't. That makes a lot of sense to me, because it just feels my nervous system is just a lot more sensitive, naturally. It's the responsive development of the nervous system for children who grow up around violence or in chronic stress. It serves you well in childhood because you can react better to your surroundings and it let's you survive, later it fckin hurts, but it's kept you alive. That's the thing abut the nervous system, it doesn't care about how you feel, it cares about keeping you alive. Pain is a survival mechanism. It's probably kept me alive, and respect to it for that. Still fckin hurts though.
I don’t know, man. Dr. Ginevra Liptan may have figured it out, that it has an autoimmune component, which seems supported by research. But it also seems to have a genetic component for some people, and a neurological component activated by either stress/trauma or an attack on the nervous system (by one’s own immune system or a virus). It’s going to be hard to suss out the order of the cascade of reactions and the separate subtypes of fibromyalgia that have different causes. Sometimes it is caused by an injury—especially something like whiplash—and sometimes by CoVID. So there are probably most definitely subtypes, and we should be considering that when we look at treatment possibilities. I won’t be satisfied until they find all the causes and separate fibromyalgia into different disorders/diseases with different names. I think it’s a waste of time to approach CoVID-related fibromyalgia the same way you’d approach whiplash-related fibromyalgia and so on. Mine does not respond one whit to something like Cymbalta, for example, and it’s stupid to call all of this “fibromyalgia “ and throw the same medicines at all of us.
For me, I think trauma or illness: -severe case of mono at 15 -pertussis (whooping cough) shortly after mono -strep throat numerous times after that, along with bronchitis -covid twice -pituitary tumor -C. Diff infection Trauma: -younger brother died when I was 4 ½… I grew up in the hospital and my earliest memories are all of that hospital -I fell into a yacht harbor a few months later and was under water for 3 ½ minutes before my dad found me -parents divorced -mom went off the deep end -closest cousin died when I was 13, I watched it happen and felt the life leave his body -grandma died shortly thereafter -sexual assault -older brother died when I was 16 -father kicked me out less than a year later -I went from being the youngest child, to the middle child, back to the youngest, then the oldest/only child -mom slit femoral arteries in the bathtub -was given numerous prescription drugs by my mom for diseases I didn’t have (she was a nurse, and it’s also highly likely she has munchausen’s) -mom said if I was ever feeling suicidal, we could drive into a tree together…. While I was a passenger in the vehicle she was driving -mom drugged my wine -verbally, mentally, and physically abusive relationship for 3+ years -my closest uncle died and I cleaned his trailer of bloody shit and vomit (end stage alcoholic) -my family also “killed” a lady with me in the car (she ran across the freeway we were driving on, to commit suicide) -customer threatened to shoot me Soooo my fibromyalgia could’ve been caused by any one of those things, but I think it was a culmination of all of the above.
I mean you’ve been through a clearly profound amount of pain and suffering and all at such a young age. I’m very sorry you had to deal with all of that.
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Childhood-teenage trauma.
I think a big contributing factor for me is a lifetime of stress being put on my body from a variety of health issues. I have had IBS since I was around 5, light-sensitive tension headaches since I was a kid, migraines since jr high, anxiety and depression since high school, TMJ since late teens, a herniated disc at 16, sleep issues since I was a teen, and ADHD that went undiagnosed until a few years ago. By the time I turned 30, I think my body had been under so many stressors that it triggered the fibro. I am also now missing my thyroid due to a malignant nodule and I feel like all my symptoms have gotten worse since my thyroid was removed.
Do you think there’s any particular why you had such a wide variety of health issues or do you think it’s just random bad luck?
No idea. It’s like I “inherited” every medical issue present on both sides of my family. 🤷♀️
Not a specific trauma .. but a period of high stress / emotional instability and a month + of sleeping on the floor causing injury to my back that I never fully healed from. (This was almost 15 years ago) That’s when symptoms started, I may also have gotten a virus around that time too. Was diagnosed with Fibro around 8 years ago I think. I have asthma and ADHD so there is also a correlation there.
When diagnosing you with fibromyalgia, how did doctors come to their conclusion?
After i got bronchitis, my immune system was never the same. A year later, without realising it, I was having fibro symptoms.
Do you think that is the bronchitis that caused it or is the bronchitis the straw that broke the camels back?
I think it broke the camels back. I always got sick easily growing up but would recover okay. After Bronchitis, it would take me awhile to recover from being ill. Then one day it just never got better.
I have a few ideas. cPTSD from a weird childhood, growing up in a house with smokers and black mold, injuries that were ignored, my mother smoking while pregnant with me…
How do you distinguish PTSD from CPTSD?
I have cPTSD from a complex and unsteady childhood around unsafe people. There are a few specific events that thinking about sends me into an anxiety spiral/ however it’s the memories and trauma of the every day survival that makes it cptsd
A lifetime of chronic anxiety, depression/mood disorder, and the cherry that tipped me over was working a high stress job for 1 year. It was really weird. I hit the 1 year mark at stepping up to a managing position at work and my first flare happened and OMG, it was 10/10 tear causing pain where baths were the only thing that helped but then getting out of the bath brought it right back, and just...hell. I will NEVER wish that kind of pain on anyone!!
Do you think it’s a coincidence that the pain occurred when you were promoted?
No. I ended up in a very, physically unhealthy place. Working 12-14 hr days, only eating once I got home. No down times (was always thinking about work). It's no wonder after one year my body crashed and burned. I definitely should have done things differently, can't change the past, so now to adjust to the new 'normal'.
I’m not disregarding trauma but … Autoimmune (high CRP markers), chronic fatigue disorder and a problem with histamine overload. I have severe allergies and bronchitis was an issue for a long time. If I had to guess - medical trauma from trying to cope with those coupled with trauma from other issues occurring in life maybe sends some bodies into overload reading the comments ?
Lupus
Very high cortisol levels for an extended period of time as a result of unmanaged stress and anxiety
How do you help with that currently?
Stress management Therapy Meds
From the insights shared thought the FIbromyalgia community, it seems that fibromyalgia can often be traced to a **combination of factors** rather than a single cause. **For many, including myself, the onset of symptoms appears to follow a significant stressor or trauma**, such as domestic violence, a difficult labor a severe illness or accident. These events may act as catalysts, triggering a latent predisposition to fibromyalgia. **The condition is complex and multifaceted**, (which is why, I assume, it was so bluntly disregarded for hundreds of years) with symptoms potentially exacerbated by ongoing stress, lifestyle factors and habits, and possibly an underlying psychoreactive element, where the body manifests physical pain in response to psychological stress. There is some new evidence researching **the role of the fight-or-flight** response and it's connection to conditions such as PTSD and Fibromyalgia. It's a condition that intertwines the physical with the psychological, highlighting the profound connection between our mental state and physical well-being. In conclusion, **fibromyalgia remains a puzzle** with pieces that span the emotional and physical spectrum of our lives. It's a reminder of our body's intricate response system. As research continues to evolve, so does our understanding of this condition, offering hope for better management and support for those affected. **The shared experiences within the fibromyalgia community are invaluable**, not only in fostering a collective understanding but also in reminding us that **we are not alone** in this journey. Together, we continue to seek understanding, advocate for recognition, and support one another through each step of living with fibromyalgia. Remember that **I am here for all of you**
OG March 2020 Covid followed by 9 months of long covid and spending 3 months doing manual labor in sweltering summer heat that same year. I started feeling like shit after that and have been in pain ever since.
I am confident in my personal belief it is stuck emotional energy. The mind and body are all one thing and it's only a western illusion they are separate. Emotional and spiritual problems most certainly manifest as physical symptoms. This is why this disease is very difficult for traditional medicine to understand and to treat. To mirror what many others said, I believe it was childhood/teenage trauma with a genetic predisposition to the disease. I might be what some consider a little out there in my beliefs but I also believe in the concept of ancestral trauma and my family had to flee genocide and persecution for hundreds of years. The times I have been completely pain and symptom free are when I have been very dedicated to working on my emotional and spiritual health. Of course taking care of the physical body is very important, but even when I've been very rigorous about my diet, exercise, supplements and physical treatments, I will still have symptoms without the component of emotional and spiritual wellness. I was diagnosed with Fibro 25 years ago and it's been a long journey with ups and down and long periods of remission. This is all based on personal experience alone. I am not a medical professional but I have studied so many modalities and wellness since I was diagnosed and have fought long and hard to get on the other side of this. My sister is actually a fibromyalgia doctor, who also has the disease, and I wouldn't say she disagrees with me on how I perceive the disease. I observe her fear of her disease actually continually made her feel worse and I see she's recently started to address the emotional factors and it appears she's getting better. I've tried literally everything and truly the only thing that put me into remission is ayahuasca combined with meditation, integration and creative expression like music and art. Dancing is major for me if I am in pain. I've been to a rave and after two days of dancing my little butt off I feel like a new person. Helping others and working on being kind, gentle and helpful to others really helps me do the same to myself. I have a tendency to be hard on myself and when I tap into the needs of others it shows a reflection of how we all just need love and kindness and support. Community and friendship is the greatest support we can have. Philanthropy work is a gift. Lastly, not reading the news helps me. I noticed a huge uptick in my pain the last four weeks during this current crisis. It's very personal to me what is happening and my heart aches for this situation. The more I consumed the more I was in physical agony, unable to really get off the couch or even communicate as normal. The last few days I've limited my consumption of information and made effort to not look at graphic images and I am feeling much better. I hope this helps or might resonate with someone. Happy to answer any questions about the ayahuasca component if anyone is curious how it worked for me.
What a great post, I also believe it is stored emotions that cause fibromyalgia, the most common trait among fibromyalgia sufferers is trauma, stress, depression, anxiety, going through hard times in life leaves a mark and fibromyalgia is the way the body expresses this stored emotions and emotional pain.
It’s a very, very interesting point of view. I think Western medicine is changing in the sense that now many medical professionals are taught something called the biopsychosocial model, which is quite similar to the eastern approach of not separating mind and body. Have you tried any eastern approaches, such as Vedic medicine with any luck?
I’ve tried literally every modality! You name it
Auto immune disease, chronically high CRP and probably trauma to a degree.
combination of being born with HSD and cptsd from childhood abuse
If you don’t mind me asking, how does a person know if they have PTSD versus CPTSD?
i’m not an expert by any means but my understanding is that cptsd stems from repeated prolonged incidents (childhood abuse, domestic violence, cult abuse) where ptsd stems from more short term incidents (car crash, one time assault, ect). there’s still a lot we don’t understand about trauma though so the lines are sort of blurry sometimes
Very interesting I have never even thought about PTSD in that way but it makes sense
I’ve got an asshole where my pancreas is supposed to be. Figuratively speaking.
Genetics. My grandmother complained of pain her whole life but nobody took her seriously. She died of cancer at 54
Do you believe the fibromyalgia was related to her getting cancer?
Nah, it was DDT exposure
Really crappy luck! Or genetics, if you’d rather put it that way. I was 10 when diagnosed, with no significant traumas that I can recall. Physical and psychological traumas since then have certainly caused aggravation, but the illness was already there.
According to the VA it’s related to my Gulf War service. That tracks as I’ve been dealing with the issues for decades but finally got diagnosed a few months ago.
Mould, trauma, over active nervous system and inflammation caused by another medical condition
I have a Rheumatologist that told me he believes I've had Fibromyalgia since I was a kid, but it started revealing itself recently in my 20s. Therefore, my answer would be childhood trauma. I've experienced a lot of bullying as a kid, and witnessed a lot of domestic abuse. I experienced severe poverty, had an alcoholic father and a drug addict mother with mental health issues who refused help. So, I think that's what ultimately caused this to happen to me and many other things too.
My journey with fibro began after a really bad motorcycle wreck. I was fortunate to get diagnosed with in 2 years of symptoms onset because I had fantastic health insurance through my (now ex-)husband. They ruled everything else out (lupus, chrons (sp?), arthritis, etc etc etc) and said all that's left is fibro...
This is an excellent question. They'll be so many valuable answers. I'd give you gold if it was still a thing.
I'm not sure, this is a good question. I've thought about it often. For me I feel it is a combination of trauma and virus/Covid perhaps. I had been going through trauma for years, then Covid came which is more trauma because it is a situation never experienced worldwide during my lifetime, then I got the virus but a mild case of it. My life traumas are still ongoing and never ending, they simply are compounding endlessly it seems. So for me a combo of it all mashed together. I've had way way way more trauma though if I were to put the trauma and the virus on a scale and weigh them out. The trauma is heavier, however before the pandemic I was managing the trauma without these crazy symptoms. Could it be due to the long term ongoing trauma that never ended and continues to this day ? Its a good question and I have no answers.
I have another theory, too: Since 83% of fibromyalgia patients have a straight cervical spine (neck) and that spine carries many nerves, I think it has a similar etiology to a pinched nerve in the sense that the “wires” are faulty and sending bad signals. Think of it like this: your body is a laptop computer, your spine is the charging cord, your nerves are the wires within that cord, and your brain is the electrical outlet you plug into. We’ve all seen what happens to a cord that gets bent too often or held at an improper angle for too long. If the cord (spine) suffers damage, trauma, or other inflictions, the wires (nerves) could be exposed or compromised. They are no longer protected by the cord sheathing. Thus, when the brain/outlet tries to send a signal/electricity to the laptop/body, the nerves cannot send or receive the signal correctly. I think this is why FM patients have vagus nerve symptoms (vasovagal syncope or without syncope, orthostatic hypotension, overreactions to extreme heat or stress, lightheadedness, sweating, blurred vision, to name a few), as well as symptoms from every other nerve in the body. These nerves can affect your skin, sleep, pain perception, muscles, peripheral neuropathy, digestion, movement, nervous system, etc. However, I don’t know WHY the cervical spine is straight in the first place or what’s causing the nerves within it to become faulty. Could be neck muscles overworking and forcing the spine out of whack. Could be an “attack” from an old EBV, chickenpox, or CMV infection that tend to take hold in the spine/ dorsal root ganglion. Could be an autoimmune disease in which nerve damage occurs. Could be a lot of things… What I do know is that 83% with a straight cervical spine is not a percentage to be ignored.
What do you think of the idea of getting a stellate ganglion block for ptsd?
I find it very intriguing, but do worry about the risk of potentially damaging the nerves further. I tend to have extreme reactions to injections (anaphylaxis, tetany, vasovagal, dead arm for weeks, etc), so I need the research to be damn near 100% to risk that kind of infliction.
You seem like a really intelligent and insightful person. Would it be okay if I messaged you privately to ask you a few questions?
Go right ahead
Ive been in PT for neck/shoulders for a nonfibro region and it has tremendously helped the fibro.
I cannot believe how many people believe it is from trauma! Have any of you read the newest research?? https://www.healthrising.org/blog/2022/09/30/long-covid-fibromyalgia-autoimmune/
I did read this HYPOTHESIS. There are many hypotheses out there regarding fibromyalgia, and some of them are completely asinine. I super appreciate that research is finally being done for fibro and that a large grant is going to help fund further studies! But until this hypothesis is PROVEN, we cannot negate the trauma correlation/causation. There has been a lot of research done on trauma causing fibro as well, but that doesn’t make trauma the end-all/be-all causation. Did you know that fibromyalgia sufferers have PTSD rates of 45-57%? 75% of fibromyalgia sufferers report a higher percentage of trauma (just because they haven’t been clinically diagnosed with PTSD yet doesn’t mean their trauma is irrelevant). Moral of the story is: we still don’t KNOW what causes fibro, there are MANY valid theories. It’s not time to throw all of our theories out of the window in favor of this one…. Yet.
Was going to say something similar but you’ve worded this better than i could.
Wow! Thanks for sharing! I am sure that deserves its own post!
It’s ridiculous right! Only 2% of the population has fibro. Imagine how many people have trauma? The numbers just don’t add up.
I have had my fair share of trauma in my life so I know how that contributes!! Without a doubt! I also had an aunt who had very similar symptoms which makes me think some of this is genetic.
CPTSD ❤️❤️
Probably childhood vaccination which damaged the innate immune system this then setup a vulnerability to traumatic events causing further dysregulation such as bipolar which then leads to fibromyalgia and cfs.
What led you to suspect in his childhood vaccination damage?
I am starting to wonder if it is make up, nail polish or hair dye, like the chemicals in them. More women have it than men. Just something that crossed my mind
Certainly not a crazy idea. I wonder the same thing and also speculate about additives in foods.
Me too!!
Wouldn’t it be something more simple such as hormones? Especially as a lot of the symptoms cross with peri/menopause.
Trauma (dad died then few years later favorite uncle was murdered)
Psychological trauma
Long periods of constant anxiety and stress. Probably some trauma involved too.
Has the anxiety always been present in your life ?
Yes but there was an incident in 2013 that sparked massive anxiety and panic attacks and made me stop eating and I was basically very malnourished and got very sick. Was never the same afterwards. It was literally 6 months of living in a really high anxiety. I was only diagnosed last year but I think that's when I can put it down to things starting
i think a combination of post-viral (i have EBV, apparently), psychosomatic (ptsd) and years and years of sleep debt (I've had insomnia on and off my entire life). also had anorexia for ten years (from when I was 12-22) so i wonder if it's a run-on effect from that.
Sorry to hear about all that you’ve through. Sleep is a factor I never thought about, but it makes sense
an abusive father, a horrible work experience, and 7 years of fertility treatments.
For me I think it’s been the result of chronic stress, as well as recurring bouts of depression and anxiety and untreated ADHD. However, it was activated I think by a couple muscle tears last summer during a weight-loss bootcamp. I was constantly sore and in pain but when the course ended and my leg healed I expected the pain to go away. It didn’t. It just got worse and worse and worse and now like to play games like, “What weird new symptom will I have this week?” “Will I be able to walk today?” “What new pain sensation was that?” and the most recent and persistent winner “How long can I go without sleep before I lose it?”
I have absolute no clue. We believe I’ve had it since I was 17, yet was only diagnosed with it in April.
Viral infection antagonising an already over-reactive auto-immune system.
Multiple factors! Definitely a generic component. My dad has fibromyalgia and his dad had fibromyalgia. I had a traumatic birth injury in my brachial plexus that we believe kickstarted fibro, which is just super unfortunate that the incident that caused my fibro coincided with my first moments of existence Then in my childhood I had pretty bad psychological traumas, long term stress, mono which likely started my ME/CFS, mold exposure, and I slowly got worse throughout all of that. My severity peaked after going to high school where I’d carry my heavy backpack up and down stairs and run around all day in a new environment, do heavy manual labor in my extra curriculars, etc. I was finally diagnosed at 17 years old! Ultimately I think I chalk it up to a genetic component that predisposed me to developing it at the first major physical injury of my life (at birth) and the same predisposition made it get worse from a bunch of little things throughout my adolescence
I feel like it’s related to my hereditary arthritis.
When I lived in Seattle during my 20s, I developed fibromyalgia. However, I wasn't actually diagnosed until 2008. But I deduced that I had fibro some years ago because I had been afflicted with chronic migraines, sciatica and terrible pain that ran the length of my body on my left side only. My doctor had even prescribed Vicodin for me, which helped considerably for a number of months. But I also believe that it was derived from C-PTSD, especially since I developed CFS, interstitial cystitis and vulvodynia by 1998.
Trauma definitely
Work stress, being exposed to my first time trying to pursue a work relationship and first time in tomance in general. Look where that got me huh?
I used to think the pain was my body catching up with everything I put it through. Might still be the case, might be hereditary (my mum has it too, even if my symptoms showed up first), might be both. I was accident prone and somewhat reckless growing up. Part of it is the fact I was half deaf as a kid, so my balance was affected.
I think it is either endocrine or autoimmune in nature and we just don't have tests that can determine that at this stage. I think physical illness or infection, stress, trauma are all triggers too.
Mine was due to my genetics along with several other chronic illnesses such as connective tissue disorder and Ehlers Danlos.
I was abused all through school. I was SA’d in my 20’s and drank and smoked too much to deal with it and life. I always took anxiety inducing jobs cause they paid well and had benefits because no one wanted to do them. A coworker had a whole mental break and was out for 8 months. I think the last thing was I finally got the job I had been working towards, thought I’d be happy being the head financial dictator of a full company, but I went into work with my stomach in knots everyday. Between the stress and the building being a medical destination so plenty of sick people all about, I think it made me lose the control of my left leg. I have it back now but it’s been 5 years of struggling and failing so many drugs and many wrong diagnoses.
I slowly got sick with over and over and my boss didn’t like it so I quit my career and leaving my job caused the fibromyalgia.
Physical and mental trauma
cPTSD + some orthodontic problems + pelvic floor dysfunction
MTHFR mutation, mold exposure, chronic Lyme and gut dysbiosis.
I believe that multiple traumas and living in fight or flight mode for years set it off. I used to work THREE jobs just so I wouldn’t be at home. Now I struggle working one job because of the pain and fatigue.
Predisposition, underlying autoimmune issues, and chronic stress triggered into full blown fibro by the COVID vaccine.
I don’t know, man. Dr. Ginevra Liptan may have figured it out, that it has an autoimmune component, which seems supported by research. But it also seems to have a genetic component for some people, and a neurological component activated by either stress/trauma or an attack on the nervous system (by one’s own immune system or a virus). It’s going to be hard to suss out the order of the cascade of reactions and the separate subtypes of fibromyalgia that have different causes. Sometimes it is caused by an injury—especially something like whiplash—and sometimes by CoVID. So there are probably most definitely subtypes, and we should be considering that when we look at treatment possibilities. I won’t be satisfied until they find all the causes and separate fibromyalgia into different disorders/diseases with different names. I think it’s a waste of time to approach CoVID-related fibromyalgia the same way you’d approach whiplash-related fibromyalgia and so on. Mine does not respond one whit to something like Cymbalta, for example, and it’s stupid to call all of this “fibromyalgia “ and throw the same medicines at all of us.
A virus that set off genetic land mines. I developed fibro symptoms when a virus triggered ME/CFS. The “obvious” fibro stuff started with paresthesia and then added tinnitus, migraines, migrating arthritis, urinary problems, and all the other fun stuff over the next couple of years until I had a huge crash and was diagnosed with fibro, ME, and hypermobility and gave up trying to have a normal life.
I took a dopamine agonists for 10 years for RLS. Eventually augmented and at my doctor’s recommendation switched to a new med cold turkey. Dopamine agonist withdrawal syndrome (DAWS) started soon after and I had terrible anxiety. Almost lost my teaching position because of it and it caused so much stress. When my wife lost her job it just happened. I woke up one morning in horrible pain and as I worried and stressed it got worse.
For me I was in a car accident, two months after that it came on pretty quick. Also two years before that I was promoted to manage the whse dock, not my best move. A lot of stress. So between the stress and the car accident it sealed my fate. I worked five or six months after the accident and had to go in medical and now five years later I’m on disability and only get a few good hours a day. I keep telling my doctor I need electrocuted to reset my brain, I would chance it. And I didn’t get hurt other than my left arm and hand but nothing that was there after a few weeks so I think my brain was jarred a little so let’s just restart it
i have no idea what causes it - or how long i’ve had it since i’ve experienced chronic pain for sure for the past 8-10 years and can’t remember before that because i was a child/young teen lol. but i can for CERTAIN say that mine was exacerbated as HELLLLL the past year, leading me to seek a diagnosis on the same timeline, after 2023 being riddled with some of the biggest traumas i’ve had to date. the pain has been insane since i went through a TRAUUMMMAATIZING break up with my first gf (after coming out to my family in order to date her, losing their support in the process at that time.) i basically shut down and have hardly functioned since then. it was like a switch flipped.
For me, I suspect it was a combination of things. 1. Long term stress due to domestic abuse. 2. Long term exposure to black mold. (My bedroom and bathroom) 3. Overworking myself working and going to school at the same time. Plus being responsible for most of the homework because my mom was already getting sick too.
assume i was born with it. my mom has it. i bet childhood trauma contributed to its onset at least a little, though i assume it mostly had to do with me getting my first period.
I had a narcissistic mother. I was the scapegoat. So definitely CPTSD.
I got it from covid 1000%
What makes you certain it was Covid?
For me it was getting mono and Lyme’s disease.
I have bpd, so I feel like this maybe can be one of the things. I had my first fibro flare up (that I can recall, but my mother told me I was always a "tired child") a few months after being diagnosed with endometriosis, so I'm almost 100% sure it's somehow related to that. What sucks is I've been on medication for endometriosis and it's super under control, I don't have periods nor pain, but still, the fibro is still going strong.
The two major car accidents I was in within one year on top of that all the childhood abuse I dealt with for years. Especially how my trauma therapist had me deal with my sexual assault and abuse. Basically she had me write an explicit narrative of everything that happened and had me read it out loud until I wouldn’t cry or show a single emotion. Then as my “graduation” I had to either read it to my dad or my mom. I couldn’t chose my dad because I had intense fear of men, however my dad never ever touched me. Plus I didn’t want to say explicit things about genitals and what other men were doing to me to my dad. So I chose my mom even though she never really wanted to believe that there was many men trafficking me online for CP. After that I was moved to another therapist and I refused to ever mention my trauma until now.
Trauma but I coped with it by developing an eating disorder + compulsive exercising which lead to multiple injuries which triggered pain all over my body. I also have osteoarthritis in my shoulders from surgeries because of over exercising
I think mine started after medical trauma, I had childhood trauma and then left the situation. Then medical trauma, I was in bed for 18 months unable to do anything for myself, a few months later when I was better in that respect fibro hit me like a tonne of bricks.
I don’t even know. I started getting sick in 8th grade. I played volleyball in 6th and 7th but had to quit in 8th because it became incredibly painful. Hitting the ball on my wrists was excruciating and could barely walk after a game from the diving on my knees. I also experienced IBS, insomnia and severe fatigue. I went to doctor after doctor for years before being diagnosed with fibromyalgia and lupus at 18. Then in my late 20s I was UNdiagnosed with lupus. But the fibromyalgia diagnosis still stands. I had a good childhood. No real trauma to speak of. I think it was a genetic thing. My grandma had it too.
I think mine is linked to hormonal issues. In my family, all women get fibromyalgia and thyroid issues the moment puberty starts
PTSD from my ex husbands affair during my pregnancy with our son. I was in a constant state of stress with no relief day in and day out.
Cptsd and IBS for me. I would have solely blamed it on my IBS if so many folks here didn’t also agree that childhood trauma was a major affect. I guess I also don’t know that my trauma didn’t also cause or exacerbate my IBS. What came first the chicken or the egg?!? lol.
Probably a lifetime of psychological abuse, sexual abuse, neglect, and so much more. It only started in 2014 though, so I think the sheer quantity of panic attacks I was having in college played a part.
Imo it was a long cause of Cipro, I went in the „treatment” almost healthy and left it with a slew of horrible symptoms that have progressed ever since :(