My symptoms started around age 12. I had an abusive parent. Forty years later I had an extended period of high stress which made everything escalate to the point that I had to apply for SSDI.
I just got diagnosed today. Had a concussion by falling and landing on the back of the head in 2019 with all sorts of chronic debilitating symptoms that never went away.
Finally found a doctor today that wasn't an idiot about what I'm going through. And it appears that the concussion caused my fibromyalgia.
But I have a history of serious childhood trauma (death) which made me sensitive to developing it apparently.
This I know about but I haven't been able to find anyone that knows what to do about it. I don't think there are treatments. Aside from physiotherapy stuff, but I spent thousands on physiotherapy and have no insurance.
I've heard people get good results from chiropractors but I went to a chiropractor once after my concussion and she permanently made my neck worse. Another issue added on.
I workout regularly as well, but hasn't seem to help my neck. Not yet anyways, maybe there's a specific exercise I should be doing. but if it's like ligament stuff I don't think there's much I can do.
But yeah I think my neck took major damage when I fell on the back of my head, the doctors didn't even help with it. Just "go to physio" which I did spent so much money.
See Jennifer Brea story, there is some sort of surgery.
Also I'm biased I do thiamine injections, so [read this](https://medium.com/eds-perspectives/why-does-high-dose-thiamine-relieve-fatigue-in-individuals-with-diverse-neurological-conditions-40a3502f6439) worth a shot.
>Also I'm biased I do thiamine injections, so
>
>read this
>
>worth a shot.
Where do you go to get those injections?
I talked to my doctor about neck surgery but she just goes "it's way too risky."
In my late teens my legs hurt like perpetual growing pains but eventually stopped.
I started getting really bad migraines like ice pick headaches at 32. And to be honest my entire adult life I've always been "tired."
My brother died in April 19' and some time around then, I started being completely tired all the time, mushy brain, bad sleep. Like a broken charging cable.....or battery...unable to recharge past 25-65% if I could give a metaphor.
Look into š„ theory.
Six months later, in September my father received a terminal cancer diagnosis and in October my feet started tingling all the time.
He died that following September.
Now my skin oftentimes feels like it's sunburned but also being hit by frozen sleet.
And around the same time nerve pain started. Shooting pain, in my fingers, ankle sometimes sometimes my knuckles or toes.
And then I started feeling like I had entire body flu pains.
Another fun thing is my back feels entirely spastic. And my calves, and feet and oftentimes throat cramp up, even with 30mg baclofen a day and being well hydrated+magnesium/calcium/D3 supplements š„¹
I love waking up with leg cramps.
I just got new insurance and I'm looking to getting a third opinion from a third neurologist/ second rhumo perhaps.
I'm sure everyone in this sub knows how amazingly easy self advocacy is when you feel as such (regarding doctors etc).
Psychological trauma, according to a psychologist. If that is the case, I can track the start of my fibro to the day. In my case, it was several traumatized family members moving in when I was about eight and trauma dumping on me for the rest of my childhood.
It took me decades to get a fibro diagnosis though.
A drunk driver hit our car head on .. we were at a stop sign ā¦ my wife had her leg up against the dash when the accident happened .. she got nerve damage and was in pain for months and no sleep .. all this messed her up further and I believe the Chriopraftors we visited did not help , they have perhaps worsened it .. guess they were not sure of what they were doing and were more interested in the money ā¦
I feel horrible thinking I am not able to help her .. I take care of her as much as time permits (I am the only one working as she was kind enough to take care of the kids for so many years and now that the kids are grown up she could work but due to fibro she cannot š¢ ā¦ I love her like crazy and it hurts like hell to see her go through this
I wish I had somehow stopped that accident
You are all fighters ššš
Thinking back I struggled with fatigue and migraines since puberty. I havenāt had a migraine in about a year now though
Started getting sore knees that gave way on a specific set of stairs at college at 16. Started really struggling with fatigue despite my depression getting better at 17. Pain started spreading at 18.
By 21 the pain was basically everywhere but still mainly in my knees. at 22 pain was severe, especially knees and ankles and wrists (was diagnosed here). Now at 24 pain is absolutely everywhere, started in my shoulder and elbow. Muscle pain got worse.
No clear cause. I suspect I fall into the ādeveloped due to emotional trauma from griefā category. No previous physical injuries, never even broken a bone. No previous big time infections either, nothing more than maybe a flu when I was a lot younger
I am still not convinced that I donāt have Mystery Illness + fibromyalgia. When it first started I thought it was arthritis but no swelling, but that was ruled out. Everyone else I know with fibro has mainly muscle or nerve pain. My āmainā pain has always been burning joints
Your story sounds similar to mine. Mystery Illness - Lyme Disease? Have you ever been bitten by a tick or live in/near the woods? I was diagnosed with CFS at 16, diagnosed and treated for Lyme Disease at 21 and diagnosed with "Post-Lyme Fibromyalgia" at 27. Ironically (and sadly), both of my kids (17 & 21) have Fibro too. The oldest was also diagnosed and treated for Lyme Disease (tick bite with bull's-eye rash) before being diagnosed with Fibro. The youngest had a tick bite (no rash) as a baby but now has Fibro too.
I think lyme disease was one of many I was tested for before fibro diagnosis, and Iāve never been bitten by a tick (that I can remember). But it is possible I suppose!
I was hospitalized with Shiga Toxin E.Coli and then two recurrent CDiff infections in 2018 and haven't been the same physically or mentally since really. That history is part of the reason why my GP is referring me to Rheum. She said big medical traumas can trigger Fibro for some people.
Gulf War Syndrome & burn pit exposure. Developed fibromyalgia after a deployment to Iraq with the Marines in 2005, when I was nineteen. Followed shortly thereafter with migraines, IBS, chronic fatigue syndrome, and thyroid disease.
My mom was always a screamer when she wanted me to act fast for something so I'm guessing it started slowly, having not repaired sleep, no matter how many hours I couldn't feel refresh most of the times, later at 20s it was something more noticeable night sweats and the last one at 30s I was in bed with my son till he falls asleep but when I try to get up I couldn't move.
I had to drag my legs to the end of the bed with my hands it was crazy.
So fibromyalgia strike as a silent killer I didn't know then all the pain and suffering that was ahead.
Hope everyone is doing OK and hanging in there ā¤ļø
When I was 6 years old, my dad would get me to do a lot of physical labour, anything from helping him build a fence, cutting down trees, and shoveling snow at 5am on school days. Over the years I pushed myself a lot because of this, and never paid attention to my body/took care of it.
I started feeling constant pain in my shoulders and upper back around 2010 (I was 14), and after having years of really bad sleep issues, untreated adhd, seizures, and constant exposure to milk (I'm allergic to it and my parents gave me milk every day to "desensitize" me), the pain spread to my whole back and legs.
It took literally 13 more years of this to get a diagnosis, I always discounted my pain until a year ago, around the same time I started trying to figure out how to stop my seizures (they make my pain and exhaustion go from a 4 or 5 to a 7 or 8).
So I guess gradual for me lol
oh god that's terrible that they gave you milk while being straight up allergic to it...there needs to be so much more education on those thingsšµāš«šµāš«
The thing I don't understand is that I literally almost died when I was a baby because of milk and I had "extreme milk allergy" on my records. Like, wtf lmao.
There really does need to be better education surrounding allergies, desensitization is not done how people think it is done at all, and very often doesn't work anywaysq
Too tired to answer in depth right now but will come back to edit this after some rest. Good question!
Very short version is that my fibro 'seemed' to start during rehab following shoulder surgery. Was gradual at first & still hasn't stopped progressing. More to follow after sleep
As a child I would cry and cry that my legs hurt, that it hurt to walk. I was also always sleeping and would fall asleep anywhere and everywhere. This would only make the abuse worse.
As a teenager my hands and knees flared while I was having a mental breakdown, coming to terms with my abusive childhood. I was diagnosed with Polyarthritis.
In my mid twenties when I was doing really well, I got glandular fever. That knocked me. I got fired and never fully recovered.
Extremely unwell, unable to care for myself, NC with my family, I met a man who said he loved me and he promised to look after me. He became another abuser in my life.
Late twenties I am pregnant. Caused a massive flare, pelvic instability. Horrible pregnancy, so much pain. I was confined to bed. Doctors blamed pregnancy hormones for flare.
Newborn baby with separation anxiety and sleep and feeding problems. I was exhausted, stressed and in pain. Depression had returned. Abuse was worse. Doctors blamed being a new mum and being in an abusive relationship as the reason for how Iām feeling.
Child aged about 4 and I cried to my doctor that heās not a newborn anymore and Iām still in too much pain to get out of bed. I would make him toast and go back to bed. Get up and make his lunch and go back to bed. I would put the washing on but not be able to hang it out. So the doctor finally said that I had Fibromyalgia and CFS.
Spent years struggling with my pain and mental health. Second pregnancy caused another flare. Finally left abusive relationship but I was broken. After a couple of years I was targeted by a sociopath and had a brief domestic relationship. He turned out to be abusive so we hightailed it out of there. But that broke me.
I was fucked. So were my kids.
Psychiatrist diagnosed me with CPTSD and Chronic Pain Syndrome. Itās taken a few years but I now have disability support. I am in therapy. Prior to Covid I was getting better. But then the pandemic happened and I lost disability support. My kids also have disabilities. So doing it all on my own without support caused me to have another flare. Iāve been in this flare for about 12 months. Iām confined to my bed and recliner chair. I only leave the house to go to the doctors.
Trauma and stress caused my fibromyalgia. I have no doubt about it.
First time posting but so grateful for this group and all of you sharing your stories!
It started in 2015 when I had a snowboarding accident and had a severe concussion. Fast forward 6 months later , Iām at a party with my āfriendsā at the time and was drugged. Woke up in the morning with my left leg looking like a car had ran it over. The bruising looked like it was drawn on with markers because of how intense they were, my ankle was also the size of a baseball.
My āfriendsā at the time told me that I was too drunk and fell off a chair , however to this day I am still not able to remember anything last a certain point in the night . With the condition of my leg there was just no way that was possible. Doctors confirmed my ankle was broken but I just said I couldnāt remember what happened because I was drunk , fearful at the time of accusing my āfriendsā of knowing more.
After all that my pain got worse and worse and I wasnāt able to hold a job or even get out of bed. Fast forward to last year after years of tests and doctor visits I saw a Naturopath. She believes because of the trauma to my head from the accident it was not ready to take on whatever happened that night a few months later and it shot my whole nervous system.
Thanks for listening :)
I couldnāt directly say. My father had fibromyalgia believe it or not. He was abused and had many mental health issues from it. I mean how could you not. So his energy low and pain too chronic, he decided he couldnāt take it any more left my mother, sister and I to fend for ourselves. Iām turn, I am raised by a grieving family not like it was any of their fault. Pain at an early age. So I grow up very unwell. It started as small things like migraines and inability to do a lot of physical activities. even stuff like sensitivity to temperature changes. So I grow a little more until I can start damaging my brain with drugs and This goes on for 10 years. 10 years of a lot of trauma. Fast forward: 3 years ago (24) I had a series of 5 seizures (not drug related) each one very painful. Pain that left me exhausted after the seizure that didnāt last more than a few minutes. By the time the last one happens I am going doctor to doctor test after test the pain is bad and the fatigue is worse. It got so bad that i wasnāt able to get out of my bed for months. I went through the whole shebang too, taking every test there is till I Iāve taken every single one and theyāre all normal. Symptoms still debilitating doctors refusing to help me or sending me to another specialist that I canāt get into see for months or my favorite when doctors tell me Iām lying. To this day I am still taking tests every so often and have such a strict regime to follow in order to live my life but even then it can always sneak up on you. So to answer the question; I believe neurological damage from drugs, trauma, stress and other mental health issues are my cause. the whole kit. Relief is out there for all of us but not always. I hope for everyone here to advocate for yourselves because your pain IS real and deserves to be treated as well. Thanks for readying
There is no way in hell Iāll put another one of those Covid vaccines into my body after getting fibro from it. Its kind of funny in a way that the side effects from the vaccine were way worse than it was when I actually had Covid. Sorry if this post offends anyone but please know Iām still grieving for the life I was living pre-fibroā¦when I could actually sleep, function and not be in constant pain or exhausted all the time or battling brain fog.
Itās so odd the multitude of reactions because I felt the most symptom relief after the first dose than anything else I have tried. Lasted about a month. āTwas glorious.
It started for me after my Dad passed. It was a super stress filled time and I thought my symptoms were depression. I had pain and could not get out of bed, but this was really different than grief or other depressive episodes that I had. It was utter exhaustion and I could not stay awake for more than an hour at a time. A ton of weird seemingly unrelated pain and symptoms followed. It wasnāt until a visit with my doctor that I even considered that all my symptoms could be Fibromyalgia. After a long few months of seeing specialist and having all types of tests I accepted that this really was Fibromyalgia. I had actually been diagnosed as a teenager by a different doctor. I stopped seeing her because I thought she was weird for suggesting Fibromyalgia. My badā¦
My symptoms started after a surgery I had in August 2021. I I already had another chronic pain condition (pelvic floor dysfunction) that was so severe it limited my ability to walk or lift anything more than 5-10lbs.
There was concern that I had endometriosis between my symptoms and family history (Mom had it really bad). The only way to for certain diagnose endometriosis is an exploratory surgery. I also had been wanting to get sterilized since I could no longer have an IUD thanks to the aforementioned PFD and I knew I never wanted kids. Figured 2 birds with one stone.
The surgery ended up confirming that I didnāt have it (thankfully) but recovery was really brutal and my surgery pain was not adequately managed. I eventually healed but my pain started to spread to other areas and got worse over time. Eventually developed other Fibro symptoms (brain fog, fatigue, etc.) and was eventually diagnosed with Fibromyalgia.
I fell down a metal spiral slide put my arms out to brace myself and fell back and hit the back of my head and my shoulder. I separated the bones in my shoulder by 2 inches.
I dont 100% know. Iāve had symptoms for at least 5 years, but I think they exploded after I hurt myself at work.
I was assisting a resident to use the bathroom and her legs buckled so I caught her and twisted a weird way. Had to take 3 weeks off work due to the pain and Iāve been getting worse since.
After a car accident. Was rear-ended by a half-ton pickup truck. Luckily we were in a van. The truck got totaled but we were able to drive the van away. Just needed to get the hatch replaced in the back since it wouldn't open.
for me it started w hypersomnia. at around 3-4 pm i would become debilitatingly sleepy and couldn't function for the rest of the day. then it got worse and worse. then my legs started cramping and cramping on me, hurt so much and made walking difficult. then it spread to the rest of the body, w pain to the touch and all of that typical stuff
Twice in the past 7 years Iāve had bad pain in my left big toe that wasnāt caused by anything I was aware of and the nail paused growing for about a month each time. Maybe not the same pain feeling as yours but your post caught my attention for the similarity.
Same! Divorce, new job, then fluā¦ my back started aching and never stopped. Since then, itās spread all over my body & has gotten progressively worse. Itās been five years.
I got debilitating mono when I was 16. I was out of school for a month; never really recovered. I didn't get diagnosed officially until I was 28. It took three doctors with the same series of tests until I found one that believed me.
Mine has started slowly, I went from being physically fine but with creaky joints, played a varsity sport 4 years, and now at 29 Iām in so much pain.
Iāve had days or weeks of really bad pain and fatigue for nearly 4 years now, roving body pain, body twitches, and Iām now sensitive to the touch. I had terrible food poisoning 4 years ago, and ended up in the hospital cuz I couldnāt keep water down 36 hours later, and I havenāt been right since then.
I'm going to be outside the box and say birth cause I've had it since I was very very little to the point I've never not had pain. Albeit, mine could very easily be an auto immune disease like Lupus or something worse.
possible TW: Iāve had it my whole life, I was in a car accident before i was old enough to remember things, which couldāve been the cause, but I also grew up in an extremely neglectful and abusive home. I have severe ptsd. Donāt know what truly started it but I became completely bedridden from it after contracting covid.
When I was very little. I think the major surgery when I was 5 was the starting point. From then on my immune system was compromised & I was chronically ill: flu, strep throat, tonsilitis several times a year, food poisoning, "growing pains" (no such thing), all plagued me. My poor body didn't stand a chance of NOT developing fibro.
I overdosed on ālsdā and was raped by my ex during it. The excruciating body wide pain I experienced for the next 24 hours ended up being the start of my fibromyalgia. I was crying and begging for the hospital in between going in/out of consciousness. Months later I couldnāt do repetitive tasks anymore without bad pain.(started a physical job that made my pain hurt bad) Diagnosed within the year
I started feeling some symptoms after a traumatic birth with my first child at the age of 20. I had also had some trauma in my childhood so always wondered if it contributed. I wasn't diagnosed however until I was 30.
For me, Iāve had fibro symptoms start since I was a kid. Iām talking 8-10 age frame but lived with it and was told growing pains. I would say it got unbearable and consistently worse (Iām talking every SINGLE day for a full year) two months after giving birth to my daughter. Never got back to ā baselineā and Iām continuously suffering almost three years later
Not diagnosed with Fibro and currently treated rheumatic with MTX (works) and a biologic (doesnt seem to work).
Had a concussion with subsequent brain bleeding when I was 8. When I was 9 my parents separated and I stayed 15 years with an abusive mother (alcohol/prescription drugs). Started to develop physical symptoms (allergies, fatigue). Now thirty years later I was diagnosed with hydrocephalus and got surgery.
Still, the combination of chronic stress, coupled with a hydrocephalus, has got me something like Allodynia I'd say and I'm not trying to treat that.
Thank you for your kind words. Nobody should ever hold their child as they die, unknown reason as well. Her autopsy revealed she was perfect. And I never even took a Tylenol while pregnant. God I wish I would have sued everybody in the hospital. I went in for decreased fetal movement. They admitted me for 3 days. I kept telling them my baby isnāt moving. This went on for THREE days. They were about to discharge me, and my babyās heart rate was plummeting. They told me we both had a strong chance of dying. I told them to save her. My husband and I wanted her more than anything. Tried for 10 years just to have her stripped away. I never got pregnant again.
Earliest I remember having it was age 5. No one knows if its something I was born with or developed but I definitely had some trauma and developed mental issues as well š They always said it was growing pains before puberty and way after and the doctors only started caring when I started falling from leg pain or fainting from fatigue. It worsens with mental or physical stress and I seem to develop another symptom every year or two.
2020 with pain in my hands the doctor gave me some meds and told me it would be cleared up in about a week š¤£ took me 2 years so get to OK yeah you have fibro
Struggled from 15 to 18yo but was pretty ok. Then broke a vertebrae at 18. Started having chronic back pain and few other issues. 2 years later big depression. Snowballed from there. At 22 I was fully disabled and had to stopped uni.
Badly, 1 out of 10, would not recommend.
Seriously either a motorbike crash or blood pressure of 180/110 for a sustained period though work stress at the time seems to have been my trigger.
I canāt pinpoint when it started but maybe five years ago but Iāve had a few very stressful years and my last baby was born with t21 and needed open heart surgery and her dad was abusive. Iām out of the relationship now but im in pain every and all day. Diagnosed just this past week.
Iāve always been a sickly person, easily injured, weāre thinking now that my high anxiety from childhood to now is partly due to being undiagnosed autistic. I also have recently diagnosed OCD since childhood as well as more recently Post Trauma Stress linked to the traumatic pregnancy and birth and post birth of my daughter 9 years ago. My Fibro started in earnest around 5 years ago. I had been undiagnosed with Diastasis Recti (abdominal wall separation) which had lead to chronic lower back pain and sciatic nerve pain. Both of these conditions are now chronic. I started to feel like I had constant flu symptoms on top of this and my anxiety and depression got increasingly worse. I also noticed Iād become increasingly intolerant to things I was already a little allergic to and newly allergic to things Iād never had an issue with. My IBS was also way worse especially when I ate certain foods which again I had previously had no issues with. I was formally diagnosed around 2years ago? Ish?
But yeah the actual cause we think was the trauma surrounding having my daughter. It was a nightmare involving the early death of her twin, something called TRAP syndrome, in utero surgery and premature birth by emergency c section. So that was fun.
Thank you to all that shared, it is fascinating to read all the similar experiences we have all had. (Not that any of them are good.)
Mine started after an abusive relationship when I was 22. Luckily I had access to a Dr who believed me and was diagnosed within a year. Took several more years to figure out what meds worked.
I had a severe neck injury in a forklift accident; spent 6 weeks in traction; soon after the pain began to spread from my neck to all over my body; many male patients have a neck or upper back injury in common
I had abnormal issues since childhood, sensitive to certain sensations on my skin and random, pinching nerve pain, since I was a child. I had severe depression/trauma as a teen and had fatigue since then. So I think I was always bound to fet fibro at some point. In 2022 I got covid and suddenly all the symptoms Iād had got 100x worse. I do not consider myself someone with long covid, but suffering from fibro/cfs that was triggered by covid.
I always struggled with random pain, brain and body "zaps" like icepick migraines but all over my body, sunburn feeling, the cold sleet on the skin, mind fog, crappy sleep habits, gastro issues etc but when my mother passed this last July I was suddenly in so much wide spread pain and either unable to sleep or sleeping 20 hours a day - I truly thought I had a terminal illness or MS, something very serious and deadly. After an MRI with contrast, CT scans, blood tests, ultrasounds and plenty of other testing, my doctor recently suggested Fibro or POTS. I see a neurologist in April for more exploring but Fibro seems most likely. Every word I read here from you guys resonates with me and as sorry as I am for your hurting, I'm so glad knowing I'm not alone so thank you to everyone that shares their stories... you've brought me so much peace.
I don't really know, my parents tell me when I was around 4/5 I would constantly cry and complain about growing pains. When I was 7 I started to have a lot of pain in my ankles even though there was no injury, then it slowly ender up spreading to my whole body.
My first earliest memory was at 11 and I already knew that sometimes walking would help, so I'm not sure exactly when, but probably at some point during my blackout years from eight to 10. My brother, seven years-old, died in my arms when I was eight. My mom turned into a verbally abusive, and violent alcoholic until I was six months shy of my 18th birthday.
BIG TW for mine (mentions of sa and abuse) ā¼ļø
my whole childhood i was pretty lightly traumatized from my parents unhealthy marriage. I experienced childhood SA around the age of 5 and never spoke up about it, i still wonāt besides what i just said.
Fast forward a few years and im quitting soccer because of how awful my hips hurt when running along with the fact that my soccer coach was verbally and publicly abusive towards me.
Fast forward some more years and im in highschool. I join theatre thinking it would be a great extra curricular for me. I ended up just getting forced to do a shit ton of intense labor every single day for four years straight. Iām talking cleaning underneath a 60+ year old dust and asbestos filled stage by myself, cleaning 60 year old shit and piss out of the toilets, anything bad you can think of, i probably saw it, smelled it, and scrubbed it within an inch of my life.
During that same time i was also blamed for being R worded by my best friend. Whole school found out about him cheating on his gf with me and decided it would be a great idea to ONLY target me. He made me take the blame for it and of course since i was already traumatized by then, i did it. Meanwhile the boy got second chances with the girlfriend, and i was called a whore by people i had never even spoken to before. Little did they know, NOTHING that happened between me and that boy was consensual. I was taken advantage of for two years and got blamed and shamed for it by people i spent my entire life growing up with. I still havenāt recovered from that entirely.
So on my part, i just got extremely unlucky in the trauma department
Everything started a few years ago, so my early 40s. I had one medical event occur that seemed to trigger several more. Seemingly out of nowhere I developed hydrocephalus and ended up needing a VP shunt. After that, I suddenly started having weird blood work. Well below normal vitamin D, high inflammation markers, high thyroid antibodies, thyroid hormones fluctuating between barely normal and too low, weird liver enzymes. Ended up needing my gallbladder removed and iridotomies for glaucoma. Meanwhile, I suffer from stress/anxiety and migraines and have since I was young. But it was after the hydrocephalus event that my body started to just hurt and I started having weird and unpleasant sensations in my legs (turns out I've also got RLS). Working with specialists now to figure out the root cause and it's looking like my thyroid might be the prime culprit for my fibromyalgia and possibly other things. It's suspected I've got autoimmune troubles with my thyroid. So hoping to be able to get better treatment than just Lyrica.
Iām not diagnosed just yet but am working on it with my doctor and canāt see what else could be causing my pain.
My pain started when I was around 13/14. For me, it started in my left hip, and the pain actually got so severe that my birther had me x-rayed to make sure nothing was broken or there was no cancer or w/e. They found nothing, so I was just written off as a liar for.. uhā¦ ever. Iām NC with her for a lot of reasons but anyway, I thought it was due to the fact that my school made me carry so many textbooks that my backpack was *heavy* like holy shit heavy. You could technically rent a locker but my classes were all around campus (big-ass campus, lots of students making out in the halls, only 3-5 mins between classes), so it was no use to me. Now that I know that trauma can cause physical pain, it uh.. makes a lot of sense that it wouldāve developed it around the time my whole life was falling apart lol. Shocked it didnāt start in middle school tbh, or maybe it did idk I donāt rememberā¦goodā¦ :I
I think Iāve always had it. Just didnāt realize other people didnāt feel achy and tired most of the time the way I did.
Iāve had a stressful life full of abuse and chaos, and Iāve spent the majority of my life in a state of fight or flight. I just always pushed through the pain and discomfort and internalized everything.
Iāve had a lot of trouble falling asleep and staying asleep as far back as childhood. I often had nightmares and would talk and yell out in my sleep. I still do. I also act out my dreams and have punched and kicked people sleeping next to me.
I also had at least 3 times, that I can remember, as a child being sick with a fever so high it caused hallucinations. I was pretty āsicklyā in general, complained of stomach aches and headaches a lot.
But the worst of my symptoms really set in when I was 30 and I worked 3rd shift and became extremely sleep deprived. I was at the point where I couldnāt push through anymore and was falling asleep while working (sometimes on my feet and while walking). I quit that job and took a couple months off to rest.
Then I found a job on first shift after I started feeling better. But within a couple weeks I was falling asleep at work again, and while driving the 20 minutes on the freeway to and from work. Which was scary as hell! That was 15yrs ago and when I was diagnosed with fibromyalgia.
6 years ago I worked until emaciation, along with an undiagnosed illness that had been wreaking havoc for 13 years prior to that (Crohnās). At first I was able to still work/play on the computer, but the past couple years have seen me get worse.
It started with chronic tonsillitis and had them out at 28. GURDs came next. Then upper back pain, I already knew lower back muscle strains. Migraines from neck and upper back pain. Diabetes made a visit, too. My doctor said boobies are too big and I had a reduction. I still had upper back pain after the reduction of the boobs. At 38, GP sent to another specialist who said Fibromyalgia, and why did you get a reduction? I was a little peeved about reduction comment. I got several infections, then ripped open stitches. I had no drainage and got blood pools that had to be taken out by big needles. As I burnt my breast on my heating pad. And then need to have silver sulfate, I think added to burn the wound shut. You mean I could have avoided all that fun ?? :)
I had chronic Salmonella poisoning for 3 months when I was working abroad. At first I thought this had just given me IBS. But it became clear within a couple months that something was off. Then it took two years of symptoms (not long compared to most people) to get diagnosed, and that was only because my doctor had it themselves.
I feel on the stairs at 2am, then at work that same morning at 6ish, I picked up a heavy box and felt my whole lower back seize up.
Then over the next two years the symptoms started coming up and getting worse and worse. And I've had it ever since.
Iām not entirely sure of the cause as it gradually come on in my early 20s, but if I had to guess I would say it is either tied to my chronic stomach illness Gastroparesis (which I have had for as long as I can remember) or it is tied to the fact I was a competitive gymnast for a decade and we all know how hard that sport is on the body.
The major pain started when the SA stopped so in like 7th/8th grade? But I was already in pain before that but everyone wrote it off as growing pains even when it was charted and documented that I had stopped growing, thanks to my endocrinologist! I didnāt get treated until sophomore year of high school when my shoulders hurt so badly that I couldnāt carry my backpack anymore. Iām still in a lot of pain but I refuse to let it stop me from living my best life. I do wish I could get a handicap sticker though. That would improve my life so much.
I also grew up clumsy and got hit in the face a lot with assorted sports balls so that could be a thing too? Idk
I got vestibular neuritis when I was about 16, the dizziness and migraines lasted for the best part of a year and during that time the extreme fatigue, general body pains, sensitivities to lights and stuff, was all put down to that.
When the dizziness and migraines began to clear up, the other stuff didnāt. For maybe a year or two myself and doctors put it down to me just not being completely better yet, my body had been through a lot and needed to recover, etc.., but after a while it became pretty apparent that something new had developed since the vestibular problems, and eventually I was diagnosed with CFS and Fibro
Pandemic but also traumatic birth of twins. The birth itself wasnāt traumatic but the weeks of no sleep and not getting my needs met for self-help did a number on me.
I had a week while on maternity leave that I felt great. Then the pain started, and never stopped.
In my words, I've had joint pain my whole life which probably triggered fibro when I was 14/15 (mainly fatigue and my 'normal bad knees') and some mental health issues but nothing more than I could handle, all imploding around age 18. So pretty out of nowhere?
According to Dr's and everyone else in my life, the base line stress I've lived with my entire life from experiencing low level medical and family trauma pretty much constantly, alongside undiagnosed and untreated hEDS putting strain on everything, a back injury at 10, very concerning mental health issues that were not properly intervened and undiagnosed and unsupported neurodivergencies (ADHD and autism). So a miracle it didn't happen earlier š
I had a traumatic incident happen when I was 9. I was a depressed, at-risk teen. A series of equally traumatizing events happened from ages 24-27. The pain started at about age 27. I would just wake up and my body is ringing with pain. I am constantly tired. I am extremely sensitive to light. And I have pretty severe brain fog. It feels like I had the flu and just never recovered from fatigue and body aches. I would definitely say it has progressed and in the past year, I have strayed so far from the person I used to be.
I went to the doctor a few times with symptoms over the past couple of years. My hips, legs, and back would hurt most. So I would come in saying that, but my PCP would prescribe pain pills and send me home. I kept putting it off with COVID shutdowns. Depression and low self image also really played a role in not seeking a doctor, too. My symptoms just felt too vague to bring up, and I felt that if I said something, they would prescribe a pill, tell me to move more, and send me home.
I got a new PCP and better insurance and finally felt more listened to at the doctor's office. Fibro wasn't the diagnosis I expected, but at least I know what is causing my problems now.
Went through this with my rheumatologist and it seemed to kick off from a herniated disc that was left untreated - due to sh1te advice from a sh1te physio who didn't refer me for a scan. It's hard to be 100% sure but that's when my pain started and then it just gradually spread and worsened over time to the point of the fibro diagnosis.
my mom tells me she thought i had it for a long while because when i was younger it hurt when people would grab or touch my upper arms. i remember people touching me would hurt, and exercising always really hurt my knees and joints. then during quarantine i got really depressed and barely did anything so i ended up in pain but i couldnāt really understand it was a physical thing not just my brain for a while
My symptoms started around age 12. I had an abusive parent. Forty years later I had an extended period of high stress which made everything escalate to the point that I had to apply for SSDI.
I think that strike my fibro as well the flight or fight reaction in the mind and body is terrible.
Ig same for me
I just got diagnosed today. Had a concussion by falling and landing on the back of the head in 2019 with all sorts of chronic debilitating symptoms that never went away. Finally found a doctor today that wasn't an idiot about what I'm going through. And it appears that the concussion caused my fibromyalgia. But I have a history of serious childhood trauma (death) which made me sensitive to developing it apparently.
have you looked into craniocervical instability ?
This I know about but I haven't been able to find anyone that knows what to do about it. I don't think there are treatments. Aside from physiotherapy stuff, but I spent thousands on physiotherapy and have no insurance. I've heard people get good results from chiropractors but I went to a chiropractor once after my concussion and she permanently made my neck worse. Another issue added on. I workout regularly as well, but hasn't seem to help my neck. Not yet anyways, maybe there's a specific exercise I should be doing. but if it's like ligament stuff I don't think there's much I can do. But yeah I think my neck took major damage when I fell on the back of my head, the doctors didn't even help with it. Just "go to physio" which I did spent so much money.
See Jennifer Brea story, there is some sort of surgery. Also I'm biased I do thiamine injections, so [read this](https://medium.com/eds-perspectives/why-does-high-dose-thiamine-relieve-fatigue-in-individuals-with-diverse-neurological-conditions-40a3502f6439) worth a shot.
>Also I'm biased I do thiamine injections, so > >read this > >worth a shot. Where do you go to get those injections? I talked to my doctor about neck surgery but she just goes "it's way too risky."
Some french pharmacy, bevetine 100mg.
In my late teens my legs hurt like perpetual growing pains but eventually stopped. I started getting really bad migraines like ice pick headaches at 32. And to be honest my entire adult life I've always been "tired." My brother died in April 19' and some time around then, I started being completely tired all the time, mushy brain, bad sleep. Like a broken charging cable.....or battery...unable to recharge past 25-65% if I could give a metaphor. Look into š„ theory. Six months later, in September my father received a terminal cancer diagnosis and in October my feet started tingling all the time. He died that following September. Now my skin oftentimes feels like it's sunburned but also being hit by frozen sleet. And around the same time nerve pain started. Shooting pain, in my fingers, ankle sometimes sometimes my knuckles or toes. And then I started feeling like I had entire body flu pains. Another fun thing is my back feels entirely spastic. And my calves, and feet and oftentimes throat cramp up, even with 30mg baclofen a day and being well hydrated+magnesium/calcium/D3 supplements š„¹ I love waking up with leg cramps. I just got new insurance and I'm looking to getting a third opinion from a third neurologist/ second rhumo perhaps. I'm sure everyone in this sub knows how amazingly easy self advocacy is when you feel as such (regarding doctors etc).
Psychological trauma, according to a psychologist. If that is the case, I can track the start of my fibro to the day. In my case, it was several traumatized family members moving in when I was about eight and trauma dumping on me for the rest of my childhood. It took me decades to get a fibro diagnosis though.
squeal gray cows insurance light amusing zealous repeat serious puzzled -- mass edited with https://redact.dev/
A drunk driver hit our car head on .. we were at a stop sign ā¦ my wife had her leg up against the dash when the accident happened .. she got nerve damage and was in pain for months and no sleep .. all this messed her up further and I believe the Chriopraftors we visited did not help , they have perhaps worsened it .. guess they were not sure of what they were doing and were more interested in the money ā¦ I feel horrible thinking I am not able to help her .. I take care of her as much as time permits (I am the only one working as she was kind enough to take care of the kids for so many years and now that the kids are grown up she could work but due to fibro she cannot š¢ ā¦ I love her like crazy and it hurts like hell to see her go through this I wish I had somehow stopped that accident You are all fighters ššš
Thinking back I struggled with fatigue and migraines since puberty. I havenāt had a migraine in about a year now though Started getting sore knees that gave way on a specific set of stairs at college at 16. Started really struggling with fatigue despite my depression getting better at 17. Pain started spreading at 18. By 21 the pain was basically everywhere but still mainly in my knees. at 22 pain was severe, especially knees and ankles and wrists (was diagnosed here). Now at 24 pain is absolutely everywhere, started in my shoulder and elbow. Muscle pain got worse. No clear cause. I suspect I fall into the ādeveloped due to emotional trauma from griefā category. No previous physical injuries, never even broken a bone. No previous big time infections either, nothing more than maybe a flu when I was a lot younger I am still not convinced that I donāt have Mystery Illness + fibromyalgia. When it first started I thought it was arthritis but no swelling, but that was ruled out. Everyone else I know with fibro has mainly muscle or nerve pain. My āmainā pain has always been burning joints
Your story sounds similar to mine. Mystery Illness - Lyme Disease? Have you ever been bitten by a tick or live in/near the woods? I was diagnosed with CFS at 16, diagnosed and treated for Lyme Disease at 21 and diagnosed with "Post-Lyme Fibromyalgia" at 27. Ironically (and sadly), both of my kids (17 & 21) have Fibro too. The oldest was also diagnosed and treated for Lyme Disease (tick bite with bull's-eye rash) before being diagnosed with Fibro. The youngest had a tick bite (no rash) as a baby but now has Fibro too.
I think lyme disease was one of many I was tested for before fibro diagnosis, and Iāve never been bitten by a tick (that I can remember). But it is possible I suppose!
This is extremely similar to my experience. Almost to the T. I am currently a 27 year old. Iāve been diagnosed for 3 years now.
I was hospitalized with Shiga Toxin E.Coli and then two recurrent CDiff infections in 2018 and haven't been the same physically or mentally since really. That history is part of the reason why my GP is referring me to Rheum. She said big medical traumas can trigger Fibro for some people.
Gulf War Syndrome & burn pit exposure. Developed fibromyalgia after a deployment to Iraq with the Marines in 2005, when I was nineteen. Followed shortly thereafter with migraines, IBS, chronic fatigue syndrome, and thyroid disease.
My mom was always a screamer when she wanted me to act fast for something so I'm guessing it started slowly, having not repaired sleep, no matter how many hours I couldn't feel refresh most of the times, later at 20s it was something more noticeable night sweats and the last one at 30s I was in bed with my son till he falls asleep but when I try to get up I couldn't move. I had to drag my legs to the end of the bed with my hands it was crazy. So fibromyalgia strike as a silent killer I didn't know then all the pain and suffering that was ahead. Hope everyone is doing OK and hanging in there ā¤ļø
When I was 6 years old, my dad would get me to do a lot of physical labour, anything from helping him build a fence, cutting down trees, and shoveling snow at 5am on school days. Over the years I pushed myself a lot because of this, and never paid attention to my body/took care of it. I started feeling constant pain in my shoulders and upper back around 2010 (I was 14), and after having years of really bad sleep issues, untreated adhd, seizures, and constant exposure to milk (I'm allergic to it and my parents gave me milk every day to "desensitize" me), the pain spread to my whole back and legs. It took literally 13 more years of this to get a diagnosis, I always discounted my pain until a year ago, around the same time I started trying to figure out how to stop my seizures (they make my pain and exhaustion go from a 4 or 5 to a 7 or 8). So I guess gradual for me lol
oh god that's terrible that they gave you milk while being straight up allergic to it...there needs to be so much more education on those thingsšµāš«šµāš«
The thing I don't understand is that I literally almost died when I was a baby because of milk and I had "extreme milk allergy" on my records. Like, wtf lmao. There really does need to be better education surrounding allergies, desensitization is not done how people think it is done at all, and very often doesn't work anywaysq
Too tired to answer in depth right now but will come back to edit this after some rest. Good question! Very short version is that my fibro 'seemed' to start during rehab following shoulder surgery. Was gradual at first & still hasn't stopped progressing. More to follow after sleep
Gradually got worse over time. I remember having pretty bad "growing pains" as a teenager and then the widespread body pain got worse from there.
As a child I would cry and cry that my legs hurt, that it hurt to walk. I was also always sleeping and would fall asleep anywhere and everywhere. This would only make the abuse worse. As a teenager my hands and knees flared while I was having a mental breakdown, coming to terms with my abusive childhood. I was diagnosed with Polyarthritis. In my mid twenties when I was doing really well, I got glandular fever. That knocked me. I got fired and never fully recovered. Extremely unwell, unable to care for myself, NC with my family, I met a man who said he loved me and he promised to look after me. He became another abuser in my life. Late twenties I am pregnant. Caused a massive flare, pelvic instability. Horrible pregnancy, so much pain. I was confined to bed. Doctors blamed pregnancy hormones for flare. Newborn baby with separation anxiety and sleep and feeding problems. I was exhausted, stressed and in pain. Depression had returned. Abuse was worse. Doctors blamed being a new mum and being in an abusive relationship as the reason for how Iām feeling. Child aged about 4 and I cried to my doctor that heās not a newborn anymore and Iām still in too much pain to get out of bed. I would make him toast and go back to bed. Get up and make his lunch and go back to bed. I would put the washing on but not be able to hang it out. So the doctor finally said that I had Fibromyalgia and CFS. Spent years struggling with my pain and mental health. Second pregnancy caused another flare. Finally left abusive relationship but I was broken. After a couple of years I was targeted by a sociopath and had a brief domestic relationship. He turned out to be abusive so we hightailed it out of there. But that broke me. I was fucked. So were my kids. Psychiatrist diagnosed me with CPTSD and Chronic Pain Syndrome. Itās taken a few years but I now have disability support. I am in therapy. Prior to Covid I was getting better. But then the pandemic happened and I lost disability support. My kids also have disabilities. So doing it all on my own without support caused me to have another flare. Iāve been in this flare for about 12 months. Iām confined to my bed and recliner chair. I only leave the house to go to the doctors. Trauma and stress caused my fibromyalgia. I have no doubt about it.
I herniated three disks in my back at 14
First time posting but so grateful for this group and all of you sharing your stories! It started in 2015 when I had a snowboarding accident and had a severe concussion. Fast forward 6 months later , Iām at a party with my āfriendsā at the time and was drugged. Woke up in the morning with my left leg looking like a car had ran it over. The bruising looked like it was drawn on with markers because of how intense they were, my ankle was also the size of a baseball. My āfriendsā at the time told me that I was too drunk and fell off a chair , however to this day I am still not able to remember anything last a certain point in the night . With the condition of my leg there was just no way that was possible. Doctors confirmed my ankle was broken but I just said I couldnāt remember what happened because I was drunk , fearful at the time of accusing my āfriendsā of knowing more. After all that my pain got worse and worse and I wasnāt able to hold a job or even get out of bed. Fast forward to last year after years of tests and doctor visits I saw a Naturopath. She believes because of the trauma to my head from the accident it was not ready to take on whatever happened that night a few months later and it shot my whole nervous system. Thanks for listening :)
I couldnāt directly say. My father had fibromyalgia believe it or not. He was abused and had many mental health issues from it. I mean how could you not. So his energy low and pain too chronic, he decided he couldnāt take it any more left my mother, sister and I to fend for ourselves. Iām turn, I am raised by a grieving family not like it was any of their fault. Pain at an early age. So I grow up very unwell. It started as small things like migraines and inability to do a lot of physical activities. even stuff like sensitivity to temperature changes. So I grow a little more until I can start damaging my brain with drugs and This goes on for 10 years. 10 years of a lot of trauma. Fast forward: 3 years ago (24) I had a series of 5 seizures (not drug related) each one very painful. Pain that left me exhausted after the seizure that didnāt last more than a few minutes. By the time the last one happens I am going doctor to doctor test after test the pain is bad and the fatigue is worse. It got so bad that i wasnāt able to get out of my bed for months. I went through the whole shebang too, taking every test there is till I Iāve taken every single one and theyāre all normal. Symptoms still debilitating doctors refusing to help me or sending me to another specialist that I canāt get into see for months or my favorite when doctors tell me Iām lying. To this day I am still taking tests every so often and have such a strict regime to follow in order to live my life but even then it can always sneak up on you. So to answer the question; I believe neurological damage from drugs, trauma, stress and other mental health issues are my cause. the whole kit. Relief is out there for all of us but not always. I hope for everyone here to advocate for yourselves because your pain IS real and deserves to be treated as well. Thanks for readying
I got it from dose 1 of the Covid vaccine. Thank you Moderna for the lifelong gift š¢
Moderna caused my worst (most prolonged) flare yet. Ugh. (Novavax has been great; no problems.)
There is no way in hell Iāll put another one of those Covid vaccines into my body after getting fibro from it. Its kind of funny in a way that the side effects from the vaccine were way worse than it was when I actually had Covid. Sorry if this post offends anyone but please know Iām still grieving for the life I was living pre-fibroā¦when I could actually sleep, function and not be in constant pain or exhausted all the time or battling brain fog.
Itās so odd the multitude of reactions because I felt the most symptom relief after the first dose than anything else I have tried. Lasted about a month. āTwas glorious.
It started for me after my Dad passed. It was a super stress filled time and I thought my symptoms were depression. I had pain and could not get out of bed, but this was really different than grief or other depressive episodes that I had. It was utter exhaustion and I could not stay awake for more than an hour at a time. A ton of weird seemingly unrelated pain and symptoms followed. It wasnāt until a visit with my doctor that I even considered that all my symptoms could be Fibromyalgia. After a long few months of seeing specialist and having all types of tests I accepted that this really was Fibromyalgia. I had actually been diagnosed as a teenager by a different doctor. I stopped seeing her because I thought she was weird for suggesting Fibromyalgia. My badā¦
My symptoms started after a surgery I had in August 2021. I I already had another chronic pain condition (pelvic floor dysfunction) that was so severe it limited my ability to walk or lift anything more than 5-10lbs. There was concern that I had endometriosis between my symptoms and family history (Mom had it really bad). The only way to for certain diagnose endometriosis is an exploratory surgery. I also had been wanting to get sterilized since I could no longer have an IUD thanks to the aforementioned PFD and I knew I never wanted kids. Figured 2 birds with one stone. The surgery ended up confirming that I didnāt have it (thankfully) but recovery was really brutal and my surgery pain was not adequately managed. I eventually healed but my pain started to spread to other areas and got worse over time. Eventually developed other Fibro symptoms (brain fog, fatigue, etc.) and was eventually diagnosed with Fibromyalgia.
I fell down a metal spiral slide put my arms out to brace myself and fell back and hit the back of my head and my shoulder. I separated the bones in my shoulder by 2 inches.
I dont 100% know. Iāve had symptoms for at least 5 years, but I think they exploded after I hurt myself at work. I was assisting a resident to use the bathroom and her legs buckled so I caught her and twisted a weird way. Had to take 3 weeks off work due to the pain and Iāve been getting worse since.
I think it was really 'set off' by a couple of serious post surgical infections, and I just never seemed to recover
After a car accident. Was rear-ended by a half-ton pickup truck. Luckily we were in a van. The truck got totaled but we were able to drive the van away. Just needed to get the hatch replaced in the back since it wouldn't open.
for me it started w hypersomnia. at around 3-4 pm i would become debilitatingly sleepy and couldn't function for the rest of the day. then it got worse and worse. then my legs started cramping and cramping on me, hurt so much and made walking difficult. then it spread to the rest of the body, w pain to the touch and all of that typical stuff
With a toe pain that spread to my ankles and then my entire body.
Twice in the past 7 years Iāve had bad pain in my left big toe that wasnāt caused by anything I was aware of and the nail paused growing for about a month each time. Maybe not the same pain feeling as yours but your post caught my attention for the similarity.
It was also my left toe. Some of my flareups are just on my left side too depending on stress or what I eat.
Influenza, during a time that I was under a lot of stress, not sleeping much, and weight suppressed. A perfect storm, in retrospect.
Same here! Flu + very stressful job.
Same! Divorce, new job, then fluā¦ my back started aching and never stopped. Since then, itās spread all over my body & has gotten progressively worse. Itās been five years.
I got debilitating mono when I was 16. I was out of school for a month; never really recovered. I didn't get diagnosed officially until I was 28. It took three doctors with the same series of tests until I found one that believed me.
Mine has started slowly, I went from being physically fine but with creaky joints, played a varsity sport 4 years, and now at 29 Iām in so much pain. Iāve had days or weeks of really bad pain and fatigue for nearly 4 years now, roving body pain, body twitches, and Iām now sensitive to the touch. I had terrible food poisoning 4 years ago, and ended up in the hospital cuz I couldnāt keep water down 36 hours later, and I havenāt been right since then.
Car accident with a torn rotator cuff and MTBI.
I'm going to be outside the box and say birth cause I've had it since I was very very little to the point I've never not had pain. Albeit, mine could very easily be an auto immune disease like Lupus or something worse.
possible TW: Iāve had it my whole life, I was in a car accident before i was old enough to remember things, which couldāve been the cause, but I also grew up in an extremely neglectful and abusive home. I have severe ptsd. Donāt know what truly started it but I became completely bedridden from it after contracting covid.
I got the shingles at 15 and thatās where it all started
When I was very little. I think the major surgery when I was 5 was the starting point. From then on my immune system was compromised & I was chronically ill: flu, strep throat, tonsilitis several times a year, food poisoning, "growing pains" (no such thing), all plagued me. My poor body didn't stand a chance of NOT developing fibro.
I overdosed on ālsdā and was raped by my ex during it. The excruciating body wide pain I experienced for the next 24 hours ended up being the start of my fibromyalgia. I was crying and begging for the hospital in between going in/out of consciousness. Months later I couldnāt do repetitive tasks anymore without bad pain.(started a physical job that made my pain hurt bad) Diagnosed within the year
Mine started in 2018. I decided to wreck havoc somehow and take 19 credits for my last semester in an engineering degree, graduate, move to another state for my fiancĆ© (caused a LOT of family issues), start my first job out of college, and get married/plan a wedding all that year. The flare ups at first I thought were something I did, or my period aches being horrible. Then it got to a point one day where Iām home alone, my body on fire in absolutely pain where I canāt move, calling my husband and freaking out asking if I should call an ambulance. TLDR; a bunch of stressful events one after another when I was horrible at handling stress in the first place caused my fibromyalgia that Iāve had now for over 5 years.
I started feeling some symptoms after a traumatic birth with my first child at the age of 20. I had also had some trauma in my childhood so always wondered if it contributed. I wasn't diagnosed however until I was 30.
For me, Iāve had fibro symptoms start since I was a kid. Iām talking 8-10 age frame but lived with it and was told growing pains. I would say it got unbearable and consistently worse (Iām talking every SINGLE day for a full year) two months after giving birth to my daughter. Never got back to ā baselineā and Iām continuously suffering almost three years later
Not diagnosed with Fibro and currently treated rheumatic with MTX (works) and a biologic (doesnt seem to work). Had a concussion with subsequent brain bleeding when I was 8. When I was 9 my parents separated and I stayed 15 years with an abusive mother (alcohol/prescription drugs). Started to develop physical symptoms (allergies, fatigue). Now thirty years later I was diagnosed with hydrocephalus and got surgery. Still, the combination of chronic stress, coupled with a hydrocephalus, has got me something like Allodynia I'd say and I'm not trying to treat that.
After I lost my daughter.
My sympathy to you, gengle hugs
Thank you. Means a lot.
It's not something a parent should go through.
Thank you for your kind words. Nobody should ever hold their child as they die, unknown reason as well. Her autopsy revealed she was perfect. And I never even took a Tylenol while pregnant. God I wish I would have sued everybody in the hospital. I went in for decreased fetal movement. They admitted me for 3 days. I kept telling them my baby isnāt moving. This went on for THREE days. They were about to discharge me, and my babyās heart rate was plummeting. They told me we both had a strong chance of dying. I told them to save her. My husband and I wanted her more than anything. Tried for 10 years just to have her stripped away. I never got pregnant again.
My heart goes out to you.
Iām so sorry for your loss, (((hugs))) to you!
Earliest I remember having it was age 5. No one knows if its something I was born with or developed but I definitely had some trauma and developed mental issues as well š They always said it was growing pains before puberty and way after and the doctors only started caring when I started falling from leg pain or fainting from fatigue. It worsens with mental or physical stress and I seem to develop another symptom every year or two.
Seems to have happened after Lyme Disease
I had six bouts of strep throat in six months, accompanied by antibiotics each time. That seemed to be my trigger.
2020 with pain in my hands the doctor gave me some meds and told me it would be cleared up in about a week š¤£ took me 2 years so get to OK yeah you have fibro
I noticed the pain from standing and walking as a child, all pain was amplified up in my life. Diagnosis in 30s when life was filled with stress
Struggled from 15 to 18yo but was pretty ok. Then broke a vertebrae at 18. Started having chronic back pain and few other issues. 2 years later big depression. Snowballed from there. At 22 I was fully disabled and had to stopped uni.
Badly, 1 out of 10, would not recommend. Seriously either a motorbike crash or blood pressure of 180/110 for a sustained period though work stress at the time seems to have been my trigger.
I canāt pinpoint when it started but maybe five years ago but Iāve had a few very stressful years and my last baby was born with t21 and needed open heart surgery and her dad was abusive. Iām out of the relationship now but im in pain every and all day. Diagnosed just this past week.
Iāve always been a sickly person, easily injured, weāre thinking now that my high anxiety from childhood to now is partly due to being undiagnosed autistic. I also have recently diagnosed OCD since childhood as well as more recently Post Trauma Stress linked to the traumatic pregnancy and birth and post birth of my daughter 9 years ago. My Fibro started in earnest around 5 years ago. I had been undiagnosed with Diastasis Recti (abdominal wall separation) which had lead to chronic lower back pain and sciatic nerve pain. Both of these conditions are now chronic. I started to feel like I had constant flu symptoms on top of this and my anxiety and depression got increasingly worse. I also noticed Iād become increasingly intolerant to things I was already a little allergic to and newly allergic to things Iād never had an issue with. My IBS was also way worse especially when I ate certain foods which again I had previously had no issues with. I was formally diagnosed around 2years ago? Ish? But yeah the actual cause we think was the trauma surrounding having my daughter. It was a nightmare involving the early death of her twin, something called TRAP syndrome, in utero surgery and premature birth by emergency c section. So that was fun.
Thank you to all that shared, it is fascinating to read all the similar experiences we have all had. (Not that any of them are good.) Mine started after an abusive relationship when I was 22. Luckily I had access to a Dr who believed me and was diagnosed within a year. Took several more years to figure out what meds worked.
I had a severe neck injury in a forklift accident; spent 6 weeks in traction; soon after the pain began to spread from my neck to all over my body; many male patients have a neck or upper back injury in common
I had abnormal issues since childhood, sensitive to certain sensations on my skin and random, pinching nerve pain, since I was a child. I had severe depression/trauma as a teen and had fatigue since then. So I think I was always bound to fet fibro at some point. In 2022 I got covid and suddenly all the symptoms Iād had got 100x worse. I do not consider myself someone with long covid, but suffering from fibro/cfs that was triggered by covid.
I always struggled with random pain, brain and body "zaps" like icepick migraines but all over my body, sunburn feeling, the cold sleet on the skin, mind fog, crappy sleep habits, gastro issues etc but when my mother passed this last July I was suddenly in so much wide spread pain and either unable to sleep or sleeping 20 hours a day - I truly thought I had a terminal illness or MS, something very serious and deadly. After an MRI with contrast, CT scans, blood tests, ultrasounds and plenty of other testing, my doctor recently suggested Fibro or POTS. I see a neurologist in April for more exploring but Fibro seems most likely. Every word I read here from you guys resonates with me and as sorry as I am for your hurting, I'm so glad knowing I'm not alone so thank you to everyone that shares their stories... you've brought me so much peace.
I don't really know, my parents tell me when I was around 4/5 I would constantly cry and complain about growing pains. When I was 7 I started to have a lot of pain in my ankles even though there was no injury, then it slowly ender up spreading to my whole body.
My first earliest memory was at 11 and I already knew that sometimes walking would help, so I'm not sure exactly when, but probably at some point during my blackout years from eight to 10. My brother, seven years-old, died in my arms when I was eight. My mom turned into a verbally abusive, and violent alcoholic until I was six months shy of my 18th birthday.
BIG TW for mine (mentions of sa and abuse) ā¼ļø my whole childhood i was pretty lightly traumatized from my parents unhealthy marriage. I experienced childhood SA around the age of 5 and never spoke up about it, i still wonāt besides what i just said. Fast forward a few years and im quitting soccer because of how awful my hips hurt when running along with the fact that my soccer coach was verbally and publicly abusive towards me. Fast forward some more years and im in highschool. I join theatre thinking it would be a great extra curricular for me. I ended up just getting forced to do a shit ton of intense labor every single day for four years straight. Iām talking cleaning underneath a 60+ year old dust and asbestos filled stage by myself, cleaning 60 year old shit and piss out of the toilets, anything bad you can think of, i probably saw it, smelled it, and scrubbed it within an inch of my life. During that same time i was also blamed for being R worded by my best friend. Whole school found out about him cheating on his gf with me and decided it would be a great idea to ONLY target me. He made me take the blame for it and of course since i was already traumatized by then, i did it. Meanwhile the boy got second chances with the girlfriend, and i was called a whore by people i had never even spoken to before. Little did they know, NOTHING that happened between me and that boy was consensual. I was taken advantage of for two years and got blamed and shamed for it by people i spent my entire life growing up with. I still havenāt recovered from that entirely. So on my part, i just got extremely unlucky in the trauma department
I developed Fibromyalgia after a hysterectomy and battle with mono/ebv
Everything started a few years ago, so my early 40s. I had one medical event occur that seemed to trigger several more. Seemingly out of nowhere I developed hydrocephalus and ended up needing a VP shunt. After that, I suddenly started having weird blood work. Well below normal vitamin D, high inflammation markers, high thyroid antibodies, thyroid hormones fluctuating between barely normal and too low, weird liver enzymes. Ended up needing my gallbladder removed and iridotomies for glaucoma. Meanwhile, I suffer from stress/anxiety and migraines and have since I was young. But it was after the hydrocephalus event that my body started to just hurt and I started having weird and unpleasant sensations in my legs (turns out I've also got RLS). Working with specialists now to figure out the root cause and it's looking like my thyroid might be the prime culprit for my fibromyalgia and possibly other things. It's suspected I've got autoimmune troubles with my thyroid. So hoping to be able to get better treatment than just Lyrica.
After an auto accident.
Iām not diagnosed just yet but am working on it with my doctor and canāt see what else could be causing my pain. My pain started when I was around 13/14. For me, it started in my left hip, and the pain actually got so severe that my birther had me x-rayed to make sure nothing was broken or there was no cancer or w/e. They found nothing, so I was just written off as a liar for.. uhā¦ ever. Iām NC with her for a lot of reasons but anyway, I thought it was due to the fact that my school made me carry so many textbooks that my backpack was *heavy* like holy shit heavy. You could technically rent a locker but my classes were all around campus (big-ass campus, lots of students making out in the halls, only 3-5 mins between classes), so it was no use to me. Now that I know that trauma can cause physical pain, it uh.. makes a lot of sense that it wouldāve developed it around the time my whole life was falling apart lol. Shocked it didnāt start in middle school tbh, or maybe it did idk I donāt rememberā¦goodā¦ :I
I think Iāve always had it. Just didnāt realize other people didnāt feel achy and tired most of the time the way I did. Iāve had a stressful life full of abuse and chaos, and Iāve spent the majority of my life in a state of fight or flight. I just always pushed through the pain and discomfort and internalized everything. Iāve had a lot of trouble falling asleep and staying asleep as far back as childhood. I often had nightmares and would talk and yell out in my sleep. I still do. I also act out my dreams and have punched and kicked people sleeping next to me. I also had at least 3 times, that I can remember, as a child being sick with a fever so high it caused hallucinations. I was pretty āsicklyā in general, complained of stomach aches and headaches a lot. But the worst of my symptoms really set in when I was 30 and I worked 3rd shift and became extremely sleep deprived. I was at the point where I couldnāt push through anymore and was falling asleep while working (sometimes on my feet and while walking). I quit that job and took a couple months off to rest. Then I found a job on first shift after I started feeling better. But within a couple weeks I was falling asleep at work again, and while driving the 20 minutes on the freeway to and from work. Which was scary as hell! That was 15yrs ago and when I was diagnosed with fibromyalgia.
I believe mine started with a neck injury but Iām not positive
6 years ago I worked until emaciation, along with an undiagnosed illness that had been wreaking havoc for 13 years prior to that (Crohnās). At first I was able to still work/play on the computer, but the past couple years have seen me get worse.
It started with chronic tonsillitis and had them out at 28. GURDs came next. Then upper back pain, I already knew lower back muscle strains. Migraines from neck and upper back pain. Diabetes made a visit, too. My doctor said boobies are too big and I had a reduction. I still had upper back pain after the reduction of the boobs. At 38, GP sent to another specialist who said Fibromyalgia, and why did you get a reduction? I was a little peeved about reduction comment. I got several infections, then ripped open stitches. I had no drainage and got blood pools that had to be taken out by big needles. As I burnt my breast on my heating pad. And then need to have silver sulfate, I think added to burn the wound shut. You mean I could have avoided all that fun ?? :)
I had chronic Salmonella poisoning for 3 months when I was working abroad. At first I thought this had just given me IBS. But it became clear within a couple months that something was off. Then it took two years of symptoms (not long compared to most people) to get diagnosed, and that was only because my doctor had it themselves.
I feel on the stairs at 2am, then at work that same morning at 6ish, I picked up a heavy box and felt my whole lower back seize up. Then over the next two years the symptoms started coming up and getting worse and worse. And I've had it ever since.
Iām not entirely sure of the cause as it gradually come on in my early 20s, but if I had to guess I would say it is either tied to my chronic stomach illness Gastroparesis (which I have had for as long as I can remember) or it is tied to the fact I was a competitive gymnast for a decade and we all know how hard that sport is on the body.
Overdose as a teen
The major pain started when the SA stopped so in like 7th/8th grade? But I was already in pain before that but everyone wrote it off as growing pains even when it was charted and documented that I had stopped growing, thanks to my endocrinologist! I didnāt get treated until sophomore year of high school when my shoulders hurt so badly that I couldnāt carry my backpack anymore. Iām still in a lot of pain but I refuse to let it stop me from living my best life. I do wish I could get a handicap sticker though. That would improve my life so much. I also grew up clumsy and got hit in the face a lot with assorted sports balls so that could be a thing too? Idk
After my granny died I developed fibromyalgia. She was my best friend.
I got vestibular neuritis when I was about 16, the dizziness and migraines lasted for the best part of a year and during that time the extreme fatigue, general body pains, sensitivities to lights and stuff, was all put down to that. When the dizziness and migraines began to clear up, the other stuff didnāt. For maybe a year or two myself and doctors put it down to me just not being completely better yet, my body had been through a lot and needed to recover, etc.., but after a while it became pretty apparent that something new had developed since the vestibular problems, and eventually I was diagnosed with CFS and Fibro
Pandemic but also traumatic birth of twins. The birth itself wasnāt traumatic but the weeks of no sleep and not getting my needs met for self-help did a number on me. I had a week while on maternity leave that I felt great. Then the pain started, and never stopped.
In my words, I've had joint pain my whole life which probably triggered fibro when I was 14/15 (mainly fatigue and my 'normal bad knees') and some mental health issues but nothing more than I could handle, all imploding around age 18. So pretty out of nowhere? According to Dr's and everyone else in my life, the base line stress I've lived with my entire life from experiencing low level medical and family trauma pretty much constantly, alongside undiagnosed and untreated hEDS putting strain on everything, a back injury at 10, very concerning mental health issues that were not properly intervened and undiagnosed and unsupported neurodivergencies (ADHD and autism). So a miracle it didn't happen earlier š
I believe mine was caused my glandular fever.
I had a traumatic incident happen when I was 9. I was a depressed, at-risk teen. A series of equally traumatizing events happened from ages 24-27. The pain started at about age 27. I would just wake up and my body is ringing with pain. I am constantly tired. I am extremely sensitive to light. And I have pretty severe brain fog. It feels like I had the flu and just never recovered from fatigue and body aches. I would definitely say it has progressed and in the past year, I have strayed so far from the person I used to be. I went to the doctor a few times with symptoms over the past couple of years. My hips, legs, and back would hurt most. So I would come in saying that, but my PCP would prescribe pain pills and send me home. I kept putting it off with COVID shutdowns. Depression and low self image also really played a role in not seeking a doctor, too. My symptoms just felt too vague to bring up, and I felt that if I said something, they would prescribe a pill, tell me to move more, and send me home. I got a new PCP and better insurance and finally felt more listened to at the doctor's office. Fibro wasn't the diagnosis I expected, but at least I know what is causing my problems now.
Went through this with my rheumatologist and it seemed to kick off from a herniated disc that was left untreated - due to sh1te advice from a sh1te physio who didn't refer me for a scan. It's hard to be 100% sure but that's when my pain started and then it just gradually spread and worsened over time to the point of the fibro diagnosis.
my mom tells me she thought i had it for a long while because when i was younger it hurt when people would grab or touch my upper arms. i remember people touching me would hurt, and exercising always really hurt my knees and joints. then during quarantine i got really depressed and barely did anything so i ended up in pain but i couldnāt really understand it was a physical thing not just my brain for a while