Birth. My parents said I’d often scream until I passed out right there in their arms. It was soon found my GI was so badly ulcerated there was tissue in my stool.
My earliest memories include being trapped in my bed at night, crying into pillows, because my bones hurt so bad I couldn’t walk to the bathroom and was afraid I’d wet myself.
EDS and Mast Cell Activation Syndrome are probably the main culprits - there’s a lot of comorbidities with them.
Another hEDS/POTS (with some MCAS like tendencies) here.
There were some signs when I was a kid. As a teenager, I was an athlete. Was super injury prone and eventually those injuries prevented me from competing in college. Still lived normally otherwise. Then around age 26 I had the big fall out in terms of symptoms and I’ve been significantly disabled (unable to work, participate in my previous leisure activities, etc) since. Typing this from my bed at 2 pm on a Monday.
I’ve had periods of pain control, including today, but also many many years of nothing. This year was the first in the last 8-9 that I was able to get a GP (extreme shortage where I live) who is compassionate and incredibly kind, and he immediately restarted my pain control. I’d had a plan for suicide and the pills ready for about two years prior, so he’s literally saved my life
I began hurting when I was in my teens. I'm so sorry you're suffering!! I have been suffering a lot recently as well. It has made me want to give up but I can't for my grands. I love them so much! It would crush them. Only reason I haven't done anything about it. I hope you start to feel better soon! 🫂 ❤️
I had similar issues, I was told that all I did was scream for nearly the first year of my life, like deafening screams that made their ears ring. I was told that I was colicky, but that was likely just an assumption my family made because they avoid doctors at all costs.
I'm so sorry you've had to go through that my friend :((( wishing you well and many low-pain days!
realised the pain wasn’t normal aged 11, by 15 i had to stop playing tennis (previously played at least 3 times a week) as my shoulders couldn’t take it anymore. by 15/ 16 my attendance was awful and it was frequently near unbearable to walk. now 19 and have found things that work to help, but still have significant pain, subluxations and unstable joints. i’ve now learnt to pop my hips, knees and shoulders which was honestly life changing. even did it while writing this lol
This sounds just like me, I went to my gp this year saying i want an mrj ive had pain since i was 14 for them to say i have nerve pain because im tall! Mri was rejected. Saw another gp who said i have mild scolisis and diagnosed with hypermobility elhers danlos , mri results said i have protruding discs scmorls nodes (what?!!) Bulging disc touching nerves and degenerative changes in my back, all my gp sent was a text to say "its likely to cause some pain, there isn't a lot we can do" ive just turned 27 with no idea where to start as my gp is clearly useless
Wow! My experience is more and more GPs/PCPS/psychiatrists are useless regarding chronic pain and anxiety. There has been a slow and sure movement away from opioids and benzos over the past 25 years. The use of prescription medications that once gave us a chance at a reasonably comfortable life are utilized less and less.
I would suggest looking for another GP. Typically the good ones are old school and hard to find. Meds are not a cure all, but sure can help in a lot of cases.
I wish you all the best and glad you are here. My personal experience is prayer and legwork are very important.
Hi,
Could you explain how to pop your hip back in place please? I've realised, only over the last year, that I'm suffering subluxation of my hips. Mostly they pop out and back in but sometimes the joint stays out for weeks and I can barely walk. I've insisted on an MRI which shows both labrum are torn. The right labrum has a gap, where the femur has pushed out for the last 14 years. Even with the evidence I'm just being sneered at by the hip surgeon, who says the only way to dislocate your hip is in a car crash.
i’m not sure what the exact issue is with my hips as my dr has also said it’s unlikely to be a true subluxation and perhaps labral instability or general instability (honestly, i have no idea).
the way i find short term relief (altho not recommended but pain is debilitating, just try to not overuse it) is by doing a kinda backwards lotus position where my foot is on the outside on my hip and leaning at a diagonal angle out/ forward. i get a loud asf cthunk sound and the pain is gone for a few hours to a few days.
don’t push too hard, this may not work for you (obvi) and also sometimes it just isn’t ready to pop!
i hope things work out for you soon and you’re able to find some semblance of relief!! :))
18 I woke up paralyzed from the waste down from cauda equina syndrome. I had emergency surgery which saved my ability to walk but screwed my bladder and gi system forever and the pain has been ruining my life since
Birth - hospitalized several times as an infant -cried and cried , every time someone touch me I cried more . Ran every test ( this was in the early 70’s) couldn’t find anything wrong . Eventually I snapped out of it , would have these massive mystery illnesses every few months to years . Fatigue, gastrointestinal issues, severe pain , headache , fog, malaise, no appetite, inflammation… and I’m 54 . I’m now 3 years in a non stop flare up - it’s pure insanity
I'm sorry you are suffering like that. I was diagnosed with chronic fatigue because I just cannot get up and walk more than 20 meters,(on a really good day), spend 80% of my days in bed, always thirsty, feels like a hard days work. Thing is I haven't done anything. I think it's taking everything I have dealing with the pain, GI issues, brain fog, and no appetite. Add severe chronic back/leg pain and anxiety on top of everything and get WTF.
I'm really saying I can identify with you in so many ways. I praise the Good Lord for a couple of fantastic doctors. I know it has to be insane to live like all of us do.
The pain and suffering can be constant misery. Someone recently messaged me saying "OUR KINDNESS TOWARDS EACH OTHER HERE MAKES THINGS A BIT MORE BEARABLE."
I'm grateful you are here, praying for you, hoping you have inner peace, and appreciate your heartfelt share.
I'm so sorry. I truly feel your pain. I'm 68 and my pain is now constant and pretty severe. I feel like my days are numbered and I tell my PCP that I'm dying a slow, painful death. Sending you hugs.
I was likely a ticking time bomb no matter what I did. I’m very thankful that I got a normal childhood & have memories of what it used to be like to move my body freely.
39 after a tractor trailor turned in front of me and I hit it going about 55. I broke 14 bones including C1 and C2 in my neck. I'm 63 now and I wish I had just died that day. I've had 29 surgeries which include 5 joint replacements in the last 11 years. I now have numerous health issues related to all this in addition to the chronic pain.
Big computerized machine was supposed to take my leg from 0 to 45 as I was recovering from knee surgery and had been in a cast for 6 weeks. It accidentally took me from 45 to 90 and I was fully strapped in the seat so I couldn't give any. Student PT grabbed my leg as fast as he could but did not let his supervisor know. I kept complaining over the years that something was wrong but got gaslight, your fat, you've had surgery, etc.
Finally saw a good orthopedic surgeon in my late 20s who recognized I needed surgery but I needed a top level surgeon. Travelled 800 miles to top doc who was totaled surprised mid surgery to find the tear of course. He estimated it happened 6-8 weeks after my earlier surgery.
I had other medical stuff going on too like urinary reflux that caused one of my kidneys to fail. CFS when I 19. TMJ surgery also when I was 16. Chronic migraines. Hypermobility, etc
Left school. Was only physically able to finish highschool at 20.
Got endometriosis at 21.
Figured it out and got into law school at 24.
Realised the thing from 14 was misdiagnosed. It's lupus.
Now I'm 25.
68, I’m 71 now. I guess we are lucky, hard to feel that way though, right friend? Hope you have a decent day and hope you have someone with you to talk to.
Yes, it’s hard. I’m now 76 and other health issues rear their heads as well as the loss of family members and friends. But we must go on as best we can. Wish you also a good day ❤️
15/16 with fibromyalgia and occasional severe periods of back pain. Got my fibro under control over two years ago, but now I have had chronic back & nerve pain for over a year :_D
23, after a car accident. Damaged L4,L5 and C5,C6,C7. And of course, I worked hard to make a living anyway. I was pushing through until I couldn't take it anymore. Now, fibromyaglia, ruptured discs, osteoarthritis, reticuopathy.... been on everything from fentanyl suckers, patches, oxycontin. Of course, until the big " punish the chronic pain cust for drug addicts came along. I've had shots, ablation, and surgery and currently can not get an increase in meds after being on the same amount for 7 years. I'm so disappointed. Currently 10mg. Oxycodone 3Xs day. 67yr old female raising 14 yr old beautiful granddaughter.
I was 3 weeks old when I started screaming non stop, at 18 months I moved my parents hands from rubbing my stomach(they thought it was gas) so my legs. Never slept well until I was 22 and got my first round of oxicodone
I have hypermobile EDS and worked at an Amazon warehouse for 10 months (way before knowing I was hypermobile) and it massively screwed my body. I still have yet to recover. I’ve been in three rounds of PT. I’m 21 now and in constant pain.
Started at 26 first herniated disc in my spine… then at 32 tried surgery and the only reason I’m still on this earth is cus my kids. It increased my pain 10 fold. I’m 34 now and not excited for my 40s or further
27 so i"m luckier than most as i had good fun, expetienced college life etc. I stopped working in my mid 30's. It has seriously impacted my parenting abilities as I've become progressively worse over the last 20 years. Several surgeries and I'm still deteriorating. Im pretty much housebound.
This sucks.
Wow surprised these are all so early. 33 for me. Failed RFA made all my back problems a lot worse. Always had neck problems, have had back problems for 6 years… but it didn’t get really bad until now.
in kindergarten when I was four on the first day of PE class when I realized they were gonna force me to do these torturous physical movements every single day for the rest of my education. And at four years old, when you contemplate 12 years of education with physical torture every day it’s horrifying.
I had emergency surgery and was left permanently disabled at 12yo, racking $96,000 in medical debt in one year. That debt was paid in cash, by me. Not an insurance agency, not a parent or a relative. By me.
I’m in pain when I’m sitting. I’m in pain when I’m standing. I’m in pain when I’m laying in bed, and over twenty years later still get jolted awake by pain.
Not for nothing, I really needed that money more than the fucking state.
I started having back problems in high school. My doctor did an MRI and found a few disc issues. At age 40 I had a terrible vehicle accident leaving me partially paralyzed and in terrible pain. Surgery was not an option. More CTs, MRIs, PT and hard core pain meds. In 3 months the paralysis was mostly gone. I'll be 64 in a couple of weeks. My bad luck landed me in 2 more bad vehicle accidents in the past 2 years. I have to say age 40 started my real downhill slide.
Halfway into the year, age 20… it’s CRAZY to think it’s been 17 years. I’m glad I didn’t know then, I probably wouldn’t have made it this far if I knew what I’d have to go through for the next 2 decades. Cheers to all the chronic pain ppl making the best of their situations! 🥂 👏 ♥️
10 is when it started to impact my life because that’s when i got my period. endometriosis is even more exhausting for a child who’s still expected to do everything like normal. i’d often sleep on the floor in a couple of my classes, on or off my period. it just hurt all the time
as i grew up, more and more became wrong. my knees, my lungs, my heart, my joints. i have chondromalacia in my knees, severe asthma partially caused by a congenital heart defect, and diagnosed rheumatoid arthritis. all of it diagnosed in the last 5 years, and i’m only 25
As young as I can remember. I’ve had back pain and “growing pains” since as early as I can remember, and my parents said it’s been as long as they can remember too.
It started getting worse and effecting my daily life around age 15. By 16 I was using forearm crutches most of the time. 17, using a wheelchair part-time. And by 18 I was in a wheelchair full-time.
Now at 20, I’m mostly bed bound
10 was when my gallstone pain started it took them 7 years before they stopped telling me it was period pain or childhood ibs and had me go for an ultrasound and then I had a 2 year wait for surgery, so 19.
A few weeks after that surgery I contracted shingles, then gradually over that year I started to get pain in my joints all the time, headaches, stomach and bowel issues. They diagnosed it as ME but the pain is a bigger issue than the fatigue. I can't be bothered to argue with them though, either way they say it isn't treatable.
I actually muddled on for a long time, being young and feeling like I had to, so for ten years that I first had the diagnosis I was working full time in community care. Well, I injured my back twice requiring time off and diazepam and that's never been fully better since. So there's an extra bit of pain.
Recently the whole condition seems to be getting worse. I gave up working 4 years ago and tried to use the previously expended energy to be a good wife to my husband and travel with him and potentially I've run myself down by over exerting. I'm a bit scared I may be going from mild to moderate :(
Car accident. T6 to T10 and L5/S1 discs disintegrated due to the impact. Alongside this, I now have spinal impingement and arthritis in the spinal facets.
14-15- PCOS symptoms started and I was properly diagnosed at 20 after years of being told my symptoms were all in my head.
15-16- developed a stress fracture in my lower vertebrae from cheerleading, gymnastics, and springboard diving. Went from All American Athlete to being in chronic pain every day.
22
I had AAD surgery when I was 11 and things significantly improved for me but now it looks like I'm worse off with doctors not knowing what the problem is and how to treat it.. It's been 5 years, I'm 27 now.
Luckily not until age 64. I don’t think I could have made it this far (age 66) if it had started when I was younger. My hats off to those who have. I feel for you. Every day is absolute hell.
14 for the chronic pelvic pain ended up with hysterectomy at 38.16 had shingles on my back nerve pain ever since 18 pregnant mild shingles pain down my arm had operations on elbow and shoulder throughout my life .20 my daughter was born facing up cracked coccyx and since then crippling muscle spasms plus facet joint pain.Have loads of other stuff going on am 52 now but still here.
Several of my diagnoses are genetic so I’ve always been in pain to some extent. But my health took a nosedive at age 25. Severe endometriosis and adenomyosis controlled my life. Then just as things were getting better, covid hit and I got sick almost immediately. My body has never been the same.
The last decade has been extremely difficult. I’ve survived the darkest and most painful days of my life so far.
My pain is caused by stage 4 endometriosis, hEDS, and ankylosing spondylitis. Plus adenomyosis before my hysterectomy. It’s a terrible combination!
16 years old. I was diagnosed with tendinitis in my right foot. Apparently, I “have been overcompensating with my left knee and limping from my tendinitis, wearing away all the cartilage in my left knee.”
At 19, in a tubing incident, I tore all the tendons in both my shoulders, got tendinitis in my left one super bad. Had that gnawing pain every work shift. I was a manager at Famous Footwear and lifting the shoe boxes over my head KILLED my shoulder.
At 26 I was diagnosed with hyper mobile Ehler’s Danlos Syndrome. Every single joint in my body dislocates laterally and/or overextends. I also have a good amount of dysautonomia and heart/tendon/ligament issues.
It took 5 years of scoliosis X-rays at the Mayo Clinic until I was told my curve (31 degree curve on the top, 36 degrees for my bottom curve with a twist to the left moving my whole rib cage.) I was told at 26 that my mri and ct showed osteoarthritis in every joint of spine. Despite all of that, I was cleared to finally start Yoga (any kind of exercises had been put on hold).
31-32. Several prolapses in my back, surgery probably won't make it better, so the only solution is painkillers but even with fresh mr pictures showing my fucked up back they still shame me for needing strong painkillers..
I was 22, about to turn 23. I’m 47 now, and it completely derailed my life. Had to quit school, had to go to part time work, then no work, took 6 years to get social security disability. All of my dreams and goals, just gone. I was so close to finishing my degree, and hopefully having the career of my dreams. I am still so angry and so resentful. I’ve accepted it a long time ago, but I won’t ever be okay with it. In the last year, a new type of severe pain, along with literally every other health condition I have, even the ones what had been essentially dormant, have further wrecked my life, and my doctors are at a loss. For a month now, I have been in the worst multi symptom flare I’ve ever experienced. I’ve never felt this bad for this long. On the 25th, I even broke down and went to the ER, not for pain, but because I legit thought I was experiencing imminent organ failure. Again, no answers, but the ER doc did speculate about a possible cause, which is more than anyone else has done in the last year, essentially.
I had some beginning issues that flew under the radar and came across as “laziness” in high school. I could just deal. The real onset happened around ~28ish, but the severity has majorly increased in the last two years. I’m 33 now.
22 years old for me. That's 50 years ago and was the first sign of the spine problems that would follow me the rest of my life. I've been on prescription pain meds for the last 30 years.
About 8 months after my stroke, the tingle started in my affected side arm and through to my fingers. It's only gotten worse since. I'm now in my 5th year post stroke. CPSP excruciating when it's inflamed, annoying when 'calm'. I used to look forward to being an old lady, living in the woods, smoking pot I grew, and reading all she can. Now, well I just go day to day.
At about 21 or 22 when i was still in the marines my platoon was doing martial arts training before a range i got flipped up in the air and heard a loud pop go off in my shoulder then my arm went numb shortly after and i couldnt bear no weight and for a solid 2 weeks my hand swelled up like a ballon turned dark purple and they wouldnt let me get it checked and was forced to do pull ups all fudged up and carry full loads on it about 120 lbs worth of xtra gear but after i had 3 months or so left on my contract they finally let me get seen after so they sent me some pt guy and after a few shots and rounds of pt with him they gave me an mri i went back to my battalions aid station let em know and as i was sittin there i heard battalion aid officer and his assistant yell out" what the fuck " which made laugh for whatever reason amd come to find he said i absolutely destroyed everything in my shoulder and rotator cuff and gave me a choice i could either stay in a few extra months for a surg or get out and have it done by the va needless to say i choose va and they guy gave me a permanent light duty sheet and a prescription for vicodin with refills and since then had other problems to especially with my spine and my shoulder injury started in 06/07 isj
I was perfectly healthy for what could be considered healthy for an eight year old with TOF and asthma could be. One day i started limping around while on the court and another my knee was the size of a balloon. I was put on methotrexate for a few years then switched to humara and embrl shots. Those were painful, knocked my immune system clean to where I had to stay home for two months on house leave.
I'm 22 years old now. And now, we have no fucking idea whats going on with me.
25 is when I started to notice some stuff.
26 I had 11 colonoscopies from 26-29 yrs.
29 it started me getting my ass to the doctors because I couldn't handle it on my own.
30 I bled every day. Had the absolute worst cramps.
34 had emergency hysterectomy
34 had lumps removed in breasts
35 had 2 back surgeries
36 had 2 back surgeries
37 had both hips replaced
37 diagnosed with Rhematoid Arthritis and Complex Mixed Connective Tissue Disorder
38 had spinal fusion, 14 levels
39 diagnosed with Psoriatic Arthritis
I was 11 and then before my 20s things got worse due to a full hysterectomy and then cyctectomy (full bladder,urethra,lymph nodes removed. Then it was one diagnose after another I have been to most all of the major hospitals on the east coast over the years. I am currently back to being bed bound.Been on hospice 3 times and I’m still here so I’m back on palliative and home health.It just gets worse some days I wonder how and why I am still here but I keep praying for some better answers.
It has always caused problems for me, I just didn't know what it was until it went quiet from the age 17 til I was 23 when I started getting migraines daily in March 2024. Pretty much every day since March 2024 I have dealt with migraines. Since then I've dealt with chronic fatigue, chronic pain, & just kinda grieving when I was 17 when I didn't have pretty much any health problems other than getting colds.
I didn't realize until I was diagnosed & started learning about migraines that the "panic attacks" I was having daily in middle school after lunch weren't that, they were migraines. I think the reason they disappeared for years was because I stopped eating the thing that triggered the worst of them, gluten.
I hit 60 and everything went tits up. My back (surgery on L5S1) right side. Now the left side has herniated. I still have chronic low back pain and neuropathic pain in my foot and calf because the sciatic nerve was compressed for so long. I rattle with painkillers. Gabapentin (shortly to be switched to pregabalin), co-comomol ad lib and tramadol too just in case, sometimes it seizes up and I then need diazepam to help it settle.
Most recently I’ve been suffering from rotator cuff pain because I’ve been swimming too much (I swim to help me forget the back pain).
I grew up "poorly" from neglect and abuse so I was already having a lot of immune issues, in the 90's they counted it Childhood Toxic Stress Syndrome
So when I was 17 and I broke my skull it was a problem because of my allergies and my sinuses getting a double whammy, then in the mid 90's and the early 2000's I got the two spinal injuries from DV and then SA
I have hEDS and already had over 15 daily dislocations/subluxations at that point and after I wasn’t taken seriously when my hip and shoulder were dislocated I had to walk home over a mile on a dislocated hip.
At home my parents helped put that hip back in place, but that shoulder just wouldn’t go back. It took days before I could see a doctor willing to put it back.
And that basically started the chronic always present nerve pain.
I found a lump at 30 and within 3 weeks I could not walk. They saved my leg but the tumor and all the surgeries caused permanent damage. That was over a decade ago. I’m alive, and life has gotten better but the pain is hard. Tonight I was at my parents and just so exhausted, I only work like 4 hours a day and my pain meds help me manage. But I feel like I am twice my age.
Every ten years starting with a bike accident around 55 years old. Once hospitalized for a week in 2010. Ok until 2025 when I burst a disc again pushing pots in a greenhouse where I worked. You get better. You have to take extreme care of your body. At 74, I teach exercise classes for seniors. I’ve learned to use my core and teach others. Feel better 💐
Age 24 after childbirth. I have hEDS & although I’d always struggled with pain, giving birth broke my body to the point it went more into the “unmanageable without walking aids & strong pain meds” realm rather than just the mild annoyance it was before
Do you mean by backwards lotus that you're lying on your face and crossing your legs behind your back?
I once put my femur back by putting my knee on a high stool and putting all my weight on it and wiggling. I was at an open air concert and walked out normally, after weeks of severe pain. I've never managed this again and, of course, neither my hip or spine surgeon believe me.
What is it with the medical profession? I guess with the NHS sneering is free. I think the next time my femur stays out I might admit myself to A+E and ask them to put it back. Dislocation is meant to be a medical emergency. Then insist all documentation go to my surgeons.
Does your foot turn inwards as your femur comes out? This is rear subluxation. Don't let the Drs down grade what you're going through. If they experienced the agony they would know a joint had come apart. I'm so sorry to hear you're in so much pain.
As a toddler I would tell my parents my body was aching a lot and we started making A LOT of doctor appointments. My childhood was full of doctor making bad guesses and making me take random pills and supplements.
I got to be diagnosed in my teens, but since chronic pain was not really taken seriously at all at the time and was under studied, I didn't have treatment until last year, now I'm in my late twenties and it turns out I'm meds resistant.
15-16 is when my fibromyalgia really kicked into full gear, but I have had weird nerve pains as long as I can remember that were written off as growing pains/too tight shoes/etc.
I was so active in high school, with drama club, marching band, dance team, and golf team, so I and my parents assumed the extreme soreness was from just so much physical activity.
Went to college and 17 and stopped being overly active, and it just got worse and a new lower back pain started. Around 18, I was diagnosed with Facet Joint Syndrome where my L5 and SI joints would just get stuck on each other if I stood/walked for too long.
It’s been a long decade of treatments since then, but I’m finally in a treatment plan that works about 75% of the time, which is about the best I can hope for.
22, Crohn’s Disease got triggered and all the other lovely conditions I have. I was born with severe heart disease, so obviously that worsened around the time I became chronically ill too. Honestly it’s a whole bag of conditions I got now… at 23. Wooooo! Forgot to mention I had a miscarriage a month before my chronic illness began, so I believe the miscarriage was the stress factor that causes my chronically ill gene(s) to express at that age
I would say probably early adolescence was when Chronic Pain started, although at that point I had no idea what my condition was called, because it didn’t yet have a name. I’m 51, so this would have been prior to the naming of my condition in 1989, say things started for me in 1986 ish… they were considered growing pains, as between grade 6 (5’6”). By the end of the 10th grade I was a shade under 6’8”. Now I have a diagnosis of Cramp Fasciculation Syndrome, although we still want more research into my possibly having the even more rare Issac’s Syndrome. The last 48 hours have been unbearable, some weird cramp, or nerve pain from above my right hip, to my knee. Weakness in my leg, is pretty significant have almost fallen a number of times. Took a bunch of pain meds and edibles… got to sleep before 11pm, but pain woke me by 1am…haven’t slept yet…rolled around on the floor trying to find a comfy position for 3 hours.
Pain seems worse when sitting…and just builds and builds until I m forced to stand. My now ex doctor here didn’t believe in this condition, nor did she consider it worth her time. Not sure where this leads…but it hurts…kinda like an electrical toothache…that’s kind of the feeling…with added random cramps…ugh..
Started around 7. Was told by docs it was growing pains. Got pretty bad by my teens. Was told by docs it was because of anxiety. By my mid 20s was when I was fucked. Was told by docs it was because I didn’t exercise enough. In my 30s I was finally diagnosed with hEDS. I still believe there is more to it beyond that though. But I’m not holding my breath on ever finding out.
Went to my first convention ever, had to do a shitton (like multiple miles worth after being sedentary most of my life) of walking I wasn't prepared for, and everything kinda fell apart after.
Birth. Apparently I was an awful baby, refusing food, refusing to roll, crawl or walk. Hit absolutely zero of my milestones. I didn’t really move on my own until I was three/four. My parents did absolutely nothing about it until I was about 10 and able to vocalise how much pain I was in lmfao
Mid twenties though my back started before then. Had a few surgeries and then the last one got me a spinal infection. I got myself moving and walking (worked really hard at that) to the point I could even run for a train, but it hurt. Then a few years i starter handling it.
I've also had IBS and stomach issues but not where I couldn't work apart from some occasional bad flares.
But just as I start managing my back issues, my IBS has now changed for the worst (changed from C type to mainly D type (I got rediagnosed with IBS, they never found anything despite appetite loss, weight loss, which I gained back but does fluctuate, sometimes severe vomiting to deep green stuff or just one off, nausea and some other things too gross to mention here) and it is agonizing sometimes or generally just painful to varying degrees. I didn't know right upper abdominal pain was a part of IBS, bit of a shock, and I got tested due to anemia and some test results but since I'm not bleeding internally or getting fevers from it, it seems to be just some nasty form of IBS. But it does make me feel ill.
While I don't have IBD, it made me think what some of my relatives have been through (sadly one is no longer with us because of IBD, so I feel bad for moaning really).
I'm so sick of it all. I hoped they'd find something that can be treated enough to make life comfortable. I just started dealing with my back pain too.
Sorry it ended up being a rant. I just hate all this. I get nausea so easily as well as pain (which can range from mild to severe but that's the least often).
Edit: reading through some of these, it's awful what you've all been through, mine is sort of mild in comparison. I'm so sorry.
On a positive note, i'm on a forced weed break (hopefully i'll get some tomorrow) and it's one of those where I'm doing good. But that easily changes, sometimes when I run out it's in a flare and that gets bad. I really need to apply for medical but it's the uk and i do not have much luck when it comes to getting the relief I know works for me. They seem to be strict and i'm so anxious (and I know they will put me on the dry vape if they approve a prescription, they work well enough, i have an old cheaper one and it's gotten pretty good but not great). If i'm not approved, i know it works for me either way. I'm a recovering addict, they're "ok" about the weed, but no opiates for me unless i'm having a procedure.
12 was when the Raynauds kicked in, as well the headaches. Pain and fatigue were bad enough at 17 that I missed a lot of school. Disabled completely by 29.
My grandma said I always used to say that my knees and let's hurt when I was little. When I started working at 14 I had unbearable foot pain and fatigue. When I turned 25 I was infected with Lyme and started to have pain in my dominant hand. Everything went downhill especially after I fell down the stairs and herniated my c4 disc and it was pressing on my spinal cord for about a year before I could convince a Dr to give me an MRI. Now I have fibromyalgia, degenerative disc disease and inflammatory polyarthritis in ALL of my joints. I just turned 32. It's been a rough ride
I tripped over my dog and within 6 months Fobromyalgia set in. I was diagnosed at 12 only because my mom had chronic pain and my dad was a doctor. That saved me from years of gaslighting. By 14 I was homebound from school. I had to drop from college, twice. I was virtually bedbound for three years.
Joints started when I was 12 a mild 4 on the pain scale. In my late 20s is when I got to chronic 7-8. 2 PKR and 2 trillat procedures later, I’m at a 3-5.
GI started when I was 10 it took me until I was 30 to figure out I had celiac disease. Those years of untreated GI issues have permanently affected my body.
After first covid. Then worse every year after 3 cases of covid andv2 shots. Not being conspiracy theorist, its now being considered long covid affects. Sucks. Had a ton of tests done nothing was exclusively conclusive. Mystery that test results were just high or just low bizarre blood work results. MRI's, CT scan, chronic pain a neurologist 2 assessment no clear diagnosis, Got liver disease. Severe anemia requiring immediate blood infusion. Going blind. Cancer. My eye specialist looked at me after seeing result of eye scan my optic nerve is just a white void. He said I was too young for this to be happening. Anywho I think covid had an effect. Doctors are starting to validate it.
I had health issues with back pain etc etoo but this year was horrifyingly bad and I am having a bad flare up now. Almost went on Disability for it....
I've had chronic pain off and on since I was a young teen, but I usually think of age 22 when I was diagnosed with costochondritis as a turning point for me. Before that point it seemed like things were improving for me. At the time I was told it would go away within the month, but it's been nearly ten years and the pain is still there (and I'm now getting very mixed responses from doctors as to whether it really is costo or some other mystery cause) and has brought a lot of friends with it (constant joint pain, even worse fatigue, way more frequent migraines.) I had to quit my volunteer job and stop working out and my digestive system is a mess from all the NSAIDs I've had to take to stay sane.
My mom was in her 40's, I was in my 30's, my daughter was in her 20's when we started having pain.
My mom was in her 50's when it got debilitating by 60 she was finally granted disability. I was in my 40's. My daughter just turned 31 and is still in a "regular" amount of pain.
I was 20 when I got my first case of neurological Lyme. It made me really sore, affected my heart and lungs, and made existing incredibly painful. I just turned 30 in October. I've lost 1/3 of my life to chronic pain and disability, and I'm so angry and upset about it. I should've spent my 20s having fun, going out with friends, and living life, not staying in bed and having life slip by me.
Halloween of 2024, at age 29, I got my 2nd case of neurological Lyme. This one has really affected my legs and joints. A month after getting my 2nd case, I started needing a cane to walk. And by the start of 2025, I needed a wheelchair for longer outings. I'm in worse chronic pain, to the point where I'm going to need to call my doctor and talk about long-term pain management, because Tylenol and ibuprofen can only be used for so long until you need something better.
Birth. My parents said I’d often scream until I passed out right there in their arms. It was soon found my GI was so badly ulcerated there was tissue in my stool. My earliest memories include being trapped in my bed at night, crying into pillows, because my bones hurt so bad I couldn’t walk to the bathroom and was afraid I’d wet myself.
EDS and Mast Cell Activation Syndrome are probably the main culprits - there’s a lot of comorbidities with them.
I want to give you a hug. I'm so sorry you've been dealing with this your whole life. 💔
I’m so sorry. I have hEDS, MCAS and POTS too. Wishing you low pain days!
Another hEDS/POTS (with some MCAS like tendencies) here.
There were some signs when I was a kid. As a teenager, I was an athlete. Was super injury prone and eventually those injuries prevented me from competing in college. Still lived normally otherwise. Then around age 26 I had the big fall out in terms of symptoms and I’ve been significantly disabled (unable to work, participate in my previous leisure activities, etc) since. Typing this from my bed at 2 pm on a Monday.
Ditto here. I also have Ehlers Danlos and many comorbidities. gentle hug
I’m so so sorry. Chronic pain is impossible and cruel as it is-for a baby or child to have to endure it is heartbreaking. 💜💜
I'm so sorry. Are doctors able to control your pain? I sure hope so.
I’ve had periods of pain control, including today, but also many many years of nothing. This year was the first in the last 8-9 that I was able to get a GP (extreme shortage where I live) who is compassionate and incredibly kind, and he immediately restarted my pain control. I’d had a plan for suicide and the pills ready for about two years prior, so he’s literally saved my life
I began hurting when I was in my teens. I'm so sorry you're suffering!! I have been suffering a lot recently as well. It has made me want to give up but I can't for my grands. I love them so much! It would crush them. Only reason I haven't done anything about it. I hope you start to feel better soon! 🫂 ❤️
You win. Mine started at age 16!
I had similar issues, I was told that all I did was scream for nearly the first year of my life, like deafening screams that made their ears ring. I was told that I was colicky, but that was likely just an assumption my family made because they avoid doctors at all costs.
I'm so sorry you've had to go through that my friend :((( wishing you well and many low-pain days!
realised the pain wasn’t normal aged 11, by 15 i had to stop playing tennis (previously played at least 3 times a week) as my shoulders couldn’t take it anymore. by 15/ 16 my attendance was awful and it was frequently near unbearable to walk. now 19 and have found things that work to help, but still have significant pain, subluxations and unstable joints. i’ve now learnt to pop my hips, knees and shoulders which was honestly life changing. even did it while writing this lol
(edited because of bad wording)
This sounds just like me, I went to my gp this year saying i want an mrj ive had pain since i was 14 for them to say i have nerve pain because im tall! Mri was rejected. Saw another gp who said i have mild scolisis and diagnosed with hypermobility elhers danlos , mri results said i have protruding discs scmorls nodes (what?!!) Bulging disc touching nerves and degenerative changes in my back, all my gp sent was a text to say "its likely to cause some pain, there isn't a lot we can do" ive just turned 27 with no idea where to start as my gp is clearly useless
Wow! My experience is more and more GPs/PCPS/psychiatrists are useless regarding chronic pain and anxiety. There has been a slow and sure movement away from opioids and benzos over the past 25 years. The use of prescription medications that once gave us a chance at a reasonably comfortable life are utilized less and less.
I would suggest looking for another GP. Typically the good ones are old school and hard to find. Meds are not a cure all, but sure can help in a lot of cases.
I wish you all the best and glad you are here. My personal experience is prayer and legwork are very important.
Respectfully,
Jace
Eleven for me too.
Sometimes I feel like I'm actually a bit lucky as I never got the chance to live an adult life without pain, so don't know what I'm missing.
Hi, Could you explain how to pop your hip back in place please? I've realised, only over the last year, that I'm suffering subluxation of my hips. Mostly they pop out and back in but sometimes the joint stays out for weeks and I can barely walk. I've insisted on an MRI which shows both labrum are torn. The right labrum has a gap, where the femur has pushed out for the last 14 years. Even with the evidence I'm just being sneered at by the hip surgeon, who says the only way to dislocate your hip is in a car crash.
i’m not sure what the exact issue is with my hips as my dr has also said it’s unlikely to be a true subluxation and perhaps labral instability or general instability (honestly, i have no idea). the way i find short term relief (altho not recommended but pain is debilitating, just try to not overuse it) is by doing a kinda backwards lotus position where my foot is on the outside on my hip and leaning at a diagonal angle out/ forward. i get a loud asf cthunk sound and the pain is gone for a few hours to a few days. don’t push too hard, this may not work for you (obvi) and also sometimes it just isn’t ready to pop! i hope things work out for you soon and you’re able to find some semblance of relief!! :))
popping your joints is the best lol....
kinda had irregular attendance, still struggling. It sucks hope you're doing well
25 a week after giving birth as that’s what set mine all off the trauma of it .
Did you get a childbirth injury or was it some condition that was brought on from the pregnancy/chilbirth?
Mine started at 22 a month after a miscarriage (it was unplanned and unexpected though so it was only physically traumatic)
18 I woke up paralyzed from the waste down from cauda equina syndrome. I had emergency surgery which saved my ability to walk but screwed my bladder and gi system forever and the pain has been ruining my life since
Birth - hospitalized several times as an infant -cried and cried , every time someone touch me I cried more . Ran every test ( this was in the early 70’s) couldn’t find anything wrong . Eventually I snapped out of it , would have these massive mystery illnesses every few months to years . Fatigue, gastrointestinal issues, severe pain , headache , fog, malaise, no appetite, inflammation… and I’m 54 . I’m now 3 years in a non stop flare up - it’s pure insanity
I'm sorry you are suffering like that. I was diagnosed with chronic fatigue because I just cannot get up and walk more than 20 meters,(on a really good day), spend 80% of my days in bed, always thirsty, feels like a hard days work. Thing is I haven't done anything. I think it's taking everything I have dealing with the pain, GI issues, brain fog, and no appetite. Add severe chronic back/leg pain and anxiety on top of everything and get WTF.
I'm really saying I can identify with you in so many ways. I praise the Good Lord for a couple of fantastic doctors. I know it has to be insane to live like all of us do.
The pain and suffering can be constant misery. Someone recently messaged me saying "OUR KINDNESS TOWARDS EACH OTHER HERE MAKES THINGS A BIT MORE BEARABLE."
I'm grateful you are here, praying for you, hoping you have inner peace, and appreciate your heartfelt share.
Respectfully,
Praise the Lord
Jace
I'm 64, in a couple of weeks, and hav
I'm so sorry. I truly feel your pain. I'm 68 and my pain is now constant and pretty severe. I feel like my days are numbered and I tell my PCP that I'm dying a slow, painful death. Sending you hugs.
17 - 1st herniated disc likely from EDS.
I was likely a ticking time bomb no matter what I did. I’m very thankful that I got a normal childhood & have memories of what it used to be like to move my body freely.
14 🫠
same 🙃
37 - i almost feel lucky to have lived 37 years without this constant pain seeing how so many of you were so so young when your pain began :(
24
Same! 2 weeks after my wedding
1 week after my birthday 😭
No!! That's not an acceptable birthday present by fate.
Worst gift ever. I’m happy you got to enjoy your wedding before the pain. Truly.
You guys too, eh? I limp3d to stay off a broken toe and threw my back out for 6 months.
39 after a tractor trailor turned in front of me and I hit it going about 55. I broke 14 bones including C1 and C2 in my neck. I'm 63 now and I wish I had just died that day. I've had 29 surgeries which include 5 joint replacements in the last 11 years. I now have numerous health issues related to all this in addition to the chronic pain.
How awful. I'm so sorry.
Thank you, you're very sweet! Most days I deal with it much better but it has been rough lately.
In PT?!
Big computerized machine was supposed to take my leg from 0 to 45 as I was recovering from knee surgery and had been in a cast for 6 weeks. It accidentally took me from 45 to 90 and I was fully strapped in the seat so I couldn't give any. Student PT grabbed my leg as fast as he could but did not let his supervisor know. I kept complaining over the years that something was wrong but got gaslight, your fat, you've had surgery, etc.
Finally saw a good orthopedic surgeon in my late 20s who recognized I needed surgery but I needed a top level surgeon. Travelled 800 miles to top doc who was totaled surprised mid surgery to find the tear of course. He estimated it happened 6-8 weeks after my earlier surgery.
I had other medical stuff going on too like urinary reflux that caused one of my kidneys to fail. CFS when I 19. TMJ surgery also when I was 16. Chronic migraines. Hypermobility, etc
Oh man that’s awful and sounds terrifying I’m so sorry you went through that and are still going through it.
Can relate...
Fractured a lumbar disc in PT. My neurosurgeon said no more.
16 it all started. By itself...
68, I’m 71 now. I guess we are lucky, hard to feel that way though, right friend? Hope you have a decent day and hope you have someone with you to talk to.
Yes, it’s hard. I’m now 76 and other health issues rear their heads as well as the loss of family members and friends. But we must go on as best we can. Wish you also a good day ❤️
{{hugs}}
25- hit by lady texting and driving
15/16 with fibromyalgia and occasional severe periods of back pain. Got my fibro under control over two years ago, but now I have had chronic back & nerve pain for over a year :_D
11, ended up with neuropathy
35 going on twenty years now, f chronic pain.
23, after a car accident. Damaged L4,L5 and C5,C6,C7. And of course, I worked hard to make a living anyway. I was pushing through until I couldn't take it anymore. Now, fibromyaglia, ruptured discs, osteoarthritis, reticuopathy.... been on everything from fentanyl suckers, patches, oxycontin. Of course, until the big " punish the chronic pain cust for drug addicts came along. I've had shots, ablation, and surgery and currently can not get an increase in meds after being on the same amount for 7 years. I'm so disappointed. Currently 10mg. Oxycodone 3Xs day. 67yr old female raising 14 yr old beautiful granddaughter.
I was 3 weeks old when I started screaming non stop, at 18 months I moved my parents hands from rubbing my stomach(they thought it was gas) so my legs. Never slept well until I was 22 and got my first round of oxicodone
About age 13.
27
Started at 26 first herniated disc in my spine… then at 32 tried surgery and the only reason I’m still on this earth is cus my kids. It increased my pain 10 fold. I’m 34 now and not excited for my 40s or further
35 :(
27 so i"m luckier than most as i had good fun, expetienced college life etc. I stopped working in my mid 30's. It has seriously impacted my parenting abilities as I've become progressively worse over the last 20 years. Several surgeries and I'm still deteriorating. Im pretty much housebound. This sucks.
Early twenties, but got way worse at 36.
Wow surprised these are all so early. 33 for me. Failed RFA made all my back problems a lot worse. Always had neck problems, have had back problems for 6 years… but it didn’t get really bad until now.
in kindergarten when I was four on the first day of PE class when I realized they were gonna force me to do these torturous physical movements every single day for the rest of my education. And at four years old, when you contemplate 12 years of education with physical torture every day it’s horrifying.
12 :')
I had emergency surgery and was left permanently disabled at 12yo, racking $96,000 in medical debt in one year. That debt was paid in cash, by me. Not an insurance agency, not a parent or a relative. By me.
I’m in pain when I’m sitting. I’m in pain when I’m standing. I’m in pain when I’m laying in bed, and over twenty years later still get jolted awake by pain.
Not for nothing, I really needed that money more than the fucking state.
I started having back problems in high school. My doctor did an MRI and found a few disc issues. At age 40 I had a terrible vehicle accident leaving me partially paralyzed and in terrible pain. Surgery was not an option. More CTs, MRIs, PT and hard core pain meds. In 3 months the paralysis was mostly gone. I'll be 64 in a couple of weeks. My bad luck landed me in 2 more bad vehicle accidents in the past 2 years. I have to say age 40 started my real downhill slide.
Halfway into the year, age 20… it’s CRAZY to think it’s been 17 years. I’m glad I didn’t know then, I probably wouldn’t have made it this far if I knew what I’d have to go through for the next 2 decades. Cheers to all the chronic pain ppl making the best of their situations! 🥂 👏 ♥️
3, 3, 3. Three years, three months, three days.
I flew solo, from above my father's head, all the way down to the floor behind him, and got completely bent in half, backwards.
Sixty years later, the X-rays still showed vertebra misaligned.
As long as I can remember, the pain I would feel in my legs as a young child makes my heart break 😮💨
10 is when it started to impact my life because that’s when i got my period. endometriosis is even more exhausting for a child who’s still expected to do everything like normal. i’d often sleep on the floor in a couple of my classes, on or off my period. it just hurt all the time
as i grew up, more and more became wrong. my knees, my lungs, my heart, my joints. i have chondromalacia in my knees, severe asthma partially caused by a congenital heart defect, and diagnosed rheumatoid arthritis. all of it diagnosed in the last 5 years, and i’m only 25
started at 8~9, got worse around my adult years. became a hermit near enough lol around 21-22
As young as I can remember. I’ve had back pain and “growing pains” since as early as I can remember, and my parents said it’s been as long as they can remember too. It started getting worse and effecting my daily life around age 15. By 16 I was using forearm crutches most of the time. 17, using a wheelchair part-time. And by 18 I was in a wheelchair full-time. Now at 20, I’m mostly bed bound
I never remember not being in pain.
11, but it got increasingly worse after 14. I turn 30 next week and am actually receiving adequate pain management for the first time in my life
So glad for you! Pain management changed my life.
I was 11 years old when I started taking opioids on a regular basis; Cancer has fucked my life.
Fuck cancer!!
10 was when my gallstone pain started it took them 7 years before they stopped telling me it was period pain or childhood ibs and had me go for an ultrasound and then I had a 2 year wait for surgery, so 19.
A few weeks after that surgery I contracted shingles, then gradually over that year I started to get pain in my joints all the time, headaches, stomach and bowel issues. They diagnosed it as ME but the pain is a bigger issue than the fatigue. I can't be bothered to argue with them though, either way they say it isn't treatable.
I actually muddled on for a long time, being young and feeling like I had to, so for ten years that I first had the diagnosis I was working full time in community care. Well, I injured my back twice requiring time off and diazepam and that's never been fully better since. So there's an extra bit of pain.
Recently the whole condition seems to be getting worse. I gave up working 4 years ago and tried to use the previously expended energy to be a good wife to my husband and travel with him and potentially I've run myself down by over exerting. I'm a bit scared I may be going from mild to moderate :(
60 and bam.
14 was when it became noticable, things happening later on in life made it worse
8
14-15- PCOS symptoms started and I was properly diagnosed at 20 after years of being told my symptoms were all in my head.
15-16- developed a stress fracture in my lower vertebrae from cheerleading, gymnastics, and springboard diving. Went from All American Athlete to being in chronic pain every day.
22 I had AAD surgery when I was 11 and things significantly improved for me but now it looks like I'm worse off with doctors not knowing what the problem is and how to treat it.. It's been 5 years, I'm 27 now.
Luckily not until age 64. I don’t think I could have made it this far (age 66) if it had started when I was younger. My hats off to those who have. I feel for you. Every day is absolute hell.
16 :/
That was 1993...
14 for the chronic pelvic pain ended up with hysterectomy at 38.16 had shingles on my back nerve pain ever since 18 pregnant mild shingles pain down my arm had operations on elbow and shoulder throughout my life .20 my daughter was born facing up cracked coccyx and since then crippling muscle spasms plus facet joint pain.Have loads of other stuff going on am 52 now but still here.
Early 30s 🙃
38 is when it it happened
Several of my diagnoses are genetic so I’ve always been in pain to some extent. But my health took a nosedive at age 25. Severe endometriosis and adenomyosis controlled my life. Then just as things were getting better, covid hit and I got sick almost immediately. My body has never been the same.
The last decade has been extremely difficult. I’ve survived the darkest and most painful days of my life so far.
My pain is caused by stage 4 endometriosis, hEDS, and ankylosing spondylitis. Plus adenomyosis before my hysterectomy. It’s a terrible combination!
22, I'm 42 now. 20 years of mri and people acting like I either don't hurt or annoyed cause I'm hurting on their time. F
First car accident in 1996 caused bulging disks, then second in 2002 started fibromyalgia. Been in chronic pain since about 2003…..
16 years old. I was diagnosed with tendinitis in my right foot. Apparently, I “have been overcompensating with my left knee and limping from my tendinitis, wearing away all the cartilage in my left knee.”
At 19, in a tubing incident, I tore all the tendons in both my shoulders, got tendinitis in my left one super bad. Had that gnawing pain every work shift. I was a manager at Famous Footwear and lifting the shoe boxes over my head KILLED my shoulder.
At 26 I was diagnosed with hyper mobile Ehler’s Danlos Syndrome. Every single joint in my body dislocates laterally and/or overextends. I also have a good amount of dysautonomia and heart/tendon/ligament issues.
It took 5 years of scoliosis X-rays at the Mayo Clinic until I was told my curve (31 degree curve on the top, 36 degrees for my bottom curve with a twist to the left moving my whole rib cage.) I was told at 26 that my mri and ct showed osteoarthritis in every joint of spine. Despite all of that, I was cleared to finally start Yoga (any kind of exercises had been put on hold).
34 or so. First of 5 back surgery at 35. It sucks
In my early 30’s. I’m 70 now
31-32. Several prolapses in my back, surgery probably won't make it better, so the only solution is painkillers but even with fresh mr pictures showing my fucked up back they still shame me for needing strong painkillers..
I was 22, about to turn 23. I’m 47 now, and it completely derailed my life. Had to quit school, had to go to part time work, then no work, took 6 years to get social security disability. All of my dreams and goals, just gone. I was so close to finishing my degree, and hopefully having the career of my dreams. I am still so angry and so resentful. I’ve accepted it a long time ago, but I won’t ever be okay with it. In the last year, a new type of severe pain, along with literally every other health condition I have, even the ones what had been essentially dormant, have further wrecked my life, and my doctors are at a loss. For a month now, I have been in the worst multi symptom flare I’ve ever experienced. I’ve never felt this bad for this long. On the 25th, I even broke down and went to the ER, not for pain, but because I legit thought I was experiencing imminent organ failure. Again, no answers, but the ER doc did speculate about a possible cause, which is more than anyone else has done in the last year, essentially.
I had some beginning issues that flew under the radar and came across as “laziness” in high school. I could just deal. The real onset happened around ~28ish, but the severity has majorly increased in the last two years. I’m 33 now.
22 years old for me. That's 50 years ago and was the first sign of the spine problems that would follow me the rest of my life. I've been on prescription pain meds for the last 30 years.
At about 21 or 22 when i was still in the marines my platoon was doing martial arts training before a range i got flipped up in the air and heard a loud pop go off in my shoulder then my arm went numb shortly after and i couldnt bear no weight and for a solid 2 weeks my hand swelled up like a ballon turned dark purple and they wouldnt let me get it checked and was forced to do pull ups all fudged up and carry full loads on it about 120 lbs worth of xtra gear but after i had 3 months or so left on my contract they finally let me get seen after so they sent me some pt guy and after a few shots and rounds of pt with him they gave me an mri i went back to my battalions aid station let em know and as i was sittin there i heard battalion aid officer and his assistant yell out" what the fuck " which made laugh for whatever reason amd come to find he said i absolutely destroyed everything in my shoulder and rotator cuff and gave me a choice i could either stay in a few extra months for a surg or get out and have it done by the va needless to say i choose va and they guy gave me a permanent light duty sheet and a prescription for vicodin with refills and since then had other problems to especially with my spine and my shoulder injury started in 06/07 isj
I'm 22 years old now. And now, we have no fucking idea whats going on with me.
Birth. Chaos continued as brain surgery at 3 day old and things have just gone downhill since
25 is when I started to notice some stuff. 26 I had 11 colonoscopies from 26-29 yrs. 29 it started me getting my ass to the doctors because I couldn't handle it on my own. 30 I bled every day. Had the absolute worst cramps. 34 had emergency hysterectomy 34 had lumps removed in breasts 35 had 2 back surgeries 36 had 2 back surgeries 37 had both hips replaced 37 diagnosed with Rhematoid Arthritis and Complex Mixed Connective Tissue Disorder 38 had spinal fusion, 14 levels 39 diagnosed with Psoriatic Arthritis
41
I was 11 and then before my 20s things got worse due to a full hysterectomy and then cyctectomy (full bladder,urethra,lymph nodes removed. Then it was one diagnose after another I have been to most all of the major hospitals on the east coast over the years. I am currently back to being bed bound.Been on hospice 3 times and I’m still here so I’m back on palliative and home health.It just gets worse some days I wonder how and why I am still here but I keep praying for some better answers.
It has always caused problems for me, I just didn't know what it was until it went quiet from the age 17 til I was 23 when I started getting migraines daily in March 2024. Pretty much every day since March 2024 I have dealt with migraines. Since then I've dealt with chronic fatigue, chronic pain, & just kinda grieving when I was 17 when I didn't have pretty much any health problems other than getting colds.
I didn't realize until I was diagnosed & started learning about migraines that the "panic attacks" I was having daily in middle school after lunch weren't that, they were migraines. I think the reason they disappeared for years was because I stopped eating the thing that triggered the worst of them, gluten.
I hit 60 and everything went tits up. My back (surgery on L5S1) right side. Now the left side has herniated. I still have chronic low back pain and neuropathic pain in my foot and calf because the sciatic nerve was compressed for so long. I rattle with painkillers. Gabapentin (shortly to be switched to pregabalin), co-comomol ad lib and tramadol too just in case, sometimes it seizes up and I then need diazepam to help it settle.
Most recently I’ve been suffering from rotator cuff pain because I’ve been swimming too much (I swim to help me forget the back pain).
32
Way late, 52. It was there for decades before, but has been fucking me up for not quite the last two.
I grew up "poorly" from neglect and abuse so I was already having a lot of immune issues, in the 90's they counted it Childhood Toxic Stress Syndrome
So when I was 17 and I broke my skull it was a problem because of my allergies and my sinuses getting a double whammy, then in the mid 90's and the early 2000's I got the two spinal injuries from DV and then SA
25
21
18
Pfff… in my teens.
I have hEDS and already had over 15 daily dislocations/subluxations at that point and after I wasn’t taken seriously when my hip and shoulder were dislocated I had to walk home over a mile on a dislocated hip.
At home my parents helped put that hip back in place, but that shoulder just wouldn’t go back. It took days before I could see a doctor willing to put it back.
And that basically started the chronic always present nerve pain.
I was only 24.
18 just as I was about to move out and start my life.
26/27
37.
We think at birth but no proof until 11 months old
When I was 13 I got long covid and since then I have chronic fatigue, pain and headaches
33, noticed a twinge when I walked that got worse and worse, and now I can hardly walk.
the pain stuff begun at 12 but it wasn’t chronic until I was 14
15/16 :/ ughhh
30
I found a lump at 30 and within 3 weeks I could not walk. They saved my leg but the tumor and all the surgeries caused permanent damage. That was over a decade ago. I’m alive, and life has gotten better but the pain is hard. Tonight I was at my parents and just so exhausted, I only work like 4 hours a day and my pain meds help me manage. But I feel like I am twice my age.
Every ten years starting with a bike accident around 55 years old. Once hospitalized for a week in 2010. Ok until 2025 when I burst a disc again pushing pots in a greenhouse where I worked. You get better. You have to take extreme care of your body. At 74, I teach exercise classes for seniors. I’ve learned to use my core and teach others. Feel better 💐
Age 24 after childbirth. I have hEDS & although I’d always struggled with pain, giving birth broke my body to the point it went more into the “unmanageable without walking aids & strong pain meds” realm rather than just the mild annoyance it was before
Birth
Around 30
High school. I had to stop playing sports because of my legs
30
27 too!
Do you mean by backwards lotus that you're lying on your face and crossing your legs behind your back? I once put my femur back by putting my knee on a high stool and putting all my weight on it and wiggling. I was at an open air concert and walked out normally, after weeks of severe pain. I've never managed this again and, of course, neither my hip or spine surgeon believe me. What is it with the medical profession? I guess with the NHS sneering is free. I think the next time my femur stays out I might admit myself to A+E and ask them to put it back. Dislocation is meant to be a medical emergency. Then insist all documentation go to my surgeons. Does your foot turn inwards as your femur comes out? This is rear subluxation. Don't let the Drs down grade what you're going through. If they experienced the agony they would know a joint had come apart. I'm so sorry to hear you're in so much pain.
15- fibromyalgia. However, I did not get diagnosed until 3 years after, at age 18
As a toddler I would tell my parents my body was aching a lot and we started making A LOT of doctor appointments. My childhood was full of doctor making bad guesses and making me take random pills and supplements.
I got to be diagnosed in my teens, but since chronic pain was not really taken seriously at all at the time and was under studied, I didn't have treatment until last year, now I'm in my late twenties and it turns out I'm meds resistant.
When I was 17, broke my back on a trampoline
19.
21, 38 now.
23, I was so young, I’m 31 now and worse than imaginable. This life is truly twisted, I didn’t sign up for this.
16 - stress fractured my spine. 22 - first herniated discs and first surgery. It was all downhill from there.
49
22
15-16 is when my fibromyalgia really kicked into full gear, but I have had weird nerve pains as long as I can remember that were written off as growing pains/too tight shoes/etc. I was so active in high school, with drama club, marching band, dance team, and golf team, so I and my parents assumed the extreme soreness was from just so much physical activity. Went to college and 17 and stopped being overly active, and it just got worse and a new lower back pain started. Around 18, I was diagnosed with Facet Joint Syndrome where my L5 and SI joints would just get stuck on each other if I stood/walked for too long.
It’s been a long decade of treatments since then, but I’m finally in a treatment plan that works about 75% of the time, which is about the best I can hope for.
18
22, Crohn’s Disease got triggered and all the other lovely conditions I have. I was born with severe heart disease, so obviously that worsened around the time I became chronically ill too. Honestly it’s a whole bag of conditions I got now… at 23. Wooooo! Forgot to mention I had a miscarriage a month before my chronic illness began, so I believe the miscarriage was the stress factor that causes my chronically ill gene(s) to express at that age
11, endometriosis 33, migraines 36, lower back
I would say probably early adolescence was when Chronic Pain started, although at that point I had no idea what my condition was called, because it didn’t yet have a name. I’m 51, so this would have been prior to the naming of my condition in 1989, say things started for me in 1986 ish… they were considered growing pains, as between grade 6 (5’6”). By the end of the 10th grade I was a shade under 6’8”. Now I have a diagnosis of Cramp Fasciculation Syndrome, although we still want more research into my possibly having the even more rare Issac’s Syndrome. The last 48 hours have been unbearable, some weird cramp, or nerve pain from above my right hip, to my knee. Weakness in my leg, is pretty significant have almost fallen a number of times. Took a bunch of pain meds and edibles… got to sleep before 11pm, but pain woke me by 1am…haven’t slept yet…rolled around on the floor trying to find a comfy position for 3 hours.
Pain seems worse when sitting…and just builds and builds until I m forced to stand. My now ex doctor here didn’t believe in this condition, nor did she consider it worth her time. Not sure where this leads…but it hurts…kinda like an electrical toothache…that’s kind of the feeling…with added random cramps…ugh..
14
Started around 7. Was told by docs it was growing pains. Got pretty bad by my teens. Was told by docs it was because of anxiety. By my mid 20s was when I was fucked. Was told by docs it was because I didn’t exercise enough. In my 30s I was finally diagnosed with hEDS. I still believe there is more to it beyond that though. But I’m not holding my breath on ever finding out.
0.
Migraines started around 7. Diagnosed with fibromyalgia at 14. It all went downhill from there.
25
I was diagnosed at 34, but I had my lung collapsed before, but noone could diagnose it normally
52, following a routine surgery
22-23
Birth. Apparently I was an awful baby, refusing food, refusing to roll, crawl or walk. Hit absolutely zero of my milestones. I didn’t really move on my own until I was three/four. My parents did absolutely nothing about it until I was about 10 and able to vocalise how much pain I was in lmfao
Mid twenties though my back started before then. Had a few surgeries and then the last one got me a spinal infection. I got myself moving and walking (worked really hard at that) to the point I could even run for a train, but it hurt. Then a few years i starter handling it.
I've also had IBS and stomach issues but not where I couldn't work apart from some occasional bad flares.
But just as I start managing my back issues, my IBS has now changed for the worst (changed from C type to mainly D type (I got rediagnosed with IBS, they never found anything despite appetite loss, weight loss, which I gained back but does fluctuate, sometimes severe vomiting to deep green stuff or just one off, nausea and some other things too gross to mention here) and it is agonizing sometimes or generally just painful to varying degrees. I didn't know right upper abdominal pain was a part of IBS, bit of a shock, and I got tested due to anemia and some test results but since I'm not bleeding internally or getting fevers from it, it seems to be just some nasty form of IBS. But it does make me feel ill.
While I don't have IBD, it made me think what some of my relatives have been through (sadly one is no longer with us because of IBD, so I feel bad for moaning really).
I'm so sick of it all. I hoped they'd find something that can be treated enough to make life comfortable. I just started dealing with my back pain too.
Sorry it ended up being a rant. I just hate all this. I get nausea so easily as well as pain (which can range from mild to severe but that's the least often).
Edit: reading through some of these, it's awful what you've all been through, mine is sort of mild in comparison. I'm so sorry.
On a positive note, i'm on a forced weed break (hopefully i'll get some tomorrow) and it's one of those where I'm doing good. But that easily changes, sometimes when I run out it's in a flare and that gets bad. I really need to apply for medical but it's the uk and i do not have much luck when it comes to getting the relief I know works for me. They seem to be strict and i'm so anxious (and I know they will put me on the dry vape if they approve a prescription, they work well enough, i have an old cheaper one and it's gotten pretty good but not great). If i'm not approved, i know it works for me either way. I'm a recovering addict, they're "ok" about the weed, but no opiates for me unless i'm having a procedure.
12 was when the Raynauds kicked in, as well the headaches. Pain and fatigue were bad enough at 17 that I missed a lot of school. Disabled completely by 29.
22, the night before I graduated college.
Birth
Around 16
16 :/ Just randomly a day before school started..
Mid forties.
My grandma said I always used to say that my knees and let's hurt when I was little. When I started working at 14 I had unbearable foot pain and fatigue. When I turned 25 I was infected with Lyme and started to have pain in my dominant hand. Everything went downhill especially after I fell down the stairs and herniated my c4 disc and it was pressing on my spinal cord for about a year before I could convince a Dr to give me an MRI. Now I have fibromyalgia, degenerative disc disease and inflammatory polyarthritis in ALL of my joints. I just turned 32. It's been a rough ride
21
25, back messed up from a car accident
23
birth 🤷🏻♀️
Joints started when I was 12 a mild 4 on the pain scale. In my late 20s is when I got to chronic 7-8. 2 PKR and 2 trillat procedures later, I’m at a 3-5.
GI started when I was 10 it took me until I was 30 to figure out I had celiac disease. Those years of untreated GI issues have permanently affected my body.
45
57...
I had health issues with back pain etc etoo but this year was horrifyingly bad and I am having a bad flare up now. Almost went on Disability for it....
Fucked up? 27. Disabled? 42. Fused then but not much better, and pretty ship wrecked at 59
17
14
About 32
Although if you count IBS… 8
I've had chronic pain off and on since I was a young teen, but I usually think of age 22 when I was diagnosed with costochondritis as a turning point for me. Before that point it seemed like things were improving for me. At the time I was told it would go away within the month, but it's been nearly ten years and the pain is still there (and I'm now getting very mixed responses from doctors as to whether it really is costo or some other mystery cause) and has brought a lot of friends with it (constant joint pain, even worse fatigue, way more frequent migraines.) I had to quit my volunteer job and stop working out and my digestive system is a mess from all the NSAIDs I've had to take to stay sane.
Significantly impacted by my teens. Fucked by late 20s.
My mom was in her 40's, I was in my 30's, my daughter was in her 20's when we started having pain.
My mom was in her 50's when it got debilitating by 60 she was finally granted disability. I was in my 40's. My daughter just turned 31 and is still in a "regular" amount of pain.
That's interesting because I was late 30s, my daughter, mid 20s, and my son, late teens. I wonder why it's like that?
One of my guesses is maybe more toxins in foods and environment causing more inflammation resulting in pain earlier and earlier?
I was 20 when I got my first case of neurological Lyme. It made me really sore, affected my heart and lungs, and made existing incredibly painful. I just turned 30 in October. I've lost 1/3 of my life to chronic pain and disability, and I'm so angry and upset about it. I should've spent my 20s having fun, going out with friends, and living life, not staying in bed and having life slip by me.
Halloween of 2024, at age 29, I got my 2nd case of neurological Lyme. This one has really affected my legs and joints. A month after getting my 2nd case, I started needing a cane to walk. And by the start of 2025, I needed a wheelchair for longer outings. I'm in worse chronic pain, to the point where I'm going to need to call my doctor and talk about long-term pain management, because Tylenol and ibuprofen can only be used for so long until you need something better.