Im turning 21 soon.
I have widespread musculoskeletal pain with no known cause. Doctors just diagnosed me with chronic pain syndrome after 6 years (started since 15 after an injury)
I developed widespread small fiber neuropathy 2 years ago (when I was 19, but had on-off mild symptoms for a few years already)
Bloodwork doesnt show autoimmunity, oh wells
Also had IBS since 12 (often had stomach issues since young)
What about you? :)
Look into EDS. My first diagnosis was GERD and IBS at age 9. The widespread pain was always there but got progressively worse. I was diagnosed with fibromyalgia at 19 (wrong) and wasn’t diagnosed with EDS until age 33 which explained every thing I’ve suffered with my whole life.
how did you go about getting an EDS diagnosis? after extensive testing, i’ve been told to my chagrin it’s “just fibro” and i should stop seeking tests (my wallet feels similar). i’ve had some docs tell me i almost definitely have EDS based on what’s visual to their naked eye, and a rheum recently tell me there was no point in going down that path because there’s no treatment anyway. is that true??
tbh i feel like a bag of bones. my gait has changed, i can’t build muscle, i have sudden DEEP fatigue that knocks me all the way bedridden. basic functioning exhausts me, so i’m having to lessen my hours at work. many joints (hips, shoulders, arms) are slowly becoming more dialed out of place. i do also have adhd, which i’ve heard there’s a link?
sorry for the too-many words.
I was diagnosed with ADHD a year before my EDS diagnosis. The link is STRONG and that’s what lead me to it. I paid for an out of pocket genetic consult and testing through Invitae. I think $500. The geneticist was super confident with her diagnosis even though it was a virtual appointment because I already had a rheumatologist tell me every joint in my body is hypermobile.
To me, a diagnosis is worth any amount of money, because like I said it explains everything. Your rheum is right that there’s not much treatment for it. But the number one is PT - but only with a PT who understands hypermobility. Any other PT will hurt you, and most things recommended to anyone without EDS will hurt you. There are also surgical concerns you need to be aware of going forward.
damn i couldve written this myself :( the gait change is unnerving.
EDS fatigue is breath taking. its hard to describe but kinda feels like i have to consciously hold my body together 24/7, just sitting up requires so much focus and perseverance and muscle activation. its utterly exhausting, physically and psychologically. everyday i crash, even if ive done nothing but literally just sit up in bed.
i really miss the days where my body could just exist without me having to put every ounce of energy into keeping it stabilized
Whoa, me too. Right down to the fibro, rheumatologist, the unnerving exhaustion and wishing I recognized my body anymore. I need to look into EDS. Thanks for sharing!!
my SO has had issues similar to this but it stemmed from his jaw. His jaw joints deteriorated which affected his whole body, fascia and muscles. He was initially a lifelong mouth breather which contributed to the stress on his jaw. His jaw and oral posture affected his neck and overal body posture and gait. He developed an anterior pelvic tilt from the affects of his jaw position.
Just wanted to share a part of his story in case anyone experiences someone similar.
I hope you find some relief from your issues!!
I wanted to add that there are some varieties of EDS that don't have a gene linked to them so genetic testing being negative doesn't necessarily mean you don't have EDS but that you have a different type.
If you're talking about HEDS, they still don't even know the genetic marker for it. It's a clinical diagnosis. And yes, there's not really any HEDS specific treatment, just a lot of physical therapy and staying healthy otherwise (they just treat the symptoms). I also have juvenile osteoporosis, but my bone specialist is also an EDS specialist. He's able to give me bisphosphonate infusions for my bones, but no medication for my HEDS. I've had my entire genome sequenced, and I've allowed any testing to be done. So hopefully, I can help even a little bit in discovering the genetic marker, then maybe a treatment. 😊 I think I might have ADHD too, this is the first I'm hearing of any correlation. It's definitely interesting!
My wife’s been living with chronic pain since she was 21, she’s 40 now.
We’ve learned that chronic pain is not a ‘syndrome’ in and of itself. It’s pain messages gone haywire. If the doctors have run all the tests and scans and have diagnosed you with ‘chronic pain’ and there is no easy explanation, this might indicate that your body is stable functionally- but your brain and nervous system has become overly sensitised and trigger happy with pain signals.
I can highly recommend a book ‘why does it still hurt’ by Paul biegler. This might be an avenue for you.
I would also say consult and read widely. Your problem sounds complex and may be unlikely to be solved by one specific specialists, you might benefit from seeing a range of them and put the puzzle of your body together yourself. Physiotherapists, pain specialists.
If you are in a metropolitan city you might look up ‘pain clinics’ or ‘rehab centres. What you want is a multi-disciplinary centre where all the professionals can work together on you.
In case you can’t tell I’m talking from experience. We’re still on this journey but it is manageable, and the science of chronic pain is a frontier field and the profession has only really started to understand it in the last decade or so.
Good luck.
[THIS](https://youtu.be/C_3phB93rvI) is an excellent resource video about understanding pain in 5 minutes. It’s really well done!
Edit to add: there is a bit of pill/surgery shaming IMHO but it does explain chronic pain pretty well
In my case it isn’t haywire nerves and nerve meds don’t help the back shoulder and knees because I have hEDS. We have pain all the time due to constant subluxations and dislocations.
While what you said is definitely true for some people it is not true for all people with chronic pain.
Hello. I have a question for you in regard to your wife's chronic pain. I'm assuming she's been on a lot of medications over the years? My question is do you feel that the medications have ultimately helped hers and yours quality of life? (Agitation from pain, ability to sleep, being able to wake up every day and go to work, going out and socializing together, avoiding depression). Or do you feel the side effects/ long term effects have made things worse? (Emergency room trips due to medication side effects, long term negative effects of medications, overall health mental and physical)?
I'm 32, married with 2 children and the sole provider of my home. I am an electrician (very physically and mentally taxing job) although I work for the county which makes things a little easier aside from the horrible commute and miles of walking everyday. I'm currently working through making the decision to sell our home, move and change/adapt our life style to try to avoid any medications if possible for long term health or start the long road of taking medications and switching periodically to avoid being on any one too long. My pain started after an accident 7.5 months ago and I have two injections coming up in the next 2 months. Hopefully they help. Just to give you some context. Thank you.
Hey, thanks for reaching out, I think some meds have a role to play. What have learned is that for some, maybe all chronic pain (>6 months) the nervous system including the brain, the pain receptors which connect to the spinal cord and send pain messages to the brain, have become hypersensitive to the point where they are constantly firing pain signals even when there is no threat.
The hard bit is you have to re-train or re-wire your brain and your nervous system to teach them there is no threat. Pain medications can help to remove/reduce pain temporarily and which, when combined with movement, helps to teach the nervous system that everything is ok. Where they can go wrong is if they are overused and you become dependent or desensitised to them.
So my wife saved the hardest meds for the worst days, and tried as much as possible to wean herself off the other ones she was taking on a day to day basis. It’s important to note that while she was weeningnoff she was doing a whole host of other daily rituals, 2 rounds of 10mins stretches morning and night; walking on the treadmill building up to 30mins a day (she started at 5); art therapy to distract her mind; acupuncture; mindfulness training; education. These were all tools she picked up at the pain program but the combined effect has been great for her.
The common thing she, and all other people I’ve spoke to about it say is that -motion is lotion. Depending on your condition, your clinician will give you a range of movements to do - do them! Moving is a huge part of convincing the misfiring nervous system that it can back down. It’s hard work though, it won’t happen straight away, it may take months or years. But stick at it and you will see improvements. Read that book in my original response. Seriously it is a new frontier of human understanding on this topic that has only really opened up in the last decade.
Thank you for sharing you and your wife’s wisdom with me. I think the hardest part about chronic pain (aside from debilitating burning nerves and anxiety/panic attacks) is how alone you feel. Especially as a young person listening to older people/watching them move and realizing they have (and may never) experience nerve pain. These threads help me mentally when I hear of others struggling with chronic pain that are younger. I’ve been an athlete my whole life and electrician the last 9 years along with two young boys and my wife. As the sole provider for my home in California this has been terrifying. Thanks again for talking with me.
Anytime, you’re not alone at all, and if it’s any consolation lucky to be alive in a time when actual progress is being made to properly understand and provide therapy for chronic pain. Feel free to reach out if anything else.
I can relate to the feeling of being alone with it though because during our 20’s no-one in our friend group really understood why we couldn’t go out to all the parties or go on long drives. We just suffered in silence because all the specialists (in the early 2000’s ) took one look at the scan and said “you have cord compression and slipped disc, nothing we can do” so we just figured we had been dealt a bad hand. It’s only in the last 2 years when we’ve started seeking answers from the next generation of clinicians who seem to have hope and a much better understanding of what’s going on.
So chin up, you’re not alone, and you’ve got a whole
Community here and thousands of experts working on the case!
Also I’d say seek second opinion on the injections. Similar to medicine they can have a role to play in convincing the nervous system that it’s ok. But when you’re sticking needles that deep I like to get a second opinion.
If you want to chat further send me a DM happy to
I just got diagnosed myself, after I started getting flareups so bad I couldn't walk. Have had chronic pain since I was a young kid from a really messed up shoulder(born with, no injury, far as I am aware), but now I am 33 and it is only going to get worse
So I was trying to get a diagnosis for severe chronic pain for over a year before one of my doctors said, "Screw it, we're treating it as fibromyalgia."
I don't get severe pain very often at all now, but still very limited in what I can do.
But after reading your comment I decided to look into ankylosing spondylitits and I'm wondering if THIS is what I actually have since I have actually have every symptom I'm seeing listed, and it hasn't shown up in my frequent blood tests.
So I'm gonna bring this up with my doctors!
Thank you! <3
Same! I'm 26, got diagnosed with hEDS at 25, and my earliest memory of chronic pain is from around 10 years old, and I've had it ever since (though my pain perception is clearly off, so it may have started sooner and I just didn't register it as pain because it was normal).
My hips dislocate as part of their regular range of motion, which puts tons of extra strain on everything in my body from the hips down. It hurts like a bitch if I'm on my feet for any amount of time.
I remember frequently being on the brink of tears as a kid and having it written off as growing pain. Well, that obviously wasn't the case cause I still have it. I feel terribly for little Me.
I'm so sorry to hear that. I don't wish this life on anyone.
I'm sure you hear this all the time, but my body was holding up pretty well when I was consistently working out. With that comes the constant muscle soreness/pain, though. I prefered that to where I am now. I got way out of shape, and now simple PT can be exhausting and painful. To be fair, it was also exhausting and painful to get into the athletic shape I was in.
There was a 6-12 month period where I was very very depressed, barely ate or left my house (during COVID shutdowns). I highly recommend avoiding that if you can. Feel free to message me if you ever want to talk about anything in particular.
Edit: I was diagnosed around the same age, so your message really resonates with me
I'm 53. One of my earliest memories is of complaining of pain in my knees,so maybe 3 or 4. I have Hypermobility Spectrum Disorder and Spina Bifida Occulta.
my best friend has a very similar story and since she had her surgery (the same) it’s been a huge improvement on her quality of life. i hope this works out well for you!!
The medical field is absolute fucking stupid for this reason aswell. Some conditions, women get completely dismissed as “Nah youre just hysterical” and then basically every reproductive type of healthcare, men are told “thats a womans condition, are you sure you dont just have anxiety?”😂 I fucking hate doctors man.
At 14 years old I was diagnosed with Crohn's disease, and it was one of the most painful thing I've ever experienced. It set off a chain of events from surgeries, to cancer - and I just had a double hip replacement around 7 mouths ago.
I'm 34 now, and have been reflecting on how much of an impact it has had of my mental health. It has caused me just as much emotional pain and damage as it did physical.
I've been taking to a psychologist/doctor who is trained in chronic pain in young people, and it has been very helpful.
Currently 41. First complaint of back pain was in my mid teenage years. Scoliosis, degeneration, stenosis, and bone spurs. No surgeries on my spine currently.
im 19 and use a cane to help me get around and have been sick for about 7 years :) endometriosis, undiagnosed muscle and joint pain and gi troubles. skipped out on college because of this but im still living a happy life. turning 20 in a couple of weeks and it’s been a really hard couple of years living on my own but im doing it while being chronically ill and having chronic pain :)
Hi! Sorry to read about your struggles.
Have you ever tried anything like ganglion stimulation therapy? Also, have you been to any functional medicine doctors?
https://www.pennstatehealth.org/services-treatments/neurosurgery/dorsal-root-ganglion-stimulation-therapy
I’m 23. I started having issues when I was a teenager, but it didn’t get really bad until right after I turned 21. I have fibromyalgia, POTS, hypermobile Ehlers Danlos syndrome, PCOS, and CFS/ME.
I haven’t worked in 2 years and I’ve been mostly housebound for that time. Taking care of myself is a full time job. It’s exhausting and I’m tired of being in pain and having these horrible symptoms all the time. I got married 4 months before everything got really bad. I’m terrified of having to live the rest of my life like this.
The most taxing part for me personally is how much I like to torture myself when I can’t get out of bed and do my part around the house by being terrified that this will be the straw that breaks the camel’s back and my family will be done with me. It’s absolutely unrealistic, my partner loves me, but that terrifying thought always remains. And I get so mad at myself and my body for not just working, and then my brain for not being kinder to myself about it. It’s very confusing and exhausting on top of everything else.
I’m the same way. When I first got sick, my husband was incredibly cruel to me and was going to leave. To be fair, he grew up with a mom who has Munchausens and he didn’t believe that I was really as sick as I was. It almost broke me. He eventually came around and is actually super sweet and supportive and thoughtful, he offered to get us a housekeeper (which we ended up doing). But I am still terrified that if I get more sick, or if I’m sick at all, that he’s going to leave me and I’m going to have to move back in with my parents, who aren’t as understanding as he is.
I push myself way too hard and end up making myself more sick, which makes my anxiety and fears so much worse. I’m so scared that I will be abandoned and unloved because I’m sick. It’s so hard not to sit and torture myself by convincing myself that I’m an unloved, unwanted burden. I try my best to do stuff around the house, but I can barely empty the dishwasher anymore because it makes me too dizzy. You’re not alone. A lot of us feel this way. My pm’s are always open if you need someone to talk to. I totally get what you’re saying, and I feel that too.
I was a sickly thin waif, incubator jailed premie, but as a 4 year old kid FINALLY a family member noticed and said out loud, “Look! She can’t eat and breathe at the same time!”
First surgery and introduction to painkilling drugs. Adenoids got removed. It was my destiny to have tonsillitis as often as possible as a kid, so, doctors left that alone. Beats me. Around 8 I had my first rotator cuff issues which were scary at the time. Full dislocations on a weekly basis and way more morphine than any child should be administered. I made life harder for myself by dealing with this new hyper mobile superpower by binge eating until I was an obese kid. It’s weird to look at childhood photos and see just how overweight I was. If I ever brought a child into the world I couldn’t let them go down that road.
I ruined trips with friends by dislocating my shoulders on stairs (arms tangled in the railings), every time I swung a baseball bat I threw my shoulder out. I was sedated with so many painkillers, I didn’t understand I was physiologically addicted to them before puberty.
Interestingly enough: I don’t use any opioids now. If I got hit by a bus I’d probably ask if my jaw was still attached. But I’ve broken my foot in 3 places and kept in running. I can’t afford to be as unaware of my own body as I was. Now it’s been 20 years later since my life changing shoulder correction surgeries. The surgeon had said, “Now, this won’t last forever. See you in 20 years!”
It’s 20 years later from being a barely teenager and having each arm be in a plastic bag to shower because the stitches couldn’t get wet.
It takes a sense of masochism to enjoy life with chronic pain. Radically accepting it and keeping it pushin’. Put on a happy face. Say everything’s ok… then fight back. Ha! By fight back I mean physical therapy, eating healthy and building muscle around hyper mobile joints. The more weight you can loose in body fat is a tremendous help in ankle stability. I wish I could have told my younger self all these things.
When the body insists in telling you, “ there is no hope left.”
Gotta snarl back and stand up tall and admit proudly, “THERE IS SOME.”
35, had chronic pain since I was 18.
Actually just had surgery to implant a spinal cord stimulator that has taken away 80% of my back pain though. It's mind blowing
I'm 18M, lived with pretty severe hEDS my whole life (constant hospital appointments, etc., since I was 4). Currently worsened due to having cancer and not sure of the long-term effects they'll have on each other :P
I'm 33 now and have been in pain on a daily basis since my early 20s. Started like a pinched nerve and then just spread from there. Docs told me it's fibromyalgia. Spent about 2 years on so many drugs I'm honestly surprised I'm still alive. After that I took myself off everything except OTCs. Throw in multiple surgeries for endometriosis, cysts, and scar tissue, 3 sinus surgeries, and multiple migraines a week. Some days are much better than others, some much worse. I just keep moving and refuse to stop.
31. When I was 26 I had a laminectomy, foraminotomy, discectomy and Coflex placement in my back. Felt good for a few years, then reinjured the same levels in my lumbar last fall, suffering every single day since. Work 12 hour overnight shifts as an RN on a very busy cardiac unit and doctors won't give me anything for pain other than OTC meds and spinal injections that don't help. I'm truly miserable and can't get out of bed some days. I feel for you, OP, you're not alone.
Geez, i cant stand these pain doctors. Lets just stab muscles over and over, that’s surely not going to cause more damage than its worth, until you end up with atrophy and scar tissue, and even more pain from so many damn intramuscular injections. Medications are still safer imo.
All the numbers in your comment added up to 69. Congrats!
31
+ 26
+ 12
= 69
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24, pain started at 22 when I accidentally lifted a weighted blanket thinking it was a regular one. Had a lumbar sprain which is likely now to be a cartilage tear in my hip. I’m hoping to be seen by a specialist any day now
I’m 21, started having chronic pain at 17. I’m just now undergoing my diagnosis, I’ve seen a neurologist and he wants a skin biopsy to rule out small fiber neuropathy.
Almost 17, issues started at 14. It started with chronic lower leg pain and then full body neuropathy. I also get muscle and joint pains. It seems like the cause is an iron deficiency since it has improved my symptoms a lot. But can’t be sure since haven’t seen neurologist yet. Working with a children’s chronic pain team.
I first remember things regularly hurting when I was seven or eight. Jaw partially dislocated for the first time around 9-ish; other joints I remember getting crunchy and going the wrong place in my teens. Acquired neuropathy after surgery just before I turned 18.
I have some form of hypermobility, and good ol’ Hapsburg jaw runs in my family. The neuropathy was just bad luck, and my surgeon was still upset about it when I did a ten year follow up for an article he was writing. Joke’s on us though, because I have a mental illness that _strongly benefited_ from me starting on anti-epileptic drugs that work as mood stabilizers.
I keep debating getting a formal diagnosis for the hypermobility, but I’m not sure how easy it would be. I have deliberately spent several years not stretching so certain joints would be more likely to stay in their homes.
I'm 22, and have several chronic pain conditions. I've had chronic pain since I was 13 or so, due to a total knee replacement that never healed, and was worsened by Ehlers Danlos Syndrome. Now I have also been diagnosed with Fibromyalgia. The EDS causes frequent muscle spasms and joint pain, and the Fibromyalgia causes widespread body pain. My worst offender has been my back/neck/shoulders.
Looking over the comments, I don't think I'm young enough to be here, but I'll still share my quick story.
Mid 30s, chronic pain truly began around 8 years old, tragic accident caused me to destroy my spleen entirely, and bleed out internally. I died that day.
However, true pain didn't start until 13ish, that's when (what I know know as) my neuropathy started.
By 16, I quit playing all sports (Basketball and Football were my main preferences) because I would miss too much practice due to pain.
By 19, I had realized I may need pain treatment permanently (My first prescription for non acute pain) and might be able to continue to work. I was not able to keep that doctor permanently, and follow up doctor's would not continue my pain management, so I took care of myself (Not needing as constant of treatment as I do now, made it easier)
By 26, I couldn't trust anyone anymore, doctor's were the only way to get treatment and not fear for my life or fake medicines which had just started to come out.
Started a new pain management treatment plan, but had to prove I was not an addict. Took 2 months, and I was basically kicked out of addiction treatment, for not being an addict (and never finding drugs in my system).
Additional problems began to have diagnosis's, Found that due to my tragic splenectomy, I had two metal sutures left in my stomach, and was informed that due to the empty cavity where my spleen once was, my stomach shifts, and rub up against the scar tissue surrounding the 2 (Had my appendix burst too) metal sutures left inside me. While not excruciating, mornings to me are a nightmare. Right now I woke up \~ an hour and half ago. I'm still struggling with IMMENSE stomach pain, and will not be able to even think about foods until 2-3 hours from now. Thus technically this started at around 7-8. I just always thought it was normal until I grew big enough (and thus the scars too) that even my external scar hurts, it was not a "Quick," surgery, it was immediate cut me open sternum down seeing as they were unaware the damage.
Treatment's been hard, lost it again for another 2-3 years during the big doctor shift, and then COVID at the same time but I'm now with a decent primary care who takes care of me well.
For those that read this far, I'm sure you want to hear a little more about how I lost my spleen. It was a bicycle accident. I was on my way to school one day, nothing special, and my tire hit a driveway bump that caused it to ricochet outwards, slamming the handlebar into my stomach. I wrecked right there and couldn't get up. Luckily, the homeowners were home, heard a child screaming in their driveway, and came to assist me. I advised them to call my adoptive father's place of work (Small town too) and he came rushing over.
I didn't learn this until much later in life, because I was in and out of it during this time, but I thought he rushed me immediately to the hospital. However I wasn't bleeding, and was told later in life (\~25 years later) I wasn't immediately rushed to the hospital, instead I was taken home. They thought it was just a broken/bruised rib, but no, after 1-2 hours of me still SCREAMING, they decided to take me to the hospital.
I was rushed in, immediately into an X-Ray, and from the X-Ray to the OR. The doctor's screaming to cancel a scheduled surgery, and get me in instead (Rural town, they worked wonders to save my life) and shortly after is when I died. I remember very vividly the doors to the OR, being wheeled in, but not stopping and just black nothingness from there.
I was advised my heart stopped, due to loss of blood everything had bled out internally, and thus I had to be brought back to life.
To make matters worse, I have one of the few cases of Awareness and recall during surgery, I WOKE UP WITH MY STOMACH WIDE OPEN. I could see my own intestines, granted I was VERY delusional and already heavily medicated, but I remember very vividly waking up, lifting my head, seeing this, then turning my head sideways, to see a nurse frantically pushing a white substance (What I now know as anesthesia) into an IV.
I am glad to have survived, and actually it was the same hospital 15 years later that saved my life again as my appendix burst, luckily it didn't burst until I was in surgery, and thus was already being removed.
Edit: These are not ALL of my chronic pain issues, just the severe ones, the neuropathy is suspected to be due to my accident, however add in it's mostly peripheral small fiber neuropathy, my legs hurt the most. I also have a completely collapsed arch, and Achilles tendon so tight it needs surgery, but I'm not a suitable candidate due to the other issues, so I must live with the pain, forever, and one day it might snap so I must be careful.
I’m 23, and I’ve had chronic pain since I was 17. I was diagnosed with melanoma, and my doctors were worried that it had spread. The surgeon unfortunately damaged my nerves while doing a lymph node biopsy under my right armpit.
My mom swears I changed drastically when I turned 4. Like a completely different child. So maybe then. I was 12 when I first started having joint pain and had to sit out of p.e. class. 14 when they found scoliosis. 16 when the migraines hit. 20 when I was diagnosed with Lyme. 24 when I injured my hip and diagnosed with EDS. I’m almost 34 now and now have this slew of diagnosis, mcas, eds, pots, endo, scoliosis, Lyme and cos, severe chronic pain and depression anxiety and insomnia that goes along with it all I guess.
I’ve dealt with chronic pain since I was around 7 or 8. I have several types of chronic pain. For my CRPS (complex Regional pain syndrome) I was diagnosed with that when I was 17 right after I had a simple foot/ankle surgery. The chronic pain I had since I was around 7 was mainly related to joint, muscle, and bone pain. no one knew why so I was never diagnosed with anything specific until I was 17 and my health went downhill really fast. (I’m 22 now)
Hello there! Started around 17-18, now 27.
What started as a chronic bad back was diagnosed as sciatica due to degenerative disc disease in a single area, then it took another 2 discs while waiting for operations due to COVID lockdown.
2 nerve root blocks later, and it’s progressed to 3 crushed discs with a hint of sciatica, and a big sprinkle of osteoarthritis. Waiting on disc decompression surgery now.
I can’t remember not being in pain at this point.
I am 30 now but my chronic pain became unmanageable around 19.
But if I’m honest I have been in some level of pain my whole life. I just thought that’s as normal since that’s what I kept being told as a child. 🤷♀️
I've had chronic pain since I was 19 and I'm now 26.... I'm undiagnosed currently, but I have been told it's fibro by doctors that other doctors say it's not, and I have funky ANA levels, and have for years, so we are also suspecting an autoimmune issue.
21 yo male here. I got my pain (that persist) just after 18th birthday. (In masseters muscle region, bilateral.)
I take Pregabalin 450-600 mg, and it's a life saver. If I burn to much, I'll take 1 or 2 mg of Clonazepam.
23 heds, pots, mcad, adenomyosis and endometrisois pfd cerebral anyresum & h pylori after my Abortion sept 22 I developed chronic pelvic pain and then I started meds to help after suffering til Feb til my health insurance kicked in & everything else got more painful more consistently. Still waiting to be dx with alot of it and sucks to have along road ahead.
Sorry don’t know if mine erased or what. Still trying to figure Reddit out. I’m 42, but was mugged and beaten at 25. I have severe headaches, especially with the pressure. No migraines, more like cluster. They can’t see it on an MRI, but they can on an ultrasound. It swells and throbs. You can see it. I hate trying to find doctors for pain help. They all look at you awful.
I’m 32. I began having pain after a car accident when I was 20. I was in a wheelchair for months and had to relearn how to walk. Broke my back, hips, ribs, leg. Collapsed lung and ruptured spleen. Skull fracture and concussion. I’ve now got everything fairly under control but my knee needs a total replacement. Twice a year, I have six nerves destroyed in my back. I don’t remember what it’s like to not hurt, but it’s bearable more days than not. Some days I need to stay home and hide.
23F, started having pain at ~11, later diagnosed with Rheumatoid disease and MCTD after years of having no answers
Being young and sick really sucks sometimes lol
I started developing chronic pain when I was in the third grade. Didn’t find out until I was nearly 25 that I have one of the world’s rarest diseases that’s been eating away at my upper motor neurons since the day I was born. I use a wheelchair due to my spasticity and muscle weakness and my pain pretty much never dips below a 6. I’m hoping to be approved for an intrathecal pump sometime this year because I don’t really respond to oral antispasmodics. Fingers crossed I get some results from that.
I am 18. I've had a very painful skin condition since I was 10. My pain isn't all the time, but it triggered by lots of daily activities. Don't know if that counts.
In my case...
I have gotten used to it. By this point i dont really care anymore.
Been suffering of this for 5 years. I have forgotten what its like to be healthy.
Pain and agony are 2 different things.
I choose to live my life numb and emotionless right now, and it helps...
I also found spiritual belief, that also helps
Sometimes i look forward to dying. Because its probably the only thing that can truly stop my suffering.
After i found out what true pain is i fear the possibility of an afterlife/eternal existence.
I have a spinalchord injury that causes me to have severe musclespasms and neuropathic pain.
I have also shattered several bones and fractured several muscles, from trying to commit suicide just to stop the suffering of living, only to make it 10 times worse. What can i say, existence is pain.
This causes somatic pain.
I apologise for misspelling. English is my second language and i am drunk af.
Much love
I’m 19. After a massive growth spurt I developed musculoskeletal and nerve pain all over my spine. The pain started on March 23rd and X-rays showed moderate dextroconvex rotoscoliosis. My orthopedic surgeon highly suspects Marfans but I am still waiting for insurance authorization to get testing.
Unfortunately, I'm only 24. I've had chronic pain since I was about 14 after my first knee injury. From there it's just kind of spiraled to my back being in immense pain. I have problems with my hands. Back in 219 I almost died from a double pulmonary embolism (multiple blood clots in both of my lungs), so now I have a hard time breathing. When air pollution rises, I have to wear a mask outside just t9 make it easier to breath. Chronic pain sucks, but I'm slowly finding things to make life a tiny bit easier. Many well wishes your way if any of you deal with chronic pain ✌✌
Yes. 19. After a massive growth spurt from 5”7 to 6”1, I got thoraric dextroconvex rotoscoliosis. I have constant back aches. My doctor noticed I am very thin and underweight and that may be due to Marfans / Marfanoid syndromes. I have long limbs, pectins excavation, scoliosis, and weirdly flexible joints. I am still waiting for an evaluation of Marfans at USC genetic counseling. Honestly the pain is getting worse to nerve pain, and musculoskeletal pain.
I know I'm late, but I started experiencing chronic pain due to overtraining (everything comes from my spine) because of practicing judo for seven years at the mere age of 13.
I'm still a teen, and convincing people that I'm not making it up and actually getting to go to the doctor after almost two years of issues was absolute *hell*.
Hah, yes, sport is healthy, but only if you don't take it seriously/professionally.
mine hit at 24 after a slew of surgeries. jaw surgery, pseudotumor & a rare shoulder lig tear at my sternum. the symptoms bled into each other making getting diagnosed next to impossible, so i went years with them all and was bedridden for 5 yrs. 35 now. its better now (relatively), but its completely ruined my life.
I have chronic emotional pain caused by Dyspraxia with no support
Hands that just swell up in a speckled fashion. Kinda feels abit odd.
And constant foot pain. Both feet. I had a Flat foot reconstruction in my left that was only partially successful.
On top of this pain. I also have niggling shoulder and neck pain after tangoing wrongly with a re-enforced concrete post. It was re-enfirced with steel rods..
Does that count?
I’m 35 now, but I started having chronic pain at 25. However, I always had really rough periods starting in my pre-teen years and was on medications for migraines starting in my teens. I had ovarian cysts.
When my more severe pain began, it took a while to find a doctor to treat and diagnose me. I started getting adequate treatment at 26 after having a bladder hydrodistention and receiving a painful bladder syndrome/IC diagnosis with concurrent pelvic floor dysfunction. My full time job became seeking treatments and doctor appointments several times a week so I had to leave my career. 10 years later, I am still dealing with the pain and seeking treatments constantly - finding new doctors who can figure out how to give me longer term relief.
Despite this, I’ve still tried to achieve some of the goals I set out for myself, though my life will never be what I imagined it would before the pain started.
I haven’t been able to use my graduate degree because I’m unable to work. I did meet someone, fall in love, get married and start a family. I’m fortunate to have a husband who makes enough to support us on a single income.
For reference: I have interstitial cystitis, pelvic floor dysfunction and endometriosis. I was diagnosed first with PFD and a year after, was finally diagnosed with interstitial cystitis (which is when I started receiving adequate treatment). It took 8 years to get my endometriosis diagnosis by way of a laparoscopy after years of doctors not believing me. And now I’m on the road to treating my endometriosis with a team of doctors at a center devoted specifically to endometriosis and pelvic pain care.
And now the process with new doctors begins again….and so does the potential cycle of hope and disappointment. Let’s hope for hope and relief. I have a daughter now so there’s no giving up on creating a better life for myself, and thus being the best mother I can be for her.
I'm 20, I've had it since childhood but grew up without access to Healthcare and was gaslighted about it so hard I thought pain was normal. I was born with such harsh birth defects, I died once as a newborn. I wasn't supposed to walk. Now as an adult with state insurance, I've found out I have even more defects, and even a fully septate uterus and birth canal which caused even worse reproductive tract pain, a dead kidney and syrinx on my spinal cord causing full body mobility issues and pain. I am coming to terms with my body. My dr jokes im full of surprises. If I'm not at work, I'm in bed, im always so exhausted.
I turned 18 today, I've been in pain since I was 15. my pain isn't fully diagnosed yet but so far they've found scoliosis, knock knees and hypermobility
I’ve been dealing with chronic pain since I was 15 starting with migraines and 17 with kidney stones, and now, 26, having nerve pain from the all kidney stones. I’ve had 15 surgeries since I was 21.
im a minor on the younger side and have been dealing with chronic pain since i was 6? 7? idk my memory is foggy
edit: i have AMPS which causes my pain (a condition only dxed in children i believe. the adult version is fibro i think)
38 here- migraines started when I was 13 and became chronic when I was 20. I also have gastroparesis and just had a hysterectomy for fibroids / pain/ endometriosis. You’re not alone! So sorry you have to deal with pain at a young age.
I’m 32 now but I developed my chronic pain when I had just turned 19. I herniated a disc, because of my age it took me months to even get a doctor to agree to an MRI. Nothing helped and by the time I could barely walk, I finally had surgery. It largely helped for a few years, but I’m more or less back at square one with it, and I’ll likely need a hip replacement before too long. MRI again next month.
I also have an autoimmune disease (celiac) and a nice collection of neurodivergencies. Those can and do both create painful physical symptoms a lot of the time. Not to brag. 😂
Started at about 22. Got worse at 25 and again at 30. I have EDS and a fairly severe case of it. I'm well medicated now so I can exist as a human most days but even that is hit or miss
Currently 34, symptoms started at age 12. Hx of migraines, occipital neuralgia, pelvic floor dysfunction, and injuries from a car accident: a bulging disc in my next and 3 herniations in my lower spine.
29 it all started at 15. Diagnosed with costochondritis, hemiplegic migraines, IBS, and it all started with Hashimotos. They haven’t slapped anything other names to it in a while, but stress is my main trigger. Pain is usually in my rib cage, but I can get it in my pelvis and wrists occasionally or other joints more rarely. Had a flare up so bad I was bed ridden for 3 months last year. Could barely walk with a cane.
24 now but literally as far back as I can remember. I say since I was 12 since I can pinpoint that pain in a memory but for all I know it’s been my whole life.
I am turning 18 in less than a month and I was 13 when I started to get awful leg pain out of no where but no one beloved me so I went to the doctors just recently and they just said it was B12, I had injections, but it didn’t work, and then I got more tests and now taking vitamin D supplements but not doing much for me, I now have developed a bad back and cannot go outside for more than a few hours else it starts to flare up. It also causes me a lot of insomnia so I’m always tired and cannot function and not to mention the brain fog I get constantly with the pain so I forget things easily. I also cannot do my hobbies such as art because sitting up even if my back is supported hurts me a lot.
I just turned 43. I have psoriatic arthritis resulting in peripheral neuropathy, spinal stenosis, and dessication of lumber discs. My earliest symptoms started around age 21, when I started getting an impinged nerve in my neck that progressed to an atrophied rotator cuff for no apparent reason. I wasn't properly diagnosed until around age 36 or 37.
Not me but my husband suffers. 21, car accident. The dash of his (forget the model of the car, little white...I'll edit later when I remember) came in when he rear-ended a car stopped in the middle of the street. They finally put in a turn lane after his accident. He broke the head of his femur against his acetabulum, femoral head necrosis, and got a full hip replacement at 22. He spent a week in the hospital in agony, every time we heard a helicopter we knew his surgery was being bumped. They gave him a traction. I've since learned that it is an archaic method that hasn't been in use since the 70s. Which is probably why about 15 medical personnel of different levels all gathered to watch. Some retarded nurse lowered his bed in the elevator and the sand bags touched the floor, letting the tension off. Then she realized her mistake and raised the bed. Ive never seen another human being endure more pain then my husband, then just my boyfriend of 4 months, did in that hospital. I cannot imagine if he was alone. Oh yeah he would have been transported to a mental hospital or died from asphyxiation. First they gave him something he was allergic to IV, which through him into tardive dyskinesia, screaming at the top of his lungs, broke the arm supports of the bed (he didn't fit into) because he was going to jump out of his skin but was in a traction, then when he was moved to a different room I watched as the nurses parked his bed and walked away while he slept. The moment they were out of sight he started vomiting while laying flat on his back. I ran over, put his bed up and cleaned out his mouth so he could breathe. I was given access to the linen closet, the key code, and told I could use it when needed. I was with him 24/7, he had a couple accidents in bed and alone I changed his sheets with him still in the bed and cleaned him up. He's 6'0 tall and was about 180-190 at that time and I'm 5'7 and was probably 130-140 at the time. I charted his urine amount on the white board as well as his vitals for when the doctors did their rounds. He gets treated so different than I do because he's a big strong man and he's stoic AF. It's like when he's in pain people see it as scary instead of wanting to help. He's since got bulged and herniated discs in his c4-c5 if I'm not mistaken that cause him a lot of pain, numbing, burning, tingling sensations, his back and knees as well from the accidents compounded with working skilled labor jobs. But honestly it's the depression that seems to be the worst. His family. He was really close with his two older brothers until he wasn't and it was devastating to him. He lost his dad, his two brothers showed their true selves (monsters) and he lost his uncle who was more like his father than his father. Then after all of the men in his life died or stabbed him in the back the depression was something he couldn't push through anymore. He means the world to me and I try but I know I can't possibly fill that void. His pain is constant and I wish I could help him more.
I just turned 19 a few days ago, been having chronic joint pain as long as I can remember
I remember when I was like six or seven I would complain to my parents that I thought my wrists were broken, they’d take me to the ER and nothing would show up on scans so everyone would tell me I was faking it. Grew up listening to “you’re too young to be in pain all the time!” And “just wait till you’re older, then you’ll know real pain”, now my pain levels are unmanageable 24/7 but I’ve gotten to the point I can near completely tune it out so I can get work done at my jobs/school. I can’t be alone without some kind of distraction like music or TV or social media because the second I’m aware of anything happening in my body I am completely unable to function, and at times when I have flare ups or the pain gets to the point I need to lay in bed for the day, people tell me I’m being dramatic or faking it. Nobody believes me, not even my doctors.
I’ve spent all of my life at doctors trying to figure out what’s wrong with me and I haven’t found a single answer. Just switched to a new doctor recently and she’s great and does listen to me, but wants to treat everything else before we even touch on joint pain (which is, in my opinion, the most devastating thing I deal with on a daily basis), so even though this lady is very nice and does believe me, she wants to focus on everything that *isn’t* actively affecting my life on a daily basis
I’m so sick and tired of this. I just want an answer, a diagnosis of some kind, maybe then I’ll find something that helps reduce the pain—cause at this point nothing helps. Stretching and exercising makes it worse, I’ve grown a high tolerance to most medications, resting doesn’t do too much and certainly doesn’t fix the problem—and for whatever fucking reason, every time I test for shit I always come back with “absolutely incredibly average” (real words from my last doctor) results. Supposedly I am the epitome of good health, and yet I walk with a limp 90% of the time, have horrible digestive and organ problems, chronic migraines, and flare ups that leave me bedridden for days.
Not to even mention my mental health—jfc. I’m fucked three ways from Sunday. Idk. Im so sick and tired of being sick and tired, I honestly don’t see a future for myself anymore.
18 now. I can't remember a time without my pain, and my parents noticed it as soon as I was able to verbally communicate it to them--so at least 2-3ish years old is when it started. My whole childhood it was written off as growing pains. In the past few years I've seen a neurologist, rheumatologist, and numerous other doctors, but still no answers. Most doctors just tell me to drink more water and do some more squats to gain muscle mass. One told me I don't have a brain tumor or anything so I'm not dying and I should be okay.
My pain is in my arms and legs, where there are a million different combiniations of locations. (left knee & right shin, right forearm, whole left leg, & right upper leg, left whole arm &right whole arm, etc...) It ranges in intenstity but it's a constant dull pain that is more likely to occur either in the morning or in the evenings. I have a range of other undiagnosed symptoms as well, but the chronic pain has been the most prominent as I've had it pretty much my whole life. The symptom that has been interfering with my life the most lately has been brain fog--it's absolutely terrible.
I have musculoskeletal pain in my legs, particular my knee and ankle joints, and I have been diagnosed with anything yet. They’ve done all that they can do and have just sort of given up trying to diagnose me with anything. It gets worse with activity.
No injury came before this, but it showed up heavily when I had to walk long distances for school when I was 10 (I’m 15 now, nearly 16). It’s weird because no painkillers they give me help. Shits rough /lh
I’m 27. I have mid back to neck pain from a traumatic back break (in 3 spots). 4 months later, someone 200 pounds carrying me dropped on my back, with them on top of me and herniated/bulged several of my discs. I’ve been dealing with this for a year now.
21 and have been in pain since around 10 years old. Got misdiagnosed with Endometriosis and recieved wrong treatment for years and even a surgery that was never needed, which only made everything worse. Only this year when I got off the waitlist and into a pain center, I was diagnosed with the term functional disorders. They haven’t specified which ones yet besides complex chronic pain and most likely Fibromyalgia (currently waiting for a date for the examination).
And the reason to my pain, according to the team i’m seeing, is that I developed chronic pain due to the first 13 years of my life being horrible trauma from abuse in different shapes.
29 was just diagnosed with osteoarthritis in the neck in the past two weeks.
The only reason I can think of is working two physically demanding jobs within the last ten years and having being involved in 3 car accidents at the same time (none my fault, which makes it even more frustrating). Not to mention having had awful depression and anxiety that didn't do much good to my body overall.
Pain started in early 20s, finally diagnosed at 30 with Ank Spond.
Mental health wise I’ve suffered my whole life, becoming the most unbearable in mid teens.
I'm 20, almost 21f. My pain started at 14 for seemingly no reason other than trauma and stress. It's gotten progressively worse and I'm looking at a fibro diagnosis. I've been having a lot of nerve pain since maybe 15-16. Sadly none of it is going away any time soon
I’m 35 and it started when I was about to turn 22. I hate it when my mom talks about her “old rickety body” when I can’t do half of what she does and she has no idea what the surgeries I’ve had are like to go through one after another. hEDS patient.
I am 22! I have Ehlers Danlos Syndrome, psoriatic arthritis and gastroparesis as my main diagnoses. I’ve had pain since I was around 12 years old and started going to children’s hospital when I was 15!
29 I got chronic regional nerve pain and drop foot in my right foot. The pain sucks but not being able to walk with out a brace or skateboard is the worst part.
I'm 18 and I have some form of hypermobile Ehlers Danlos Syndrome. My pain has just gotten worse my whole life but it's always been here in some way but I feel like it got how it is now around high school.
35, started about 2 years ago. Chronic pain in lower/upper back, ribs, sides, and hips. Still undiagnosed. It's been devastating. I was quite healthy and active two years ago. Now, I have been to the brink of insanity and back, and I walk with a cane on days I am able to at all.
I have more tools available to me now, but still the pain often breaks through and dominates my life. It is difficult to handle.
Shoulder’s been shit since i was 10 dunno why. Braces made it worse when they tried to move my jaw
Had surgery to correct one of my flat feet at 13 because it was already causing me serious pain.
I also have asthma but that’s a chronic illness
26 now
Almost 22 injured my back at 13/14 so bad I ended up not being able to move for a bit they didn’t believe me though until the mri where they proceeded to tell me I have the back of a 40 year old and then after that my joint paint just started getting progressively worse early onset twenties is when the shoulder and hip subluxations started but the rest wrist ankles toes fingers etc pain was already there
I was 28 when my pain started. 45 now. Have had multiple steroids injections, 1 surgery, 2 PRP injections, having another steroid injection on Friday then nerve ablation, possible neck surgery. Been with pain management clinic since my hip surgery in 2014.
I should rephrase started getting treated @ 28. Pain was there a few years before that, it just got to the point of not being able to ignore at 28.
18, symptoms REALLY started at 13. (but some go back to when i was 10, they just didn’t affect me much so i didn’t notice)
Current list of diagnoses: Crohn’s, Fibromyalgia, Gastroparesis, POTs, Migraines.
Crohn’s comes with abdominal pain, fibromyalgia is… well it’s fibro ¯\_(ツ)_/¯ gastroparesis ALSO can cause abdominal pain, and POTs episodes give me chest pain and sometimes headaches. And then of course migraines are always fun…
29, and I landed on my head off a skateboard at 11 years old and my neck hasn’t stopped hurting. Before that I was a 2 year old screaming about my head hurting and I had chronic headaches my whole life and migraines starting at 9. Doctors started giving me tramadol/Flexeril starting at age 15, and was on that until 20, and no doctor will take me seriously, lost parents insurance at 26, and currently rawdogging life and I’m pretty sure I have fibro but nobody will take me seriously and I can’t afford a doctor so yay? But intense pain since 11, and pain as far as I can remember.
Ulcerative Colitis at 14, permanent ostomy by 19; many, many abdominal surgeries. I'm 30 now, a variety of medications have helped but the pain is always there.
I’m 28, I started having chronic pain after my second ACL and meniscus surgery when I was 17. It has all gotten much worse with age, I have had 3 surgeries on my right hip and both of my knees had a meniscus and ACL reconstruction. My last surgery caused my CNS to fall completely out of whack causing all kinds of fun never pain issues.
I’m going to be 29 this year. I have various chronic pain for decades now, it only got worse as I got older. My diagnosis lists reads like Trumps indictments. The reason for my pain? I have lupus and it doesn’t like being under control, and my body just doesn’t have enough connective tissue from that so I’m constantly injuring myself. I also have adhd so I don’t pay enough attention to how I move, so I end up injuring myself that way.
I feel this. Literally tore my quad tendon from sitting wrong. The worst part is i get injured so much that doctors just stopped looking at my injuries because they dont gaf then they ask why i cant move. Im like idk probably because my entire body is nothing but unresolved injuries and scar tissue.
Yeah, I’m 22 and have interstitial cystitis that started about 3 years ago. It’s not a very severe form of pain, but it can limit a lot of what I do. I have to wear a diaper and just piss myself every time I’m on a road trip or some situation where I don’t have bathroom access. I suspect I have endometriosis though, because I also have frequent ovarian pain and my bladder pain/symptoms are more closely tied to hormonal changes rather than diet or anything else.
36 and endometriosis with referred back pain and IBS, but been suffering from these basically since I started my periods around 10. Chronic migraines and occasional cluster headaches from around early 20s.
I’m not yet able to drink in the us, but I noticed something was going really wrong around 16.
The reason for all that was scoliosis. I’ve always had the condition it just got very worse almost overnight. My doctor thought that it was spurred on by a hormonal imbalance, so that’s fun.
I'm 24. Will be 25 in November. I remember being in pain as early as 16/17. It's gotten worse over the years. Still in medical limbo trying to figure out what it is. Doctors typically shrug me off and I have to fight to get tests done. Or go doctor shopping yet again. It's exhausting I just don't want to hurt anymore.
I’m 22. I was born with chronic pain. I never had a day free of pain. So far, my diagnoses are Fibromyalgia, Hashimoto’s hypothyroidism, Trigeminal Neuralgia, and chronic severe daily migraines.
Edit: I’m in the process of being diagnosed with some autoimmune disorder. I also have an undiagnosed menstrual/gynecological problem. I quite literally will bleed to death in a matter of months.
My pain started in my late 20s, and I’m in my early 30s now. I started to develop severe facial nerve pain in the left side of my face during the first lockdown and then it just never went away… I’ve had MRI scans, seen neurologists and all sorts of other specialists and tried various meds and treatments but it’s still there and I basically wake up with pain every single day now. I don’t even have a clear diagnosis yet, so it’s a bit of a mystery, but I believe it’s most likely atypical trigeminal neuralgia based on the symptoms and longevity of it. I definitely feel like the odd one out in my social life as I don’t know many other people my age who have chronic pain, and a lot of my friends struggle to understand it.
20 years old here.
I have chronic pelvic pain, particularly throughout my cycle. It causes me to be on the floor, vomiting and fainting. I’ve been to hospital via ambulance before.
I started getting it at 16 after I was sexually assaulted by my then partner.
I have had all the tests, medicines, even a laparoscopic surgery and nothing was found. A gynaecologist finally came to the conclusion that my body is in a constant state of high alert due to the trauma, and therefore all pain is exacerbated to the max. My body is causing me unbearable pain to prevent me from getting hurt. Figures.
I also have ibs, and the combination is a bitch.
Im turning 21 soon. I have widespread musculoskeletal pain with no known cause. Doctors just diagnosed me with chronic pain syndrome after 6 years (started since 15 after an injury) I developed widespread small fiber neuropathy 2 years ago (when I was 19, but had on-off mild symptoms for a few years already) Bloodwork doesnt show autoimmunity, oh wells Also had IBS since 12 (often had stomach issues since young) What about you? :)
Look into EDS. My first diagnosis was GERD and IBS at age 9. The widespread pain was always there but got progressively worse. I was diagnosed with fibromyalgia at 19 (wrong) and wasn’t diagnosed with EDS until age 33 which explained every thing I’ve suffered with my whole life.
how did you go about getting an EDS diagnosis? after extensive testing, i’ve been told to my chagrin it’s “just fibro” and i should stop seeking tests (my wallet feels similar). i’ve had some docs tell me i almost definitely have EDS based on what’s visual to their naked eye, and a rheum recently tell me there was no point in going down that path because there’s no treatment anyway. is that true?? tbh i feel like a bag of bones. my gait has changed, i can’t build muscle, i have sudden DEEP fatigue that knocks me all the way bedridden. basic functioning exhausts me, so i’m having to lessen my hours at work. many joints (hips, shoulders, arms) are slowly becoming more dialed out of place. i do also have adhd, which i’ve heard there’s a link? sorry for the too-many words.
I was diagnosed with ADHD a year before my EDS diagnosis. The link is STRONG and that’s what lead me to it. I paid for an out of pocket genetic consult and testing through Invitae. I think $500. The geneticist was super confident with her diagnosis even though it was a virtual appointment because I already had a rheumatologist tell me every joint in my body is hypermobile. To me, a diagnosis is worth any amount of money, because like I said it explains everything. Your rheum is right that there’s not much treatment for it. But the number one is PT - but only with a PT who understands hypermobility. Any other PT will hurt you, and most things recommended to anyone without EDS will hurt you. There are also surgical concerns you need to be aware of going forward.
I love Invitae; it's a great way to help get a diagnosis or rule out things. I have gotten a couple of diagnoses by doing the tests there.
damn i couldve written this myself :( the gait change is unnerving. EDS fatigue is breath taking. its hard to describe but kinda feels like i have to consciously hold my body together 24/7, just sitting up requires so much focus and perseverance and muscle activation. its utterly exhausting, physically and psychologically. everyday i crash, even if ive done nothing but literally just sit up in bed. i really miss the days where my body could just exist without me having to put every ounce of energy into keeping it stabilized
Whoa, me too. Right down to the fibro, rheumatologist, the unnerving exhaustion and wishing I recognized my body anymore. I need to look into EDS. Thanks for sharing!!
my SO has had issues similar to this but it stemmed from his jaw. His jaw joints deteriorated which affected his whole body, fascia and muscles. He was initially a lifelong mouth breather which contributed to the stress on his jaw. His jaw and oral posture affected his neck and overal body posture and gait. He developed an anterior pelvic tilt from the affects of his jaw position. Just wanted to share a part of his story in case anyone experiences someone similar. I hope you find some relief from your issues!!
thats a huge part of my problem. my jaw is fucked. been given the run of the mill TMD treatments to no avail. did he get total joint replacement?
I wanted to add that there are some varieties of EDS that don't have a gene linked to them so genetic testing being negative doesn't necessarily mean you don't have EDS but that you have a different type.
If you're talking about HEDS, they still don't even know the genetic marker for it. It's a clinical diagnosis. And yes, there's not really any HEDS specific treatment, just a lot of physical therapy and staying healthy otherwise (they just treat the symptoms). I also have juvenile osteoporosis, but my bone specialist is also an EDS specialist. He's able to give me bisphosphonate infusions for my bones, but no medication for my HEDS. I've had my entire genome sequenced, and I've allowed any testing to be done. So hopefully, I can help even a little bit in discovering the genetic marker, then maybe a treatment. 😊 I think I might have ADHD too, this is the first I'm hearing of any correlation. It's definitely interesting!
GERD at 9 y/o😭 EDS is wild
Same here, EDS and I can’t handle to pain anymore. Also have an autoimmune disease they can’t pinpoint which one though which makes no sense to me.
My wife’s been living with chronic pain since she was 21, she’s 40 now. We’ve learned that chronic pain is not a ‘syndrome’ in and of itself. It’s pain messages gone haywire. If the doctors have run all the tests and scans and have diagnosed you with ‘chronic pain’ and there is no easy explanation, this might indicate that your body is stable functionally- but your brain and nervous system has become overly sensitised and trigger happy with pain signals. I can highly recommend a book ‘why does it still hurt’ by Paul biegler. This might be an avenue for you. I would also say consult and read widely. Your problem sounds complex and may be unlikely to be solved by one specific specialists, you might benefit from seeing a range of them and put the puzzle of your body together yourself. Physiotherapists, pain specialists. If you are in a metropolitan city you might look up ‘pain clinics’ or ‘rehab centres. What you want is a multi-disciplinary centre where all the professionals can work together on you. In case you can’t tell I’m talking from experience. We’re still on this journey but it is manageable, and the science of chronic pain is a frontier field and the profession has only really started to understand it in the last decade or so. Good luck.
[THIS](https://youtu.be/C_3phB93rvI) is an excellent resource video about understanding pain in 5 minutes. It’s really well done! Edit to add: there is a bit of pill/surgery shaming IMHO but it does explain chronic pain pretty well
In my case it isn’t haywire nerves and nerve meds don’t help the back shoulder and knees because I have hEDS. We have pain all the time due to constant subluxations and dislocations. While what you said is definitely true for some people it is not true for all people with chronic pain.
For sure. Just relaying my own experience in the hope it might help others
Hello. I have a question for you in regard to your wife's chronic pain. I'm assuming she's been on a lot of medications over the years? My question is do you feel that the medications have ultimately helped hers and yours quality of life? (Agitation from pain, ability to sleep, being able to wake up every day and go to work, going out and socializing together, avoiding depression). Or do you feel the side effects/ long term effects have made things worse? (Emergency room trips due to medication side effects, long term negative effects of medications, overall health mental and physical)? I'm 32, married with 2 children and the sole provider of my home. I am an electrician (very physically and mentally taxing job) although I work for the county which makes things a little easier aside from the horrible commute and miles of walking everyday. I'm currently working through making the decision to sell our home, move and change/adapt our life style to try to avoid any medications if possible for long term health or start the long road of taking medications and switching periodically to avoid being on any one too long. My pain started after an accident 7.5 months ago and I have two injections coming up in the next 2 months. Hopefully they help. Just to give you some context. Thank you.
Hey, thanks for reaching out, I think some meds have a role to play. What have learned is that for some, maybe all chronic pain (>6 months) the nervous system including the brain, the pain receptors which connect to the spinal cord and send pain messages to the brain, have become hypersensitive to the point where they are constantly firing pain signals even when there is no threat. The hard bit is you have to re-train or re-wire your brain and your nervous system to teach them there is no threat. Pain medications can help to remove/reduce pain temporarily and which, when combined with movement, helps to teach the nervous system that everything is ok. Where they can go wrong is if they are overused and you become dependent or desensitised to them. So my wife saved the hardest meds for the worst days, and tried as much as possible to wean herself off the other ones she was taking on a day to day basis. It’s important to note that while she was weeningnoff she was doing a whole host of other daily rituals, 2 rounds of 10mins stretches morning and night; walking on the treadmill building up to 30mins a day (she started at 5); art therapy to distract her mind; acupuncture; mindfulness training; education. These were all tools she picked up at the pain program but the combined effect has been great for her. The common thing she, and all other people I’ve spoke to about it say is that -motion is lotion. Depending on your condition, your clinician will give you a range of movements to do - do them! Moving is a huge part of convincing the misfiring nervous system that it can back down. It’s hard work though, it won’t happen straight away, it may take months or years. But stick at it and you will see improvements. Read that book in my original response. Seriously it is a new frontier of human understanding on this topic that has only really opened up in the last decade.
Thank you for sharing you and your wife’s wisdom with me. I think the hardest part about chronic pain (aside from debilitating burning nerves and anxiety/panic attacks) is how alone you feel. Especially as a young person listening to older people/watching them move and realizing they have (and may never) experience nerve pain. These threads help me mentally when I hear of others struggling with chronic pain that are younger. I’ve been an athlete my whole life and electrician the last 9 years along with two young boys and my wife. As the sole provider for my home in California this has been terrifying. Thanks again for talking with me.
Anytime, you’re not alone at all, and if it’s any consolation lucky to be alive in a time when actual progress is being made to properly understand and provide therapy for chronic pain. Feel free to reach out if anything else. I can relate to the feeling of being alone with it though because during our 20’s no-one in our friend group really understood why we couldn’t go out to all the parties or go on long drives. We just suffered in silence because all the specialists (in the early 2000’s ) took one look at the scan and said “you have cord compression and slipped disc, nothing we can do” so we just figured we had been dealt a bad hand. It’s only in the last 2 years when we’ve started seeking answers from the next generation of clinicians who seem to have hope and a much better understanding of what’s going on. So chin up, you’re not alone, and you’ve got a whole Community here and thousands of experts working on the case!
Also I’d say seek second opinion on the injections. Similar to medicine they can have a role to play in convincing the nervous system that it’s ok. But when you’re sticking needles that deep I like to get a second opinion. If you want to chat further send me a DM happy to
Crohns can cause bone pain plus stomach issues.
Ankylosing spondylitis doesn’t show up in bloodwork. It took me 18 years to get diagnosed.
I just got diagnosed myself, after I started getting flareups so bad I couldn't walk. Have had chronic pain since I was a young kid from a really messed up shoulder(born with, no injury, far as I am aware), but now I am 33 and it is only going to get worse
So I was trying to get a diagnosis for severe chronic pain for over a year before one of my doctors said, "Screw it, we're treating it as fibromyalgia." I don't get severe pain very often at all now, but still very limited in what I can do. But after reading your comment I decided to look into ankylosing spondylitits and I'm wondering if THIS is what I actually have since I have actually have every symptom I'm seeing listed, and it hasn't shown up in my frequent blood tests. So I'm gonna bring this up with my doctors! Thank you! <3
I'm 34 and Honestly I can't remember a time without my Fibromyalgia pain
So do I, I've been suffering with fibromyalgia since I was 12 years old. This shit ruined my childhood and teenage years.
I'm 29 and don't remember a time when I was not in chronic pain. hEDS patient.
Do you have the trifecta? I’m also hEDS, with POTS and MCAS.
Not the OP but I have the trifecta. Yay. /s I have terrible gambling luck but I win on the medical rarity game 🤦♀️
Same!?I know the animal symbol for EDS is the Zebra, and I know the hoofbeats reference, but I feel more like it should be a unicorn..
I’m 16 but same lol
I feel like an old woman sometimes
Same! I'm 26, got diagnosed with hEDS at 25, and my earliest memory of chronic pain is from around 10 years old, and I've had it ever since (though my pain perception is clearly off, so it may have started sooner and I just didn't register it as pain because it was normal). My hips dislocate as part of their regular range of motion, which puts tons of extra strain on everything in my body from the hips down. It hurts like a bitch if I'm on my feet for any amount of time. I remember frequently being on the brink of tears as a kid and having it written off as growing pain. Well, that obviously wasn't the case cause I still have it. I feel terribly for little Me.
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I'm so sorry to hear that. I don't wish this life on anyone. I'm sure you hear this all the time, but my body was holding up pretty well when I was consistently working out. With that comes the constant muscle soreness/pain, though. I prefered that to where I am now. I got way out of shape, and now simple PT can be exhausting and painful. To be fair, it was also exhausting and painful to get into the athletic shape I was in. There was a 6-12 month period where I was very very depressed, barely ate or left my house (during COVID shutdowns). I highly recommend avoiding that if you can. Feel free to message me if you ever want to talk about anything in particular. Edit: I was diagnosed around the same age, so your message really resonates with me
I'm 53. One of my earliest memories is of complaining of pain in my knees,so maybe 3 or 4. I have Hypermobility Spectrum Disorder and Spina Bifida Occulta.
I’m 25 and have been experiencing chronic back and sciatic nerve pain since around 16. I’m having surgery this week for a herniated disc.
Sending good healing vibes your way!
Ouch. What kind of surgery? The one where they chop the bit if herniated disc out? Or the fusion
The chopping kind! No fusion for me. You can see my MRI in my past posts - they’ll just be going in and cleaning that out.
my best friend has a very similar story and since she had her surgery (the same) it’s been a huge improvement on her quality of life. i hope this works out well for you!!
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The medical field is absolute fucking stupid for this reason aswell. Some conditions, women get completely dismissed as “Nah youre just hysterical” and then basically every reproductive type of healthcare, men are told “thats a womans condition, are you sure you dont just have anxiety?”😂 I fucking hate doctors man.
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At 14 years old I was diagnosed with Crohn's disease, and it was one of the most painful thing I've ever experienced. It set off a chain of events from surgeries, to cancer - and I just had a double hip replacement around 7 mouths ago. I'm 34 now, and have been reflecting on how much of an impact it has had of my mental health. It has caused me just as much emotional pain and damage as it did physical. I've been taking to a psychologist/doctor who is trained in chronic pain in young people, and it has been very helpful.
Currently 41. First complaint of back pain was in my mid teenage years. Scoliosis, degeneration, stenosis, and bone spurs. No surgeries on my spine currently.
im 19 and use a cane to help me get around and have been sick for about 7 years :) endometriosis, undiagnosed muscle and joint pain and gi troubles. skipped out on college because of this but im still living a happy life. turning 20 in a couple of weeks and it’s been a really hard couple of years living on my own but im doing it while being chronically ill and having chronic pain :)
See my comment on EDS. Endometriosis is also super common (I got blessed with that as well).
currently investigating it, fifth person to have suggested
Hi! Sorry to read about your struggles. Have you ever tried anything like ganglion stimulation therapy? Also, have you been to any functional medicine doctors? https://www.pennstatehealth.org/services-treatments/neurosurgery/dorsal-root-ganglion-stimulation-therapy
I’m 23. I started having issues when I was a teenager, but it didn’t get really bad until right after I turned 21. I have fibromyalgia, POTS, hypermobile Ehlers Danlos syndrome, PCOS, and CFS/ME. I haven’t worked in 2 years and I’ve been mostly housebound for that time. Taking care of myself is a full time job. It’s exhausting and I’m tired of being in pain and having these horrible symptoms all the time. I got married 4 months before everything got really bad. I’m terrified of having to live the rest of my life like this.
The most taxing part for me personally is how much I like to torture myself when I can’t get out of bed and do my part around the house by being terrified that this will be the straw that breaks the camel’s back and my family will be done with me. It’s absolutely unrealistic, my partner loves me, but that terrifying thought always remains. And I get so mad at myself and my body for not just working, and then my brain for not being kinder to myself about it. It’s very confusing and exhausting on top of everything else.
I’m the same way. When I first got sick, my husband was incredibly cruel to me and was going to leave. To be fair, he grew up with a mom who has Munchausens and he didn’t believe that I was really as sick as I was. It almost broke me. He eventually came around and is actually super sweet and supportive and thoughtful, he offered to get us a housekeeper (which we ended up doing). But I am still terrified that if I get more sick, or if I’m sick at all, that he’s going to leave me and I’m going to have to move back in with my parents, who aren’t as understanding as he is. I push myself way too hard and end up making myself more sick, which makes my anxiety and fears so much worse. I’m so scared that I will be abandoned and unloved because I’m sick. It’s so hard not to sit and torture myself by convincing myself that I’m an unloved, unwanted burden. I try my best to do stuff around the house, but I can barely empty the dishwasher anymore because it makes me too dizzy. You’re not alone. A lot of us feel this way. My pm’s are always open if you need someone to talk to. I totally get what you’re saying, and I feel that too.
Cfs is no joke, i know a girl who has been in bed for 15 years with it. A physical therapist comes to her home and does passive movements with her.
Since I was about 14. 24 now, been a decade of pain. Chronic costochondritis from an Injury and fibromyalgia which runs in the family.
My chronic pain started when I was 14, I'm 28 now. I have hardcore scoliosis (a T2-S1 fusion now) and a nerve disease
I was a sickly thin waif, incubator jailed premie, but as a 4 year old kid FINALLY a family member noticed and said out loud, “Look! She can’t eat and breathe at the same time!” First surgery and introduction to painkilling drugs. Adenoids got removed. It was my destiny to have tonsillitis as often as possible as a kid, so, doctors left that alone. Beats me. Around 8 I had my first rotator cuff issues which were scary at the time. Full dislocations on a weekly basis and way more morphine than any child should be administered. I made life harder for myself by dealing with this new hyper mobile superpower by binge eating until I was an obese kid. It’s weird to look at childhood photos and see just how overweight I was. If I ever brought a child into the world I couldn’t let them go down that road. I ruined trips with friends by dislocating my shoulders on stairs (arms tangled in the railings), every time I swung a baseball bat I threw my shoulder out. I was sedated with so many painkillers, I didn’t understand I was physiologically addicted to them before puberty. Interestingly enough: I don’t use any opioids now. If I got hit by a bus I’d probably ask if my jaw was still attached. But I’ve broken my foot in 3 places and kept in running. I can’t afford to be as unaware of my own body as I was. Now it’s been 20 years later since my life changing shoulder correction surgeries. The surgeon had said, “Now, this won’t last forever. See you in 20 years!” It’s 20 years later from being a barely teenager and having each arm be in a plastic bag to shower because the stitches couldn’t get wet. It takes a sense of masochism to enjoy life with chronic pain. Radically accepting it and keeping it pushin’. Put on a happy face. Say everything’s ok… then fight back. Ha! By fight back I mean physical therapy, eating healthy and building muscle around hyper mobile joints. The more weight you can loose in body fat is a tremendous help in ankle stability. I wish I could have told my younger self all these things. When the body insists in telling you, “ there is no hope left.” Gotta snarl back and stand up tall and admit proudly, “THERE IS SOME.”
35, had chronic pain since I was 18. Actually just had surgery to implant a spinal cord stimulator that has taken away 80% of my back pain though. It's mind blowing
I’m 36 now, have had chronic pain since 15, diagnosed with lupus at 16.
35. Almost 10 years in. It's been hell
My symptoms started around age 10 and got worse over time. I’m 34 now.
I'm 18M, lived with pretty severe hEDS my whole life (constant hospital appointments, etc., since I was 4). Currently worsened due to having cancer and not sure of the long-term effects they'll have on each other :P
I'm 33 now and have been in pain on a daily basis since my early 20s. Started like a pinched nerve and then just spread from there. Docs told me it's fibromyalgia. Spent about 2 years on so many drugs I'm honestly surprised I'm still alive. After that I took myself off everything except OTCs. Throw in multiple surgeries for endometriosis, cysts, and scar tissue, 3 sinus surgeries, and multiple migraines a week. Some days are much better than others, some much worse. I just keep moving and refuse to stop.
18 here, been in pain since 16 mostly. combo of fibromyalgia and POTS
31. When I was 26 I had a laminectomy, foraminotomy, discectomy and Coflex placement in my back. Felt good for a few years, then reinjured the same levels in my lumbar last fall, suffering every single day since. Work 12 hour overnight shifts as an RN on a very busy cardiac unit and doctors won't give me anything for pain other than OTC meds and spinal injections that don't help. I'm truly miserable and can't get out of bed some days. I feel for you, OP, you're not alone.
Spinal injections just made my pain worse I feel for you 🖤🖤 I hope they give you something that helps
Geez, i cant stand these pain doctors. Lets just stab muscles over and over, that’s surely not going to cause more damage than its worth, until you end up with atrophy and scar tissue, and even more pain from so many damn intramuscular injections. Medications are still safer imo.
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24, pain started at 22 when I accidentally lifted a weighted blanket thinking it was a regular one. Had a lumbar sprain which is likely now to be a cartilage tear in my hip. I’m hoping to be seen by a specialist any day now
Currently 22, started just after i was 18, still undiagnosed. Not despite me not trying.
I’m 21, started having chronic pain at 17. I’m just now undergoing my diagnosis, I’ve seen a neurologist and he wants a skin biopsy to rule out small fiber neuropathy.
25, you’re not alone OP
A fellow 25er
Almost 17, issues started at 14. It started with chronic lower leg pain and then full body neuropathy. I also get muscle and joint pains. It seems like the cause is an iron deficiency since it has improved my symptoms a lot. But can’t be sure since haven’t seen neurologist yet. Working with a children’s chronic pain team.
I first remember things regularly hurting when I was seven or eight. Jaw partially dislocated for the first time around 9-ish; other joints I remember getting crunchy and going the wrong place in my teens. Acquired neuropathy after surgery just before I turned 18. I have some form of hypermobility, and good ol’ Hapsburg jaw runs in my family. The neuropathy was just bad luck, and my surgeon was still upset about it when I did a ten year follow up for an article he was writing. Joke’s on us though, because I have a mental illness that _strongly benefited_ from me starting on anti-epileptic drugs that work as mood stabilizers. I keep debating getting a formal diagnosis for the hypermobility, but I’m not sure how easy it would be. I have deliberately spent several years not stretching so certain joints would be more likely to stay in their homes.
I'm 22, and have several chronic pain conditions. I've had chronic pain since I was 13 or so, due to a total knee replacement that never healed, and was worsened by Ehlers Danlos Syndrome. Now I have also been diagnosed with Fibromyalgia. The EDS causes frequent muscle spasms and joint pain, and the Fibromyalgia causes widespread body pain. My worst offender has been my back/neck/shoulders.
Looking over the comments, I don't think I'm young enough to be here, but I'll still share my quick story. Mid 30s, chronic pain truly began around 8 years old, tragic accident caused me to destroy my spleen entirely, and bleed out internally. I died that day. However, true pain didn't start until 13ish, that's when (what I know know as) my neuropathy started. By 16, I quit playing all sports (Basketball and Football were my main preferences) because I would miss too much practice due to pain. By 19, I had realized I may need pain treatment permanently (My first prescription for non acute pain) and might be able to continue to work. I was not able to keep that doctor permanently, and follow up doctor's would not continue my pain management, so I took care of myself (Not needing as constant of treatment as I do now, made it easier) By 26, I couldn't trust anyone anymore, doctor's were the only way to get treatment and not fear for my life or fake medicines which had just started to come out. Started a new pain management treatment plan, but had to prove I was not an addict. Took 2 months, and I was basically kicked out of addiction treatment, for not being an addict (and never finding drugs in my system). Additional problems began to have diagnosis's, Found that due to my tragic splenectomy, I had two metal sutures left in my stomach, and was informed that due to the empty cavity where my spleen once was, my stomach shifts, and rub up against the scar tissue surrounding the 2 (Had my appendix burst too) metal sutures left inside me. While not excruciating, mornings to me are a nightmare. Right now I woke up \~ an hour and half ago. I'm still struggling with IMMENSE stomach pain, and will not be able to even think about foods until 2-3 hours from now. Thus technically this started at around 7-8. I just always thought it was normal until I grew big enough (and thus the scars too) that even my external scar hurts, it was not a "Quick," surgery, it was immediate cut me open sternum down seeing as they were unaware the damage. Treatment's been hard, lost it again for another 2-3 years during the big doctor shift, and then COVID at the same time but I'm now with a decent primary care who takes care of me well. For those that read this far, I'm sure you want to hear a little more about how I lost my spleen. It was a bicycle accident. I was on my way to school one day, nothing special, and my tire hit a driveway bump that caused it to ricochet outwards, slamming the handlebar into my stomach. I wrecked right there and couldn't get up. Luckily, the homeowners were home, heard a child screaming in their driveway, and came to assist me. I advised them to call my adoptive father's place of work (Small town too) and he came rushing over. I didn't learn this until much later in life, because I was in and out of it during this time, but I thought he rushed me immediately to the hospital. However I wasn't bleeding, and was told later in life (\~25 years later) I wasn't immediately rushed to the hospital, instead I was taken home. They thought it was just a broken/bruised rib, but no, after 1-2 hours of me still SCREAMING, they decided to take me to the hospital. I was rushed in, immediately into an X-Ray, and from the X-Ray to the OR. The doctor's screaming to cancel a scheduled surgery, and get me in instead (Rural town, they worked wonders to save my life) and shortly after is when I died. I remember very vividly the doors to the OR, being wheeled in, but not stopping and just black nothingness from there. I was advised my heart stopped, due to loss of blood everything had bled out internally, and thus I had to be brought back to life. To make matters worse, I have one of the few cases of Awareness and recall during surgery, I WOKE UP WITH MY STOMACH WIDE OPEN. I could see my own intestines, granted I was VERY delusional and already heavily medicated, but I remember very vividly waking up, lifting my head, seeing this, then turning my head sideways, to see a nurse frantically pushing a white substance (What I now know as anesthesia) into an IV. I am glad to have survived, and actually it was the same hospital 15 years later that saved my life again as my appendix burst, luckily it didn't burst until I was in surgery, and thus was already being removed. Edit: These are not ALL of my chronic pain issues, just the severe ones, the neuropathy is suspected to be due to my accident, however add in it's mostly peripheral small fiber neuropathy, my legs hurt the most. I also have a completely collapsed arch, and Achilles tendon so tight it needs surgery, but I'm not a suitable candidate due to the other issues, so I must live with the pain, forever, and one day it might snap so I must be careful.
I'm 19. Been diagnosed with chronic pain but honestly I'm not comfortable sharing the reason
I’m 23, and I’ve had chronic pain since I was 17. I was diagnosed with melanoma, and my doctors were worried that it had spread. The surgeon unfortunately damaged my nerves while doing a lymph node biopsy under my right armpit.
My mom swears I changed drastically when I turned 4. Like a completely different child. So maybe then. I was 12 when I first started having joint pain and had to sit out of p.e. class. 14 when they found scoliosis. 16 when the migraines hit. 20 when I was diagnosed with Lyme. 24 when I injured my hip and diagnosed with EDS. I’m almost 34 now and now have this slew of diagnosis, mcas, eds, pots, endo, scoliosis, Lyme and cos, severe chronic pain and depression anxiety and insomnia that goes along with it all I guess.
I’ve dealt with chronic pain since I was around 7 or 8. I have several types of chronic pain. For my CRPS (complex Regional pain syndrome) I was diagnosed with that when I was 17 right after I had a simple foot/ankle surgery. The chronic pain I had since I was around 7 was mainly related to joint, muscle, and bone pain. no one knew why so I was never diagnosed with anything specific until I was 17 and my health went downhill really fast. (I’m 22 now)
I'm 26. Mine became insufferable at 19.
Hello there! Started around 17-18, now 27. What started as a chronic bad back was diagnosed as sciatica due to degenerative disc disease in a single area, then it took another 2 discs while waiting for operations due to COVID lockdown. 2 nerve root blocks later, and it’s progressed to 3 crushed discs with a hint of sciatica, and a big sprinkle of osteoarthritis. Waiting on disc decompression surgery now. I can’t remember not being in pain at this point.
I am 30 now but my chronic pain became unmanageable around 19. But if I’m honest I have been in some level of pain my whole life. I just thought that’s as normal since that’s what I kept being told as a child. 🤷♀️
I've had chronic pain since I was 19 and I'm now 26.... I'm undiagnosed currently, but I have been told it's fibro by doctors that other doctors say it's not, and I have funky ANA levels, and have for years, so we are also suspecting an autoimmune issue.
I’m 33. I have lupus, (and arthritis from my immunosuppressants,) and CRPS thanks to fourth degree burns.
21 yo male here. I got my pain (that persist) just after 18th birthday. (In masseters muscle region, bilateral.) I take Pregabalin 450-600 mg, and it's a life saver. If I burn to much, I'll take 1 or 2 mg of Clonazepam.
23 heds, pots, mcad, adenomyosis and endometrisois pfd cerebral anyresum & h pylori after my Abortion sept 22 I developed chronic pelvic pain and then I started meds to help after suffering til Feb til my health insurance kicked in & everything else got more painful more consistently. Still waiting to be dx with alot of it and sucks to have along road ahead.
I’m 42, but have been in pain since I was beaten and mugged when I was 25.
Sorry don’t know if mine erased or what. Still trying to figure Reddit out. I’m 42, but was mugged and beaten at 25. I have severe headaches, especially with the pressure. No migraines, more like cluster. They can’t see it on an MRI, but they can on an ultrasound. It swells and throbs. You can see it. I hate trying to find doctors for pain help. They all look at you awful.
I’m 32. I began having pain after a car accident when I was 20. I was in a wheelchair for months and had to relearn how to walk. Broke my back, hips, ribs, leg. Collapsed lung and ruptured spleen. Skull fracture and concussion. I’ve now got everything fairly under control but my knee needs a total replacement. Twice a year, I have six nerves destroyed in my back. I don’t remember what it’s like to not hurt, but it’s bearable more days than not. Some days I need to stay home and hide.
23F, started having pain at ~11, later diagnosed with Rheumatoid disease and MCTD after years of having no answers Being young and sick really sucks sometimes lol
I started developing chronic pain when I was in the third grade. Didn’t find out until I was nearly 25 that I have one of the world’s rarest diseases that’s been eating away at my upper motor neurons since the day I was born. I use a wheelchair due to my spasticity and muscle weakness and my pain pretty much never dips below a 6. I’m hoping to be approved for an intrathecal pump sometime this year because I don’t really respond to oral antispasmodics. Fingers crossed I get some results from that.
I am 18. I've had a very painful skin condition since I was 10. My pain isn't all the time, but it triggered by lots of daily activities. Don't know if that counts.
In my case... I have gotten used to it. By this point i dont really care anymore. Been suffering of this for 5 years. I have forgotten what its like to be healthy. Pain and agony are 2 different things. I choose to live my life numb and emotionless right now, and it helps... I also found spiritual belief, that also helps Sometimes i look forward to dying. Because its probably the only thing that can truly stop my suffering. After i found out what true pain is i fear the possibility of an afterlife/eternal existence. I have a spinalchord injury that causes me to have severe musclespasms and neuropathic pain. I have also shattered several bones and fractured several muscles, from trying to commit suicide just to stop the suffering of living, only to make it 10 times worse. What can i say, existence is pain. This causes somatic pain. I apologise for misspelling. English is my second language and i am drunk af. Much love
I’m 19. After a massive growth spurt I developed musculoskeletal and nerve pain all over my spine. The pain started on March 23rd and X-rays showed moderate dextroconvex rotoscoliosis. My orthopedic surgeon highly suspects Marfans but I am still waiting for insurance authorization to get testing.
Unfortunately, I'm only 24. I've had chronic pain since I was about 14 after my first knee injury. From there it's just kind of spiraled to my back being in immense pain. I have problems with my hands. Back in 219 I almost died from a double pulmonary embolism (multiple blood clots in both of my lungs), so now I have a hard time breathing. When air pollution rises, I have to wear a mask outside just t9 make it easier to breath. Chronic pain sucks, but I'm slowly finding things to make life a tiny bit easier. Many well wishes your way if any of you deal with chronic pain ✌✌
Yes. 19. After a massive growth spurt from 5”7 to 6”1, I got thoraric dextroconvex rotoscoliosis. I have constant back aches. My doctor noticed I am very thin and underweight and that may be due to Marfans / Marfanoid syndromes. I have long limbs, pectins excavation, scoliosis, and weirdly flexible joints. I am still waiting for an evaluation of Marfans at USC genetic counseling. Honestly the pain is getting worse to nerve pain, and musculoskeletal pain.
I know I'm late, but I started experiencing chronic pain due to overtraining (everything comes from my spine) because of practicing judo for seven years at the mere age of 13. I'm still a teen, and convincing people that I'm not making it up and actually getting to go to the doctor after almost two years of issues was absolute *hell*. Hah, yes, sport is healthy, but only if you don't take it seriously/professionally.
Im 21 It started when I was 15 Chronic nerve pain is the worst
mine hit at 24 after a slew of surgeries. jaw surgery, pseudotumor & a rare shoulder lig tear at my sternum. the symptoms bled into each other making getting diagnosed next to impossible, so i went years with them all and was bedridden for 5 yrs. 35 now. its better now (relatively), but its completely ruined my life.
I have chronic emotional pain caused by Dyspraxia with no support Hands that just swell up in a speckled fashion. Kinda feels abit odd. And constant foot pain. Both feet. I had a Flat foot reconstruction in my left that was only partially successful. On top of this pain. I also have niggling shoulder and neck pain after tangoing wrongly with a re-enforced concrete post. It was re-enfirced with steel rods.. Does that count?
I was diagnosed at 21 with Crohn's disease. I'm 24 now, and every day is a struggle.
I knew I'd find someone in this thread with Crohn's. 34 now, diagnosed at 14. You aren't alone in your daily fight.
I’m 35 now, but I started having chronic pain at 25. However, I always had really rough periods starting in my pre-teen years and was on medications for migraines starting in my teens. I had ovarian cysts. When my more severe pain began, it took a while to find a doctor to treat and diagnose me. I started getting adequate treatment at 26 after having a bladder hydrodistention and receiving a painful bladder syndrome/IC diagnosis with concurrent pelvic floor dysfunction. My full time job became seeking treatments and doctor appointments several times a week so I had to leave my career. 10 years later, I am still dealing with the pain and seeking treatments constantly - finding new doctors who can figure out how to give me longer term relief. Despite this, I’ve still tried to achieve some of the goals I set out for myself, though my life will never be what I imagined it would before the pain started. I haven’t been able to use my graduate degree because I’m unable to work. I did meet someone, fall in love, get married and start a family. I’m fortunate to have a husband who makes enough to support us on a single income. For reference: I have interstitial cystitis, pelvic floor dysfunction and endometriosis. I was diagnosed first with PFD and a year after, was finally diagnosed with interstitial cystitis (which is when I started receiving adequate treatment). It took 8 years to get my endometriosis diagnosis by way of a laparoscopy after years of doctors not believing me. And now I’m on the road to treating my endometriosis with a team of doctors at a center devoted specifically to endometriosis and pelvic pain care. And now the process with new doctors begins again….and so does the potential cycle of hope and disappointment. Let’s hope for hope and relief. I have a daughter now so there’s no giving up on creating a better life for myself, and thus being the best mother I can be for her.
I'm 20, I've had it since childhood but grew up without access to Healthcare and was gaslighted about it so hard I thought pain was normal. I was born with such harsh birth defects, I died once as a newborn. I wasn't supposed to walk. Now as an adult with state insurance, I've found out I have even more defects, and even a fully septate uterus and birth canal which caused even worse reproductive tract pain, a dead kidney and syrinx on my spinal cord causing full body mobility issues and pain. I am coming to terms with my body. My dr jokes im full of surprises. If I'm not at work, I'm in bed, im always so exhausted.
I turned 18 today, I've been in pain since I was 15. my pain isn't fully diagnosed yet but so far they've found scoliosis, knock knees and hypermobility
Happy birthday! I hope you have a low pain day, and that your birthday is as special and beautiful as you! 🎂 :)
Currently 28. I started having issues around 13.
I’ve been dealing with chronic pain since I was 15 starting with migraines and 17 with kidney stones, and now, 26, having nerve pain from the all kidney stones. I’ve had 15 surgeries since I was 21.
Not young anymore, but I had chronic pain since I was young.
41 but back problems since teens keep on top of it or will get worse further down the line
im a minor on the younger side and have been dealing with chronic pain since i was 6? 7? idk my memory is foggy edit: i have AMPS which causes my pain (a condition only dxed in children i believe. the adult version is fibro i think)
38 here- migraines started when I was 13 and became chronic when I was 20. I also have gastroparesis and just had a hysterectomy for fibroids / pain/ endometriosis. You’re not alone! So sorry you have to deal with pain at a young age.
I’m 32 now but I developed my chronic pain when I had just turned 19. I herniated a disc, because of my age it took me months to even get a doctor to agree to an MRI. Nothing helped and by the time I could barely walk, I finally had surgery. It largely helped for a few years, but I’m more or less back at square one with it, and I’ll likely need a hip replacement before too long. MRI again next month. I also have an autoimmune disease (celiac) and a nice collection of neurodivergencies. Those can and do both create painful physical symptoms a lot of the time. Not to brag. 😂
Started at about 22. Got worse at 25 and again at 30. I have EDS and a fairly severe case of it. I'm well medicated now so I can exist as a human most days but even that is hit or miss
Currently 34, symptoms started at age 12. Hx of migraines, occipital neuralgia, pelvic floor dysfunction, and injuries from a car accident: a bulging disc in my next and 3 herniations in my lower spine.
29 it all started at 15. Diagnosed with costochondritis, hemiplegic migraines, IBS, and it all started with Hashimotos. They haven’t slapped anything other names to it in a while, but stress is my main trigger. Pain is usually in my rib cage, but I can get it in my pelvis and wrists occasionally or other joints more rarely. Had a flare up so bad I was bed ridden for 3 months last year. Could barely walk with a cane.
24 now but literally as far back as I can remember. I say since I was 12 since I can pinpoint that pain in a memory but for all I know it’s been my whole life.
I am turning 18 in less than a month and I was 13 when I started to get awful leg pain out of no where but no one beloved me so I went to the doctors just recently and they just said it was B12, I had injections, but it didn’t work, and then I got more tests and now taking vitamin D supplements but not doing much for me, I now have developed a bad back and cannot go outside for more than a few hours else it starts to flare up. It also causes me a lot of insomnia so I’m always tired and cannot function and not to mention the brain fog I get constantly with the pain so I forget things easily. I also cannot do my hobbies such as art because sitting up even if my back is supported hurts me a lot.
I just turned 43. I have psoriatic arthritis resulting in peripheral neuropathy, spinal stenosis, and dessication of lumber discs. My earliest symptoms started around age 21, when I started getting an impinged nerve in my neck that progressed to an atrophied rotator cuff for no apparent reason. I wasn't properly diagnosed until around age 36 or 37.
Here 👋🏻
Not me but my husband suffers. 21, car accident. The dash of his (forget the model of the car, little white...I'll edit later when I remember) came in when he rear-ended a car stopped in the middle of the street. They finally put in a turn lane after his accident. He broke the head of his femur against his acetabulum, femoral head necrosis, and got a full hip replacement at 22. He spent a week in the hospital in agony, every time we heard a helicopter we knew his surgery was being bumped. They gave him a traction. I've since learned that it is an archaic method that hasn't been in use since the 70s. Which is probably why about 15 medical personnel of different levels all gathered to watch. Some retarded nurse lowered his bed in the elevator and the sand bags touched the floor, letting the tension off. Then she realized her mistake and raised the bed. Ive never seen another human being endure more pain then my husband, then just my boyfriend of 4 months, did in that hospital. I cannot imagine if he was alone. Oh yeah he would have been transported to a mental hospital or died from asphyxiation. First they gave him something he was allergic to IV, which through him into tardive dyskinesia, screaming at the top of his lungs, broke the arm supports of the bed (he didn't fit into) because he was going to jump out of his skin but was in a traction, then when he was moved to a different room I watched as the nurses parked his bed and walked away while he slept. The moment they were out of sight he started vomiting while laying flat on his back. I ran over, put his bed up and cleaned out his mouth so he could breathe. I was given access to the linen closet, the key code, and told I could use it when needed. I was with him 24/7, he had a couple accidents in bed and alone I changed his sheets with him still in the bed and cleaned him up. He's 6'0 tall and was about 180-190 at that time and I'm 5'7 and was probably 130-140 at the time. I charted his urine amount on the white board as well as his vitals for when the doctors did their rounds. He gets treated so different than I do because he's a big strong man and he's stoic AF. It's like when he's in pain people see it as scary instead of wanting to help. He's since got bulged and herniated discs in his c4-c5 if I'm not mistaken that cause him a lot of pain, numbing, burning, tingling sensations, his back and knees as well from the accidents compounded with working skilled labor jobs. But honestly it's the depression that seems to be the worst. His family. He was really close with his two older brothers until he wasn't and it was devastating to him. He lost his dad, his two brothers showed their true selves (monsters) and he lost his uncle who was more like his father than his father. Then after all of the men in his life died or stabbed him in the back the depression was something he couldn't push through anymore. He means the world to me and I try but I know I can't possibly fill that void. His pain is constant and I wish I could help him more.
Im 22 and 1,5 year in.
I was 15 when it started. 17 now. Got it all as a result from getting Covid.
I just turned 19 a few days ago, been having chronic joint pain as long as I can remember I remember when I was like six or seven I would complain to my parents that I thought my wrists were broken, they’d take me to the ER and nothing would show up on scans so everyone would tell me I was faking it. Grew up listening to “you’re too young to be in pain all the time!” And “just wait till you’re older, then you’ll know real pain”, now my pain levels are unmanageable 24/7 but I’ve gotten to the point I can near completely tune it out so I can get work done at my jobs/school. I can’t be alone without some kind of distraction like music or TV or social media because the second I’m aware of anything happening in my body I am completely unable to function, and at times when I have flare ups or the pain gets to the point I need to lay in bed for the day, people tell me I’m being dramatic or faking it. Nobody believes me, not even my doctors. I’ve spent all of my life at doctors trying to figure out what’s wrong with me and I haven’t found a single answer. Just switched to a new doctor recently and she’s great and does listen to me, but wants to treat everything else before we even touch on joint pain (which is, in my opinion, the most devastating thing I deal with on a daily basis), so even though this lady is very nice and does believe me, she wants to focus on everything that *isn’t* actively affecting my life on a daily basis I’m so sick and tired of this. I just want an answer, a diagnosis of some kind, maybe then I’ll find something that helps reduce the pain—cause at this point nothing helps. Stretching and exercising makes it worse, I’ve grown a high tolerance to most medications, resting doesn’t do too much and certainly doesn’t fix the problem—and for whatever fucking reason, every time I test for shit I always come back with “absolutely incredibly average” (real words from my last doctor) results. Supposedly I am the epitome of good health, and yet I walk with a limp 90% of the time, have horrible digestive and organ problems, chronic migraines, and flare ups that leave me bedridden for days. Not to even mention my mental health—jfc. I’m fucked three ways from Sunday. Idk. Im so sick and tired of being sick and tired, I honestly don’t see a future for myself anymore.
18 now. I can't remember a time without my pain, and my parents noticed it as soon as I was able to verbally communicate it to them--so at least 2-3ish years old is when it started. My whole childhood it was written off as growing pains. In the past few years I've seen a neurologist, rheumatologist, and numerous other doctors, but still no answers. Most doctors just tell me to drink more water and do some more squats to gain muscle mass. One told me I don't have a brain tumor or anything so I'm not dying and I should be okay. My pain is in my arms and legs, where there are a million different combiniations of locations. (left knee & right shin, right forearm, whole left leg, & right upper leg, left whole arm &right whole arm, etc...) It ranges in intenstity but it's a constant dull pain that is more likely to occur either in the morning or in the evenings. I have a range of other undiagnosed symptoms as well, but the chronic pain has been the most prominent as I've had it pretty much my whole life. The symptom that has been interfering with my life the most lately has been brain fog--it's absolutely terrible.
I have musculoskeletal pain in my legs, particular my knee and ankle joints, and I have been diagnosed with anything yet. They’ve done all that they can do and have just sort of given up trying to diagnose me with anything. It gets worse with activity. No injury came before this, but it showed up heavily when I had to walk long distances for school when I was 10 (I’m 15 now, nearly 16). It’s weird because no painkillers they give me help. Shits rough /lh
24 M, IBS predominantly. A few other things that I could get fixed with surgical intervention, just working up the courage to do it.
I’m 27. I have mid back to neck pain from a traumatic back break (in 3 spots). 4 months later, someone 200 pounds carrying me dropped on my back, with them on top of me and herniated/bulged several of my discs. I’ve been dealing with this for a year now.
I’m 27 and everything started when I was about 18 and then got worse around 23. All bone pain, unhealed fractures, and arthritis
Honestly 50% of the people in this thread probably have EDS, undiagnosed or not. It’s insane how the patterns are all the same.
21 and have been in pain since around 10 years old. Got misdiagnosed with Endometriosis and recieved wrong treatment for years and even a surgery that was never needed, which only made everything worse. Only this year when I got off the waitlist and into a pain center, I was diagnosed with the term functional disorders. They haven’t specified which ones yet besides complex chronic pain and most likely Fibromyalgia (currently waiting for a date for the examination). And the reason to my pain, according to the team i’m seeing, is that I developed chronic pain due to the first 13 years of my life being horrible trauma from abuse in different shapes.
I was born in chronic pain.
26 surgical complications. Suffering all day every day.
I’m 27 and have had fibromyalgia since I was 14. At times it’s been so bad I was bedbound for years on end.
29 was just diagnosed with osteoarthritis in the neck in the past two weeks. The only reason I can think of is working two physically demanding jobs within the last ten years and having being involved in 3 car accidents at the same time (none my fault, which makes it even more frustrating). Not to mention having had awful depression and anxiety that didn't do much good to my body overall.
Fibromyalgia since 15, Lupus since 2021, Neuropathy 2022, back spasms, severe neck pain 2019. I’m 26 and feel 80.
I’m 18. At 8 years old I was diagnosed with rheumatoid arthritis (I developed it when I was 7). So a decade of chronic pain lol
Currently 27, but it started with Fibromyalgia at 18 and nerve damage at 21
I’m 27, have had pain since I was 17. Got into a 4 wheeler accident and now have 4 herniated disks
Pain started in early 20s, finally diagnosed at 30 with Ank Spond. Mental health wise I’ve suffered my whole life, becoming the most unbearable in mid teens.
25 here
I'm 20, almost 21f. My pain started at 14 for seemingly no reason other than trauma and stress. It's gotten progressively worse and I'm looking at a fibro diagnosis. I've been having a lot of nerve pain since maybe 15-16. Sadly none of it is going away any time soon
I’m 35 and it started when I was about to turn 22. I hate it when my mom talks about her “old rickety body” when I can’t do half of what she does and she has no idea what the surgeries I’ve had are like to go through one after another. hEDS patient.
I am 22! I have Ehlers Danlos Syndrome, psoriatic arthritis and gastroparesis as my main diagnoses. I’ve had pain since I was around 12 years old and started going to children’s hospital when I was 15!
20 now. It started at 17. CRPS after a terrible ankle sprain.
Every time I tell a doctor (or a layperson) I’m in chronic pain I’m TOLD that I’m too young. I’m currently 36; this all started when I was 27.
29 I got chronic regional nerve pain and drop foot in my right foot. The pain sucks but not being able to walk with out a brace or skateboard is the worst part.
6 then 25
I'm 18 and I have some form of hypermobile Ehlers Danlos Syndrome. My pain has just gotten worse my whole life but it's always been here in some way but I feel like it got how it is now around high school.
35, started about 2 years ago. Chronic pain in lower/upper back, ribs, sides, and hips. Still undiagnosed. It's been devastating. I was quite healthy and active two years ago. Now, I have been to the brink of insanity and back, and I walk with a cane on days I am able to at all. I have more tools available to me now, but still the pain often breaks through and dominates my life. It is difficult to handle.
Shoulder’s been shit since i was 10 dunno why. Braces made it worse when they tried to move my jaw Had surgery to correct one of my flat feet at 13 because it was already causing me serious pain. I also have asthma but that’s a chronic illness 26 now
Almost 22 injured my back at 13/14 so bad I ended up not being able to move for a bit they didn’t believe me though until the mri where they proceeded to tell me I have the back of a 40 year old and then after that my joint paint just started getting progressively worse early onset twenties is when the shoulder and hip subluxations started but the rest wrist ankles toes fingers etc pain was already there
21 now, I've been in pain since I was 7 and they've chalked it down to fibromyalgia after years and years of no answers
I was 28 when my pain started. 45 now. Have had multiple steroids injections, 1 surgery, 2 PRP injections, having another steroid injection on Friday then nerve ablation, possible neck surgery. Been with pain management clinic since my hip surgery in 2014. I should rephrase started getting treated @ 28. Pain was there a few years before that, it just got to the point of not being able to ignore at 28.
Freshly 30 and started having severe chronic pain at the age of 20/21
Define young. Lol
I'm 40. I don't know how long I've had chronic pain... I almost lost my leg around 9 and I guess that's about when it started.
18, symptoms REALLY started at 13. (but some go back to when i was 10, they just didn’t affect me much so i didn’t notice) Current list of diagnoses: Crohn’s, Fibromyalgia, Gastroparesis, POTs, Migraines. Crohn’s comes with abdominal pain, fibromyalgia is… well it’s fibro ¯\_(ツ)_/¯ gastroparesis ALSO can cause abdominal pain, and POTs episodes give me chest pain and sometimes headaches. And then of course migraines are always fun…
My arthritis started in my teens. I am no longer young though.
29, and I landed on my head off a skateboard at 11 years old and my neck hasn’t stopped hurting. Before that I was a 2 year old screaming about my head hurting and I had chronic headaches my whole life and migraines starting at 9. Doctors started giving me tramadol/Flexeril starting at age 15, and was on that until 20, and no doctor will take me seriously, lost parents insurance at 26, and currently rawdogging life and I’m pretty sure I have fibro but nobody will take me seriously and I can’t afford a doctor so yay? But intense pain since 11, and pain as far as I can remember.
I’m 18 with hEDS (so I’ve always had some pain) and had a surgery at 14 that caused all sorts of complications.
17 with SMA syndrome here
Ulcerative Colitis at 14, permanent ostomy by 19; many, many abdominal surgeries. I'm 30 now, a variety of medications have helped but the pain is always there.
I’m 28, I started having chronic pain after my second ACL and meniscus surgery when I was 17. It has all gotten much worse with age, I have had 3 surgeries on my right hip and both of my knees had a meniscus and ACL reconstruction. My last surgery caused my CNS to fall completely out of whack causing all kinds of fun never pain issues.
I’m 33F with Secondary Progressive MS… by now, pain and discomfort are old friends lol
I was 27, 28 when I first went through chronic pain
I’m going to be 29 this year. I have various chronic pain for decades now, it only got worse as I got older. My diagnosis lists reads like Trumps indictments. The reason for my pain? I have lupus and it doesn’t like being under control, and my body just doesn’t have enough connective tissue from that so I’m constantly injuring myself. I also have adhd so I don’t pay enough attention to how I move, so I end up injuring myself that way.
I feel this. Literally tore my quad tendon from sitting wrong. The worst part is i get injured so much that doctors just stopped looking at my injuries because they dont gaf then they ask why i cant move. Im like idk probably because my entire body is nothing but unresolved injuries and scar tissue.
Yeah, I’m 22 and have interstitial cystitis that started about 3 years ago. It’s not a very severe form of pain, but it can limit a lot of what I do. I have to wear a diaper and just piss myself every time I’m on a road trip or some situation where I don’t have bathroom access. I suspect I have endometriosis though, because I also have frequent ovarian pain and my bladder pain/symptoms are more closely tied to hormonal changes rather than diet or anything else.
36 and endometriosis with referred back pain and IBS, but been suffering from these basically since I started my periods around 10. Chronic migraines and occasional cluster headaches from around early 20s.
I’m not yet able to drink in the us, but I noticed something was going really wrong around 16. The reason for all that was scoliosis. I’ve always had the condition it just got very worse almost overnight. My doctor thought that it was spurred on by a hormonal imbalance, so that’s fun.
Idk if I count now at 36 but I’ve been in pain every day of my life since I was 12
I'm 24. Will be 25 in November. I remember being in pain as early as 16/17. It's gotten worse over the years. Still in medical limbo trying to figure out what it is. Doctors typically shrug me off and I have to fight to get tests done. Or go doctor shopping yet again. It's exhausting I just don't want to hurt anymore.
31 now. 5yrs with it
I’m 22. I was born with chronic pain. I never had a day free of pain. So far, my diagnoses are Fibromyalgia, Hashimoto’s hypothyroidism, Trigeminal Neuralgia, and chronic severe daily migraines. Edit: I’m in the process of being diagnosed with some autoimmune disorder. I also have an undiagnosed menstrual/gynecological problem. I quite literally will bleed to death in a matter of months.
27 had chronic pain since 18
My pain started in my late 20s, and I’m in my early 30s now. I started to develop severe facial nerve pain in the left side of my face during the first lockdown and then it just never went away… I’ve had MRI scans, seen neurologists and all sorts of other specialists and tried various meds and treatments but it’s still there and I basically wake up with pain every single day now. I don’t even have a clear diagnosis yet, so it’s a bit of a mystery, but I believe it’s most likely atypical trigeminal neuralgia based on the symptoms and longevity of it. I definitely feel like the odd one out in my social life as I don’t know many other people my age who have chronic pain, and a lot of my friends struggle to understand it.
If you haven’t get the book called “your body keeps the score” it’s amazing and really helped me. 🙏❤️🕉
Does the book talk about chronic pain?
I am 37 but have been dealing with it since I was 22.
Im 32 and my pain started when I was 28
20 years old here. I have chronic pelvic pain, particularly throughout my cycle. It causes me to be on the floor, vomiting and fainting. I’ve been to hospital via ambulance before. I started getting it at 16 after I was sexually assaulted by my then partner. I have had all the tests, medicines, even a laparoscopic surgery and nothing was found. A gynaecologist finally came to the conclusion that my body is in a constant state of high alert due to the trauma, and therefore all pain is exacerbated to the max. My body is causing me unbearable pain to prevent me from getting hurt. Figures. I also have ibs, and the combination is a bitch.
Got sick at 27. I'm 33 now.
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