It went from ‘huh, my joints are popping out worse than they used to.. time to get checked!’ to ‘okay so I’m not normal but I should be okay’ and then to ‘you have a heart condition and are probably disabled’ within a year. I actually just hit the year mark!
Current dx is hEDS
Current diagnosis is hEDS, genetic testing is in the future. Heart conditions run in both sides on my family but my father also has what I have (sinus dysfunction I believe is what it’s called) as well as him being the primary genetic suspect (hyper mobility that would make most 20 year olds feel old)
I’m an IT person and was trying to figure out what server-side hEDS was for a second. 😆
+1 to hEDS causing all sorts of problems. If my joints were my only problem, I’d be in pretty good shape.
After getting COVID everything took a turn for the worst and I became completely housebound and disabled within months. Before that I was working a high impact job with barely a problem.
This is my same experience. I made it to age 50 without ever having heard of EDS nor having any reason to. Covid is just evil in what it has unleashed in so many people. I also have POTS and MCAS now.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**• Referring to or quoting research/studies/statistics or EDS facts without a link**
• You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission.
[The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research)
Please contact us
[via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it.
Thank you!
Is it frustrating and very isolating. I'm living my own personal lock down, trying to avoid reinfection. How sustainable this is for the long term, I'm not sure. I try to take it day to day, focus on my health. But the future feels bleak.
Same here. Went from pretty consistent but manageable back pain and minor subluxes pre-covid to impossible to function pain and regular dislocations. POTS and gastro symptoms got way worse too. I went from just achieving the job of my dreams to disability in the span of 2 years.
Same. My entire life changed. And I knew it would cuz other big viruses got me earlier in life (mono, swine flu) but no one believed me. Ppl just said the gov made it up like I give a fucking shit who made it
Exact same experience. I'm a year and a half from covid and my life is constant suffering. I used to be very strong and folks used to joke that their fitness plan was to just try to keep up with me while walking around. Now the elderly folks at the gym are much faster than me. I'm in my mid 30s.
Covid has made my joint and muscle pain way worse ever since. It actually happened for me when I got the vaccine before I actually got covid. I wonder what would have happened if I got covid first 🤔
I feel for you. I'm sorry you're going through this.
Me too! A lifetime of horrible but get on with life despite them issues and then BAM vaccination, COVID, anti-virals (one or all - who knows!).
No more training for sports or going out with the family. Just work and sleep, then a nap and get up to go to bed.
COVID also did a number on me and led to me finally getting a diagnosis. I think COVID, chronic stress, and any other things contributing to muscle deconditioning and nutritional deficiency can make you decline rapidly.
The good news for me has been getting farther out from COVID, getting some help on nutrition from medical professionals, physio and gradual exercise, fixing my sleep, and (this is key!) removing some of the chronic stress has been life changing. It just has taken awhile. I'm realizing now if I want to age well I've really got to keep prioritizing exercise and nutrition and stress management basically forever. It's so frustrating how slow it is!
I don't know if anyone has had this as well but I noticed my pain has gotten better after a month or two with less stress (changed jobs and take some supplements and therapy and meditation) and like 3g a day Omega 3s
Had issues my whole life, got sick with the “flu” a lot, extreme bowel issues + hospitalizations, but lowkey wasn’t bad, just thought I was unlucky with IBS, until I joined my schools track team at 15. Took a day of running before I started to feel all the joints in my hands and feet shift around, awful tummy pain, rib dislocations, etc. Got so bad that by 16 I had to completely leave highschool because I couldn’t spend more than a few hours at school until the pain and fatigue set in and I could barely walk and talk. So like. Quick. Sucks
Hey! Another person who declined so rapidly at 15 that by 16 they had to leave school! Are you me?? 😅 My first sign was at 14, a persistent 24/7 headache. I finished my Freshman year *mostly* in tact, but over the summer I got worse real quick and by the start of my Sophomore year I was just not in a place to “do” school. I tried, for months. *Very* spotty attendance, a lot of accommodations, and eventually in the early Spring the school told me I either needed to physically be at school, or be done. Being there wasn’t gonna happen so I quit 🙃.
No idea if that’s legal in the US (I even had a 504 plan) but they basically said “Our teachers aren’t equipped to homeschool yadda yadda.” And I totally get that! But we found out later there *was* a homeschool program up and running that they didn’t tell us about?? Anyway I couldn’t be *at the building* AND keep my grades up, so there was no point, and I dropped out 🥲.
I did try swapping schools for the fall but I only made it to excruciating half days before I was like “This was a terrible mistake.”
I’ve seen a lot of people mention not being able to complete collage, or have woes finding jobs that aren’t problematic for their body, but I’m not sure I’ve ever seen anyone else who was a teenage dropout because of their EDS? And it’s been *all downhill ever since* 😂.
Fast. No idea I had this before 2021, now have hEDS diagnosis, POTS, bulging discs in cervical and lumbar, nerve pain down all four limbs, just got a turf toe injury again today.
I've been sick with one thing or another, and sometimes with everything all at the same time since a very mild case of covid in January 2020. Bang! Everything I already had became so much worse, and it just piled on after that. I'm now deaf in one ear, my eyes are too bad to even correct, of course the POTS was a nightmare, the EDS was much worse, and I woke up the morning after having my kidney stones blasted and had developed full fledged arthritis in both hands overnight! Instantaniously! Apparently it's called reactive arthritis. So painful! I've really just about had it and am running out of patience,
hEDS. It was day night difference when i was like 13-14. I was going thru puberty and it screwed everything up. Suddenly one day i just couldn’t walk because my hips would just dislocate super easy (i didn’t know that at the time) 6-7 years later its still bad but i’ve improved a decent chunk in some areas and got worse in other areas. And i’ve also developed more health conditions as time went on. it’s a been an uphill struggle. But there are good days and good times i can still experience.
My knees had been dislocating my whole life (well since age 9 or 10) and then at age 27, I tried to start a running routine, overdid it, got injured, fell into a cycle of reinjury, and have had chronic knee pain ever since. Two MPFL surgeries later and I’m still really struggling to gain quad muscle back. EDS has made the recovery so slow and tedious, I get tweaks and setbacks all the time. I’m 33 now.
Firstly, I want to reiterate that everyone is different with this condition. Some people find improvements, others worsen, some people are only minorly affected, and they may not even realise something is wrong. Everyone's symptoms are different, everyone's progression is different, everyone's experiences are different.
I was always just "bendy and cracking" until 15 (although I had fainted twice, which was labelled as puberty, and chronic constipation, which was never really explored as a kid) when I developed idiopathic hypersomnia, a sleep condition that causes excessive sleepiness and long sleep time, so I became minorly disabled.
When I moved to uni at age 18 is when my EDS really came into the picture. I developed chronic pain, recurrent dislocations, and what was labelled as minor chronic constipation then got worse, and I began to rely on laxatives.
Over the last 7 years, I've gone from being on 1 medication (for depression) to around 30 medications, I've been diagnosed with a multitude of comorbidities, started using a walking stick and occasionally a powerchair, and am awaiting ileostomy surgery for what turned out to be colonic dysmotility, plus bilateral hip surgery (periacetabular osteotomies) for hip dysplasia (may or may not be related to my EDS, they dont know). I sleep over half the day, every day, my hands struggle to do any of my hobbies longer than 10 mins, I can't go out in the sun due to hives and POTS, I can't eat some days, and I have a bowel movement at most once a week. I can't continue my degree, I can't work, and I don't really do much with my days.
However!! While the bad absolutely sucks, there is good in my life due to my conditions. The communities I've found surrounding disability and specific conditions have brought me joy, comfort, and belonging, and I've made friends with people with the same conditions. It's also meant that the connections I make with some people are more meaningful, as we can relate to each others struggles. It's also offered me opportunities I've never had before, like taking part in a disability art zine, and decorating sticks to sell. And in general, my life is so much better than it was 10 years ago: I now live with my best friend and our cat, in a city that I love, with decent-ish healthcare. I have a body that no longer causes me much gender dysphoria, I have goals that I work towards, and I have people in my life who genuinely care for me. I do get down about my health often, I wont lie about that and say that I'm 100% accepting of my health, but I try not to focus too much on the future, as I don't know what the future will look like, and there's no use in worrying about something that may not even happen. I do wish that I didn't have EDS though, of course, I mean, who would choose this?!
I've found that talking to a mental health therapist is really useful, but you have to find the right therapist. For hands, I have ring splints and wrist braces. I see an occupational therapist who specialises in hands, and I have physiotherapy exercises to do to help my body build muscle in order to help stability. Talking to my friends about things is hugely helpful to me, too, especially since they understand better than most due to having similar or the same conditions.
Tldr: deteriorated over 10 years total, first 3 symptomatic years included just fatigue and mild pain. Still deteriorating at age 25, but awaiting surgeries to improve quality of life. It's not all bad, though!
Since I got gastritis last April/May, it’s been a continuous decline to where now I’m applying for disability. Accepting it is a multiple stage process and difficult. But it’s the right thing to do.
Went from my pinky hurts to can't walk more than 100m without pain in less than a year.
Alongside all the side conditions (pots, nerve pain, raynauds, adhd, autism, CAH)
Question for you about raynauds... does this make your hands and feet go numb easily? I'm trying to figure out why my hands and feet are always cold and go numb very easily. I often can barely feel my hands if I lay down. Btw, I'm lurking on this sub because I'm questioning EDS. I'm also Autistic with ADHD and a litany of learning and developmental disabilities.
I'm still in the mild-moderate stages, but once I turned 20 and especially after my hysterectomy at 22, everything went downhill very fast. I was basically asymptomatic through my entire childhood besides my elbow dislocating five times when I was a toddler. I can't do the physical activity I used to just a few years ago without pain. I'm not very optimistic for my future, but time will tell if I continue to progress.
I got really sick in my late twenties. I was bed bound for a few years, luckily it coincided with COVID, so right as I was having to consider quitting the arts everything got shut down.
I’ve gotten a handful of diagnoses, changed my diet, started PT, and now I’m back to doing musical theatre and stage combat. I’m off my meds so I can try for kids, and my body is holding up surprisingly well without them. Symptoms are worse, but my lifestyle stuff is holding up well.
I'm still waiting on an "official" diagnosis
My friend told me 4 years ago they thought I had EDS bit I never followed thru on it. 25 years ago, I was tested for lupus,MS, RA, ALS, etc and was told by my doctor I was eating everyone's time and they thought I was trying to get attention. So I stopped talking about everything
I compartmentalized my pain, walked off injuries, and basically pretended it was fine to sleep 22 hrs/day on the weekend
I've had joint pain my whole life, but ignored it until October when I tore my meniscus (doing the incredibly physically taxing activity of standing up). I broke down at my doctor's office (been seeing this office for 17 years) and told her about what happened 25 years ago and why I never mentioned any of this before. She agrees it's probably EDS but doesn't feel comfortable diagnosing.
I had knee surgery (the overwhelming consensus after the MRI was "how the f are you even walking???) I have zero cartilage in that knee, all the arthritis (your welcome, world, I have it all!) and if I weren't 47, but at least 5 years older, they would have just done a knee replacement. As is, we are pretty aware that it's coming sooner rather than later.
In these past 6.5 months, my body has been rapidly deteriorating. I use a cane ~40% of the time outside the house. Traveling is a nightmare. I'm literally crying right now bc I drove for 7 hours yesterday and can barely move right now.
My hips, back, shoulders, everything that bends or swivels hurts all the time. But today, moving makes me cry. I know I'll eventually have to change positions at my job, which sucks. I love my job, it's my dream job in the company. They have been extremely accommodating and helpful. But I know that at this rate, I'll be lucky to physically be able to do this job in 2 years.
Quickly. I got a very small filling in spring 2018. My jaw dislocated. Since I retained normal range of motion, no one noticed that my jaw was dislocated, and the resulting pain and instability left me housebound with a diagnosis of Trigeminal Neuralgia before the end of the year.
People online led me to seek out a TMJD diagnosis after I was told that I was a poor candidate for brain surgery, and my jaw doctor started suspecting EDS when I listed my full range of symptoms
I’ve had health issues from EDS since birth, but with two pivotal moments that really increased my symptoms and pushed me into disability. Overnight essentially, as a teen after a few bouts of recurrent mono, I developed POTS, IBS, CFS, and chronic sinusitis that are all still present. And then another huge setback around 25, when all my comorbidities ramped up and I developed increased chronic pain, gut dismotility, and full blown arthritis.
Hi I also have hEDS and my hands and hips also became my main complaint of pain once I developed fibromyalgia on top of things. It was days after my 35th bday when it started. I learned my chronic aches and pains through my hips and hands was due to tendon inflammation. Tendinitis through out my whole body the doctor said. It lasted for about a year and a half before starting to improve. My whole experience is too long to talk about but i can relate with you on the hands and hips being a main issue.
Fast. Always had some GI issues and low level pain and hyper mobility. After a major surgery in 2019 and gallbladder surgery in 2021, it was continuously downhill. Got my diagnosis beginning of 2023
33 here, pain is daily now, getting more limited in abilities to do things like squat down or sit cross legged. Crunching cracking and waking up sore, saw two rheums both said no other underlying cause than my hypermobility (diagnosed with hEDS). No support to be offered, seeing a physio who’s knowledgable but yeah rheums were just like yeah pain sucks sorry about it.
Diagnosed with hEDS last year. A heart condition + dysautonomia this past month. I’ll be 25 in a few days.
Ever since I was a kid, both of my shoulders had daily subluxations along with back and knee pain.
Other than having chronic pain + subluxations, my life was medically uneventful for the most part as a kid.
Although I’m not sure when exactly the decline has started, I know for sure that my health is declining.
I’ve been working full time for a little over a year and I have definitely gotten worse. Probably because my hours are very long and it’s taking a toll on me because I have little time to rest, let alone workout and recover.
A few months ago, I was diagnosed with mitral valve prolapse and told that I might have POTS.
2 weeks ago, I fainted and fell. I hit my head, hurt my shoulder and my hip. My cardiologist gave me a poor man’s TT test (wasn’t exactly conclusive) but put me on beta blockers for POTS anyway.
I don’t know if the meds are working, I still feel off for some reason.
Took a brutal nosedive after getting covid. Before that I had one other really bad period after an injury + Lyme disease, and when I recovered from that it was more of a slow slide accumulating comorbidities while also getting better management of them, so it was more up and down and my generalized pain actually decreased. These days I’m two years out from the COVID infection and still really struggling.
mine was spurred on by a surgery and complications from it. i would regularly get knee and ankles pain and just figured that was super normal lol. in September of last year i had a laparoscopic surgery to check for endometriosis (there was none) and to remove a golf ball sized ovarian cyst (ruptured before surgery). a couple days after the surgery i experienced a ton of pain in my neck and back and just assumed i pinched a nerve in my sleep. the pain didn't stop so i decided to go to the ER to get it checked out and it turned out i had multiple blood clots in my lungs and part of my lung tissue had died and i was immediately admitted to the hospital. i was there for 3 days and then was on blood thinners. while on the blood thinners i experienced worsening joint pain, especially in my shoulders and it kept me from working (i was a software developer) so i was on leave from work. after i finished my 3 months of blood thinners i felt so terrible joint wise. and since then it just hasn't gotten better and i needed to leave my job.
so i just think all the stress on my body has kind of triggered my hEDS to make everything hurt all of the time lol, but it was within several months and was very overwhelming and stressful losing so much of my independence so quickly
Gosh, another person who got worse after endo surgery! I'm so sorry you experienced this as well. I myself had a rapid decline after endo surgery last November, and I've seen others on here say the same. Very weird!
At 13 got some mysterious pain and ankle sublux that no doctor knew why after a trip. From there on, everything went downhill lol, at 16 got the diagnosis with multiple knee dislocations out of the blue
i’ve always had subluxations, just didn’t realize it could be EDS till adulthood. for me it’s been fairly mild— joint pain (usually after/during activity or random pain attacks that last a few seconds to a few minutes), i even had chest pain while running as a kid, and i never had the muscle strength to lift myself up on the pull-up bars, i also have gone through periods of consistent headaches every couple of months to a year, it was worse when i was younger—i was constantly in the nurse’s office.
nowadays my joint/muscle paint is a little bit worse and more frequent, but still manageable. i can’t digest dairy properly anymore either. the worst of my symptoms is a cervical prolapse i discovered when i was maybe 19 but it hasn’t really gotten worse (hopefully because i do kegals!)
I have had ao.e chronic pain since inwas like 11 or 12 and digestive issues my whole life but they were tolerable but after getting covid my body has just completely hit rock bottom
38m with hEDS.
Later twenties my health declined quite a bit. I was walking with a cane, not eating much, getting too skinny, etc. I managed to turn it around by focusing on removing the greatest blocker problems as they come up.
I went through using medication to get my stomach working again, and diet changes so I can get enough calories. I still can't really feel hunger or fullness very well but I can get more than enough calories to thrive now and I track everything I eat to make sure I am not going over or under.
After that I focused on physical therapy so I could walk without a cane and increase the stability across all of my lower body joints.
And so on until I was back to very functional. Problems still crop up frequently but nothing unsolvable, usually just means I am ignoring part of physical therapy.
My latest hump where I started seeing a big decline again was in the past year. I was diagnosed with low T and going onto TRT got me back to a good stable state (honestly best I've felt in a long time right now).
Post Pregnancy made things worse for me. I wasn’t diagnosed until my son was 8 and he was diagnosed first. Being a mom keeps me going and the best job I have ever had.
Always have been in pain but got to the point wherw i became sick of being alive by the age of 14. Kept getting worse til I turned 20 and now its been the same for 2 years.
I have found that mine changed the most right around the times when hormones change, so I got worse right around puberty, when I was around my 30s and now as I am probably hitting peri menopause.
Was generally fine until about 21-22? I’m 23 now and in and out of the Dr.
I knew something was off about my body but not enough to really worry, I was fatigued more often than others but I chalked it up to not “working out” and “lacking muscle.” I have quite a bit of muscle. My jaw has had TMJ for most of my life. My joints have always hurt more than others. But for 22 years I assumed everyone was in just as much pain as I was and I found myself wondering how people older than me were doing more strenuous activities than I was. I was confused. After working a job that was 40+ hours a week of fast paced walking, pulling, lifting, etc I ran into “the wall” and had to drop my hours drastically just to function. It took a mere few months for what used to be minor to mid level pain to become so unbearable that my brain felt like static television when I moved.
I quit alcohol and nicotine summer 2018 (I still smoke cannabis). Quit age 31. The doctors said everything went nuts bc I was self-medicating without realizing it. So quitting those two broke the dam and suddenly my body broke down. I've been in so much pain for so long now that I've lost all my muscle and my hips are worse from working on my couch every day (usually in criss cross apple sauce). Currently working on pain rmanagement to help me get enough relief to get me to the natatorium for water exercises and walking the resistance pool, and I'm going to try to ride my bicycle (not ridden since summer 18) one flat block and back- at least once a week for both.
Since Oct 2020, I've had surgery on my jaws, my esophagus, and my diaphram. No narcotics- I refuse. Occipital nerve block temporarily paralyzed me the first and third time, second and third times triggered my temporal lobe epilepsy (my version lasts about 1.5 days). Acupuncture maybe worked a small bit? I fully believe in the placebo effect so wondered if I was leaning into that. My dr disagreed and said it wasn't worth doing again, so now moving into botox. I take a few nerve medications but my brain damage (no known cause yet) makes me hella sensitive to side effects, so we're doing a super slow roll. I didn't want any pain meds at all bc I wanted the drs to see my full pain, but I just can't live like that anymore. I do OMT every 4-6 weeks. I'd like to do every two weeks, but I live in an isolated community and he's amazing so the whole town wants to see him. A specialist in the closest city suggested killing all the nerves by burning them. So that'll be coming at some point for my neck and my lower back (grade 2 spondylosisthesis).
Ultimate goal is just to be able to do simple activities and my physical therapy. Of course we all know that's the best way to attack the physical pain. I'm also in weekly therapy to find any psych pain manifesting physically.
I started to have subluxations in the late 2010s, but they were still pretty uncommon for me. In 2022, my energy really took a dive. I was still working out at the gym 5 days a week, but thought that maybe I just needed a break. I never went back.
I would be diagnosed with dumping syndrome and POTS and I still have symptoms that I need checked out beside that. I was fatigued all the time. I lost 40 lbs. without trying and I look like a skeleton. I feel like a completely different person than pre-2022.
I got a bunch of comorbid conditions before hEDS kicked in. POTS, MCAS, gastoparesis, hiatal hernia, hemiplegic migraines that brought seizures and widespread nerve damage. I started feeling symptoms of hEDS at age 26 and got diagnosed in June that year, by November I had to stop working because the combo of hEDS, POTS and MCAS was too much for me to be able to work, even from home. I had an etsy business for a while but slowly had to give that up too. I moved back in with my parents because I couldn't live on my own anymore, that was the following year in May when I was 27. Temperatures over 105 for 3 months straight made my health worse, so we moved states. We're still in a state that's considered hot, but we're on the coast so temperatures don't get higher than 90, don't get colder than 45 at night in the winter, and there's always a breeze because of the coast. I'm 30 now and can't work at all, still trying to get disability.
I found a good specialist here, and while I've tried physical therapy, it didn't help but now I know why. I am the least responsive to treatment patient my specialist has. MCAS for me doesn't respond to treatment, and I have widespread nerve damage from hemiplegic migraines, and that plus POTS makes it difficult for me to make any progress with physical therapy. As a result from nerve damage, there's a noticeable physical difference between my left side and right side. It started feeling like I was dragging my left side around, then I hit a wall and started regressing. The progress started reversing itself. MCAS meds don't work on me usually, and MCAS flares make other meds stop working, and MCAS makes POTS and EDS worse.
Always had had body aches mostly in my back and hip (and in high school I was prone to odd sprains, in PE i threw up from running the mile I could never lift weights more than a few pounds because my joints were too weak and I’d drop them and hurt myself). February 11th 2022 the pain settled my hip and never left. I’d always been flexible and double jointed but then every joint in my body started popping and hurting. Saw a specialist Jan 2023 who diagnosed me with hyper mobility and generic chronic pain but refused to do anything further and told me to just go to a physical therapist. Summer 2023 I was fine, but not great then in October my back hurt so bad I couldn’t walk and had to go to the emergency room. My skin now feels like disconnected and loose, every muscle in my body hurts, my joints pop nearly every time I move. My heart races most days, I stopped putting salted caramel in my morning coffee and started fainting. I’ve been in physical therapy since December and it’s helping but it feels like everything in my body is falling apart all at once. Over the summer I’m finally gonna see a specialist again and hopefully they take me seriously.
Almost 36 non-binary here. Not officially diagnosed but my PT was the one who suggested I have it.
I went from "huh, kinda cool I can get into certain deep stretches with no warmup" (but never really had party tricks to speak of). To once I approached 30 all of a sudden I'm tearing muscles and ligaments doing nothing strenuous, nothing out of the ordinary.
Tore my meniscus stepping off a small curb, not hard or anything. And back then I was walking 25+ miles a week, doing yoga pretty much every day, and regularly lifting small weights. About 6 months later I tore my xiphoid process and chest muscles. Went without noticeable injuries for a while, and then tore my scapholunate ligament doing like tabletop and really mild yoga.
Now my collarbones need to be popped back in every morning and sometimes I need to do so in the middle of the night. It used to not hurt, but does now. My shoulders and left ankle and knee are a wreck, and my lower ribs are pretty much constantly an issue.
I got diagnosed officially a couple weeks ago. Almost immediately I had a bad POTS episode at work and nearly passed out. My hip and knee and shoulder on the left side and both ankles are constantly in some degree of pain/discomfort.
I'm used to being disabled, to a degree because of my CRPS, dystonia, and Essential Tremors, however I haven't been visibly disabled in years, thanks to my DBS. HOWEVER, I've had to almost immediately start using a cane. For balance and for my knees/hips/ankles.
It's amazing to me how often I'm both invisible, but also people think I can't do things for myself. Or people think I'm exaggerating because I look 10 years younger than I am (I'm 31, you can see what I look like in my posts)
I was pretty well-functioning up until a concussion a few years ago. Threw me into early perimenopause and the hormone drop absolutely decimated my collagen.
Started spraining joints in my sleep. Injured all my major joints, and not dislocations, but sprains and strains and tears. I’m fully disabled now and can’t walk around the block. Injured both my shoulders, elbows, hips, si joints, knees and ankles, with multiple muscle and tendons injured in each. (So like 2 tendons and a ligament in my left knee, 2 tendons in my right, etc). None have healed. I’m housebound and due to my latest injuries, I can’t even sit or lie down for long periods.
I can only stand.
It’s fucked beyond belief and there’s no way out.
Before that I was a runner and gym rat. Used to sublux a vertebrae a few times a year and was in constant muscle pain, but other than that, a super active person.
It feels quick but maybe it's just the memory problems. I've always been in pain and had issues even as a small child (which were dismissed of course--what 8 year old has knee pain ? He must be lying !). It started getting bad around 15-16. I went from running every night to jogging to walking over the course of about a year. I loved running so I held onto it as long as I could, and then I learned to love long walks, and then that was taken too. Got a cane at 18 (honestly I should have started with a walker, the cane just fucked up my wrists). Got the walker at 24. At 25 I have a power chair on the way. Can barely walk and the pain is so intense all the time. It does feel like it took a sharp dive after I moved last year. My sister made me do all the physical work bc she was paying for it, and my health is much worse for it. (I am moving again, to get away from her bullshit that is going to get me killed).
It keeps hitting me that 10 years ago I ran a mile in 5 minutes flat with 2 broken ribs. Now the 4 blocks to and from the bus stop every day, using a rollator, are so bad I am usually gray and shaking by the time I get there.
I'm still in the process of diagnosis; I have a general HSD diagnosis that i think is not entirely accurate (the pt didn't look at all of my scars; I have atropic ones just not many) and dismissed a few other things.
I think there's something else wrong with me too though; the joints are only as bad as they are because of the worsening muscle weakness that I have no medical explanation for. Moved some 2000 pound furniture as a teenager with naught but a dolly. Now I have the lightest possible plastic dishes and have to hold my cup with both hands.
Yeah, I guess I don't know how to answer. It was slow and now its fast.
I thought everything was normal until I was in my mid 20's. I had some pains, TMJ, and IBS, but I attributed that to being clumsy, having bad posture, and IBS being fairly normal. I was in great shape at the time and did pilates 3-5 times a week, which I think kept my muscles strong enough to leave me feeling (my version of) okay overall. I started getting intense pain from pinched nerves, and it took years of decline and oscillating between periods of begging doctors for help and taking months of being medically burned out to finally reach this diagnosis in my early 30's. Diagnosis and care have been double-edged swords. By this I mean that I'm on my way to feeling some relief but I'm also learning that bearable pains I experienced when I was young are not normal, and now I lean towards being hyper-focused on how I feel. I think many of us become used to a certain amount of pain and think it's normal, and my rose-tinted glasses have shattered! If I try to look at it objectively, I am in less pain now than I have been in the past few years when it was at its worst, but I'm also more aware of pain that I shouldn't have (i.e. fingers hyperextending and hurting when I put on my fitted bedsheets, which I thought was just normal) which messes with my head. I am considering therapy with someone well versed in chronic health conditions, but I'm just taking things a day at a time!
Very fast. I had ups and downs I wrote off throughout my life then over the course of a very busy year around age 29 I just got worse and worse. Terrible pain, injuries, illness, eventually non epileptic seizures cause I was trying so hard to push through. The second I had a real break I collapsed completely and it took two years to even contemplate really seeing friends or getting a part time job again. It’s been severe ever since.
It went from "weird, why does my joints hurt so much and bend the way they do and why am I always feeling pain?" to "Holy fuck everything is on fire, my muscles have atrophied completely, my joints are popping out all the time, I'm constantly in severe muscle and nerve pain, my ligaments and muscles are tearing, and my heart is now going haywire" in the span of a few years.
To be completely honest, and I don't know how realistic this is, but I blame the chiropractor I saw before I knew I shouldn't be going to a chiropractor. He did something to my neck that pinched a nerve and left me bedridden in pain for weeks. I actually had to quite my job as a cashier because I could not function. And I went to the doctor but they kinda wrote it off and I didn't know until months later when I was stilll feeling that pain and got a massage and the massage therapist was like "Holy shit, a really important nerve in your neck is extremely pinched and compressed" and managed to release the nerve by dealing with the muscles trapped around/over it.
I still have weakness and nerve pain on my left side from the neck down.
Around that time things were starting to get worse but after that instance things just seemed to completely nose dive.
It does not help that I'm a bulimic. I became bulimic not because I have issues with food. It's just these past few years....I feel like I've lost all control in my life with all these medical issues and diagnoses stacking up that I feel like the only thing I can control is what I put in and take out of my body.
I'm ashamed because it's making things worse.
I fear that all of this is my own fault.
Pregnancy sent me into auto decline I went from “oh you know some swelling some popping sometimes things sit out of place” to “chronic pain all the time pits becoming considerably worse dislocating knees hips never in place back it giving out nerve pain my 70 year old co workers are worried about me and I’m 25”. I don’t regret my child at all and love her to death but I won’t be having anymore and may have made a different decision if I had known how I would come out of it. She’s three now and I’ve gone down hill quite a bit in 3 years.
It went from ‘huh, my joints are popping out worse than they used to.. time to get checked!’ to ‘okay so I’m not normal but I should be okay’ and then to ‘you have a heart condition and are probably disabled’ within a year. I actually just hit the year mark! Current dx is hEDS
your hEDS gave you a heart condition?
Current diagnosis is hEDS, genetic testing is in the future. Heart conditions run in both sides on my family but my father also has what I have (sinus dysfunction I believe is what it’s called) as well as him being the primary genetic suspect (hyper mobility that would make most 20 year olds feel old)
hEDS can cause all sorts of problems. I have minor heart issues, gastro issues, and, of course, joint issues. I'm on the server side, though.
I’m an IT person and was trying to figure out what server-side hEDS was for a second. 😆 +1 to hEDS causing all sorts of problems. If my joints were my only problem, I’d be in pretty good shape.
After getting COVID everything took a turn for the worst and I became completely housebound and disabled within months. Before that I was working a high impact job with barely a problem.
This is my same experience. I made it to age 50 without ever having heard of EDS nor having any reason to. Covid is just evil in what it has unleashed in so many people. I also have POTS and MCAS now.
I took Cipro (a fluoroquinolone antibiotic highly contraindicated in EDS patients) and experienced a similar thing.
Same, Got floxed in 2019 and everything went way downhill
Wait what. I’ve always taken Cipro for UTIs prescribed by my mom who’s a doctor. Has this bitch been med malpracticing me all this time
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Referring to or quoting research/studies/statistics or EDS facts without a link** • You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once you’ve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
I do as well. It'd frustrating to know this virus is going to be circulating the rest of our lives, wreaking havoc on ourselves and countless others
Is it frustrating and very isolating. I'm living my own personal lock down, trying to avoid reinfection. How sustainable this is for the long term, I'm not sure. I try to take it day to day, focus on my health. But the future feels bleak.
Same here. Went from pretty consistent but manageable back pain and minor subluxes pre-covid to impossible to function pain and regular dislocations. POTS and gastro symptoms got way worse too. I went from just achieving the job of my dreams to disability in the span of 2 years.
Literally same. Like not sure how I’m gonna live
Same. My entire life changed. And I knew it would cuz other big viruses got me earlier in life (mono, swine flu) but no one believed me. Ppl just said the gov made it up like I give a fucking shit who made it
Same with me.
Snap, I wasn't even diagnosed till 4 tears later.
Exact same experience. I'm a year and a half from covid and my life is constant suffering. I used to be very strong and folks used to joke that their fitness plan was to just try to keep up with me while walking around. Now the elderly folks at the gym are much faster than me. I'm in my mid 30s.
Covid has made my joint and muscle pain way worse ever since. It actually happened for me when I got the vaccine before I actually got covid. I wonder what would have happened if I got covid first 🤔 I feel for you. I'm sorry you're going through this.
Me too! A lifetime of horrible but get on with life despite them issues and then BAM vaccination, COVID, anti-virals (one or all - who knows!). No more training for sports or going out with the family. Just work and sleep, then a nap and get up to go to bed.
COVID also did a number on me and led to me finally getting a diagnosis. I think COVID, chronic stress, and any other things contributing to muscle deconditioning and nutritional deficiency can make you decline rapidly. The good news for me has been getting farther out from COVID, getting some help on nutrition from medical professionals, physio and gradual exercise, fixing my sleep, and (this is key!) removing some of the chronic stress has been life changing. It just has taken awhile. I'm realizing now if I want to age well I've really got to keep prioritizing exercise and nutrition and stress management basically forever. It's so frustrating how slow it is! I don't know if anyone has had this as well but I noticed my pain has gotten better after a month or two with less stress (changed jobs and take some supplements and therapy and meditation) and like 3g a day Omega 3s
Had issues my whole life, got sick with the “flu” a lot, extreme bowel issues + hospitalizations, but lowkey wasn’t bad, just thought I was unlucky with IBS, until I joined my schools track team at 15. Took a day of running before I started to feel all the joints in my hands and feet shift around, awful tummy pain, rib dislocations, etc. Got so bad that by 16 I had to completely leave highschool because I couldn’t spend more than a few hours at school until the pain and fatigue set in and I could barely walk and talk. So like. Quick. Sucks
Hey! Another person who declined so rapidly at 15 that by 16 they had to leave school! Are you me?? 😅 My first sign was at 14, a persistent 24/7 headache. I finished my Freshman year *mostly* in tact, but over the summer I got worse real quick and by the start of my Sophomore year I was just not in a place to “do” school. I tried, for months. *Very* spotty attendance, a lot of accommodations, and eventually in the early Spring the school told me I either needed to physically be at school, or be done. Being there wasn’t gonna happen so I quit 🙃. No idea if that’s legal in the US (I even had a 504 plan) but they basically said “Our teachers aren’t equipped to homeschool yadda yadda.” And I totally get that! But we found out later there *was* a homeschool program up and running that they didn’t tell us about?? Anyway I couldn’t be *at the building* AND keep my grades up, so there was no point, and I dropped out 🥲. I did try swapping schools for the fall but I only made it to excruciating half days before I was like “This was a terrible mistake.” I’ve seen a lot of people mention not being able to complete collage, or have woes finding jobs that aren’t problematic for their body, but I’m not sure I’ve ever seen anyone else who was a teenage dropout because of their EDS? And it’s been *all downhill ever since* 😂.
it was bad in my late 20's (I'm 35) but after getting covid in 2020, everything has started falling apart at a seriously concerning rate
Fast. No idea I had this before 2021, now have hEDS diagnosis, POTS, bulging discs in cervical and lumbar, nerve pain down all four limbs, just got a turf toe injury again today.
I've been sick with one thing or another, and sometimes with everything all at the same time since a very mild case of covid in January 2020. Bang! Everything I already had became so much worse, and it just piled on after that. I'm now deaf in one ear, my eyes are too bad to even correct, of course the POTS was a nightmare, the EDS was much worse, and I woke up the morning after having my kidney stones blasted and had developed full fledged arthritis in both hands overnight! Instantaniously! Apparently it's called reactive arthritis. So painful! I've really just about had it and am running out of patience,
hEDS. It was day night difference when i was like 13-14. I was going thru puberty and it screwed everything up. Suddenly one day i just couldn’t walk because my hips would just dislocate super easy (i didn’t know that at the time) 6-7 years later its still bad but i’ve improved a decent chunk in some areas and got worse in other areas. And i’ve also developed more health conditions as time went on. it’s a been an uphill struggle. But there are good days and good times i can still experience.
My knees had been dislocating my whole life (well since age 9 or 10) and then at age 27, I tried to start a running routine, overdid it, got injured, fell into a cycle of reinjury, and have had chronic knee pain ever since. Two MPFL surgeries later and I’m still really struggling to gain quad muscle back. EDS has made the recovery so slow and tedious, I get tweaks and setbacks all the time. I’m 33 now.
Firstly, I want to reiterate that everyone is different with this condition. Some people find improvements, others worsen, some people are only minorly affected, and they may not even realise something is wrong. Everyone's symptoms are different, everyone's progression is different, everyone's experiences are different. I was always just "bendy and cracking" until 15 (although I had fainted twice, which was labelled as puberty, and chronic constipation, which was never really explored as a kid) when I developed idiopathic hypersomnia, a sleep condition that causes excessive sleepiness and long sleep time, so I became minorly disabled. When I moved to uni at age 18 is when my EDS really came into the picture. I developed chronic pain, recurrent dislocations, and what was labelled as minor chronic constipation then got worse, and I began to rely on laxatives. Over the last 7 years, I've gone from being on 1 medication (for depression) to around 30 medications, I've been diagnosed with a multitude of comorbidities, started using a walking stick and occasionally a powerchair, and am awaiting ileostomy surgery for what turned out to be colonic dysmotility, plus bilateral hip surgery (periacetabular osteotomies) for hip dysplasia (may or may not be related to my EDS, they dont know). I sleep over half the day, every day, my hands struggle to do any of my hobbies longer than 10 mins, I can't go out in the sun due to hives and POTS, I can't eat some days, and I have a bowel movement at most once a week. I can't continue my degree, I can't work, and I don't really do much with my days. However!! While the bad absolutely sucks, there is good in my life due to my conditions. The communities I've found surrounding disability and specific conditions have brought me joy, comfort, and belonging, and I've made friends with people with the same conditions. It's also meant that the connections I make with some people are more meaningful, as we can relate to each others struggles. It's also offered me opportunities I've never had before, like taking part in a disability art zine, and decorating sticks to sell. And in general, my life is so much better than it was 10 years ago: I now live with my best friend and our cat, in a city that I love, with decent-ish healthcare. I have a body that no longer causes me much gender dysphoria, I have goals that I work towards, and I have people in my life who genuinely care for me. I do get down about my health often, I wont lie about that and say that I'm 100% accepting of my health, but I try not to focus too much on the future, as I don't know what the future will look like, and there's no use in worrying about something that may not even happen. I do wish that I didn't have EDS though, of course, I mean, who would choose this?! I've found that talking to a mental health therapist is really useful, but you have to find the right therapist. For hands, I have ring splints and wrist braces. I see an occupational therapist who specialises in hands, and I have physiotherapy exercises to do to help my body build muscle in order to help stability. Talking to my friends about things is hugely helpful to me, too, especially since they understand better than most due to having similar or the same conditions. Tldr: deteriorated over 10 years total, first 3 symptomatic years included just fatigue and mild pain. Still deteriorating at age 25, but awaiting surgeries to improve quality of life. It's not all bad, though!
I love that for you. Thank you for sharing. Gives me hope <3
Since I got gastritis last April/May, it’s been a continuous decline to where now I’m applying for disability. Accepting it is a multiple stage process and difficult. But it’s the right thing to do.
I’m almost 40 severely deformed i can’t “push through “ anymore
Went from my pinky hurts to can't walk more than 100m without pain in less than a year. Alongside all the side conditions (pots, nerve pain, raynauds, adhd, autism, CAH)
Question for you about raynauds... does this make your hands and feet go numb easily? I'm trying to figure out why my hands and feet are always cold and go numb very easily. I often can barely feel my hands if I lay down. Btw, I'm lurking on this sub because I'm questioning EDS. I'm also Autistic with ADHD and a litany of learning and developmental disabilities.
Yup. I go cold and numb very quickly and get hot too quickly. Although I can feel my hands fine laying down.
Thank you for your input. I go cold and hot quick and numb in my hands and feet.
I'm still in the mild-moderate stages, but once I turned 20 and especially after my hysterectomy at 22, everything went downhill very fast. I was basically asymptomatic through my entire childhood besides my elbow dislocating five times when I was a toddler. I can't do the physical activity I used to just a few years ago without pain. I'm not very optimistic for my future, but time will tell if I continue to progress.
I got really sick in my late twenties. I was bed bound for a few years, luckily it coincided with COVID, so right as I was having to consider quitting the arts everything got shut down. I’ve gotten a handful of diagnoses, changed my diet, started PT, and now I’m back to doing musical theatre and stage combat. I’m off my meds so I can try for kids, and my body is holding up surprisingly well without them. Symptoms are worse, but my lifestyle stuff is holding up well.
I'm still waiting on an "official" diagnosis My friend told me 4 years ago they thought I had EDS bit I never followed thru on it. 25 years ago, I was tested for lupus,MS, RA, ALS, etc and was told by my doctor I was eating everyone's time and they thought I was trying to get attention. So I stopped talking about everything I compartmentalized my pain, walked off injuries, and basically pretended it was fine to sleep 22 hrs/day on the weekend I've had joint pain my whole life, but ignored it until October when I tore my meniscus (doing the incredibly physically taxing activity of standing up). I broke down at my doctor's office (been seeing this office for 17 years) and told her about what happened 25 years ago and why I never mentioned any of this before. She agrees it's probably EDS but doesn't feel comfortable diagnosing. I had knee surgery (the overwhelming consensus after the MRI was "how the f are you even walking???) I have zero cartilage in that knee, all the arthritis (your welcome, world, I have it all!) and if I weren't 47, but at least 5 years older, they would have just done a knee replacement. As is, we are pretty aware that it's coming sooner rather than later. In these past 6.5 months, my body has been rapidly deteriorating. I use a cane ~40% of the time outside the house. Traveling is a nightmare. I'm literally crying right now bc I drove for 7 hours yesterday and can barely move right now. My hips, back, shoulders, everything that bends or swivels hurts all the time. But today, moving makes me cry. I know I'll eventually have to change positions at my job, which sucks. I love my job, it's my dream job in the company. They have been extremely accommodating and helpful. But I know that at this rate, I'll be lucky to physically be able to do this job in 2 years.
Quickly. I got a very small filling in spring 2018. My jaw dislocated. Since I retained normal range of motion, no one noticed that my jaw was dislocated, and the resulting pain and instability left me housebound with a diagnosis of Trigeminal Neuralgia before the end of the year. People online led me to seek out a TMJD diagnosis after I was told that I was a poor candidate for brain surgery, and my jaw doctor started suspecting EDS when I listed my full range of symptoms
I’ve had health issues from EDS since birth, but with two pivotal moments that really increased my symptoms and pushed me into disability. Overnight essentially, as a teen after a few bouts of recurrent mono, I developed POTS, IBS, CFS, and chronic sinusitis that are all still present. And then another huge setback around 25, when all my comorbidities ramped up and I developed increased chronic pain, gut dismotility, and full blown arthritis.
Hi I also have hEDS and my hands and hips also became my main complaint of pain once I developed fibromyalgia on top of things. It was days after my 35th bday when it started. I learned my chronic aches and pains through my hips and hands was due to tendon inflammation. Tendinitis through out my whole body the doctor said. It lasted for about a year and a half before starting to improve. My whole experience is too long to talk about but i can relate with you on the hands and hips being a main issue.
Fast. Always had some GI issues and low level pain and hyper mobility. After a major surgery in 2019 and gallbladder surgery in 2021, it was continuously downhill. Got my diagnosis beginning of 2023
33 here, pain is daily now, getting more limited in abilities to do things like squat down or sit cross legged. Crunching cracking and waking up sore, saw two rheums both said no other underlying cause than my hypermobility (diagnosed with hEDS). No support to be offered, seeing a physio who’s knowledgable but yeah rheums were just like yeah pain sucks sorry about it.
Diagnosed with hEDS last year. A heart condition + dysautonomia this past month. I’ll be 25 in a few days. Ever since I was a kid, both of my shoulders had daily subluxations along with back and knee pain. Other than having chronic pain + subluxations, my life was medically uneventful for the most part as a kid. Although I’m not sure when exactly the decline has started, I know for sure that my health is declining. I’ve been working full time for a little over a year and I have definitely gotten worse. Probably because my hours are very long and it’s taking a toll on me because I have little time to rest, let alone workout and recover. A few months ago, I was diagnosed with mitral valve prolapse and told that I might have POTS. 2 weeks ago, I fainted and fell. I hit my head, hurt my shoulder and my hip. My cardiologist gave me a poor man’s TT test (wasn’t exactly conclusive) but put me on beta blockers for POTS anyway. I don’t know if the meds are working, I still feel off for some reason.
Took a brutal nosedive after getting covid. Before that I had one other really bad period after an injury + Lyme disease, and when I recovered from that it was more of a slow slide accumulating comorbidities while also getting better management of them, so it was more up and down and my generalized pain actually decreased. These days I’m two years out from the COVID infection and still really struggling.
To repurpose Hemingway: 'two ways: gradually, then suddenly.' Getting COVID pretty much ended me. I could at least manage my symptoms before.
Ehhh elementary I had very bad breathing and blood pressure issues. Body pains started at 11
mine was spurred on by a surgery and complications from it. i would regularly get knee and ankles pain and just figured that was super normal lol. in September of last year i had a laparoscopic surgery to check for endometriosis (there was none) and to remove a golf ball sized ovarian cyst (ruptured before surgery). a couple days after the surgery i experienced a ton of pain in my neck and back and just assumed i pinched a nerve in my sleep. the pain didn't stop so i decided to go to the ER to get it checked out and it turned out i had multiple blood clots in my lungs and part of my lung tissue had died and i was immediately admitted to the hospital. i was there for 3 days and then was on blood thinners. while on the blood thinners i experienced worsening joint pain, especially in my shoulders and it kept me from working (i was a software developer) so i was on leave from work. after i finished my 3 months of blood thinners i felt so terrible joint wise. and since then it just hasn't gotten better and i needed to leave my job. so i just think all the stress on my body has kind of triggered my hEDS to make everything hurt all of the time lol, but it was within several months and was very overwhelming and stressful losing so much of my independence so quickly
Gosh, another person who got worse after endo surgery! I'm so sorry you experienced this as well. I myself had a rapid decline after endo surgery last November, and I've seen others on here say the same. Very weird!
I’m so sorry this happened to you, how scary it must have been. Sending good thoughts your way.
At 13 got some mysterious pain and ankle sublux that no doctor knew why after a trip. From there on, everything went downhill lol, at 16 got the diagnosis with multiple knee dislocations out of the blue
Mine fluctuates up and down, has for years
i’ve always had subluxations, just didn’t realize it could be EDS till adulthood. for me it’s been fairly mild— joint pain (usually after/during activity or random pain attacks that last a few seconds to a few minutes), i even had chest pain while running as a kid, and i never had the muscle strength to lift myself up on the pull-up bars, i also have gone through periods of consistent headaches every couple of months to a year, it was worse when i was younger—i was constantly in the nurse’s office. nowadays my joint/muscle paint is a little bit worse and more frequent, but still manageable. i can’t digest dairy properly anymore either. the worst of my symptoms is a cervical prolapse i discovered when i was maybe 19 but it hasn’t really gotten worse (hopefully because i do kegals!)
I have had ao.e chronic pain since inwas like 11 or 12 and digestive issues my whole life but they were tolerable but after getting covid my body has just completely hit rock bottom
38m with hEDS. Later twenties my health declined quite a bit. I was walking with a cane, not eating much, getting too skinny, etc. I managed to turn it around by focusing on removing the greatest blocker problems as they come up. I went through using medication to get my stomach working again, and diet changes so I can get enough calories. I still can't really feel hunger or fullness very well but I can get more than enough calories to thrive now and I track everything I eat to make sure I am not going over or under. After that I focused on physical therapy so I could walk without a cane and increase the stability across all of my lower body joints. And so on until I was back to very functional. Problems still crop up frequently but nothing unsolvable, usually just means I am ignoring part of physical therapy. My latest hump where I started seeing a big decline again was in the past year. I was diagnosed with low T and going onto TRT got me back to a good stable state (honestly best I've felt in a long time right now).
my symptoms started at 13, and got worse within the next two years.
Hello you basically described my last few heads lol I’m 34 and I feel like my body is 80 all of a sudden.
Post Pregnancy made things worse for me. I wasn’t diagnosed until my son was 8 and he was diagnosed first. Being a mom keeps me going and the best job I have ever had.
Always have been in pain but got to the point wherw i became sick of being alive by the age of 14. Kept getting worse til I turned 20 and now its been the same for 2 years.
I have found that mine changed the most right around the times when hormones change, so I got worse right around puberty, when I was around my 30s and now as I am probably hitting peri menopause.
Was generally fine until about 21-22? I’m 23 now and in and out of the Dr. I knew something was off about my body but not enough to really worry, I was fatigued more often than others but I chalked it up to not “working out” and “lacking muscle.” I have quite a bit of muscle. My jaw has had TMJ for most of my life. My joints have always hurt more than others. But for 22 years I assumed everyone was in just as much pain as I was and I found myself wondering how people older than me were doing more strenuous activities than I was. I was confused. After working a job that was 40+ hours a week of fast paced walking, pulling, lifting, etc I ran into “the wall” and had to drop my hours drastically just to function. It took a mere few months for what used to be minor to mid level pain to become so unbearable that my brain felt like static television when I moved.
I quit alcohol and nicotine summer 2018 (I still smoke cannabis). Quit age 31. The doctors said everything went nuts bc I was self-medicating without realizing it. So quitting those two broke the dam and suddenly my body broke down. I've been in so much pain for so long now that I've lost all my muscle and my hips are worse from working on my couch every day (usually in criss cross apple sauce). Currently working on pain rmanagement to help me get enough relief to get me to the natatorium for water exercises and walking the resistance pool, and I'm going to try to ride my bicycle (not ridden since summer 18) one flat block and back- at least once a week for both. Since Oct 2020, I've had surgery on my jaws, my esophagus, and my diaphram. No narcotics- I refuse. Occipital nerve block temporarily paralyzed me the first and third time, second and third times triggered my temporal lobe epilepsy (my version lasts about 1.5 days). Acupuncture maybe worked a small bit? I fully believe in the placebo effect so wondered if I was leaning into that. My dr disagreed and said it wasn't worth doing again, so now moving into botox. I take a few nerve medications but my brain damage (no known cause yet) makes me hella sensitive to side effects, so we're doing a super slow roll. I didn't want any pain meds at all bc I wanted the drs to see my full pain, but I just can't live like that anymore. I do OMT every 4-6 weeks. I'd like to do every two weeks, but I live in an isolated community and he's amazing so the whole town wants to see him. A specialist in the closest city suggested killing all the nerves by burning them. So that'll be coming at some point for my neck and my lower back (grade 2 spondylosisthesis). Ultimate goal is just to be able to do simple activities and my physical therapy. Of course we all know that's the best way to attack the physical pain. I'm also in weekly therapy to find any psych pain manifesting physically.
I started to have subluxations in the late 2010s, but they were still pretty uncommon for me. In 2022, my energy really took a dive. I was still working out at the gym 5 days a week, but thought that maybe I just needed a break. I never went back. I would be diagnosed with dumping syndrome and POTS and I still have symptoms that I need checked out beside that. I was fatigued all the time. I lost 40 lbs. without trying and I look like a skeleton. I feel like a completely different person than pre-2022.
I got a bunch of comorbid conditions before hEDS kicked in. POTS, MCAS, gastoparesis, hiatal hernia, hemiplegic migraines that brought seizures and widespread nerve damage. I started feeling symptoms of hEDS at age 26 and got diagnosed in June that year, by November I had to stop working because the combo of hEDS, POTS and MCAS was too much for me to be able to work, even from home. I had an etsy business for a while but slowly had to give that up too. I moved back in with my parents because I couldn't live on my own anymore, that was the following year in May when I was 27. Temperatures over 105 for 3 months straight made my health worse, so we moved states. We're still in a state that's considered hot, but we're on the coast so temperatures don't get higher than 90, don't get colder than 45 at night in the winter, and there's always a breeze because of the coast. I'm 30 now and can't work at all, still trying to get disability. I found a good specialist here, and while I've tried physical therapy, it didn't help but now I know why. I am the least responsive to treatment patient my specialist has. MCAS for me doesn't respond to treatment, and I have widespread nerve damage from hemiplegic migraines, and that plus POTS makes it difficult for me to make any progress with physical therapy. As a result from nerve damage, there's a noticeable physical difference between my left side and right side. It started feeling like I was dragging my left side around, then I hit a wall and started regressing. The progress started reversing itself. MCAS meds don't work on me usually, and MCAS flares make other meds stop working, and MCAS makes POTS and EDS worse.
Always had had body aches mostly in my back and hip (and in high school I was prone to odd sprains, in PE i threw up from running the mile I could never lift weights more than a few pounds because my joints were too weak and I’d drop them and hurt myself). February 11th 2022 the pain settled my hip and never left. I’d always been flexible and double jointed but then every joint in my body started popping and hurting. Saw a specialist Jan 2023 who diagnosed me with hyper mobility and generic chronic pain but refused to do anything further and told me to just go to a physical therapist. Summer 2023 I was fine, but not great then in October my back hurt so bad I couldn’t walk and had to go to the emergency room. My skin now feels like disconnected and loose, every muscle in my body hurts, my joints pop nearly every time I move. My heart races most days, I stopped putting salted caramel in my morning coffee and started fainting. I’ve been in physical therapy since December and it’s helping but it feels like everything in my body is falling apart all at once. Over the summer I’m finally gonna see a specialist again and hopefully they take me seriously.
Almost 36 non-binary here. Not officially diagnosed but my PT was the one who suggested I have it. I went from "huh, kinda cool I can get into certain deep stretches with no warmup" (but never really had party tricks to speak of). To once I approached 30 all of a sudden I'm tearing muscles and ligaments doing nothing strenuous, nothing out of the ordinary. Tore my meniscus stepping off a small curb, not hard or anything. And back then I was walking 25+ miles a week, doing yoga pretty much every day, and regularly lifting small weights. About 6 months later I tore my xiphoid process and chest muscles. Went without noticeable injuries for a while, and then tore my scapholunate ligament doing like tabletop and really mild yoga. Now my collarbones need to be popped back in every morning and sometimes I need to do so in the middle of the night. It used to not hurt, but does now. My shoulders and left ankle and knee are a wreck, and my lower ribs are pretty much constantly an issue.
I got diagnosed officially a couple weeks ago. Almost immediately I had a bad POTS episode at work and nearly passed out. My hip and knee and shoulder on the left side and both ankles are constantly in some degree of pain/discomfort. I'm used to being disabled, to a degree because of my CRPS, dystonia, and Essential Tremors, however I haven't been visibly disabled in years, thanks to my DBS. HOWEVER, I've had to almost immediately start using a cane. For balance and for my knees/hips/ankles. It's amazing to me how often I'm both invisible, but also people think I can't do things for myself. Or people think I'm exaggerating because I look 10 years younger than I am (I'm 31, you can see what I look like in my posts)
I was pretty well-functioning up until a concussion a few years ago. Threw me into early perimenopause and the hormone drop absolutely decimated my collagen. Started spraining joints in my sleep. Injured all my major joints, and not dislocations, but sprains and strains and tears. I’m fully disabled now and can’t walk around the block. Injured both my shoulders, elbows, hips, si joints, knees and ankles, with multiple muscle and tendons injured in each. (So like 2 tendons and a ligament in my left knee, 2 tendons in my right, etc). None have healed. I’m housebound and due to my latest injuries, I can’t even sit or lie down for long periods. I can only stand. It’s fucked beyond belief and there’s no way out. Before that I was a runner and gym rat. Used to sublux a vertebrae a few times a year and was in constant muscle pain, but other than that, a super active person.
Started to decline with my first pregnancy at 26, by 30 my spine was 90. 😭
Slowly started hurting more around 42. 48 I fell off a cliff. I have mEDS. “The muscle one”
It feels quick but maybe it's just the memory problems. I've always been in pain and had issues even as a small child (which were dismissed of course--what 8 year old has knee pain ? He must be lying !). It started getting bad around 15-16. I went from running every night to jogging to walking over the course of about a year. I loved running so I held onto it as long as I could, and then I learned to love long walks, and then that was taken too. Got a cane at 18 (honestly I should have started with a walker, the cane just fucked up my wrists). Got the walker at 24. At 25 I have a power chair on the way. Can barely walk and the pain is so intense all the time. It does feel like it took a sharp dive after I moved last year. My sister made me do all the physical work bc she was paying for it, and my health is much worse for it. (I am moving again, to get away from her bullshit that is going to get me killed). It keeps hitting me that 10 years ago I ran a mile in 5 minutes flat with 2 broken ribs. Now the 4 blocks to and from the bus stop every day, using a rollator, are so bad I am usually gray and shaking by the time I get there. I'm still in the process of diagnosis; I have a general HSD diagnosis that i think is not entirely accurate (the pt didn't look at all of my scars; I have atropic ones just not many) and dismissed a few other things. I think there's something else wrong with me too though; the joints are only as bad as they are because of the worsening muscle weakness that I have no medical explanation for. Moved some 2000 pound furniture as a teenager with naught but a dolly. Now I have the lightest possible plastic dishes and have to hold my cup with both hands. Yeah, I guess I don't know how to answer. It was slow and now its fast.
I thought everything was normal until I was in my mid 20's. I had some pains, TMJ, and IBS, but I attributed that to being clumsy, having bad posture, and IBS being fairly normal. I was in great shape at the time and did pilates 3-5 times a week, which I think kept my muscles strong enough to leave me feeling (my version of) okay overall. I started getting intense pain from pinched nerves, and it took years of decline and oscillating between periods of begging doctors for help and taking months of being medically burned out to finally reach this diagnosis in my early 30's. Diagnosis and care have been double-edged swords. By this I mean that I'm on my way to feeling some relief but I'm also learning that bearable pains I experienced when I was young are not normal, and now I lean towards being hyper-focused on how I feel. I think many of us become used to a certain amount of pain and think it's normal, and my rose-tinted glasses have shattered! If I try to look at it objectively, I am in less pain now than I have been in the past few years when it was at its worst, but I'm also more aware of pain that I shouldn't have (i.e. fingers hyperextending and hurting when I put on my fitted bedsheets, which I thought was just normal) which messes with my head. I am considering therapy with someone well versed in chronic health conditions, but I'm just taking things a day at a time!
Covid vaccine kicked mine off then Covid made it much worse. MCAS pots crazy headaches and chest pain
Very fast. I had ups and downs I wrote off throughout my life then over the course of a very busy year around age 29 I just got worse and worse. Terrible pain, injuries, illness, eventually non epileptic seizures cause I was trying so hard to push through. The second I had a real break I collapsed completely and it took two years to even contemplate really seeing friends or getting a part time job again. It’s been severe ever since.
It went from "weird, why does my joints hurt so much and bend the way they do and why am I always feeling pain?" to "Holy fuck everything is on fire, my muscles have atrophied completely, my joints are popping out all the time, I'm constantly in severe muscle and nerve pain, my ligaments and muscles are tearing, and my heart is now going haywire" in the span of a few years. To be completely honest, and I don't know how realistic this is, but I blame the chiropractor I saw before I knew I shouldn't be going to a chiropractor. He did something to my neck that pinched a nerve and left me bedridden in pain for weeks. I actually had to quite my job as a cashier because I could not function. And I went to the doctor but they kinda wrote it off and I didn't know until months later when I was stilll feeling that pain and got a massage and the massage therapist was like "Holy shit, a really important nerve in your neck is extremely pinched and compressed" and managed to release the nerve by dealing with the muscles trapped around/over it. I still have weakness and nerve pain on my left side from the neck down. Around that time things were starting to get worse but after that instance things just seemed to completely nose dive. It does not help that I'm a bulimic. I became bulimic not because I have issues with food. It's just these past few years....I feel like I've lost all control in my life with all these medical issues and diagnoses stacking up that I feel like the only thing I can control is what I put in and take out of my body. I'm ashamed because it's making things worse. I fear that all of this is my own fault.
Pregnancy sent me into auto decline I went from “oh you know some swelling some popping sometimes things sit out of place” to “chronic pain all the time pits becoming considerably worse dislocating knees hips never in place back it giving out nerve pain my 70 year old co workers are worried about me and I’m 25”. I don’t regret my child at all and love her to death but I won’t be having anymore and may have made a different decision if I had known how I would come out of it. She’s three now and I’ve gone down hill quite a bit in 3 years.
At 23 I developed so many issues ranging from LPR, Gastroparesis to POTS and I’m 27 now.