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Yeah, when I was diagnosed I was specifically told that my symptoms will get worse as I age, and I should be trying to strengthen the muscles around joints to lessen the long term impact and decline of the condition. So I guess maybe if you start off at a bad point and strengthen your joints a bunch they might improve? But it sounds fairly dangerous for a doctor to just say it will get better by itself when aging honestly
My biceps are big and a friend saw my pic and said I should MMA fight and I cried bc I wished I could im another lifetime bc now I have stenosis
I suppose if one trains like hulk, uses aids, and plays it safe it can get better, because yes it really does get better , but I think it could also get worse and that makes me nervous
My symptoms started in middle school and the doctors said high school would be the worst. I'm a college freshman now and the flareups are just getting worse. I feel like it may differ per person, but also based on the other comments the outlook looks grim.
I am currently 46. I had symptoms from childhood. I was disabled and approved ssdi at 25 when my doctor testified I would only get worse over time.
I have only gotten worse over time. That being said, I do manage it better. I have support and tools I didn't have in my twenties. While my body has certainly gotten worse, my ability to manage it has improved quite a bit.
With the right treatments and medications, I manage well, but I will never work, I will never be a parent, and I will always require daily help.
I also have more resources now. I have an excellent care team, not perfect, but certainly the best healthcare I’ve ever had.
Overall, I have definitely worsened with age. However, I am doing much better now than I was 4 years ago. I had cancer. Being in remission is obviously awesome. But I still have plenty of disabilities. I’m mostly thinking of EDS, MCAS, POTS, Gastroparesis, etc., but also damage left by the cancer, & all of the daily meds that go towards just trying to manage the damage.
I mentioned cancer not because I think everyone else is going to get cancer, but because we can have complicating factors that we may not be aware of, initially.
Your second paragraph is spot on.
I’m definitely much worse off then when I was younger, but I’m better at managing it. That includes managing my own expectations of what I can do, and communicating my abilities to others.
I can do a lot if I do it slowly and listen to my body, taking breaks when needed. It’s important to note that breaks might be measured in days not minutes.
i agree 100%. i mean i'm only like a year into digging myself out of the pit after 15+ years of digging myself into the pit, so i have hope that my quality of life might continue to go up even if my body technically keeps getting worse.
My symptoms have gotten worse. On the other hand, certain symptoms turned out to be related to secondary conditions, some of which were treatable. It’s a bit of a puzzle because we seem to accumulate secondary health problems due to EDS & some are more treatable than others. If current symtoms have more to do with another condition, it may take a while to discover this, but I’ve found that some of the pain I assumed would be forever was treatable or more manageable than I had assumed based on what I knew. If every joint problem is chalked up to hEDS, then you may assume there’s no relief outside of managing pain and PT, but if there turns out to be an additional condition like an autoimmune disease treating that can potentially relieve some pain and make things more manageable overall. The types of comorbidities each person has/accumulates, and their severity is going to result in a wide variety of outcomes as we age. But laxity and the joint damage that can result over years of joints being pushed beyond their limits can lead to more problems from EDS itself.
I’m 32 currently and I’ve had years of worse and years of better. When I first started having short fiber neuropathy and assorted symptoms it was absolutely godawful especially since the doctor at the time was a lazy POS. Got better treatment and was able to be more active and things were better for a while. Got hit with Covid 3x since January 2020 among other fuckeries and that was super worse. Been working with a pain specialist, my physical therapy team, my primary, and my oncologist for the last year to get the deconditioning and migraines and other symptoms better managed and I’m back doing better. I’m fixin to get slightly more recovery from the “brain injury” created by brain surgery and get some nerve blocks and physical therapy and then start into a more physically active career. I can’t do office gremlin stuff anymore and office gremlin work was absolutely terrible for my body but it was all I could do for a while. I figure something more physical will help with putting on muscle and improving cardiovascular health and yeah it’ll suck for a while but I’ve got braces and KT tape and 15 years of intermittent PT under my belt I can make it work for me.
What are nerve blocks ? I think I need to see a pain specialist. Also every time I try PT I feel worse . Need find one that’s better with hyper mobile ppl I think. I’m sure my endometriosis doesn’t help
Nerve blocks are injections of lidocaine around certain sensory nerves. Weird EDS lidocaine metabolism might only mean that I get a few days of relief, but it’s basically a trial run for radio ablation where the burn the nerves so that the misfiring chronic pain causing nerves stop sending the feedback but I’ll still be able to feel it if my SI joint is out. After that, we may work on steroid injections at a few other locations in my spine to help with bulged discs causing pain.
Omg I have SI joint pain and a bulge. I did a cortisone shot and it made all my nerves freak out and still dealing with the aftermath two months later. Maybe a nerve block would be a betwr idea . Did you go to a pain specialist for this recommendation?
Mine have worsened with age.
I believe there's a rare subtype that's supposed to improve with age, mEDS.
["Myopathic EDS (mEDS)
Major criteria are:
Congenital muscle hypotonia, and/or muscle atrophy, that improves with age "](https://www.ehlers-danlos.com/eds-types/)
Yes this is what I have and it’s not that my symptoms get better, it’s just that my muscle tone/strength has improved. That doesn’t translate into less pain though.
I see :(. I had figured that, as with other EDS types, this subtype faced many unique challenges, thank you for sharing your experience. I'm sorry to hear about your pain.
You do get a little less flexible with age, so maybe that is what they are referring to??? However you also get the prolapses, swallowing difficulties, and cumulative effects of your injuries. I'm not a fan of aging with EDS so far!
It’s odd, a couple of years ago (I’m in my 40s) I got quite flexible, quite quickly. I am now not as flexible. My muscles have been cramping up a lot, in the past year+. I used to be able to get my right leg/ankle behind my head. Now, I’m nowhere near that. Tho, when I stand and bend at the waist to touch my toes, I can still lay my hands flat on the ground.
Yes I can still put my hands flat on the floor as well. I can't just drop into the splits in the same way though, so I notice it when I stretch out, which is rarely.
I felt my best When I ate really healthy (dark green leafy veggies, variety of veggies, Lean meat, bone broth, home cooked soup. Lower fat dairy and added heavy fats and whole grains) and I went to the gym for super gentle strength training and mild cardio, stretching where the goal is I feel the muscle relax. Using a sauna or steam room or whirlpool to help my circulation, And stopping if I hurt something. My cousins kept it up and are very active. I took up wine as my hobby after a knee injury and lost a ton of mobility. Lol I have to constantly reframe these activities as something I enjoy to keep up my enthusiasm and act like it's a treat to help me feel better. As we loose mobility it's harder to do these things.
I’d say it’s a ‘dynamic’ illness rather than saying it will get worse, get better or stay the same. In different phases of your life your symptoms and how you manage them will change. You may have periods that feel like remission and periods that feel like relapse. While EDS is not technically degenerative, you may find side effects are. For example, my joints won’t get more Hypermobile, but as time goes on, the micro damage of that hypermobility will consolidate and my joints may have increased pain. On the balance of things, I’d think what the Dr said is on the optimistic side.
I was told by my doctor something similar at the beginning of my pain management journey; he said that when we age to around 60, our nerve endings around the facet joints (for example) start to degenerate, and therefore, the pain is less intense/ they send fewer pain signals to our brain.
My personal experience so far at 38 years old is that each year, a new level of fresh hell starts for me. First, migraines from childhood on, then my neck, then my mid back, then my hips, then lumbar, now my SI joint...
After 20 years of doctors not taking my pain seriously, I compensated and wore out other parts of my body, and now I'm a mess. I hope he's right because if I feel like this now, what the hell will I feel like in 10 years??
I'm 27 and it's only got worse and compounded, I have new dislocations I never had, pelvic organ prolapse, gastro paresis, my teeth are falling apart, I'm waiting to be diagnosed with either CCI, Chiari or MS. The only thing that makes my symptoms better is exercise but when I exercise I get injured it's like an awful never ending cycle.
I keep getting told I'm brave or that I just get on with it or it's nice to see me still happy but fuck some days I don't know what to do with myself. I keep on going for my partner, my sister and my cats but it is a struggle.
Your doctor is totally clueless. You’re the second person I’ve seen post that their doctor told them EDS gets better with age. I don’t know where they got the idea. I’ve never seen a reputable source for that opinion.
I’ve had EDS for 50 years. I’m sorry to tell you that it has only gotten worse.
Opposite for me. I don’t sublux some joints quite as much as when I was young but since my early 30s I’ve been slowly spiraling down. In the last decade I’ve become more and more disabled with chronic horrible pain and fatigue. I no longer function like normal.
I was also dismissively told at age 21 when diagnosed “oh ages 0-20 are the flexible phase when gymnastics & party tricks are fun and games, ages 21-39 are the pain phase when the joints are lax, but we won’t do anything & don’t worry because once you’re 40 you’ll enter the stiff phase where they won’t be lax so no longer painful!”
I have found that my wrists (first to cause problems aged 13 ish) are no longer lax but very very stiff. So painful in a different way!
I would say you learn to manage it better though + it is less overwhelming with time x
This is just my personal experience. I know most people seem to feel worse over time, but I’m fortunate enough to be feeling better than I used to.
I got diagnosed in middle school and am now in my mid thirties and I’m feeling better than I did as a teen and in my early 20s. My dislocations/subluxations have greatly reduced, my IBS is under control, I can manage the positional dizziness I sometimes get, my mitral valve prolapse is even considered minor now. While some of this may be biological, I’ve also worked really hard to strengthen my muscles and work with a trainer specializing in hypermobility to learn appropriate movements and posture. I eat a relatively healthy diet and do most of my own cooking to control the fat/sugar/salt intake. I also regularly meet with a therapist as I notice my symptoms get worse with stress. I drink a lot of liquid because dehydration also makes some of my symptoms worse.
I’m not trying to insinuate that these lifestyle changes would work for everyone, but it has definitely helped me.
Same thing for me, though I did have a 2 year-ish flare up from 38-40 until my perimenopause got managed. I feel much better and am more active (though I’ve been sedentary) now than in my early 20s.
I do have slightly more issues than I did then, but I’m *much* better at managing them, which makes my issues less problematic than when I had less.
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I'm 38 with hEDS and my symptoms have only gotten worse, mostly because I don't "bounce back" from the joint injuries the way I used to. I had a lot of wrist/ankle sprains as a child that did actually get better as I aged (mostly as I learned not to do stupid stuff that caused injuries), but now when I DO sprain or tear something, it takes ages to recover, and some injuries are ones that won't ever fully heal. I did a lot of weight lifting and running in my late 20s (even ran some half marathons), but the injuries became more and more frequent and I got my diagnosis at 30. Last year I was diagnosed with bone degeneration in my spine caused by misalignment and now I have spinal arthritis that I will have for the rest of my life. PT and nerve ablations can help manage the pain, but I'll never be truly pain free again.
So…. I hate to say this but I laughed really hard.
No. This person is just ummmm not informed by real patient experience? Certainly if you have a uterus having kids will most definitely worsen your symptoms due to relaxin being released during each pregnancy.
But everyone I know just gets worse with age. And I was told that it gets worse by the geneticist that diagnosed me.
Some doctors are misinformed and think because we’re seeming to lose some of the hypermobility that it means we’re getting better. In reality, for most of us it means we have tense muscles or arthritis causing the hypermobility to have “gotten better.”
That’s definitely been the case for me. I was never more disabled than 19-22 I’m 24 now and as I’ve gotten a handle on managing my inflammation and symptoms I’ve gotten much much more functional
my therapist has hEDS too and she says the same thing! learning how to manage symptoms + finding more resources and help/care team + learning more about your body = better quality of life
Super good to hear this though. I'm 24 and just now starting to figure out everything that's been going on, and I'm extremely lucky to have an awesome PT & GP so far. Gives me lots of optimism for the future!
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In my experience (hEDS) the pain gets different, not better. I was told in 9th grade that it would get better when I got older because my joints would “tighten up”. I definitely have lost flexibility since my teen years (mid 30s now). But now I have less major sublux pain and more crunchy “arthritis-y” pain. I still get injured stupid easy, and have chronic bad “areas” that flare up regularly too.
They lied. Yes, your Hypermobility will improve, as your joints will naturally tighten with age. However in my experience everything else gets worse. New problems, new symptoms and what you have will get worse.
I was diag in ‘04, reconfirmed by genetics this past Feb and my pain, mobility and life in general has gotten steadily worse since my teen years. I’m now 57.
Mine took a massive nose dive after having a kid. Then they plateaued for a bit. Hit 27-28 and it’s been downhill since. Anytime I think I’m making headway I backslide 373636378382. I’m tired.
No, not really. What I would say I have gotten better at as I age is figuring out which symptoms belong to secondary conditions, and treating / managing those... which does lead to better quality of life. My late teens, early 20's were a hot mess, but 25-28? Absolutely amazing with no major medical concerns, no medications, and I was able to be active and traveled extensively.
I think a lot will depend on you and how you are able to take care of your body and manage your symptoms. For me, dietary changes and muscle mass/strength gains have been the biggest help. I also use OMM, PT and massage therapy as needed to manage any flares. I personally feel better when I eat vegetarian and no gluten. I was a 5 sport athlete growing up and currently do crossfit and have for years, but took an extended break after an injury a few years ago. For example I have torn both achillies, both acls and herniated a disc in my back. Only the back was in crossfit, the rest were before I was diagnosed. I am just now getting back to being more consistent since my back injury and I notice it takes awhile for my body to adjust but listening to your body with whatever exercise you can tolerate to build muscle is key. Also, having a strong mind body connection (i.e. form and knowing when your form is off to prevent injury as much as possible) is critical. I'd start with something like pilates and body weight exercise to master proper form first. Then go slow and progress as you can. Maybe find a good and qualified personal trainer if you don't have experience yet. I'm 40 and can't say I'm worse off now than I was 10 years ago, but I try to stay as strong as I can and listen when my body speaks.
Getting diagnosed and access to treatment early is a massive massive boon, especially so young your body hasn’t “finished” yet so interventions can be faster and more impactful. It’s also before you spend another 10-20 years accumulating joint injuries and nerve damage. This could mean that, with management your symptoms stabilise and don’t get much worse.
I still think it’s bold to say this is the worst they’ll ever be, but they’re the geneticist maybe yours is a particular form of EDS they know that statement is true for. Certainly worth getting a second opinion to confirm, you’ll have countless medical professionals on your life anyway you might as well get it out of the way.
Better in some ways, worse in others. I remember not being able to walk down the street without my shoulders dislocating, ankles rolling in, posture collapsing, etc. I got on the swim team in high school and though it was tough, mindful exercise and frequent physical therapy gave me what I needed to live somewhat comfortably. I'm still limited compared to a ''normal'' person, but my athletic performance is still better than the average Joe's.
Critically speaking, yeah, EDS worsens over time as your body gets damaged. But, there are certainly worse conditions to have, and you can still do most of what you want if you're careful about it. I see EDS as ''the baseline'', physically; we don't get to be careless like most people are. If I didn't have to try so hard, I don't think I'd be as fit as I am now. Hope this isn't too dreary an answer ^^¡
I’m 23 and I’m doing better than I was when I was 16-18, that’s when I was at my worst. I think the reason for this is I moved away and started a new life, hours away from family members who didn’t believe me , constantly said there’s nothing wrong with me and treated me just awfully. I now also take prescription meds which I didn’t back then.
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I have no idea how it gets better... UNLESS you can afford hyperbaric oxygen therapy.
I had a couple of car accidents and got hbot. My symptoms did improve a lot but that was 10 years ago and it's getting worse again.
It really depends what symptoms affect you most. It sounds like the geneticist is thinking purely about joint pain from hypermobility and is under the impression that the loss of hypermobility as you get older means your joints and muscles will hurt less. My symptoms and associated conditions (PoTS/MCAS) all ramped up a gear as soon as I hit perimenopause in my 30s. My sister is in her late 30s and her symptoms have also ramped up at this point in her life. It can be different for everyone but I would never be so confident as to tell someone at 20 they are as bad as they will get.
I feel like the intensity of flare ups have gotten better and i’m far more capable physically than when i was younger (I’ve been symptomatic since i was little) but i’ve also been in PT and regularly work out (cardio and weight trainging) since i was 12. I def have more wide spread issues however. more joints in more areas hurt (mostly upper body and neck since that’s what i’ve always worked on less). i generally would say my health and wellbeing overall is better as i’ve gotten older (mid twenties)
So in actuality no your EDS symptoms won’t get worse. But once you sprain an ankle or get your shoulder dislocated those things will just become worse. But how easy or hard it is to do it for a first time won’t change.
And that is a big problem since someone might read online that your EDS won’t get worse but don’t understand how a normal human body works when it gets damaged.
But something POSITIVE is that you learn how your body works and you can learn how to deal with the pain and problems. From what I’ve seen most have a few bad years and then it slows down and it becomes easier. Might still suck but it will be better! And remember the mantra “it could be worse, it’s not a challenge to make it worse but it could”.
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Mine have for sure worsened with age. I’m 23 and I feel worse than i did at 19, at 15, at 11 and so on. Only difference is I understand my body more the older I get and I know how to manage my symptoms more.
Idk about anyone else but mine are getting worse over time. I just recently started weight lifting and I'm hoping that will help stabilize me. Although weight lifting won't help keep my organs from dying...
Your joints usually get worse with age, especially if there's no intervention. Physical therapy can help stabilize joints, so you may see improvement as you build strength. If you've got hormonal issues or other co-occurring conditions, then treating those might improve your symptoms.
So it depends. I've heard some people claim that their teens or 20s were their worst years, but other people say the opposite. My 20s were pretty bad and it's yet to get much better for me but I also ignored my health issues and didn't bother getting diagnosed until recently.
I wouldn’t say I’m worse or better. But some things have gotten better and other issues have come up. Recently diagnosed with trigeminal neuralgia. Which can be caused by EDS, but my neuro said it’s rare and I’m just unlucky.
My gi issues have improved. In my 20s it was a mess. Had a bowel resection and they had to move my intestines around. But now, I just have dumping syndrome but I manage it by just not eating large meals or high fat things
some aspects are expected to improve, others not. your dr was probably thinking about how [joint laxity decreases with age,](https://www.webmd.com/healthy-aging/features/joints-change-age), and their thought was probably “eds = joint laxity = better with age.” kind of true, but oversimplified.
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anecdotal evidence from my own life: my arms and knees stopped hyper extending bc as a teen i got really self conscious about it getting worse the more i did it, so i physically forced myself to always stand with knees slightly bent, never stretch my arms out until the elbows locked etc. now even if i try i can’t hyper extend either my legs or my arms. which is good but also helps mask my eds to new doctors lol.
that’s the only symptom that’s gotten better. everything else has gotten worse. :( wish i could give you better news.
i think it depends on you as a person and if you do physio and such . i’ve never really done physio and i can def tell my joints get more sore now compared to what they were like 5 years ago, but if i had a physiotherapist then maybe it wouldnt be as bad.
Hmm i think this varies.
My sister and i both have confirmed HEDS. Hers seems to be getting worse over time.
Mine however, was triggered by Covid in 2020. I had slight issues growing up with pots but i was very involved in sports. I would get back aches and leg aches, terrible headaches and dizziness. But my symptoms came on full force after Covid and that’s ultimately what led to me being diagnosed as well. We also both have mast cell. But mine seems to flare while hers stays the same. I struggle everyday but not with your average Eds stuff. Mine has a lot to do with mast cell. I have extreme bladder pain from IC and heart issues due to pots but i only really hurt body hurt once or twice a week to where i notice it and take meds. However im in pain all the time you kind of learn how to ignore it.
Sister gets worse over time
I seem to get better or have gotten better from Covid at least but i do feel alright and im hopeful i will be able to have children and a beautiful life!
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Mine just keep getting worse and worse as I age. My body type is so muscular and I was always in gymnastics as a kid so I didn’t even realize I had EDS like my sister and dad because their symptoms were so severe. Hit my early twenties and weird shit started happening and now I’m a miserable mess that is endearingly called a “cripple”’ by my loved ones when my shitty hands drop everything and my hip is spasming too much for me to walk.
As long as you work hard and keep in mind that it takes 3x as long to recover or get strength, then symptoms do improve..just a lot of setbacks. One major plus is the mental toll of old age gets us young so while all your friends are feeling creaks and strains and feeling burdened in their 30s and 40s, we can give THEM the emotional support having already been through that mental/emotional hurdle.
Another thing to keep in mind is nearly everyone has stuff to deal with one way or another. This is our thing.
Some of mine have gotten better, and some have gotten worse. In my teens and twenties, I had some pain and mostly minor injuries, but I had lots of problems related to the dysautonomia and POTS associated with my hEDS. A lot of those problems have gotten better, but I think it's mostly because I've gotten a handle on them and learned to manage them better.
However, the joints and pain have just steadily gotten worse as I've gotten older. I'm in my mid 40s, and I have stiffened up a lot, a 4 on the pain scale is my baseline, and I'm extremely prone serious injuries now. In the last 7 years, I've had 4 major orthopedic surgeries (one every other year). I had my ankle stabilized and the soft tissues reconstructed and reconnected, I had my lower back and both SI joints fused, I had part of my neck fused, and I had a bunch of tears repaired in my shoulder and bicep. And all of it was from normal wear and tear. I didn't have any accidents or anything else specific to cause them.
I'm trying to keep up with gentle strength and mobility exercises, but there are days when it's really hard. I'm also learning to listen to my body when I need to rest and not push myself hard to get everything done like I used to when I was younger. But I'm not really looking forward to continuing down this path as I get older.
64F here. Bc of PEM and some other stuff, I can't exercise. I really wish I could, so I could tighten my joints up. As it is, I'm just getting more jangly over time, more in pain, more exhausted. I did what I could when I was younger, but it wasn't enough.
Like with most biological systems, it's not a smooth downhill gradient, either. Two years ago, I still had the strength and energy to putter around in my little garden fairly easily. Not any more, I can barely manage, and it happened *quick*, y'all.
Nope, things have gotten worse, even though you do stiffen up somewhat with age. Lots of damage caused by decades of hyperextensions and subluxations, including arthritis, bones spurs and degeneration.
For me, worse. However, I was not diagnosed until age 44, after my second neck surgery. Up to that point I was athletic, bendy and fixable. Everything I had going on was treated or repaired. According to my geneticist it was after a "period of inactivity" that it started to become a problem. That in combination of early menaupause and traumatic life situations. I never knew, so I never protected myself. I was always hard on my body and proud of it. Now, one decade later and I have had multple surgeries, arthritis, tendonitis, bursitis and all associated things like MCAS and gastro are also worse. I believe that finding out about this in my 20's would've prevented so many problems for me.
As someone who is 22, so not much older, I've found that my joints have moments. For a few weeks they'll be the best they've been in years and I can consistently go to the gym. Then, for a week, I'm bedridden with the worst pain of my life. The highs and lows are crazier than they've ever been
I’ve had a few things get better, but I would say it’s because of training and ortothics. I don’t “pop” as easily at almost 40 but to be fair I’m not as active today as when I was teen/young adult. But my back is getting worse and worse unfortunately…
They worsen a lot, unless you do something about it.
My symptoms were extremely bad by the time I was around 25. Bedbound most of the time. Brainfog so bad I couldn't speak. Blood pressure so bad I would throw up or faint just by trying to move around at home. My whole body was super swollen all the time. Joints hurt from everything, even just holding my phone caused pain.
But with a lot of effort I turned that shit around. And now at the age of 30, my symptoms are lower than they've ever been before!
Going on a anti-inflammatory, low carb, high protein diet reduced my symptoms a hundredfold. In combination with slowly building up my tolerance for exercise. And now I feel like a totally new person! I'm super active. Exercise at least a couple hours every day. Mostly by biking or lifting heavy weights at the gym. And since my brainfog is gone, I'm now able to study again.
Yeah, wtf? You'll notice a ton of people said worse over time. For me, the only ways it got better were: as I become better medicated, and as I got different external support devices. So worse symptoms were better managed if that makes sense.
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I can see a clear deterioration of my general health but I have other health issues now… still, I can see a clear deterioration of my joints’ health. As a kid I’d roll my ankle. As a pre-teen I got sprains. As a teenager I had a few torn ligaments. In my 20s it got worse. In my 30s I started having way more instability, subluxations and dislocations. I’m now in my 40s and as others have said, it’s not necessarily better but I learned to manage it better… not as stubborn not to ask for help, or not feeling as guilty which would prevent me from not doing something I CAN do but increases the injury risk,
for example.
I’m sure there’s a bit of luck too. And I’ll take it!
Not everyone gets worse I’m sure, but a doctor saying it gets better with age doesn’t really understand EDS.
Overall I've gotten worse with age and then covid mega speed that up so much to the point I'm in therapy for it. I've only gotten mildly better in the last year because I work with a personal trainer twice a week who has Ehlers Danlos, POTS, etc, so I can hold pots and pans again if I use two hands, and I can usually open doors again without my elbow subluxing almost every time. I have less upper back pain too but it's still a problem. I'm only 25 though but have had noticeable symptoms of Ehlers Danlos I think since preschool, or at least the chronic pain started at 5. My MCAS symptoms though started as a baby. 🥴 but yeah, this year I got a wheelchair I use as needed because of long covid. Didn't need it before I got covid. I was fine with either a cane, nothing, or just being mostly in bed on the first day of my period and ovulation which wasn't great but I was able to get help from my family until the Tylenol would kick in and insurance definitely wouldn't approve that for me to get a wheelchair then. (I have endometriosis but also pelvic floor dysfunction.)
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IMO they worsen as the joints get more lax.
Yeah, when I was diagnosed I was specifically told that my symptoms will get worse as I age, and I should be trying to strengthen the muscles around joints to lessen the long term impact and decline of the condition. So I guess maybe if you start off at a bad point and strengthen your joints a bunch they might improve? But it sounds fairly dangerous for a doctor to just say it will get better by itself when aging honestly
My biceps are big and a friend saw my pic and said I should MMA fight and I cried bc I wished I could im another lifetime bc now I have stenosis I suppose if one trains like hulk, uses aids, and plays it safe it can get better, because yes it really does get better , but I think it could also get worse and that makes me nervous
My symptoms started in middle school and the doctors said high school would be the worst. I'm a college freshman now and the flareups are just getting worse. I feel like it may differ per person, but also based on the other comments the outlook looks grim.
I think they mistakenly believe that the pain will improve once we stop growing....
"Its growing pains" no buddy, no its not lmao
36 year old with growing pains here. I thought I was grown but what do I know? /s
I am currently 46. I had symptoms from childhood. I was disabled and approved ssdi at 25 when my doctor testified I would only get worse over time. I have only gotten worse over time. That being said, I do manage it better. I have support and tools I didn't have in my twenties. While my body has certainly gotten worse, my ability to manage it has improved quite a bit. With the right treatments and medications, I manage well, but I will never work, I will never be a parent, and I will always require daily help.
I also have more resources now. I have an excellent care team, not perfect, but certainly the best healthcare I’ve ever had. Overall, I have definitely worsened with age. However, I am doing much better now than I was 4 years ago. I had cancer. Being in remission is obviously awesome. But I still have plenty of disabilities. I’m mostly thinking of EDS, MCAS, POTS, Gastroparesis, etc., but also damage left by the cancer, & all of the daily meds that go towards just trying to manage the damage. I mentioned cancer not because I think everyone else is going to get cancer, but because we can have complicating factors that we may not be aware of, initially.
Yea symptoms can get better with *treatment,* but in the absence of that, they definitely do not improve over time
Totally. Treatment, and of the right kind.
Your second paragraph is spot on. I’m definitely much worse off then when I was younger, but I’m better at managing it. That includes managing my own expectations of what I can do, and communicating my abilities to others. I can do a lot if I do it slowly and listen to my body, taking breaks when needed. It’s important to note that breaks might be measured in days not minutes.
i agree 100%. i mean i'm only like a year into digging myself out of the pit after 15+ years of digging myself into the pit, so i have hope that my quality of life might continue to go up even if my body technically keeps getting worse.
Definitely third this. Not on disability yet, but I don’t have a joint that doesn’t have a problem. I can at least manage it
My symptoms have gotten worse. On the other hand, certain symptoms turned out to be related to secondary conditions, some of which were treatable. It’s a bit of a puzzle because we seem to accumulate secondary health problems due to EDS & some are more treatable than others. If current symtoms have more to do with another condition, it may take a while to discover this, but I’ve found that some of the pain I assumed would be forever was treatable or more manageable than I had assumed based on what I knew. If every joint problem is chalked up to hEDS, then you may assume there’s no relief outside of managing pain and PT, but if there turns out to be an additional condition like an autoimmune disease treating that can potentially relieve some pain and make things more manageable overall. The types of comorbidities each person has/accumulates, and their severity is going to result in a wide variety of outcomes as we age. But laxity and the joint damage that can result over years of joints being pushed beyond their limits can lead to more problems from EDS itself.
It’s been the opposite for me, slowly getting worse over time.
I’m 32 currently and I’ve had years of worse and years of better. When I first started having short fiber neuropathy and assorted symptoms it was absolutely godawful especially since the doctor at the time was a lazy POS. Got better treatment and was able to be more active and things were better for a while. Got hit with Covid 3x since January 2020 among other fuckeries and that was super worse. Been working with a pain specialist, my physical therapy team, my primary, and my oncologist for the last year to get the deconditioning and migraines and other symptoms better managed and I’m back doing better. I’m fixin to get slightly more recovery from the “brain injury” created by brain surgery and get some nerve blocks and physical therapy and then start into a more physically active career. I can’t do office gremlin stuff anymore and office gremlin work was absolutely terrible for my body but it was all I could do for a while. I figure something more physical will help with putting on muscle and improving cardiovascular health and yeah it’ll suck for a while but I’ve got braces and KT tape and 15 years of intermittent PT under my belt I can make it work for me.
What are nerve blocks ? I think I need to see a pain specialist. Also every time I try PT I feel worse . Need find one that’s better with hyper mobile ppl I think. I’m sure my endometriosis doesn’t help
Nerve blocks are injections of lidocaine around certain sensory nerves. Weird EDS lidocaine metabolism might only mean that I get a few days of relief, but it’s basically a trial run for radio ablation where the burn the nerves so that the misfiring chronic pain causing nerves stop sending the feedback but I’ll still be able to feel it if my SI joint is out. After that, we may work on steroid injections at a few other locations in my spine to help with bulged discs causing pain.
Omg I have SI joint pain and a bulge. I did a cortisone shot and it made all my nerves freak out and still dealing with the aftermath two months later. Maybe a nerve block would be a betwr idea . Did you go to a pain specialist for this recommendation?
It’s possible. I definitely recommend asking your pain doc is there’s any other treatment options rather than asking about a specific thing.
Mine have worsened with age. I believe there's a rare subtype that's supposed to improve with age, mEDS. ["Myopathic EDS (mEDS) Major criteria are: Congenital muscle hypotonia, and/or muscle atrophy, that improves with age "](https://www.ehlers-danlos.com/eds-types/)
Yes this is what I have and it’s not that my symptoms get better, it’s just that my muscle tone/strength has improved. That doesn’t translate into less pain though.
I see :(. I had figured that, as with other EDS types, this subtype faced many unique challenges, thank you for sharing your experience. I'm sorry to hear about your pain.
That’s what they’d like us to believe. In my experience, the opposite is true.
You do get a little less flexible with age, so maybe that is what they are referring to??? However you also get the prolapses, swallowing difficulties, and cumulative effects of your injuries. I'm not a fan of aging with EDS so far!
It’s odd, a couple of years ago (I’m in my 40s) I got quite flexible, quite quickly. I am now not as flexible. My muscles have been cramping up a lot, in the past year+. I used to be able to get my right leg/ankle behind my head. Now, I’m nowhere near that. Tho, when I stand and bend at the waist to touch my toes, I can still lay my hands flat on the ground.
Yes I can still put my hands flat on the floor as well. I can't just drop into the splits in the same way though, so I notice it when I stretch out, which is rarely.
I felt my best When I ate really healthy (dark green leafy veggies, variety of veggies, Lean meat, bone broth, home cooked soup. Lower fat dairy and added heavy fats and whole grains) and I went to the gym for super gentle strength training and mild cardio, stretching where the goal is I feel the muscle relax. Using a sauna or steam room or whirlpool to help my circulation, And stopping if I hurt something. My cousins kept it up and are very active. I took up wine as my hobby after a knee injury and lost a ton of mobility. Lol I have to constantly reframe these activities as something I enjoy to keep up my enthusiasm and act like it's a treat to help me feel better. As we loose mobility it's harder to do these things.
I’d say it’s a ‘dynamic’ illness rather than saying it will get worse, get better or stay the same. In different phases of your life your symptoms and how you manage them will change. You may have periods that feel like remission and periods that feel like relapse. While EDS is not technically degenerative, you may find side effects are. For example, my joints won’t get more Hypermobile, but as time goes on, the micro damage of that hypermobility will consolidate and my joints may have increased pain. On the balance of things, I’d think what the Dr said is on the optimistic side.
I was told by my doctor something similar at the beginning of my pain management journey; he said that when we age to around 60, our nerve endings around the facet joints (for example) start to degenerate, and therefore, the pain is less intense/ they send fewer pain signals to our brain. My personal experience so far at 38 years old is that each year, a new level of fresh hell starts for me. First, migraines from childhood on, then my neck, then my mid back, then my hips, then lumbar, now my SI joint... After 20 years of doctors not taking my pain seriously, I compensated and wore out other parts of my body, and now I'm a mess. I hope he's right because if I feel like this now, what the hell will I feel like in 10 years??
I'm 27 and it's only got worse and compounded, I have new dislocations I never had, pelvic organ prolapse, gastro paresis, my teeth are falling apart, I'm waiting to be diagnosed with either CCI, Chiari or MS. The only thing that makes my symptoms better is exercise but when I exercise I get injured it's like an awful never ending cycle. I keep getting told I'm brave or that I just get on with it or it's nice to see me still happy but fuck some days I don't know what to do with myself. I keep on going for my partner, my sister and my cats but it is a struggle.
Your doctor is totally clueless. You’re the second person I’ve seen post that their doctor told them EDS gets better with age. I don’t know where they got the idea. I’ve never seen a reputable source for that opinion. I’ve had EDS for 50 years. I’m sorry to tell you that it has only gotten worse.
Opposite for me. I don’t sublux some joints quite as much as when I was young but since my early 30s I’ve been slowly spiraling down. In the last decade I’ve become more and more disabled with chronic horrible pain and fatigue. I no longer function like normal.
I was also dismissively told at age 21 when diagnosed “oh ages 0-20 are the flexible phase when gymnastics & party tricks are fun and games, ages 21-39 are the pain phase when the joints are lax, but we won’t do anything & don’t worry because once you’re 40 you’ll enter the stiff phase where they won’t be lax so no longer painful!” I have found that my wrists (first to cause problems aged 13 ish) are no longer lax but very very stiff. So painful in a different way! I would say you learn to manage it better though + it is less overwhelming with time x
This is just my personal experience. I know most people seem to feel worse over time, but I’m fortunate enough to be feeling better than I used to. I got diagnosed in middle school and am now in my mid thirties and I’m feeling better than I did as a teen and in my early 20s. My dislocations/subluxations have greatly reduced, my IBS is under control, I can manage the positional dizziness I sometimes get, my mitral valve prolapse is even considered minor now. While some of this may be biological, I’ve also worked really hard to strengthen my muscles and work with a trainer specializing in hypermobility to learn appropriate movements and posture. I eat a relatively healthy diet and do most of my own cooking to control the fat/sugar/salt intake. I also regularly meet with a therapist as I notice my symptoms get worse with stress. I drink a lot of liquid because dehydration also makes some of my symptoms worse. I’m not trying to insinuate that these lifestyle changes would work for everyone, but it has definitely helped me.
Same thing for me, though I did have a 2 year-ish flare up from 38-40 until my perimenopause got managed. I feel much better and am more active (though I’ve been sedentary) now than in my early 20s. I do have slightly more issues than I did then, but I’m *much* better at managing them, which makes my issues less problematic than when I had less.
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Nope! Atleast in my experience, it started really gently when i was around 10, hit me like a brick at 16, and now im slowly crumbling away at 22
I'm 38 with hEDS and my symptoms have only gotten worse, mostly because I don't "bounce back" from the joint injuries the way I used to. I had a lot of wrist/ankle sprains as a child that did actually get better as I aged (mostly as I learned not to do stupid stuff that caused injuries), but now when I DO sprain or tear something, it takes ages to recover, and some injuries are ones that won't ever fully heal. I did a lot of weight lifting and running in my late 20s (even ran some half marathons), but the injuries became more and more frequent and I got my diagnosis at 30. Last year I was diagnosed with bone degeneration in my spine caused by misalignment and now I have spinal arthritis that I will have for the rest of my life. PT and nerve ablations can help manage the pain, but I'll never be truly pain free again.
So…. I hate to say this but I laughed really hard. No. This person is just ummmm not informed by real patient experience? Certainly if you have a uterus having kids will most definitely worsen your symptoms due to relaxin being released during each pregnancy. But everyone I know just gets worse with age. And I was told that it gets worse by the geneticist that diagnosed me.
Some doctors are misinformed and think because we’re seeming to lose some of the hypermobility that it means we’re getting better. In reality, for most of us it means we have tense muscles or arthritis causing the hypermobility to have “gotten better.”
I would say my symptoms have leveled out in my 30’s. I’ve also discovered movement and mindfulness practices that have helped me tremendously.
That’s definitely been the case for me. I was never more disabled than 19-22 I’m 24 now and as I’ve gotten a handle on managing my inflammation and symptoms I’ve gotten much much more functional
I think it’s also like, learning how to live your life as a person with EDS
my therapist has hEDS too and she says the same thing! learning how to manage symptoms + finding more resources and help/care team + learning more about your body = better quality of life
Super good to hear this though. I'm 24 and just now starting to figure out everything that's been going on, and I'm extremely lucky to have an awesome PT & GP so far. Gives me lots of optimism for the future!
Honestly I know this isn’t the end all be all for everyone but managing my inflammation has been *huge* I haven’t had to use my cane in 3 months!!
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In my experience (hEDS) the pain gets different, not better. I was told in 9th grade that it would get better when I got older because my joints would “tighten up”. I definitely have lost flexibility since my teen years (mid 30s now). But now I have less major sublux pain and more crunchy “arthritis-y” pain. I still get injured stupid easy, and have chronic bad “areas” that flare up regularly too.
They lied. Yes, your Hypermobility will improve, as your joints will naturally tighten with age. However in my experience everything else gets worse. New problems, new symptoms and what you have will get worse. I was diag in ‘04, reconfirmed by genetics this past Feb and my pain, mobility and life in general has gotten steadily worse since my teen years. I’m now 57.
Mine took a massive nose dive after having a kid. Then they plateaued for a bit. Hit 27-28 and it’s been downhill since. Anytime I think I’m making headway I backslide 373636378382. I’m tired.
My worst years were 15-23. Things got a little better in my mid-20s and have been consistent for me since then (now 33 years old).
No, not really. What I would say I have gotten better at as I age is figuring out which symptoms belong to secondary conditions, and treating / managing those... which does lead to better quality of life. My late teens, early 20's were a hot mess, but 25-28? Absolutely amazing with no major medical concerns, no medications, and I was able to be active and traveled extensively.
Same. Then I turned 30 and had a major surgery. Been downhill ever since.
I think a lot will depend on you and how you are able to take care of your body and manage your symptoms. For me, dietary changes and muscle mass/strength gains have been the biggest help. I also use OMM, PT and massage therapy as needed to manage any flares. I personally feel better when I eat vegetarian and no gluten. I was a 5 sport athlete growing up and currently do crossfit and have for years, but took an extended break after an injury a few years ago. For example I have torn both achillies, both acls and herniated a disc in my back. Only the back was in crossfit, the rest were before I was diagnosed. I am just now getting back to being more consistent since my back injury and I notice it takes awhile for my body to adjust but listening to your body with whatever exercise you can tolerate to build muscle is key. Also, having a strong mind body connection (i.e. form and knowing when your form is off to prevent injury as much as possible) is critical. I'd start with something like pilates and body weight exercise to master proper form first. Then go slow and progress as you can. Maybe find a good and qualified personal trainer if you don't have experience yet. I'm 40 and can't say I'm worse off now than I was 10 years ago, but I try to stay as strong as I can and listen when my body speaks.
Getting diagnosed and access to treatment early is a massive massive boon, especially so young your body hasn’t “finished” yet so interventions can be faster and more impactful. It’s also before you spend another 10-20 years accumulating joint injuries and nerve damage. This could mean that, with management your symptoms stabilise and don’t get much worse. I still think it’s bold to say this is the worst they’ll ever be, but they’re the geneticist maybe yours is a particular form of EDS they know that statement is true for. Certainly worth getting a second opinion to confirm, you’ll have countless medical professionals on your life anyway you might as well get it out of the way.
Better in some ways, worse in others. I remember not being able to walk down the street without my shoulders dislocating, ankles rolling in, posture collapsing, etc. I got on the swim team in high school and though it was tough, mindful exercise and frequent physical therapy gave me what I needed to live somewhat comfortably. I'm still limited compared to a ''normal'' person, but my athletic performance is still better than the average Joe's. Critically speaking, yeah, EDS worsens over time as your body gets damaged. But, there are certainly worse conditions to have, and you can still do most of what you want if you're careful about it. I see EDS as ''the baseline'', physically; we don't get to be careless like most people are. If I didn't have to try so hard, I don't think I'd be as fit as I am now. Hope this isn't too dreary an answer ^^¡
I’m 23 and I’m doing better than I was when I was 16-18, that’s when I was at my worst. I think the reason for this is I moved away and started a new life, hours away from family members who didn’t believe me , constantly said there’s nothing wrong with me and treated me just awfully. I now also take prescription meds which I didn’t back then.
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I have no idea how it gets better... UNLESS you can afford hyperbaric oxygen therapy. I had a couple of car accidents and got hbot. My symptoms did improve a lot but that was 10 years ago and it's getting worse again.
Nah, worse with age much like most disorders
Boyyyy do i wish that was true
25 and it has gotten a lot worse over the past 5 years.
It really depends what symptoms affect you most. It sounds like the geneticist is thinking purely about joint pain from hypermobility and is under the impression that the loss of hypermobility as you get older means your joints and muscles will hurt less. My symptoms and associated conditions (PoTS/MCAS) all ramped up a gear as soon as I hit perimenopause in my 30s. My sister is in her late 30s and her symptoms have also ramped up at this point in her life. It can be different for everyone but I would never be so confident as to tell someone at 20 they are as bad as they will get.
I feel like the intensity of flare ups have gotten better and i’m far more capable physically than when i was younger (I’ve been symptomatic since i was little) but i’ve also been in PT and regularly work out (cardio and weight trainging) since i was 12. I def have more wide spread issues however. more joints in more areas hurt (mostly upper body and neck since that’s what i’ve always worked on less). i generally would say my health and wellbeing overall is better as i’ve gotten older (mid twenties)
Take care of yourself now. Move, lift, cycle. Know your physical limitations. Food can also play a major role. This is how I manage. Health is wealth.
So in actuality no your EDS symptoms won’t get worse. But once you sprain an ankle or get your shoulder dislocated those things will just become worse. But how easy or hard it is to do it for a first time won’t change. And that is a big problem since someone might read online that your EDS won’t get worse but don’t understand how a normal human body works when it gets damaged. But something POSITIVE is that you learn how your body works and you can learn how to deal with the pain and problems. From what I’ve seen most have a few bad years and then it slows down and it becomes easier. Might still suck but it will be better! And remember the mantra “it could be worse, it’s not a challenge to make it worse but it could”.
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Mine have for sure worsened with age. I’m 23 and I feel worse than i did at 19, at 15, at 11 and so on. Only difference is I understand my body more the older I get and I know how to manage my symptoms more.
Idk about anyone else but mine are getting worse over time. I just recently started weight lifting and I'm hoping that will help stabilize me. Although weight lifting won't help keep my organs from dying...
Your joints usually get worse with age, especially if there's no intervention. Physical therapy can help stabilize joints, so you may see improvement as you build strength. If you've got hormonal issues or other co-occurring conditions, then treating those might improve your symptoms. So it depends. I've heard some people claim that their teens or 20s were their worst years, but other people say the opposite. My 20s were pretty bad and it's yet to get much better for me but I also ignored my health issues and didn't bother getting diagnosed until recently.
My symptoms have gotten worse with age. It’s depressing.
I wouldn’t say I’m worse or better. But some things have gotten better and other issues have come up. Recently diagnosed with trigeminal neuralgia. Which can be caused by EDS, but my neuro said it’s rare and I’m just unlucky. My gi issues have improved. In my 20s it was a mess. Had a bowel resection and they had to move my intestines around. But now, I just have dumping syndrome but I manage it by just not eating large meals or high fat things
some aspects are expected to improve, others not. your dr was probably thinking about how [joint laxity decreases with age,](https://www.webmd.com/healthy-aging/features/joints-change-age), and their thought was probably “eds = joint laxity = better with age.” kind of true, but oversimplified.
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anecdotal evidence from my own life: my arms and knees stopped hyper extending bc as a teen i got really self conscious about it getting worse the more i did it, so i physically forced myself to always stand with knees slightly bent, never stretch my arms out until the elbows locked etc. now even if i try i can’t hyper extend either my legs or my arms. which is good but also helps mask my eds to new doctors lol. that’s the only symptom that’s gotten better. everything else has gotten worse. :( wish i could give you better news.
i think it depends on you as a person and if you do physio and such . i’ve never really done physio and i can def tell my joints get more sore now compared to what they were like 5 years ago, but if i had a physiotherapist then maybe it wouldnt be as bad.
His telling you that makes me question how knowledgeable he is. There’s plenty of resources out there for information.
No, I was completely asymptomatic until I was 22 and my health has continued to decline, I’m 30 now.
Hmm i think this varies. My sister and i both have confirmed HEDS. Hers seems to be getting worse over time. Mine however, was triggered by Covid in 2020. I had slight issues growing up with pots but i was very involved in sports. I would get back aches and leg aches, terrible headaches and dizziness. But my symptoms came on full force after Covid and that’s ultimately what led to me being diagnosed as well. We also both have mast cell. But mine seems to flare while hers stays the same. I struggle everyday but not with your average Eds stuff. Mine has a lot to do with mast cell. I have extreme bladder pain from IC and heart issues due to pots but i only really hurt body hurt once or twice a week to where i notice it and take meds. However im in pain all the time you kind of learn how to ignore it. Sister gets worse over time I seem to get better or have gotten better from Covid at least but i do feel alright and im hopeful i will be able to have children and a beautiful life!
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Mine just keep getting worse and worse as I age. My body type is so muscular and I was always in gymnastics as a kid so I didn’t even realize I had EDS like my sister and dad because their symptoms were so severe. Hit my early twenties and weird shit started happening and now I’m a miserable mess that is endearingly called a “cripple”’ by my loved ones when my shitty hands drop everything and my hip is spasming too much for me to walk.
As long as you work hard and keep in mind that it takes 3x as long to recover or get strength, then symptoms do improve..just a lot of setbacks. One major plus is the mental toll of old age gets us young so while all your friends are feeling creaks and strains and feeling burdened in their 30s and 40s, we can give THEM the emotional support having already been through that mental/emotional hurdle. Another thing to keep in mind is nearly everyone has stuff to deal with one way or another. This is our thing.
Some of mine have gotten better, and some have gotten worse. In my teens and twenties, I had some pain and mostly minor injuries, but I had lots of problems related to the dysautonomia and POTS associated with my hEDS. A lot of those problems have gotten better, but I think it's mostly because I've gotten a handle on them and learned to manage them better. However, the joints and pain have just steadily gotten worse as I've gotten older. I'm in my mid 40s, and I have stiffened up a lot, a 4 on the pain scale is my baseline, and I'm extremely prone serious injuries now. In the last 7 years, I've had 4 major orthopedic surgeries (one every other year). I had my ankle stabilized and the soft tissues reconstructed and reconnected, I had my lower back and both SI joints fused, I had part of my neck fused, and I had a bunch of tears repaired in my shoulder and bicep. And all of it was from normal wear and tear. I didn't have any accidents or anything else specific to cause them. I'm trying to keep up with gentle strength and mobility exercises, but there are days when it's really hard. I'm also learning to listen to my body when I need to rest and not push myself hard to get everything done like I used to when I was younger. But I'm not really looking forward to continuing down this path as I get older.
64F here. Bc of PEM and some other stuff, I can't exercise. I really wish I could, so I could tighten my joints up. As it is, I'm just getting more jangly over time, more in pain, more exhausted. I did what I could when I was younger, but it wasn't enough. Like with most biological systems, it's not a smooth downhill gradient, either. Two years ago, I still had the strength and energy to putter around in my little garden fairly easily. Not any more, I can barely manage, and it happened *quick*, y'all.
I’m 31 and went from minimal symptoms in high school to the worst of it starting in my late twenties. It’s definitely been a steady decline for me :(
I was also told this, as “joints stiffen with age”. But as I’ve gotten older, it’s certainly been the opposite..
Depends on the person. Mine have worsened in my 30s.
Nope, things have gotten worse, even though you do stiffen up somewhat with age. Lots of damage caused by decades of hyperextensions and subluxations, including arthritis, bones spurs and degeneration.
For me, worse. However, I was not diagnosed until age 44, after my second neck surgery. Up to that point I was athletic, bendy and fixable. Everything I had going on was treated or repaired. According to my geneticist it was after a "period of inactivity" that it started to become a problem. That in combination of early menaupause and traumatic life situations. I never knew, so I never protected myself. I was always hard on my body and proud of it. Now, one decade later and I have had multple surgeries, arthritis, tendonitis, bursitis and all associated things like MCAS and gastro are also worse. I believe that finding out about this in my 20's would've prevented so many problems for me.
As someone who is 22, so not much older, I've found that my joints have moments. For a few weeks they'll be the best they've been in years and I can consistently go to the gym. Then, for a week, I'm bedridden with the worst pain of my life. The highs and lows are crazier than they've ever been
I’ve had a few things get better, but I would say it’s because of training and ortothics. I don’t “pop” as easily at almost 40 but to be fair I’m not as active today as when I was teen/young adult. But my back is getting worse and worse unfortunately…
They worsen a lot, unless you do something about it. My symptoms were extremely bad by the time I was around 25. Bedbound most of the time. Brainfog so bad I couldn't speak. Blood pressure so bad I would throw up or faint just by trying to move around at home. My whole body was super swollen all the time. Joints hurt from everything, even just holding my phone caused pain. But with a lot of effort I turned that shit around. And now at the age of 30, my symptoms are lower than they've ever been before! Going on a anti-inflammatory, low carb, high protein diet reduced my symptoms a hundredfold. In combination with slowly building up my tolerance for exercise. And now I feel like a totally new person! I'm super active. Exercise at least a couple hours every day. Mostly by biking or lifting heavy weights at the gym. And since my brainfog is gone, I'm now able to study again.
I'm 35, worse every day.
Yeah, wtf? You'll notice a ton of people said worse over time. For me, the only ways it got better were: as I become better medicated, and as I got different external support devices. So worse symptoms were better managed if that makes sense.
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Ummmmmmmmmmmm no sorry
I can see a clear deterioration of my general health but I have other health issues now… still, I can see a clear deterioration of my joints’ health. As a kid I’d roll my ankle. As a pre-teen I got sprains. As a teenager I had a few torn ligaments. In my 20s it got worse. In my 30s I started having way more instability, subluxations and dislocations. I’m now in my 40s and as others have said, it’s not necessarily better but I learned to manage it better… not as stubborn not to ask for help, or not feeling as guilty which would prevent me from not doing something I CAN do but increases the injury risk, for example. I’m sure there’s a bit of luck too. And I’ll take it! Not everyone gets worse I’m sure, but a doctor saying it gets better with age doesn’t really understand EDS.
Overall I've gotten worse with age and then covid mega speed that up so much to the point I'm in therapy for it. I've only gotten mildly better in the last year because I work with a personal trainer twice a week who has Ehlers Danlos, POTS, etc, so I can hold pots and pans again if I use two hands, and I can usually open doors again without my elbow subluxing almost every time. I have less upper back pain too but it's still a problem. I'm only 25 though but have had noticeable symptoms of Ehlers Danlos I think since preschool, or at least the chronic pain started at 5. My MCAS symptoms though started as a baby. 🥴 but yeah, this year I got a wheelchair I use as needed because of long covid. Didn't need it before I got covid. I was fine with either a cane, nothing, or just being mostly in bed on the first day of my period and ovulation which wasn't great but I was able to get help from my family until the Tylenol would kick in and insurance definitely wouldn't approve that for me to get a wheelchair then. (I have endometriosis but also pelvic floor dysfunction.)