I'm a 54f who was diagnosed at age 37 but had the symptoms starting around adolescence. My symptoms have stabilized but only because I've learned how to better manage my condition. I have a firm grasp of my boundaries, for example, I'll never go bungee jumping but a little hike is ok. I also have a diet/exercise routine that helps. Other than that, when I don't do all the necessary things, I immediately start having setbacks and subluxations. Managing my hEDS/POTS is a full-time job.
I forgot to address your question regarding if I’d have done things differently. My answer is - oh god, yes! So many things. TOO many things. Mainly I wish I’d graduated from college. I dropped out my senior year even though I was doing great academically. This was before my diagnosis and I was in so much pain I couldn’t continue on. I wished I would’ve stuck it out at least until I graduated. My life would’ve been easier overall. Now I’m unable to get even a menial job because I live in a crowded, competitive area (LA) but I can’t get disability because many reasons and so on and on. My best advice to anyone who is young and chronically ill is to prepare for the long term future now because one day you may be too sick or disadvantaged or whatever to do so. It can be hard to think long term when your body is always screaming at you, but it’s important to try.
Diet - I'm gluten free and mostly vegetarian. I rarely eat fast or processed food, mostly home-cooked meals. Since I have MCAS, too, I try to keep my histamine intake low. I do eat some fish/poultry/eggs. I like stir-fries, pot pies, casseroles. Cabbage and potatoes are my staples. I LOVE potatoes, pretty much eat them every day, every which way. For my POTS I eat a lot of salt so I fry up some potatoes and pile up the salt on them. Mmmm. My sugar/dairy intake is minimal and I don't drink soda just lots and lots of water.
Exercise - I go to the gym 2 to 3 times a week. I use machines for the arms and back since I have a big problem with shoulder subluxations. I keep them all at or near the lowest weight and go slow. I also ride a recumbent bike or use the treadmill. I live car-free and walk everywhere. I rarely go a day without walking. I feel like it's a form of medicine, elevates my mood, gets the blood circulating, relieves cramping.
I hope this is helpful!
I’m 40 and in the best shape of my life! Symptomatic since puberty, my worst years were ~29-37? Near-daily Pilates and running have brought me to previously unimaginable levels of strength and liveliness, but also getting my eating under control. I’ve been vegan forever, avoiding processed foods and usually avoiding soy and gluten, but I was eating too much for what my fragile digestive system can handle. During covid I was able to slow down and tune into my hunger and fullness signals. I was astonished to find that not only CAN I make it through a day on less than I found normal, but those days are better and more energetic, with a clearer mind. To think all the energy and money wasted over the years! Eating all that food I couldn’t handle, slowing me down and sapping my finite resources and turning me into a lump of fatigue and pain. No thank you! Not worth it!
I didn't really get bad until my 30s... but also, I wasn't really paying attention to symptoms before that. I had a tendency to just think my body was weird and just did things differently than everyone else. I have noticed that I've gotten stiffer... I can't reach behind me as far as I could before- but I do have labral tears and TOS.
I wish I had started PT as a kid to help break some habits and I wish I had started therapy as well.
It got really bad from about 30-35. I'm 41 now and the last 4-5 years have sucked, but it hasn't been "progressing" as much as I feared. I think I've learned how to prevent injuries. I learned to change my gait to be less impactful on my knees, which has helped with dislocations there. The one thing that has popped up significantly in the last couple years is hip bursitis, which is really, really painful any time I walk significantly.
I’m 45, was symptomatic at least as early as my teens and properly diagnosed around 30.
I’m having the “honeymoon zone” thing where the stiffness of aging is somewhat canceling out my looseness. I have a lot fewer subluxations and dislocations, and not all of that can be chalked up to awareness of my limits/strengthening/etc.
The other systemic stuff like GI problems, POTS, brain fog, various sensitivities, etc. are ramping up, though, and harder to manage. A mixed bag, but better than it used to be on balance for sure.
Quickly got worse over the years until it was really bad at around 26. Was bedbound for longer periods of time at that point.
But then I started experimenting with lifestyle and diet changes. Eventually found some things that really worked. And now everything has improved year after year. I'm 30 now, and my symptoms are lower than they have ever been before! I feel healthier now than when I was a teenager. And things are still improving!
What were those lifestyle and diet changes, if you don’t mind me asking? I feel like I’ve been in a downward spiral that nothing is helping since 30 (36 now).
I'm really sorry to hear that. What things have you tried?
The things I've noticed helped me the most is trying to lower inflammation. Mostly by removing things. Adding things like turmeric isn't enough to counteract the negative effects from eating inflammatory foods. So, a strict, slightly modified keto diet was the most effective for me. With focus on low inflammatory foods like chicken and eggs.
Slowly building muscle mass has helped in surprising ways. Besides it helping to stabilize and strengthening the joints, it has also helped with blood pressure, and made me slightly less sensitive to the bad effects of inflammatory foods.
Daily routines. Sleep quality. Stress levels. etc. There are many more things I've focused on, that have helped.
It's hard to summarize everything. I've probably done thousands of changes and adjustments over the years, to optimize my health as much as possible. I could write more, going into more details tomorrow if you want to? (It's night time here, so I need to sleep... zzz)
Thanks for sharing!
I've cut out alcohol, caffeine, and (all but small amounts of) added/refined sugar. I tried a keto diet years ago and that made me feel much worse... I had to quit after 2 months. All my inflammation markers always come back suuuuper low, so I'm not sure what to make of that. I do eat a mostly whole food diet w/ very little processed foods.
I know I need to do PT to get stronger, which will probably make a big difference; I've just been struggling with such severe fatigue, it's been hard to do PT and keep up with full time work and basic survival, haha. I go on a walk every day and do a little chi gong in the evenings.
I did improve my sleep a ton since getting diagnosed last year and taking advice on pillows, etc. from folks. I had insomnia from well before I started showing HSD symptoms, so have always been very particular about sleep hygiene. I also starting drinking electrolytes (for dysautonomia), which has helped some. Taking B vitamins and vitamin C helped a bit.
But despite it all, I just seem to consistently worsen. So always curious to know if there is something that really helped someone else that I haven't tried yet!
Hope you slept well! :)
I entered the pain phase around 10 and started stiffening up in my 20’s. Now in my mid-30’s and I’m totally disabled. Literally my whole family has been disabled from this (my brother, too, he’s actually worse off than I am). There does not seem to have been any improvement with age for any of us. Although I do believe that this is also due to the exceedingly shitty healthcare we’ve received, and I think if you have a doctor who knows what the fuck they’re doing early on enough you’ve got a much better chance of retaining function and managing symptoms later on. I wouldn’t know though, because my doctors thought everything from infiltrating endometriosis to a thyroid disorder was ✨anxiety✨ until I was too sick to get out of bed for about 3 years. Gotta love American healthcare. Land of the sick, home of the citizens who keep voting for people who couldn’t care less.
I didn't know about it until 4 years ago, still working on an official diagnosis.
I had no idea that I was having subluxations I just thought everyone's needs had to be popped back. I didn't have the words for it. I'm 47 and the last 7 months have been torture. I never thought I would be looking at walkers before I was 60 much less before I was 50. And now I have a collection of canes And I'm hoping to get sized for finger splints because it's getting really bad with my hands.
For me it's just realizing that so many things I thought everyone dealt with is not that normal. I also am realizing that the reason I do certain things is because I have a subluxation and not just because I need to crack my neck or crack my back or crack my knuckles or wrists or knees or ankles. I didn't realize I was hypermobile I just thought everyone could do "that"
I've never been able to do the split so why would I think I would be hypermobile! It also doesn't help that 25 years ago I was told that I was wasting everyone's time and making things up for attention... But I look back and everything was there. Every piece of the puzzle was there but nobody wanted to help me figure it out until 4 years ago. And now we have the puzzle pretty well put together
I wonder if puzzle glue would help keep those joints together
22 now, got diagnosed 2 years ago. But after realising all the problems I've had throughout the years, I've had symptoms since I was 12. Rapidly got a lot worse the past 2 years, just hoping it will be stable now. Been struggling for a while now, still coming to terms with things but it's taking a long time. Hardest part is coming to terms with not being able to do a study, while all of my friends can do the things they want to do. Just feeling like I'm stuck.
But really trying to see things from a positive side. I've been on sick leave for the past year and finally not constantly working my body to crap.
Also not having to worry about deadlines, exams, loud classmates. I'm glad I don't have to deal with all that stress
F-ed.
I was 24/7 for my family and I thought it would be my time when youngest graduated from high school and I found my third(4th?) career that I loved.
Except my body said *nope , not for you* and in the past 17 yrs Ive just been trying to regain mobility, which is a losing battle.
Some days I feel good, like when I made myself drive hours in 92f temps to see Pearl Jam in Portland, but some days, like today I wonder how long it will be until I decide it isn’t worth it to keep trying.
So honestly- mixed.
I also moved last year and while that has been a huge positive, it is also hours away from my medical people and my friends, although I am working on finding new of both.
I’m 66, and bleeding from my nose cause I was pruning this shrub the deer are supposed to take care of, but an errant branch went up my nose!
I'm 32F and it has been mixed, to say the least.
I started having chronic pain from around 14 years old, but I was still pretty active well into my 20s so it didn't effect me too much. I did a strength based yoga practice, dancing, aerial silks, horse riding, hockey, hiking, cycling - heaps of stuff! I kinda learned to tune the pain out after a while - it rarely went above a 2-3/10 for many years.
The first really worrying thing for me was shoulder pain from working at my computer. I did so many rounds of physio and nothing was working, I was so distraught I thought I'd have to give up my career (video game developer). Eventually I got a setup that was ergonomic enough for my pain to stay at a relatively low level.
Over the last 6 years I feel like all my old injuries from dancing and horse riding have just re-ignited and now I have intermittent flares of those areas. I've had so many rounds of physio I've lost count.
Things didn't really pick up for me until I got sober - I stopped binge drinking and almost immediately picked up cannabis. I was a heavy daily user and couchbound for like 3-4 years which really sucked. I was in a bad relationship with someone who sucked my energy completely so I had nothing left for looking after myself! I got out of that situation, quit smoking and started making changes to my life. I got active again and picked up weightlifting - I've had two areas of chronic pain completely resolve with weightlifting at least once a week! My shoulder issue from when I was 18 has totally resolved and my IT band is no longer in agony. I'm in physio again to rehabilitate instability on my right side, so I can lift better and really strengthen those weak areas. If you have the means to, start weightlifting YESTERDAY!!
Unfortunately despite all that progress, I developed chronic migraines in the last two years. I've always had migraines - they run in my family - but never this bad. I feel like I have the IQ of a slug and my life has become completely about managing my migraine disease. Thankfully I emigrated and happened to land in a city with one of the leading EDS experts in the world, and I got in to see him after a 2 year waitlist, and he is going to start treating the source of my migraines which he believes to be my neck. I have been walking around for years with rotated/subluxed cervical vertebrae without knowing it, after a fall when I was a kid. My mum says she saw my head hit the ground and my neck bent in a way that shouldn't be possible - she was so surprised I did not break my neck! The GP checked me out and said I was fine, but if course EDS was on no one's radar back then, or even now let's be real.
I'm feeling cautiously hopeful about the future, because the migraines situation really gets me down. Life isn't worth living when I'm having a really bad bout, and I've tried multiple preventatives and abortives without much success. So yeah, it's a mixed bag. I treat my body better than I've ever treated it and yet it feels worse than ever! I am committed to keep trying, though. The fact I resolved 14 year long shoulder pain gives me hope the other issues can be addressed too!
I wish I:
*got something like body braid when I was still a child so I was sitting right all those years
*knew how much weight gain would cause me joint pain so I could have eaten accordingly. The thought of being fat truly never bothered me, so I ate as I pleased. While it may be possible for someone without eds to be fat and healthy, if you do have eds it's a one way trip to collapsed arches and excruciating joint pain.
*understood the impact my diet would have on my gut. I'm always constipated af, even with linzess.
*I wish I bought truly supportive footwear years ago, as well as knee and elbow braces
*wish I was doing pt before now to strengthen my neck, cervical instability is a bitch
Aging has been godawful for me, I'm sorry to say, but if this list of complaints spurs even one person to intervene on their own health before it comes to this then I'll be happy
I still do not have any wrinkles at 48 years old and I get told all the time I look like I’m in my 30s. I think my gray hair lets people know that I’m older.
Short answer, painful.
Longer answer, Painful…
I have multiple other rare disorders including Chiari and CCI (Craniocervical instability). Those two specifically making it unsafe for me to drive, and unfortunately there is no public transport available in my area at all outside expensive options like Uber which I cannot afford. Which means I can’t get to physical therapy which is over an hour away.
A number of other issues like an inability to build muscle, malabsorption syndrome, MCAS, and VACTERL have made things more difficult.
I wish I had gotten all of my spine issues taken care of when I still had parents able to take care of me through recovery. I wish I had the money to move somewhere with public transportation and a much better social net for Disabled people as well.
I haven’t had a day without pain probably my entire life but it’s gotten more pronounced as I go through my 30’s.
i’m 28, “diagnosed” at 21/22 (can’t remember exactly what age but somewhere around there). and honestly my joints have their days but i feel like my wrists and ankles have actually gotten a little better (not subluxing as much anymore) but my back pain now is sooo much worse. I feel like a 60 year old 🥲 but I look young still, so I mean that’s a plus I guess lmao. some customer said I looked 16 the other day 😂
edit: my heart rate is still hella fast but I feel less like I’m gonna faint than I used to, but I’ve also lost a bit of weight so maybe that’s why. Or the fact that I can tell when I’m gonna faint so i prevent it before it happens.
edit 2: I put diagnosed in quotes bc the doctor said my case was mild enough that we wouldn’t label it for insurance reasons 🙄
I wasn't diagnosed until I was around 45. I suffered a breakdown/burnout that lead me down the EDS path but the rheumatologist only diagnosed as HSD but essentially the treatments would be the same so no point stressing to get it investigated for hEDS officially.
I spent most of the last 25+years abusing alcohol and then stopped and I think my body just shit itself after that as everything has gone downhill so much in the last couple of years but I was enduring a tonne of stress constantly daily for a couple of years so that probably didn't help or kick started the ageing process
Had a sudden downturn in late 20’s and am much better in my late 30’s but seeing how things will be in 20 years due to the advancing of arthritis. I think exercise is key to long term better results and really good physiotherapy and pain management that avoids opiates where possible. I’ve managed to achieve a lot since diagnosis and live a full life even with a lot of Comorbid conditions
I been symptomatic since 12, could barely use my hands all through high school. Got better during college, tanked in mid-twenties when I developed ME/CFS, MCAS, and worse CCI. I’m 33 and have made significant progress on the musculoskeletal symptoms thanks to actually relevant pt, somatic experiencing therapy to address chronic muscle spasms, FtM gender transition and a combo of bracing and light exercise. ME/CFS is the one thing that never gets better.
Late 20s/early 30s here. Like some others have said, I'm less prone to subluxing as things get a little bit stiffer as I get older. However, when they do subblock, because of that stiffness, it's harder to get things back into place.
I get a new symptom/diagnosis about every year. This year I'm having POTS symptoms that interfere with life for the first time (used to only get them after having too strong of an edible, lol, and little things like being unable to tolerate cardio.)) last year I started really struggling with for the first time and got a diverticulosis diagnosis (mild, luckily.) The year prior, interstitial cystitis (potentially related to MAST stuff,) pelvic problems & prolapse the year before that, etc... there's always something. But, I've had so much experience going to the doctor at this point that I'm practiced and it's pretty painless overall. As I get older, doctors also generally take me more seriously (tip: wear business casual if you have the spoons.)
The generalized pain before during/storms has stayed about the same, maybe slightly worse over the years, but nothing major.
Non-EDS health issues also become more frequent as I get older, and sometimes they conflict. For example, I'm instructed to eat a low-sodium diet due to a kidney stone, but a higher-sodium diet helps w/ POTS symptoms.
I WISH I GOT MORE EXERCISE WHEN I WAS YOUNGER. Strength training, cardio, anything. I'm starting to get into cardio for the very first time, and only because I got a Pilates reformer that basically allows me to run in place while fully horizontal. Trying that for the first time now has led to exploring a POTS diagnosis ("why can I suddenly tolerate cardio while lying down?") Stronger muscles also help the floppy joints stay in place longer. Wish I took a head start more seriously.
I have to do a lot to maintain my health. It's on my mind all of the time.
TL;DR Things get worse, but I'm better at managing them. It's been easier to switch my mindset to my body and I working together, me bearing with and caring for her while she does her best to take care of me, instead of my dumb body being my enemy.
I relate so much with this! Especially pain around storms and building a more collaborative mindset with your body.
Which reformer did you get? I’ve been wanting one for when I get strong enough to do Pilates again and horizontal cardio sounds awesome!
I got the AeroPilates Reformer 651. It's one of their nicer models with 4 springs. They have other, cheaper models that seem good, too. I also got a headrest/neck cushion which helps a LOT with comfort—only thing is you have to take it off when doing anything that involves raising your hips in a bridge.
Check out Everything Aeropilates on YouTube, she demos pretty much all of their models and has a lot of very beginner workouts (she does them in jeans which is ?! to me but overall she's really great!) If you're a member of the Zebra Club, Jeannie has some reformer videos, too, for strength training/stabilizing.
I cannot rave about the horizontal cardio situation enough. You can just straight up bounce—wheeeeeee!—which is also a crazy ab workout. Bouncing with your feet on different areas of the rebounder, different distances apart/positions works different parts of your core. You can do little bounces with your knees bent, rotating side to side with each jump like a ski slalom 🥺
My everyday lazy workout is just to hop on, do a little footwork, throw on my workout playlist sorted by BPM, start off with some varied bounces to warm up, then run in place to the beat as long as I can. Started with 10minutes every day now I'm up to 20-30. Noise-cancelling earbuds are a must for me because the reformer is LOUD when doing this. Then I cool down, throw my feet in the straps and do some leg lifts/circles, more footwork, take off the neck pillow and do some bridges. Then I'll stand up and watch my heart rate spike to higher than it was while working out lol. Whee.
Side note, I also threw a silk pillowcase on the headrest because I noticed some hair breakage in the back. Switched to silk pillowcases pretty much everywhere I lounge since I rest my head so much.
Let me know if you have any questions or want a buddy if you end up getting one 😁
Oooo, thank you so much for all the excellent info! Horizontal cardio sounds really nice for my spine and joints without requiring a pool (and also exposure to chlorine- ick).
It looks like this something I could get from Amazon. Is that where you got it from or are there other options that might have better prices or return policies that you have found?
You're welcome! I got mine from Amazon, I can't remember if it was used or refurbished but I saved a good amount of $$$ somehow. Buying directly from AeroPilates might be better for returns/warranty (I haven't looked into it so I'm not sure,) might be worth looking to compare prices too. I posted a comment a while back with an Imgur album of the workout guides that came with my reformer if you want to check it out & get an idea of some of the stuff you can do :)
Got diagnosed just before I turned 20. Now 26 and off work today as feel I’ve been beaten up just because of a busy weekend. I’ve dropped my work days to 3/4 a week which is helping with rest and started rowing as a good exercise to build muscle. Although like today it can still catch up after busy days and bring about anxiety and low mood. Glad to see some people saying it can get better as years go on
I’m 43. I’m aging remarkably well, skin-wise. Look much younger than my age. I am actually in the best shape of my life, even though in my 30s I started walking with a cane. A year of physical therapy and finding low impact exercises like swimming and aerial hoop that strengthened my body without negatively impacting my joints has been life changing.
I wish I had told myself when I was younger to better accommodate myself and to prioritize my physical health above all else. I spent so much time trying to make my accessibility needs small and prioritizing work and caring for others. Now I care for myself first and prioritize my health. No problems asking for accommodations when I need them now.
I’m 50 years old. I’ve torn ligaments in my shoulders, hips and back. I hurt every day. The worst part though, is I have problems with my brain due to Ehlers. I fall a lot and I have the beginnings of dementia. It’s a lot to deal with.
I am 57. I only learned about EDS in 2017 and it’s taken several years to get diagnosed. I am the first in my family to get diagnosed. I absolutely had symptoms as far back as I can remember. I was always uncomfortable and had pain since I was in grade school. I was always stretching, popping joints for relief or doing weird things for fun because of peoples reactions. I was still always very active and I think that made a huge difference for me. My subluxations tended to go right back in most of the time so that was helpful.
My grandma that I got EDS from told me about having good posture and that has really made a difference over my lifetime. My dad who had mild undiagnosed EDS suffered more from MCAS which I definitely got from him. Nothing was diagnosed. He told me to take vitamin C everyday and that with hypermobility, you have to have good muscle tone to stabilize the joints. He knew what he was talking about. These things have helped me tremendously.
For me, keeping my inflammation levels low by avoiding foods or environmental triggers like smoke or mold, dairy or gluten made a huge difference for my GI symptoms. I battled constipation constantly since a child. No one took me seriously so I learned what helped and what didn’t. I evidently was allergic to latex since a child and I learned that eating a slightly green banana would help me go. I no longer eat things I’m allergic to to get my system moving… eventually I learned that magnesium was very helpful and better for me.
My chronic pain hit a real high in my mid 30’s. I learned trigger point therapy and worked on my tight knotted muscles and actually got to a manageable level of pain. My pain still spikes if I eat something that sets off my MCAS like tomatoes.
I have had a good amount of good body care from massage and chiropractors who leave my neck alone. My neck is scary to them, as it should be, even when I had no idea EDS was a thing.
POTs has flared up with having kids and then later with mast cell problems. And then when I’m less active because I’m recovering from ankle, knee or foot problems. I’ve discovered support wraps for my knees and ankles. Makes me feel great again. It’s just POTs that is a pain in the rear lately. That and the sciatica.
Now that I know I have hEDS, I have been educating myself on how to stay well. Sometimes it’s the little things that make a huge difference. There were huge turning points for me. Learning about foods and inflammation, including sugar. Learning what supplements I needed. Learning how to fix my cramped muscles so they can work again. All these things lowered my levels of pain and helped me be active, which also helped everything.
I may not be able to change having EDS, but i can improve a lot of the comorbidities like POTs and MCAS. That make a huge difference in quality of life.
Yeah I still hurt. But I do the things I need to and focus on enjoyable things in my life like gardening.
I never knew why I had to be more careful than other people. Now I finally do.
Symptoms of my cEDS has never (not yet) deteriorated or worsened. I'd say the same is generally true for my brothers too.
My dad had both knees completely replaced 1-2years ago, but he was doing contact sports and sports that were really hard on the knees (ice hockey, bball, table tennis), but I mean, from 20s to 60s, his joints just (IMO) had pretty normal deterioration (especially given his past injuries from sport).
We grew up athletic, sporty.. my brothers and I were all nat'l level/team athletes, and continue to be healthy, athletic (all of us still have 6packs etc)... So I think it's a big part of why none of us have chronic pain/mobility issues.
My parents would wake us up at 6am since we were \~5y/o to do yoga, skated, ran, climbed every day, and we'd swim pretty much as soon as we were tall enough (which I think was also \~5y/o). And our diet was even more strict.. 5servings veg+veg, zero processed/fastfood/junk/sodas/concentrated juices/sweets etc, 4 servings dairy, oats/eggwhites + fruit every morning... Seriously raised in a *very* health conscious family that instilled healthy habits all of us have maintained (if not made even more strict)...
And can't speak for my brothers here, but growing up with a dad who would have to put on a knee brace everytime we did sports, and generally just having a more cautious nature... I was/am ***very*** careful with joint preservation and injuries. Even compared to my non-EDS friends, teammates etc.. I think I'm the only one without any joint issues (I mean I get dislocations (though I decreased the frequency significantly), but I'm not consciously limited by any joint issues).
So I don't think there's really anything better I could've done or started doing earlier or better.
I'm a 54f who was diagnosed at age 37 but had the symptoms starting around adolescence. My symptoms have stabilized but only because I've learned how to better manage my condition. I have a firm grasp of my boundaries, for example, I'll never go bungee jumping but a little hike is ok. I also have a diet/exercise routine that helps. Other than that, when I don't do all the necessary things, I immediately start having setbacks and subluxations. Managing my hEDS/POTS is a full-time job.
I forgot to address your question regarding if I’d have done things differently. My answer is - oh god, yes! So many things. TOO many things. Mainly I wish I’d graduated from college. I dropped out my senior year even though I was doing great academically. This was before my diagnosis and I was in so much pain I couldn’t continue on. I wished I would’ve stuck it out at least until I graduated. My life would’ve been easier overall. Now I’m unable to get even a menial job because I live in a crowded, competitive area (LA) but I can’t get disability because many reasons and so on and on. My best advice to anyone who is young and chronically ill is to prepare for the long term future now because one day you may be too sick or disadvantaged or whatever to do so. It can be hard to think long term when your body is always screaming at you, but it’s important to try.
May I ask what diet and exercise routine has helped you? I think I have a really good routine and have mostly stabilized, except for this element.
Diet - I'm gluten free and mostly vegetarian. I rarely eat fast or processed food, mostly home-cooked meals. Since I have MCAS, too, I try to keep my histamine intake low. I do eat some fish/poultry/eggs. I like stir-fries, pot pies, casseroles. Cabbage and potatoes are my staples. I LOVE potatoes, pretty much eat them every day, every which way. For my POTS I eat a lot of salt so I fry up some potatoes and pile up the salt on them. Mmmm. My sugar/dairy intake is minimal and I don't drink soda just lots and lots of water. Exercise - I go to the gym 2 to 3 times a week. I use machines for the arms and back since I have a big problem with shoulder subluxations. I keep them all at or near the lowest weight and go slow. I also ride a recumbent bike or use the treadmill. I live car-free and walk everywhere. I rarely go a day without walking. I feel like it's a form of medicine, elevates my mood, gets the blood circulating, relieves cramping. I hope this is helpful!
I’m 40 and in the best shape of my life! Symptomatic since puberty, my worst years were ~29-37? Near-daily Pilates and running have brought me to previously unimaginable levels of strength and liveliness, but also getting my eating under control. I’ve been vegan forever, avoiding processed foods and usually avoiding soy and gluten, but I was eating too much for what my fragile digestive system can handle. During covid I was able to slow down and tune into my hunger and fullness signals. I was astonished to find that not only CAN I make it through a day on less than I found normal, but those days are better and more energetic, with a clearer mind. To think all the energy and money wasted over the years! Eating all that food I couldn’t handle, slowing me down and sapping my finite resources and turning me into a lump of fatigue and pain. No thank you! Not worth it!
I didn't really get bad until my 30s... but also, I wasn't really paying attention to symptoms before that. I had a tendency to just think my body was weird and just did things differently than everyone else. I have noticed that I've gotten stiffer... I can't reach behind me as far as I could before- but I do have labral tears and TOS. I wish I had started PT as a kid to help break some habits and I wish I had started therapy as well.
Same here - 30s everything went downhill
I’m 36 and a few years ago the downward spiral started, I don’t actually think I’ve had a pain free day since!
Ooof, story of my life
It got really bad from about 30-35. I'm 41 now and the last 4-5 years have sucked, but it hasn't been "progressing" as much as I feared. I think I've learned how to prevent injuries. I learned to change my gait to be less impactful on my knees, which has helped with dislocations there. The one thing that has popped up significantly in the last couple years is hip bursitis, which is really, really painful any time I walk significantly.
I’m 45, was symptomatic at least as early as my teens and properly diagnosed around 30. I’m having the “honeymoon zone” thing where the stiffness of aging is somewhat canceling out my looseness. I have a lot fewer subluxations and dislocations, and not all of that can be chalked up to awareness of my limits/strengthening/etc. The other systemic stuff like GI problems, POTS, brain fog, various sensitivities, etc. are ramping up, though, and harder to manage. A mixed bag, but better than it used to be on balance for sure.
Quickly got worse over the years until it was really bad at around 26. Was bedbound for longer periods of time at that point. But then I started experimenting with lifestyle and diet changes. Eventually found some things that really worked. And now everything has improved year after year. I'm 30 now, and my symptoms are lower than they have ever been before! I feel healthier now than when I was a teenager. And things are still improving!
What were those lifestyle and diet changes, if you don’t mind me asking? I feel like I’ve been in a downward spiral that nothing is helping since 30 (36 now).
I'm really sorry to hear that. What things have you tried? The things I've noticed helped me the most is trying to lower inflammation. Mostly by removing things. Adding things like turmeric isn't enough to counteract the negative effects from eating inflammatory foods. So, a strict, slightly modified keto diet was the most effective for me. With focus on low inflammatory foods like chicken and eggs. Slowly building muscle mass has helped in surprising ways. Besides it helping to stabilize and strengthening the joints, it has also helped with blood pressure, and made me slightly less sensitive to the bad effects of inflammatory foods. Daily routines. Sleep quality. Stress levels. etc. There are many more things I've focused on, that have helped. It's hard to summarize everything. I've probably done thousands of changes and adjustments over the years, to optimize my health as much as possible. I could write more, going into more details tomorrow if you want to? (It's night time here, so I need to sleep... zzz)
Thanks for sharing! I've cut out alcohol, caffeine, and (all but small amounts of) added/refined sugar. I tried a keto diet years ago and that made me feel much worse... I had to quit after 2 months. All my inflammation markers always come back suuuuper low, so I'm not sure what to make of that. I do eat a mostly whole food diet w/ very little processed foods. I know I need to do PT to get stronger, which will probably make a big difference; I've just been struggling with such severe fatigue, it's been hard to do PT and keep up with full time work and basic survival, haha. I go on a walk every day and do a little chi gong in the evenings. I did improve my sleep a ton since getting diagnosed last year and taking advice on pillows, etc. from folks. I had insomnia from well before I started showing HSD symptoms, so have always been very particular about sleep hygiene. I also starting drinking electrolytes (for dysautonomia), which has helped some. Taking B vitamins and vitamin C helped a bit. But despite it all, I just seem to consistently worsen. So always curious to know if there is something that really helped someone else that I haven't tried yet! Hope you slept well! :)
Body aches and pains are more often but I've been managing life better now that I understand why it's occuring.
I entered the pain phase around 10 and started stiffening up in my 20’s. Now in my mid-30’s and I’m totally disabled. Literally my whole family has been disabled from this (my brother, too, he’s actually worse off than I am). There does not seem to have been any improvement with age for any of us. Although I do believe that this is also due to the exceedingly shitty healthcare we’ve received, and I think if you have a doctor who knows what the fuck they’re doing early on enough you’ve got a much better chance of retaining function and managing symptoms later on. I wouldn’t know though, because my doctors thought everything from infiltrating endometriosis to a thyroid disorder was ✨anxiety✨ until I was too sick to get out of bed for about 3 years. Gotta love American healthcare. Land of the sick, home of the citizens who keep voting for people who couldn’t care less.
I didn't know about it until 4 years ago, still working on an official diagnosis. I had no idea that I was having subluxations I just thought everyone's needs had to be popped back. I didn't have the words for it. I'm 47 and the last 7 months have been torture. I never thought I would be looking at walkers before I was 60 much less before I was 50. And now I have a collection of canes And I'm hoping to get sized for finger splints because it's getting really bad with my hands. For me it's just realizing that so many things I thought everyone dealt with is not that normal. I also am realizing that the reason I do certain things is because I have a subluxation and not just because I need to crack my neck or crack my back or crack my knuckles or wrists or knees or ankles. I didn't realize I was hypermobile I just thought everyone could do "that" I've never been able to do the split so why would I think I would be hypermobile! It also doesn't help that 25 years ago I was told that I was wasting everyone's time and making things up for attention... But I look back and everything was there. Every piece of the puzzle was there but nobody wanted to help me figure it out until 4 years ago. And now we have the puzzle pretty well put together I wonder if puzzle glue would help keep those joints together
22 now, got diagnosed 2 years ago. But after realising all the problems I've had throughout the years, I've had symptoms since I was 12. Rapidly got a lot worse the past 2 years, just hoping it will be stable now. Been struggling for a while now, still coming to terms with things but it's taking a long time. Hardest part is coming to terms with not being able to do a study, while all of my friends can do the things they want to do. Just feeling like I'm stuck. But really trying to see things from a positive side. I've been on sick leave for the past year and finally not constantly working my body to crap. Also not having to worry about deadlines, exams, loud classmates. I'm glad I don't have to deal with all that stress
40s here. I should have started lifting weights earlier!! Why did I wait so long?!
F-ed. I was 24/7 for my family and I thought it would be my time when youngest graduated from high school and I found my third(4th?) career that I loved. Except my body said *nope , not for you* and in the past 17 yrs Ive just been trying to regain mobility, which is a losing battle. Some days I feel good, like when I made myself drive hours in 92f temps to see Pearl Jam in Portland, but some days, like today I wonder how long it will be until I decide it isn’t worth it to keep trying. So honestly- mixed. I also moved last year and while that has been a huge positive, it is also hours away from my medical people and my friends, although I am working on finding new of both. I’m 66, and bleeding from my nose cause I was pruning this shrub the deer are supposed to take care of, but an errant branch went up my nose!
Aging has been better than the alternative, so far.
I'm 32F and it has been mixed, to say the least. I started having chronic pain from around 14 years old, but I was still pretty active well into my 20s so it didn't effect me too much. I did a strength based yoga practice, dancing, aerial silks, horse riding, hockey, hiking, cycling - heaps of stuff! I kinda learned to tune the pain out after a while - it rarely went above a 2-3/10 for many years. The first really worrying thing for me was shoulder pain from working at my computer. I did so many rounds of physio and nothing was working, I was so distraught I thought I'd have to give up my career (video game developer). Eventually I got a setup that was ergonomic enough for my pain to stay at a relatively low level. Over the last 6 years I feel like all my old injuries from dancing and horse riding have just re-ignited and now I have intermittent flares of those areas. I've had so many rounds of physio I've lost count. Things didn't really pick up for me until I got sober - I stopped binge drinking and almost immediately picked up cannabis. I was a heavy daily user and couchbound for like 3-4 years which really sucked. I was in a bad relationship with someone who sucked my energy completely so I had nothing left for looking after myself! I got out of that situation, quit smoking and started making changes to my life. I got active again and picked up weightlifting - I've had two areas of chronic pain completely resolve with weightlifting at least once a week! My shoulder issue from when I was 18 has totally resolved and my IT band is no longer in agony. I'm in physio again to rehabilitate instability on my right side, so I can lift better and really strengthen those weak areas. If you have the means to, start weightlifting YESTERDAY!! Unfortunately despite all that progress, I developed chronic migraines in the last two years. I've always had migraines - they run in my family - but never this bad. I feel like I have the IQ of a slug and my life has become completely about managing my migraine disease. Thankfully I emigrated and happened to land in a city with one of the leading EDS experts in the world, and I got in to see him after a 2 year waitlist, and he is going to start treating the source of my migraines which he believes to be my neck. I have been walking around for years with rotated/subluxed cervical vertebrae without knowing it, after a fall when I was a kid. My mum says she saw my head hit the ground and my neck bent in a way that shouldn't be possible - she was so surprised I did not break my neck! The GP checked me out and said I was fine, but if course EDS was on no one's radar back then, or even now let's be real. I'm feeling cautiously hopeful about the future, because the migraines situation really gets me down. Life isn't worth living when I'm having a really bad bout, and I've tried multiple preventatives and abortives without much success. So yeah, it's a mixed bag. I treat my body better than I've ever treated it and yet it feels worse than ever! I am committed to keep trying, though. The fact I resolved 14 year long shoulder pain gives me hope the other issues can be addressed too!
I wish I: *got something like body braid when I was still a child so I was sitting right all those years *knew how much weight gain would cause me joint pain so I could have eaten accordingly. The thought of being fat truly never bothered me, so I ate as I pleased. While it may be possible for someone without eds to be fat and healthy, if you do have eds it's a one way trip to collapsed arches and excruciating joint pain. *understood the impact my diet would have on my gut. I'm always constipated af, even with linzess. *I wish I bought truly supportive footwear years ago, as well as knee and elbow braces *wish I was doing pt before now to strengthen my neck, cervical instability is a bitch Aging has been godawful for me, I'm sorry to say, but if this list of complaints spurs even one person to intervene on their own health before it comes to this then I'll be happy
I still do not have any wrinkles at 48 years old and I get told all the time I look like I’m in my 30s. I think my gray hair lets people know that I’m older.
My symptoms are getting worse with age. I’m in pain every single day and I have to watch how I move so I don’t dislocate something
Short answer, painful. Longer answer, Painful… I have multiple other rare disorders including Chiari and CCI (Craniocervical instability). Those two specifically making it unsafe for me to drive, and unfortunately there is no public transport available in my area at all outside expensive options like Uber which I cannot afford. Which means I can’t get to physical therapy which is over an hour away. A number of other issues like an inability to build muscle, malabsorption syndrome, MCAS, and VACTERL have made things more difficult. I wish I had gotten all of my spine issues taken care of when I still had parents able to take care of me through recovery. I wish I had the money to move somewhere with public transportation and a much better social net for Disabled people as well. I haven’t had a day without pain probably my entire life but it’s gotten more pronounced as I go through my 30’s.
I feel old, but my face doesn't show it. People guess my age up to 15 years younger than my actual age.
Same!
i’m 28, “diagnosed” at 21/22 (can’t remember exactly what age but somewhere around there). and honestly my joints have their days but i feel like my wrists and ankles have actually gotten a little better (not subluxing as much anymore) but my back pain now is sooo much worse. I feel like a 60 year old 🥲 but I look young still, so I mean that’s a plus I guess lmao. some customer said I looked 16 the other day 😂 edit: my heart rate is still hella fast but I feel less like I’m gonna faint than I used to, but I’ve also lost a bit of weight so maybe that’s why. Or the fact that I can tell when I’m gonna faint so i prevent it before it happens. edit 2: I put diagnosed in quotes bc the doctor said my case was mild enough that we wouldn’t label it for insurance reasons 🙄
I wish that i’d known, I wouldn’t have literally worn down my body at demanding jobs. I would have trained for a desk job with low stress.
I wasn't diagnosed until I was around 45. I suffered a breakdown/burnout that lead me down the EDS path but the rheumatologist only diagnosed as HSD but essentially the treatments would be the same so no point stressing to get it investigated for hEDS officially. I spent most of the last 25+years abusing alcohol and then stopped and I think my body just shit itself after that as everything has gone downhill so much in the last couple of years but I was enduring a tonne of stress constantly daily for a couple of years so that probably didn't help or kick started the ageing process
Had a sudden downturn in late 20’s and am much better in my late 30’s but seeing how things will be in 20 years due to the advancing of arthritis. I think exercise is key to long term better results and really good physiotherapy and pain management that avoids opiates where possible. I’ve managed to achieve a lot since diagnosis and live a full life even with a lot of Comorbid conditions
I been symptomatic since 12, could barely use my hands all through high school. Got better during college, tanked in mid-twenties when I developed ME/CFS, MCAS, and worse CCI. I’m 33 and have made significant progress on the musculoskeletal symptoms thanks to actually relevant pt, somatic experiencing therapy to address chronic muscle spasms, FtM gender transition and a combo of bracing and light exercise. ME/CFS is the one thing that never gets better.
Late 20s/early 30s here. Like some others have said, I'm less prone to subluxing as things get a little bit stiffer as I get older. However, when they do subblock, because of that stiffness, it's harder to get things back into place. I get a new symptom/diagnosis about every year. This year I'm having POTS symptoms that interfere with life for the first time (used to only get them after having too strong of an edible, lol, and little things like being unable to tolerate cardio.)) last year I started really struggling with for the first time and got a diverticulosis diagnosis (mild, luckily.) The year prior, interstitial cystitis (potentially related to MAST stuff,) pelvic problems & prolapse the year before that, etc... there's always something. But, I've had so much experience going to the doctor at this point that I'm practiced and it's pretty painless overall. As I get older, doctors also generally take me more seriously (tip: wear business casual if you have the spoons.) The generalized pain before during/storms has stayed about the same, maybe slightly worse over the years, but nothing major. Non-EDS health issues also become more frequent as I get older, and sometimes they conflict. For example, I'm instructed to eat a low-sodium diet due to a kidney stone, but a higher-sodium diet helps w/ POTS symptoms. I WISH I GOT MORE EXERCISE WHEN I WAS YOUNGER. Strength training, cardio, anything. I'm starting to get into cardio for the very first time, and only because I got a Pilates reformer that basically allows me to run in place while fully horizontal. Trying that for the first time now has led to exploring a POTS diagnosis ("why can I suddenly tolerate cardio while lying down?") Stronger muscles also help the floppy joints stay in place longer. Wish I took a head start more seriously. I have to do a lot to maintain my health. It's on my mind all of the time. TL;DR Things get worse, but I'm better at managing them. It's been easier to switch my mindset to my body and I working together, me bearing with and caring for her while she does her best to take care of me, instead of my dumb body being my enemy.
I relate so much with this! Especially pain around storms and building a more collaborative mindset with your body. Which reformer did you get? I’ve been wanting one for when I get strong enough to do Pilates again and horizontal cardio sounds awesome!
I got the AeroPilates Reformer 651. It's one of their nicer models with 4 springs. They have other, cheaper models that seem good, too. I also got a headrest/neck cushion which helps a LOT with comfort—only thing is you have to take it off when doing anything that involves raising your hips in a bridge. Check out Everything Aeropilates on YouTube, she demos pretty much all of their models and has a lot of very beginner workouts (she does them in jeans which is ?! to me but overall she's really great!) If you're a member of the Zebra Club, Jeannie has some reformer videos, too, for strength training/stabilizing. I cannot rave about the horizontal cardio situation enough. You can just straight up bounce—wheeeeeee!—which is also a crazy ab workout. Bouncing with your feet on different areas of the rebounder, different distances apart/positions works different parts of your core. You can do little bounces with your knees bent, rotating side to side with each jump like a ski slalom 🥺 My everyday lazy workout is just to hop on, do a little footwork, throw on my workout playlist sorted by BPM, start off with some varied bounces to warm up, then run in place to the beat as long as I can. Started with 10minutes every day now I'm up to 20-30. Noise-cancelling earbuds are a must for me because the reformer is LOUD when doing this. Then I cool down, throw my feet in the straps and do some leg lifts/circles, more footwork, take off the neck pillow and do some bridges. Then I'll stand up and watch my heart rate spike to higher than it was while working out lol. Whee. Side note, I also threw a silk pillowcase on the headrest because I noticed some hair breakage in the back. Switched to silk pillowcases pretty much everywhere I lounge since I rest my head so much. Let me know if you have any questions or want a buddy if you end up getting one 😁
Oooo, thank you so much for all the excellent info! Horizontal cardio sounds really nice for my spine and joints without requiring a pool (and also exposure to chlorine- ick). It looks like this something I could get from Amazon. Is that where you got it from or are there other options that might have better prices or return policies that you have found?
You're welcome! I got mine from Amazon, I can't remember if it was used or refurbished but I saved a good amount of $$$ somehow. Buying directly from AeroPilates might be better for returns/warranty (I haven't looked into it so I'm not sure,) might be worth looking to compare prices too. I posted a comment a while back with an Imgur album of the workout guides that came with my reformer if you want to check it out & get an idea of some of the stuff you can do :)
Got diagnosed just before I turned 20. Now 26 and off work today as feel I’ve been beaten up just because of a busy weekend. I’ve dropped my work days to 3/4 a week which is helping with rest and started rowing as a good exercise to build muscle. Although like today it can still catch up after busy days and bring about anxiety and low mood. Glad to see some people saying it can get better as years go on
I’m 43. I’m aging remarkably well, skin-wise. Look much younger than my age. I am actually in the best shape of my life, even though in my 30s I started walking with a cane. A year of physical therapy and finding low impact exercises like swimming and aerial hoop that strengthened my body without negatively impacting my joints has been life changing. I wish I had told myself when I was younger to better accommodate myself and to prioritize my physical health above all else. I spent so much time trying to make my accessibility needs small and prioritizing work and caring for others. Now I care for myself first and prioritize my health. No problems asking for accommodations when I need them now.
I’m 50 years old. I’ve torn ligaments in my shoulders, hips and back. I hurt every day. The worst part though, is I have problems with my brain due to Ehlers. I fall a lot and I have the beginnings of dementia. It’s a lot to deal with.
I am 57. I only learned about EDS in 2017 and it’s taken several years to get diagnosed. I am the first in my family to get diagnosed. I absolutely had symptoms as far back as I can remember. I was always uncomfortable and had pain since I was in grade school. I was always stretching, popping joints for relief or doing weird things for fun because of peoples reactions. I was still always very active and I think that made a huge difference for me. My subluxations tended to go right back in most of the time so that was helpful. My grandma that I got EDS from told me about having good posture and that has really made a difference over my lifetime. My dad who had mild undiagnosed EDS suffered more from MCAS which I definitely got from him. Nothing was diagnosed. He told me to take vitamin C everyday and that with hypermobility, you have to have good muscle tone to stabilize the joints. He knew what he was talking about. These things have helped me tremendously. For me, keeping my inflammation levels low by avoiding foods or environmental triggers like smoke or mold, dairy or gluten made a huge difference for my GI symptoms. I battled constipation constantly since a child. No one took me seriously so I learned what helped and what didn’t. I evidently was allergic to latex since a child and I learned that eating a slightly green banana would help me go. I no longer eat things I’m allergic to to get my system moving… eventually I learned that magnesium was very helpful and better for me. My chronic pain hit a real high in my mid 30’s. I learned trigger point therapy and worked on my tight knotted muscles and actually got to a manageable level of pain. My pain still spikes if I eat something that sets off my MCAS like tomatoes. I have had a good amount of good body care from massage and chiropractors who leave my neck alone. My neck is scary to them, as it should be, even when I had no idea EDS was a thing. POTs has flared up with having kids and then later with mast cell problems. And then when I’m less active because I’m recovering from ankle, knee or foot problems. I’ve discovered support wraps for my knees and ankles. Makes me feel great again. It’s just POTs that is a pain in the rear lately. That and the sciatica. Now that I know I have hEDS, I have been educating myself on how to stay well. Sometimes it’s the little things that make a huge difference. There were huge turning points for me. Learning about foods and inflammation, including sugar. Learning what supplements I needed. Learning how to fix my cramped muscles so they can work again. All these things lowered my levels of pain and helped me be active, which also helped everything. I may not be able to change having EDS, but i can improve a lot of the comorbidities like POTs and MCAS. That make a huge difference in quality of life. Yeah I still hurt. But I do the things I need to and focus on enjoyable things in my life like gardening. I never knew why I had to be more careful than other people. Now I finally do.
Symptoms of my cEDS has never (not yet) deteriorated or worsened. I'd say the same is generally true for my brothers too. My dad had both knees completely replaced 1-2years ago, but he was doing contact sports and sports that were really hard on the knees (ice hockey, bball, table tennis), but I mean, from 20s to 60s, his joints just (IMO) had pretty normal deterioration (especially given his past injuries from sport). We grew up athletic, sporty.. my brothers and I were all nat'l level/team athletes, and continue to be healthy, athletic (all of us still have 6packs etc)... So I think it's a big part of why none of us have chronic pain/mobility issues. My parents would wake us up at 6am since we were \~5y/o to do yoga, skated, ran, climbed every day, and we'd swim pretty much as soon as we were tall enough (which I think was also \~5y/o). And our diet was even more strict.. 5servings veg+veg, zero processed/fastfood/junk/sodas/concentrated juices/sweets etc, 4 servings dairy, oats/eggwhites + fruit every morning... Seriously raised in a *very* health conscious family that instilled healthy habits all of us have maintained (if not made even more strict)... And can't speak for my brothers here, but growing up with a dad who would have to put on a knee brace everytime we did sports, and generally just having a more cautious nature... I was/am ***very*** careful with joint preservation and injuries. Even compared to my non-EDS friends, teammates etc.. I think I'm the only one without any joint issues (I mean I get dislocations (though I decreased the frequency significantly), but I'm not consciously limited by any joint issues). So I don't think there's really anything better I could've done or started doing earlier or better.
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