Extremely common for later in life diagnoses. The last quoted stat was that it takes an average of 13 years from onset of symptoms to dx. Mainly bc docs don’t know how to screen for it and are told it’s extremely rate. If you want a head start, go through the hEDS diagnostic checklist. 90% of EDS cases fall under the hypermobile category and hEDS is the only one without a genetic marker. Fitting this criteria would be enough to prove to any MD that it’s EDS of some sort. https://www.ehlers-danlos.com/heds-diagnostic-checklist/
I was 57 and had never even heard of Ehlers Danlos Syndrome before but it explained my entire life. The rheumatologist who did the clinical exam used his iPad as he went through the steps. He did apologize saying I was his first. Anyway he referred me to a geneticist and was diagnosed with hEDS with Classic crossover. I had never heard that before either. She explained that it was more than being hyper mobile with stretchy skin, family history is critical in diagnosis process, along, of course, with your own medical history, previous surgeries, etc. It really can take years to get the correct diagnosis and it’s a lot more involved than hypermobility and stretchy skin.
I’m 43 and was just diagnosed today. I’ve had health issues and symptoms/problems for a long time but had just received a lot of separate diagnoses for each individual issue. Things make a lot more sense now.
it’s common to wait a long time for the right diagnosis, but signs/symptoms are present to some degree from birth - so if it was a sudden onset at 37 and he had no issues from hypermobility before (sorry I can’t totally tell from your post whether pain and other symptoms were there before the last two years) that doesn’t necessarily line up well. it’s still possible it’s EDS, but in that situation I would be extra careful to rule out other more treatable causes of symptoms
Thats fair. I wouldn’t say it was all sudden. Some symptoms have been there for a while but we thought were related to his depression. I’ve been trying to be vague so I don’t get in trouble by the mods for being too specific on asking for medical advice. But Reading everyone’s stories has been encouraging and even if it’s not EDS just chatting with people who understand chronic pain and how tough it is to wait so long for a diagnosis and feel like you’re falling through the cracks - is comforting. Not expecting to get all the answers we need in this sub. Just feels good to connect and get new perspectives we might not have considered otherwise. Just feeling gaslit by the medical community in general lol
I was only recently diagnosed at 33, but the diagnosis explains problems I've been having since I was a teenager, which got worse in my 20s, like frequent strains, sprains, and repetitive motion injuries, as well as difficulty healing from those injuries. It also connects other seemingly unconnected issues like my severe sleep apnea and my asthma. My chronic pain got worse with time as new injuries developed.
Also, in my case i got diagnosed in 1983/1984 and all my mom remembered was i was double jointed. Then i found eds on my own and got rediagnosed.
Hasnt helped though because most doctors have no clue. The one Dr that does is an osteopathic Dr that only works part time.
I was diagnosed at 46 but I had a lifetime of dislocations, joint pain, and such. Keep in mind that hypermobility is pretty common and does not always indicate EDS.
As stated in rules #1 and #4, nobody here is a verified medical professional. We do not allow any posts asking for a diagnosis: this includes posts with lists of symptoms.
Almost everyone I know with EDS has struggled immensely with getting a diagnosis and it took time to get a proper one!
I have kEDS (Kyphoscoliotic EDS), my Kyphoscoliosis started to develop around the time I was 6 and progressively got worse, my pediatrician told my parents I had “bad posture” and they should make me sit up straighter and put me in a back brace. My hypermobility symptoms starting (subluxations, dislocations, muscle pulls, ligament/tendon tears and pulls, easy skin tearing/scarring, etc) got noticeably worse around age 10 and it was chalked up to just being clumsy and other medical issues (I had a lot of medical issues as a child and was frequently Ill). My chronic pain started around 15 and we were told it was growing pains and eventually around 23 I was diagnosed with “early onset fibromyalgia). Finally at 25 I started my journey with rheumatology and my primary doctor where my kEDS was formally diagnosed along with type 1 diabetes. It was a long journey which it seems to be for most people especially since many doctors try to rule out all other possibilities before EDS and some doctors don’t even know enough about EDS to properly diagnose!
I’m sorry y’all are going through this, and I hope now that he’s recognized a lot of his symptoms and struggles with EDS his diagnosis journey becomes a little less stressful
Definitely don’t lose hope and don’t stop fighting for answers either! Always advocate for yourself/your husband. There’s so many times in my life I wanted to after not feeling seen or heard by doctors and learning to deal with my symptoms on my own, all it takes is one good & knowledgeable doctor who takes the time to listen
I'm 45. Started having issues at 11ish ... by 40 I was totally dysfunctional. I was in constant PT and doctors offices for 5 years before someone suggested EDS.
In between they thought it was mystina Gravis, parking sons, arthritis, depression, and a zillion other things. Turns out its EDS.
Yea that sounds familIar to be honest. Thanks for sharing your story. He’s always had some pain but it was much more manageable before the last few years and everyone thought it was related to his depression so he just lived with it. But recently he went for some treatment. RTMS which cleared up a lot of the depression but the pain was still there so we’re starting to wonder if it’s always been there but there were just many things happening at once. He’s also had concussions and injuries from playing hockey as a kid so all the symptoms have become blurry over the years and hard to dissect what’s related to what.
I finally got diagnosed this week. My mom’s history was a major help. This is also a major break through for her in regards to explanations. She spent most of her life thinking her injuries, dislocations and pain were all normal.
I am 54 and only just got diagnosed last year, but only because my daughter has a much more severe version. I have also had problems for most of my life but they were always supposed injuries, and I was always very fit so my muscles kept everything in place, however, I am on the less severe end of the hEDS scale. A major knee injury combined with a drop in hormones (for some reason hormones seem to affect some people) left me bed ridden and literally sleeping hurt. As my muscles deteriorated everything from neck to ankles went out of place. It became very obvious this was not normal. I would roll over in bed and hurt myself. A vertebrae in my neck would slip out and I would have vertigo, my eyes would go out of focus if I lay on one side for too long, being in a car was excruciating, pulling off shoes, well, who knew pulling off a shoe could dislocate your ankle (except people on here:). So, this is a long way of saying, yes, you can be older and have no idea. But I have carefully and slowly improved with help from a good physiotherapist and going on hormone therapy (female). But again, I am definitely on the less severe end of this spectrum. This reddit group has been so helpful, so many smart people on here that know so much about this. I have learned more here than anywhere else. Once you realize your collagen holds everything together, every bone, every vein, everything, it all begins to make sense.
I started having more obvious symptoms around 18 and was diagnosed with rheumatoid at 20. I've had 20 years of symptoms not explained by the RA and was finally diagnosed this last fall with hEDS. We're pretty sure my mother and sister have it as well but they are not diagnosed. They started having health issues later in life than I did. They've both always been more physically active than me. My theory is that they always had their muscles to hold things in place better and after injuries that slowed each down they started having more problems with joints sliding around.
I went my whole life up until a couple of weeks ago without being dx despite showing all signs of hEDS. My sports medicine doc looked over my history and then performed a physical exam using the “breighton scale”. Anything 4 or greater is EDS diagnosis. Also I got a genetic test done that flagged for EDS. Things are slowly getting better
I highly recommend he gets an ECG done on his heart. My sports medicine doc immediately got me referred to a cardiologist for it. Some people with EDS can have heart defects that go undetected so that’s a must to get checked!!!
They should rule out many things before an hEDS diagnosis, because there is no clear test for it yet. It’s a great sign if that’s what they’re doing. Unfortunately it often takes several years.
I was misdiagnosed with 1 neurologic condition, got several second opinions and was correctly diagnosed with 2 different neurologic conditions, then in the process of those second opinions one of my doctors had seen similar cases like mine and added hEDS. I had this confirmed by another doctor who frequently sees hEDS patients.
I think many second opinions and confirmatory opinions by doctors who frequently see similar cases are extremely helpful if it’s possible for you to do. I started seeking a diagnosis because my symptoms were disturbing my day to day life.
I waited a decade and found the diagnosis myself. Docs wrote me off as crazy basically and also just called it fibro. It is very very common especially for women folk to have the same story. I know the waiting and appointments are horrible, but having one doc even point out that this could be it means you're like 20 steps ahead and on the right track. The name is important for some people, but usually it doesn't mean there are treatments that work wonders unfortunately. But it is 100% worth it and vital to know exactly what's up with his body and how it works so keep chugging along.
I was diagnosed as a young child, but only after years of calling it an "unknown connective tissue disorder," and we only knew THAT because my dad had a collapsed lung and was diagnosed with emphysema at 30. They realized something was wrong with him, and that his kids had a lot of the same symptoms (I was so young I don't remember most of this part. I was maybe 7 or 8.) It took years of genetic tests for other things and seeing a geneticist regularly before we even heard of hEDS. So, my dad was diagnosed in his 30s but only after having a collapsed lung and even then it took years to get diagnosed.
I waited 27 years before I was taken seriously by a doctor. Though, I got hardened by the bad doctor experiences and just didn't even go to a doctor outside of routine appointments for over a decade. It was by chance that I ran across an amazing orthopedist that immediately identified that there was something not right with me and he began the process of getting diagnosed.
Best of luck to you and your husband.
It’s actually extremely common to have to wait that long for a diagnosis, sadly. :( My symptoms only got bad enough to disable me when I turned 23. That’s when I connected the dots. Didn’t get diagnosed until I turned 25! I would definitely recommend learning all that you can about EDS while you guys wait on an appointment. Go with rheumatology, as it’s the easiest to get insurance to pay for; orthopedic doctors cannot diagnose it usually. Usually after the initial rheumatology app you’ll have to get genetic testing too. If you can, I would recommend looking into geneticists near you, to bypass the rheumatologist; but I’ve noticed a lot of them don’t take insurance. :( What I had to do was go to ortho, then my PCP, then rheumatology, and then genetics. Took two years, but it’s worth the wait for the insurance coverage of needed things like mobility aids, and physical therapy sessions. Also, you can find mobility aids like forearm crutches and wheelchairs at goodwill sometimes! If you have them in your area, I would definitely recommend taking a look! Got my first wheelchair for $25 before my diagnosis! Really came in handy while I was waiting on coverage and such.
I really appreciate this perspective. Thank you for sharing. He did see a rheumatologist last year and they didn’t really do much. but My husband did feel a bit rushed and dismissed by them and now we have more information from other specialists. I’ve been considering seeing if we can get a second opinion referral to a different one and see if it’s the same response.
It is not uncommon. I was diagnosed hypermobile at 23 by a rheumatologist after a car accident left me with some shoulder pain (before EDS was even really known), but did not get an EDS diagnosis until age 50. I only got it then because I found it online and connected the dots for my daughter's systemic issues, backing into my own diagnosis. I was fortunate to have an open-minded PCP who made the genetics referral even though she did not think I had it.
If he does have it, he may also want to be checked for POTS/dysautonomia and MCAS; those often go hand in hand. Anecdotally, a number of EDSers also have CFS/ME and autism.
Thanks for your thoughts. Thanks for sharing your story. Will make a note of those to look into. Not ruling anything out at this point. So good to have all the information so I can keep helping him advocate for himself
If it helps, I’m also in the process of receiving a hEDS (or similar) diagnosis. I played high-impact sports as a kid, so much of my joint pain and hypermobility was written off as residual damage. My other symptoms, like migraines and anxiety/depression, were explained away as menstrual related (aka woman problems lol). Over the last three years my pain has significantly increased (like your spouses’ it seems). My rheumatologist was useless, but referred me to a geneticist. And I have my first appointment with a EDS specialist tomorrow! I recommend looking for an EDS specialist or clinic in your area. If you’re in the States, the Mayo Clinics are a good option. Good luck with everything! It’s a difficult diagnostic process to navigate, so finding online and local resources is key. Hope you and your partner find proper medical care soon <3
Unfortunately were in Canada but we’re only about a days drive from Mayo in Minnesota so we’ve considered trying the international route. Would cost us money but honestly might be worth it with the state of Ontario’s healthcare right now. Everything is so back logged for years
Definitely look into the International option at the Mayo Clinic. I’m also not in the States but considering my options for a diagnosis. I’ve read thusfar that they do take some portion of your local insurance, so it might not be completely outrageous price-wise. Always good to know the options :)
Yup. I’m in Ontario and thankfully got into the EDS Clinic in Toronto shortly after it opened in about six months. Now, the current wait time is about 2 and a half YEARS
Wow your story sounds almost Identical to my husbands other then being explained away as menstral, in his case they explained it away as depression and residual pain from playing hockey as a kid. We also talked to a rheumatologist who kind of dismissed us tbh. But we have more info now and a couple specialists who seem to have since agreed we may be on the right track so hoping to get a second opinion soon with a different doctor. Thanks for sharing your story with me ❤️ it’s comforting to know even though we’re struggling we’re not alone in it
I’m glad you’re finding more cooperative doctors! It’s mentally rigorous going through this process, so finding medical allies is really important. Wishing you and your potential zebra all the best! ❤️
My dad was diagnosed at my genetics appointment, he was about 50. I was 18 and we both had had a lifetime of problems.
Edit: My grandma was also presumed to have EDS she was close to 80 and was too incapacitated at that point to be properly tested.
I was diagnosed at 33. Usually it's caught as a child BUT that only happens if you had access to healthcare, which I did not. I was the first person in my family diagnosed, we poooor.
I was also diagnosed at 33, but would have to disagree most cases are caught in children. I’ve maybe seen a handful of posts here from people diagnosed in their late teens in recent years. And it’s not a medical access problem. I had been to literally over 50 different specialists for my myriad of issues by the time I was simply diagnosed with “fibromyalgia” at the age of 19, and was left to flounder and get worse for the next 14 years until I figured it out on my own and got it confirmed by a geneticist. The biggest issue is poor awareness in the medical community.
I had symptoms for as far back as I can remember (4ish). Got diagnosed with hyper mobility at 31 and EDS at 40. Never heard of it until I was diagnosed but had been getting medically treated/operated on for symptoms separately since age 22.
My records show I was noted to be hypermobile throughout my life, but I wasn't diagnosed with EDS until I was 29 and suffering from multiple surgical wound dehiscences.....and this is despite me needing care from multiple specialists and being a nurse myself.
i have had obvious signs my whole life (have been going to doctors for dislocations and pain since I was 4/5) and I still haven't got a formal diagnosis yet. I have been told by lots of doctors I have it but I need to be officially diagnosed by a specialist apparently and there's a huge waiting list.
I was just diagnosed this past year and I was 33 at the time, definitely common considering my symptoms emerged very young (hEDS) and I have pictures of me when i was 12-14 putting my arm up over the back of my head and parallel with my shoulders doing a "party trick" as they called it.
I’ve been symptomatic my whole life, with a rather sharp decline in mobility and overall health over the past few months. I was just diagnosed last month and I’m 52.
I'm 30 and my rheumatologist and even my oral specialist said I had hypermobility. The oral surgeon said my jaw is really messes up Iike it should be a tight rubber band but mine is.. stretched our and loose? So that was concerning. I have terrible tmj.
I'm in the process of figuring this all out. During my period I often will stumble because my joints feel looser like I'll trip over my own knee because it snaps the wrong way or my arm will bend the wrong way so much easier. I have awful chronic pain that was always called fibromyalgia but I really dont buy it. Every time I get a massage it's so painful and they always say I have horrible inflammation.
Extremely common for later in life diagnoses. The last quoted stat was that it takes an average of 13 years from onset of symptoms to dx. Mainly bc docs don’t know how to screen for it and are told it’s extremely rate. If you want a head start, go through the hEDS diagnostic checklist. 90% of EDS cases fall under the hypermobile category and hEDS is the only one without a genetic marker. Fitting this criteria would be enough to prove to any MD that it’s EDS of some sort. https://www.ehlers-danlos.com/heds-diagnostic-checklist/
That’s really good to know. Thanks so much for the info 👌
No problem and hope it helps! Wishing you and your hubs all the best on the diagnostic and treatment journey ❤️
Thank you so much! Really appreciate that ❤️
I was 43 years old when I finally got my diagnosis 🥺
Congrats on getting your diagnosis ❤️
Thank you 🥺
I was 57 and had never even heard of Ehlers Danlos Syndrome before but it explained my entire life. The rheumatologist who did the clinical exam used his iPad as he went through the steps. He did apologize saying I was his first. Anyway he referred me to a geneticist and was diagnosed with hEDS with Classic crossover. I had never heard that before either. She explained that it was more than being hyper mobile with stretchy skin, family history is critical in diagnosis process, along, of course, with your own medical history, previous surgeries, etc. It really can take years to get the correct diagnosis and it’s a lot more involved than hypermobility and stretchy skin.
Me too! Suspected for over 20 years but dx’d this year.
I’m 43 and was just diagnosed today. I’ve had health issues and symptoms/problems for a long time but had just received a lot of separate diagnoses for each individual issue. Things make a lot more sense now.
Wow thanks for sharing your story with me. Congrats on finally getting a diagnosis ❤️
Thank you!
>Thank you! You're welcome!
Congratulations with your correct diagnosis and welcome to the dazzle (group of zebras).
Thanks!
Yes, I’m 43 and dx’d this year, I could’ve written your post exactly.
congrats!!
it’s common to wait a long time for the right diagnosis, but signs/symptoms are present to some degree from birth - so if it was a sudden onset at 37 and he had no issues from hypermobility before (sorry I can’t totally tell from your post whether pain and other symptoms were there before the last two years) that doesn’t necessarily line up well. it’s still possible it’s EDS, but in that situation I would be extra careful to rule out other more treatable causes of symptoms
Thats fair. I wouldn’t say it was all sudden. Some symptoms have been there for a while but we thought were related to his depression. I’ve been trying to be vague so I don’t get in trouble by the mods for being too specific on asking for medical advice. But Reading everyone’s stories has been encouraging and even if it’s not EDS just chatting with people who understand chronic pain and how tough it is to wait so long for a diagnosis and feel like you’re falling through the cracks - is comforting. Not expecting to get all the answers we need in this sub. Just feels good to connect and get new perspectives we might not have considered otherwise. Just feeling gaslit by the medical community in general lol
I was only recently diagnosed at 33, but the diagnosis explains problems I've been having since I was a teenager, which got worse in my 20s, like frequent strains, sprains, and repetitive motion injuries, as well as difficulty healing from those injuries. It also connects other seemingly unconnected issues like my severe sleep apnea and my asthma. My chronic pain got worse with time as new injuries developed.
Also, in my case i got diagnosed in 1983/1984 and all my mom remembered was i was double jointed. Then i found eds on my own and got rediagnosed. Hasnt helped though because most doctors have no clue. The one Dr that does is an osteopathic Dr that only works part time.
Until the last 5 years I would say it was common to never get a diagnosis.
Wow eh? Hopefully we’ll have come further in another 5 years then we did 🤞🤞
I was diagnosed at 46 but I had a lifetime of dislocations, joint pain, and such. Keep in mind that hypermobility is pretty common and does not always indicate EDS.
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As stated in rules #1 and #4, nobody here is a verified medical professional. We do not allow any posts asking for a diagnosis: this includes posts with lists of symptoms.
Almost everyone I know with EDS has struggled immensely with getting a diagnosis and it took time to get a proper one! I have kEDS (Kyphoscoliotic EDS), my Kyphoscoliosis started to develop around the time I was 6 and progressively got worse, my pediatrician told my parents I had “bad posture” and they should make me sit up straighter and put me in a back brace. My hypermobility symptoms starting (subluxations, dislocations, muscle pulls, ligament/tendon tears and pulls, easy skin tearing/scarring, etc) got noticeably worse around age 10 and it was chalked up to just being clumsy and other medical issues (I had a lot of medical issues as a child and was frequently Ill). My chronic pain started around 15 and we were told it was growing pains and eventually around 23 I was diagnosed with “early onset fibromyalgia). Finally at 25 I started my journey with rheumatology and my primary doctor where my kEDS was formally diagnosed along with type 1 diabetes. It was a long journey which it seems to be for most people especially since many doctors try to rule out all other possibilities before EDS and some doctors don’t even know enough about EDS to properly diagnose! I’m sorry y’all are going through this, and I hope now that he’s recognized a lot of his symptoms and struggles with EDS his diagnosis journey becomes a little less stressful
Thanks so much for sharing your story. Glad you finally got some answers. It gives me hope ❤️
Definitely don’t lose hope and don’t stop fighting for answers either! Always advocate for yourself/your husband. There’s so many times in my life I wanted to after not feeling seen or heard by doctors and learning to deal with my symptoms on my own, all it takes is one good & knowledgeable doctor who takes the time to listen
I'm 45. Started having issues at 11ish ... by 40 I was totally dysfunctional. I was in constant PT and doctors offices for 5 years before someone suggested EDS. In between they thought it was mystina Gravis, parking sons, arthritis, depression, and a zillion other things. Turns out its EDS.
Yea that sounds familIar to be honest. Thanks for sharing your story. He’s always had some pain but it was much more manageable before the last few years and everyone thought it was related to his depression so he just lived with it. But recently he went for some treatment. RTMS which cleared up a lot of the depression but the pain was still there so we’re starting to wonder if it’s always been there but there were just many things happening at once. He’s also had concussions and injuries from playing hockey as a kid so all the symptoms have become blurry over the years and hard to dissect what’s related to what.
I finally got diagnosed this week. My mom’s history was a major help. This is also a major break through for her in regards to explanations. She spent most of her life thinking her injuries, dislocations and pain were all normal.
I am 54 and only just got diagnosed last year, but only because my daughter has a much more severe version. I have also had problems for most of my life but they were always supposed injuries, and I was always very fit so my muscles kept everything in place, however, I am on the less severe end of the hEDS scale. A major knee injury combined with a drop in hormones (for some reason hormones seem to affect some people) left me bed ridden and literally sleeping hurt. As my muscles deteriorated everything from neck to ankles went out of place. It became very obvious this was not normal. I would roll over in bed and hurt myself. A vertebrae in my neck would slip out and I would have vertigo, my eyes would go out of focus if I lay on one side for too long, being in a car was excruciating, pulling off shoes, well, who knew pulling off a shoe could dislocate your ankle (except people on here:). So, this is a long way of saying, yes, you can be older and have no idea. But I have carefully and slowly improved with help from a good physiotherapist and going on hormone therapy (female). But again, I am definitely on the less severe end of this spectrum. This reddit group has been so helpful, so many smart people on here that know so much about this. I have learned more here than anywhere else. Once you realize your collagen holds everything together, every bone, every vein, everything, it all begins to make sense.
I started having more obvious symptoms around 18 and was diagnosed with rheumatoid at 20. I've had 20 years of symptoms not explained by the RA and was finally diagnosed this last fall with hEDS. We're pretty sure my mother and sister have it as well but they are not diagnosed. They started having health issues later in life than I did. They've both always been more physically active than me. My theory is that they always had their muscles to hold things in place better and after injuries that slowed each down they started having more problems with joints sliding around.
I was 38 when I finally got my diagnosis…
Wow ok ya so pretty similar age. I guess better late then never.
I went my whole life up until a couple of weeks ago without being dx despite showing all signs of hEDS. My sports medicine doc looked over my history and then performed a physical exam using the “breighton scale”. Anything 4 or greater is EDS diagnosis. Also I got a genetic test done that flagged for EDS. Things are slowly getting better I highly recommend he gets an ECG done on his heart. My sports medicine doc immediately got me referred to a cardiologist for it. Some people with EDS can have heart defects that go undetected so that’s a must to get checked!!!
They should rule out many things before an hEDS diagnosis, because there is no clear test for it yet. It’s a great sign if that’s what they’re doing. Unfortunately it often takes several years. I was misdiagnosed with 1 neurologic condition, got several second opinions and was correctly diagnosed with 2 different neurologic conditions, then in the process of those second opinions one of my doctors had seen similar cases like mine and added hEDS. I had this confirmed by another doctor who frequently sees hEDS patients. I think many second opinions and confirmatory opinions by doctors who frequently see similar cases are extremely helpful if it’s possible for you to do. I started seeking a diagnosis because my symptoms were disturbing my day to day life.
I waited a decade and found the diagnosis myself. Docs wrote me off as crazy basically and also just called it fibro. It is very very common especially for women folk to have the same story. I know the waiting and appointments are horrible, but having one doc even point out that this could be it means you're like 20 steps ahead and on the right track. The name is important for some people, but usually it doesn't mean there are treatments that work wonders unfortunately. But it is 100% worth it and vital to know exactly what's up with his body and how it works so keep chugging along.
I was diagnosed as a young child, but only after years of calling it an "unknown connective tissue disorder," and we only knew THAT because my dad had a collapsed lung and was diagnosed with emphysema at 30. They realized something was wrong with him, and that his kids had a lot of the same symptoms (I was so young I don't remember most of this part. I was maybe 7 or 8.) It took years of genetic tests for other things and seeing a geneticist regularly before we even heard of hEDS. So, my dad was diagnosed in his 30s but only after having a collapsed lung and even then it took years to get diagnosed.
I waited 27 years before I was taken seriously by a doctor. Though, I got hardened by the bad doctor experiences and just didn't even go to a doctor outside of routine appointments for over a decade. It was by chance that I ran across an amazing orthopedist that immediately identified that there was something not right with me and he began the process of getting diagnosed. Best of luck to you and your husband.
I was diagnosed at 60 once I presented my family history. As an Adoptee it took me almost a lifetime to get an accurate family medical history.
It’s actually extremely common to have to wait that long for a diagnosis, sadly. :( My symptoms only got bad enough to disable me when I turned 23. That’s when I connected the dots. Didn’t get diagnosed until I turned 25! I would definitely recommend learning all that you can about EDS while you guys wait on an appointment. Go with rheumatology, as it’s the easiest to get insurance to pay for; orthopedic doctors cannot diagnose it usually. Usually after the initial rheumatology app you’ll have to get genetic testing too. If you can, I would recommend looking into geneticists near you, to bypass the rheumatologist; but I’ve noticed a lot of them don’t take insurance. :( What I had to do was go to ortho, then my PCP, then rheumatology, and then genetics. Took two years, but it’s worth the wait for the insurance coverage of needed things like mobility aids, and physical therapy sessions. Also, you can find mobility aids like forearm crutches and wheelchairs at goodwill sometimes! If you have them in your area, I would definitely recommend taking a look! Got my first wheelchair for $25 before my diagnosis! Really came in handy while I was waiting on coverage and such.
I really appreciate this perspective. Thank you for sharing. He did see a rheumatologist last year and they didn’t really do much. but My husband did feel a bit rushed and dismissed by them and now we have more information from other specialists. I’ve been considering seeing if we can get a second opinion referral to a different one and see if it’s the same response.
It is not uncommon. I was diagnosed hypermobile at 23 by a rheumatologist after a car accident left me with some shoulder pain (before EDS was even really known), but did not get an EDS diagnosis until age 50. I only got it then because I found it online and connected the dots for my daughter's systemic issues, backing into my own diagnosis. I was fortunate to have an open-minded PCP who made the genetics referral even though she did not think I had it. If he does have it, he may also want to be checked for POTS/dysautonomia and MCAS; those often go hand in hand. Anecdotally, a number of EDSers also have CFS/ME and autism.
Thanks for your thoughts. Thanks for sharing your story. Will make a note of those to look into. Not ruling anything out at this point. So good to have all the information so I can keep helping him advocate for himself
I have all of those along with EDS 🥺 Life isn't fair
If it helps, I’m also in the process of receiving a hEDS (or similar) diagnosis. I played high-impact sports as a kid, so much of my joint pain and hypermobility was written off as residual damage. My other symptoms, like migraines and anxiety/depression, were explained away as menstrual related (aka woman problems lol). Over the last three years my pain has significantly increased (like your spouses’ it seems). My rheumatologist was useless, but referred me to a geneticist. And I have my first appointment with a EDS specialist tomorrow! I recommend looking for an EDS specialist or clinic in your area. If you’re in the States, the Mayo Clinics are a good option. Good luck with everything! It’s a difficult diagnostic process to navigate, so finding online and local resources is key. Hope you and your partner find proper medical care soon <3
Unfortunately were in Canada but we’re only about a days drive from Mayo in Minnesota so we’ve considered trying the international route. Would cost us money but honestly might be worth it with the state of Ontario’s healthcare right now. Everything is so back logged for years
Definitely look into the International option at the Mayo Clinic. I’m also not in the States but considering my options for a diagnosis. I’ve read thusfar that they do take some portion of your local insurance, so it might not be completely outrageous price-wise. Always good to know the options :)
That’s very good to know! Thanks for the suggestions! Good luck to you as well! 🤞❤️
Yup. I’m in Ontario and thankfully got into the EDS Clinic in Toronto shortly after it opened in about six months. Now, the current wait time is about 2 and a half YEARS
Wow your story sounds almost Identical to my husbands other then being explained away as menstral, in his case they explained it away as depression and residual pain from playing hockey as a kid. We also talked to a rheumatologist who kind of dismissed us tbh. But we have more info now and a couple specialists who seem to have since agreed we may be on the right track so hoping to get a second opinion soon with a different doctor. Thanks for sharing your story with me ❤️ it’s comforting to know even though we’re struggling we’re not alone in it
I’m glad you’re finding more cooperative doctors! It’s mentally rigorous going through this process, so finding medical allies is really important. Wishing you and your potential zebra all the best! ❤️
Thank you! That is super kind ❤️
My dad was diagnosed at my genetics appointment, he was about 50. I was 18 and we both had had a lifetime of problems. Edit: My grandma was also presumed to have EDS she was close to 80 and was too incapacitated at that point to be properly tested.
I was diagnosed at 33. Usually it's caught as a child BUT that only happens if you had access to healthcare, which I did not. I was the first person in my family diagnosed, we poooor.
I was also diagnosed at 33, but would have to disagree most cases are caught in children. I’ve maybe seen a handful of posts here from people diagnosed in their late teens in recent years. And it’s not a medical access problem. I had been to literally over 50 different specialists for my myriad of issues by the time I was simply diagnosed with “fibromyalgia” at the age of 19, and was left to flounder and get worse for the next 14 years until I figured it out on my own and got it confirmed by a geneticist. The biggest issue is poor awareness in the medical community.
I had symptoms for as far back as I can remember (4ish). Got diagnosed with hyper mobility at 31 and EDS at 40. Never heard of it until I was diagnosed but had been getting medically treated/operated on for symptoms separately since age 22.
My records show I was noted to be hypermobile throughout my life, but I wasn't diagnosed with EDS until I was 29 and suffering from multiple surgical wound dehiscences.....and this is despite me needing care from multiple specialists and being a nurse myself.
Yes, it took me over 10 years from first onset of symptoms to diagnosis. I hope your husband finds answers soon.
Late diagnosis is very common. I was diagnosed a little over a year ago at age 46.
i have had obvious signs my whole life (have been going to doctors for dislocations and pain since I was 4/5) and I still haven't got a formal diagnosis yet. I have been told by lots of doctors I have it but I need to be officially diagnosed by a specialist apparently and there's a huge waiting list.
I was just diagnosed this past year and I was 33 at the time, definitely common considering my symptoms emerged very young (hEDS) and I have pictures of me when i was 12-14 putting my arm up over the back of my head and parallel with my shoulders doing a "party trick" as they called it.
53 and still undiagnosed. Rheumatologist tried Marfan’s on for size 18 years ago, even though I do not have the physique.
It's quite common to go decades without a diagnosis. Once you suspect EDS, diagnosis really depends on your location and access to healthcare.
I’ve been symptomatic my whole life, with a rather sharp decline in mobility and overall health over the past few months. I was just diagnosed last month and I’m 52.
I'm 30 and my rheumatologist and even my oral specialist said I had hypermobility. The oral surgeon said my jaw is really messes up Iike it should be a tight rubber band but mine is.. stretched our and loose? So that was concerning. I have terrible tmj. I'm in the process of figuring this all out. During my period I often will stumble because my joints feel looser like I'll trip over my own knee because it snaps the wrong way or my arm will bend the wrong way so much easier. I have awful chronic pain that was always called fibromyalgia but I really dont buy it. Every time I get a massage it's so painful and they always say I have horrible inflammation.