It’s so frustrating trying to get a diagnosis. The doctors act like it’s a prize you have to put effort in to get. And people say why do you want a diagnosis if there’s no treatment. Thanks for the video!
Well, sometimes people speak just because they feel they have to. A diagnosis is essential, especially while getting treatments to manage your symptoms - you need to know what's wrong in order to help figure out the right combination of medication and alternative treatment for you. And yep, I agree on the effort we have to put in for the 'prize'!
I'm 69 and was just dx'd with EDS Hypermobility (EDS III). Starting at age 52, I've all major joint replaced plus 3 level lumbar fusion and one tmj . I just found out I now have cervical problems. I also have RLS, RA and Sjogren's and was dx'd with fibro but never really believed that. I was having knee pain and back pain since I was 16 and costochondritis since 40 . I think it was EDS - III all the time. I had an uncle that had all the same problems and was just told he had a lot of OA. I wish he was still alive so we could compare. His son (my cousin ) has just had one ankle replacement. My rheumatologist told me they have been dx'ing so many cases of EDS III in older people that Ortho's won't treat them anymore. They will only treat younger people with the hope that they can hold off some of the problems. So much for the idea that it's a rare disease.
Hi : ) thank you for your video! I was diagnosed a month ago with Ehlers Danlos Hypermobility and am happy to know there are so many others, especially on UA-cam. I learned if you have h-EDS you should probably have an echocardiogram to rule out issues and if/when you are pregnant you require an extra visit each trimester. As for treating pain, I love my heating pad for my back and ice pack for my head and I try to stay very well hydrated. The most significant lesson I have learned on this here year journey has been to self advocate. Don’t listen to doctors when you are the expert on your body. If your provider doesn’t listen, get a new one! I did and it saved me. And…. remember to be kind to yourself 💕
Hi Gabrielle, Thank you for watching and thank you for sharing your tips - I know many people like us need these reminders - especially ones where we shouldn't stick to doctors who don't listen!
Thank you for your informative video. I hope you are feeling as well as possible. I am older and am finally getting diagnosed. An orthopedic doctor and the head of a PT hospital clinic both recently told me I likely have EDS. This explains so much: the bouts of pain, the "growing pains," why my jaw slipped out of place and crunched down on the disc causing a year of pain, why it took me years to recover from abdominal and back surgery, flare ups of pain, and the reason my joints are unstable and I fall. (One of the worst interactions with a doctor was a few months after a pregnancy when I told him I had a lot of pain every day. Know what he said to me? He said,'You have MOMMY-ITIS.")
Oh my gosh the growing pains!! I almost broke my hip as a little kid, and now it turns out the excruciating "growing pains" I felt my entire childhood weren't normal! Who would've guessed?? Sure my pain was probably exacerbated when I grew but... having to smack my leg repeatedly into the wall to try to get a small enough relief of pain that I could sleep growing up was definitely my hEDS, not just "growing pains" -_- Also growing up with bruises for a tan because my skin was just so fragile, I was clumpsy due to frequent ankle sprains and other issues, plus the slow healing time. Currently I'm thankfully working with a fantastic physical therapist with a great knowledge of EDS and hypermobility syndromes, and has been working with me to keep the muscles that aren't supposed to be so tight loosened, and stabilizing and strengthening others. Plus it's been a year since my 2 subsequent patellar dislocations, and my bursa and fat pad are still inflamed with tons of prolonged knee pain
Hi Taryn, Yes that growing pains stuff is something I try telling everyone - please do not say your child has just growing pains!! I'm so glad you've found a fantastic physiotherapist for EDS - that's so important. A good physio can really help improve quality of life. Have you tried taping for your knee issues?
@@FootprintsNoBoundariesByShruti I have and it's really helped, but unfortunately the last time I tried taping 3 weeks ago I had a horrible reaction to the adhesive (it literally gouged out chunks of my skin because well...fragility is fun). The marks are finally almost finished with the scabbing to scarring process so I don't think I'll be able to tape again 😩
O' damn I know what you mean about the skin fragility and tape issues. I tried applying calamine lotion a couple of hours before my taping sessions and using hypoallergenic tape.
@@FootprintsNoBoundariesByShruti I'll have to try that (once my skin heals), thanks! Is there a specific brand you've found that works for your sensitive skin?
I Will get tested for HEDS This year, I do have a LOT of EDS Traits if not most and both mena some of my friends think I have it so I Will get tested to find out if that is what I have
Thanks for the video! My EDS story is similar to yours. Resources on the Ehlers Danlos Society website have been super helpful to me - especially the "2017 EDS Classification for Non-experts" articles that neatly organize all of the effects EDS can have into categories. I was almost properly diagnosed at age 21, but through confusion the specialist screened me for Marfan syndrome instead. My diagnosis was delayed until age 37 - after years of inappropriate treatment, wasted time/money/resources, and permanent damage to my body due to not having my EDS diagnosed and treated. Lack of knowledge about EDS is definitely a problem with healthcare providers, but even worse is misinformation about EDS. Since there are at least 13 different types of EDS, there's a lot of confusion. Many of the extreme and rarer cases of EDS get published in medical journals, and doctors read those and then assume that all EDS patients have to present the exact same way. The signs and symptoms of EDS can actually vary from patient to patient, and affect anywhere in the body since collagen is found everywhere in the body.
It's so annoying how these delays happen! Avoidable delays too! But yes it's so true how there's a lot of rigidity in doctors when diagnosing rarely diagnose conditions like EDS - It can cause so much unnecessary suffering (the mental and physical). Thank you so much for watching and sharing your experience - I know it'll help many out there.
Hi Shruti, l hope you are feeling well. Wouldn’t it be terrific if other people who believe they may have this condition known as Ehlers-Danlos could describe their personal thoughts here on this topic, and also relay what their own medical practitioners processes & pathways have been implemented with regard to treating the condition. You have dealt and researched the condition as much as you physically can but you also keep an open mind to further knowledge that may be just around the corner! I also believe there are more people in the world who are trying to determine what’s happening to their own bodies, and they could very well be currently experiencing the pains & healing issues associated with Ehlers-Danlos. Seeing the condition is largely under diagnosed by the medical profession thus far, there must be more bewildered people out there also experiencing this and not knowing what it is. It would be most welcoming if anyone recognises the symptoms similarly in themselves or someone they know, and to describe their experiences/outcomes here in the comments. This would be of great help to those who are having to live with these symptoms on a daily basis and possibly change their quality of life in a more positive way.
Hi Sofia, I completely agree with you. I really hope people who share, keep sharing and those who haven't yet shared open up to do so. It really is a great way to help each other and not feel so alone. Thank you for taking the time to watch and to leave a comment. It's very encouraging.
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It’s so frustrating trying to get a diagnosis. The doctors act like it’s a prize you have to put effort in to get. And people say why do you want a diagnosis if there’s no treatment. Thanks for the video!
Well, sometimes people speak just because they feel they have to. A diagnosis is essential, especially while getting treatments to manage your symptoms - you need to know what's wrong in order to help figure out the right combination of medication and alternative treatment for you. And yep, I agree on the effort we have to put in for the 'prize'!
Feels like this with ADHD, they think that you just want chemicals lmao.
I'm 69 and was just dx'd with EDS Hypermobility (EDS III). Starting at age 52, I've all major joint replaced plus 3 level lumbar fusion and one tmj . I just found out I now have cervical problems. I also have RLS, RA and Sjogren's and was dx'd with fibro but never really believed that. I was having knee pain and back pain since I was 16 and costochondritis since 40 . I think it was EDS - III all the time. I had an uncle that had all the same problems and was just told he had a lot of OA. I wish he was still alive so we could compare. His son (my cousin ) has just had one ankle replacement.
My rheumatologist told me they have been dx'ing so many cases of EDS III in older people that Ortho's won't treat them anymore. They will only treat younger people with the hope that they can hold off some of the problems. So much for the idea that it's a rare disease.
Hi : ) thank you for your video! I was diagnosed a month ago with Ehlers Danlos Hypermobility and am happy to know there are so many others, especially on UA-cam. I learned if you have h-EDS you should probably have an echocardiogram to rule out issues and if/when you are pregnant you require an extra visit each trimester. As for treating pain, I love my heating pad for my back and ice pack for my head and I try to stay very well hydrated. The most significant lesson I have learned on this here year journey has been to self advocate. Don’t listen to doctors when you are the expert on your body. If your provider doesn’t listen, get a new one! I did and it saved me. And…. remember to be kind to yourself 💕
Hi Gabrielle, Thank you for watching and thank you for sharing your tips - I know many people like us need these reminders - especially ones where we shouldn't stick to doctors who don't listen!
Pain with hEDS can be minimal bit it can also be very severe... Heating pads/ice packs do very little for my pain. :(
Thank you so much for sharing!
Thank you for your informative video. I hope you are feeling as well as possible. I am older and am finally getting diagnosed. An orthopedic doctor and the head of a PT hospital clinic both recently told me I likely have EDS. This explains so much: the bouts of pain, the "growing pains," why my jaw slipped out of place and crunched down on the disc causing a year of pain, why it took me years to recover from abdominal and back surgery, flare ups of pain, and the reason my joints are unstable and I fall. (One of the worst interactions with a doctor was a few months after a pregnancy when I told him I had a lot of pain every day. Know what he said to me? He said,'You have MOMMY-ITIS.")
Oh my gosh the growing pains!! I almost broke my hip as a little kid, and now it turns out the excruciating "growing pains" I felt my entire childhood weren't normal! Who would've guessed?? Sure my pain was probably exacerbated when I grew but... having to smack my leg repeatedly into the wall to try to get a small enough relief of pain that I could sleep growing up was definitely my hEDS, not just "growing pains" -_-
Also growing up with bruises for a tan because my skin was just so fragile, I was clumpsy due to frequent ankle sprains and other issues, plus the slow healing time.
Currently I'm thankfully working with a fantastic physical therapist with a great knowledge of EDS and hypermobility syndromes, and has been working with me to keep the muscles that aren't supposed to be so tight loosened, and stabilizing and strengthening others. Plus it's been a year since my 2 subsequent patellar dislocations, and my bursa and fat pad are still inflamed with tons of prolonged knee pain
Hi Taryn,
Yes that growing pains stuff is something I try telling everyone - please do not say your child has just growing pains!!
I'm so glad you've found a fantastic physiotherapist for EDS - that's so important. A good physio can really help improve quality of life.
Have you tried taping for your knee issues?
@@FootprintsNoBoundariesByShruti I have and it's really helped, but unfortunately the last time I tried taping 3 weeks ago I had a horrible reaction to the adhesive (it literally gouged out chunks of my skin because well...fragility is fun). The marks are finally almost finished with the scabbing to scarring process so I don't think I'll be able to tape again 😩
O' damn I know what you mean about the skin fragility and tape issues. I tried applying calamine lotion a couple of hours before my taping sessions and using hypoallergenic tape.
@@FootprintsNoBoundariesByShruti I'll have to try that (once my skin heals), thanks! Is there a specific brand you've found that works for your sensitive skin?
I usually get Move Kinetic Tape - but strangely their website isn't working, so I'll get in touch with them and ask and get back to you.
I Will get tested for HEDS This year, I do have a LOT of EDS Traits if not most and both mena some of my friends think I have it so I Will get tested to find out if that is what I have
Thanks for the video! My EDS story is similar to yours. Resources on the Ehlers Danlos Society website have been super helpful to me - especially the "2017 EDS Classification for Non-experts" articles that neatly organize all of the effects EDS can have into categories.
I was almost properly diagnosed at age 21, but through confusion the specialist screened me for Marfan syndrome instead. My diagnosis was delayed until age 37 - after years of inappropriate treatment, wasted time/money/resources, and permanent damage to my body due to not having my EDS diagnosed and treated. Lack of knowledge about EDS is definitely a problem with healthcare providers, but even worse is misinformation about EDS. Since there are at least 13 different types of EDS, there's a lot of confusion. Many of the extreme and rarer cases of EDS get published in medical journals, and doctors read those and then assume that all EDS patients have to present the exact same way. The signs and symptoms of EDS can actually vary from patient to patient, and affect anywhere in the body since collagen is found everywhere in the body.
It's so annoying how these delays happen! Avoidable delays too!
But yes it's so true how there's a lot of rigidity in doctors when diagnosing rarely diagnose conditions like EDS - It can cause so much unnecessary suffering (the mental and physical).
Thank you so much for watching and sharing your experience - I know it'll help many out there.
Hi Shruti, l hope you are feeling well. Wouldn’t it be terrific if other people who believe they may have this condition known as Ehlers-Danlos could describe their personal thoughts here on this topic, and also relay what their own medical practitioners processes & pathways have been implemented with regard to treating the condition.
You have dealt and researched the condition as much as you physically can but you also keep an open mind to further knowledge that may be just around the corner!
I also believe there are more people in the world who are trying to determine what’s happening to their own bodies, and they could very well be currently experiencing the pains & healing issues associated with Ehlers-Danlos.
Seeing the condition is largely under diagnosed by the medical profession thus far, there must be more bewildered people out there also experiencing this and not knowing what it is. It would be most welcoming if anyone recognises the symptoms similarly in themselves or someone they know, and to describe their experiences/outcomes here in the comments. This would be of great help to those who are having to live with these symptoms on a daily basis and possibly change their quality of life in a more positive way.
Hi Sofia, I completely agree with you. I really hope people who share, keep sharing and those who haven't yet shared open up to do so. It really is a great way to help each other and not feel so alone.
Thank you for taking the time to watch and to leave a comment. It's very encouraging.
Thank you.
I'm still in the medical gaslighting phase. My doctors continue to tell me that it's no big deal