In kindergarten I kept experiencing hand and wrist fatigue as I was learning how to write. I mitigated this by switching hands every so often. EDS caused me to be ambidextrous to adapt to the fatigue and pain. Blackouts when standing started at age nine for me, and kept progressing as I got older, turning out to be POTS. I also had bad muscle cramps that were called growing pains, and some weird sprains. I also yawned as a kid, and it locked my jaw open and it took nearly a minute to get it unstuck.
That’s cool that you learned how to use both of your hands! That all sounds pretty typical of EDS- this stuff is all so obvious when you know what you’re looking for!
I also switch which FINGERS hold the pencil or brace the pen/pencil differently from the pain. It is extremely painful to write now. I just hold the pen straight up and get through it.
I believe it’s hands and feet- the raynauds. My color is blue mainly my feet. I can relate to everything you mentioned, as a child, all these symptoms- the extreme temperature issues; stretch marks everywhere (the knees always weirder me out!), but yeah, I wish it hadn’t taken most of my life to get dx. But, it was such a relief to get validated finally after yrs of drs brushing me off or misdiagnosis… great video as always! ❤️🦓
Thanks, Kat! I just double checked and yes, you’re right- fingers and toes! I’m sorry it took so long, but I’m glad you got your diagnosis in the end 💗
What was your first step? I'm a nurse. My family has had a myriad of symptoms with joints just popping out, muscle wasting from fatigue, early severe arthritis, bladder bowel issues. My son was born blue from being cold and he has had constipation since birth and he's extremely flexible complains of pain from walking alot (like my mom who had 2 hip replacements in her 50s and has knee problems too). Im worried if I cant figure it out and im a nurse, how can they?
Fascinating, especially the stretchy skin and blue hands. There's really so much diversity in the world, even with various symptoms. Thanks for sharing!
Hey! Just thought I’d mention that taking a long time to warm up from the cold as well as your hypersensitivity to the cold are also features of Raynauds, as well as your blue nails 😅. Love your videos. Thanks for sharing your journey with us. I’m still in the diagnostic part of mine
Oh I didn’t know that, thank you! These overlapping symptoms & conditions can be tricky to figure out sometimes haha 😂 Good luck! I hope you get some answers and access to better treatment soon (if your symptoms are not being treated already) 💗
As a child, I people often commented (and took the mickey out of) my ability to be really flexible and get into tight spaces. Not necessarily EDS in an way, but what they didn't see was the constant pain from migraines, gym activities and also my GI issues (again, not necessarily EDS). I don't think it would have been diagnosed back then(40+ years ago). Now, most of them are signs of age.
A lot of my viewers were diagnosed with EDS a bit later in life, so it’s definitely still possible to be diagnosed now if you suspect that you’d have it & if you’d like to pursue a diagnosis! A lot of rheumatologists aren’t educated enough on it to diagnose it, but you may get lucky and get someone who is- and it could make everything you’ve been through make more sense! I’d suggest having a read through the 2017 hEDS criteria and having a think about it after that :)
Hey Jamie, I'm in same boat but only because my 9 year old is suffering symptoms I just ignored. I thought I was just extra. I puked alot, peed myself alot, fell alot, had pain, couldn't run with other kids, my flat feet always hurt, my heart raced, id have cold sweats in school, my hands would hurt in ac. I hate too much motion (swings, rocking, strobe lights, cars) I couldn't stand being in sun unless near water because my skin burned/itched, dizziness and just kept to myself. inches, was also hospitalized for over 3 weeks with unexplained jaundice and vomiting as a kid. So I literally just thought I was a pain in the butt.
I have a video about living with an undiagnosed illness that you might find helpful! Let me know if you’d like me to link it :) I hope you get some answers soon!
My legs will completely dislocate and have to be put back into place by someone else by just crossing my ankles. I dont even have to do a full leg crossing. They will also dislocate if im driving in the passenger seat. Just feom the motion. Its terrible.
What do you mean by your legs, do you mean hips, knees or ankles? I know you can get AFOs (ankle foot orthotics) prescribed which are brilliant & also some great knee braces (either online or prescribed), if either of those joints are part of the issue. The hip tends to be harder to keep in place, but there are some braces for that too online & that can be prescribed. Your doctor should be able to help with a referral for AFOs if it’s your ankles, or a referral to get assessed for hip or knee braces if it’s those joints. Hope this helps 😊
i’m actually bawling right now. if any doctor had ever considered eds i could have saved myself so much phys and mental torture. f this “health””care” system it’s literally the biggest fraud of all time
Thank-you for making this video. I don’t have EDS but I have Mito and PoTS and CVS and I have similar symptoms . I have raynauds, dental issues, vomiting episodes and clicking joints. They’ve ruled out EDS (I was assessed by a Rheumatologist). I find it interesting how the symptoms are similar. Possibly to do with the fact I have PoTS and CVS too. I could be slightly hyper-mobile too but I didn’t score enough points to have EDS. I also have seizures so that fits more with mito. I still find it interesting though how symptoms can overlap. I have some friends who have EDS as well and they are wonderful people. Thank-you again for making this video.
Do you mind me asking how they diagnosed mito? I have POTS & CVS too, and am also not very hypermobile, I was the lowest Beighton score possible to be diagnosed with EDS, and I also have severe fatigue (stuck in bed most days), which isn’t typical of EDS for it to be as bad as mine is, but I’m currently diagnosed with ME for that
I had to have my hip operation three years ago it was popping for like three years then I got an mri and my labrum was torn. It still pops and I’ve had foot surgery and my thumb is double jointed and I just found out I have moderate sleep apnea lol anything else. I also have pots syndrome as well the cardiologist diagnosed it not many doctors in Australia know what it is. Like GPs don’t know much about it.
Thanks for sharing! POTS is very under-diagnosed here too as most doctors either don’t know about it or don’t think to check for it. I had to take the POTS info to my doctors myself after 3 years of severe symptoms when I finally figured out what was going on, & then they finally arranged the proper testing for me
I remember having crazy growthpains in my legs and hearing I was too young to have growth pains. And I remember my tummy problems started in the summer when I was 10 or maybe 11. When I grew up all kids had clogs? The wooden shoe with leather covering the shoe. I remember constantly kicking the back of my heels with them and also spraining my ankles. I fell over a lot, I always had bandaids on my knees, hand ans chin. I always had bruises (and I still do, I bruise like a peach). The scary thing is that I see the exact same symptoms in my two kids. Much love to you ❤️
I always see the growing pains you mentioned as a bit of a red flag, so I’d recommend getting your kids to see a doctor for that if you can (& you certainly can tell them what you think is causing it, as well as hearing their thoughts & having them run the usual tests & checks, etc). I wouldn’t worry too much about the other things just yet (as what child isn’t covered in cuts & bruises & constantly falling over haha), but I would definitely get those growing pains checked out for your kids if possible 💗
My poor little 9 year old falls alot (I did too) I actually learned to walk super fast so I dont trip over my own feet. He gets all twisted. His hips rotate 180 degrees so im sure he walks like a car lot flag I had to have people massage my feet/ankles when going to sleep they hurt so bad and now he needs me to massage his legs
My 9 year old wears a coat in 70 degree weather. I took him to the ER because he turned blue and they told me he was cold so keep him next to a heat source.
I often do too! Having lots of layers of clothes helps! If he’ll put up with it, he can discreetly wear thermal leggings (long johns? I forgot what they’re called for boys, sorry), but leggings under jeans & then lots of layers on top half Heat packs & stuff if he gets cold inside help, but blankets & stuff are better to avoid getting burns accidentally, dressing gown/robes/whatever it’s called where you are, they’re good for indoors
My hands and feet can go blue when it's cold and I have a lot of stretch marks (even in places people don't typically get them). I have very stretchy skin on some parts of my body. I read recently on Reddit that it's supposed to be common for those with EDS/hypermobilty not to crawl as babies; according to my mum I just shuffled around on my bum until I could walk instead.
Are you diagnosed or saying you think you might have it? If so, if you also have a a lot of pain &/or are quite unwell, then I would say it’s worth discussing with your doctor, as the stretchy skin would be a bit of a red flag in combination with chronic pain or chronic illness symptoms 💕
I’m so sorry, I get those morning symptoms too- beta blockers help the dizziness a lot, idk if that’s something you could ask your doctor about? Just be careful if you have low BP, as you’d only want a low dose of your bp is already low
What i don't understand is what brings on the attacks? Some mornings I have not much at all. Others are horrendous. I had a tele call with a dr where I was puking every 5 min (like being car sick) and I told her I didn't understand what was wrong but I think it had to do with my heavy period. Im a nurse and they know I won't call or come unless something is very wrong.
Lol I have such bad stretch marks when my doctor saw them she tested me for some rare infectious diseases like toxoplasmosis bc she couldn’t believe it was all stretch marks 😂 (and this was a diagnostic specialist)
These can ALL be signs of EDS, but only 3 are on the hEDS criteria, can you guess what they are? Watch the video to find out!
In kindergarten I kept experiencing hand and wrist fatigue as I was learning how to write. I mitigated this by switching hands every so often. EDS caused me to be ambidextrous to adapt to the fatigue and pain.
Blackouts when standing started at age nine for me, and kept progressing as I got older, turning out to be POTS. I also had bad muscle cramps that were called growing pains, and some weird sprains. I also yawned as a kid, and it locked my jaw open and it took nearly a minute to get it unstuck.
That’s cool that you learned how to use both of your hands! That all sounds pretty typical of EDS- this stuff is all so obvious when you know what you’re looking for!
My 9 year old complains of legs hurting which is chalked up to growing pains
I also switch which FINGERS hold the pencil or brace the pen/pencil differently from the pain. It is extremely painful to write now. I just hold the pen straight up and get through it.
I believe it’s hands and feet- the raynauds. My color is blue mainly my feet. I can relate to everything you mentioned, as a child, all these symptoms- the extreme temperature issues; stretch marks everywhere (the knees always weirder me out!), but yeah, I wish it hadn’t taken most of my life to get dx. But, it was such a relief to get validated finally after yrs of drs brushing me off or misdiagnosis… great video as always! ❤️🦓
Thanks, Kat! I just double checked and yes, you’re right- fingers and toes! I’m sorry it took so long, but I’m glad you got your diagnosis in the end 💗
What was your first step? I'm a nurse. My family has had a myriad of symptoms with joints just popping out, muscle wasting from fatigue, early severe arthritis, bladder bowel issues. My son was born blue from being cold and he has had constipation since birth and he's extremely flexible complains of pain from walking alot (like my mom who had 2 hip replacements in her 50s and has knee problems too). Im worried if I cant figure it out and im a nurse, how can they?
@@womanatwellworshiptheFatherhad to go to London to get mine confirmed after a long long journey still need genetic testing
Fascinating, especially the stretchy skin and blue hands. There's really so much diversity in the world, even with various symptoms. Thanks for sharing!
Thank you! The stretchy skin is pretty specific to EDS, whereas quite a lot of people actually experience blue or white hands from the cold!
Hey! Just thought I’d mention that taking a long time to warm up from the cold as well as your hypersensitivity to the cold are also features of Raynauds, as well as your blue nails 😅. Love your videos. Thanks for sharing your journey with us. I’m still in the diagnostic part of mine
Oh I didn’t know that, thank you! These overlapping symptoms & conditions can be tricky to figure out sometimes haha 😂 Good luck! I hope you get some answers and access to better treatment soon (if your symptoms are not being treated already) 💗
As a child, I people often commented (and took the mickey out of) my ability to be really flexible and get into tight spaces. Not necessarily EDS in an way, but what they didn't see was the constant pain from migraines, gym activities and also my GI issues (again, not necessarily EDS). I don't think it would have been diagnosed back then(40+ years ago). Now, most of them are signs of age.
A lot of my viewers were diagnosed with EDS a bit later in life, so it’s definitely still possible to be diagnosed now if you suspect that you’d have it & if you’d like to pursue a diagnosis! A lot of rheumatologists aren’t educated enough on it to diagnose it, but you may get lucky and get someone who is- and it could make everything you’ve been through make more sense! I’d suggest having a read through the 2017 hEDS criteria and having a think about it after that :)
Hey Jamie, I'm in same boat but only because my 9 year old is suffering symptoms I just ignored. I thought I was just extra. I puked alot, peed myself alot, fell alot, had pain, couldn't run with other kids, my flat feet always hurt, my heart raced, id have cold sweats in school, my hands would hurt in ac. I hate too much motion (swings, rocking, strobe lights, cars) I couldn't stand being in sun unless near water because my skin burned/itched, dizziness and just kept to myself. inches, was also hospitalized for over 3 weeks with unexplained jaundice and vomiting as a kid. So I literally just thought I was a pain in the butt.
Saw your video after a long time, i am undiagnosed for almost two years when I watch your videos it gives me alot of strength
I have a video about living with an undiagnosed illness that you might find helpful! Let me know if you’d like me to link it :) I hope you get some answers soon!
Georgina's Journey yeah sure
My legs will completely dislocate and have to be put back into place by someone else by just crossing my ankles. I dont even have to do a full leg crossing. They will also dislocate if im driving in the passenger seat. Just feom the motion. Its terrible.
What do you mean by your legs, do you mean hips, knees or ankles? I know you can get AFOs (ankle foot orthotics) prescribed which are brilliant & also some great knee braces (either online or prescribed), if either of those joints are part of the issue. The hip tends to be harder to keep in place, but there are some braces for that too online & that can be prescribed. Your doctor should be able to help with a referral for AFOs if it’s your ankles, or a referral to get assessed for hip or knee braces if it’s those joints. Hope this helps 😊
Thank you for the tips and knowledge
You’re welcome! Thanks for watching!
Very informative and well spoken 👏 I had never heard of this before until now.
Thank you!
i’m actually bawling right now. if any doctor had ever considered eds i could have saved myself so much phys and mental torture. f this “health””care” system it’s literally the biggest fraud of all time
Really interesting! Thanks for this video.
Thanks, Kayla! 😊
I like vibe of where you have recorded your last two videos. It is very relaxing. Like having a one to one conversation. 🙂
Thank you! 😊
You're so beautiful!
Thank you so much!
Thank-you for making this video. I don’t have EDS but I have Mito and PoTS and CVS and I have similar symptoms . I have raynauds, dental issues, vomiting episodes and clicking joints.
They’ve ruled out EDS (I was assessed by a Rheumatologist).
I find it interesting how the symptoms are similar. Possibly to do with the fact I have PoTS and CVS too. I could be slightly hyper-mobile too but I didn’t score enough points to have EDS. I also have seizures so that fits more with mito. I still find it interesting though how symptoms can overlap. I have some friends who have EDS as well and they are wonderful people.
Thank-you again for making this video.
Do you mind me asking how they diagnosed mito? I have POTS & CVS too, and am also not very hypermobile, I was the lowest Beighton score possible to be diagnosed with EDS, and I also have severe fatigue (stuck in bed most days), which isn’t typical of EDS for it to be as bad as mine is, but I’m currently diagnosed with ME for that
What are the syndromes mito and CVS since they are similar to EDS. Im taking my 9 year old to orthopedist on referral.
I had to have my hip operation three years ago it was popping for like three years then I got an mri and my labrum was torn. It still pops and I’ve had foot surgery and my thumb is double jointed and I just found out I have moderate sleep apnea lol anything else. I also have pots syndrome as well the cardiologist diagnosed it not many doctors in Australia know what it is. Like GPs don’t know much about it.
Thanks for sharing!
POTS is very under-diagnosed here too as most doctors either don’t know about it or don’t think to check for it. I had to take the POTS info to my doctors myself after 3 years of severe symptoms when I finally figured out what was going on, & then they finally arranged the proper testing for me
I remember having crazy growthpains in my legs and hearing I was too young to have growth pains. And I remember my tummy problems started in the summer when I was 10 or maybe 11. When I grew up all kids had clogs? The wooden shoe with leather covering the shoe. I remember constantly kicking the back of my heels with them and also spraining my ankles. I fell over a lot, I always had bandaids on my knees, hand ans chin. I always had bruises (and I still do, I bruise like a peach).
The scary thing is that I see the exact same symptoms in my two kids.
Much love to you ❤️
I always see the growing pains you mentioned as a bit of a red flag, so I’d recommend getting your kids to see a doctor for that if you can (& you certainly can tell them what you think is causing it, as well as hearing their thoughts & having them run the usual tests & checks, etc). I wouldn’t worry too much about the other things just yet (as what child isn’t covered in cuts & bruises & constantly falling over haha), but I would definitely get those growing pains checked out for your kids if possible 💗
My poor little 9 year old falls alot (I did too) I actually learned to walk super fast so I dont trip over my own feet. He gets all twisted. His hips rotate 180 degrees so im sure he walks like a car lot flag
I had to have people massage my feet/ankles when going to sleep they hurt so bad and now he needs me to massage his legs
My 9 year old wears a coat in 70 degree weather. I took him to the ER because he turned blue and they told me he was cold so keep him next to a heat source.
I often do too! Having lots of layers of clothes helps! If he’ll put up with it, he can discreetly wear thermal leggings (long johns? I forgot what they’re called for boys, sorry), but leggings under jeans & then lots of layers on top half
Heat packs & stuff if he gets cold inside help, but blankets & stuff are better to avoid getting burns accidentally, dressing gown/robes/whatever it’s called where you are, they’re good for indoors
Oh girl! Yes in winter we just put leggings on him under jeans. He wants a coat and a heating blanket in 60 degrees. He's the reason I'm investigating
My hands and feet can go blue when it's cold and I have a lot of stretch marks (even in places people don't typically get them). I have very stretchy skin on some parts of my body. I read recently on Reddit that it's supposed to be common for those with EDS/hypermobilty not to crawl as babies; according to my mum I just shuffled around on my bum until I could walk instead.
Are you diagnosed or saying you think you might have it? If so, if you also have a a lot of pain &/or are quite unwell, then I would say it’s worth discussing with your doctor, as the stretchy skin would be a bit of a red flag in combination with chronic pain or chronic illness symptoms 💕
@@GeorginasJourney I'm not diagnosed but I have POTS and chronic pain.
I wake up dizzy and i get sick and vomit. If i eat before bed i wake up nauseous.
I’m so sorry, I get those morning symptoms too- beta blockers help the dizziness a lot, idk if that’s something you could ask your doctor about? Just be careful if you have low BP, as you’d only want a low dose of your bp is already low
What i don't understand is what brings on the attacks? Some mornings I have not much at all. Others are horrendous. I had a tele call with a dr where I was puking every 5 min (like being car sick) and I told her I didn't understand what was wrong but I think it had to do with my heavy period. Im a nurse and they know I won't call or come unless something is very wrong.
I think your big eyes are a feature. Ive always had bigger brown eyes. Im terribly near sighted though.
I’m very near sighted too!
Lol I have such bad stretch marks when my doctor saw them she tested me for some rare infectious diseases like toxoplasmosis bc she couldn’t believe it was all stretch marks 😂 (and this was a diagnostic specialist)
I’m glad she’s thorough at least haha, a lot of doctors won’t test for rare things as they think it’s so unlikely that there’s no point!
I have terrible WIDE stretch marks. I can put my thumb in them and they are like paper inside too