6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome [CC]
ฝัง
- เผยแพร่เมื่อ 24 พ.ค. 2024
- Having Ehlers-Danlos syndrome means having a complicated condition. I didn't realise how complex it could all get and the extent it can affect an EDSer's existence. If you've been newly diagnosed with it then these learnings of mine may help - well, I hope they do!
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Time Stamps:
01:10 - 1st Thing
02:19 - 2nd Thing
03:55 - 3rd Thing
04:39 - 4th Thing
06:00 - 5th Thing
07:16 - 6th Thing
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Original article to this video:
6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome:
allthingsendometriosis.com/th...
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Follow me on Social Media (and check out my website & podcast too!):
Website: allthingsendometriosis.com/
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Podcast: open.spotify.com/show/2l9oX7A...
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References Mentioned in this video:
National Cancer Institute:
training.seer.cancer.gov/anat....
Jeannie Di Bon:
jeanniedibon.com/
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Website Reference:
My Journey: Being Diagnosed with Ehlers-Danlos Syndrome:
Blog Post: allthingsendometriosis.com/jo...
Video: • How I was Diagnosed wi...
My Experience: Treatments to Manage Ehlers-Danlos Syndrome
Blog Post: allthingsendometriosis.com/tr...
Video: Part 1 - • Treatments to Manage M...
Part 2 - • Physiotherapy & Exerci...
My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome
Blog Post: allthingsendometriosis.com/my...
Video: • Connecting Endometrios...
Are Ehlers-Danlos Syndrome & Fibromyalgia Connected?
Blog Post: allthingsendometriosis.com/eh...
My Experience: The Relation Between Endometriosis / EDS and Chronic Fatigue
Blog Post: allthingsendometriosis.com/en...
Dysautonomia: How POTS Changed My Life
Blog Post: allthingsendometriosis.com/dy...
Video: • How I Manage My POTS, ...
Everything Endometriosis:
allthingsendometriosis.com/ab...
CSF Leak:
Blog Post - Part 1: allthingsendometriosis.com/st...
Part 2: allthingsendometriosis.com/in...
Video - Part 1: • Status Migrainosus, Th...
Part 2: • From Migraine, to CSF ...
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
#Hypermobility #EhlersDanlosSyndrome #EDS #hypermobile #healthandfitness #healthblogger #dysautonomia #POTS #growingpains #whatisehlersdanlossyndrome #connectivetissue
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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.
Everything you’re saying here deeply resonates with me. I was told all my life that I was “faking” my pain - I even ended up (TWICE!) on a 48 hour psychiatric hold at 15 and again at 36 after I was accused of DELIBERATELY dislocating my joints. 🤦🏻♀️😠😤🤬
Your story is tragically an all too common one for we “zebras”. I have had hEDS since birth. I was FINALLY diagnosed at age 42 during a visit to a pain clinic I had, at that point, been waiting for 3 years to get into.
I was already feeling incredibly defeated, yet again, when the physician who did my initial assessment told me she was confident I had fibromyalgia. I KNEW that wasn’t the issue - nothing (except the brain fog) fit. Yes I had spent most of my life at that time with constant extreme widespread pain, but it wasn’t like the type of pain described in all of the cases & research on Fibro I’d read while trying to find answers.
I still am sure that the ONLY reason I was finally diagnosed was because as the doctor was helping me to sit up & move off the exam table, she accidentally caused an anterior dislocation of my left shoulder when I fainted from to changing positions too quickly (POTS).
Much to her horror, as soon as I’d regained consciousness (pretty much the second I was prone), I did what I’d always done - reduced the dislocation on my own. Apparently that was a bad thing as far as she was concerned, lol, but honestly…to me, it was just another day, another dislocation. 🤷🏻♀️
Quite frankly, I’d gotten so used to doing it myself that I didn’t even think about it - it hurt & I needed the pain to stop - plus I had developed a pretty large distrust of doctors after being chucked into 2 different psych wards by a couple other doctors, (not to mention all the times I’d been told I was “just another drug addict seeking narcotic pain relief”. 🙄😑
Although she’d been in practice as a GP for over 51 years at that point and had never personally seen or diagnosed a patient with EDS, she immediately knew what was going on. All that remained was to discover exactly what form of it I had.
Thanks to my EDS, I also have POTS, MCAS & other issues due to Dysautonomia. I also suffered through multiple pregnancy losses between 16-24 weeks gestation due to having an incompetent cervix.
Because there was no actual test at that time for diagnosis of hEDS, I ended up having to suffer through needless multiple medical tests to rule anything else out, but eventually we reached the point where it could be nothing BUT hEDS
I was adopted at just a couple months of age and knew nothing about my family medical history - after receiving my diagnosis, I decided to attempt to find my birth parents. (At that time I already had survived two out of what would eventually be four different types of cancer, so I was fairly confident that cancer was one of the familial health issues).
I did eventually meet my birth mother, but unfortunately my birth father had passed away at a fairly young age (42). Although there had been a few signs of what could easily considered to be EDS in my bio mother’s family, I also later found out that my bio father had passed away due to a prolapsed mitral valve & had suffered his entire life from chronic pain & “frequent dislocations”. (Ding-ding-ding!!! We have an answer!).
My biggest regret will forever be that I unknowingly passed this along to my children. It breaks my heart to have to watch my eldest battle with EDS - the ONLY upside in all of it is that my own diagnosis has prevented them from going through all the absolute medical hell that I did.
Personally, I think EDS is actually far less rare than most medical professionals seem to want to believe.
I’m glad to have found your channel, but I’m so sorry you’ve had to go through all that you have.
Good thing we “bendies” are so tough! ❤️☮️
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.
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.")
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 TH-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. :(
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.
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
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.