Thank you for sharing your story. About the migraine, mine was triggered by the cold weather, I used to get them every time I cycled to university. The cold air would rush into my lungs too quickly, and my muscles would contract due to the cold, triggering my headache. It was so severe that I had to sleep it off every day before I realised what was happening.
@ehlersdanlosandi Жыл бұрын
You're welcome! Migraines are the worst, I'd take any severe body pain over a migraine any day!
@shannongreenwell1278 Жыл бұрын
Happy Valentines 💌 Day to you my fellow Zebra! I was notorious for falling, and I still am. I would have “ Charlie Horses” as a child in my legs, I can see up close but not far away, I wear glasses. I was always uncoordinated… I am still like that… as my dad says. And I had other symptoms that now was a sign that I had Classical EDS!
@ehlersdanlosandi Жыл бұрын
And to you as well! At least we have a good excuse for our clumbsiness!
@shannongreenwell1278 Жыл бұрын
@@ehlersdanlosandi true that! What’s these” healthy people “‘s excuse?
@michelebenedetti26747 ай бұрын
I’m so happy to hear that. My son who is now going to be 29 was diagnosed over a year ago at John’s Hopkins after two life threatening emergencies. He seems to be stable thank God. He struggles with pain in his neck back and joints and has muscle weakness. He also had motility issues and troubles gaining weight. He is about to start bpc 157 and feels very hopeful about it
@ehlersdanlosandi7 ай бұрын
Glad to hear he's stable. I hope the treatment helps.
@HeatherKannal Жыл бұрын
Your story is so similar to mine. I have a working Dx of hEDS, as of now but hope to get the official Dx in 2024.
@bethanyspence4156 Жыл бұрын
Thank you for sharing your story! I find it helpful to hear others’ experiences. I’m not-so-patiently waiting for my appointment to be evaluated for eds. Your story of lots of random, seemingly disconnected issues is very similar to mine! My primary doctor suspects eds, which is why I’m getting evaluated, and I think her “aha” moment was at my last yearly checkup, when we were once again discussing my POTS and all my other odd issues, and I mentioned I was hyper-mobile. She asked if I could touch my thumb to my forearm, which I can, and it was like a lightbulb moment. I’m super thankful to have a knowledgeable pcp!
@ehlersdanlosandi Жыл бұрын
Your pcp sounds amazing! I hope your evaluation appointment goes well. I still think it's strange that hEDS is supposed to be rare but the evaluation wait lists are so long.
@bethanyspence4156 Жыл бұрын
Yes! I’ve wondered the same thing 🤷♀️
@justforsomething Жыл бұрын
My this is me moment was reading an infographic on Instagram during EDS awareness month, my GP agreed and I then went on the process and got the official diagnosed last year at 36.
@ehlersdanlosandi Жыл бұрын
Thank goodness for the internet!
@jwilleseries7764 Жыл бұрын
This is extremely relatable, this video describes most of my experiences and I will be a physiotherapist in a week
@ehlersdanlosandi Жыл бұрын
Congratulations! Your hypermobile patients will be so lucky to have someone who personally understands their struggles!
@DanieGirl-tt9xc Жыл бұрын
Wow! This is nearly identical to my story😳 officially diagnosed two weeks ago
@michelebenedetti26747 ай бұрын
Thank you for sharing your story. How are you
@ehlersdanlosandi7 ай бұрын
You're welcome! I'm doing well, how about yourself?
@theogallagher17068 ай бұрын
Thank you for putting out content it is super helpful
@ehlersdanlosandi8 ай бұрын
You're very welcome!
@Truerealism747 Жыл бұрын
I had haitus hernia fonr what stopped the acid in mt lungs
@KristinAnna7 ай бұрын
So helpful thank you
@ehlersdanlosandi7 ай бұрын
You're very welcome!
@kendawg_mcawesome4 ай бұрын
Crazy. I can't believe how many dots are connecting here for me...
@Truerealism747 Жыл бұрын
The ladt neurologist sys my upper bidy pain shoulders armpits is migraine without headche?
@ehlersdanlosandi Жыл бұрын
I've heard of that! Never experienced it myself, though.
@Truerealism747 Жыл бұрын
@@ehlersdanlosandi maybe he is right then sure feels like migraine though I haven't had conventional migraine fir 8 years he says they transform over the years or can do if it is I need to break the cycle but with having Àspergers ime very sensitive to medication and a sensitive soul to lolit does say on the migraine trust to but I haven't met anyone else
@Truerealism747 Жыл бұрын
@@ehlersdanlosandi sorry about replys phone messes with spellings for some reason when press send
@Truerealism747 Жыл бұрын
Mcas is nightmare but i have no allergy symptoms now with minerals but can mcas cause muscle pain you have had so many mt symptoms sr schubiner says its rhe subconscious mins with asperger's week college n
@ehlersdanlosandi Жыл бұрын
I'm not sure if mcas can cause muscle pain, but if it does, I bet it would be hard to distinguish between EDS pain!
@Truerealism747 Жыл бұрын
@@ehlersdanlosandi very hard pain is isn't it have your symptoms changed over the years
@ehlersdanlosandi Жыл бұрын
@tomsale5142 my pain definitely changes, it's worse now than it was in my 20's, but I have a lot of good days too. It's kind of all over the place and hard to predict.
@Truerealism747 Жыл бұрын
@@ehlersdanlosandi thank you for your replys it's a lonely.illness with few around to speak to about this
@Truerealism747 Жыл бұрын
Just lost my mum who obvously had heds and then got severe ms my grandfather had it he called it slack joints he saud his mu. And grandmother had it though i now no we all have Asperger's they gome together niw my sins diagnosed hope he doesnt get this pain cfs
@ehlersdanlosandi Жыл бұрын
I'm so sorry to hear about your mum! Hopefully an early diagnosis will help your son.
@Truerealism747 Жыл бұрын
@@ehlersdanlosandithankyou have you found any resolution to the pain
@ehlersdanlosandi Жыл бұрын
@tomsale5142 not anything that completely stops pain or keeps it from coming back, but I have my go to pain relief tactics. I like heat therapy for most pain, either a hot bath or heat packs, massage is nice, occasionally I'll use pain relief creams. Bracing joints helps me too. I don't do much for medication, just ibuprofen for migraines and headaches mostly.
@Truerealism747 Жыл бұрын
@@ehlersdanlosandi upper body for myself constant if you twist your skin thumb first finger does it sound like velcro.like to no if it's a eds symptom ndo you also have asperger's.ime told it's 60 percent comorbid
@ehlersdanlosandi Жыл бұрын
@@Truerealism747 I'm not sure if I'm doing the thumb/finger thing right, but it doesn't sound like velcro. I do not have Asbergers or anything similar, but I have heard of the connection.
@oliverbird6914 Жыл бұрын
I think crispr is the way forward for us
@ehlersdanlosandi Жыл бұрын
That would sure be interesting!
@oliverbird6914 Жыл бұрын
@@ehlersdanlosandi have you seen those student scientists who said they found a heds gene. It was from a few years ago now. Not sure what happened to it
@sahilbansal3963 ай бұрын
Hlo mam hypermobility patient is suffer to osteoarthritis in later life All patient in osteoarthritis Yes or no
@ehlersdanlosandi3 ай бұрын
@@sahilbansal396 Almost all people with hEDS will develop osteoarthritis, and usually earlier than people without hEDS.
@sahilbansal3963 ай бұрын
@@ehlersdanlosandi hlo mam HSD develop in osteoarthritis in later life No gi issue no constipation Only leg thigh muscle pain regular Please mam suggest me
@ehlersdanlosandi3 ай бұрын
@sahilbansal396 I wish I could help more, but this would be better handled by a doctor. For pain, I like to use heat packs or a hot bath, and eating a low carb diet has also reduced my pain. It couldn't hurt to try those if you're interested.
@Mommyandbell10 ай бұрын
Thanks for sharing my autobiography lol
@ehlersdanlosandi10 ай бұрын
Haha, you're welcome! It's funny how so many of us have similar stories!
@mahmodromieh6802 Жыл бұрын
very poor god mercy her
@noone-4029 Жыл бұрын
Are you a doctor?
@ehlersdanlosandi Жыл бұрын
No, I'm actually a radiologic technologist (I'm trained to do xrays, CT scans, mammograms, ultrasounds, bone density scans, and nuclear medicine). The information I give out on this channel is a mix of personal experience as a patient with hEDS, being a healthcare professional myself, and also info pulled from sources like the Ehlers Danlos Society.
@noone-4029 Жыл бұрын
@@ehlersdanlosandi Thank your for your efforts in this channel, you're helping me a lot Wish you the best ♥️
@ehlersdanlosandi Жыл бұрын
@@noone-4029 you're so welcome, thank you!
@oliverbird6914 Жыл бұрын
I tell you, in areas like this, most patients are way ahead of the vast majority doctors in terms of awareness and treating themselves in this field. If you're looking for help from a doctor you're basically screwed in general
@ehlersdanlosandi Жыл бұрын
@oliverbird6914 I agree, many EDS patients are their own experts!