You are the best patient advocate! You have a wealth of knowledge! Thank you for educating us & sharing what you know & your experiences, all the while, you have such a calm & uplifting personality. You may not be a doctor, but I swear, you know so much more about this all, than any ER doctor I've gone to yet. You are brilliant with this stuff. I look forward to every video & hope you realize how much of an impact you have on many of us, struggling to figure this stuff out. Thank you!
Thank you so much for this video. Your lived experience, is worth a ton more than a lot of dismissive medical professionals who have little or no training or experience of EDS. There seem to be so many in the medical profession who seem to go by 'if I've not come across it before, it doesn't exist'. The nuber of times I have been invalidated, dismissed or ignored when trying to explain things to medics to the point I gave up on them entirely. The exhaustion and pain and the impact that has on mental health are massive, yet still keep getting told, that can't happen, etc. AHHHHH 🤬🤬🤬🤬🤬 Lived experience is WAY more valuable.
Thank you so much! And I’m so sorry you’ve had some bad experiences- I have too & most people with chronic illnesses I know have as well, I wish doctors were kinder towards patients with conditions that they don’t know or don’t understand, or if not kind, then at the very least, I wish they weren’t so dismissive!
This was very informative. Thanks. I only got to know about EDS and it's associated conditions because I came across a lady named Amy Lee Fisher. Her name came up when I was researching seizures for my own condition (epilepsy). Since then, I've got to know others with EDS, including yourself. Keep up the good work 👍 😊
Thank you! Amy was my friend, I think of her all the time ❤️ I hope your epilepsy is as well managed as it can be and med side effects aren’t too awful, it’s been nice getting to know you too, through these comments 😊
Thank you so much for explaining each condition to the best of your ability. It is very helpful. I also REALLY appreciate the fact that you left in the clips of repositioning and taking breaks! Not many people show that part of their lives, and so most “normal” people don’t realize that we have to do that in order to keep comfortable and help blood flow correctly. I am personally on my journey to find my diagnosis’s. It’s suspected that I have EDS and POTS but I don’t have the “official diagnosis’s yet. So I’m grateful for you sharing your story and helping to spread awareness! Thank you for all you do! -Gracie
I’m so sorry I didn’t reply sooner, I kept meaning to & then not having the energy, but this comment really meant so much to me, thank you so much Gracie! Hope you’re doing okay x
I was diagnosed with Hypermoblie EDS At the beginning of this year & I have had a really difficult time eating for a really long time so I asked if I could be tested for gasteoparesis but was told that people with EDS Usually does not get Gasteopraesis even though I know that many do. I can bearly eat & have to force myself to eat basically anything since I usually have no appetite & when I do, I get naceous & fell full after a few bites & have to force myself to eat the rest & it takes a long time. Eating is causing me to get really tierd & almost never full. As a result I get hungry quicker & have to force myself to eat something small again while having even less appetite so much of my day is spent eating & resting from eating.
Your voice is very calming. I'm in the process of trying to get a diagnosis. I've had Ulcerative Colitis for 16 years and I've had really bad brain fog and eye fatigue for a long time now. No body pain or muscle weakness. I'm still going through all the tests 🙈
Thank you! I hope you can get some answers soon, have you had a read through if the 2017 hEDS criteria? That can give a pretty good indication about whether it could be EDS. M.E could be another one, that can cause severe brain fog & eye fatigue without body pain in some cases
@@GeorginasJourney They are currently doing tests for autoimmune that would attack my eyes. I doubt it's ME at this point because I've done 2+ mile hikes everyday and iv started working out again and I haven't had any PEMS. I did look into HEDS criteria and the only hyper mobility I have is my thumb. My pinky, elbow, knees and touching the floor are all failures 🙈 and I don't have any from criteria 2. I was diagnosed with POTS though from a TTT, but it's very mild. My brain fog has gotten better substantialy, but my eye fatigue it awful. Do you have eye fatigue? Only time it isn't there is when I'm outside, walking.
Hi, yeah, I get eye fatigue too but for me, it’s believed to be from M.E. Glad you’ve got a pots diagnosis at least, that solves part of the puzzle :) I hope you can find something that helps you soon!
@@GeorginasJourney I've been wearing blue light glasses for most of these 2 months. It has helped A LOT. I am actually seeing some minor improvement ☺️ I also switched anti depression medication and that has also helped. Is there anything that has helped you? Keep rolling with the content 🙂
@@redhairedviking2657 that’s great news! I have my phone on night mode permanently (only take it off to edit my RU-vid thumbnails) & I use hydrating eye drops 😊
Great video! My more disabiliting symptoms are definitely the chronic pain, POTS and my GI symptoms (which funnily enough I have never been diagnosed a specific thing but have been on domperidone since I was 14 about it and it work really well, I call it my magic med)
