I’ve suffered with chronic pain almost my entire life, starting at around 8 years old. I’ve been on a life long journey to find out what’s going on with my health, and in June of 2020 I got my answer. I was diagnosed with Ehlers Danlos Syndrome (EDS), a rare genetic disorder that affects my connective tissues due to a mutation in my collagen gene. Join me on my medical journey to find my diagnoses and ways to cope with a degenerative, incurable disorder.
I'm really starting to think this is my issue. I have every hypermobile thing except my right pinky.. which may have broken/dislocated in childhood and not cared for. I have often said i get 'corpse fingers' when i get too cold. Like all the blood drains out and my fingers are pale and skeletal. What sort of doctor do I need to see? I dont even have a PCP right now...
One EDS disanosis is all proof needed in my book :) You got worse symptoms and have been diagnosed twice as many time as me so you got EDS For sure. Since you got a wheelchair because of youre EDS Diagnosis then do you think I can get a wheelchair as well? My walking tolerance is decreasing so I will need a wheelchair in a few years since my legs aren't stable enough to carry my body that well anymore
@@jwilleseries7764 absolutely!! If having a wheelchair can help you gain more independence and save your body some energy then you should definitely get one
@@shelbystewart5495 You're right about that :D A friend of mine who is in a wheelchair for a different reason also suggested it to me due to my problems with walking & standing for longer time periods. I never know when my legs are going to get injured from walking & today I could not walk in my apartment for a short time so I had to crawl. When my legs flare up & I cant stand well I often lean of stuff & that hurt my wrists even more than they usually do so using crutches would not be a good idea & I do think getting a wheelchair in a few years is the best solution even though I won'tuse it full time. Do you need to use yours most of the time or part time?
@@shelbystewart5495 it was my first virtual appointment today. I'm in Ontario, Canada and there's only the one clinic here. Like you, and many others, I had to investigate and put things together myself - mine after a major medical in October. I just received the report online of the doctors notes - many pieces included were not the responses I gave and there were a couple questions he didn't even ask me. I'm supposed to go (mine is a 4 hour drive as well) to the clinic in person but I'm feeling incredibly disheartened. I KNOW my body. And I stumbled on EDS accidently, but it made my entire life health history make sense. What were some of the ways you coped with this at the beginning? I really hope you're doing well these days 💜 My friend found you for me on what to expect my first in person visit and I'm so happy I've found you 🦓
OMG, all my life I have thought something is really wrong and I have tried for decodes to get answers but they just kinda look at me like I am crazy - I was in the ER a week ago because I could move my back at all without white light pain... They finally did a CT scan and said that I have degenerative discs - basically arthritis. I'll take it as a starting point in the right direction I guess.
Hmm .. some of these things I would have gotten more points for in my younger days, but now the arthritis got in the way of some joint mobility. Which I think is my body's way of saying "Hey! Stop doing that stretchy thing!"
I realize this was 4 years ago, but it is worth a try. You mentioned the red dot that appeared. Curious to know the explanation. Similar symptoms that I noticed, and didn’t know the reason.
My sister has cEDS & dr were stumped by petechiae on her lower legs. She had to research for yrs and self diagnose not only herself but her daughter and then figure out which specialist to see bc GP was at loss as were other specialists over the yrs for various symptoms. Was the same when her estrogen dropped. Cardiologist couldn’t figure out her stuff. GI couldn’t figure out gut stuff. Neurologist couldn’t figure out headaches. Allergist couldn’t figure out food sensitivity. On & on. She figured it out finally. Went to a gynecologist that supports estrogen replacement. By then she suffered 10 yrs with issues! Luckily she taught me & I was able to begin birth control as I still have regular periods but had tons of symptoms of low estrogen. Be strong! Be your own advocate! She also figured out I had SLE when GP sd it was all separate issues.
@@shelbystewart5495 omg that is terrible! I just learned a few days ago that you can order the testing on your own through Genome Medical and Invitae lab. That’s what I’m going to do I think. I got an hEDS diagnosis and then found out I have a massive family history of this w some pretty severe symptoms so I want to know that it’s the right diagnosis to help the, and any other relatives and their kids etc to know what might be going on.
Very good idea. I have a back purse but with all my medical supplies it’s entirely too heavy. Before my illness got very bad I was a life long tiny purse person. I don’t know why I didn’t have the idea for a separate back pack sooner!!! I think we get so overwhelmed with chronic illness sometimes it’s hard to think of the little things. Also nice to see u looking so happy and excited. We all need more happy and excited days.
I’ve just recently gotten my diagnosis of HEDS and waiting on my DNA swab to test for several things that go along with Eds. I’m concerned about the problems I’m experiencing with my veins. My geneticist said I was the first in her experience with longer arm and hand length versus height. I didn’t see you mention that. I don’t believe I have as stretchy skin as you but a little stretchy and loose jointed everywhere in my body.
@@shelbystewart5495 every family member I’ve shared this with keeps saying there’s nothing that can be done about it so they are not even interested in talking to their Drs about it.
I’m not sure what you mean by there are meds and procedures you can’t have, but that’s exactly a great reason why it’s important to be diagnosed. It affects a huge part of my life and medical care, so having a diagnosis is very important.
Wait....shinbones aren't supposed to be bumpy? I'm watching everything I can because doctors where I am apparently aren't very familiar with it my doctor says she's sure I have but there's no testing for it.
You are adorable! Would love to see & hear more content of chatting about your EDS difficulties, your victories & general living. My rhumatologest recently asked me if anyone has ever mentioned EDS to me. No one ever has & I'm 64 years young! Glad you're docs are seeing what's going on with you & actively investigating. Hope you're doing OK. You brightened my chronic illness day. You are precious❤💜💙🩵🩷🦓
Thank you 🙏 l hope you can get diagnosed soon so you can be treated properly! not go for years and years without getting a diagnosis then the time docs are diagnosing you think that all your symptoms are related to getting old ! ❤🙏🇺🇸🙏💕
Ugh, yes. It’s extremely frustrating as a service dog handler. I’ve had multiple experiences where people bring their fake service dogs into stores and they try to attack my actual working service dog.
This is a great informative video that calmed me. Just wanted to say thank you. I thought EDS'ers looked special but you look completely normal so just that alone educated me and all the signs too, extremely good video.
Nope, we EDSers look like everyone else in the world, because EDS is an invisible illness. You can’t see it from the naked eye, however we can definitely feel it on our daily basis.
Thats really frustrating 😢 Im working on getting an official diagnosis to figure out wth is wrong with me, naturopath says Heds, physio says he can't say 100% but definitely HSD at the least and every GP thinks i have anxiety 😒 having issues like this sucks because of the lack of information ❤
I have all the same things. And got tested. Nothiing turned up on DNA. So I got the hypermobility EDS diagnose four years ago. I am now worse then four years back. So It is very serious. Stay strong :)
You can do it, Julie! These illnesess give us immense strength and appreciation for life. I know many days that's hard to believe, it's a warriors journey! Believe in yourself, everyday. Much love to you and all the best your way. <3
Omg 🤯I thought everyone was able to do all of those things! Until now 🥲 The only thing I’m not able to do is touching the floor without bending my knees… but I do have back issues
I just started watching this but can you explain what the red dot is and how it pertains to EDS? My daughter and I are both diagnosed and have weird red dots on one or a few places on our bodies. We have no clue what they are. Also, sorry if you explain in the video and this question is asked impulsively. Gotta love my ADHD that tells me I must ask now!! 😂
