♡ EDS Awareness 2018: My Journey to a Diagnosis! | Amy Lee Fisher ♡

[@nurseerin1]

I’m a nurse and hadn’t heard of EDS until I found your channel! Since then I’ve had 2 patients with EDS and I can empathise with them on a different level and improve their care because of what you’ve shown the world! So thank you!

[@amyleefisher52]

Erin Kelleher thank you for watching my channel and taking the time to educate yourself more! You sound amaizng and I’m sure your patients are lucky to have you as there nurse! 🙏🏼💖

[@Mary-op8hi]

Gosh you have no idea how much of an effect this comment just had on me. I went undiagnosed for so many years (12ish) that I not only didn't take precautions to protect my joints which thus ended up causing a lot of irreversible damage to my body (such as the permanent severe nerve pain/damage that I am now stuck with which was caused by some slipped disks and a vertebrae crushing important nerves and compressing my spinal cord for so long that when I finally had access to the spinal surgery I so desperately needed, I was told that it was too late for it to be able to cure my neuropathic pain), but I also ended up with (what I currently believe to be) irreversible psychological damage as a result of being told for over a decade by almost every single authority figure in my life (doctors, parents, teachers, managers etc) as well as the majority of my "friends" that the pain was all in my head, that I was doing it all for attention, that I was too self-absorbed, that I was doing it in a bid to get drugs, that I was manipulative, etc, and if I ever let on that their comments were getting to me, that only added fuel to the fire as they would then come out and say things like, "me saying this wouldn't really upset you if there wasn''t some truth to it", or "if you were truly being honest, my opinions wouldn't matter to you"". So for the most part I just sat and took it and over the years each little comment would chip away even further at my self-esteem, my confidence, my happiness, my ability to trust both others and myself, and my overall emotional/psychological well-being; I mean, you can only be told so many times that you're a trash persyn who is so deceitful and manipulative that you don't deserve any care or respect before you start internalizing it and believing it. All this to say, that having people attack the validity of your lived experience is extremely detrimental psychologically, emotionally, and when authority figures, such as medical professionals get involved, physically. And it kind of makes the whole thing even more awful when you realize that there's such a simple solution to the problem; that solution being proper education. And this right here is why I loved coming across your comment. You reminded me of just how powerful education/learning can be and that furthermore, there are actually compassionate and caring people who will take time out of their day to do this learning. This provides me with a little bit of hope that perhaps we are moving forward to a society with improved patient-care, and care for one another in general. THANK YOU

[@nurseerin1]

Amy Lee Fisher Thanks so much lovely!! Keep spreading the word! You’re doing an amazing job!

[@nurseerin1]

chronicallyvegann Firstly, I’m so sorry to hear about your experience... I can definitely see how that journey can have lasting impact on you and I hope things are looking up for you! I agree wholeheartedly that education is the key! It can be the difference to life and death but also the difference to a good or bad experience which people hold with them for the rest of their lives. I want all of my patients to have good experiences and if I can support my patients better by furthering my education then that is what I’ll do, and I intend to share my education with others too, spread the word, spread the love 💕

[@amandatorian9173]

I feel like I could have written these comments. Things like this happened to me from such a young age. I had chronic sprained ankles when I was very, very young and the doctor told my parents it was all in my head and I was using it for attention. They called him a crackpot and always believed me. But, I've rarely had doctors show any sort of compassion or understanding. From the ankles, it went to the knees, from the knees to the wrists and it's just snowballed into so many joints now. I, too, have permanent nerve damage in my neck & wrist from being untreated/undiagnosed for so long. My Mom and I finally got our diagnosis 8 years ago. I was 31 and she was 53.

[@jroostah]

I am a huge medical nerd, and I love learning about different conditions. Thanks for being so open in talking about your diagnoses!

[@HelloItsYou]

@Maynard Hudecek Saw this comment somewhere else and this is what was said to it.. 100% a scam. Do not go to this website. You've probably seen a few of these youtube comment exclaiming, excitedly, "Hey guys, I don't know if anyone cares, but I hacked my girlfriend's insta account using instapwn:) Just google it and you can too!" and subsequent replies boasting about how it worked. It's all a scam. DO NOT search for these websites online. They can possibly install malware on your device without you knowing and may compromise your device(s), or fish for your data by asking you to "login to instagram" and it being a fake website set up to look exactly the same as regular instagram, stealing your information in the process. DO NOT go to this website.

[@littleratboi3644]

I have a friend who has EDS and I can never remember what it stands for so I made up something for what it’s stands for so I can remember and I call it Easily Dislocating Syndrome and it helps to explain it a bit better to others and she even said she likes my version better😊

[@alysonjade2461]

I honestly can’t imagine having to deal with everything you do. You are so incredibly strong!!! Thank you so much for sharing with us!!!

[@liamodonovan3437]

Eds isn't acknowledged much and it is only recognisrd in the last few years it's only since watching channels like yours I hear it most thank you love you Amy

[@amyleefisher52]

Liam O Donovan I agree! Thank you for watching 💖💖

[@avaarmour5405]

I’ve worn ankle braces and knee braces since I was 10 years old due to low muscle tone, tendinitis, and sensory processing disorder! Basically I don’t know where my body is going lol! I look up to you so much! Stay strong!

[@avahill3946]

I have been trying to get a diagnosis for 4 years, and everything has been a dead end despite chronic pain and dietary issues so it's been a bit frustrating, and I am always interested in hearing about other's illnesses and such in order to try and figure out what could be wrong for me, so I love your channel and it makes me feel less alone.

[@HelloItsYou]

I AM SO SAD, Amy is so beautiful and pure, im shocked im finding out shes died :'(

[@rebeccamunson9316]

Came here from 2019 EDS Q&A video. Who else?

[@chellym8]

Glad to not be alone anymore, was diagnosed as a baby and always thought I was the only one and it was hard 💜

[@monicaclarkschmidt6339]

You're adorable and such an inspiration. I don't have any "medical conditions" besides diabetes but I was recently in a horrible ATV accident which caused numerous broken bones. I can't move the same as I used to and I'm covered in scars. I was extremely depressed when I got out of the hospital and you and Mary from the Frey Life have been my inspiration. You both are so positive and just wonderful. Thank you

[@amyleefisher52]

Oh my gosh!! I’m so so sorry that happened to you! I can’t even begin to think the agony you must be in! But I’m glad that you have found comfort in connecting with other youtubers! And I’m also glad that I can help in some way even if it’s small 😅 Sending you all my love and positive vibes! I hope your okay beautiful 💖💖

[@gillianmiller8301]

Thank you for explaining your conditions so well. I now understand what you have to go through day to day. I now feel lucky to only suffer from Lupus, reynard‘s disease and fibromyalgia. Looking forward to your next vlog 💖

[@ansony90]

Thank you for sharing this information. I know that there’s so many health issues that aren’t well known and you bringing EDS awareness is just amazing. I love how positive and beautiful you are.

[@nattieb9117]

It sounds like your experience going through NHS diagnosis was a lot better than most I've seen. I was unlucky and it took 20 years to get a dagnosis. I am now at least getting help for the things that are directly EDS related (joint support, EDS specialist physio, Hydrotherapy and OTs) but have had no luck finding a sympathetic rhumatologist (other than going private to Dr Hakim in london..) or anyone to help with my comorbid conditions. Last time I had a gastroparesis flare, I couldn't eat for 8 weeks and my doctor told me that "its fine, you could stand to loose some weight anyway" I'm really glad you've had a better experience, and I love your zebra braces, mine are boring NHS beige!

[@BellaAtkins]

A slight correction: we have a normal amount of collagen, its structure is just faulty (i.e. too stretchy!) and thus don't provide the strength in ligaments and tendons to keep joints in place! The different types of EDS affect different types of collagen, which is why they present slightly differently in terms of symptoms!

[@brooklyndonatone7102]

Thanks for making this video! As someone with EDS, it's important to see how others with the mutation are living and thriving. And, for those without EDS, it's just as important to know how EDS affects people with the condition. That said, I do want to make it clear that EDS doesn't always "run in the family," despite the fact that parents with EDS stand a 50% chance to pass the mutation on to their offspring because that is absolutely not accurate. According to the National Organization of Rare Diseases or NORD, "In some individuals, the disorder (EDS) is due to a spontaneous (de novo) genetic mutation that occurs in the egg or sperm cell. In such situations, the disorder is not inherited from the parents." I find this important because if you or your GP believes EDS is solely passed on by a parent, you may not receive the necessary genetic testing. Furthermore, it's very common, at least here in the US, for EDS to be misdiagnosed in general. But, even if one of your parents has/had EDS and they themselves were not diagnosed properly, your GP will be working off of an incomplete family history which can lead to misdiagnosis. For example, my mom had a text book case of vascular EDS, but was not diagnosed and had me as a result. I wasn't diagnosed until a few years ago and am thankful that I wasn't planning on "starting a family" with my partner until my 30's. I know that I couldn't sleep at night if I had passed this mutation onto an innocent child. And, I'm honestly glad that my mom passed thinking that she didn't pass along the heart and vascular disease that baffled doctors her whole life.

[@nicolahocking5981]

This was a really good video. I think it would really help those who have had lots of the medical issues you have but have no diagnosis. They would know what they would need to do to be tested.xxx

[@loubear2769]

I have eds and I know its one of the most medically neglected conditions I have been told for 6 years it was in my head 6 years later I fall down a flight of stairs dislocate my wrist but it went back in next day got up and collapsed in the floor an now in a wheel chair and now every joint dislocates well almost every joint but I pull through and watching ur vids make me happy coz I can see the difference it make a lot of people know about it now And u are my favorite youtuber thx for making a difference

[@Little_Bird_Chihuahuas]

Would love to hear more about how you deal/manage your bladder issues....I have major issues in that area myself and recently I had to quit my job due to it.

[@sah05319]

It took 12 years from the onset of symtoms to a diagnosis. I don't have any known family history of it so doctors were refusing to even think of it being anything other than just flexibility.

[@Dulcimerist]

Your accent here in 2018 is mostly British, but 2019 and especially 2020 has a lot of Aussie breaking through. :)

[@lucieriley5560]

As someone with EDS I love this, bring to life what this is

[@greeneyes12346]

Thank you for this information I score a 7 on the scale. They will have to check my elbows. I use the same ankle braces and also occasionally use one that laces up to pull them even tighter.

[@raising.my.miraclesandrea5578]

From a nurses perspective you did a great job explaining eds. I am curious if it is your mom / dad or both who carry the gene are they affected by the illness or related illnesses or do they just carry the gene

[@Themccormickfamily]

Andrea Durie Great question, I have wondered who she got it from. Amy, I'm also curious if any of your siblings have eds.

[@allie4680]

I have Eds and it also depends on th type of Eds u have on if ur parents have it or are carriers! I have Classical Eds and as far as we know both my parents are just carriers

[@brooklyndonatone7102]

Actually, NEITHER parent needs to have EDS. Because EDS is a genetic mutation, people often have a misbelief that it directly hereitary from a parent, grandparent, etc. But, don't take it from me, take it from NORD: "In some individuals, the disorder is due to a spontaneous (de novo) genetic mutation that occurs in the egg or sperm cell. In such situations, the disorder is not inherited from the parents."

[@SarahSmiles4u]

Thank you so much for sharing how you were diagnosed. I am in the process of getting a name for my newest issues and your post has helped tremendously. Much luv 💕😀✌️

[@deborahleitch5839]

Ams congrats on am excellent vlog. Great explanation of Eds. Trust you are coping with going into the hospital ever6 day this week for scans. At least we are nearing the end of the end of the week. Sending lots of Positive Vibes from Eastern Victoria .

[@nicolesanders7543]

Your channel popped up in my recommendations and I’m glad I found it. I have Spondylolisthesis where one vertebrae slips forward over the one below it and I met other people who have this and some have EDS so basically they have a dislocation of their spine. I’m glad I know now what they’re going through

[@angiemcintyre2732]

I feel you struggles, i fractured my right hand and it is taking forever to heal, next step is making an appointment with rheumatologist to figure out why, i also have disc issues in my back and had back surgery, please keep sharing i love your videos!

[@carly9355]

Thank you for doing this video! I always learn a lot from you. You look very pretty today btw!!

[@rmjames83]

I didn’t think there was a genetic test for EDS type 3/hypermobile EDS-SO awesome if it’s available!!

[@felicityaeh]

rachael james there isn’t currently a test for HEDS/EDS3 but it’s important to be genetically tested to make sure you don’t have any of the other types!

[@jenniferelyse5134]

I'm trying not to give up. I have hypermobile joints (can do all in the B scale), cyclic vomiting, I keep developing allergies that are inconsistent, orthostatic intolerance bordering on POTS but an otherwise healthy heart), migraines, dural ecstasia, fatigue (was napping through lunch in high school), TMJ that lasts 6-12 weeks, I've had broken bones and joints I can pull almost out of socket, I have intense pain daily, but I've been to a geneticist and so far no diagnosis. So far everyone says they see what's happening but either can't prove it or don't think it's severe enough (plus I have no association with my family to do history). It's been 11 years since I could last work, but no one seems to want to put a name to this. Marfan was ruled out, but it's still possible I have the type of EDS that doesn't show up in genetic testing. It's been 7 years since starting this investigation, only just applied for disability but based on the forms I don't think I'll be accepted. I want to bring this video to my doctor Monday because I don't feel I'm being taken seriously because I'm not in hospital constantly. Seeing you reminds me that I'm not imagining this. Thank you for the work you put in, I know how absolutely impossible this can feel.

[@harleywithacane8674]

I don't know how your journey has progressed since you wrote this, but I just wanted to say that that sounds a lot like it could be EDS Type 3(hyper-mobility type). I'm also working towards an EDS diagnosis and I fulfill the diagnostic criteria(just look up h-EDS diagnostic criteria) and my comorbidities are much less severe(no vomiting, migraines, etc). The inconsistent allergies are probably mast cell activation syndrome(MCAS), the cyclic vomiting may be gastroparesis, and POTS is also a common comorbidity(that I also have!). Good luck!

[@madiemaelou]

I just got a preliminary diagnosis of EDS which has been a long time coming. (The doctor was losing her mind because she was amazed I hadnt been diagnosed already.) But I’m waiting for more specialists ans testing to give me a definitive type. And while I was watching this I was like I need that hip brace. Like dear god I would love to wake up and have my hips in place.

[@dreamtimefun5088]

This is insane, didn’t even know this was a thing but it makes so much sense! My nana, mum and myself all had/have knee problems. Our knees easily dislocate with any activity, mine started when I was 6-7 years old. When I do anything (including walking) my knees can dislocate. They have dislocated so much in the past 19-20 years that it now no longer hurts as much (however, it depends on HOW I dislocated it..if that makes sense) I constantly have joint pain in almost every single joint in my body but my doctor when I was 13 just put it down to the fact that I was overweight. I’m not self diagnosing but it’s somewhat refreshing to know that I’m not the only one who has a similar issue. I’m now rambling so I’m gonna stop aha 👋🏻

[@jetleclaire5868]

It's nice to see another spoonie 💜

[@ruby_roulette_Wheeling_Autism]

I have hypermobility syndrome and my gastro and other doctors think it's EDS. I hope to find a specialist who will see me to diagnose EDS amazing video x

[@tia9101]

I love you so muchh 😍 your such an inspiration. Just a question how’d u get diagnosed with pots? I think I may have it

[@amyleefisher52]

Tia by a cardiologist then I saw a POTS specialist who confirmed it. But I had a Tilt table test xx

[@tia9101]

Amy Lee Fisher does any systems show up in an ultrasound? Because I have had a heart ultrasound before. If it does then idk what’s wrong with me

[@phili7347]

Also a 9/9 got diagnosed at like 4/6yo my mom as well at that point, she did a skin biopsy (I was too young). Could never (still can’t) sit on the ground for longer then a minute and bad knees hands elbows, weak bowl movement

[@unstrung65]

Your attitude is absolutely amazing and inspiring . Your videos , I'm sure give hope to so many people . You affirm my faith in humanity . Best of luck !!

[@sah05319]

Also- theres no known gene mutation for hypermobility type EDS, for anyone who fhinks they have that type.

[@Dractonis]

Hi Amy, I'm the girl that did the radio 4 appeal a few weeks ago. Thank you for this. x

[@amyleefisher52]

Dractonis and thank you for your appeal! I enjoyed listening to it 🙏🏼💓

[@eduardopadilla5505]

Women are very strong!! Great for you how you manage everything you have.

[@TwylightRosee]

I love ur videos so educational who else agrees?

[@sophiaharrison3297]

Allergies is actually inappropriate mast cell function too! (Mast cell degranulation by cross-linking, not supposed to normally occur) but they normally play a role in inflammation from tissue injury / infection. So allergy and mast cell degranulation disorder are kind of similar! Obviously the mechanism and result is different but just so y'all know your mast cells aren't out to get you, they do actually have good purposes too!!! 😂

[@AMBELLINA_X]

Zebra wrist splints!!! Thank you for this video!

[@AMBELLINA_X]

Also I think the first instagram link is wrong...? It's supposed to go to chronically.ams right?

[@amyleefisher52]

Niamh Gabrielle yeah it’s meant to! I think I fixed the link 😅

[@Laundrey1]

Hip brace! I think I would benefit from that! My hips subluxation alllll the time and I can just walk and feel like they are going to pop out. One is worse than the other so I never put my weight on that side. I've not been diagnosed with EDS as of yet, but I have a lot of the comorbities. I was diagnosed 15 years ago with gastroparesis and 1 year ago with IBS, though it was suspected years ago. I have a score of 7 on the beighton scale. I also can do that thing you did with your finger. If I push it that way too much then it will be stuck dislocated. I have massive joint pain. I wake every day in pain and a hot shower helps ease it but then makes me feel faint so it's a double edged sword kinda thing. I am an aerialist so I always thought aerialists were in pain all the time. I'm starting to wonder if that's not the case. Does exercise cause you more pain than others? For me it's not just being sore but way more than that. I love Pilates but I've had to stop doing it because I get such bad migraines from it. Same with crunches. I was diagnosed with tension migraines 2 years ago because of my neck. I've had TMJ since I was 14 (also the earliest age I remember having pre-syncope upon standing) and braces made it -TMJ- worse, even though they said it would make it better. In the past year or so I've noticed that I can't sing or talk without my jaw dislocating multiple times. I've had oral surgeons talk about how my jaw dislocates but nobody seems to put any of these things together. My echo came back normal so I'm a bit discouraged to continue for a diagnosis. :/

[@beccachambers4007]

Great video as ever, where did you get your finger splints from? My fingers and both thumbs are dislocating 15-20 times a day and are causing me lots of pain. My physio said when I see my rheumatologist they can give me them but that’s not until January next year and I can’t wait that long! I’ve looked everywhere and can’t find them😬Any advice?😅xxxx

[@amyleefisher52]

Becca DoesMusic mine are called oval 8 finger splints, hope this helps 💓

[@TheAlfakitty]

Hi Amy - Can you please share the brand of your flesh-colored finger splints, and where you purchased them? Thank you for your wealth of information.

[@avahill3946]

what kind of joint pain did you experience? like your joints were too weak to hold you? shooting pain? a feeling of getting inflamed temporarily, length of lasting pain depending on the joint. and like in your spine?

[@infernalbunny]

I think I may have EDS because I’m hyper mobile and can actually voluntarily dislocate my hips, have always had occasional excruciating pain in my lower body (thighs, knees, calves, even down to my toes) if I’m on my feet for too long, and I’ve always had digestive and urinary problems. I’m worried I’ll never get diagnosed or help for it because healthcare is too expensive in the U.S. for anything besides conditions that need immediate treatment. My parents always tell me, “If you get diagnosed, then what? The doctors can’t do anything about it anyways.” 😓

[@romycullen17]

I live somewhere with terrible healthcare system and no access to genetic testing but girl please see anyone who could get you any care. And learn learn learn. You want your body to be as healthy as possible for as long as possible.

[@jacquelinezaitz1252]

I’m in the exact same situation. My extreme joint pain, hyper-mobility, nerve damage, and urinary problems have all been brushed off as “trauma” from being a gymnast for 16 years. I’ve been told by 3 different doctors, including a neck and spine specialist, that my symptoms will go away. It’s been 4 years since I first experienced my hip dislocating and I still don’t have answers, but I can’t afford any kind of testing or procedure. My family also doesn’t understand. So I feel ya sis 😔

[@brookeelizabeth8751]

Jacqueline Zaitz hey! Ik this is very late, but I feel you! I was a gymnast for 9 years and a competitive cheer leader for 4. I’ve been to many doctors about joint injury’s and subluxations, as well as breaks. I score a 9 out of 9 on the scale for hyperbole. I have been dealing with joint pain for years now and been told by countless doctors that it will go away. I have as needed pain meds and that helps with pain but not the dislocations and or subluxation. Also with the horrible health care can’t find any affordable genetic testing or skin/ collagen testing. I feel the struggle! Would love to know how your doing .

[@naseerahvj]

Ask your doctor for a referal! I'm in the USA just little things like physio and orthotics can help a TON! Even knowing the cause of your problem be can help treatment a ton. Also high vtm C is important. Don't give up!. Also my aunt died of a mvprolapse so my family has to monitor their hearts

[@opoop45]

Hi Amy, great video! I was wondering if you could let me know the brand of your ankle supports ? I’ve been struggling to find comfortable but effective braces for a while now and I really like the look of your ones. And is there a specific website you order your braces from ? Thank you 😊

[@amyleefisher52]

Emily Louise my ankle braces are called Futuro deluxe ankle stabilisers, They are seriously the best ankle braces I’ve tried! 🙏🏼

[@claudettemonty4077]

I too have EDS and what make me sorry is that my two daughters have hypermobility but a good think, they are follow by chiro and massothérapie when thy have pain or something. My granddaughter has the same hyper mobility too!

[@nattyk4544]

So I was referred to a rheumatologist after bringing up EDS to my primary. When they called to schedule an appointment they said they didn't deal with hypermobility and EDS and wouldn't take me as a patient . Has this ever happened to any one esle ?!?! So now I am just being sent to pain management since there are no geneticists in my insurance network.

[@emmaharris2139]

Yep, rheumatology told me they were only concerned with rheumatoid arthritis 👎

[@naseerahvj]

See a different rhemotologist, call around

[@sweetgirl7229]

I’m sending prayers and love for you ❤️❤️

[@mckennahurley2153]

I commented on your other post but I have EDS also , I’ve had 9 knee surgeries in 4 years because my collagen continues to tear my donor ligaments. Along with that I have POTS and also MCAS (mast cell activation syndrome)

[@jadekimmm2767]

Great video love those zebra braces 🦓✨ I wonder do you have a cross over type just the geneticist I seen said they can only rule out the other types as there isn’t a gene for the hyper mobility type yet they are still trying to find it xxx

[@amyleefisher52]

Jadekimmm I have HEDS and what I mean when I say get genetic testing is you need to rule out other types of EDS x

[@sydbookstaff2185]

hi, I also have EDS. and i was wondering how you deal with what people say. i’ve had a lot of people not believe me and say that i’m lying about injuries that I have. do you deal with people saying this? if so, what do you do?

[@Dulcimerist]

I mention I have a genetic mutation. Sometimes I'll contort my body to gross them out, and then mention that all of my joints do that and it really hurts.

[@wilcrane1980]

I may have this condition. Server doctors have said this is an huge possibility for me, and I’ll be seeing a geneticist in March about this since if had issues with my joints my entire life. It was just my shoulders until around 7th grade. Now that I’m in 9th grade nearly every joint sub-locates or dislocates.

[@megans.7690]

Hello! Thank you for sharing your story. I'm a nurse and I I can't help but wondering if you'd ever get a PEG or J tube placed instead of your current feeding tube? This way, you can give your nose and throat a much-needed break. What are your thoughts on this? Have your doctors/medical team brought this up? Much love on your journey

[@velvetvel9763]

I have lupus and I have some of the same issues!

[@leecia1997]

so I am 21 years old...I have had joint pain and inflammation in many joints almost all of my life, I have scored at least 4 that I can 100% gaurentee on the beighton test, and at more than 1 doctor has brought up EDS with me and my rheumatologist has pretty much put me on the back burner when I asked to be tested and has refused to acknowledge it UPDATE: I cand do everything you can in the pictures you showed.

[@KaityJane1995]

You can request to be sent to another rhumatologist, I'm waiting to see one at the moment

[@leecia1997]

I was finally referred to a different Rheumatologist and he's really nice, he spoke with me for a long time and just felt how my body moves. Also he said that I might have to go to a Geneticist @@KaityJane1995

[@KaityJane1995]

@@leecia1997 I was referred to a rhumatologist too,.. still waiting for appointment though, they took bloods on the 1st April, said they would take 3 weeks,.. then could be 3 months for rhumatologist appt :(

[@leecia1997]

Oh no! My appointment took a month and a half and I got blood taken about 3 and a half weeks ago but my doctor is out of town and I have to wait until Tuesday to talk to him about it, but I hope everything works faster for you cause 3 months is a long time@@KaityJane1995

[@clunassssas7676]

How do you find a genetic specialist though? My pain specialist told me hes confident i have EDS but my family don't believe i am even sick without a diagnosis for proof..

[@meganshergold2777]

I have a question for you can you wear dresses and high heels for a special occasion I'm just very curious I'm so sorry keep up the good work your inspirational KZbinr

[@immortalvelociraptor7810]

Question, how do you get over the fear that something is all in your head and your just waisting everyone’s time? I’m really bad at telling people when I’m in pain or in need of medical assistance.

[@immortalvelociraptor7810]

Christina Moore you’re so nice. Thank you!

[@emilyjane7166]

Have you found a comfortable pelvic splint/ brace? The one I have is so uncomfortable and just a pain in the butt 😂 (tight butt muscles and cramping) I scored 5 on the scale and get dislocations at least once a week except my pelvis slides out of place at least 10 times a day but mine is just due to hyper flexible joints and the hormones that are released during pregnancy (after having 3 kids)

[@brie6974]

Im trying to figure out if I could have eds or not....so many of the symptoms you talk about sound like what i have.....i already have been diagnosed with gastroparesis...i was wondering ...do u have trouble getting blood work? The doctors can never get my veins unless they use a tiny needle on my hands.

[@claudettemonty4077]

When you said that you have pain in your pelvis, I want to know is that when you sleep in your side and have pain at the place where the top of femur go in the pelvis and have problem to walk for sometime??

[@annapotts2568]

Whats the first step thinking you have POTS or CFS? Will just my local gp be able to check me? I got about a 5 on your mobility chart heh!

[@LumocolorARTnr1319]

Have you ever had both shoulders pop out at the same time?

[@sashahempsall9901]

I am at 6 month and no diagnosis can't feel my feet memory loss I am diagnosed with myotonic dystphy and I am telling you I am sick of being fobed off by genetic doc and gp the head ache are so painful and panadol and nurfon aren't strong enough and I have bad joint along also undergoing IVIG treatment

[@Mary-op8hi]

Okay so I have a pretty urgent question for you Amy ............ WHERE DID YOU GET THOSE ZEBRA THUMB BRACES BECAUSE I NEED THEM ON MY HANDS THIS INSTANT AT ONCE IMMEDIATELY STAT IN THIS VERY MOMENT RIGHT NOW IN THIS PRESENT TIME POSTHASTE please and thankyous

[@amyleefisher52]

chronicallyvegann haha! Girl I felt the same way when I first saw them on the website 😂 there from www.ohmyarthritis.com 😂

[@pygmybugs]

Oh, thanks! They have CMC joint braces for super cheap!! I've just been taping myself up like a boxer!

[@jen-nee]

At what age did you start getting joint pain and dislocations or have you had them all your life?

[@smashyabackdoorin]

Is there any other conditions that go hand in hand with EDS that you don't have

[@amyleefisher52]

Tight Lines probably but I’m not that informed, there are more minor things like eye/sight problems ect xx

[@hollysingline3133]

Yes there are a lot ie hearing loss, eye sight issues, hypotonia just to name a few. 😎

[@abigailkessler796]

I have a friend and her Mum has EDS. She has had to have multiple hip surgeries and none helped. Now something is wrong with her back and she has the same type of EDS.

[@laurac7623]

Hey Amy just wondering do you have just hEDS or another type as well? When I saw my geneticist about suspected hEDS she told me they can't test for it yet because they don't know what gene they're looking for

[@allie4680]

Laura C you’re right they can’t test for hEDS. I think she has hEDS but they usually test just to rule other types out. I have cEDS and although there are known genes the test we used only identified it 50% of the time unfortunately

[@naseerahvj]

H eds has criteria

[@Chickdan242]

how long did it take until you had to get a feeding tube

[@lizshaw7906]

Hey did u have any signs as I young kids (looking back now) or way it only as a teen did u notice?? Thanks

[@naseerahvj]

Same signs as adults. All my kids likely have it. Thin skin, sensitive skin, reactions to adhesive, blue rings around eye, papulates in heals, hypermobility, deep sunk in eyes, difficulty with handwriting, flat feet, being clumsy (one of my kids "trips on air")

[@kimdavis2433]

When you said "the last thing I want to talk about is aids" I first thought you were saying you had AIDS on top of everything else 😱

[@mariamorales8476]

SAMEEE then my brain was like aids=help calm down

[@Dulcimerist]

I read this comment while watching the early part of the video, but the giant "AIDS" on the screen later on still scared me!

[@a.neko.77]

I remember a few years ago I was watching a youtuber called chronically Jacque She had chronic illnesses like Eds and gastroparesis Then I remembered her because I stopped watching for a bit I a video that popped up when I searched her, somthing along the lines of Jacque’s death I didn’t believe it and thought it was a prank I was so surprised and upset that she had passed The reason of her passing was because her feeding tube got twisted and knotted around her intestines and it caused her to eventually pass I never realized feeding tubes were so dangerous

[@shiggys.nuggies3794]

Where are your thumb and wrist splints from?

[@thewalves5719]

I can do this with my arms! And my skin is also flexible!DO I TBM HAVE EDS?

[@elisabethhagstrom6945]

Really good and informative video on your EDS👍

[@rebeccaneale3764]

Do you know what that ankle brace is called?

[@mylifepostpain3705]

You are very inspiring!

[@chadbivona3572]

Thank you this video!!

[@nikki10114]

Your so beautiful. I love your accent. I hope your habing a stable day love.

[@motionless_horizon]

Hi Amy, so I was wondering what type of finger braces you have? I can only find the ones that completely immobilize your fingers

[@amyleefisher52]

Lila Baxter I have the oval 8 finger splints and they are fantastic! 👏🏼

[@ChurchillCaneCorso]

Good morning from the states Amy!! I will do my best to try and spread the word.. Donate if I can.. We together can make changes.. ❤❤❤❤

[@amyleefisher52]

Angela Lilly thank you! 😊🙏🏼

[@ChurchillCaneCorso]

Amy Lee Fisher ❤❤❤

[@itsanorristhing3825]

Totally agree from the states too

[@melissalynn5585]

I also wanna know do you ever have to do steroid treatments for your joints? Or would that be too much of a shock to your immune system?

[@gillyana]

Melissa Lynn I had rounds of joint injections of steroids and refampacin for my EDS unfortunately I ended up with MRSA in my bone and it ate away my knee cap and part of my thigh bone and shin bone. I had to have a year on tiecoplanin IV and my kneecap removed and a gentomycin ballon in its place. A year late (28th April 2011) I had a total knee replacement. Which I'm now in some medical book as despite ortho saying having a knee replacement I still had extreme hypermobility which was "abnormal' lol x

[@melissalynn5585]

Just Gil x I'm sorry to hear that. Hope you are doing better now!! ❤

[@gillyana]

Melissa Lynn same old same old just plodding on xxx

[@melissalynn5585]

Just Gil x that's good to hear! 💝💝 Prayers for better days! 💜💙💚💛❤

[@margaretmayberry7766]

Ok first of all bless your heart , I'll pray for you daily. My name is Margaret and I would like to ask you a question . Ok first of all I have AIDS and I'm wondering if what you have is at all like what I have ? I have had AIDS for 30 yrs, I have no immune system left . And also I have fibromyalgia and I have chronic pain, so it sounds like we have a lot in common . I live in Washington state , I just found you today , I'll get back to you later God bless you

[@romycullen17]

I saw a specialist in rare illness because we don't have geneticists here. He was the one that diagnosed me, pretty sure it's hypermobile type. Getting your genes testing is really expensive, so if someone else lives somewhere where they can't get a genetic test but had had multiple studies to get the diagnosis don't think you don't have it then. I'm sorry but I wanted to clarify this, sure we would all love to have our genes tested but that is NOT the only way to get a diagnosis. I'm sorry but as someone who has had a very late diagnosis and can't even get to see the one doctor properly because of the number of patients, this is just so appalling, please be aware you are in a privileged position when it comes to medical care. I hope one day we could all get the care and tests we need.

[@naseerahvj]

Sometimes genetic testing is covered I live in USA and thought it wasn't and our geneticist said it is sometimes

[@isabella.l.flores]

hey i have eds! im only 14 and am a dancer. my friend pointed it out to me and then her mom (who is basically a doctor) told me i definitely have it. i have really stretchy skin and hypermobility. i always get injured and my dance teachers hate me for it. my orthopedic just diagnosed me with ligamentus laxity but i have not yet mentioned the un official diagnoses of EDS. got any advice? @amyleefisher

[@hollyshortland2490]

I have VEDS ( eds type 5 the “worst kind” ) and I’m getting sent to a pain clinic so wish me luck lmao

[@ilTHfeaa]

im so confused about that first picture? can normal people not like touch their other shoulder liek that or soething? i can do that too but didnt think it was a special hypermobile thing which i have way more than i thought lmao

[@amyleefisher52]

Melody I’m sure some people can just in that picture my shoulder is dislocated 😅 but being hyper mobile is pretty common especially in women!

[@Daaaanielle]

Yooooooo I got a 9/9 or however much you can get o the Beighton scale!!!!! Am I ok? Should be worried? I always thought it was normal to touch your thumb to your arm lol.

[@brooklyndonatone7102]

Consult with your doctor.

[@gemmi1]

Will any of your related conditions get worse/better/disappear?

[@isabelle9674]

Plastic splints make your fingers sweaty, don't they? My aunt reccomends silver splints because of that reason. What are your experiences with splints? Ps. My fingertips are more flexible than yours?!

[@watchthisheadspace]

I was told you can't be genetically tested for EDS as they haven't identified the genes causing it. Do you mean they genetically tested for the other types? All information online says the same about no known gene cause. Just interested as I have it myself! x

[@amyleefisher52]

Emily Torrent I’m not sure I always thought they knew which genes or some genes that mutated to cause it hmm interesting 🤔

[@franlats0705]

They have identified the genes for some of the types (classical for example) however heds however still hasn't had a gene identified x

[@watchthisheadspace]

There's 14 types identified now :)

[@jkfredette]

I have the dumbest EDS video idea. You should put on as many of your splints/braces as you can at the same time.

[@roseedzerza6647]

Will LOVE AND THINK OF YOU ALWAYS DEAREST LITTLE AMY. R🌹🌹

[@roseedzerza6647]

Rip ❣️🇨🇦

[@melissalynn5585]

You said your stomach is paralyzed and so is your intestines now. I know you use a feeding tube for your stomach, do you have anything to help your intestines specifically? Just wondering.

[@amyleefisher52]

Melissa Lynn my intestines are partially paralysed or they move slow the emptying is delayed. I’m on medication to help but my absorption is still bad, but I’m seeing my gastric surgeon on the 24th to see what my options are xx

[@melissalynn5585]

Amy Lee Fisher I hope it goes well for you! Good luck, love! Keep us posted on that. I have intestinal problems so I feel for ya! I take medicine twice a day to actually slow my motility down cause without it I would not be able to stray too far from a restroom.