When I don’t want to get into it I tell people, “my joints are all loosey goosey and sometimes my limbs want to run away from me and forget I have skin containing them”
Love this!! Your keeping it upbeat and funny. I always tell people I’m like Humpty Dumpty just pick me up and put me back together again. 😂 I love keeping things light with others.
The medical gaslighting is brutal. I went 25 years from first complaining of pain, before being diagnosed. It makes seeking help for each new symptom/comorbidity that much harder. Here in solidarity with you, Stevie ✊🏼 My way of giving a simple explanation is to say that each morning I wake up feeling like I ran a marathon the day before!
It's cool to see more people talking about EDS on the internet! I also have HEDS and I've lost count of how many times I've been told that I'm faking it since it's not visible, so more people being made aware of it helps so much! (Love your content btw!)
I wish there was more awareness of EDS within the actual medical community. I feel like I have to educate all my doctors about it and how it can impact so many things. Doctors don't love to be educated by patients either so it can be met with gaslighting. I thought the hardest part was getting the initial diagnosis but now on the other side dealing with just the lack of knowledge is such a challenge!
Lately I’ve had friends who have EDS tell me unprompted that they think I have it too. I knew about EDS from your videos. I already am way in over my head in medical debt from going to a billion appointments where they tell me I’m fine because I’m 27 (this has been happening for years.) I’ve had IBS & digestion issues my entire life. This is the first time I’ve heard someone say “I can feel my digestion.” My eyes widened. That’s exactly it. (Currently typing this in a world of pain from something I ate, idk.) I used to get in trouble as a kid for being in the bathroom too long. Doctors also have me on way way more vitamin C than is usual. My knees make sounds that have made strangers gasp. Sometimes they just stop working for a second and I have to catch myself. All my joints click and hurt. I remember my hands clicking as a kid, I used it like a party trick to gross out my classmates. I guess it makes sense I became a comedian, lol. When I stand my heartbeat goes really fast & I get dizzy. I’ve tested my heartbeat. It goes up by quite a lot when I stand from sitting or sit from lying down. And yeah, other random pain, fatigue, etc. and all the fun mental health problems to go with it. These videos are helpful. Thank you for making them. I’m hopeful someday I can afford to try & get a diagnosis again. Just any help would be amazing, cause it’s only gotten worse as time has gone on. I swear folks with chronic pain have the best sense of humor, though. So at least there’s that!
First time someone evaluated my hypermobility, he diagnosed me with HSD and said "this doesn't seem like EDS to me. go to physio." my physiotherapist took one look at me, referred me to ANOTHER physiotherapist who was a pro with hypermobility, who again, took one look at me and said "i think this is hEDS. let's get you diagnosed". one year later from that point, i was diagnosed with hEDS. physiotherapy has been the best thing to happen to me in terms of helping joint pain, because building more muscle helped stabilise my joints more. At this point I'm at the really fun, paradoxical point of my life where I'm excited to start a barista job including a whole lot of walking, but also actively considering getting a wheelchair, lol. Just goes to show how unpredictable our condition can be sometimes!
I really appreciate all the people telling their EDS stories out there (I watch you and also Jessica Kellgren-Fozard and also King Kogi/EYK). I'm someone who doesn't have EDS but is a young person with shit joints (from pes cavus and Achilles tendinosis), so if I am on my feet for a while for work, I will come home and all my joints ache to the point that I can start crying. This also means that I have to wear doctor-prescribed insoles and that, at least until I can get physical therapy, I can't do any exercise with impact on my joints. All that is to say that it helps to hear others talking about their joint pain (even though it's very different in a lot of ways and isn't merely joint pain) because it's validating and makes me feel less alone when getting out of bed in the morning every day means finding out how much pain I'll be in that day.
I have "Generalized Hypermobility Syndrom" with is essentially "EDS, but the genetic test to too expensive". I'm 30, my hips just started hurting. I have heartburn and a sliding hiatal hernia. This makes eating hard. I'm ADHD and medicine effects me in really strange ways. I used to be fit and now standing is hard. EDS is no fun and it's basically invisible, which makes it hard to communicate with people.
hEDS diagnosis doesn't use genetic testing. It's the only type without a known genetic marker. there's still a really detailed criteria to be met based on symptoms and medical history. a lot of specialists think HSD and hEDS are one in the same, but many people with HSD don't meet the hEDS diagnostic criteria. it's something worth looking into. i'm diagnosed with hEDS even without genetic testing to rule out the other types, because my symptoms best match hEDS and i meet the criteria
@@shankiepup yes, and if you don’t meet the hEDS criteria and vEDS (the one that can be fatal) is ruled out, then you usually get an HSD diagnosis, because insurance doesn’t want to pay for the testing. please remember there are still 13 types to EDS and hEDS isn’t the only one.
Also, kids are generally more flexible than adults, so it could go unnoticed until they are a little older I use a magnesium lotion for my restless leg syndrome that I find extremely helpful. Might be something to look into
hi, stevie! i have an autoimmune disease that really affects my quality of life. i got diagnosed a few months ago but the symptoms have been present for years. up until my diagnosis i remember asking myself, "why is my body so weird? why am i so fragile and sensitive?" when i finally got the answer to those questions i thought i would feel better about myself but i still experienced a lot of self-hatred. my symptoms made me feel inferior to others, incompetent in life and thoroughly useless. your videos about EDS help me tremendously. im aware we're going through different things but i can relate to some of your symptoms and the fact that youre so outspoken about your disability makes me feel less isolated and unworthy because i really respect you as a person and i realized that id never in a million years judge you for your struggles, so... why am i being so hard on myself? im sorry for rambling. what im trying to say is that your content helps A LOT of people for countless different reasons, so from the bottom of my heart: thank you! ❤️
I suffer from, "Post Treatment Lyme Disease Syndrome" (It used to be called, "Chronic Lyme Disease"). I was misdiagnosed for almost two years; which allowed it to wreak havoc on my mind, body and spirit. Symptoms: - Chronic Pain - Chronic Fatigue - Cognitive Difficulties (Broad Cluster of Physical, Cognitive and Psychiatric Symptoms) - Intermittent Fevers, Chills, Sweats - Chronic Inflammation - Roving Aches and Stiffness - Numbness and Tingling in the Limbs - Dizziness and Shortness of Breath - Tremors - Respiratory Infections - Sore Throats - Stomach Pains - Heart Palpitations and Arrhythmia (Irregular Heartbeat) - Anxiety and Paranoia - Hallucinations - Rage - Hearing Sensitivities - Dysphonia (Vocal Cord Damage) - New Food Allergies - Multiple Chemical Sensitivities - Seizures - Severe Headaches and Neck Stiffness - Bell's Palsy - Arthritis/Joint Pain/Swelling (Especially of the Large Joints) - Intermittent Tendon, Muscle, Joint, Nerve and Bone Pain - Inflammation of the Brain and/or Spinal Cord - Shooting Pains, Numbness and/or Tingling in the Hands and feet *I am Immunocompromised and Antibiotic Resistant, as well. I also suffer from Agoraphobia (From living in an Assisted Living Facility), Depression and Anxiety. Thank you, Stevie, for shedding light on, "Invisible Illnesses." 💐 *May Anyone Who Suffers Find Relief.* #NeverGiveUp #ShowEmpathy #MentalHealthAwareness
I’ve been struggling with chronic illness for years. It’s videos like these that have really helped me. Even though I’m sure I have EDS and have discussed it with several doctors who agree, years of medical gaslighting and being told I’m fine have completely destroyed my sense of authority. Thank you for reminding me and others that our pain is real and random dislocations are, in fact, not the common experience 😅 I also really value the perspective of a fellow queer person navigating a complex health situation. Thank you for sharing!
Hiii! Thank you for raising awareness! I have EDS type III and when I was in my late twenties I spent most of my time in therapy and there were times where I couldn't even go to the bathroom by myself. Tons of inyections, pain killers and casts. I felt pain all the time, thus had stomach and bladder issues due to my organs being too flexible. Now I am 30, I nearly feel no pain, I have tons of energy and, ironically, have less back pain than my non-EDS friends who have lumbalgia due to spending lots of time in front of their PCs. I had wonderful therapists that helped me get through and the key was strength exercise for no more than 15 mins in a daily basis. I tried pilates (the worst an EDS person could do said by my doctor), yoga (didn't help that much), barre and such. What worked for me was basic P.E calisthenics like push ups, 90° squats, hollow crunches, and so on. I also did bellydance as it was a low impact activity that challenged my neuroplasticity and kept me moving. To avoid bladder issues I had to change my diet and eating habits, as well as drinking habbits. The same for my stomach as I had to set the limit myself due to my faulty stomach never being able to fill up and having gastric problems. It is possible to have a better life with EDS and, as I said, I am overall healthier and in less pain than my coworkers who were born healthy but did not take care of their body. I still twist my ankle from time to time and joints still pop when they shouldn't but it's much less common and less painful when that happens. Don't give up, there is a way to make things bearable if you are commited to your health and wellbeing.
I was recently diagnosed with Sjogren and Fibromyalgia after 2 years struggling with doctors and medical procedures. The pain is sth and mental health is all messed up! Putting everything together with the help of family, friends and lots of therapy! Thanks for sharing stevie, love u ❤
EDSer here!! LDN absolutely changed my life. pain decreased by like 80% for the entire time it’s in my system. magical magical drug and finding the right provider who will prescribe it is difficult but absolutely worth the effort
I got tested for POTS yesterday, and my cardiologist told me that I almost met the diagnostic criteria but I was just slightly too low during the test so he wouldn't clinically diagnose me. Ugh. I wanted the diagnosis for government forms to go along with all my other chronic illnesses.
I likely have H-EDS (I’m on a 6 month wait list for a specialized clinic for diagnosis), and it’s really awesome to see you and others start talking about it more! It’s given me the courage to continue to stand up for myself and pursue medical care
YES to all of this. I was lucky in that my mum was a real fighter on my behalf and took me to doctors, but then those doctors all did the "it's normal" thing, trying to convince her I was fine because they didn't understand. And she was like "um no, my 7 year old having the hip pain of my great grandmother and being unable to walk sometimes because of her joints seizing is most definitely not "just growing pains probably".
Fellow zebra here. Dx came at 44 though symptoms started around 13( puberty) I noticed my daughter started having issues post puberty and took her back to genetics dr she saw when young. Got a dx like we were being told we had a cold. No big deal. Followed up with invantea test to be sure not veds. I'd been looking for answers my whole adult life. My daughter has constant subluxations, slipping ribs etc I don't. I have gastroparesis malabsorption & neuro problems she does not. Both have wide spread pain fatigue orthostatic intolerance brain fog etc. Each case is different & the lack of awareness & care is horrible
Almost certain I have this. I've been trying to get diagnosed for 5 years with this specific disorder, and trying to get doctor's to acknowledge I even have pain in my body at all for much longer. They've done countless blood tests, feeling my joints, referring me to physio, radiography, ect but to no avail. For years they've told me "it's because you're overweight" which ⚠️TW: caused disordered eating where my weight plummeted⚠️. Still telling me it's because I don't exercise enough (I am very active though) or I'm overweight (by the new nhs measuring method, I'm actually healthy) . I want to scream at the doctor's everytime I'm there because those are not reasons to be in severe pain all the time. I have a chronic mental health disorder and a rare autoimmune disorder, so it wouldn't be surprising at all if I had this too. Sorry for the vent, felt like this is a safe space to express the frustration I'm going through. Thank you for posting this video 🖤
I to got the gift of a classical EDS diagnosis for Eds awareness month. I also was sure my symptoms counted as “ mild” until the rheumatologist started gasping at my “party tricks” and ranting about how no one had said anything to me about it before now because it’s “ extremely obvious”… so that’s fun.
I have a friend whose daughter was diagnosed with EDS thanks to you and Jessica. All her symptoms lined up with what you all talk about so I suggested to her mom, who was so frustrated trying to get her 15 year old a diagnosis to watch you alls videos where you talk about EDS. She pushed and got the genetic test. Turns out both her daughters have it one worse than the other. Thanks for putting it out there.
I'm officially diagnosed with Hypermobility Spectrum Disorder but I'm pretty sure it's hEDS. I'm always on the look out for new supplements. I swear by zinc and magnesium! I take about 800mg magnesium at night and have epsom salt baths. I've recently started Maca. I've seen some positives with energy levels but it's early days. I also take a high dose vit B complex, d3 and omega 3 6 9. Will be checking out LDN!
It's like all the jokes that were left out of previous videos have all been collected and dumped into this one 😂😂 OR Tryna have as much humor throughout a q&a on a not so fun topic Thanks for making this, Stevie!
I'm an EDS'er I've been vitamin d deficient since birth, so when I take it it helps, but what's really been a lifesaver has been magnesium, when I started taking it, my headaches went from several times a week to a headache/migraine a few times a month, if that. Highly recommend.
I have had Trigemimal Neuralgia for many years. I've seen several neurogists but none of them ever gave me a cause. Then I got diagnosed with hEDS and I did the research myself and low and behold there is a link between hEDS and Trigeminal Neuralia. Yet these professionals couldn't figure it out?
I recommend Cymbalta for the joint pain. Almost everyone I’ve recommended it to texts me a month later with like five paragraphs of thanks. Different medications affects everyone’s bodies differently but Highly recommend asking your doctor about it
As a way of explaining EDS to people I tell them that I have issues with my Tissues or that I am a house under construction and I was built with crappy materials. I have the Classical subtype. Waging your energy is what I have to do, Do I want to go out to eat lunch with my family and then go to work that night and have less energy to do my job or do I want to stay home and save my energy for my work shift. Ugh, I hate when people gaslight my friends who have EDS, they just plain act stupid when I tell them I have it. Which is annoying! Because they are in the job market for helping people feel better and find out what is going on with their bodies. I tell people that about “ why the Zebra “. I’m in a community that is supportive of Dazzlers.
Stevie I love you so much you're such a beautiful amazing sweet person your positivity through your disability is very inspiring you're an inspiration to us all stay safe 💙
Better help is a scam. They don't check therapist qualifications. They sell customer data. They are a highly unethical company. I got scammed by one of their therapists who gave me less than half of the access I was promised
I have HEDS and started taking ldn and omg. First energy wise I havent been able to do this much in a day in absolutely years! I was basically in bed rest around 9 hours a day... and now I got a freaking dog! My joint pain is still strong but in certain joints there is definitely a difference.basically I personally really recommend it.
I take MSM and vitamin D and I have found it's caused a complete 180 in my physical as well as my mental health! I always have suspected I have a connective tissue disorder but have always been laughed off when pursuing any diagnosis, interesting that the same things that help you have helped me
Greetings from the pleasant farmland and quaint villages of central New Jersey! I live next to two farms, and can get farmer's market things from them every day of the week! :D
Actually, fun fact, everyone's height changes throughout the day or over the course of a longer period. It depends on things like how much you sleeps or exercice you've done. We can loose several inches within a day
I hate that most diseases of chronic pain have no solution. We begin looking for ways to help our individual bodys without having answers from the medical world ... it's tiring. Especially when in cases like mine the specialists claim there is a problem, but do not know what it is exactly and what name / category to give it. I just want valid solutions for my pain...that's all i ask for. ***I have chronic pelvic pain. Maybe endometriosis but there is not enough evidence for that either...
Thanks for the awesome video! So I do have a question! I don’t know when, if ever, you’ll see this. I’m from the US and the medical gas lighting you mentioned it real. I’m in my mid 30s and I am hypermobile af, have pots, mast cell issues, vitamin deficiencies left and right, joint pain and instability, heart arrhythmias, seizures at night on occasion… just so much that I manage and roll with. To this day, I get conflicting answers from doctors. I meet all hEDS criteria minus one thing in this long list. So the genetic counselor says oh, you probably have HSD. The geneticist when she comes in minutes later says, oh I don’t diagnose HSD. So my primary care and everyone “treat me as though I have EDS or HSD” but my doctor says it isn’t necessary to diagnose me. I’ve been living with the same issues since high school, they’re just getting worse. WTF? So my diagnosis? I don’t have one other than a long list of other conditions and stuff. My question: are doctors in the UK any different? Any more supportive? I’d love to know bc the reality is, they admit I fall well into the HSD category yet don’t feel it’s necessary I have a formal diagnosis. It makes it difficult when I go to a new specialist, like why you got so many problems, lady? 😂
as someone with a sort of up in the air diagnosis (probably cleds, but the only way to confirm is an out of pocket blood test and no thanks), maybe this isn’t what you want to hear, but the exact diagnosis doesn’t really matter. there is no treatment for any type of EDS or HSD. there is only symptom management. that doesn’t change whether you’re officially diagnosed or not. if you’re in pain, you treat the pain. if you’re having heart problems, you treat those. whether you can tie it all up in a neat bow really doesn’t matter because it won’t open up any new treatment options that you wouldn’t have without it. it’s not the doctors being unsupportive (although sometimes they are in other ways), it’s them just trying not to continue to spend resources to seek an answer that might be impossible to find and won’t give you any new information or help.
This was so interesting and you totally enjoyed this video a lot and I think you’re hilarious and you explain this so well and thank you so much for doing this video.
I use curcumin for pain and inflamation and nerve pain. And cannabis for sleep, seizures and pain And charcoal for my digestive issues now - we think high histamine I was on cyclizine and my body turned on it.
Medical gaslighting really is a thing. I have stories. I've had meltdowns. Finally found a primary care that listens, intently, asks questions, orders tests and scans. It's like a miracle. Only it's finally having decent health insurance in the US.
Thank you so much, Stevie🙏 I learned a lot here. I sincerely hope that more research is done and that you find more things to ease the pain. ❤️. Happy Pride month to you and Josie. 🥰🌈🌈🌈🌈🌈
They diagnosed me with joint hyper mobility instead of EDS.. my joints dislocate and sublux so badly that i was in a wheelchair for 3 years straight and got out of it recently now im back in. Im an 8 or 9 on the beighton score test. They say i dont need a wheelchair for my condition like people with EDS when i literally can't walk because my body falls apart when i stand.
I'm currently in the process of getting a diagnosis and it's going about as well as can be expected. At least I haven't gotten any fatshaming or "you shouldn't be using a wheelchair" this time round. I basically got prodded a bit, got pronounced hypermobile (which my gp already did just from me fidgeting with my hands lol) and got sent off for bloodwork. Had the appointment to discuss the results yesterday, nothing showed up. Shocker. So now I'm getting sent on to a rehabilitation doctor or something. Basically got told that no diagnosis is a good thing. No it's not, I need a diagnosis for benefits (or at least for a re-evaluation, because currently it's based on just my autism and adhd and they keep pressuring me to work) and accessible housing 😮💨
On a positive note, my mom suddenly suggested I'd look at the dutch eds foundation and they have so much info about it I didn't know yet and found even more symptoms and co-morbidities that match.
Got two wisdom teeth removed on one side and the pain that has lasted the longest is because my jaw subluxated on the side they were working on. I don't recommend yawning with a mask on with a funky jaw.
Hi hi. I know my username is silly but plz ignore for this comment. I'm in gradschool to become a clinician of prosthetics and orthotics, and I got assigned EDS type 3 for my clinical science presentation. I knew as soon as I got assigned this that I'd pull your videos up. Hope it's cool that I'm referencing you for my projectttttt
@@stevie Morning. Most people take vitamin D but there there is also vitamin D1, D2, D3, D4 and D5. The most 2 important form of Vitamin D are D2 and D3 - Ergocalciferol (Vitamin D2) Cholecalciferol (Vitamin D3). Most Vitamin D supplements are made using D2 or D3.
@@stevie some people take vitamin d2 because most vitamin d3 is not vegan, it comes from wool. there is now a vegan source of vitamin d3 and it’s becoming more accessible but d2 is still easier to find for many.
Funny because in France, we call ourselves Zebras when we have high IQ because they're not as common as horses and because their pattern make them unnoticeable and symbolize the "scratches" that life events inflicted upon us by being badly treated because of our differences. This actually fits EDS a lot too ! And since I have both I guess I'm part of two "dazzle" now haha
Not the best thing too have, hope you can find something that helps for real, got worn out muscles (cant find a English term for it ) but i have muscle pain for 24 hours in my hands and sometimes in the rest of the available muscles legs back and neck, they can do nothing about it, ye have too live with it they say, well thanx pfft
Both ed's and pots very prevalent in the autistic community, (also ADHD) have you considered autistic diagnosis (?) Thanks for this video I enjoy listening to you talk about all things. Sending spoons?
This is random but i think Billie Eilish might have this. She can put a freakin guitar head in her mouth, contorts her body easily without needing a warm up and constantly gets injured just by jumping while performing
When I don’t want to get into it I tell people, “my joints are all loosey goosey and sometimes my limbs want to run away from me and forget I have skin containing them”
Love this!! Your keeping it upbeat and funny. I always tell people I’m like Humpty Dumpty just pick me up and put me back together again. 😂
I love keeping things light with others.
The medical gaslighting is brutal. I went 25 years from first complaining of pain, before being diagnosed. It makes seeking help for each new symptom/comorbidity that much harder. Here in solidarity with you, Stevie ✊🏼
My way of giving a simple explanation is to say that each morning I wake up feeling like I ran a marathon the day before!
It's cool to see more people talking about EDS on the internet! I also have HEDS and I've lost count of how many times I've been told that I'm faking it since it's not visible, so more people being made aware of it helps so much! (Love your content btw!)
I wish there was more awareness of EDS within the actual medical community. I feel like I have to educate all my doctors about it and how it can impact so many things. Doctors don't love to be educated by patients either so it can be met with gaslighting. I thought the hardest part was getting the initial diagnosis but now on the other side dealing with just the lack of knowledge is such a challenge!
Lately I’ve had friends who have EDS tell me unprompted that they think I have it too. I knew about EDS from your videos. I already am way in over my head in medical debt from going to a billion appointments where they tell me I’m fine because I’m 27 (this has been happening for years.)
I’ve had IBS & digestion issues my entire life. This is the first time I’ve heard someone say “I can feel my digestion.” My eyes widened. That’s exactly it. (Currently typing this in a world of pain from something I ate, idk.) I used to get in trouble as a kid for being in the bathroom too long.
Doctors also have me on way way more vitamin C than is usual.
My knees make sounds that have made strangers gasp. Sometimes they just stop working for a second and I have to catch myself. All my joints click and hurt. I remember my hands clicking as a kid, I used it like a party trick to gross out my classmates. I guess it makes sense I became a comedian, lol.
When I stand my heartbeat goes really fast & I get dizzy. I’ve tested my heartbeat. It goes up by quite a lot when I stand from sitting or sit from lying down.
And yeah, other random pain, fatigue, etc. and all the fun mental health problems to go with it.
These videos are helpful. Thank you for making them. I’m hopeful someday I can afford to try & get a diagnosis again. Just any help would be amazing, cause it’s only gotten worse as time has gone on.
I swear folks with chronic pain have the best sense of humor, though. So at least there’s that!
First time someone evaluated my hypermobility, he diagnosed me with HSD and said "this doesn't seem like EDS to me. go to physio." my physiotherapist took one look at me, referred me to ANOTHER physiotherapist who was a pro with hypermobility, who again, took one look at me and said "i think this is hEDS. let's get you diagnosed". one year later from that point, i was diagnosed with hEDS. physiotherapy has been the best thing to happen to me in terms of helping joint pain, because building more muscle helped stabilise my joints more. At this point I'm at the really fun, paradoxical point of my life where I'm excited to start a barista job including a whole lot of walking, but also actively considering getting a wheelchair, lol. Just goes to show how unpredictable our condition can be sometimes!
My physical therapist is who pointed out to me that my shoulders are extremely hypermobile and started me on considering if I have EDS
Basicall the exact same steps as me... Except it started with a doctor who told me EDS was a "bad" diagnosis...
My go to short explanation is “you know contortionists in circuses? My body does that without me wanting it to”
Actually, a large portion of contortionists have EDS or some connective tissue disease.
@@stevie secret career option unlocked, thanks hEDS hahaha
I really appreciate all the people telling their EDS stories out there (I watch you and also Jessica Kellgren-Fozard and also King Kogi/EYK). I'm someone who doesn't have EDS but is a young person with shit joints (from pes cavus and Achilles tendinosis), so if I am on my feet for a while for work, I will come home and all my joints ache to the point that I can start crying. This also means that I have to wear doctor-prescribed insoles and that, at least until I can get physical therapy, I can't do any exercise with impact on my joints. All that is to say that it helps to hear others talking about their joint pain (even though it's very different in a lot of ways and isn't merely joint pain) because it's validating and makes me feel less alone when getting out of bed in the morning every day means finding out how much pain I'll be in that day.
Thank you for also talking about the mental load of constantly trying to manage symptoms and spoons.
I have "Generalized Hypermobility Syndrom" with is essentially "EDS, but the genetic test to too expensive". I'm 30, my hips just started hurting. I have heartburn and a sliding hiatal hernia. This makes eating hard. I'm ADHD and medicine effects me in really strange ways. I used to be fit and now standing is hard.
EDS is no fun and it's basically invisible, which makes it hard to communicate with people.
Expensive? You must be American, right?
@@greensteve9307 Of course!
hEDS diagnosis doesn't use genetic testing. It's the only type without a known genetic marker. there's still a really detailed criteria to be met based on symptoms and medical history. a lot of specialists think HSD and hEDS are one in the same, but many people with HSD don't meet the hEDS diagnostic criteria. it's something worth looking into. i'm diagnosed with hEDS even without genetic testing to rule out the other types, because my symptoms best match hEDS and i meet the criteria
@@shankiepup yes, and if you don’t meet the hEDS criteria and vEDS (the one that can be fatal) is ruled out, then you usually get an HSD diagnosis, because insurance doesn’t want to pay for the testing. please remember there are still 13 types to EDS and hEDS isn’t the only one.
I have Chronic Fatigue and "I used to be fit and now standing is hard." was very relatable for me.
Also, kids are generally more flexible than adults, so it could go unnoticed until they are a little older
I use a magnesium lotion for my restless leg syndrome that I find extremely helpful. Might be something to look into
Do you mind sharing which lotion it is? My mom has terrible restless leg!
hi, stevie! i have an autoimmune disease that really affects my quality of life. i got diagnosed a few months ago but the symptoms have been present for years. up until my diagnosis i remember asking myself, "why is my body so weird? why am i so fragile and sensitive?" when i finally got the answer to those questions i thought i would feel better about myself but i still experienced a lot of self-hatred. my symptoms made me feel inferior to others, incompetent in life and thoroughly useless. your videos about EDS help me tremendously. im aware we're going through different things but i can relate to some of your symptoms and the fact that youre so outspoken about your disability makes me feel less isolated and unworthy because i really respect you as a person and i realized that id never in a million years judge you for your struggles, so... why am i being so hard on myself? im sorry for rambling. what im trying to say is that your content helps A LOT of people for countless different reasons, so from the bottom of my heart: thank you! ❤️
I suffer from, "Post Treatment Lyme Disease Syndrome" (It used to be called, "Chronic Lyme Disease"). I was misdiagnosed for almost two years; which allowed it to wreak havoc on my mind, body and spirit.
Symptoms:
- Chronic Pain
- Chronic Fatigue
- Cognitive Difficulties (Broad Cluster of Physical, Cognitive and Psychiatric Symptoms)
- Intermittent Fevers, Chills, Sweats
- Chronic Inflammation
- Roving Aches and Stiffness
- Numbness and Tingling in the Limbs
- Dizziness and Shortness of Breath
- Tremors
- Respiratory Infections
- Sore Throats
- Stomach Pains
- Heart Palpitations and Arrhythmia (Irregular Heartbeat)
- Anxiety and Paranoia
- Hallucinations
- Rage
- Hearing Sensitivities
- Dysphonia (Vocal Cord Damage)
- New Food Allergies
- Multiple Chemical Sensitivities
- Seizures
- Severe Headaches and Neck Stiffness
- Bell's Palsy
- Arthritis/Joint Pain/Swelling (Especially of the Large Joints)
- Intermittent Tendon, Muscle, Joint, Nerve and Bone Pain
- Inflammation of the Brain and/or Spinal Cord
- Shooting Pains, Numbness and/or Tingling in the Hands and feet
*I am Immunocompromised and Antibiotic Resistant, as well.
I also suffer from Agoraphobia (From living in an Assisted Living Facility), Depression and Anxiety.
Thank you, Stevie, for shedding light on, "Invisible Illnesses." 💐
*May Anyone Who Suffers Find Relief.*
#NeverGiveUp #ShowEmpathy
#MentalHealthAwareness
I’ve been struggling with chronic illness for years. It’s videos like these that have really helped me. Even though I’m sure I have EDS and have discussed it with several doctors who agree, years of medical gaslighting and being told I’m fine have completely destroyed my sense of authority. Thank you for reminding me and others that our pain is real and random dislocations are, in fact, not the common experience 😅 I also really value the perspective of a fellow queer person navigating a complex health situation. Thank you for sharing!
Hiii! Thank you for raising awareness! I have EDS type III and when I was in my late twenties I spent most of my time in therapy and there were times where I couldn't even go to the bathroom by myself. Tons of inyections, pain killers and casts. I felt pain all the time, thus had stomach and bladder issues due to my organs being too flexible. Now I am 30, I nearly feel no pain, I have tons of energy and, ironically, have less back pain than my non-EDS friends who have lumbalgia due to spending lots of time in front of their PCs. I had wonderful therapists that helped me get through and the key was strength exercise for no more than 15 mins in a daily basis. I tried pilates (the worst an EDS person could do said by my doctor), yoga (didn't help that much), barre and such. What worked for me was basic P.E calisthenics like push ups, 90° squats, hollow crunches, and so on. I also did bellydance as it was a low impact activity that challenged my neuroplasticity and kept me moving. To avoid bladder issues I had to change my diet and eating habits, as well as drinking habbits. The same for my stomach as I had to set the limit myself due to my faulty stomach never being able to fill up and having gastric problems. It is possible to have a better life with EDS and, as I said, I am overall healthier and in less pain than my coworkers who were born healthy but did not take care of their body. I still twist my ankle from time to time and joints still pop when they shouldn't but it's much less common and less painful when that happens. Don't give up, there is a way to make things bearable if you are commited to your health and wellbeing.
I was recently diagnosed with Sjogren and Fibromyalgia after 2 years struggling with doctors and medical procedures. The pain is sth and mental health is all messed up! Putting everything together with the help of family, friends and lots of therapy! Thanks for sharing stevie, love u ❤
EDSer here!! LDN absolutely changed my life. pain decreased by like 80% for the entire time it’s in my system. magical magical drug and finding the right provider who will prescribe it is difficult but absolutely worth the effort
I got tested for POTS yesterday, and my cardiologist told me that I almost met the diagnostic criteria but I was just slightly too low during the test so he wouldn't clinically diagnose me. Ugh. I wanted the diagnosis for government forms to go along with all my other chronic illnesses.
I likely have H-EDS (I’m on a 6 month wait list for a specialized clinic for diagnosis), and it’s really awesome to see you and others start talking about it more! It’s given me the courage to continue to stand up for myself and pursue medical care
YES to all of this. I was lucky in that my mum was a real fighter on my behalf and took me to doctors, but then those doctors all did the "it's normal" thing, trying to convince her I was fine because they didn't understand. And she was like "um no, my 7 year old having the hip pain of my great grandmother and being unable to walk sometimes because of her joints seizing is most definitely not "just growing pains probably".
Fellow zebra here. Dx came at 44 though symptoms started around 13( puberty) I noticed my daughter started having issues post puberty and took her back to genetics dr she saw when young. Got a dx like we were being told we had a cold. No big deal. Followed up with invantea test to be sure not veds. I'd been looking for answers my whole adult life. My daughter has constant subluxations, slipping ribs etc I don't. I have gastroparesis malabsorption & neuro problems she does not. Both have wide spread pain fatigue orthostatic intolerance brain fog etc. Each case is different & the lack of awareness & care is horrible
Almost certain I have this. I've been trying to get diagnosed for 5 years with this specific disorder, and trying to get doctor's to acknowledge I even have pain in my body at all for much longer.
They've done countless blood tests, feeling my joints, referring me to physio, radiography, ect but to no avail. For years they've told me "it's because you're overweight" which ⚠️TW: caused disordered eating where my weight plummeted⚠️. Still telling me it's because I don't exercise enough (I am very active though) or I'm overweight (by the new nhs measuring method, I'm actually healthy) . I want to scream at the doctor's everytime I'm there because those are not reasons to be in severe pain all the time. I have a chronic mental health disorder and a rare autoimmune disorder, so it wouldn't be surprising at all if I had this too. Sorry for the vent, felt like this is a safe space to express the frustration I'm going through. Thank you for posting this video 🖤
I to got the gift of a classical EDS diagnosis for Eds awareness month. I also was sure my symptoms counted as “ mild” until the rheumatologist started gasping at my “party tricks” and ranting about how no one had said anything to me about it before now because it’s “ extremely obvious”… so that’s fun.
I have a friend whose daughter was diagnosed with EDS thanks to you and Jessica. All her symptoms lined up with what you all talk about so I suggested to her mom, who was so frustrated trying to get her 15 year old a diagnosis to watch you alls videos where you talk about EDS. She pushed and got the genetic test. Turns out both her daughters have it one worse than the other. Thanks for putting it out there.
I am 900% sure I have this, but doctors are like no you’re fine. Ugh.
I'm officially diagnosed with Hypermobility Spectrum Disorder but I'm pretty sure it's hEDS. I'm always on the look out for new supplements. I swear by zinc and magnesium! I take about 800mg magnesium at night and have epsom salt baths. I've recently started Maca. I've seen some positives with energy levels but it's early days. I also take a high dose vit B complex, d3 and omega 3 6 9. Will be checking out LDN!
Thank you for the tips! How are you now?
It's like all the jokes that were left out of previous videos have all been collected and dumped into this one 😂😂
OR
Tryna have as much humor throughout a q&a on a not so fun topic
Thanks for making this, Stevie!
Stevie I have watched you for years and have hEDS THANK YOU FOR USING YOUR PLATFORM
i first heard about EDS through your youtube back in 2018, and now im a fellow zebra diagnosed with POTS & hEDS
You were the first person I ever heard of with EDS
I'm an EDS'er I've been vitamin d deficient since birth, so when I take it it helps, but what's really been a lifesaver has been magnesium, when I started taking it, my headaches went from several times a week to a headache/migraine a few times a month, if that. Highly recommend.
Stevie is a queen.
I have had Trigemimal Neuralgia for many years. I've seen several neurogists but none of them ever gave me a cause. Then I got diagnosed with hEDS and I did the research myself and low and behold there is a link between hEDS and Trigeminal Neuralia. Yet these professionals couldn't figure it out?
As someone from Jersey that was hands down THE BEST ad transition I’ve ever seen LMAO
I recommend Cymbalta for the joint pain. Almost everyone I’ve recommended it to texts me a month later with like five paragraphs of thanks. Different medications affects everyone’s bodies differently but Highly recommend asking your doctor about it
As a way of explaining EDS to people I tell them that I have issues with my Tissues or that I am a house under construction and I was built with crappy materials. I have the Classical subtype. Waging your energy is what I have to do, Do I want to go out to eat lunch with my family and then go to work that night and have less energy to do my job or do I want to stay home and save my energy for my work shift. Ugh, I hate when people gaslight my friends who have EDS, they just plain act stupid when I tell them I have it. Which is annoying! Because they are in the job market for helping people feel better and find out what is going on with their bodies. I tell people that about “ why the Zebra “. I’m in a community that is supportive of Dazzlers.
I swear the more I learn about EDS the more I think I have it.. either instead of or on top of fibromyalgia...
Stevie I love you so much you're such a beautiful amazing sweet person your positivity through your disability is very inspiring you're an inspiration to us all stay safe 💙
Better help is a scam. They don't check therapist qualifications. They sell customer data. They are a highly unethical company. I got scammed by one of their therapists who gave me less than half of the access I was promised
Oh goodness, thank goodness I didn't end up using that service after all.
I am sorry that happened
I was diagnosed with EDS but no one talked to me about the diagnosis. I just saw it on my online health chart as a diagnosis.
Ughhhhhh. This happened to me with a serious cervical spine issue! I saw it on my medical record FOUR YEARS later!
I was diagnosed when I was 66. My daughter who is now 38 was diagnosed which intern lead me to mine.
Hoping for an official diagnosis soon. 🤞
I have HEDS and started taking ldn and omg. First energy wise I havent been able to do this much in a day in absolutely years! I was basically in bed rest around 9 hours a day... and now I got a freaking dog! My joint pain is still strong but in certain joints there is definitely a difference.basically I personally really recommend it.
Omg wow! Thanks so much for commenting this is really promising news! ❤️
I take MSM and vitamin D and I have found it's caused a complete 180 in my physical as well as my mental health! I always have suspected I have a connective tissue disorder but have always been laughed off when pursuing any diagnosis, interesting that the same things that help you have helped me
I didn’t even know this existed had to Google it scary stuff!! Very inspiring you a top women
Greetings from the pleasant farmland and quaint villages of central New Jersey! I live next to two farms, and can get farmer's market things from them every day of the week! :D
Actually, fun fact, everyone's height changes throughout the day or over the course of a longer period. It depends on things like how much you sleeps or exercice you've done. We can loose several inches within a day
I hate that most diseases of chronic pain have no solution. We begin looking for ways to help our individual bodys without having answers from the medical world ... it's tiring. Especially when in cases like mine the specialists claim there is a problem, but do not know what it is exactly and what name / category to give it. I just want valid solutions for my pain...that's all i ask for.
***I have chronic pelvic pain. Maybe endometriosis but there is not enough evidence for that either...
Will you please make a video about how you got on disability? I’m in the process and terrified of being denied.
I’ve never applied for or been on disability, sorry!
My good friend also has this
Not many humans have it. I saw the fishermans chair tou use sometimes - Ill have to seek one out for her.
Oh! I didn't know about the local anesthesia tidbit, I just got used to asking for more.
Thanks for the awesome video! So I do have a question! I don’t know when, if ever, you’ll see this. I’m from the US and the medical gas lighting you mentioned it real. I’m in my mid 30s and I am hypermobile af, have pots, mast cell issues, vitamin deficiencies left and right, joint pain and instability, heart arrhythmias, seizures at night on occasion… just so much that I manage and roll with.
To this day, I get conflicting answers from doctors. I meet all hEDS criteria minus one thing in this long list. So the genetic counselor says oh, you probably have HSD. The geneticist when she comes in minutes later says, oh I don’t diagnose HSD. So my primary care and everyone “treat me as though I have EDS or HSD” but my doctor says it isn’t necessary to diagnose me.
I’ve been living with the same issues since high school, they’re just getting worse.
WTF? So my diagnosis? I don’t have one other than a long list of other conditions and stuff.
My question: are doctors in the UK any different? Any more supportive? I’d love to know bc the reality is, they admit I fall well into the HSD category yet don’t feel it’s necessary I have a formal diagnosis. It makes it difficult when I go to a new specialist, like why you got so many problems, lady? 😂
as someone with a sort of up in the air diagnosis (probably cleds, but the only way to confirm is an out of pocket blood test and no thanks), maybe this isn’t what you want to hear, but the exact diagnosis doesn’t really matter. there is no treatment for any type of EDS or HSD. there is only symptom management. that doesn’t change whether you’re officially diagnosed or not. if you’re in pain, you treat the pain. if you’re having heart problems, you treat those. whether you can tie it all up in a neat bow really doesn’t matter because it won’t open up any new treatment options that you wouldn’t have without it. it’s not the doctors being unsupportive (although sometimes they are in other ways), it’s them just trying not to continue to spend resources to seek an answer that might be impossible to find and won’t give you any new information or help.
This was so interesting and you totally enjoyed this video a lot and I think you’re hilarious and you explain this so well and thank you so much for doing this video.
I took LDN and it helped a lot.
Thank you for this!! I always learn so much from you about so many things not just lesbian things 😂, you are amazing i love you!!
I use curcumin for pain and inflamation and nerve pain.
And cannabis for sleep, seizures and pain
And charcoal for my digestive issues now - we think high histamine I was on cyclizine and my body turned on it.
Medical gaslighting really is a thing. I have stories. I've had meltdowns. Finally found a primary care that listens, intently, asks questions, orders tests and scans. It's like a miracle. Only it's finally having decent health insurance in the US.
STEVIE THE QUEENIE💗💗💗
Thank you so much, Stevie🙏 I learned a lot here. I sincerely hope that more research is done and that you find more things to ease the pain. ❤️. Happy Pride month to you and Josie. 🥰🌈🌈🌈🌈🌈
They diagnosed me with joint hyper mobility instead of EDS.. my joints dislocate and sublux so badly that i was in a wheelchair for 3 years straight and got out of it recently now im back in. Im an 8 or 9 on the beighton score test. They say i dont need a wheelchair for my condition like people with EDS when i literally can't walk because my body falls apart when i stand.
Turmeric can lower your blood pressure. I don't know if you have orthostatic hypotension along with your POTS, but you may want to watch out for that.
Rarely comment but I thought my phone was glitching when your head was empty 😂
😂😂😂
Stevie: "I could make a whole video about it."
When is that video coming out?
An absolute queen❤️❤️
I have a chronic health condition and my mental is waaayyy off
Have you ever been on Ashley Gavin’s podcast?? I think she has EDS too
I'm currently in the process of getting a diagnosis and it's going about as well as can be expected. At least I haven't gotten any fatshaming or "you shouldn't be using a wheelchair" this time round. I basically got prodded a bit, got pronounced hypermobile (which my gp already did just from me fidgeting with my hands lol) and got sent off for bloodwork. Had the appointment to discuss the results yesterday, nothing showed up. Shocker. So now I'm getting sent on to a rehabilitation doctor or something. Basically got told that no diagnosis is a good thing. No it's not, I need a diagnosis for benefits (or at least for a re-evaluation, because currently it's based on just my autism and adhd and they keep pressuring me to work) and accessible housing 😮💨
On a positive note, my mom suddenly suggested I'd look at the dutch eds foundation and they have so much info about it I didn't know yet and found even more symptoms and co-morbidities that match.
Got two wisdom teeth removed on one side and the pain that has lasted the longest is because my jaw subluxated on the side they were working on. I don't recommend yawning with a mask on with a funky jaw.
I have Marfan's and it has similar characteristics. Connective tissue disorder.
Hi hi. I know my username is silly but plz ignore for this comment. I'm in gradschool to become a clinician of prosthetics and orthotics, and I got assigned EDS type 3 for my clinical science presentation. I knew as soon as I got assigned this that I'd pull your videos up. Hope it's cool that I'm referencing you for my projectttttt
Great video.
I summarize my condition for people as: "connect tissue issues"
A New Jersey dig into a mental health plug!!! YOU ARE A GOD!
Vitamin D is converted to D3 in the body but with some people the body can’t convert vitamin D to D3. I would recommend trying D3.
Oh I’m definitely taking D3. Are there people that take a different type of D? What for? 🧐
@@stevie Morning. Most people take vitamin D but there there is also vitamin D1, D2, D3, D4 and D5. The most 2 important form of Vitamin D are D2 and D3 - Ergocalciferol (Vitamin D2) Cholecalciferol (Vitamin D3). Most Vitamin D supplements are made using D2 or D3.
@@stevie some people take vitamin d2 because most vitamin d3 is not vegan, it comes from wool. there is now a vegan source of vitamin d3 and it’s becoming more accessible but d2 is still easier to find for many.
Great video but I wish literally a third of it wasn’t advertisement :/
Chronic illness sucks.. I suffer from chronic migraines and it's not fun. The last migraine I had was only 4 days long.. would not recommend
the thing that helped with my bone/nerve pain is duloxetine!
f for chauncey
Funny because in France, we call ourselves Zebras when we have high IQ because they're not as common as horses and because their pattern make them unnoticeable and symbolize the "scratches" that life events inflicted upon us by being badly treated because of our differences. This actually fits EDS a lot too ! And since I have both I guess I'm part of two "dazzle" now haha
Not the best thing too have, hope you can find something that helps for real, got worn out muscles (cant find a English term for it ) but i have muscle pain for 24 hours in my hands and sometimes in the rest of the available muscles legs back and neck, they can do nothing about it, ye have too live with it they say, well thanx pfft
Meeting? 12 step?
The roasting of The Matrix reboot
Both ed's and pots very prevalent in the autistic community, (also ADHD) have you considered autistic diagnosis (?) Thanks for this video I enjoy listening to you talk about all things. Sending spoons?
yeah i take MSM and it does help a bit.
Hey beautiful EDS is awful lost my love to veds last May ironically hopefully England/Europe Tele-hugs and prayers
How is Chauncey so cute? The world must know.
i love you
💋💋💋
Ahahahahahhahaha not the Ad segue that was FUNNY
The Matrix slander 🥺
u think eds is contagious?
Nope
Same, i still haven't seen the remake of matrix either hahaha...Meow
Do you can't do workout? Do you have accelerated heartbeat? Ah... ok you have muscle pain.
This is random but i think Billie Eilish might have this. She can put a freakin guitar head in her mouth, contorts her body easily without needing a warm up and constantly gets injured just by jumping while performing
a LOT of people are flexible or hypermobile without having EDS. i really wish we as a society could agree to stop trying to diagnose strangers.
I love u too😭
WTF! I follow you and have the bell on to be notified for all your uploads and this didn’t come up on my feed! I hate YoutTube!
🧐🧐🧐
💙
Damn you’re a beautiful woman!
14:43
Hope your symptoms remain tolerable if not get better!
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😍❣️
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