Welcome to the World of EDS: Tips & Tricks for the Newly Diagnosed

In this webinar, from August 15, 2018, Patient Advocate Maggie Buckley will walk you through the basics of navigating Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Much more information about Ehlers-Danlos syndromes and hypermobility spectrum disorders is available at ehlers-danlos.com. A transcript is available bit.ly/2Nfao7o
Link to medical sheet:
paincommunity.o...
Resources links:
American Chronic Pain Association theacpa.org/Su...
Self Management Resources Center www.selfmanage...
Ehlers-Danlos Society www.ehlers-dan...
The Pain Community www.PainCommun...

[@glamcat7948]

I was diagnosed today. Actually, my own diagnosis was confirmed by a geneticist today. My primary care doctor has been largely blowing me off for the past 10 years, so I dug around, researched my symptoms on my own, and came up with a layman's self-diagnosis of EDS with MCAS; which are exactly what I was formally diagnosed with today. #BeYourOwnAdvocate

[@badeds100]

What’s MCAS?

[@willtell6263]

Mast Cell Activation Syndrome

[@heavylight7091]

Same thing happened with me. Thank Zeus for the internet.

[@SobrietyandSolace]

I am in the process of trying to get a geneticist to confirm. The problem is doctors have shrugged their shoulders for 15+ years already and a private doctor took my money and ran…I’ve heard nothing from them in weeks when they were meant to write referral letters. The appointment cost as much as my rent!

[@shannongreenwell1278]

My Neurologist was the one who diagnosed me with EDS, Classical type. I doubt my PCP would have a clue what it is. I’m also Epileptic and every time I go to my GP he’s always asking me if I had a seizure no matter what is going on with me. My Epilepsy isn’t a symptom of my EDS( that I am aware of).

[@stalez5250]

I'm crying and crying. I am used to medical gaslighting all day long. I never heard someone talking so respectfully about a patient group. I am married and my wife is the best although she is sick too. I'm stuck at home and the two of us are all alone. No friends, hardly any family. I never cry when watching KZbin. This is like the second maybe third time since the start of KZbin ... But I think this is that sparkle of hope inside me, I needed for years. Thank you all so much

[@jefferyashmore6477]

I know how you feel , you have sympathy. I am 58 and totally disabled and cant work. I will pray for you both.

[@paolakirkland5008]

If u need some one to talk I'm here I know how lonely this can be

[@melissafarrugia9531]

Hugely hugs of strength to You and Your Wife through all of these trials may you find much comfort and community of support network for advice and encouragement.

[@jiltedlittle6868]

Hearing your introduction to people who have EDS was like a clear breath of fresh air after being stuck inside a gas chamber. It had me in tears because it was the first time I've heard anyone describe this condition to be anything other than bad. I really hate to be a downer, but it's true. Most of the cases I see online present differently or much worse than mine does. So it's just been this impending sense of dread everytime I learn about another piece of this that I haven't yet encountered: I would just sit there wondering how much time I have left. I've been desperately searching for a bright side - even after I stopped believing it was still there. What you said made me feel like I wasn't so alone in this anymore. We are more than just joints, muscles, and tissue waiting to fall apart. We are unique, special *real* people who have so much to offer each other as well as the rest of this world. Thank you.

[@acovenofmany333]

Newly diagnosed. My 16.5 year old was diagnosed first. My sister has it, too. My sister and I are thankful. We always knew there was something wrong. We weren’t hypochondriacs. We feel good that our kiddo (my sis co-parents w me) will get the help she needs now vs 38 years from now.

[@charlottestandage2765]

Thank you so much for this talk. I was officially diagnosed earlier this year. My identical twin sister was diagnosed with hEDS in 2014. The doctors didn't believe me that my twin sister was diagnosed and so I took copies of her letters from Dr Mathias and Prof Graham and took them with me to the hypermobility clinic where I was then diagnosed. The rheumatologist I saw in the NHS didn't even bother to examine me and simply said I wasn't hypermobile. I am now thankfully having physio and beginning to see improvement. I'm just so grateful for the ehlers danlos society and the wonderful doctors and physios at the hypermobility clinic in London.

[@whalewoman813]

I'm finally diagnosed at age 65. Everything I've struggled with my entire life is now explained. I'm disappointed that no Drs or PTs I've seen noticed my symptoms as a whole until my most recent Ortho doc asked if I had EDS. I wish I hadn't pushed myself so hard physically because now I'm worn down with arthritis. Symptoms have just escalated so quickly since I've been caregiving

[@MsMesem]

Disappointed?!!! I'm angry as no one came close to any sort of even desire to work out what was wrong with me! I knew I had hyperlaxity since years and explained this to innumerable doctors and therapists who ignored me and went on to hurt me... badly. F them all!

[@juliiaflower]

I like her approach of supporting the whole person, rather than just the physical elements

[@jeannemarie3704]

I am 53. Finally got my diagnosis today.

[@concertmasterntl]

Oh god, shoes with support are the most painful thing in the world, as are orthotics. Barefoot is the only tolerable way, but even that hurts.

[@smith4735]

YES. Barefoot or Xero shoes changed my life and constant knee pain (at least while walking). I still have knee braces, etc but being in full contact with the floor also HUGELY improved my propreoception. I was hitting my head all the time (small brain bleeds even from head slams repeatedly into the roof of the inside of the refrigerator, etc! Now I haven’t hit my head in a long time. I still run into doors, etc but being fully in contact with the floor has improved my gate, my spinal alignment, my sense of balance, my sense of where I am in space. Not perfect but way better🎉

[@TheTetheredButterfly80]

Yes! My 9-year-old refuses all shoes and most definitely his orthotics!

[@loganskiwyse7823]

Just found this video. Found out just over year ago I am a candidate for hEDS or HSD. It is IMPOSSIBLE to get medical professionals to listen to me. At 54 (now), they just write it off as arthritis. Funny thing is, first serious symptoms I had showed up when I was 19, and then the doctor's response was (your too young for arthritis, it must be in your head). Where I was sent to a shrink that was equally ignorant. Between them they decided I was actually suffering from schizophrenia, indicated this on my air force discharge papers. I knew that was wrong (Autism, ADHD is what we have since proven. But just to give everyone a idea of how messed up things can get, when I requested replacement discharge papers ALL the medical references where removed including all my medical visits during my enlistment and the discharge had been changed to poor conduct. I was never disciplined on conduct my entire time in the Air Force. The hardest part, my Autism is in the Asperger range. Meaning I am much smarter then the average person and unlike most with this condition I am not limited on a specific field of interest but bounce from several advanced fields of science. (point of fact, I can't do names, dates, face recognition or english(spelling) well. So most of the time I am smarter then the doctor (without the specialized education !!), so when their bias kicks in I walk out. No tolerance for ignorance within the medical field with decades of failures on their part to get things right.

[@RaquelSantos-hj1mq]

That's awful. My son was just diagnosed with autism and ADHD. I can't imagine him suffering with chronic pain as well. Does this video mention that ASD, ADHD, and EDS are linked?

[@franzpeters3824]

@@RaquelSantos-hj1mq No, EDS has nothing to do with it, but it can nevertheless also occur.

[@crystald3655]

Another youtuber did a survey and a large number of people with EDS are also on the autism spectrum.

[@crystald3655]

I'm 33 and my pain exhaustion and digestive issues dizziness and near fainting and a few other things like allergic reactions have been chalked up to anxiety and depression and me not exercising enough when I can feel my joints and bones sliding around. My only choices are to live in pain without treatment of any kind or even reconition of what's actually wrong or try to get treatment and have doctors try and force anxiety and depression meds on me which do more harm than good or die.

[@franzpeters3824]

@@crystald3655 Not really there is no genetic connection.

[@aqualungs77]

Thank you for this💜 I’m 42 and just diagnosed with HEDS. I always put my shirts on inside out lol

[@drewdavis3638]

27m here. Same!!!! So many little things I’ve done began to add up. Unbelievable

[@juliebarry7393]

Lol saaaame! I heard that and was like 😮

[@Rain_Reign]

I was just diagnosed, 1 week before my 42nd birthday 🎂 I hope you’re doing well ♥️

[@aqualungs77]

@@Rain_Reign wow already 2 years. Doing OK, was also diagnosed with psoriatic arthritis. And then Autism this year. Last 3 years has been a ride

[@escenaendo]

Not diagnosed yet, although after so many comorbidities I know what comes next, and it'll be EDS type III among dysautonomia and POTS (which are quite new for me, the diagnoses not the symptoms). Yet, waiting for someone to tell me how should I manage my finances. After achieving college, a second language proficiency, and a few other small achievements, I keep losing myself under a pile of diagnoses and nobody seems to know whats actually happening beyond symptoms, and nobody seems to say nothing beyond do this or that. Impossible for many many many of us to work, so impossible to get money, so impossible to live these days. Sorry, losing language too due to extreme fatigue, but you know what I mean. I have a neurologist, a gynecologist, a rheumatologist, a general doctor, an urologist.... None of them. Sounds familiar?

[@sharonjohannaelschot1685]

Does all these things that you "have to do" feel overwhelming to anyone? I also have ADHD and my own.hoise, house hold jobs and my own company, lack of energy and trying to manage life..and it feels a bit too much to do all these extra things that Ehlers-Danlos are asking me. I know I have no choice but I am wondering if it's overwhelming to some of you too?

[@karenpawson-smith2975]

Absolutely- all the time. The most overwhelming thing for me is dealing with doctors, who need to be educated better about our disorder. This video makes it sound like its so easy to find a Primary Care Physician who will listen, and that is just not the case. Some will discriminate against us and say they have no room for us in their practice (in order to not have to deal with EDS), others will make up crap, and I have had none that actually LISTEN. Plus there is a 6 month wait just to see primary care physicians in the major city that I live in (Austin), and the medical practice I belong to won't make sooner appointments for you if you have a "chronic condition." I feel like it is wasting time to put the onus on us individuals who have EDS when it is our society and especially doctors who need to be given the 'list of things to do.' Doctors know we have a lower standard of living, and they don't feel that we are worth living.

[@whalewoman813]

Yes, I get overwhelmed

[@joannalawrance5138]

​@@whalewoman813feel just the same

[@shelaghendres]

Just realised I have hEDS. Feel totally overwhelmed. With a rural NHS l feel I have no chance of help or understanding.

[@breemorrison901]

Not as overwhelming as the years I spent being gaslit by some doctors and sent away with no answers before a doctor to diagnose me. ☺️

[@sharonjohannaelschot1685]

Did anyone here got diagnosed with fybromyalgia, raynauld syndrome, hypermobility, asthma, before they found out its actually Ehlers-Danlos syndromes?

[@erinpitten7644]

We’ve found EDS runs in my family and my mother before knowing this and getting diagnosed had previously been diagnosed with fibromyalgia, hyper mobility and asthma too

[@jefferyashmore6477]

Yes and much more.

[@sharonjohannaelschot1685]

@@jefferyashmore6477 like what?

[@jefferyashmore6477]

@@sharonjohannaelschot1685 yes to all above and tachycardia, problems regulating temptress. Testing of muscles and joints nerve entrapment, hives from bee stings multiple allergies causing hives.

[@23stacysteele]

Diagnosed at 47 its been a difficult road with doctors. No diagnosis to doctors meant I was just drug seeking and no help was ever given.

[@heatherjoyce-stevens8653]

How did you get diagnosed at 47? I'm 47 now and was diagnosed with "loose joints" at 5 after I stopped walking briefly. I have had so many issues that seemed not to connect over the years, it's finally making sense.

[@23stacysteele]

@@heatherjoyce-stevens8653 my parents did follow up with doctors. They thought it was growing pains and I would grow out of it. But it only has gotten worse. I apparently have seen a lot of stupid doctors over the years. I've seen 6 differrent neurologist, 7 family doctors, 1 holistic ND, 1 asshole of a 2 pain doctors and 2 geneticist to finally get diagnosed just last month. I'm not as flexible as an adult as I was as a kid, but still very flexible.

[@reginageorge72]

omg, thats my story, doctors just assume your pain med shopping, im tired of feeling embarressed to ask for pain meds. Ive tried to get off with some success but there are days i just cant do without a strong pain med. Im looking forward to not being made to feel like a drug addict. i feel you honey

[@laurakurtz6072]

Yes, gaslighting and refusing to believe has been my experience too. I did my own research

[@sbro17]

I’m 29 and finally received my diagnosis yesterday, the specialist then confirmed it’s the reason for all of my chronic ailments. While I’m always in a constant state of pain somewhere in my body, I’ve just grown to live with them as though it was normal. Nothing has changed physically since yesterday, only a diagnosis, however after reading up on EDS and it’s permanent and debilitating components that need constant attention and will never get better…I am now asking myself what the point of going on is, why bother living any longer like this, it won’t get better and I’ll always be walking on eggshell joints, but not for long because my feet can’t handle prolonged standing, my jaw always hurts, my neck and back are always seizing up in pain…why bother what is the point? I understand that I’m in a doom and gloom phase post recent diagnosis, but there is an honest question that I ask myself because I’m trying to find some kind of hope to actually go on and tackle this. Everything suddenly seems bleak now and it’s a horrible feeling.

[@armyBoi17]

I am in the process of getting diagnosed but it’s pretty clear it’s h-EDS. I absolutely understand how you are feeling.

[@brianmathews5358]

I feel the exact same way

[@Rae-qf7xv]

NHS UK 😂 insists it's fibromyalgia. It's obviously not but no one listens.

[@happymonday77]

You will have better days, I promise. I suggest making a life that is easy to manage and sustainable. This will relieve so much stress

[@Rae-qf7xv]

Feeling exactly the same. Add in no money, below standard healthcare and you can see where the despair comes from. Sitting here now in the UK it's freezing winter night and I can honestly say I've never felt so low. I feel like I'm letting down my little dog because I can't give him the attention he deserves and no amount of positive thinking will make this better, a lotto win might but I don't see that happening.

[@SnowySpiritRuby]

I've had a dislocated rib at my spine - very painful and felt like a pinpoint spasming knot that I desperately wanted, and tried, to stretch out (I forget what level in the spine it was, but I think the way my spine curves *_(not_* scoliosis, just to be clear) due to compensation for injuries lower down - it bends away from the side that dislocated right around where it dislocated - was one predisposing factor, that and my generalized joint hypermobility (hypermobility that's not currently diagnosed as anything yet, but is likely hEDS, or at least G-HSD)) yet none of the stretching I did actually did anything, and using/reaching my arm on the affected side hurt a lot, as did breathing. For the first few days, I thought it was just a strained muscle or something because of what I had been doing when it happened, but it didn't get better at all so I started to suspect something more was going on. It was out for an entire week and my PT had to put it back in, but even he didn't entirely realize what it was until he saw the certain way I was repeatedly trying to stretch it after every single rep of an exercise, which then sent up red flags for him. Thankfully it hasn't happened since then, but that was a miserable 7 days.

[@badeds100]

I have the same thing occasionally. It hurts so much when I breathe! I saw a Chiropractor it helped. Hope you have relief.

[@SnowySpiritRuby]

@@badeds100 That was a year and a half ago, and thankfully once it was back in, it (as of yet) has never come back out. Every once in a while it gets to where it feels like it wants to come out, but thus far it hasn't yet.

[@roger-cyndywilber2759]

This seems to run in my family but no one has ever been "professionally diagnosed". Where do we start? What type of doctor to contact?

[@TheEhlersDanlosSociety]

Any doctor who can diagnose a disease has the power to diagnose EDS if they choose (for more look at ehlers-danlos.com/eds-diagnostics). However, most people wind up at a geneticist's office because EDS can be inherited, and geneticists are most adept at distinguishing among various genetic disorders as well as in doing any genetic testing necessary. Diagnosis starts with a physical examination. An exam for diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) probably will include testing skin for what it feels like, how much it stretches; the Beighton Score ehlers-danlos.com/assessing-joint-hypermobility/; taking a look at one's medical history to figure out what EDS symptoms may shown in the past and whether EDS was inherited (which helps diagnosis). It might also include an echocardiogram if heart or vascular issues are suspected, or other tests depending on the symptoms and doctor. Diagnosis of type comes by finding the EDS type that most matches one’s symptoms. The process is relatively straightforward. Match your signs and symptoms to the major and minor criteria, and identify the type that is the most complete fit. For all but hypermobile EDS (hEDS), a provisional EDS diagnosis can be made from clinical symptoms; a confirmed diagnosis calls for genetic testing. hEDS doesn’t have an identified cause yet, so diagnosis remains completely based in matching the criteria, as do the hypermobility spectrum disorders (HSD).

[@Wherewordsend]

this was so comforting, thank you for this.

[@AJ-lm5rh]

They are looking for the next place to sit down😂

[@elinevdw2331]

4:20 : "they are known for wearing their clothes inside out :') "... lol ( I think it's funny 'cause I can relate to this ;)

[@totabo6aa]

ive done this all my life. why do we do this? does anyone know? its always puzzled my friends and family. but i dont even realise i do it. they always let me know my clothes are inside out.

[@princeloup5093]

@@totabo6aa it s stiching of the clothes, inside the clothes that irritate the skins, at least for me it s that.

[@jutta3378]

@@totabo6aa Labels inside clothes are super scratchy! And so are the seams at the front of socks...I could go on but it seems that you instinctively solved the problem of annoying stitching and labels!

[@ananeves7786]

I have the síndrome, in this moment I have many problems. Same times is difficult live with this.

[@carolineco]

Did anyone without any medical science or physiology training able to truly understand "Gray's Anatomy" ? That suggestion was a surprise to me.

[@Fuphyter]

I am 67 and was diagnosed this year. I need both shoulders and my other knee replaced. I was sick my whole life. I'm in horrible pain constantly. My skin feels like it's on fire. Spine and joints shot. I want to get replacements done but am too weak. My rotator cuff is almost gone, clavicles blown and large spurs everywhere. My body creates bone spurs and degenerates my joints and spine.

[@rukhsanabeagumbeagum3768]

My daughter has EDS I m from Pakistan. Here people know nothing about it. What should I do. Where to go to get help?

[@duasarfraz1810]

From where was she diagnosed?

[@MuhammadAhmad-eh1db]

I am in Pakistan, have EDS, muscle relexant tablet Neubrol has helped me a bit. Taking omega 3, and vitamin C has also been useful. Most of the time you have to research yourself as doctors here know little about this. A good pain management doctor can also offer some assistance

[@misterbulger]

Do you HAVE to have hyper mobile joints? I just have overall unstable joints but not due to lack of muscle. I've needed ankle, hip and shoulder reconstruction. And they got me hooked on pain meds for my back when I was 13 because they didnt know what else to do for me. They wanted to fuse it, but I dont even recall a particular injury. I've been suffering for the last 22 years with no answers beyond more surgeries that "might" help. When I was young I would tell my mom that I fell and hurt myself so she would take my seemingly random pain seriously. School and work were always hell having to sit in their crappy chairs being told when I'm allowed to stand up. I'd get punished for not sitting still because I was always wiggling around very uncomfortable.

[@TheEhlersDanlosSociety]

Do contact our dedicated helpline team who can advise on this and addressing this with your doctors in the most effective way: www.ehlers-danlos.com/eds-helpline/

[@jefferyashmore6477]

I have heds and mast cell like you been operated on all my limbs and need more operations plus I have tore muscles forever. They called growing pains as a kid, I would cry and still do from pain. Took Tylenol 3 and vicodin as needed for 30 to keep working and destroyed myself. Never got hooked on anything because only took when couldn't take it anymore. They shut me off vicodin for extreme break through pain and cut down on Tylenol 3. I was at point of suicide when finally got diagnosed then they gave me more Tylenol 3. I am 58 live in pain daily, I am disabled.y prayers for you, you are not alone.

[@jlbeeen]

This reveals just how terrible the healthcare system is where I am... My GP only allows a maximum of 15 minutes per appointment, doesn't look at my records or notes beforehand unless I send an email to the secretary and they make her read it, and she doesn't believe POTS is a thing? With POTS, ADHD, allergies, it's a lot to deal with as well as my hypermobility and lower GI issues. Plus, she looks at me funny when I say I did my own research on stuff, because sometimes she doesn't know what I'm talking about, especially if it's a small study. It's hard to have to explain everything and why I think my treatment should include, or not include something, when she doesn't like anything off label, or not FDA approved. I can't get a new doctor without going on a 5 year wait list, so it sucks... I'm at a chronic illness special clinic, but it's only temporary. It just feels like my GP isn't putting much into stuff, so I've had not choice but to go to other places, like evidence based naturopathic clinics who actually do research as the appointments are longer, physio, and university advisors. It's just a lot, and hard to find any support. At least some things are on the right track.

[@karenpawson-smith2975]

I wrote this as a response to someone above, and I am repeating it here because I agree with you and I'm so sorry you're having to deal with this. The most overwhelming thing for me is dealing with doctors, who need to be educated better about our disorder. This video makes it sound like its so easy to find a Primary Care Physician who will listen, and that is just not the case. Some will discriminate against us and say they have no room for us in their practice (in order to not have to deal with EDS), others will make up crap, and I have had none that actually LISTEN. Plus there is a 6 month wait just to see primary care physicians in the major city that I live in (Austin), and the medical practice I belong to won't make sooner appointments for you if you have a "chronic condition." I feel like it is wasting time to put the onus on us individuals who have EDS when it is our society and especially doctors who need to be given the 'list of things to do.' Doctors know we have a lower standard of living, and they don't feel that we are worth living.

[@beanoneya]

This was great. Thank you so much.

[@J.DaviesArt]

I've had it all my life , one gp said some people have more collagen between ligaments and that was it. No diagnosis, completely ignored and repeatedly told I was to young to suffer with back pain ... now 35 ... am I old enough to be listened to now it's worse?

[@TeamRockHit4]

I do need to disagree I'll need a gynaecologist at any point on my journey ;) Other than that a very interesting and informative presentation.

[@cassykellogg3216]

I have concerns that my daughter has eds. The doctor says she doesnt because her arms are not longer than her height. But she hits all the symptoms?

[@jesseballard5741]

Cassy Kellogg hmm, sounds like your child’s doctor may be confused. The long arm span she’s talking about makes me think she’s referring to Marfan Syndrome. It is pretty similar to EDS in many aspects, however, it is still a different disease much like Loeys-Dietz Syndrome. Did the doctor use the Beighton Scale as part of the assessment? I would talk to him/her more about it or find a different one if your not satisfied. I’m still surprised at how many people in the medical profession are unaware of its existence, but at the same time it is a rare disease. Good luck 👍🏼

[@franzpeters3824]

@@jesseballard5741 Yes, Marfan is connected with lenght, but EDS isn't. There are many short people who have EDS.

[@indecisivebuilder]

Second opinion

[@athenacaputo]

Marfanoid Habitus is probably what they're reffering to. It's not a requirement to be diagnosed with EDS, just some people with EDS happen to have it and some types, like the musculocontractural type, are more likely to have it.

[@Dulcimerist]

I also had a clueless doctor like that who screened me for Marfan instead of EDS, which delayed my EDS diagnosis by 17 years. Get a second opinion, and bring the actual diagnostic criteria with you: www.ehlers-danlos.com/heds-diagnostic-checklist/

[@jaysartori9032]

I call my EDS as Ehlers Danlos Disease. For me the pain is in my hands and joints I can't even hold a job because of this disease!? Because you need your hands for everything but its the pain that hits me that will drop me to my knees in severe agony!!!!

[@franzpeters3824]

This is so bad. I also have problems, because I am slower than average people.

[@princeloup5093]

wahoo thank you so much. I cannot believe the amount of things i learned watching this video. Thank you so so much :D

[@jul1ann3mari3]

I think there has recently been developed identification of the hyper mobile gene

[@beelady8101]

There was a study done at MUSC in Charleston, Dr Norris has completed it, now it’s in peer review. Excited they are expanding knowledge sand easier diagnosis Thru gene testing 👍🏼

[@juhaa4180]

I have a question that you might find dumb but anyways here's the best place I can ask : I have highly suspected hEDS and some things in my body seem to fall under its umbrella but one thing is weird : when I put all my bodyweight on one leg, or one hip (besides the pain part) my hip pops and sort of gets out (you can hear, see and feel it) but in 2 times like 'pop 'pop'. Is it a hip subluxation ? (cause I have a few subluxations and most of them do hurt except for the shoulders) but this one doesn't really hurt. Is it not subluxed but just hypermobile ? Should I avoid doing it ? Is it even EDS related ? Thank you for your time and attention

[@TheEhlersDanlosSociety]

Hi Juhaa, do contact our helpline team who will be able to offer their advice and support: www.ehlers-danlos.com/eds-helpline/

[@beelady8101]

Stop doing it. I can do it too, did not hurt when I was young, but now I’m paying with pain daily. Do not go crazy doing yoga and Pilates just because you will be super flexible to do amazing yoga poses. Those will open up your spine to problems. I’m fused in two places and still rate 7 on Beighton score. Now all the other joints are painful.

[@jefferyashmore6477]

@@beelady8101 I am same way scored 9 on scale, lots of operations and muscle tears. My heart goes out to you. You are in my prayers. 18 operations need 3 more. 30 years pain killers trying to work I am now disabled. Life is very hard.

[@schuylerjones2213]

I can't find a diagnosing Dr! I keep getting the run around between my specialist Drs. I am 61 so a but late but I know this is what I have. Family history and lots of symptoms..HELP!

[@TheEhlersDanlosSociety]

Please reach out to our helpline! www.ehlers-danlos.com/eds-helpline/

[@andethidialbubabibub3261]

53:53 first of all that explains alot.. Give me back my precious time

[@theotherside5253]

I was diagnosed in the Navy in 1989, and SHOULD have been receiving benifts and

[@nancys2839]

Just curious:what about muscles that feel ropey?

[@angieacquasanta4213]

Hi I'm a mother of three my question is about ETS hypermobility type and gastroparesis as of today my stomach is working at 8% my 20 year old daughter also has gastroparesis what do you think about a pacemaker in the stomach? I've been told I'm a candidate do you know if this could help my daughter and myself? She's under 90 lb now and I am a scared mom😢 should we try this surgery?

[@maryr7593]

Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.

[@tecnopolitolog]

Diagnosed just yesterday. Hi, EDS homies.

[@ahn0x]

What if you have no community & literally am stuck alone for multiple reasons

[@TheEhlersDanlosSociety]

please reach out to our helpline! They can provide support and resources that may help you. www.ehlers-danlos.com/eds-helpline/

[@pearlkally8325]

What specialist look after EDS? Thank you.

[@TheEhlersDanlosSociety]

Please reach out to our helpline for information and support! www.ehlers-danlos.com/eds-helpline/

[@Lionessliving]

Geneticist who specialises in EDS. If youre uk based reply and I'll provide a contact number.

[@RaquelSantos-hj1mq]

Finally an explanation of why I'm so attractive! Lol *not really*

[@alexc2265]

Ikr! XD

[@classiccouture6973]

Haha I’ve had children comment on how i “look like a teenager”. I’m 35. And my mom who’s in her 60’s still looks at least 20 years younger than she is.

[@SHARYU_NIMBBALKAR]

Tq....I am sharyu Nimbalkar I have eds ....so plz help me ....I am living in India ...tw

[@rmsmith8098]

Has anyone noticed that most of us with EDS are rather on the thin side? I wonder if that is due to gastrointestinal issues or just plain fatigue.

[@robertcrusher1972]

This isnt true

[@BilliesCraftRoom]

HSD in my case there are times when pain is so bad I can't make food or have strength to eat it, ceral is my meal of choice! When I haven't strength to make meals, or cut it minimies what I can eat

[@franzpeters3824]

@@robertcrusher1972 There are also fat fast-food eaters, because they cannot cook themselves.

[@emilyalternative9519]

I’ve been anywhere from 265 at my heaviest and 113 at my lowest and everywhere in between...

[@jlbeeen]

If there is a correlation, there's probably due to misdiagnosis, as generally larger people have reduced range of motion, and some symptoms of EDS can overlap with obesity. However, I've seen hypermobile people who are certainly not small. The only reason I was underweight was due to food intolerances setting in at the same time, and it took me a long time to find what I could actually eat. My cousin had the same thing happen as gluten intolerance runs in the family.

[@leanneschnerch9143]

I have not been formally diagnosed however i strongly believe i have EDS. I require a formal diagnosis for court. Im not sure how to accomplish this quickly. Any suggestions would be greatly appreciated. Thank you in advance

[@leanneschnerch9143]

I live in Ontario Canada

[@KaityJane1995]

I'm going to go to the GP with the diagnostic criteria printed from the eds website maybe that would be an option?

[@FixItYourselfDeb]

@Leanne Schnerch Did you get your diagnosis in time? Did you share your story of the ups and downs you experienced? All our diagnosis stories are so crazy. They are filled with the stupidity in the entire medical system. Examples I recall: Upon meeting my first rheumatologist, he read my entire 10 page "story" of how I became bedridden. I was left there with the intern whole he went to his office to read it (and possibly Google symptoms?) He raced back into the room and tried to ram my thumb to my arm. Wow, was that confusing 🤯 I'm having sleep disorders, pain, seizures,++++etc. Why is this dude trying to break my thumb!? He never told me. He just said "Fibromyalgia." 7 years later I found EDS and discovered the angle at which my thumb touched my arm and was shocked. I ran back to him to show him. He brought in every intern. They had me twist and pretzel things all over my body. No one spoke in english. There were just a lot of oooh, and ahhhhhs. Then he stands back and pronounces that "You do not have EDS." I'm like, ummmm, why? He said only circus performers who can stretch their neck skin up over their mouths have EDS. . . NEXT DOCTOR PLEASE!!!🤬 . He was referring to Gary Turner, the world's stretchiest man. Then he asked why I'd want to know if I had EDS. He got angry and said "No treatment! No cure!" Then he just walked out. I never bothered to visit him again. I suspect he believed I had it, but was telling the interns not to tell the patient simply because he believed there is no treatment and no cure, and that perhaps I would get depressed or something. It was just so weird. It took maybe 5 more doctors to finally get 2 well-known ones to both say "yup, EDS" and easily diagnosed me. One was the head of a Chicago pain clinic. The other was Alexandru Barboi the dysautonomia guru-guy.

[@robertcrusher1972]

Most people should want to and do see a Geneticist for a proper diagnosis.

[@alisonbarratt3772]

You must be seen in a genetics clinic

[@renecournoyer2582]

Can powdered collogen help EDS?

[@ZenergyHQ]

I don’t think there is a lack of dietary collagen. It is the body’s inability to assimilate the available collagen in our diet. The body is unable to use the raw materials to build strong connective tissue.

[@sainjawoof3506]

The disorder that took everything from me!

[@ToshiSalvino]

I'm only 3 minutes in and I'm already crying

[@melloyellow5598]

Excellent. Thank you. Too sick to tell you more.

[@alisonbarratt3772]

Very helpful thankyou

[@sharonjohannaelschot1685]

Really good

[@gafsabux8389]

Thanks for sharing♥️ from Gafsa bux 🦓♿🌈

[@andreawisner7358]

Don't believe that you can have chocolate. You may react to it. For example, hives on the face, shoulders and back.

[@TheEhlersDanlosSociety]

One can react to any food, depending on one's own mast cell triggers.

[@irisgreene4175]

Yes, esp with the mcas involvement.... there’s compounds in milk/dark chocolate and carob that consistently give people trouble. But white choc has this compound separated out and people have better luck with that version when trying

[@robertcrusher1972]

And triggers are not the same for all of us.

[@alisonbarratt3772]

@@TheEhlersDanlosSociety chocolate loosens an intestinal sphincter udont know its happening then one day you get heart burn then turns to GERD then turns to BARRETTS esophagus like happened to me next step is throat cancer IF i cant find a way to keep the stomach acid out of my raw throst! Eds people need to avoid mint,caffeine, chocolate, and many other things that loosen an already loose esophageal sphincter.

[@alisonbarratt3772]

@@TheEhlersDanlosSociety chocolate loosens esophageal sphincter u dont know it but it does and in time this can lead to Barretts esophagus as it has with me,my psin feels worse than death!

[@oshy2128]

:D

[@johnbladykas4454]

Sorry if the doctor is not a EDS specialist do not waste my time.if he has to goggle sorry that’s not good enough for me. Sorry I totally disagree with picking a Doctor

[@alisonbarratt3772]

There are not many drs that know about eds.if i waited for one who did i would never have had a dr.at all.wonderkng where u live where drs are so plentyful? I live in Canada.

[@jlbeeen]

My GP doesn't know what most of my conditions are. I'm in a part of Canada with a shortage, so some people don't have a choice. I often do get a second opinion through a private clinic, but my doctor thinks POTS is normal, and doubted my ADHD diagnosis I paid $2000 for, and the only way for me to switch is to go without a doctor for 3-5 years as the wait list is really long. It takes years to see specialists here too, so waiting months between appointments is even worse to deal with.

[@andethidialbubabibub3261]

Wtf.. Is this about "EdS" or "DiY get out of depression".. I learned nothing, thanks