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Any fellow Ehlers Danlos people?

Oct 23, 2014 10:46 PM

I'm 28 and have EDS type 3. Until recently, I only had lower back pain and shoulder/neck pain. I have an unusually high amount of natural muscle (I don't work out), but suddenly my body seems to be falling apart. Not just problems with one joint at a time, which I'm used to, but everything all at once.

Oct 25, 2014 9:52 PM

yes, hi!

Oct 29, 2014 4:41 AM

hello!!!! I'm new! anyone live in Cali?ok gotta go shoulder is complaining!

Oct 29, 2014 4:43 AM

have hope. I'm twenty seven and have cured some symptoms by sleeping on my back to save my shoulders and not hyper extending anything ever

Sep 12, 2016 10:34 AM

Hi! Just joined, eds- hypermobility type.

Sep 12, 2016 10:43 PM

Hi. The Drs think I have it, but can't afford the testing.
Although I am a retired contortionist, hyper-flexibility is my thing.

Sep 13, 2016 8:30 AM

Hello! I have hypermobile EDS too!

Sep 13, 2016 8:39 AM

hi I have EDS type 3 too x

Sep 13, 2016 4:18 PM

I'm thinking about trying to get tested. I think I may have hyperbole type EDS. Can I ask what tests you guys had done? And did any of you have genome sequencing? I really want to see my genome! I'm just a huge nerd/geek. πŸ€“πŸ€“

Sep 13, 2016 10:21 PM

Currently there is no genetic marker known for hyper mobile EDS and testing for the other forms are not 100% accurate. A geneticist familiar with EDS and it's manifestations is the best way to be diagnosed currently.

Sep 14, 2016 7:29 AM

I know that the genetic marker is currently undetermined but there can still be some clues in your genome, at least from what I'm aware of.
I'll see if I can get referred for testing. Thanks Ann

Sep 14, 2016 12:49 PM

Yes! I am! I've won the DNA-lottery so I have been diagnosed with EDS, hypermobility disorder, fibro and then some. Yes, I feel blessed!
I haven't been diagnosed with sarcasm, but I'm almost sure I've got that too.... πŸ˜‰

Sep 14, 2016 12:54 PM

For HEDS, they generally go off the beighton scale and Brighton criteria, if you tick more than a certain amount, you have HEDS

Sep 14, 2016 4:17 PM

Thank you for letting me know Hun (Zebragirl). I have already done both of those but the people who did them with me were incompetent so I need them re-done.
I know that ttey base it loosely of of those, DNA, symptoms and elimination of other possibilities.

Baba door. We are all sarcastic at times, it's he only way to get by. I for one won the time lottery. Wrong place wrong time when a driver decoded to not look and pull out onto a main road... and I probably have sh*tty genes

Sep 14, 2016 11:15 PM

Eds 3 type and neurological stuff, maybe POTS Drs think now.

Oct 16, 2016 6:41 PM

Eds type 3 πŸ™‹

Oct 18, 2016 12:01 AM

I have so many disorders that they call it EDS spectrum disorder, becuase I have so much more then just EDS and I live in cali

Oct 18, 2016 9:33 AM

I do too. I think I was better able to deal with the pain when I didn't know it would never go away

Oct 21, 2016 9:56 PM


Oct 22, 2016 6:03 AM

Hello. 44 yrs old diagnosed last year after 20 years of saying I think something systematic is wrong. Relief to know. My genesist had trouble classifying me as either non-benign or benign (hypermobile). Said I have lots wrong with me but ended up in benign bucket. πŸ˜€.

Oct 31, 2016 3:23 AM

I have EDS confirmed eds3 however I exibit more classical with some ruptures. I'm falling apart though I'm strong. I have TOS and orthotic hypotension

Nov 02, 2016 1:45 AM

@Shannon902 thames for the research letter it was kind of you to share.

Nov 02, 2016 3:03 AM

I have HEDS, fibromyalgia, and POTS. It took me 39 years to be diagnosed. I've been having issues contributed to HEDS since I was born and no one ever put it together.

I'm falling apart pretty quickly despite my advocating for my own health and self-care. It's not an easy syndrome to live with.

Nov 02, 2016 10:47 PM

Yep. Hi.

Nov 05, 2016 6:07 PM

@kaiserwilhelm - yes! Oh my gosh me too! It has taken me years to figure this out. Sometimes I slip and roll onto my side to sleep and I am in pain for days. Now I can't really roll over bc I use a large wedge pillow (originally intended for under my knees/legs). In addition, to keeping me on my back, this wedge takes the pressure off my jaw, which would dislocate while lying on my side, AND bc I grind my teeth when I'm stressed and I have to wear a CPAP mask 😷 for apnea, I was starting the day with tension headaches which turned into migraines! Being propped and on my back has really helped all of it! Who knew? πŸ˜‚

Nov 05, 2016 6:18 PM

@Talicia Ever since my "official" diagnoses 3 years ago of EDS, Fibromyalgia, sleep apnea, anxiety disorder, sensory overstimulation, chronic fatigue syndrome, etc., it seems like I've deteriorated rapidly. Did I really or is it just that I finally have a name for it all (and it is NOT "bat-shit crazy bitch) 😝 and I've kind of given in to it? No, I don't think so exactly. I've accepted I need help and I am limited. I won't accept this is as good as it gets. I will keep doing all the right things and trying new things to be well. I'd be happy to share what I've learned so far and what has worked for me if you're interested or have questions. Love your hair btw. πŸ‘Œ

Nov 06, 2016 11:10 AM

Would love any tips and tricks. For instance, how do I get my subluxed tibiofibula joint back in?

I always thought all my issues were from my moderate scoliosis and a lot of it is, but who knew my scoliosis was from having EDS?! Freaking no one until now.

I fell last Jan 2015, frayed every ligament in my ankle, triggered fibromyalgia, and took 9 mos to heal. Been going downhill since. Then I went home to visit my family during the lowest barometric pressure in history in Louisiana apparently, and started full on atraumatic dislocations and subluxing more than just my sacrum and vertebrae. Now it won't stop.

Finally getting fitted for ring splints and bracing. Just hate that I can barely take care of myself now. Luckily I have an amazing boyfriend who tries his best to do it for me.

Nov 06, 2016 11:22 AM

I wish doctors in WNY weren't so against bracing. Mine are all dead set against any bracing during the day. My knees have taken to twisting when I walk, and I can feel the bones rubbing on each other. (I have bone on bone osteoarthritis) I even had to make my own ring splints because they refuse to believe hyper mobility causes pain. When I dislocated my ankle I had to buy my own brace because according to them I didn't need anything to keep it in place.

Nov 09, 2016 3:51 PM

Oh my Ann. I am so sorry. You honestly need new doctors. I fired so many before I found ones that would actually read the documentation on EDS and pain and how it affects our body.

I never wear the braces unless it's absolutely necessary. Because they do cause atrophy if you wear them all the time. Most of my braces are neuromuscular in nature so they activate my muscles instead of just holding them in.

I also bought a perfect bauerfiend genutrain knockoff on Wish for 8$. And a shoulder brace for 5$ that keeps my shoulder from dislocating at night when I turn over.

If you haven't yet, join a support group on facebook. They usually have one for each state, sometimes region. You can get lots of information on doctors there, good and bad. Good luck.

Jan 06, 2017 12:21 AM

Yes. Hello fellow zebras

Jan 24, 2017 1:54 PM

Hey, I'm 29 and recently diagnosed with EDS Type 3. 3 years ago I caught a vicious virus which set the whole thing off. A lot of my pain has been neurological and left neurologists a bit stumped. I was told that I might never get a diagnosis and to continue existing on a good amount of medication. The last year or so, a lot of my pain has been muscular rather than solely neurological. Last week I saw a physiotherapist who diagnosed EDS type 3. I was sent away with lots of information to take in and I've got an appointment for multiple injections into my neck next week.

Can physiotherapists make such a diagnosis? From reading up on EDS the diagnosis does seem to make sense. I'm a bit confused about next steps. Do I need to see a doctor who specialises in this area? Your help would be greatly appreciated!

Jan 24, 2017 2:47 PM

Hi there,
I'm 18 and have type 2 EDS w/ hypermobility traits, as well as POTS.
Currently saving up for the London specialist!

Jan 24, 2017 4:43 PM

Any doctor knowledgeable about it can diagnose it. I see my primary care provider, she then refers me to specialists. But most doctors in my area know absolutely nothing about it.

Jan 25, 2017 12:55 PM

Hi! I have hEDS too!! I just recently found out about and was diagnosed with EDS after 10 years of searching (since I was 9!!). I still haven't figured out how to keep all my joints together, but I'm learning! I've heard that KT taping helps especially at night??

Mar 14, 2017 11:08 AM

Hi, I have hEDS too and have been to UCLH. I was diagnosed by Dr KazKaz after 30 something years of being in pain! I am now waiting for a date to go to RNOH for the rehab programme - has anyone else been on it?

Mar 23, 2017 5:00 PM

Wow ! I didn't even think to search EDS here, somany Zebras! Me too!

Mar 25, 2017 7:25 AM

There is a new post today by a 12 year old names Lifeonpaws. She has been diagnosed with benign hypermobility joint syndrome and is asking for suggestions from others with similar problems. I wonder if any of you could talk to her? I don't have this So am not sure how best to help her.

Mar 25, 2017 6:49 PM

Sydney... There is a post titled New Here and in Pain. By LifeonPaws. She is newly diagnosed. Maybe you could help each other? Or at least talk? Just a suggestion. :)

Jul 13, 2017 3:41 AM

I'm in the process of getting a diagnosis but I think eds is the most likely culprit.

A long time friend and Nurse Practitioner thinks that I have it and I've only found doctors that know nothing about it, with one saying he doesn't think that's it because "it's too rare".

I have an appointment with an EDS specialist in September so we'll know for sure around then.

Jul 13, 2017 11:50 AM

Hi I'm just finding out about EDS I too was diagnosed with fibro but I just knew inside myself that wasn't it. I fit the symptoms of Ed's so very much more. Does anyone literally hurt when there is a loud noise? Sudden or unexpected loud noise hurts the worst. I know I sound crazy but....there it is. Any more information like symptoms that aren't on the regular lists I'm reading would help. I think I have the hypermobility type. Possibly the vascular one, they can't ever stick me can't find veins and when they do for an IV my veins collapse. also in reading here I looked up POTS and that completely fits too. do they generally go hand in hand?I'm with a new dr ( first one I've had in over 5 yrs) so I've been trying to deal with this myself. dealing with the pain has been the worst, can anyone tell me what I should be able to expect as far as medication I've read that when other people get diagnosed their dr suddenly gives them the pain medication they need (finally takes them seriously) Before I lost my dr five yrs ago I was on 240 Dilaudid a month along with muscle relaxer and others. trying to find a new dr they give you with hydrocodone 5 Mgs which this new dr says is an insult and is what is given to children. I am just asking do drs know how serious the pain is with EDS. Am I finally going to be taken seriously... or do drs treat this like they do fibro. "oh yes fibro is very painful...take some ibuprofen..." I'm just so tired of being treated like a drug seeker just because I want what little bit of a life I had... I want it back. Thanks

Jul 13, 2017 8:49 PM

I completely get what you are saying about loud noises! It's better when I'm expecting them though. As far as being taken seriously on pain after being diagnosed, I think it depends on your doctor and how much they are willing to learn about hEDS. After diagnosis at age 43, I'm 46 now, I've been told that "hypermobility doesn't cause pain", "you can't have hEDS because your skin isn't stretchy enough", "just because you can put your foot behind your head at 45 doesn't makeyou hypermobile." I could go on all night with things I've been told, or others in my family have been told.

Jul 13, 2017 9:11 PM

Thanks for the reply. There is do much I need to learn about this. I just knew it wasn't fibro...but when I started reading about EDS there is so much I just live with that I had either forgotten about or just live with like it's normal... I just hope this new dr is open to educating herself...but she seems like the type. Any other off the wall symptoms or just ones that aren't in the normal lists I'm reading online would help...I'm writing down the ones that match up with me for my next appt so thanks in advance... geez these days we have to do all the research and leg work to show drs what's going on...I vaguely recall a time as a child where people went to a dr to find out what's wrong...πŸ˜‹

Jul 13, 2017 9:22 PM

Some things I can think of off right now are: I was born without an earlobe on my right ear, I have an underdeveloped tonsil on the right side, in the fourth grade my vision went from 20/20 to 20/200 in four months, my theeth are horrible, and that's all I can think of right now. The best advice I can give is to remember EDS is faulty collagen and our bodies are 80% collagen. EDS can effect any part of that 80%.

Jul 13, 2017 9:45 PM

Yeah some days it feels like it working on all 80% at once... sometimes it even seems like Eds isn't to good at math and go for all 100%πŸ˜‰

Jul 14, 2017 4:01 AM

My rheumatologist has me diagnosed with Benign (hah!) Joint hypermobility disorder and fibromyalgia. But that doesn't explain my low blood pressure, how I get tunnel vision when standing unless I have an insulting amount of salt, the fact that my pain is only in my muscles after a joint has been hurting, or how I don't think I've ever had a full week of regular bowel movements. I have been told I have all kinds of sleep disorders, formally diagnosed with bipolar with hypomania and no psychotic features, generalized anxiety disorder, panic disorder, depression (until that was rediagnosed as bipolar, minor pain in my teens was blamed on and ADHD. Only ADHD ever responded much to treatment. I also had braces and a pallet expander. I have also been try to find an answer to my chronic fatigue since high school. These diagnoses all mimic symptoms of EDS, especially viewed together. I also have a chronically subluxed shoulder (and probably also both wrists though the pain from those is a lot less), and have sprained things in my sleep on many an occasion. I've had problems with 'weak joints' since childhood, and my Kung Fu master insisted I do strength training for my wrists and sometimes my ankles so I wouldn't hurt them. He noticed my wrists bending with punches despite fantastic form, and I sprained my ankle enough to worry him. In fact, if not for his training I would be in much worse shape probably, but I'm going on a tangent.

A friend of mine for many years, who is also a nurse practitioner but lives very far away, after hearing me complaining of these things for years, finally noticed me posting about the chronically dislocated shoulder. He insisted I get checked for EDS, and I feel certain that it's far more likely to be EDS rather than all those things above separately. Especially since there are other random symptoms that fit in line with EDS but no diagnosis I have. I'm just desperate for an answer and some real help. It's gotten to the point where I can barely walk through the supermarket anymore, and my knee and ankle hurt LESS than my shoulder and spine usually. I have an appointment with a specialist in September, and if they says it's not EDS and can't point me in a direction for answers and relief, I don't what I'm going to do.

A few years ago the mental side of things knocked me out of college because of their severity, and I thought the physical pain was just a part of that. I have run out of treatments for them, as they all either made me break out in a rash or did nothing of use. If it's a physical problem, well, it's a new hope. But I've had so many tell me that it's all in my head I can't help but doubt myself, even with so many reasons not to.

Sep 10, 2017 9:59 PM

eds 3, fibro, and a bunch of other stuff from both.

Oct 17, 2017 5:17 PM

Hey ! I also have Ehlers Danlos type 3 !

Oct 25, 2017 8:55 AM

Yup! Fellow EDS-er here! (The experts are beginning to suspect we're far more common than originally thought.)

Jan 13, 2018 8:55 AM

Seeking diagnosis in year 4 now.

Jan 13, 2018 10:55 PM

Yep. Eds-ht and two children with the same

Jan 20, 2018 7:37 AM

Hello ! I have HEDS (diagnosed in 2013), hyperadrenergic POTS, adrenal insufficiency.... I'm 32 (but my body's 80 πŸ˜…) and I'm French.
Currently it's either my spine or my immune system wich gives me hard times.
There's an awesome EDS community on Instagram if you want to meet more people with your disease πŸ˜‰
Take care of yourself !

Jan 24, 2018 1:54 AM

I’m in the process of getting diagnosed with hEDS after a long time of joint issues. Currently looking for a new primary so I can go to a specialist. A few drs and my pt agrees with me that it’s most probable that I have it. Trying to keep myself together until then, literally.

Jan 24, 2018 4:45 PM

How I also have EDS (3). So sorry you're struggling

Jan 25, 2018 1:52 AM

In addition to my last comment... I have EDS along with pots, Addison's disease, fibro and many other comorbidities

Jan 28, 2018 2:57 PM

Yes. Here as well.

Jan 29, 2018 7:00 AM

Here. EDS abd POTS

Feb 02, 2018 11:59 PM

Type 3 here among other things.

Feb 04, 2018 4:22 PM

πŸ™‹β€β™€οΈπŸ™‹β€β™€οΈ here

Apr 23, 2018 10:05 AM

I'm on the dx train. Headed for a rheumatologist in June to confirm suspicions if hEds, but given I just popped a rib back in and mums the same I'm pretty confident. I actually am a genetics lab worker myself so am fascinated by the lack of a marker for this condition.

Apr 24, 2018 8:27 PM

I have ehlers danlos!! My brother has it as well. We have different fathers so I assume it comes from our mother. It definitely plays a role in fibromyalgia.

May 01, 2018 9:10 AM

I was diagnosed as hypermobile. Just moved to Cali and had to find new docs. He took one look at me and diagnosed hypermole right away. He has refered me on to be tested for EDS but the waitlist is over a year long. I have another year to go before i get to see the genetist.

May 04, 2018 10:07 AM

Yep... have it...

May 05, 2018 12:52 AM

I live in California but willing to travel out of state to find an Ehlers-Danlos Syndrome Specialist. My dr said to try Mayo Clinic in Arizona. Also have Chiari Malformation and Tethered Cord Syndrome with myriads of symptoms including a headache that never goes away. Does anyone know a good EDS Specialist? Also anyone know any doctors that do Ketamine Coma therapy? Thanks!

Sep 11, 2018 11:28 PM

I was just diagnosed with it. Thought my thumb tricks were cool as a child, now know better. Looking for more answers as my job is very physical and I have to be able to lifts heavy things at times. Any one else in a similar state?

Oct 29, 2018 3:22 PM

Yep! I've got it too! Nobody knows why I got it, since both sides of my family are stiff as a board, but I make up for all of their stiffness ;)

Nov 16, 2018 8:49 PM

*waves, groans and catches arm

Zebras Unite!

Nov 27, 2018 9:15 PM

It looks like I have it too... waiting for geneticist to do testing. Trying everything I can to alieve pain naturally

Nov 29, 2018 10:10 PM

hEDS here, plus MCAS, Chiari, Raynaud's, IBS, vascular reflux disease/chronic venous insufficency, more orthopedic stuff than I can count, atypical migraines, Asperger's, and of course, fibro, to name just a few of my 56 (and increasing) diagnoses.

Apr 15, 2019 2:32 PM

I have Eds

Apr 15, 2019 2:32 PM

It is very painful

Apr 15, 2019 2:34 PM

It is causing me a lot of pain

Apr 18, 2019 10:27 AM

I have Asperger’s syndrome, type 1, type 3, and type 9 Ehlers Danlos syndrome

Apr 21, 2019 10:36 AM

Aspie zebra (plus a ton of other stuff) right here, yes.

Apr 21, 2019 1:23 PM

I am also an aspie zebra with 70 other conditions including sleep Apnea bipolar and others psychiatric and physical

Apr 21, 2019 11:08 PM

Try to contact ScaryAnn she has alot of really good info. You should be able to PM her

Aug 27, 2019 11:06 AM

My life is nuts right now, but it will slow down some come the end of October. Farmer's Markets keep me hopping in the summer. (Not that I can actually hop, but I'm sure you all know what I'm talking about. :)

Dec 21, 2019 8:52 AM

Hello, I'm also diagnosed HEDS, chiari, de-tethered cord, fibro, asthma, etc....... I'm 47 now and have had issues since birth. Pain and suffering are part of every day, but I try to live the best I can.

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