When to Suspect EDS

Edit March 16, 2017: This post was first written in early 2014. Since the new, much tighter criteria for the most common form of Ehlers-Danlos syndrome, hypermobile EDS now known as “hEDS” has just come out as of March 15th 2017 here, I would like to preface this by saying that I no longer will say that EDS is not rare per se, but that I still firmly believe the new category of Hypermobilty Spectrum Disorders or “HSD” is NOT rare, just rarely diagnosed. 

This category now supplants the former labels of Hypermobility Syndrome, Joint Hypermobility Syndrome, and Benign Joint Hypermobility Syndrome which some were noting seemed to overlap with hEDS since 2009 here. I’ll allow that the newly tightened and exclusive criteria for hypermobile EDS may put it back in the more rare category again, so I won’t say the same about it anymore.

In fairness to all of our doctors, since the criteria for this new category (and all the known forms of the EDS, plural) has only JUST come out (literally 24 hours ago as I type this March 16, 2017), we cannot be upset with any of them for not being aware of the new category nor the new criteria. It’s our job to help educate them!

So please read my About EDS and Diagnosing EDS posts after you read this one to learn more about all the forms of both EDS and the new category for those who aren’t quite bendy enough: Hypermobility Spectrum Disorders that was just created in 2017. And know that I now intend this particular article to apply to both HSD, and the hypermobile form of EDS primarily.

I cannot and will not speak to the more rare forms of EDS here, since they are truly so rare that I haven’t met enough people exhibiting them to make the same judgment. Further, you guys have such easily visible phenotypes (visible physical signs and gross medical complaints) and get diagnosed so much more easily, you do not tend to suffer from the years of invalidation and misdiagnosis that the so-called “milder” or less hypermobile (bendy) forms do. This article is aimed at this latter population to help them to be suspected and recognized sooner, not the rare forms, sorry, thanks!

Original post pre-March 2017:

Remember the six blind men and the elephant story? Hypermobility Spectrum Disorders and hypermobile EDS are more like SIXTY blind men and the same elephant! (Podiatrist, dentist, neurologist, cardiologist, dermatologist, allergist… the list goes on!) So I’m only sharing a few general ways to suspect them here. I’ve come up with a growing reference list of other signs and ways to suspect them here too for shorter attention spans.

There are almost unlimited symptoms ultimately, since being systemic it affects virtually every body system to some degree and in often unexpected ways. But we have to start somewhere, and this is my start.

Others are welcome to do the same. And, not being a doctor, I can’t and don’t expect anyone to take me half as seriously as they probably should, if at all in some cases, thanks to all the misinformation and misunderstanding around these lousy connective tissue disorders.

But if I can raise just one other person’s suspicions or  “zebra-dar” if you will, much less a doctor’s along the way, I will have succeeded in my mission to bring a small shred of enlightenment to the medical world and hopefully reduce the time to diagnosis and related unnecessary suffering for a few of my fellow sufferers out there.

Image of a child's bendy hand

A child’s bendy hand

That said, I am not a doctor, so do not take what I write as either gospel, nor as medical advice – let me be clear, you should always consult your preferred medical care provider about your own individual health. If you don’t like your current doctor, change doctors if possible!

And… I personally recommend ultimately seeing a knowledgeable medical geneticist to get diagnosed if you do suspect any form of EDS, as it strongly resembles several other heritable disorders of connective tissue (HDCT’s) including Marfan’s Syndrome, Osteogensis Imperfecta (OI), and Stickler’s Syndrome, which should be properly ruled in or out via thorough family medical histories. We have a lot of overlapping signs and symptoms and issues. Though technically any doctor can and may diagnose the new category of Hypermobility Spectrum Disorders, and we hope they do start to to ease the backlog of suspecting patients.

But a medical geneticist will know how to differentiate these, as well as know when to suspect the more dangerous forms of EDS like Vascular (formerly Type IV) or Kyphoscoliotic a bit better. But we are finding all of the currently qualified medical geneticists to be overloaded with patients now suspecting any and all forms of Heritable Disorders of Connective Tissue (HDCTs) including HSDs and hEDS. So The international Ehlers-Danlos Society is hoping to encourage more doctors to feel brave enough to diagnose more of these sometimes milder less obvious forms with the new guidelines as of March 15, 2017.

So, I’ll highlight some of my personal unprofessional theories, again, emphasizing to take what I write with a grain of salt. (Literally, for some of you with POTS, smile).  That said, this post IS based on over five years of my personal online observation of literally over 20,000 afflicted individuals with every variation on the theme you can imagine from all over the world via Facebook and the former EDNF’s support forum Inspire where we all…. (drum roll please), COMPLAIN of all our issues!

In fact, I’m probably privy to much more thorough “histories” than most of their doctors, because we DO listen to each other and feel safe sharing and have the time to do so, unlike at the doctor’s office.

And no, I’m not reporting things I’ve only seen just once or twice, but common themes I see frequently.  Why we win this freakish bad health lottery I do not know, but we seriously do. (It is a systemic condition after all.) With that, here we go:

My “Fibro Theory”

First and foremost, as all my friends and family know well now, I personally believe almost all people with “Fibromyalgia” likely have some form of Hypermobility Spectrum Disorder and/or hEDS. Seriously. I really well and truly now believe that fibro is really just likely a “lighter” or milder presentation or aspect of Hypermobile EDS (hEDS) and or the new category of HSD based on all the complaints and descriptions I read from thousands of very vocal fibro patients on Facebook and Twitter. And they’re a very vocal bunch as they struggle to be believed as I once did.

I personally experienced fibro-like symptoms and widespread pain since my 20’s in the 1990’s that I was not able to eliminate or improve while adhering to a modern working lifestyle all these years, and so just “sucked up” and carried on despite as best I could. (Not always successfully.)

Further, all of the remedies fibro patients are finding to help alleviate their symptoms including careful physical therapy, especially warm water therapy and nutritional work are exactly what help EDS patients (including me) the most! Now either that’s one heck of a coincidence, or we’re on to something here.

I can’t agree more with Dr. Jaime Bravo, a leading rheumatologist in Chile with whom I’ve corresponded who posits that Fibromyalgia is just a form of pain experienced by hEDS (or now HSD) patients in his “When To Suspect” document he shared with me in 2012. He’s still using the older naming system, so it is called Joint Hypermobility Syndrome on his site here: http://www.reumatologia-dr-bravo.cl .  However he also agrees that all these other forms called JHS, HMS etc. should all likely be called  HEDS, now too. (Update March 2017: Or a form of the new category of HSD.)

I seriously struggle to silently watch while thousands of fibro patients struggle to control their logically wide-spread pain that isn’t aided by anti-inflammatories or pain meds, or not much, and describe experiences as bad and sometimes worse than my own with hEDS. Some are even using a wheelchair as I did in 2012 – from just widespread pain? I don’t think so! I’m willing to bet dark chocolate they likely have loose unstable joints as well.

As one who experienced it up until my “storm” made my “Fibromyalgia” feel like a cake-walk, I’d say it makes a lot of sense if you have a slightly loose skelly, but haven’t fully dislocated anything yet. And no, thankfully few of you will ever have such a bad “storm” or “cascade” of EDS symptom onset, so please don’t needlessly worry, just be aware of your body’s symptoms at all times. That experience is blessedly rare.

It seems to me that if all your connective tissues, muscles and fascia are struggling to hold your bones in place, they would naturally be prone to tender points or trigger points (either or both IMHO.) Toss in likely mild de-myelination we’re now finding common (comorbid MCAD anyone?), and there’s your burning and tingling pain so many enjoy too.

Let’s put this another way. I’ll say I strongly suspect ANY fibromyalgia patient who also has a history of family medical problems on one or both sides, especially including joint pain with or without arthritis (we’re prone to early onset arthritis of all kinds, including OA and RA both), varicose or spider veins, IBS, and any kind of mood or sensory processing disorders. (Hold that thought!)

Of course there’s no easy remedy, because those nerve endings that Lyrica is supposed to be addressing are constantly being re-activated as your fascia and muscles are warped and stretched beyond normal range. (And mast cells line our nerves, and I now suspect their over-activity to lend to our pain – a lot.)  Toss in our extreme difficulty falling and staying asleep from commonly experienced hyperadrenergia (ultimate cause unknown, but it’s extremely common in the community), and boom: Fibromyalgia.

Everyone, medical practitioners and patients alike needs to be more dialectic, and allow for other possibilities, even if you don’t initially agree with them. You may well be right, but… at least you won’t steam-roll anyone in the process of proving so as is wont to happen with many of us. And I say this fully applying same to myself – you are perfectly welcome to disagree with me on any of these view points as they are just that – opinions.

Dysautonomia and wonky (usually low) blood pressure

I’ve also yet to meet an EDS (or HSD) patient who DOESN’T have some form of dysautonomia, most commonly Raynaud’s phenomenon, low blood pressure (though can sometimes spike or stay quite high), GI motility issues, poor temperature control etc.

While a majority will tend to run low blood pressure, some will have the hyper-adrenergic variant, and some can run quite high and struggle to stay down or keep their heart rates down. Though one tell-tale sign of MCAD for me is anyone with high (or normal) BP who can get it to suddenly drop a lot (say 30 points or more) by eating known triggers. One friend literally controls her high BP via oatmeal and bananas and chocolate – not a bad “prescription” if you ask me!

We can have any variation on this theme, including POTS, NMH, hyper-adrenergic or HyperPOTS, etc. that you can imagine. Many experience syncope (fainting) and pre-syncope (dizzyness, light-headedness upon standing too quickly) from low blood volume and poor circulation. Others impinge their vagus nerves and throw up easily, or experience other GI dysmotility. Some can no longer fly in airplanes. Again, combine any of these with chronic pain, IBS, varicose or spider veins, hypermobility and any joint problems, and I strongly suspect you.

Sleeping disorders

I also suspect anyone who has sleeping problems ranging from the aforementioned trouble falling and staying asleep due to hyper-adrenergia (we often get a “second wind” around 9 pm that can keep you well up until 2 a.m.), to all forms of sleep apnea no matter how light or heavy the patient. Toss in high pain levels, and we’re seriously doomed to be sleepless, sigh.

Even thin EDS and HSD patients can have obstructive airway apnea from weak laryngeal tissues and tracheas or vocal cord dysfunction, and lots of variations on a theme of dysautonomia as already mentioned, including Central Nervous System Apnea, sometimes requiring a form of breathing “pace-maker”. I literally had trouble remembering to breathe even in the daytime through my “storm” of 2012 – I only now know the term for this problem in yet again, 20/20 hindsight thanks to some fellow support group members.

I suspect this was a by-product of some cranial-cervical settling that I’ve since overcome through nutritional work and re-strengthening, (thank God! I’m not sure all can.) Toss in any form of Mast Cell Activation Disorder (MCAD, wither Mastocytosis or MCAS) and allergies leaving us prone to waking from the cyclical histamine shed around 3 a.m. and no wonder we struggle with sleep! I’ve stopped waking since cleaning up my diet (going allergy and trigger-free) and taking some chlorpheniramine maleate at night (an old-school sedating anti-histamine that doesn’t leave me hung over).

But I digress. Again, combine poor sleep with low blood pressure, chronic pain and joint problems of any kind, and I’m willing to bet dark chocolate I have a zebra on my hands.

Arthritis and auto-immune patients

I also suspect anyone who has early onset osteo-arthritis and any forms of auto-immune disorders, but especially ankylosing spondylitis (my dad and 2 aunts had this, and I have the factor for it) or multiple sclerosis.

Don’t ask me why, but I’m now finding that much like with Fibromyalgia, a large number of MS patients I meet in real life also show tell-tale signs of hypermobility and joint problems, and lots of food and drug sensitivities.

Who knows why this is, but based on my learning from The Mastocytosis Society Conference in 2012, I personally suspect a lot of MS is secondary due to demyelination from either (common) B12 or other nutritional deficiency issues, or mast cell activation disorders (or both!), since mast cells are known to “line” nerve fibers, if memory serves. (I’ll double check this, but feel free to let me know otherwise sooner, if you know accurately).

I personally think that all the systemic inflammation we experience from either likely leaky gut syndrome, or just plain food allergies (got IBS?) and sensitivities or MCAD of any kind may lead to this as Dr. Carnahan describes here. Again, I have no medical basis for saying this, it’s just my hunch and I welcome further exploration. But Dr. Diana Driscoll (fellow EDS patient and therapeutic optometrist) has been positing much the same theory about Mast Cells and autoimmune disorders on her great website for years now too. Along with the good folks at http://www.mastcellaware.com.

IBS

Speaking of Irritable Bowel Syndrome, aka IBS, I also suspect most with it, as they likely have either high allergy levels, or some form of MCAD or both (like myself) as do most EDS patients. (Almost all EDS patients react badly to anesthetics, both from over-sensitivity, and over-processing – i.e, we need way higher levels of the “caines” – Novocaine, Lidocaine etc.  – to feel any effect, and often get sick from general anesthesia, even days after an operation.)

I really don’t think there’s any such thing as “just” IBS. I think it’s all some variation on the afore-mentioned themes of food allergies and sensitivities, combined with a proclivity to dysmotility from impinged vagus nerves lending to some people’s high nausea rates, and chronic SIBO from weak ileo-cecal valves. So I personally suspect anyone with IBS too. Especially if they also have fibro, natch, which a majority seem to have also! And especially if they have any form of diffuse joint pain or repeated joint problems and allergies/sensitivities. (Sensing a theme I hope).

Chronic Pain sufferers of all kinds

One of the most tragic and detrimental misunderstandings EDS patients face is being accused of being drug-seekers due to our chronic and often severe connective tissue, joint and muscle pain from so many micro-tears, subluxations and insults. (We also bruise easily, fwiw). We can suffer from any and all forms of arthritis, neuropathy, neuralgias, radiculopathies, CRPS or RSD and fibromyalgia.

Alas, we look good “on paper” or scan, if you will, so doctors and nurses will often wrongly conclude we are just simply drug-seeking based on failure to see any gross joint or tendon displacements or tears, and sometimes even with them! Most minor subluxations will not show up on X-ray, and sometimes not even on MRI or CT even with contrast (to which many of us are allergic!) But let me tell you from experience they sure hurt like the dickens!

Thus begins the cycle of doctor-shopping in order to find any practitioner willing to treat our very legitimate complaints and chronic pain, leading to patients often having a long “history” of discarded doctors behind them in their desperate searches for proper treatment and recognition. I feel extremely lucky: I sensed early on that whatever I had was too mild to be taken seriously, and so I simply got on with my life the best I could (and was lucky to be able to), finding my true friends along the way who could understand my inability to “come out and play” as an adult as much as everyone else.

I also got a lot of counseling along the way that was validating, including some of the best I’ve ever experienced from Dr. Chino, one of the author’s of a great book I recommend: Validate Your Pain. It probably also helped that I asked for and attended a pain management class through my HMO over 7 years ago when I first suspected what I only knew as Hypermobility Syndrome at the time when I took out vertebrae T3-5 twisting while collating medical records of all things, not lifting, ironically.

My great LMT at the time first helped me to suspect this after 3 different practitioners who were treating me at the time all independently called me very “plastic”, smile, and the description fit to a T, but my PCP wouldn’t let me see the geneticist yet.

So I “sucked it up, buttercup” once again, got on with life, until my body demanded to be heard by falling completely and undeniably apart in early 2012 when you bet I needed some pain management! Thankfully my long-doubting doctor knew me well enough to know and believe me when I did break down and beg for some pain medication, and also knew I wouldn’t abuse it (I never came close, and now take almost nothing unless I “bust a move” as I’m wont to do on occasion in my attempts to strengthen and have a bit of a life).  Alas, not all are so”lucky” (or unlucky?) and are dismissed when they fall apart after many failed attempts to be believed.

But others have much more serious radiculopathies, neuropathies and neuralgias from their joints being misaligned and impinging nerves almost anywhere in the body, including the spine and sternum (yes, you can sublux your ribs in front, trust me! and yes it hurts!!)

Sciatica and chondromalacia of all kinds is common, along with costochondritis and herniations of all kinds, and every flavor of spine trouble and resulting pain you can imagine. (Spinal stenosis, spondylolisthesis, sciatica, bone spurs, you name it!)

We just don’t hold together!

 Just because a practitioner cannot see this on a scan or x-ray at any given point does not mean the pain isn’t very very real, alas.

I now believe many drug-addicted street kids and homeless people may be self-medicating undiagnosed zebras since meeting a few this last year. This is why I’m trying so hard to raise awareness for all – I believe we could save our medical (and possibly judicial) systems millions in misguided testing and needless patient suffering and doctor-shopping if we just suspected this condition much more often than we do.

Alas, this is apt to be an ongoing source of misunderstanding for too many for a long time to come since pain doesn’t “glow”, so can only be reported subjectively. I assure you, no EDS patient I know wants to be on pain meds, nor seeks to get high. They just want their pain properly managed as Zyp Czyk describes here. You don’t get high – and shouldn’t – if you are using opiates properly for pain management.

And they need to be heard. Not that it’s any excuse, but is it any wonder we lose patience with our mis-informed and sometimes short-sighted doctors when we’re suffering so but just called depressed? That said, we patients need to be as patient as possible while helping to bring our doctors and nurses with us on our diagnostic journeys as already stated in another post. It’s just very hard when you’re hitting a 9 on the pain scale. (I figure I’ll never self-report a 10, smile. I start bawling at 7 myself. Yes I’m a wimp, and proud of it. I’ll also trade you bodies any day. Any day.

Anxiety and Depression and Autism spectrum

This category is apt to be somewhat controversial, as most mental health patients and sub-clinical “auties” (autism spectrum patients – since we’re no longer allowed to call anything “Asperger’s” per the DSM V in 2014) are quite sensitive to the labels.

Well, I’m sorry for your discomfort, but it’s emerging as an inescapable reality for virtually all EDS families in my observation on and offline in many support groups. My own personal experience and that of virtually every EDSer I know involves some level of depression, anxiety, codependency and any or all of the alphabet soup (OCD, ADHD, SPD, PDDNOS, etc.) that comes with being a sub-clinical less visible highly verbal autistic person, if not being outright clinical. All zebras I know are related to or know someone on the spectrum, to my surprise, and the rest all battle the aforementioned alphabet soup until someone finally connects all those dots, if ever.

Again, who knows why, but this is my personal observation of thousands of people and their behaviors and complaints online, including my own! (I battled severe depression through my 20’s and into my 30’s). I now strongly suspect myself of being a “Hidden Aspie” in 20/20 hindsight since falling down THIS rabbit hole when a fellow zebra asked me about it 2 years ago.  No, I’ll probably never get diagnosed – it’s much too costly and ineffective to attempt without a more “gross” presentation.  But all the tips and tricks for Aspies are working for me. Including strategies for coping with anxiety, stress, ADHD, etc.

I also just discovered a blog post (October 2015) from someone else who agrees here. And found this article describing a case whose mother turned out unsurprisingly to have EDS here.

This seems to come along with seriously pathological codependency and narcissism also IMHO. (You can tell a narcissist, you just can’t tell them much!) No wonder my parents were alcoholics, self-medicating trying to cope with so much pain and stress as I suspect in hindsight. But you absolutely cannot tell a narcissist anything about themselves, they will absolutely not want to hear it. (Mine sure didn’t).

They will also often deny your reality, despite overwhelming evidence to the contrary. But denial (“de Nile”) is not a river in Egypt as we say in recovery circles with which I’m plenty familiar.

And you don’t have to take my word for it. I’ll just keep observing everyone’s very black and white thinking patterns online, including, again, many in the medical profession. I think this definitely adds to the difficulty in getting EDS and HSD diagnosed – some narcissistic patients will not even see a doctor, others are doctors and nurses themselves (there’s a pretty high rate of Hypermobiles in the medical profession, I’m finding, no surprise) and can’t see the forest for the trees right in front of them, alas.

Again, being dialectic will help tremendously here, as everyone starts to just allow for the possibility that this comorbidity exists. (Some may even benefit greatly from dialectical behavioral therapy accordingly.)

Meanwhile, autistic or not, I strongly suggest anyone battling anxiety and/or depression who is hypermobile (bendy) and experiences much pain at all look into EDS or Hypermobility Spectrum Disorders. Every zebra I’ve met in real life (IRL) exhibits fast thought and fast speech, high IQ (sometimes very), incredible creative talents (we’re some of the very best visual artists and musicians of all kinds out there, seriously!)

We’re all very hard-charging, driven, often codependent, Type “A” high achievers – until our bodies betray us. (Trust me, I was one too!) And, hypermobile or not, if you have these traits, you’ll definitely benefit from addressing the resulting issues. Your family will thank you! Remember, we’re really not that rare. So you’re definitely not alone!

Lots of Allergies and Sensitivities

Picture of a child flushing in the face

A flushing child

This last one should come as no surprise to the last category (people on the Autism Spectrum), because the community is rife with them.

We are the folks who have long long lists of drug and food allergies and sensitivities, often from birth, sometimes or even often severe.

A large number have hay fever and grass or pollen allergies of some kind, almost all have some form of skin presentation including eczema, or urticaria (hives) or even urticaria pigmentosa (a special persistent kind of hives that come with cutaneous Mastocytosis).

We are often allergic or sensitive to one or more anti-biotics, salicylates, legumes (peanuts) and tree nuts, the dye in children’s benadryl, aspirin, NSAIDs, corn and corn starch fillers in tablets (that one takes a while to find for many!), eggs, soy, and even chicken or turkey.

We’re the folks who are sensitive to perfumes and scents and chemicals of all kinds, including dryer sheet fumes, hair spray, paint, vinyl or gas fumes. We’re often prone to constipation, but can lose our cookies or need the loo (toilet) in a big hurry after just one bite, meal or drink of the wrong food. (Often diagnosed as IBS).

We may pass 0ut after eating certain allergens or triggers, appearing to just fall asleep, but our BP and breathing rate are really low if you look closely. (Though some will go into serious shock quickly too, alas.) We may test negative for many allergens on the RAST or even blood tests, but still react just as strongly (called “idiopathic anaphylaxis”) to some items just the same. (Blame this on the comorbid MCAD we’re just now getting doctors to recognize.)

We flush red easily especially on the face and neck and upper chest (aka the “mantle”), especially when stressed at all or even mildly warm. We may wake up choking on mucus at 3 a.m. or thereabouts from cyclical histamine sheds or dumps. (A sedating anti-histamine can really help a lot with this!) We can often “write” on our skin with a light scratch that turns red in less than a minute, and may even raise up a wheal (dermatographism). We are prone to skin rashes and spots of many kinds and places, again often urticaria (hives).

Picture of dermatographia (skind writing)

Dermatographia sign of MCAD

Lastly, we are the ones who may vomit for days after any surgery requiring anesthesia (in reaction to the anesthesia). Some require a serious protocol be in place before and during surgery to prevent an event on the table often involving steroids and or antihistamines.  If this is you or anyone you know, please look into Mastocytosis and MCAS and talk to your doctor! You should probably be carrying an epi-pen if you don’t already.

Summary

Again, these are all just my personal unprofessional theories on the matter. Please consult a knowledgeable doctor for your case, but bring them some of the latest info including the Brighton Diagnostic Criteria in case they aren’t up to date yet to help if you suspect yourself now.

But the more I observe in the support groups online, the more my likely “Aspie” pattern-seeking brain manages to file away in yet more categories. I’m not evening covering all the ways in which I suspect people, just some of the more common.

You’ll notice that in all cases, everyone has some signs of GI involvement, along with allergy or MCAD signs, hypermobility (even if stiff, you still sublux or injure easily), mood disorders, Fibromyalgia and most common of all: widespread,  chronic and unfortunately medically invisible pain of every kind.

We’re also finding virtually every diagnosed EDS patient and suspect EDSer can exhibit flying bird hand sign to some degree. It seems that even the least flexible zebras (of which Dr. Bravo himself is one – he says not all are bendy even as children) can bend their fingers back at the palmar (first) knuckle to varying degrees.

But don’t take my word for it. Start looking around. We’re the ones with the early onset varicose and spider veins, stretch marks in both boys and girls even at young ages, even if never large or pregnant. Often myopic (nearsighted, but not always), with crowded teeth and fallen arches, hemorrhoids, hernias and tendonitis and bursitis of all kinds.

We’ve just got to get our doctors to recognize that elephant in the room that everyone is touching, from the podiatrist to the neurosurgeon.  (As Dr. Heidi Collins quoted some anonymous genius: If you can’t connect the issues, think connective tissues!) May your journey be smooth and filled with understanding. The good news: though there’s technically no “cure” (being a genetic defect), there are some things we can do about it besides just sit and suffer! (I did bust back out of my wheelchair in 2013.) I’ll be sharing more on that later.     |When Else to Suspect Ehlers-Danlos Syndrome | Dr. Driscoll’s EDS Primer Video

Protected by Copyscape

33 Responses to When to Suspect EDS

  1. tamingthebeastrsd says:

    Wonderful article! Thank you so much for your work here! I’ll be following, and directing folks to your blog for sure. All the best; Lili @ Taming the Beast

  2. Amber says:

    Amazing how we feel so different but we all have remarkable similarities. Lol simply crazy. My whole family is alcoholics, all have IBS, have 2 narcissists, 3 codependants and here I am… a once codependant that has worked hard to break free. I have the most prominant signs of EDS of everyone, no denying it. I cant drink (thank the powers that be) because I puke so easily. I take no medications, very stubborn about traveling through that rabbit hole. But I do self medicate with medical marijuana. Have no idea what I would do without it. I sleep easily and digest food easily. IBS is not a concern for me. It helps me stay distracted from the pain. As I write this, I take account of what hurts, ummm. Yeah I hurt, a lot. But I can focus here and write this because of marijuana. I also have realized that I may be one of those hidden aspies too. Crazy. I am very hyperlexia and have a high IQ and even in all gifted classes but being in such an abusive home had set me back a little. I am 38 yrs old and undiagnosed. My score on the beighton is 7 out of 9 and also I wanted to throw in your mix, dental issues and lazy eyes. Both also unwritten common signs. My daughter is 10 and also has it, her orthopedic doctor picked up on it right away, amazing, but our symptoms are manageable for now and I am so thankful for that. We are the only double jointed ones in our family.
    Anyways, thanks for sharing!

    • Jan Groh says:

      Than you for sharing too Amber, glad my writing struck a chord and you can relate also. And, thanks for tossing in the lazy eyes and bad teeth in the mix – not one system is spared, eh. I think I may have mentioned those on my comorbidities page and or my “When Else to Suspect” post. In any case, it doesn’t hurt mentioning here in case folks don’t find those pages and posts. Don’t you just love winning the bad bendy health lottery but being so disbelieved by your family? (Not!) I’m glad you’re getting relief from medical marijuana too – many do, and I’ve seen it reduce seizures in a 6 year old with my own eyes. I don’t happen to use it – yet, but I’m keeping it in mind for the future. I also don’t drink any more (I never drank a lot – didn’t want to thanks to the parents), but now it activates my MCAS and isn’t worth it. Thanks for sharing and glad you’re managing okay for now.

  3. Monica says:

    Perfectly said. Fantastic research. When I have a little more time I’m going to pre.t this out and go over it and maybe get bavk In contact with you. I’m just a little behind in school. Due to being stuck home I am getting my MBA Masters of Business Administration for those who weren’t sure. I suppose that’s that high intelligence we have. I do have ADD, my traditional IQ is a 142. Not that it means that much but it does confirm your findings and coincidences.

    • Jan Groh says:

      Thanks Monica! Validation is always appreciated, not that I mind folks disagreeing either – I’m more dialectic than most. But my intuition and observations keep proving to be on for a majority, so thanks for confirming them. I’m dying to see a study correlating the trait of hypermobility and autism spectrum disorders. Among many other things. One day…

  4. Susan says:

    Thanks for this. Got my EDS from my mother, who was highly narcissistic in the malignant way and highly IQ bright but with no IE and with physical EDS maniestations. I am the family poster child for physical side of HEDS, I can see manifestations in siblings but they don’t believe a word I say as they aren’t bendy. So agree on the bright and quick thiking and high achieving, describes me very well, I don’t think I am massively autistic but certainly feel more secure as single than coupled up.

    • Jan Groh says:

      Thanks Susan, glad you can relate too. Of course, no two of us will be exactly alike but the common themes are just to common not to mention. I believe like autism, EDS is as individual as fingerprints, just in the physical way it manifests. I’m increasingly convinced autism is a neurological manifestation of hypermobility augmented by the neuroinflammation driven by mast cell activation as per Dr. T. Theoharides, which as you know is widely varying in presentation and severity (whence called a spectrum). So our bodies would vary so widely too. Why the less physically afflicted in our families have to also be narcissistc adding to our burden of being believed, I’ll never know – perhaps it’s karmic, and we were all narcissistic doctors in our past lives and dismissed loads of patients etc. ourselves right and left! Who knows, but welcome to the club. We’re defo no longer alone, thanks to the internet. (I like to say, I’m not losing my mind – just my body, er mostly, smile.)

  5. A large portion of this describes me. I’m glad to read that someone else has connected EDS with ‘Aspieness’. I’ve only just connected those dots myself and at last got a diagnosis of EDS, three years after my ‘cascade of symptoms’ began. My first suspicion was MS (since medically, but not entirely personally, ruled out). I’m glad to have found your blog!

    • Jan Groh says:

      Thanks – so glad I could help you confirm your suspicions and connect the dots too. Not surprised. And, I would not be surprised if you also had MS comorbid even still – I find all forms of autoimmune disorders extremely common with this, including MS. I believe them to all be secondary to chronic inflammation from both likely leaky gut syndrome (google it) and Mast Cell Activation Diseases (or disorders) along with comorbid CVID I find, leaving our poor immune systems prone to sort of “PTSD” from needlessly firing off so much at harmless substances that they start to engage in “friendly fire” if you will. Again, just a totally unscientific personal hunch, but I keep finding followers and back up to my observations, including the NIH who is studying the comorbidity of connective tissues disorders and atopy (allergic disease of any kind – both allergies and MCAD of any kind) as we speak. They’ve also noticed a lot of autoimmune disorders common in the same population along with CVID (prone to chronic and recurrent infections, get sick easily/often). I think our doctors just can’t see the forest (Ehlers-Danlos Syndrome) for the trees – autism or Aspergers, CVID, allergies or MCAD (“extra” or “hidden” allergies they can’t test for easily aka “MCS”), all the forms of autoimmune disorders including all forms of arthritis, often early onset, etc. The irony is, all doctors have seen EDS patients whether they know it or not – they’re just not looking for a systemic condition as they refer us out to all the various specialists (60 blind men and an elephant, not just 6) for our various seemingly unrelated issues. To quote some unknown genius fellow patient: If you can’t connect the issues, think connective tissues! (If you know the true author let us know – even Dr. Heidi Collins isn’t sure, though she borrowed the phrase as the title to her talk in 2014 at EDNF.) I think the tide is going to start turning soon as patients become informed and empowered for themselves and drag their doctors with them. Welcome! 😉

  6. Kattsqueen says:

    My dear friend Susan posted a link to your blog today.. I must say she sure can spot the good ones. Susan and I met about 6 years ago on a page dedicated to hypokalemic periodic paralysis. Hypokalemic periodic paralysis is one of many types of Periodic Paralysis. Our particular type is called Andersen tawil syndrome +. It is the plus portion of our diagnosis that brings me here, by the way. We are not your typical Andersen Tawil Syndrome patients. We have facial features and other physical signs that help make the diagnosis. Crooked short fingers, high forehead, nail dysplasia, some with cleft palate. There are many more but too numerous to list them all here. Periods of extreme weakness and even paralysis, temporary in nature, are also hallmarks of the disorder. The dangerous portion of the disorder is we are all evaluated repeatedly and incessantly for the cardiac signs of Long qt a sometimes fatal cardiac arrhythmia. Now for the fun stuff. Why we don’t fit in. Why the big fat + after Andersen Tawil Syndrome. The plus stands for lidocaine resistance and sensory overload (processing?) issues. Joint laxity is a known co-morbidity with Andersen Tawil syndrome. More and more of my compatriots with Andersen Tawil Syndrome are getting clinical diagnosis of Ehler Danlos or mixed connective tissue disorder. In my family aspergers is a way of life by the way. My daughter was diagnosed a few years ago. I took an aspergers test my self and found I qualify as well. It explains so much to me on why I am the way I am. My dear friend I mentioned above was able to get her raw dna data and found not one but several mutations in her genome for connective tissue disorders. MCADs is also a way of life for many of us as well. I just would like to suggest for Ehler Danlos syndrome patients with symptoms similar to mulitple sclerosis please look into Andersen Tawil Syndrome and or other non dystrophic myotonias. Check out facebook pages regarding the disorders. Once diagnosed it is possible to improve life, lessen symptoms and even reduce pain if you have a case of Ehler Danlos Syndrome +. I am in hopes of having my genome sequenced by a researcher out of Switzerland if all goes well. If not I will doing a genome study through 23 and me and will run it my self and look for mutations I suspect I may find.

    • Jan Groh says:

      Oh wow, what a convoluted pathway you’ve had to get to Ehlers-Danlos, but you did! Than you for letting me know about this condition – I have never heard of Andersen tawil Syndrome, but I have heard and seen people complain of MS like symptoms in the EDS groups, so I will definitely look into it, and share your insight, thank you. Somehow this doesn’t surprise me – I’m finding that faulty collagen affects SO many of our body systems, including neurological in so many ways, that I believe you even if I’m sure my doctor and others would accuse us of seeing EDS everywhere because we have it. Oh if they only knew! That is why I’m blogging this comprehensively to help everyone, patients and doctors connect more dots for themselves. And here you’ve connected some others too. I’ll be curious to see what kind of response I get in the bigger groups I’m in with this. I’m sure it’s just not recognized yet, and most are getting diagnosed with MS as you said, if anything. Thank you for sharing!

      • Jenny says:

        I got to this page googling about tryptasemia and paralysis.

        I suspect I have a connective tissue style problem but haven’t pushed pursuing this with doctors. I have confirmed POTS and ME (and also a fibromyalgia diagnosis, though I don’t really think of this as a separate thing). I’m getting episodes of paralysis and daily episodes when I can’t walk (on testing I sometimes have proximal weakness, sometimes not, and inconclusive muscle abnormalities on a EMG test). I’m looking for Occam’s razor style explanations: I would be very unlucky to have all these problems independently of each other so I’m looking for a common cause.

        I wrote about paralysis here https://tipsforme.wordpress.com/2016/05/27/paralysis-and-pace/

        • Jandroid says:

          Oh fascinating! I’ve never connected those two things in particular before – high tryptase and paralysis. But flattered it led you to my site of all places! That said, we find hypokalemic paralysis common in the EDS community, and also autism and MCAD (high tryptase is common though not universal). And I just came across this the other day from someone else in my group:

          https://epiphanyasd.blogspot.com/2014/03/channelopathies-in-autism-treating.html (speaking of channelopathies)

          I’d be more inclined to suspect a potassium trigger, but yet they said your blood was technically okay. But maybe it’s one of those “tests fine but still sick” kind of things we get to enjoy so much. (Right? I’m gonna rename this Gasligther’s Syndrome I swear cuz I think they think we’re gaslighting them when it’s usually the other way around!) “But you look so good!” Sigh. HKP in case you haven’t seen it:

          https://medlineplus.gov/ency/article/000312.htm

          Which upon review seems a LOT like what I experienced at the height of my onset “cascade” in early 2012. I wasn’t fully paralyzed like yourself, but almost once. I never told my doctor (oops, it’s out now), because I had bigger fish to fry and too much going on. (Cue the BeeGees “stayin alive”.) I never got my blood tested, but supplementing potassium stopped my tachycardia and this temp paralysis my friend called “the creeps”, as in, you can barely creep about (if at all).

          And your combination of tryptasemia and paralysis indeed brought up my site, but also this fwiw (maybe you saw already, but for others, seemed interesting):

          https://www.facebook.com/hypermobilesupport/posts/811462395631160

          That said, the next closest I can get you to Occam’s Razor is the RCCX hypothesis I describe at the bottom of this post (read all, it’s worth it to get there), as she feels it may also tie in CFS/ME:

          http://ohtwist.com/2016/02/17/the-chronic-constellation/

          Don’t know if that’s any help, but your story was compelling! I sure hope that doesn’t recur for you. One easy bio-hack way to test: ingest high potassium foods/drinks like carrot juice, coconut water, tomato juice (avoid MSG of V8), molasses, or “NuSalt”, the half potassium chloride salt you can get in US grocery stores next to the regular salt for those who need a low sodium diet – and see how you do. The fact this came on after a hot/warm shower makes me think strongly you’re on the right track. HTH! Good luck.

  7. Laurence Badgley says:

    You are spot on. Read me Laurence Badgley G+ & then contact laurencebadgley@gmail. Com. Keep your thoughtful brain on open.

  8. Trish says:

    I thoroughly enjoyed your article. Thank-you so much!

    I was lead to your article by the picture of the child with the flushed cheeks. That picture brought back so many memories of my youngest daughter who is now a freshman in college. I always knew something was wrong, but could never put my finger on it. Her pedi was also very supportive and also thought her flushing was related to whatever was wrong. Then my daughter started passing out and was diagnosed with POTS when she was 10 then missed most of middle school. Thankfully she was able to return to high school. We found out she also had HEDS when she was 14 after I had been diagnosed. We also suspect that she has a mild case of MCAS.

    I heard a couple of geneticists at the 2014 EDNF conference state they believe at least 50% of the people diagnosed with fibromyalgia also have EDS. Like you, I think the number is higher. The key will be how stiff zebras will be addressed in revised nosology. (at least I hope they will be). I have a sister who has all of the symptoms of EDS and MCAS but refuses to consider it, because she so stiff and also has a primary immune disorder.

    I look forward to reading more posts!

    • Jandroid says:

      I can’t agree more about suspecting your sister also, especially since learning about Dr. Sharon Meglathery’s new RCCX theory of a possible gene complex that may be driving it in a whole family (i.e, all family members can be affected with various issues from the complex in various ways) – it really does explain the variation in hypermobility within a family, but also all the additional issues including primary immunodeficiency and more.

      And, for what it’s worth, I’ve found narcissistic personality to be quite common in our group – many of us have family member or two who just absolutely refuse to listen to anyone else or acknowledge our pain or information. (My dad and sister did this to me, though my sister is coming around a bit lately finally, yay.) You can lead a zebra to water, but you cannot make it drink… I so hope they ditch the darn Beighton scale in May! By the way you can read about Sharon’s theory on my latest post here: http://ohtwist.com/2016/02/17/the-chronic-constellation/

  9. Viv says:

    A wonderfully written article. Completely agree! Can I reblog it?

  10. Wanda says:

    It is amazing how much of this sounds exactly like me. I have been diagnosed with Chiari Malformation 1 and just recently Fibromyalgia. I have had most of these issues all of my life. I am now 47 and I had to fight to get a diagnosis. An amazing blog that was shared on a Chiari Facebook Support Group.

  11. Vanessa Finney says:

    I wanted to add something here just because my journey has been very similar,but has a twist. It all started about 4 years ago. I began to get very ill with all the pain and symptoms you described here. I was diagnosed with fibromyalgia,I bS,divaticulitis,depression,and lots of other things. They sent me to a rhyeumotologist who said my lymphatic system was giving up and I was having a “complete metabolic breakdown” which sounded very scary. So I remembered that I had a doctor,a neurologist that I was seeing for carpal tunnel syndrome years ago, look at my huge legs and say I had lymphatic edema. So I searched big legs ,etc. Well come to find out I have Lipedema,an adipose tissue disorder that is genetic. I travelled to Tucson AZ to the University of AZ Medical Center to see Dr.Karen Herbst who is the top doctor for this in the US to be diagnosed. Also my 16 year old daughter whose legs were starting to accumulate fluid. And she also diagnosed us both with EDS! Now that I have done my research on our condition,there is a huge group of Lipedema ladies who have EDS. Really common. Sorry so long,just wanted you to add us into your research cause we are out here fighting this battle too. Another thing that is very common among us is we often have methylation issues. MTHFR genes that cause this. I also am an observer who is motivated because my daughter and I seriously need help and haven’t found much locally. PS. My mother is a narcissist! I just read, Your not crazy,it’s your mother! 😊

    • Jandroid says:

      I am so glad you mentioned lipedema, as indeed, I have observed the same! A very dear (and very large, alas) long time friend of mine was just *finally* diagnosed with Stage IV lipedema and lymphedema three years ago, and has ended up on disability like myself. Ironically, I of course failed to recognize her hypermobility at first because it was masked by her weight and size, but… since I’ve known her family for years, I recognized signs in her mom, and realized I recognized the body shape from photos some people had posted of themselves in some Facebook EDS groups. And you’re right! It is rather highly (if not completely) comorbid, alas. You poor souls!

      So I actually added it to my growing list of “When Else To Suspect EDS” here:

      http://ohtwist.com/2015/05/24/when-else-to-suspect-ehlers-danlos-syndrome/

      But I agree, I think it might deserve elevating onto my “When to Suspect Page” here too. (Plus, lipedema itself is so poorly known yet. )Also, you’ll be very pleased to know that Dr. Herbst is now a co-author of a just hatched study on the possibility of the RC gene complex possibly being behind all these seemingly disparate issues including EDS and lipedema. You can read about it here:

      http://www.rccxandillness.com (look for the RCCX Project)

      I helped get Dr. Meglathery in touch with her in fact and start the 501c-3. Thrilled to see them off and running so quickly after Dr. M came out with her theory that may well explain so many disparate issues in one family much less sometimes even the same body (patient).

      Also, I now strongly suspect mast cell activation may drive the fibromoas and fibrotic tissue in lipedema since reading leading MCAD specialist Dr. Afrin’s new book (May 2016): Never Bet Against Occam. I highly recommend it. And although he theorizes that MCAS *may* be the driver behind the as yet unexplained most common form of EDS known as Hypermobile type EDS currently, my only trouble with that is why I have some friends who are much more highly reactive than myself but much less troubled with hypermobility, and vice vera – I’m much more hypermobile and have loads of connective tissue issues, but more mild with my MCAS. but, like MTHFR and methylation issues, I do think they play much too well together in the sandbox (aka the extra-cellular matrix).

      As for methylation issues, I don’t think they are the *direct* cause, but I DO definitely agree they are an amplifier of these issues – both the EDS and MCAD (any flavor). I think we need to think of EDS as falling on much more of a “spectrum” just like the comorbid autism it often comes with. But medicine is still very binary (B&W) in its approach yet. (You either have something completely, or you don’t.) Mainly because doctors are only told about the grossest signs of the rarest types of all these conditions yet. (Why I’m writing!)

      Now to get doctors to believe we really can have so much wrong in one body… I’m so glad you got to see Dr. Herbst and get some validation and hopefully some help for your lipedema. My heart goes out to you ladies. My friend is only just now beginning some treatment locally (in Oregon) as she is unable to travel to see Dr. Herbst yet, though she would dearly love to. And probably just in the nick of time, or she may never walk again. Good luck!

  12. Virginia says:

    I am super late finding this post, but I wish I would have found it years and years ago. My right knee started dislocating fully out of the joint when I was 6 years old. No one believed me, not even my mother because I would tell them I put it back in place. Instead of questioning, they dismissed me until they witnessed it in person. My orthopedic guy said I had a congenital defect of the joint and did surgery which helped for about 5 years, it has never been as bad as it was when I was a child but I’ve dislocated it several more times as an adult. I also did not do any activities that would possibly cause dislocation, which I didn’t find excessively limiting but which some people would find restrictive. I was a swimmer in my young life which I think helped build muscle without undue strain on my joints which I think has been a saving grace. I was seen for “exhaustion” in my teens several times, but no one ever found anything, chalked up to allergies. I started having back spasms at 22, which was the first time I was labeled a drug seeker. Had many additional issues with my knee including osteoarthritis, diagnosed with cubital tunnel syndrome and a “weird but not notable” deformity in both wrists at age 32, sciatica at 34, went in with joint complaints at 35 and was labeled a drug seeker again. Have sensitivities to antihistamines, am allergic to acne medications, flush when I drink alcohol, get too warm, am nervous etc. React weirdly to medications, diagnosed with ADHD at age 37, anxiety disorder at age 38, migraines, hypoglycemia, and have been fatigued since my teens. Just recently I have found a doctor who was willing to send me for some testing due to some of my complaints (although she wants to address my joint issues after checking into my heart and brain). My hips are killing me. At my next appointment, I plan to make her sit through my Beighton scale fun. I’m an 8/9 most of the time but I just learned about hypermobility disorders this year and had nowhere to start before. I can only hope that maybe I can connect all of these things. I am one of the lucky ones. Mostly, I function. I am always tired, sometimes considered “weird” due to my various eccentricities, and am often the outcast but, I have always managed to be employed and get through. I tape my knees, and hips, and shoulder etc. and just get through. It would be nice though, to not just be “huh, weird” and to put a name on all of this stuff for once.

    • Jandroid says:

      Gosh yes, I’m so sorry for your paiful journey, but you sound just like so many of us undiagnosed zebras. I’m glad I can help you to connect the dots. And sadly, we get to enjoy a myriad of resulting comorbidities between our lax tissues and very common additional mast cell activation. (Lends to laxity in some, low BP, fatigue more.) When you’re brave, check out this post, to help explain some more of what may be troubling you. Not all of us have ALL of these things, but a darn good number do, that’s how I developed the observation: from complaints in my support groups!

      http://ohtwist.com/2016/02/17/the-chronic-constellation/

      But meanwhile, get the lastest EDS and (new diagnosis category) HSD criteria here, fresh off the press March 15, 2017 (first update in TWENTY years!) https://ehlers-danlos.com/2017-eds-international-classification/

      And trust your gut. I’m so sorry no one believed you before now. I wish you a speedy diagnosis, whatever it is! (Why we aer called medical zebras, even though it’s not really all that rare in many cases.) Hugs x

  13. Kay says:

    OP, I’ve LOVED the many things written on your page, and they helped me SO MUCH in my early days of diagnosis (which I had to find myself, after years of not being listened to, being told I had fibro, etc…and then validated my hEDS suspicions, with a geneticist).

    I suffer from MANY related afflictions, including MCAS (systemic, my GOODNESS does it love to find new ways to affect me!), hyper-POTS, being a “hidden Aspie,” (though I find this to be more of a strength for me, as opposed to a weakness…the meltdowns and sensory processing issues are worth the enhanced mental benefits by FAR for me! 🙂 )…I also have MANY vascular issues arising, as well as CCI, and what I’m fearing is the beginning of Chiari.

    And yet I now face the potential to be labeled as “HSD,” SIMPLY BECAUSE I became less bendy with age (the current age window before a lower score is allowed is puberty and age 50, and for me, puberty hit at age 10…40 years seems to be a long time not to be expected to “stiffen up,” especially as the ED Society used to talk about this stiffening up all of the time!)…also wondering at the fact that ED Society used to say EDS is “not rare, but rarely diagnosed,” then made research-level criteria the DIAGNOSTIC criteria.

    As a fellow “hidden Aspie,” do you also wonder about the lack of rationality that this all has? It seems to me that the ED Society and their doctors are attempting to make EDS SEEM more rare than it truly is…and I fear that I, and others like me, will have our diagnoses changed to HSD, as opposed to what they call “full blown hEDS,” despite all of my above health problems, simply because of these new criteria. I fear the loss of FINALLY being taken seriously, and I fear for the zebras that will now likely NEVER get a diagnosis, because doctors will falsely believe EDS is even MORE rare…also don’t understand why those that have “stiffened up” over the years would suddenly have their dx downgraded…and the paper itself compared HSDs to “full blown hEDS,” as if one is WAY less affected, simply because they are now not bendy or Marfanoid enough. I also fear that many new patients, dx’d with “HSD,” will not take it seriously themselves…and will never be able to look up the connections with MCAS and POTS as I did when I MYSELF was dx’d with hEDS.

    Any thoughts on this? I could understand if they wanted stricter guidelines for a RESEARCH POOL…but these research-level criteria seem to SOLELEY be meant to make EDS SEEM more rare than it actually IS.

    • Jandroid says:

      I somewhat agree, but…. here’s the thing: just like the dear planet Pluto, who we re-classified back in 2006 to a “dwarf planet”, a seeming “demotion”, I too have not changed a single spot. Nay, I’m just as afflicted (or more) as when I was first diagnosed with hEDS by a geneticist in 2012. So I’m happy to be the “poster child” for “H-HSD” or “Historic-HSD” now, and say “come on in, the water’s fine!” Here’s the thing, if WE don’t take the category seriously, how can we ever expect our doctors to? Further, by tightening the phenotype for research I think it will likely speed up the research results for some type(s).

      Then later, molecular testing will likely be so advanced (and cheaper) and more available, the rest of us will hopefully be able to just take a test, or submit to WES (whole exome sequencing) or even WGS (whole genome sequencing) and be done. Meanwhile, I’m exhibit A of why they need to take the new category of HSD quite seriously – I’m extremely symptomatic and disabled still, even if no longer very bendy at all except for my fingertips now. (In fact, I’ headed back to bed today because of it, I’m having a “Bed Attachment Day” or B.A.D. day.)

      The key to all this will be getting everyone, BOTH doctors AND patients alike to take the new HSD category seriously, and I think that frankly has to start with us. I know how much less bendy people are suffering. So does Dr. Jaime Bravo in Chile who told me himsel in an email in 2012: “Over half my patients are not lax, furthermore, some never are, I know, I’m one of them.” Uhm, okay! This is a leading world rheumatologist talking! Don’t worry, we’re not backing down. Dr. Bravo’s site is here:

      http://www.reumatologia-dr-bravo.cl/

      And on a good note, I’m finally being able to convince some less bendy MCAD patients in my local PNW support groups to look into the new HSD category finally because of this: they wrote of EDS as “too rare/severe” to apply to them. But they definitely showed signs of mild or localized hypermobility along with their MCAD (whatever flavor). So it’s sort of working… we just all need to jump on board. Meanwhile, validate yourself as I wrote here:

      http://ohtwist.com/2017/03/21/validate-yourself/

  14. Tam says:

    I’m not sure all of it can be attributed to just hypermobility but mast cell activation as well esp with fibro I know people whose joints are very typical but still have pain all over. And cfs and other issues listed here but are also listed as mcad symptoms…

  15. Brenda Verpy says:

    Jan, thank you for this website.
    I’ve just started to suspect EDS as one of my issues but the info out there isn’t the best or easiest to understand for newbies. I have Chiari Malformation and have had 2 decompression surgeries which only helped a little. I no longer vomit every day but all the other symptoms are there. Many people on the Chiari support group I belong to have EDS as well so I started to check into it. It hits so many of my symptoms and issues so I passed this webpage link and the MedicalZebras.com link to my doctor this morning. She is going to look into it (she’s never heard of EDS) and I’m hoping will order the genetic testing. Without reading your website, I doubt I would have pushed to get this done, so thank you. I haven’t read through all of it yet, I can only absorb so much before my brain gives up, but I’ll get there.

    Thanks again!

Leave a Reply

Your email address will not be published. Required fields are marked *