When Else to Suspect Ehlers-Danlos Syndrome

Graphic of Beighton scale signs

Bendy signs of hEDS

Author’s note March 16, 2017: Since the brand new updated criteria and nosology for all forms of the now plural Ehlers-Danlos Syndromes (13 of them) and the brand new category of Hypermobility Spectrum Disorders JUST came out 24 hours ago, please bear with me as I get my site updated to reflect this.

Accordingly, please take the following with a grain of salt, and know that it is intended primarily to target those with the less rare form of EDS, hypermobile EDS or “hEDS” only now, as well as the new form of Hypermobility Spectrum Disorders primarily. 

Prior to March 15, 2017 we spoke of six main forms of EDS only, and some additional hypermobility syndromes (HMS, JHS, BJHS) which seemed to share a lot of overlap and confusing everyone. These have all been folded into either the newly sharpened EDS criteria, or the new categories of Hypermobility Spectrum Disorders for those who don’t meet the tightened Beighton criteria for hEDS as of March 15, 2017 for any reason but exhibit a lot of the following issues just the same, indicating some kind of systemic connective tissue disorder, after all clear ones have been excluded. (E.g. OI, Marfan, Stickler, etc.)

The more rare forms of the Ehlers-Danlos syndromes are enough easier to suspect and diagnose due to their severity that they have much less trouble doing so. Please consult The Ehlers-Danlos Society for more information on all forms (March 2017).

Original post pre-March 2017:

I wrote about my top five ways to suspect hypermobile Ehlers-Danlos Syndrome a couple of years ago. These included:

  1. Fibromyalgia
  2. IBS
  3. Chronic Pain
  4. Anxiety, depression and Autism Spectrum 
  5. Allergies and sensitivities or MCAS (a form of MCAD)

But I keep finding so many additional common signs and symptoms that people exhibit, that I felt them worthy of another post so am hatching this one. Though let me be clear, many of these are actually common comorbidities still, and none of them is truly diagnostic alone. Just part of the trail of breadcrumbs I hope you find leading you to suspect and look further into the EDS (and now HSD, March 2017).

However, rather than expounding on the signs I’ll just list them with a few links where able to outside sources about them. Again, because this is a systemic condition the myriad ways it manifests are rather mind-boggling in number and ultimately limitless: they affect the whole body in some way or another. Again this seems to be what makes it so hard for doctors to identify the condition prompting some wise person to quip:

If you can’t connect the issues, think connective tissues – author unknown*

*If you know the author, please tell me so I can give proper credit! And no it’s not Dr. Heidi Collins – she said she doesn’t know either. She just quoted them too! (She says so in her 2014 talk of the same title at the EDNF Conference.)

The thing is, doctors have only been told about or possibly only remember the grossest signs of the rarest types (of EDS and all HDCTs) for the most part, so many of us with less hypermobile or gross types keep getting missed still. Why I’m writing!

Anyway, on with the unofficial and incomplete list. And if you find yourself checking off more than not, I would highly suspect you!

  • Postive Gorlin’s sign (ability to touch tip of tongue to nose, yes I think this case has EDS, natch)
  • Flying Bird Hand sign
  • W-sitting (don’t do it!)
  • Reverse Namaste or Namaskar sign (able to form the “Namaste” prayer pose with hands behind your back)
  • Severe myopia (near-sightedness) and or astigmatism
  • Nystagmus or repetitive uncontrolled eye movements (magnesium may help)
  • Chronic Blepharitis  or eyelid infections (likely from Selective IgA deficiency, part of commonly comorbid CVID)
  • Weak, crowded or cracked teeth (low Vitamin D contributes to the latter)
  • Peg teeth, or abnormal shaped teeth or microdontia
  • Receding gums that easily bleed even with good hygiene (Vitamin C can help this)
  • Sensitive teeth – this can come on as your ligaments loosen. (Mine tightened up and the sensitivity resolved with Vitamin C therapy yay.)
  • TMJ and all forms of jaw deformities, but especially high palate & crowding
  • Stretchy skin, ability to flip eyelids up (and freak out younger siblings)
  • Contortionist ability, or extreme flexibility in gymnastics or acrobatics
  • Weak ankles, trouble wearing high heel shoes, strong pronation or anti-pronation
  • Clumsiness and poor proprioception (sense of body location in space)
  • Weak knees, loose patellas, hyper-extended knees
  • Restless Leg Syndrome – some find magnesium to help ease this (not all)
  • One side much weaker or more injury-prone than the other, not always your dominant side either
  • Thin skin that tears easily and any scars that widen or grow or move
  • Fallen or falling arches, or any related issues (neuromas, plantar fasciitis)
  • Easy bruising
  • Easy bleeding, trouble suturing, poor healing post surgery
  • “Dodgy” easily blown veins, often require ports for infusions
  • Any amount of CSF leaks anywhere along the dura, but especially out the nose or ears (yes, this happens! Suspect leaks if your headaches worsen the longer you are upright)
  • Deviated septum
  • Crossed eyes or wandering eyes from lax eye ligaments
  • Bulging veins, varicose veins (especially early onset)
  • Venous insufficiency
  • Herniations or prolapses of any and all kinds including hemorrhoids
  • Easy or frequent fainting or dizzy spells (likely from comorbid POTS and dysautonomia)
  • Raynaud’s phenomenon or syndrome, livedo reticularis (purple “mottling” of skin) and all other forms of dysautonomia
  • Chronic constipation with quick flips to diarrhea (IBS) – already mentioned in first post
  • Lots of allergies of any kind
  • Chemical sensitivity, multiple chemical sensitivity (likely really a form of MCAD)
  • Insomnia and adrenal fatigue
  • Sleep apnea, snoring, even in “thin” patients (weight doesn’t help, but we have weak laryngeal tissues), not to be confused with CNS apnea making you forget to breathe even in the daytime.
  • Chronic headaches of almost any kind, including migraines
  • Chronic idiopathic (unknown origin) nausea
  • Bad handwriting, lax hand writing, trouble holding pens or pencils properly, need for pencil “grip”
  • Chronic or recurrent infections, get sick easily or often fighting candida and viruses (likely from CVID or any other variations of primary immunodeficiency)
  • Chronic or frequent heart palpitations or fluttering, tachycardia (PVCs and POTS are common in us)
  • Chronic or frequent or multiple instances of tendonitis (aka tendinitis)
  • Bursitis, chondromalacia of any kind (loss of cartilage between bones of a joint, any joint, though usually knees aka chondromalacia patella)
  • Bone spurs (why this is true I don’t know, but they’re common in us)
  • Spinal stenosis (narrowing of the spinal canal between the vertebrae, impinging your spinal cord sometimes)
  • Easy flushing red (from MCAD)
  • Trouble swallowing from floppy laryngeal tissues and CCI and mild/occult Chiari
  • Hearing trouble from weak inner ear bones, weak tendons, or sensory processing disorder
  • Sensory Processing Disorder of any kind (including lack of pain in some lucky cases)
  • Poor temperature control (run hot or cold easily, usually cold) goes with dysautonomia
  • Chronic fatigue (may be misdiagnosed as Chronic Fatigue Syndrome aka ME / CFIDS / SEID)
  • Fibromyalgia (already mentioned, and very very common, usually an under-diagnosis for HEDS, may be worsened by comorbid occult MCAD of any kind too)
  • EMF sensitivity – and tendency to “blow” nearby electronics
  • Ganglion cysts, Baker’s cysts
  • Petechiae
  • Peizogenic papules
  • Lipomas and lipedema causing unavoidable weight gain most often in women
  • Osgood-Schlatter’s disease (knobby knees from rapid growth in childhood)
  • Leaky gut syndrome, dysbiosis
  • Hypochlorhydria or low stomach acid (unsure fully why, but it’s common and lends to dysbiosis and SIBO) – possibly from high cortisol and/or thyroid imbalance
  • SIBO – Small Intestinal Bacterial Overgrowth (likely aggravated by weak ileo-cecal valves in us allowing more to “back up” than should plus low stomach acid as mentioned)
  • Keratoconus (droopy or thin “pointy” corneas, hard to fit soft contacts)
  • Sensitive eyes, trouble wearing contacts
  • Weakness, mitochondrial disorders and disease
  • Seizures, hypnic jerks, myoclonus and actual epilepsy
  • PTSD, anxiety and panic disorders
  • Depression and mixed mood disorders of all kinds
  • Stretch marks or striae in any gender, not just after pregnancy in women
  • Pelvic floor dysfunction, prolapses (uterine or rectal, bladder, any)
  • Ptosis (drooping of anything, but most noticeably saggy breasts in women)
  • Drooping upper eyelid or eyebrow sometimes requiring an upper eye brow “tuck”
  • Sciatica
  • Claw finger or hammer toe or claw toe
  • Early onset arthritis of any kind, as well as any other auto-immune diseases (very common in us, likely secondary to leaky gut and chronic inflammation)
  • Paradoxic reactions to medications, strong or strange reactions, need for increased novocaine or lidocaine
  • Vocal cord dysfunction
  • Trouble swallowing (can have both neurologic and allergy-type drivers)

I’m stopping here for now, but will periodically add to this list. Many of these were already listed on the common comorbidities page, but I’m trying to add signs that in themselves are not full comorbidities, but just signs we find common in EDS and HSD patients. Alas, I’ve caved and ended up adding/sharing a couple that are driven by one of our most common comorbidities I find: MCAD.

And I will re-iterate that though many patients are quite flexible or “bendy”, and some even extremely so,  NOT ALL are very or even at all “bendy” or flexible! So do not consider yourself exempt just because you are not, sorry. Many of us stiffen with age and early onset arthritis, and some, like Dr. Jaime Bravo a leading rheumatologist in Chile with EDS himself told me never are in 2012.

Note March 16, 2017: They/you may now be getting re-classified as having a form of the new Hypermobility Spectrum Disorders instead of a form of EDS accordingly, but that remains to be seen. Check with your doctor using the new criteria guidelines from The Ehlers-Danlos Society please!

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64 Responses to When Else to Suspect Ehlers-Danlos Syndrome

  1. Sara says:

    I have about 40 of these symptoms. The ones I don’t have, my family members DO have. This included my parents, sister, cousin, and 3 second cousins ages 3/7. I have CFS, POTS, hyper mobility syndrome, scoliosis, thyroid and adrenal weakness, TMJD. My GI dr believes I have gastroparesis. My mom has a brain anyurism, IC, CRPS, etc. I was told by a doctor I don’t fit the requirements for EDS… Yeah, I’m seeing a different specialist.

    • Jan Groh says:

      Good on you! Although I’m sorry to hear you’re a likely fellow EDS patient (and yes, quite likely from the sound of it), I’m glad I could empower you to advocate for yourself with your doctors with this post. One has to wonder just what else they think causes so many different issues in one body without thinking systemically. Good luck in your pursuit of a proper diagnosis.

      • Amanda Oshea says:

        Holy hell I have so many of these!!! And so do so many of my family members!! My son was diagnosed with masto, u.p. I had asked if things were connected; I have asthma, Ibs, skin conditions, tmj, plus my own allergies are crazy; they keep assuring me his condition was a fluke and not to care……I think I am going to mention this…..my mom has degenerative disc issues and a whole, laundry line of these symptoms, if not all of them…very interesting. Weird that none of us have been diagnosed with these….

        • Jandroid says:

          Sorry you do share so many of these troubles and glad I could help you mmaybe connect some dots. Gather your family history as much as possible (not all can for a variety of reasons) and bring it to you docrors. I have a sample spreadsheet for same here:

          http://ohtwist.com/about-eds/diagnosing-eds/

          (You can adapt it or make your own of course it’s just a sample)

          Good luck, Jan

  2. Janice Oliver says:

    Sadly, I have 4 of the top 5 (and previous had all 5). I (or family members) have so many of the long list it’s beyond my comprehension that I wasn’t diagnosed until my mid-40s and my mother died undiagnosed. Too bad more doctors aren’t familiar enough with EDS to put two and two together! We just end up suffering more and for much longer than necessary.

    • Jan Groh says:

      I’m so sorry you share my long painful journey to diagnosis – I too am the first in the family to be diagnosed, and only in my 40’s after falling completely apart from head to toe from a rare onset “storm” or “cascade” that left me extremely weakened all over. (I split my right SI joint, subluxed my R leg, fingers ribs and toes before it was done. I’m still dragging my R leg as we type 3 years later. I now suspect a progesterone “surge” based on subsequent monthly experience as a female.) Between my stubborn stoic family members “sucking it up” too much, and our poorly informed doctors “normalizing” the milder forms and failing to connect the isolated dots, no one figured it out until I suddenly became wheelchair bound in 2012 at 45. This is why I’m blogging – to help alleviate that for all of us, past and future… I pray others find this information and catch on so much sooner too! Glad you feel validated, but sorry you share my pain. Better luck to all of us!

      • Laura Stevenson says:

        My illness started as a ‘cascade’ too. It worked its way through my body. I’ve never heard anyone describe it like that before.

        • Jandroid says:

          So sorry to hear that. My geneticist called it an onset “storm”, and then I heard Dr. Claire Francomano (one of the leading EDS savvy geneticists in the US) say they prefer the term “cascade” at the 2013 EDS Learning Conference I attended in Rhode Island. So I try to use that now too. Either way, sudden onsets are rare, but very real alas. Welcome to the club, sorry. Hope you are managing okay and getting some recovery and relief since.

      • Dawn Renae says:

        This concept of a Storm or cascade and the role that progesterone plays was extraordinarily helpful to me. Thank you for sharing this part of your journey and for the awareness efforts! Although I have had some issues of one kind or another all my life, I was doing really well in my 40s….until all of a sudden I wasn’t. I’m almost 5 years into my body self destructing and yet the only reason I’m hearing of EDS is because my daughters podiatrist suggest to her that she has it and the two of us started comparing notes. Doctors need to think zebras!

        • Jandroid says:

          Yes, they sure do need to “think zebras”! One day… Meanwhile, I’m so glad my story could help you to suspect a form of EDS or hypermobility spectrum disorder in yourself at least too. Let me add that the RCCX Hypothesis by Dr. Meglathery may also explain why so many of us also experience sudden onset “cascades” or storms (whichever) after a sudden truama such as a car accident, divorce or death in the family: if we have a borken hydroxylase 21 enzyme we may shunt excess CRH down a differnt pathway forming extra/more progesterone pre-cursor which may also lend to increased laxity, but is not as easily measured as the common form of progesterone. You can read all you like about that hypothesis here:

          http://www.rccxandillness.com

          That said, I’ve found staying as calm and happy as I can at all times to really help, and then being gentle with myself and my body when my hormones fluctuate monthly in spite of all my efforts to be most helpful so far. Good luck to you!

  3. Fiona says:

    Thank you so much for this! I have so many of these symptoms and recently had surgery for Chiari and cranio-cervical instability. Recently I saw a Rheumatologist who tried to discredit my diagnosis because he felt that I wasn’t “hypermobile enough.” It made me doubt my own diagnosis. I am 45 and have arthritis and have lost some of my hypermobility, but I have no doubt that my diagnosis is accurate. My mother is going to be accessed soon as well as my son.

    • Jan Groh says:

      So sorry to hear of another short-sighted rheumatologist – I find your experience all too common. I’m glad you found my page and info validating – I just wish I’d had known and been able to share this 10 years ago (or more) for all our sakes! Glad you got through your Chiari and CCI surgery okay – those are very tricky since we take longer to heal. But not at all uncommon. (I’m lucky to be a rare exception among my friends who are all going back east for the same 2 procedures plus tethered cord release one by one.) Good luck to you proceeding. And trust – and heal – your gut!

      • dina winkel says:

        I have over 50 of these plus added major symptoms/conditions not listed on this extensive list. Thank you Jan for this list; given I am like many others turned away from dx due to rheumatologists negligence, I am needing to find out what other type of dr.s can diagnosis this? I’ve been told geneticists are the gold standard but I know my health insurance would most likely never cover this and if they did it would require a referral from another Dr. or specialist. I’m perplexed what type would be a wise choice? Also would like feedback to know what benefit would it be for an EDS / and or POTS, MCAD patient to get a definitive dx? I’m hearing there is no cure and not much as far as medication (most likely would have paradoxical reactions anyway) Are there certain anesthetic or other precautionary measures to take if you do have it. Are there supplements etc that can help slow down the rate of degenerative changes one gets as they age? I’m 52. Last question; Does anyone know if bladder, uterus, pessaries safe for prolapses?

        • Jan Groh says:

          I do think it’s worth diagnosing: this is the whole reason it took me falling completely apart at 45 to get diagnosed: no one does get diagnosed, so it’s thought to be rare. It needs to be recognized for as common as it really is, as it underlies oodles of other comorbidities, and treating it fundamentally (and being aware of it) can help prevent some secondary issues and injury. I.e, if a PT does not know you’re hypermobile, they can injure when treating for an ache or injury. Another friend increased her cranio-cervical instability by uknowingly riding a roller coaster. I have another friend who nearly broke her neck at a chiropractor’s because he used high velocity neck thrust techniques on her. (And he’s an Olympic team medic, so “knows it all”.) Plus, if you have one of the more severe forms like Vascular or Arthrochalasiac, it’s important for family planning and medical care and consideration. You need to be aware of both biomechanical (different or increased suturing and blood supplies may be needed), and biochemical issues going into any surgeries from the so commonly comorbid MCAD lending to anaphylaxis to anesthesias and medications.

          And I would argue that there is too something you can do about it. I myself am benefiting from high dose Vitamin C plus cofactors (calcium, magnesium, zinc, potassium and Vit D plus a good probiotic); the Cusack Family is benefiting from this protocol she discovered (which I’m also trying to adopt when money allows):

          http://ouredsjourney.weebly.com/

          And the Facebook community is abuzz tonight with the news of a young woman “walking again” after being paralyzed from EDS after she got stem cell therapy in Mexico here:

          http://www.chron.com/neighborhood/woodlands/news/article/Woodlands-teen-overcomes-rare-disease-to-walk-6715196.php

          I of course second the notion to try seeing a geneticist, despite the hardship – many specialists won’t take a diagnosis from any other doctor seriously for some reason. I recommend rheumatologists second to that, but with the caution that most of them tend to find our comorbid and secondary autoimmune disorders first and stop there, ironically. This is partly why EDS goes so rarely diagnosed: it’s masked under the guise of so many comorbidities including MS, RA, Sjogren’s, Lupus, AS etc. (Many of which we do have as well.) That said, technically ANY doctor can diagnose EDS who is willing to read up on it and stick their neck out a touch. Just follow the guidance I give here: http://ohtwist.com/about-eds/diagnosing-eds/

  4. Susan Grevatt says:

    Thanks for your blog, it makes very interesting readingto me, as i was ruled out of not having eds earlier this year by a rheumatologist, who told me that i was far too stiff to have it. She diagnosed osteoarthritis in my hands, shoulders, knees and so on. I have had pains in all these joints from being teenage. Over the years the pains come and go but, they have gone to more joints in my body, also tiredness resulting in low b12 from time to time. Twitching calf muscles that keep me awake at night. It all comes on in waves, one joint will ache, then leave and go somewhere else in my body. I know that i am not as bad as a lot of people but, it would be nice to make sense of it all.

    • Jan Groh says:

      I’m so sorry for this all too common experience with your rheumatologist. I can’t emphasize enough that you do not have to be “bendy” or flexible to be hypermobile and have EDS. Many either stiffen with age like myself (formerly super bendy, but no longer at 48 except in my fingertips, and some never are like Dr. Bravo himself). The Beighton 9 pt score really needs to go away, even Dr. Beighton agrees, and hopefully it might after next year’s international symposium in NYC in May 2016. This is the single biggest red herring we encounter that causes so many to be mis or under diagnosed still. And it’s misunderstood by both patients and doctors alike. Trust (and heal) your gut, and pursue a diagnosis with another doctor after getting well versed with the latest info when you feel up to it. Better luck!

  5. dina winkel says:

    Thanks Jan for posting this. I have over 50 of these symptoms on the list in addition to others not and was also told I wasn’t bendy enough, not even a consideration by yet another rheumatologist. I’m wondering how best to get this diagnosed once and for all given most people need a referral to see a geneticist; can’t afford one out of pocket. Been on disability for CFS and Fibro for years but have ALL these other symptoms and more to boot some which don’t necessarily overlap with CFS and Fibro though some do. I’m 52, not bendy anymore due to arthritis, severe scoliosis,DDD, SI joint dysfunction,severe knee issues, along w/ bladder prolapse, mitral valve prolapse, Heart arrhythmias, frequent low bld pressure and dizzy (used to faint regularly as a child) bleeding disorder platelets aren’t many ones that I have don’t respond to clotting factors well with history of major issues not just frequent bruising, vocal chord dysfunction + 2 other vocal chord dxs, apnea (i’m extremely thin) frequent tenosynovitis in wrists and fingers, and recently a worsening ankle pain that prevents me from being able to walk many days a week. No rheumatologist can answer why I have trouble walking and just say its that I’m getting older, must be from fibro. Any ideas from anyone how best to find a dr? would it be a neurologist? I also can’t have certain anesthesics due to a genetic disorder that runs in my family that I just found out about( was adopted) It caused my birthfather and brother both to die due to them not knowing about this over 30 years ago. Also can anyone answer what the benefit is in knowing you have this. Are there certain other precautions I should know about?

    • Jan Groh says:

      Thanks for writing Dina. I think I may have answered some of these q’s in my reply to your other comment above. But let me know if you’d like more information than that. It really is worth getting a diagnosis. It can explain soooo much! (As you noted, you have this plus so much more.) To paraphrase Dr. Afrin who paraphrased Occam’s Razor: do you really think there are 57 different things wrong with your patient, or might there not be just one or two systemic explanations? NB I do strongly suspect you from your description. And I’ve yet to meet a fibro patient in real life who does not pass the Brighton Diagnostic Criteria (not the confusing closely named Beighton – with an “e” – 9 pt bendy scale only) for HEDS. You can score a zero (0) on the 9pt scale and STILL PASS the Brighton Diagnostic Criteria as I delineate here: http://ohtwist.com/about-eds/the-brighton-diagnostic-criteria/

      You might enjoy my “Intro to EDS for Fibro patients” video here also: http://ohtwist.com/2014/09/03/intro-to-eds-for-fibro-patients/

      Cheers.

  6. Good gracious… I recently came to the realization that my oldest son has it, but after reading this I realize there’s a strong possibility that I have it as well! I have so so many of the items on this list. But honestly I am at a loss as to what to do about it for either of us. Our pediatrician suggested a geneticist but I don’t know what good that would’ve done, plus that geneticist is no longer practicing in our area

    • Jan Groh says:

      Sorry to hear that Jennifer. The geneticist is only good for getting EDS diagnosed – they don’t help with management or treatment usually, aside from initial guidance and suggestions. (Dr. Francomano in Baltimore being a rare and worthwhile exception.) You need a good PCP who “gets” it, and is willing to be in it with you and learn for the long haul. I do feel it’s worth getting diagnosed though still in case you need to see some specialists or apply for disability later. (Leading neurologist and Chiari specialist Dr. Henderson requires a geneticist’s diagnosis to even see you, he’s in such high demand.) That said, no, there’s no cure, but… there are lots of helpful therapies and strategies, including nutritional that can help. (I’m back out of my wheelchair because of mine.) Check out the recovery stories and solutions at the bottom of my Resources page here and triage your top 3 issues: http://ohtwist.com/eds-resources/

  7. Laura H says:

    Maybe I missed it, but another symptom(s) which needs to be included is prolapse. I had both uterine tilting and prolapse, (until I had a hysterectomy) as well as rectal prolapse, made worse by the uterus leaning on the rectum.

    As well, we seem to be “lumpy”, for lack of a better term. I’ve had three surgeries for benign cysts in my life, all just clogged ducts of one kind or another.

    I only wish I’d been able to add up all my symptoms sooner in life, as I did spend many years with a misdiagnosis and doctors fluffing me off as being a “hysterical woman.”

    Thanks for your posts, love them!

    • Jandroid says:

      Thank you, no, you did not miss it – I did not have it in the list – good catch! I agree, prolapses and herniations of all kinds are also common “extra-articular” (non-joint-related) signs and experiences with EDS, bendy or not. Adding now!

      And your comment about being lumpy also reminds me to add that we’re finding lipomas (fatty lumps, often quite painful) and lipedema (an adipose tissue disorder causing unavoidable weight gain especially in the lower half but notably stopping at the ankles) to be quite common.

      Ironically, this is sort of starting to match my Common Comorbidities post, but that’s okay! People can arrive at the conclusion by multiple routes. Thanks for the input!

  8. H says:

    “Paradoxic reactions to medications, strong or strange reactions, need for increased novocaine or lidocaine” <— New doctors don't believe me. They always think I'm crazy because I don't try to hide that I have mild persistent anxiety and feelings of breathlessness… (even if someone's "crazy" it's screwed up to dismiss them). Anyway, they sure believe me when they give me something and I have a black box effing reaction.

    I just got diagnosed with vocal cord dysfunction today. I want to phone all of the old doctors and tell them "my therapist disagreed with you about me having an 11-year panic attack that looked like asthma that triggered strange gasping. She was right." Of course I won't phone them, but I am annoyed. It seems like older doctors often have never even heard of hypermobility syndromes. I'm sticking with younger, modern trained doctors from now on.

    Also, almost everything on your list applies to me. Good work!

    • Jandroid says:

      Aw thanks, so glad I could help validate your painful experience, but sorry any of us have to go through so much invalidation from so many doctors. If they would just believe us, it would save so much time and money -and pain! I did end up emailing one past doctor who was nice but who under-diagnosed me with Chronic Fatigue Syndrome to let her know the “real” cause of all my fatigue. I knew that wasn’t quite right, but it took me another 20 years to find the real answers. I resisted flaming a few others. And have brought my mildly narcissistic and stubborn PCP “with” me, as he’s been a willing student since I figured things out.

      Trust – and heal – your gut, always. But yes, it’s exhausting to not be believed, especially regarding anesthesia and pain meds. Stay strong, better luck!

  9. Erin Rowland says:

    I am wondering what your thoughts are about mcas and whether it actually can cause eds. Many of us have these onset storms, and some people also seem to recover some function when taking natural mast cell stabilizers (like high dose vitamin c and the Cusack protocol). Do you know of any examples of edsers being cured through conventional (by which I mean rx) mcas treatment — like with dr. Afrin?

    • Jandroid says:

      That’s a really great question I don’t have an answer to yet, sorry. I’m up in the air about that theory – I can see both sides, frankly. I do think extra mediators from mast cell activation can mess with our extra-cellular matrix, thus messing with our connective tissue formation. But what I can’t square is why so many of my friends with much worse MCAD symptoms (any form, Masto or the new dx of MCAS coming out October 2016 in ICD-10) are so much stronger than I am in many cases – I.e, they shock sometimes daily, are much much sicker MCAD wise, but some are still working full time, and one even runs a farm. All walking just fine. Not formerly suddenly wheelchair bound and still struggling to keep walking like me now. Though yes, I know some who are too. I.e, it doesn’t correlate neatly in my observations -yet.

      How come I am not much sicker MCAS-wise (though I experience plenty of low level trouble) but am so much more hypermobile/plastic/weaker? I didn’t notice a lot of anaphylaxis during my onset “storm” of 2012 either. I do recognize more signs in 20/20 hindsight, since I didn’t even know about MCAS at that time and had normalized low-level ana all my life like so many of us- I learned about it later in 2012 from Patricia Murray-Wood on Twitter when she followed me as @Mastocytosis and from @PrettyIll – Dr. Driscoll.

      But, I do read of many people experiencing what you described – onset/increases in hypermobility commensurate with MCAD flares. So I don’t discount that either. Just hard to say – which is the chicken and which is the egg. And does Dr. Sharon Meglathery’s RCCX and illness theory explain it all, perhaps at least in those of us with the as yet poorly defined HEDS as outlined here?: http://www.rccxandillness.com

      Mind you I love Dr. Afrin and think he’s a genius. (I’m dying to get a copy of his new book to read, “Never Bet Against Occam”, link below.) I really like his thinking – outside of the box, analytical, listens to his patients and connects more dots than most. (And works heroically hard to see and treat oodles of us when others won’t. Including many in the regional PNW MCAD support group I currently lead.) So I am not going to dismiss anything he says very quickly! I just take all I hear/see with a grain of salt, plus am weighing against my own (weird) experience. It’s a darn good Q! Afrin’s new book (just out April 2016):

      http://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615/ref=sr_1_1?ie=UTF8&qid=1460753656&sr=8-1&keywords=Lawrence+Afrin

  10. Jessica Jones says:

    Hi iv been diagnosed with Eds type3 an over past few months have been my worst ever I’m constantly tierd an in pain my bowels are terrible 1min diarrhea the nxt constipated. I’m fed up of going to my doctors as they just look at me like I’m a hypercondriac. I just want sum help from them with pain management an physio therapy but I’m getting no where even tho iv been diagnosed by genetics. I’m so depressed an feel so alone with this I wish I could find a doctor that understands what it’s like to live with Eds type 3 or any type of eds really. Lately my eye lids are drooping so servery that my eyes constantly look tierd iv been told to have bottox but my mam had that an it didn’t help so she had eye lift an now she needs another, my mam is in a wheelchair an only now getting the support she needs but iv been told mine is so bad that I need walking aids an I’m only 36 my mam wasn’t as bad as me at my age so I’m really scared of losing any more independence as I have no family help or doctors support I really don’t know where to turn any more I feel life is just to hard 😢

    • Jandroid says:

      Sorry I missed your comment before now Jessica Jones – I’m so sorry for your terrible experience. And an all too common one, I’m afraid, which is why I am writing – to help shed light on it and bring more doctors on board hopefully. But meanwhile, to empower you all, the patients.

      Check out my resources page for some fo the best info to take to your doctors and also see the recovery stories near the bottom. I’m so glad my geneticist suggested Vit C and magnesium to me as helping when I asked in 2012 – they got me back out of my wheelchair and I’m *almost* ready to work again. (If you are allergic or sensitive to corn which is used to make cheap OTC Ascorbic Acid based Vit C supps, try to find another form like Sago Palm based C, or camu camu, or rose hips.) And we recommend other forms of mag also. (Some can only us mag “oil” – hydrochloride flake solution – on their skin, or epsom salt baths.) I’m now doing even better with the addition of the Cusack Protocol also listed here:

      http://ohtwist.com/eds-resources/

      That said, getting a handle on my MCAS reactions also greatly helped – that caused all my alternating diarrhea and constipation. (I’m so much more regular now, glory be!) I did best by going on the GAPS diet to both temporarily eliminate all but one food, and to help heal my gut (we all have signs of leaky gut, no surprpise also, lending to some of our trouble). It’s hard, but worth it, here: http://gapsdiet.com.

      If you can’t handle that, at least do a food journal, and try at least eliminating gluten, and also dairy (which triggers the body/is cross-reactive to the body like gluten) if you can manage it. Yes, hard! But oh so worth it… at least for me. Trying to lower stress and avoid high histamine foods (leftovers, fish, ground meats, hard cheeses) should also help a bunch.

      But every body is different, you have to find what works for yours. But there IS a little hope and help, kay? Also, look for a local support group here:

      http://ohtwist.com/eds-resources/finding-support/

      Hugs! Jan(droid)

  11. Jessica Pate says:

    I’ve been on this journey for about 5 yeats now. I had a triple hit in a years time (car wreck, blood clot in lung and nother wreck). After that I became extremely fatigued and unexplainable pain everywhere. I’ve tried to talk to my doctors about EDS and I’m always told I don’t fit any areas. I’ve been diagnosed with fibro, cfs, bipolar and migraines. I have so many of the above listed that I believe it is time to “educate” my doctor and possibly find a new one. Hopefully my neuro will be open-minded.

    • Jandroid says:

      So glad I could help you connect the dots. Sadly, most doctors only know about the grossest signs of the rarest types as yet, and still think it’s really rare, so you will keep running into this resistance without better information at hand to show them. Be sure to troll my resources page for some of the best info. Castori et al in Italy cite as high as .5-2% show signs of the Hypermobile form of EDS back in 2012 – far from rare! (That’s 1 in 50.) I’ve seen a Cincinatti doctor show a study that found 1% in their area (1 in 100) – again, far from rare. This just isn’t widely known yet.

      And who knows what the results of the recent International Symposium in NYC shared – they will be sharing this finally at the Learning Conference in July this year, so we have to wait until then. (I think they’re compiling all the findings now.) Trust – and heal – your gut, always. And good luck: http://ohtwist.com/eds-resources/

  12. Kristen George says:

    I went for years knowing that something was wrong with me. I went through a few general practitioners, many orthopedics, chiropractors and everyone said I was crazy, and I was young and healthy or would “bounce back”. You don’t “bounce back” from a fractured vertebra after hyper-extending your spine so bad you should have split in half. I finally started seeing a neurologist for numbness and I hit the jackpot with him. He not only figured out that I had EDS, he apologized to me for the lack of medical support I had received before him. He was the only doctor that actually listened to me, took copious notes, and was able to connect the dots to diagnose me. The sad part is that my orthopedic completely dismissed his diagnosis and said that my beginnings of arthritis in my knee and extra joint flexibility is “totally normal”. I’m 36…and to me that doesn’t feel normal at all.

    The list you provided makes my diagnosis even more clear as I have more than I’d like to count, and made me realize that my oldest son is most likely also going to be affected (W sitting, Sensory Processing Disorder with high pain tolerance for starters), his younger brother maybe less so. It is very discouraging to be reminded of how narrow-minded some medical professionals can be. I feel so lucky to have met my neurologist and even though there is no “cure”, I at least know what’s finally going on and hope that others can find the same so-called relief as I did.

    • Jandroid says:

      Gosh I’m so sorry for your terribly long painful journey to diagnosis also, but thank heavens your neuro finally figured it out! Why I’m blogging and writing – to try any way I can – desperately – to help many more patients AND doctors connect all such dots sooner. The ortho sadly thinks all your issues and early arthritis are “normal” precisely because it is so darn common and not rare at all!

      We are their frequent medical flyers after all, so we are who they see all the time. And in the milder (subclinical) cases as I was pre-2012 and you were earlier, they think it’s no big deal because we are not disabled – yet. Sigh. I’m sorry for your son, but… thankfully you both have some answers now and know you’re not losing your minds, just your bodies – and there’s even some hope and help there.

      But at the very least, you are no longer alone! Welcome to the giant “Clan Dumpty”, where no one can put us fully back together again – yet.

  13. SJ says:

    I believe this is comorbid with gender dysphoria. I know multiple (female to male) trans men with this and many (male to female) trans women seem to have hyper-mobility. Autism is also significantly elevated in the transgenser community.

    Like you said above, what are the odds of having three, four, five, etc. rare conditions and dozens of symptoms from common conditions? It’s more likely there is an underlying systemic condition.

    It will be interesting to see which chromosome is involved in EDS, autism, and gender dysphoria and if there is a common cluster of genes influencing these differences.

    I’m having trouble getting a formal diagnosis, so far one doctor has diagnosed me and the primary care doctor he referred me to decided he’d rather holler at me and advocate against hormone therapy than practice medicine that day! Another issue is my arthritis has become so bad I can’t demonstrate that I’m “flexible enough,” though I remember being flexible up until my early twenties, when the ptosis and stiffness appeared almost over night. I’m very frustrated with the medical community. This is the third or forth condition my doctors have missed, which I figured out on my own.

    It’s quite frightening to have this condition, and many other comorbid health complications, when so many doctors have tunnel vision about disease processes and cannot see the patient past their preconceived notions. Occam’s razor should have them asking deeper questions. Perhaps there isn’t time to think during these fifteen minute fly-by visits.

    • Jandroid says:

      I can’t agree more, and have observed the same comorbidity in the LGBTQIA community along with a trans friend of mine who volunteers in the community. (It’s so hard for him to watch his fellow travelers suffering but so few are open to this information!) That said, Dr. Sharon Meglathery may have hit upon the gene cluster that may explain this all here:

      http://www.rccxandillness.com

      I introduce all the major overlapping comorbidities I’ve seen along with her hypothesis here:

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

      I’m so sorry for your diagnostic struggle but, I assure you you’re not alone and I urge you to trust – and heal – your gut. There is some hope and help as I also describe here:

      http://ohtwist.com/2015/12/03/trust-and-heal-your-gut/

      I am back out of my wheelchair and walkling again – albeit with one Lofstrand crutch and a limp still, but… a far sight from where I landed 4 years ago (in early 2012) when I finally (finally! after 25 years of dismissal as “just depressed” because I was a woman) got diagnosed. BTW, I find lots of hope and help for our very real comorbid depressin – I’m increasingly convinced it’s mostly driven by allergies now as I describe here:

      http://ohtwist.com/2016/01/28/depression-and-eds-and-mcad/

      Meanwhile, try to find a local support group if you can. I have links for doing so here: http://ohtwist.com/eds-resources/finding-support/

      Good luck and stay strong! We’ll eventually bring all these tunnel-visioned doctors around…

  14. Kiki says:

    Wow, what a help your posts are. My 13 year old daughter received a diagnosis of EDS and possible POTs this week after months of injures, dislocations. We have struggled to get in front of the best dr to diagnose. Even staff at hospital were flummoxed as to who to refer to, thought it was in my daughters Head and she was deliberately injuring her self or I was an overprotective mum, we had an admission 2 weeks ago with severe inspiritory Stridor, again they think it’s in her head even though been struggling for 2 weeks now, asked for speech therapy to help as been told best way forward, Drs offered CAMHS! Thank goodness for an amazing geneticist who had reassured and diagnosed , now just need to find a supportive Paed dr to support my daughter through the journey we seem to have found ourselves on.

    Interestingly my older daughter displays many of the Symptoms although not hyper mobile to the same degree and although I have been diagnosed with Anklosing Spondalthropothie many of my Symptoms fit EDS

    • Jandroid says:

      You’re quite welcome, so glad the info is helpful! So sorry for (but not surprised) at your lengthy diagnostic journey. (Why I’m writing! To help shorten it for everyone else, hopefully.) Anyway, fellow patient Dr. Sharon Meglathery’s RCCX hypothesis may well explain why the variable presentation in your family as I introduce it here in this post. Do follow the linnk to her RCCX Theory, which while crunchy, is worthwhile to read. It really connects all the dots I’m finding:

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

      Good job sticking to your guns and standing up for your daughter. Please know there is also hope and help for the recovery journey, especially via The Cusack protocol http://ouredsjourney.weebly.com

  15. E says:

    Could you elaborate at all on the tendency to blow electronics? This one seems kind of woo-y, but… I have just discovered I have HEDS and we’ve had a family joke for years that I’m a battery vampire since any watch I wear will die within a week and every laptop I use ends up with a useless battery that refuses to hold charge. Is there any actual plausible scientific mechanism for this? Because that would be kind of mind blowing if even my battery vampirism is connected to this web of insanity!

    • Jandroid says:

      Lol – I love it, “battery vampire” – may I plagiarize that? My Reiki master would love it! There is only one electronic clock she has ever been able to keep running in her apartment because of this problem! And yes, I agree it’s a bit “woo-y”, but… it comes up ALL the time in the support groups, so no, we’re not alone at all. Alas, I don’t have any scientific data/studies to back us on this yet, but… I can tell you I personally blew 3 out of 4 of the engineering department computers while simply trying to replace memory sticks in them while working for the City of Milwaukie, OR in 2010, so trust me… it’s very real! (And yes, I knew how to ground myself – it didn’t help.) I told my boss to leave me back in the office pushing papers and electrons via my keyboard: I would do much less harm! (She gladly obliged.)

      My personal theory/experience/observation is that all hypermobile people conduct (and hold) a charge much more readily for some reason – I have a feeling we tend to run acidic for various reasons I’m sure some one smarter than I could elucidate. (I bet Dr. Sharon Meglathery has a theory on this, see her project at http://www.rccxandillness.com – but only on a slow day with plenty of time, a snack and some water, it’s another deep site.) And here I’d been blaming my trait to “blow things” (and my curly hair) on playing with a Tesla coil while growing up all these years only to find I wasn’t so special after all… 😉 Welcome to the giant “Clan Dumpty” – of Humpty fame, right? We’re still trying to put ourselves back together again… while not blowing any more electronics in the process! Yes, you have found “your people” . 🙂

      • Helen says:

        I have EDS. I have to wear shoes whenever I vacuum. If I vacuum in bare feet, I get electric shocks that come up through the floor into my feet. This happens with any vacuum, in any place that I’m in. I also get a lot of static electricity when I pet my cat. It bothers my cat, so I have to moisten my hands a little before petting. That’s it for me and weird electrical issues, for what it’s worth. :p

        • Jandroid says:

          Ha! Defo don’t vacuum and THEN pet the cat, lol! yes! I think the air rushing through the vacuum builds static charge in us quickly.

          I also don’t vacuum my computer (with shoes or not) ever for this reason… I use compressed air to blow the dust bunnies out and then suck them all up outside the pc.

          Thanks for sharing!

  16. Jo k says:

    Thank you for your list. I have been discounted by many doctors because I don’t have stretchy skin. It took a aortic aneurysm for my cardiologist who pulled my skin and said hmmm maybe you have a less severe form to refer me to a geneticist. I have vascular eds.

    • Jandroid says:

      You’re quite welcome. Glad it could help though very sorry to hear you turned out to have vascular EDS! 🙁 Best of luck to you.

  17. Victoria says:

    This seems minor in comparison, but affects my life personally. Could trouble swallowing cause loud swallowing? I’ve been looking for data on this. I feel everything slide down my throat when I eat or drink and it’s really hard for me not to make noise when eating. If someone with misophonia is around when I’m consuming something I tend to get glares.

    • Jandroid says:

      I honestly couldn’t say if it would make swallowing louder, but it seems plausible to me. Which would be very unfortunate if you live with someone with mysophonia who is very sensitive to such sounds yes. (An unfortunately combo.) Not sure what you can do about it except try to avoid eating near the sensitive people/person whenever possible? But yes, trouble swallowing is very common with EDS for several reasons, including weak laryngeal tissues, impinged brainstems and mild or more Chiari malformation, and cranial-cervical instability. Toss in comorbid MCAD of any kind, which can lend to swollen tissues and our deck is stacked, sorry. Better luck…

  18. Sheila says:

    My 10 year old daughter was just diagnosed with EDS hypermobility type. (She also has Juvenile diabetes!). She was diagnosed by a pediatric rheumatologist due to her weird symptoms, including recurring fevers, that’s where we were referred to. So the rheumatologist had me schedule her for PT/OT to get her muscles strengthened up. We have that appt in about a month. So my question is will the PT be the dr we see re: her EDS or what kind of doctor does one typically see for this?? I know it is not a rheumatologist. Thank you!!

    • Jandroid says:

      THe PT is just one member of a “team” you will ultimately end up assembling to deal with all her issues as they arise, when they arise. Make sure the PT understands she is HYPERMOBILE, meaning “very plastic” (in their terms), so they don’t accidentally injure her. We can and do benefit from PT but only when done correctly for hypermobility/our bodies.

      You should have a good primary care internist who will manage all her care, and make referrals out to the specialists as needed, just as you did to see the rheumy who diagnosed her. BTW, I highly recommend a naturopath and or a nutritionist to work on diet too. (I got better after fixing my diet and increasing vit C and magnesium the most. Find forms you tolerate tho – key.) Even better, a functional medicine doctor would be ideal if you can find/afford one. (That’s an MD with sort of ND training added on so to speak.) You will just slowly grow the “team” as issues arise and she needs to have them addressed – but not before. I would get a baseline echocardiogram done, but if she’s fine, then don’t worry for another five years or so after that unless they tell you otherwise.

      But ultimately sadly we patients (and parents) end up being the “project manager” for it all. Yes, it’s a lot. But you are on the right track. Congrats on getting her diagnosed – that’s a huge step and success! She can/will get a bit better in time. Patience and perseverance is key. (This is where our stubborn streak can be useful.) And, kknow that hormonal swings can wreak havoc with us – progesterone makes you more lax, and both it and estrogen are mast cell triggers. And MCAD of all kinds is commonly comorbid. More on that here:

      http://ohtwist.com/what-is-mcad/when-to-suspect-mcad/

      HTH, good luck. Stay strong! You’ve got this, and you’re not alone! x

  19. Jennifer Hughes says:

    I have 56 of the symptoms. I have mast cell activation syndrome, interstitial cystitis, pelvic floor dysfunction, SIBO (I think) I’m taking an antibiotic for it to see if it helps because testing me must be too hard for my doctor. Ehlers Danlos, ‘fibromyalgia’ chronic fatigue syndrome, apneas, chiari 1, empty sella, POTS, degenerative disc disease, etc. I didn’t know Sibo was related but makes sense. Thank you for these lists and the update about EDS classifications in March 2017. Its people like you that helped me find out my issues not doctors. Keep up the great work!

    • Jandroid says:

      You’re quite welcome, glad the info is helping, though sorry you also suffer from so much of it. I like to say we put the “syn” in “syndrome”, heh. Also, fwiw, I found oregano oil to help my SIBO, in case you either don’t want to to an antibiotic, or it backfires on you (you react). I would avoid Cipro and the other fluoroquinolones in all cases as I write here at least:

      http://ohtwist.com/2014/04/24/avoid-cipro/

      And consider working with a naturopath or functional medicine doctor (MD) to restore your gut health (possibly upping your stomach acid if needed using betaine) to help prevent recurrence of the SIBO. Good luck!

  20. Jennifer Hughes says:

    Sorry for the double post but I just read more of the comments and I too am on the Deborah Cusack protocol (polysaccharide protocol) I started it two years ago before I even knew for sure I had EDS but knew I had Chiari and I had a hunch. It has been a God sent. It hasn’t ‘cured’ me but it makes life more bearable. I haven’t given up over the last 2 and a half years to find solutions to our problems. I figured the more I dig the better shot I have of not living like this forever and helping my kids and others possibly. I remember others thought I was crazy for taking the protocol but I’m so glad I did. It also helps intristitial cycitist a whole lot which I didn’t know until I ran out of distilled aloe. I recommend the protocol for those suffering! Also because of my IC I cannot take vitamin C otc vitamins without having a huge flare. Is there anything else you could recommend that may not harm the bladder lining that is damanged from my mast cell activation syndrome most likely? Thanks!

    • Jandroid says:

      So glad to hear the Cusack Protocol is helping you too! I found the PQQ to really help me most: I stopped peeing like a racehorse all the time finally ahh…! If you react to cheap OTC Vitamin C from ascorbic acid, that means you react to corn, and thus any thing made with corn starch fillers too. (Ascorbic acid is made from corn.) You might try other forms of C (carefully, only one at a time, wait at least a week or two an dpreferably a month to see if notice a difference):

      Sago Palm based C
      camu camu
      rose hips
      tart cherry juice
      Moringa Leaf (see Moringa Tree of Life)
      brussels sprouts and spinach (beware salycilate and oxalate issues with greens)

      And indeed, be careful not to start developing kidney stones as I think I’m just barely beginning to do from too much C plus calcium and oxalates. (I’ve been hitting the kale juice a little too hard lately, oops. Cutting back and adding lemon to my water now to hopefully dissolve those puppies.)

      The PQQ may also help your bladder lining if not on it already. (Pyrroloquinoline quinone I think it is.) And keep the water going in with electrolyets (but not sugar) to help it “stick”. HTH good luck! Someone also just shared this with me on FB tonight: http://physicianstowomen.info/interstitial-cystitis/

      Cheers – Jan

  21. irene says:

    Omg thanks for this. Trying to figure out what’s up with baby. She is not failure to thrive so GI, neurology are apathetic. How about childhood migraine variants? baby has BPT, super rare. There are other kids with EDs and bpt that much I know. Astigmatism? Food protein induced entercolitis to most protein? She Is developing normally for now thank god, but…. epicanthal folds? Single palmar crease? We both have it. No she doesn’t have any obvious disorder, is developing months ahead. Reflux? Microarray, metabolic panel are running. Geneticist said heds genes are not known. I assume it’s a collagen or elastin issue of some sort which is how I even stumbled on eds – was unaware befow

    • Jandroid says:

      You’re welcome and yes, I might suspect some possible form of connective tissue in her from the things you’ve described, but it is almost impossible to diagnose it in babies unless they show signs of a rare form and get molecular testing done and something matches. You may just be stuck suspecting for a while until she’s old enough for doctors to differentiate infantile flexibility from any “extra” hypermobility she may have if any. But yes, this is all sort of a package. Why some are more/so afflicted out of the womb I’ll never know, but you’re not alone. Look for the Masto Moms group on Facebook. Or check out http://tmsforacure.org for some help with the reflux/GERD.

      And trust your gut – your mother’s instincts are virtually always right. Just think marathon, not sprint, okay? And avoid any dyes, chemicals, fillers, GMO’s etc. (And chlorine and fluoride.) Also mind what you’re eating (and how you’re feeling – are you stressed out? Highly anxious? Or calm?), and notice any effects on her if nursing. And consider balancing her gut biome with the help of a functional medicine doctor or naturopath later as this mom did for her autistic son (you don’t have to use exact same method – some can succeed with regular oral supplementation once the child is old enough to handle such a thing) http://www.healourlittleones.com/?p=837

      In all cases, try to work with her doctors patiently, but persistently and do not panic. You will “thread the needle” of her health issues in time, I promise. Despite some common themes, it’s ultimately as individual as fingerprints for all of us. You sound like a great determined mom. I’m sure you’ll figure this out sooner than later.

      Good luck! Jan

  22. Shelby Harmon says:

    WOW! What an incredible resource to have this information gathered in one place.

    I have struggled with pain my entire life, hypermobile joints as a youngster, but stiff / tight joints and muscles fascia as I get older.
    I have a long list of the other symptoms / comorbidities you mentioned above, as to many members of my family. I am the first of my living relatives to suspect and pursue a diagnosis of connective tissue disorder. I recently found out that my maternal grandmother had a brother diagnosed with osteogenisis imperfecta and died before the age of three. This motivated me even more to seek clarity for my family and myself so we can be informed and empowered to care for our bodies and minds.

    I feel like I’ve lived my life in this silent suffering, telling myself it was normal (normal for me!) body sensations, all the while feeling exhausted and more desperate as I aged and pain and medical complications arise and worsen. I am 32 years old determined to obtain the most wellness and best quality of life that I can.

    I’d dare to say that one of the biggest triggers and stressors for an EDS (CTD) patient faces is the indifference and denial from medical care providers, it is for me at least.

    A couple things stand out to me: I’ve been thinking a lot about hormones and relation to my ‘flare ups’ or we could call them ‘cascades’ I have learned 🙂

    I noted a significant decrease in symptoms and overall wellness after the birth of my twin boys and taking dried placenta pills (my own placenta encapsulated after it was dried, no herbs or anything else added). I felt so incredible that I actually ‘craved’ more placenta pills once I ran out. Have you heard anything similar to this? I am interested in doing more research in this topic.

    Also, I’ve been noticing an increase of lights ‘going out’ when I pass by them, this is something I have noticed most of my life, and it seems to increase in frequency at times. Do you have any more information or would you be willing to have more conversation regarding this? I’ve always found it a striking phenomenon and have never found anything to really begin explaining it. I find it fascinating that you listed it as something that EDS patients report!

    Yours in the Journey,
    Shelby

  23. Jandroid says:

    Thanks for the kind words, Shelby, I’m so glad my post is helping you to confirm your suspicions and pursue this further. (Trust – and heal -your gut always, I say!) Our diagnostic journeys are very parallel minus the child bearing – I never hatched any. But I also had many odd issues and symptoms and troubles that always got written off as “just depression” or anxiety until I fell apart suddenly and hard in my mid 40’s from what I now believe to be hormone driven onset “cascade” from peri-menopause in me along with some cumulative stress.

    I say this, as my elderly aunty Sr. Kathleen (slowly declining in the Holy Child center back east) also sort of “fell apart” in her 40’s, despite living a sedate life as a Catholic nun. So while stress may have played an additional role for me, we’re definitely related – we both have bum right legs now that give out easily (are loose) with wonky loosely fitting foot bones (my arches are trying to fall but not succeeding – yet).

    I think your instincts about hormones driving our flares are bang on – Dr. Tinkle stated the progesterone makes us more lax in his original book on Hypermobility Syndrome (whence more women getting diagnosed even though the EDS technically run equally in both dominant genders). And both it and estrogen are mast cell triggers for our lose as well, also contributing. (Some with MCAD find their joint laxity increases with their MCAD reactions.) To whit:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3377947/

    Be sure to rule out OI fully with your family history of course. I now think many of us can/may be “carriers” of some more rare types and other CTDs like OI and just not know it, and appear to have hEDS or an HSD (new dx since March 2017).

    And, you might like what else I wrote/observed here that may further confirm your suspicions. It’s totally unverified/unfounded yet, but I am eager for science to catch up and prove or disprove these observations I’m having of thousands:

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

    And… yes, we definitely blow electronics lol! Just ask my old boss – who sent me to replace memory sticks in the engineering department of the small city we worked for one day. I figured the first one was a fluke. The second one, I started to get nervous. After number three, I told her to leave me back in the office filing as much as she wanted, lol! I wasn’t “safe” around the pc’s, and wanted to “first do no harm”. (My poor colleague had to “clean up” after me and repair or replace all those machines I was just trying to upgrade with memory, heh.)

    Anyway, it’s true. Here are some more things we find “common” in our families, but not necessarily in the general population you might enjoy too:

    http://ohtwist.com/2016/12/02/what-is-normal/

    Thanks again for writing. Best of luck in your diagnostic journey – definitely trust your gut. Hugs,

    Jan

  24. Ali says:

    I was recently diagnosed with Blepharitis and have previously been diagnosed with EDS3(hypermobility type). I’d really like any link to info relating Blepharitis to EDS / hypermobility syndromes. I can’t seem to find it mentioned oin the new criteria for diagnosis. Any help appreciated 🙂

    • Jandroid says:

      That’s because there is no official link, nor mention of any outside of my blog that I’m aware of yet. I’ve just observed it to be comorbid. I suffer from an intractable case myself.

      My hunch is that it’s due to the commonly comorbid primary immunodeficiencies I find come with the condition so much as I describe here. It leaves all of our environmental interfaces “weak” and unable to fight off infections very well, ironically, despite our often over-active mast cells as well:

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

      NB The above is all pure hypothesis on my part. I look forward to medicine uncover more of the real drivers if different than the above. Meanwhile, yes, blepharitis is a bugger! Sorry you share it.

  25. Lavender L. says:

    I am a four on the Beighton Scale, but they are all the passive wrist/finger ones. I can’t hyperflex my elbows or knees. Years ago I could touch both palms to the floor, but no longer. I’ve been told by numerous physical therapists that my chronic back and neck pain are because I have a hypermobile neck with muscles too weak to hold my head up (and carry the strain instead in my neck). I have 26 of those related symptoms, but not the really obvious flexibility ones. I was always clumsy, not athletic. I see my rheumatologist next week, and I’m trying to figure out if I should mention the Beighton Scale score of four, or if since it doesn’t fit the new 6+ (even historically I am not sure if I’ve ever been more than a 5 – but not sure I ever tested enough when younger either.) Do you think it’s even worth mentioning, or is it really just unlikely that someone who can only do the weird flexibility stuff in her hands and neck can’t have a hypermobility disorder?

    • Jandroid says:

      So you would be a prime candidate for a diagnosis of the new category called Hypermobility Spectrum Disorders they just recognized and introduced last March 2017 for those who have many signs of a systemic connective tissue disorder, but are negative for the grosser signs of the more rare forms (including Marfan, Sticklers and OI and all the EDS). You could then be considered for one of these now:

      http://ohtwist.com/hypermobility-spectrum-disorders/

      I.e, the main difference is you just aren’t bendy enough, now, or ever in the right place (key) to pass their beloved 9 pt Beighton scale, but… you are clearly suffering from SOMEthing that affects your connective tissue just the same.

      I like to say dogs don’t bark for no reason ever (even if their reason doesn’t make sense to us), and our bodies don’t “bark” (hurt/injure/tear/sprain/strain, herniate, etc.) for no reason either. Just because we don’t have all the answers about the cause doesn’t mean you’re not suffering and couldn’t and shouldn’t still be treated pro-actively with proper management and support. We just don’t have an easy genetic marker to hang it on, if we ever will.

      BTW, EDS or not, do yourself and your doctors a favor and download all 18 of these papers describing the entire new EDS/HSD nosology and diagnostic criteria now while they are still free here. (Don’t print them all – it’s over 1″ of paper! Just the most pertinent ones for you. Also, do this on a PC/laptop, too many/too big for a phone.) The Ehlers-Danlos Society originally said they would only be free for 3 months, and I’d hate to see the opp to get them go away for you. Even if you don’t think you need them. But this includes the new HSD I just described above as well okay? And share with your doctors!

      http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc

      • Lavender L. says:

        Sigh. Thanks for your support. I saw the rheumatologist yesterday. He agreed I had “some hypermobility,” but because it wasn’t in the elbows or knees, he dismissed it. He said it doesn’t affect diagnoses if it’s only in my feet, wrists and neck. He tried to dismiss me with a fibro diagnosis and a generic packet of info on treating fibro. It was frustrating, to say the least. At the same time, I was feeling very dizzy and my blood pressure was reading incredibly low. Any chance the very low blood pressure is a clue? I’ve been low all my life, but yesterday was into “scary low” territory. Really confusing to me that that was just dismissed as no big deal…

  26. Lavender L. says:

    For what it’s worth, I also just ignored your advice and tried W sitting. I can do that :-p I can also do the reverse Namaskar. I can’t tell if I’m extended enough to have true flying hand or not, but add at least two to my score on your unofficial list of additional symptoms above!

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