My EDS Journey

Photo of backwards prayer with hypermobile shoulders

Behind the back prayer pose (aka Reverse Namaskar Sign)

An ex-boyfriend of mine once said “You’re weird you.  Things happen to you that just don’t happen to other people”.  At the time I was understandably miffed, and even more miffed that there was more than a grain of truth in his words.

Looking back to early childhood there are huge red flags that something wasn’t “quite right”.  One of my earliest memories (I’d be about 4 years old), was being pinned down on the bed, screaming blue murder, while my Mother shoved Vaseline up my back passage because I was constipated….again.   I’m now in my mid forties, and I still only poop every 2-4 days!  I’m not constipated in the traditional sense, ie. little, hard, rabbit pellety poop that is dry and hard to pass.  My poop is usually normal in texture, but sometimes so huge expelling it is a bit like giving birth.  This, I’ve discovered, is due to over stretchy collagen in my bowel which expands rather too much and ends up producing crap the size of elephant dung 😉  Add to this what I personally suspect to be a lax Ileocecal valve, where much of my poop gets stuck in my small intestine instead of moving on smoothly to the cecum/large intestine, and you get chronic lower right-sided abdominal pain and poop that backs right up to your stomach, causing reflux, gastritis (stomach inflammation) and chronic nausea.  Lovely.

Photo of hypermobile elbows

Hypermobile elbows

However, I digress.  Back to childhood, and my Mother’s favourite description of her only daughter: “you see more of her arse than you do of her face!”.  This because I spent 80% of my time doing cartwheels or handstands or backflips – they actually felt more comfortable than my upright self.  In other words, I was highly flexible.  My party trick was picking my nose with my highly flexible tongue (I’ve since learned this is called a positive Gorlin’s Sign), or rotating my elbows round by 180degrees, usually to shouts of “oh my god, you freak!”.  Over the years, lots of medical staff have commented on my “double jointedness”.  No-one ever mentioned it could become a big, big, problem.

I’ve always loved to dance.  I’m not talking Anna Pavlova or Margot Fonteyn (I live in a remote rural area where, when I was a kid, there were no ballet classes, or after school activities of any description come to that), just your regular bopping along to the Top 40 on the radio on a Sunday night, and later getting tipsy and doin’ ma thang in the local nightclubs.  But I always danced on my tiptoes, even when I was wearing 3″ heels.  Trying to dance with my feet on the floor felt like someone had put both legs in a plaster cast.  I later discovered I had very high foot arches, but when I stood up these collapsed due to weak collagen and made me very flat-footed which means I tend to stomp about like a great Clodhopper.  My flat feet also make my ankles turn inwards, which in turn make my knees turn inwards so that I am what is elegantly called “knock kneed”.

High arch at rest                                                                                 Flat foot bearing weight

Photo of high foot arch     Photo of collapsed foot arch

Non-weight bearing ankle                     Weight-bearing collapsed foot arch and rolled ankle.

photo of a normal foot arch

photo of weight-bearing hypermobile ankle

In my early teens I had dental over-crowding which was making my front teeth crooked, so I had to have 4 of my molar teeth removed aged about 11.  I can now always joke that, far from having a big gob, my mouth is actually too small for my teeth 😉  Little did I know then that the red flags for Ehlers-Danlos Syndrome were getting redder and flaggier by the day.

I also started my periods at the age of 11, and have suffered from what is medically termed dysmenorrhea to this day.  If you want to call the feeling that someone is in your uterus with a blow torch and a pair of pliers, and cramps so excruciatingly painful they have you groaning in the fetal position, vomiting, and running to the toilet for days with explosive diarrhea, ‘dysmenorrhea’ be my guest.  I just call it The Curse and can’t wait for the Menopause and the 4 weekly torture to be over.

Photo of hypermobile thumb

Hypermobile thumb

Again aged 11 (see, there’s a puberty theme developing!) I started having back pain.  And to cut a long, arduous, frustrating and infuriating journey short, I was diagnosed with Congenital Spinal Stenosis aged 16, and had laminectomy back surgery.  It didn’t cure the pain, which is now so bad it stops me doing almost anything, including sleeping and wearing high heels which I mourn much more than being able to hoover my lounge carpet ;-).

Photo of hypermobile elbows

Seriously hypermobile elbows

Around the age of 13 I developed daily headaches. They weren’t migraines, but more a tension headache which for some reason always appeared at the same time each day.  Because of this, and the era in which I lived (things were different in the 70s!), I was basically told I was bringing them on myself and to stop being such a weakling.  Panadol Extra became my new and bestest friend.  The migraines started when I was in my early thirties.  For ten years, although I still had chronic headaches, I only had Classic Migraines with aura (in my case zig zag flashing coloured lights which obliterated my vision within minutes) but no head pain.  Then around the age of forty the Common Migraines began, the kind with no aura but pain so excruciating I wished someone would just chop my head off and be done with it.  At my worst I was up to around 2 common migraines per week plus the ever present daily headache.  These have settled down now to about 3 migraines per month, and hardly any headaches – I wish I knew why, but I’m clueless!

Throughout my child and early adult-hood I was very sporty.  I was on the school hockey, netball and tennis teams, though I seemed to get completely knackered when running, much more so than my peers.  I rode horses, biked, did my BAGA gymnastic awards and my bronze and silver swimming medals.  Later, I did dance aerobics 3 nights a week, and lifted weights in my local gym.  I just ignored the fact my back still hurt and that I always fell asleep on the couch at 10 o’clock at night.

Phot of a bruise from Ehlers-Danlos SyndromeBoyfriends commented on what lovely, soft skin I had, but I just thought they were being romantic.  I had no idea that other women’s skin didn’t feel like velvet.  I also had no idea other people didn’t wake up covered in bruises with no clue how they’d been conceived – I just figured I must’ve banged into some object the day before and just forgotten I’d done it.  Good job my Mom wasn’t much into smacking me as a kid, otherwise she might’ve been had up for child abuse!  See photos of how stretchy my skin is on my Skin Blog Post.

I was always a messy eater.  You could tell what I’d had for my lunch from what was spilled down my top.  This gave rise to the inevitable round of jokes from my family who were amazed that someone with a mouth as big as mine could ever miss it with a fork full of food.  For Christmas one year, when I was about 35, my Mum bought me a Pelican Bib as a gift – she was only half joking I should use it ;-).  I could also never play games that involved hand-to-eye co-ordination, like darts or snooker.  No matter how well I thought I’d aimed, the ball never did go in the pocket.  I later found out my Proprioception was shot and my brain had no clue where my limbs were in space, which made judging distances tricky.  Saying all that, I can park a car in a tight space like a pro!

The “you’re weird you are” boyfriend comment came on a holiday in Greece, where I’d been bitten alive by bugs (a standard occurrence for me when abroad) and spent days being sick due to the change in food, water and climate (another standard holiday response).  I just felt like a total loser as everyone else always had a great time on holiday, but I just seemed to find it an ordeal, was always ill and often came home more exhausted than when I went.  Of course I knew nothing then about heat and its effects on dysautonomia and mast cells.

Photo of hypermobile middle finger

Hypermobile finger

In 1994, when I was in my mid twenties, I was diagnosed with Myalgic Encephalomyelitis (M.E.).  My ME story could fill another entire Blog but there is a brief summary here.  Miraculously, I started to recover somewhat from ME in 2004, although I do still have the disease.

As I became more active again, I started to suffer from widespread pain – it felt like my muscles were tearing at the slightest strain, along with stinging and burning and all-over-pain I find hard to describe.  In January 2009 my ankles started to seize up first thing in a morning, and for a good hour each day I could barely walk.  Then 3 months later both my elbows developed burning and stinging pain that travelled down my arms to my hands.  I was diagnosed with “multiple point tendonitis” but no-one knew why it was happening.  My back was stiffening up – not only could I no longer do a back flip, I couldn’t bend backwards at all.  I developed a burning pain between my shoulder blades and my head felt like it was attached to my spine by a red hot poker.  My right wrist became so sore I could no longer lift the kettle and, let’s face it, life without tea is pretty much unthinkable 😉  My thumb and several fingers were also playing silly buggers.  With not a part of my body free from pain I asked my GP to refer me to my nearest ME specialist Dr Gavin Spickett for an assessment.

Photo of hypermobile elbow

Hypermobile elbow & wrist

While I was waiting for my appointment I became increasingly worried about a chronic, bronchitis-like cough that I’d had for about 2 years.  I’d never smoked, lived in a beautiful clean-air environment and, as far as I knew, didn’t have any kind of asthma.  Yet I’d start coughing for no apparent reason, and it would go on for as long as 5 months at a time.  It was exhausting, and at times my chest felt so tight and I felt such an air hunger that I thought I’d die in my sleep.  Several trips to my GP were fruitless, with a brilliant peak-flow reading of 500 (average is about 350 for my age and build!) and a totally normal chest X-ray.  Plus I didn’t wheeze or get short of breath like in a typical asthma attack, just had this chronic, dry, unproductive cough and what felt like an elephant which had taken up permanent residence on my chest.  I was prescribed various inhalers which didn’t help one iota.  The only thing which seemed to shift the cough was a course of antibiotics – only for it to keep returning just a few weeks after I’d finish the course of tablets.

Photo of hypermobile toe joint

Hypermobile toe joint

I saw Dr Spickett in the spring of 2010.  His investigations into my chronic cough, which included blood tests for moulds and inhaled allergens like dog dander and dust mite, were negative.  He said my widespread pain wasn’t ME-related and was probably due to my hypermobile joints.  Of course I already knew I was double jointed, but no-one had ever warned me it could cause pain of any kind.  He referred me for an MRI scan of my spine, which showed very little other than some mild osteoarthritis.  I was gutted to be honest – how was it possible to be in this much pain but have “nothing wrong” with me?! (I’ve since learned that people with EDS need an upright MRI scan.  Like with my foot arches, my spine may appear fine at rest – the issue is with weight bearing and consequently collapsing ligaments and tendons and the affect these have on discs and nerves, which can only be seen when the spine is upright and bearing weight).  I sat in the hospital car park and cried, knowing something drastic was going on but not knowing who to turn to or what to do next.

Photo of hypermobile finger

Hypermobile finger

I came home and thought I’d look online to see what “hypermobile joints” were all about.  I found a disease called “joint hypermobility syndrome” and another that I’d never heard of called “Ehlers-Danlos Syndrome Hypermobile type” (although several other types of EDS exist).  Ding, ding, ding folks, we have a winner!  Reading through the symptoms for HEDS was like reading about my own life, from the childhood flexibility, constipation, menstrual pain, back surgery and dental overcrowding, to the migraines, bruising, clumsiness, tendonitis and stiffness of my later years.  I asked my GP for a referral to a Rheumatologist, Dr Paulene Ho, who diagnoses people with EDS and Joint Hypermobilty Syndrome and was told I was a “classic case” (although I later found I could have seen a consultant much closer to home, Dr Hassan lead Rheumatologist at the Cumberland Infirmary Carlisle).  She couldn’t believe it had taken 42 years for the disease to be picked up, but it doesn’t surprise me one iota that I had to diagnose myself and chose a specialist knowledgeable in EDS to have it confirmed, as most of the health staff I’ve talked to locally have never heard of it, including my GP.  More about my treatment and the rest of my EDS journey in my blog posts.

Photo of hypermobile toe

Hypermobile toe

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44 thoughts on “My EDS Journey

    1. Georgie Georgie

      Hi
      with regards to your migranes: “settled down now to about 3 migraines per month, and hardly any headaches – I wish I knew why, but I’m clueless!”
      EDS hypermobility causing instability of the cervical spine (neck bones) can cause terrible headaches- trapped nerves. I have a very experienced knowledgable chiropractor who regularly adjusts me (she’s a total life saver!!), at the moment my neck is playing up a lot= headaches, and I’ve also changed my diet/nutritional intake which has helped massively too with pain and joint stretchyness. Hope this helps. x

      Also, things I found today:
      this blog is very good: https://ohtwist.wordpress.com/tag/hypermobility/
      and section 8.6 of this is worth a look : http://www.hindawi.com/journals/isrn.dermatology/2012/751768/

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      1. bertieandme Post author

        Thanks for taking the time to comment Georgie and for the links. I tried both oseteopathy and chiropracty and had a huge mast cell reaction which put me in bed for months, so they’re off the table for me unfortunately. It’s just so frustrating when I react so badly to anything which might benefit my symptoms – balancing all 3 of the diseases I have is really tricky 😦 I’m so pleased it’s helped you though. Jak x

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  1. Caitlin

    Hi Jak,
    I had to look twice at this blog and check that I hadn’t written it in a moment of brain fog! Your journey reads almost the same as mine, and my husband saw the pics and asked when I took photos of my limbs! I’m currently struggling quite badly with the persistent cough, especially since recently I’ve sublaxed some of my thoracic rib joints and every time I cough I’m worried about it occurring again (which it has, so not an unfounded fear!). I was just googling to see if anyone had any ideas to help me (more helpful than most doc’s!) and stumbled across your blog. Have you had any suggestions to help with the cough? Have you found that there is any damage that is causing it? Any help would be appreciated! And I hope this message finds you well (as well as possible, anyway!).
    Caitlin.

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    1. bertieandme Post author

      Hi Caitlin

      Really pleased you’ve found my blog helpful, though sorry to hear your bendiness is causing you problems. I can’t diagnose your cough obviously, and can only tell you what it turned out to be for me personally. We’re almost certain mine was down to silent reflux (Google silent reflux for symptoms)! For years I had no signs of heartburn or GERD, just the dry cough (no phlem) and awful upper back pain (which I thought was muscular pain). Turns out the acid was burning the back of my oesophagus rather than the front, which was what was causing the back pain (between my shoulder blades). The cough is caused when stomach acid is inhaled into the lungs.

      GERD in EDS is usually caused by a lax sphincter. The sphincter to the stomach usually holds the stomach contents in place and stops them from regurgitating back into the oesophagus. If you already have lax rib muscles, could be you also have a lax diaphragm and stomach sphincter? Worth investigating at any rate (usually by endoscopy or barium swallow x-ray). Or you could try some over the counter antacids (eg. Tums) or something like Tagamet or Zantac for a month to see if the cough improves. I also sleep with the head of my bed elevated on bricks, which is supposed to stop stomach acid flowing back into the oesophagus while you’re sleeping (my cough was often worst first thing in a morning).

      My symptoms have gotten worse over the past 2 years and I now have classic signs of GERD and possibly a hernia has developed. But for about 7 years I only had the cough and the upper back pain, which were constantly mis-diagnosed!

      Hope this helps
      Jak x

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  2. Caitlin

    Thanks Jak, that gives me something to look into. Anything helps, and it’s better than going to the doctors to hear – ‘you must have a cold’ again.
    x

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  3. izzibel

    Thanks very, VERY much for your blog. You fill in blanks medical sites do not- for instance EDS/Gerd/lax sphincter- my son began throwing up at age 6 every night, until he threw UP throwing up. The eventual gastro told us he was ‘ born without a sphincter’, same gastro who years later accused him of faking chest and abdominal pain. WITH anger, too, this P.A. was hostile. His pectorus excavatum should have been some clue, perhaps someone could have asked if he could touch his wrist with his thumb or bend his fingers backwards in’ prayer’ mode? ( we call it praying sideways ) Shouldn’t someone have twigged?

    He is 15- has played soccer, football, lifted weights, is a great student, was flattened in October of this past year by an injury which has set off some bizarre string of everything ‘ EDS’, either that or a growth spurt took place. 5’11, always was the giant of his class. Starting age 3- has peed blood, developed 2 week migraines ( age 7 ), developed mystery ‘ warts’ ( not warts- docs were baffled- I think they were granulomas) all over his hands and wrists. Dozens of them, which lasted 2 or 3 years then POOF, went away. He has classic pectorus excavatum ( not as noticable when he was lifting ), slight scoliosis-a few other things which are identified with EDS. A rheumatologist said yes, he has this, but refuses to connect his symptoms with it. She says no, it causes nothing! We were just able to get him an appointment this week at a rheumatologist where we know they ‘ believe’ in connective tissue disorders, never realized it would be so tough!

    Do you mind questions from people who are still lost ( and suspect the gene pool was handed down through myself- have a whacking dose of RA, most kookoo symptom has been tendonitis, meaning OUCH-est, but do suspect I’m probably an EDSer myself. Have checked off a lot of boxes from the hyper mobile fingers, only stopped doing splits as party tricks not long before age 50 because something ‘ clicked ‘ bad word, sounded worse ), hurt and seemed it might be a vast mistake to try again! ) and would like some guidance? As I said- genuinely am grateful for your blog, although wow- so sorry for the various trips/journies, you’ve had to take. Hope it’s not asking too much to have to speak of some of it again, and thank you!

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    1. bertieandme Post author

      Hi Izzibel

      I don’t mind questions at all, though I can’t guarantee to have all the answers – ask away. Have you joined the Inspire EDS forum though http://www.inspire.com/groups/ehlers-danlos-national-foundation/ ? It’s excellent and chocka full of really great information – just do a search for the subjects you’re interested in, or post a question of your own.

      It’s a disgrace that doctors don’t pick up on blatant EDS symptoms, but sadly it’s all too common. I’ve been told my whole life I was “double jointed”, even as late as 2010, but no-one ever mentioned EDS (I had to diagnose myself off the internet!). I’m fairly sure mine has come from my Mum (she has Pectus Carinatum and had a spontaneous collapsed lung in her forties) though impossible to tell now she’s in her seventies and riddled with Spondyliltis, Arthritis and Dupuytrens Contracture (yet another collagen disorder!). We don’t seem to have any other family members who have it though, despite my Mum being one of 7 children and me having nearly 40 cousins and second cousins.

      Jak x

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  4. Christina

    Kinda freaking out here. I already have Sjögren’s syndrome, they say Fibromyalgia and I have 14 food allergies and many food intolerances. I have so many symptoms of Ehlers and some if the Mast cell disease….
    I am hyper flexible and my Rheumy found that. It’s in most joints. My daughters are that way too. My skin is super soft too and stretchy but always goes back.
    So who can look into Ehlers? I know an immunologist can look into the Mast a Cell disease issue, I just need to find one who isn’t specifically an allergist too, like mine.

    Thanks to my dietician putting me on a low histamine diet, I started to research and came across your blog. I get fatigue in the evenings pretty bad and have lots if stomach problems. She thought maybe it’s a histamine problem and actually asked me if I’ve been tested for Mast cell disease. I am going to pursue this. Thanks for your blog!

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    1. bertieandme Post author

      Hi Christina

      Really pleased you’ve found my blog helpful 🙂 I’m assuming you’re in America being as though your dietician is clued up on mast cell disease. In the States you usually see a geneticist to have Ehlers-Danlos confirmed. In the UK you’d see a Rheumatologist. It’s important to find one with good knowledge of EDS though – it’s fairly rare and not all Consultants are good at diagnosing. If you are in America I’d suggest asking on the Inspire EDS forum http://www.inspire.com/groups/ehlers-danlos-national-foundation/ for a good geneticist in your area. Good luck.

      Jak x

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    1. bertieandme Post author

      Ehlers-Danlos is usually a genetic disease which is why it’s usually diagnosed by a geneticist, it’s not an acquired auto-immune disorder. People with EDS are born with faulty genes, although in some cases you can be the first in your family with it and not have a family history. There are several types of Ehlers-Danlos: some can be gene tested for, but the hypermobile type is the only one where a gene hasn’t yet been identified. Some types of EDS are very serious and can cause premature death, so it’s important to be correctly classified with the type you have.

      It is not ‘curable’ but needs to be properly managed. For the Hypermobile type you would be referred to a physiotherapist knowledgeable in EDS – general physiotherapy is NOT recommended as it can damange the ligaments and joints, the physio must be EDS specific. Hydrotherapy is also often recommended.

      Most people with EDS have chronic pain, which should be managed appropriately and if necessary a referral to a pain clinic may be advised.

      Many people with EDS also have dysautonomia/|POTS, ie a faulty autonomic nervous system, and again this needs thorough assessment and often drug and other treatments.

      Many people with EDS have gastro-intestinal problems as the entire gut is made of connective tissue. This will need ongoing monitoring and treatment by a Gastroenterologist.

      People with EDS can have Mitral Valve Prolapse so the heart will need to be checked out for this.

      Occupational Therapists and Orthotic specialists are important to people with EDS as they provide finger splints, joint supports/braces, crutches and foot orthotics. Some people end up wheelchair bound or need adatptations to the home in order to get around.

      Dentists and Opticians should be informed if you have EDS as the eyes and teeth can be affected.

      If you ever have surgery the Surgeon must be made aware of your EDS – you are tubed during surgery and this can cause the jaw to dislocate. They also need to be careful with stitches as the skin in EDS is fragile and stretchy – often special sutures are needed or the wound glued instead.

      Ehlers-Danlos is a very complicated disease to have and you need a team of people to manage it well. Despite this women often deteriorate around the time of Menopause.

      Jak

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  5. Manon13

    Hi your story is very similar to mine. I also have eds and i think mcas although not officially diagnosed. I really like your thoughts on mast cells. My eds was badly triggered 2 years ago, i am49, by an ipl treatment to the face. Since then i have lost and keep losing subcutaneous fat all over my body and i react badly to a lot of sensitivities. In my case, i wonder if mcas may explain partly the eds damage to the collagen. I know many have triggers like me…..

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  6. Enduring Angel

    Hiya Jak, thanks for doing such a great blog, I wish I was well enough to read it all. We are so alike, I Have ME (severe and bedbound most of time) EDS3, POTS and am now trying to read a bit about mast cell disorder. Its so overwhelming, I dont have good doctors and no family or friends, so its hard. I was wondering if you were well enough for me to email you some questions etc? No worries if not. Hope you’re having a good day.
    Angel x

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  7. Donna Woodward Taylor

    Hi Jak,
    Reading your blog is like reading my own life story. Your hands and feet even look like mine 🙂 I have had pain for years in the area of my ileocecal valve and now I know why. Thank you so much. I now also have mild hydronephrosis, bladder retention, practically non existent motility, widespread joint pain, “women’s problems” and histamine intolerance. I have just realised that I am very low in magnesium and that antibiotics have been making it worse. Am feeling a little bit better on anti-histamines but am still shaky after eating. Thank you so much for sharing your story, although I am very sad about your suffering it is good to know you are not alone xx

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  8. Sabrina

    I’m sitting here crying while I read your blog because I am 47 and have yet to be diagnosed. I even work in the medical field!
    Just recently there was a short documentary on television which enlightened me to this syndrome. The more I found out the more I was determined I was to get to the right doc. Won’t go into detail but I’ve been suffering with pain since the age of 3 and can check off almost every symptom this syndrome comes with. I saw my doc yesterday and the signs he tested me for, as far flexibility, were all positive so he is sending me on to see a genetic specialist. I’m sure I’ll get over this feeling but I’m so angry that it has taken so long for someone to listen to me. Now that there is a possible name for my chronic illness people around me are being more tolerant. My grandmother was called a hypochondriac (howeve,r I believed her) and my dad is just grouchy because if he complains of his pain he will be too much like his mother…heaven forbid… I’m really hoping for a diagnosis of any kind so that I can be helped and my family can be helped. Very glad to be headed down, what seems to be, the correct path for help. Wish me luck… Sab

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    1. bertieandme Post author

      Hi Sabrina

      I know *exactly* how you feel. I was 42 when diagnosed, and even then I had to diagnose myself from stuff I’d read online and go to my GP (who’d never heard of EDS) and ask for a referral to a specialist Rheumy (even had to find the Rheumy myself!). It just shouldn’t be this difficult. Like you, I’d had symptoms from birth, been told my whole life I was hypermobile (called “double jointed” in those days) and had a rare spinal surgery when I was only 16 which screamed “Ehlers-Danlos” yet still no-one picked it up.

      Wishing you lots of luck with your genetics appointment, though just remember that the Hypermobile form of EDS is the only type with no identifiable gene so if you do have HEDS it won’t show up on a gene test and they will have to go off symptoms, history, the Beighton Scale and the Brighton Criteria.

      Jak x

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  9. Carolyn Collard

    Hi, I have a 13 year old son with lots of HEDS symptoms – hypermobility (diagnosed), bowel problems and constipation, constant joint pain – chronic after exercise, flat feet, problems with the enamel and pitting of his teeth, ice pick headaches, stiff neck to name a few. He has been back and forth to our doctor who just treats him for constipation saying that the other problems are related to that! He was referred to a paediatrician who in turn referred him to a physiotherapist who diagnosed hypermobility and recommended daily exercises but he was then discharged by both the paediatrician and physiotherapist and has been suffering since. He has been to A&E many times with sprains and tendon damage and was recently hospitalized with suspected appendicitis due to severe pain in his right side which they then put down to a virus as he had no temperature and a scan of his appendix revealed it was not inflamed. Our own GP has also hinted that maybe he is unhappy at school and is suffering from anxiety. He has been missing a lot of school as he can wake up barely able to walk or is so constipated or suffering the alternative effects of the prescribed laxatives or is struck down with his ice pick headaches. No one seemed to believe me or him when it came to so many problems. In the end I did the same as you and began to look for help from the internet, stumbling across EDS and recognising the signs. (My daughter had perthes disease and can touch her tongue on her nose, suffered years of projectile vomiting (especially at night) for no reason but has no other obvious symptoms.) I am double jointed, bruise like a peach at the slightest touch, have flat feet, your leg photos could be mine, lots of stiffness and aching joints (which I put down to my middle age), migraines which coincided with my menstrual cycle and recently have had weeks of acid reflux, chest pain and hoarse voice due to the acid affecting my larynx. Many of my symptoms have appeared or got worse since the menopause. We all have huge eyes and eyelids which never open fully giving us a sleepy type appearance (which people seem to find attractive!!) Obviously many of these signs & symptoms can be related to other things but for my son’s sake I would like to know how I can go about getting his GP to take us seriously so that he can get some of the help which may be available (such as pain relief) as nothing over the counter has any effect. On our most recent trip to A&E with neck problems which were also affecting his right arm and above the right ear I mentioned his hypermobility and was actually asked if he had EDS when they looked at his medical history. Strangely enough that was one day after I had discovered EDS on the internet. Sadly although they were able to treat his neck they said that we would need to go back to our own GP with regards to EDS and obtaining a referral. I am in the UK. I have read that HEDS is not always genetic/hereditary like the other forms of EDS so genetic testing is not always the best option. Hoping you can offer some assistance?

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    1. Jak Post author

      Hi Carolyn

      From what you’ve said here EDS seems more than likely, though obviously I’m no expert. You have a couple of options: if you can afford to see a consultant privately (initial cost about £200) you could at least get your diagnosis and a letter would be sent to your GP who would then be obliged to refer you on the NHS for continuing health care. If you’re in the South of England there’s an excellent private EDS clinic in London. In the North West I saw Dr Ho. at Manchester, or you could contact EDS UK http://www.ehlers-danlos.org/ for a list of EDS knowledgeable rheumatologists in your area.

      If you can’t afford to go private you could try contacting EDS UK and obtaining some of their literature to either give to your own GP, or if it were me I’d be tempted to try another GP within your practice for a second opinion. In the North Sheffield is considered the best NHS paediatric option for referral if your GP doesn’t know where to send you for diagnosis. In the South it’s the hypermobility team at UCLH who are the best in the country.

      Wishing you loads of luck. It’s very difficult to get diagnosed if your GP isn’t behind you, in which case you may need to change GPs if this is possible.

      Jak x

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      1. Carolyn Collard

        Hi Jak,
        Following another painful and unexplained ankle sprain overnight I took my son to his GP and mentioned EDS. He pulled my sons skin (which isn’t stretchy) and said he doesn’t have EDS. I tried to point out that Hypermobile EDS does not always mean stretchy skin and that he does have extremely soft and baby like skin but he was insistent so I then asked how qualified he was to make such a diagnosis based solely on skin. My son then had a sudden ice pick headache and twitchy eye right in front of the GP. He did not reply but then decided to refer my son to the top paediatric orthopaedic doctor at our local hospital and also to refer him for specialist physio. I am pleased with this as hopefully the ortho doc will know more about EDS. Just out of interest I decided to test myself on the Beighton scale to see how hypermobile I am. I scored 7 out of 9. And then I began to list my own medical history – when you see it down on paper and I think back to my sleep studies/trips to neurologists etc it appears that ‘dots are now joining’ and I may be the carrier. So now we wait for the appointment letter to arrive but I would like to thank you for your reply which actually prompted me to be more pushy in the doctors room.
        Will keep you updated on progress.
        Regards
        Carolyn x

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        1. Jak Post author

          Well done you on keeping pushing! I really hope this is the start of you all getting the help you need 🙂

          Even though I eventually saw a specialist EDS rheumatologist she still ‘only’ diagnosed me with Joint Hypermobility Syndrome because she, too, said my skin wasn’t stretchy enough for EDS and at that time I’d never had a dislocation and had no gut problems other than long standing constipation. In the past few years, however, this has all changed and now sadly my EDS is much more obvious.

          Doctors are taught that EDS is extremely rare, which is why I think they’re so reluctant to diagnose it. However, if it were diagnosed properly it would become obvious that it’s not rare but under-diagnosed!

          Good luck and I hope you don’t have to wait too long for your appointments.
          Jak x

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  10. Carolyn Collard

    Hi Jak,
    Update on todays visit to the orthopaedic consultant. Very disappointing. I wasn’t expecting him to wave a magic wand and make everything disappear but his answer was that he could fix the bones that break but can’t do anything for hypermobility. Its just something that my son has to learn to live with and cope with. The disappointment on our faces must have been obvious and I will admit we both had a few tears once back in the car. Since I last sent you a message Jack has had 2 ankle sublaxations – one walking downstairs and the other uncrossing his legs, major neck problems, more constipation, chest pains and yesterday he popped a hip reaching for a sweet in the cinema. I wonder what the cinema staff thought when we walked in fine but after the film he had to be supported and was clearly in agony! Luckily it popped back in just as we reached the car so we were able to continue with the rest of our plans but at a much more relaxed pace. On the plus side the consultant has made a referral for us to see a Rheumatologist which saves us paying to go private but I was told told that ‘even if EDS is diagnosed which he doesn’t think it is then there is nothing that can be done anyway.’ I continually read that its an uphill struggle to get any form of diagnosis or help but at least we are another step up that hill. As for pain relief. Why is everyone so reluctant to offer anything more than ibuprofen and paracetamol for a child? It seems acceptable to make children just put up with the pain but I see the effects that this constant pain has on my son and how low he someyimes feels. At our last visit to A&E with an excruciating ankle sublaxation he felt humiliated when they gave him 10ml of Calpol via an oral syringe. They weighed him on a previous occassion and calculated the full amount of ibuprofen he could take as he is a large lad and not a small child so why the Calpol this time when he was clearly in so much pain was beyond me and our voiced concern wasn’t taken very well. At least the guy that came to immobilize the joint and show us how to use two crutches showed some respect for my son, his age and his problems. He had him laughing through the pain as we left and laughter as they say is the best medicine. 🙂
    And strangely enough when my Son spoke to one of his online Xbox friends about EDS it turns out this lad of the same age also has EDS so the pair have since met up and take great comfort in being able to share their problems, fully understand and sympathize with each other as well as support each other. And another girl in my sons house at School also has EDS so he is now not all alone in the stretchy world 🙂
    Hope you are doing ok?
    Carolyn x

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    1. Jak Post author

      Hi Carolyn

      It’s great that your son has found other children with EDS and they can support each other 🙂 I wish I’d known other hypermobile people when I was younger.

      Really sorry your ortho appt wasn’t as helpful as you’d hoped, but if I’m honest I’m not surprised. HEDS is a chronic, incurable condition and there really is very little a consultant can do, other than treat acute issues like bowel obstructions or full dislocations. As you’re finding out, EDS covers a wide range of disciplins (gastro, ortho, rheumy, autonomic) and none of them speak to each other so just deal with one tiny issue/area at a time, which is so frustrating. An EDS knowledgeable physio is probably your best bet, as at least they can help with strengthening exercises which might help prevent future subluxations. A good orthotics referral should also be top of your list, for insoles and advice on bracing when needed.

      I hope you’ve joined EDS UK and spoken to other mums in your position for advice, as I’m not clued up on children’s issues. Hopefully someone there can help with pain relief and how to get adequate amounts for kids.

      Getting the help you need is very area dependent – if you live within referral distance to one of the two specialist EDS centres it seems they’re excellent, and there are odd good rheumys dotted around the country, but most people are just left floundering around in the dark with very little support (I receive none at all). It sucks 😦

      Jak x

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  11. Melissa Eacersall

    Oh my goodness, I could have written this myself! Your experience is so similar to my own. I was finally diagnosed (15 months ago) at the age of 43 with EDS type 3 by Dr Alan Hakim, a specialist in Hypermobility. The diagnosis was a huge relief, finally I had the reason for all my strange symptoms!
    Like you I have the horrid suppository memories as a small child. I was also always doing backbends in the playground and couldn’t understand why other kids didn’t do them!
    I finally found out about EDS through an Aspergers blog. My son is a diagnosed Aspie and I have lots of symptoms myself. There is a link between EDS and Autism. I began researching online and like you had a watershed moment. I decided to take myself to the best specialist I could find to confirm what I already really knew.
    I have never really suffered from headaches but just recently I’ve been getting a lot. They feel like tension headaches and it seems to be around my eyebrow area. I thought they were perhaps hormonal at first as they seemed to happen around my ‘time of the month’ but now they are happening more frequently.
    One thought about your cough, have you ruled out GERD? That is common in EDSers. Before I started on omeprazole I had a continuous dry cough, it was the stomach acid irritating my trachea.
    Blogs like yours help me feel I am not alone. Thank you!

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    1. Jak Post author

      Hi Melissa

      Thanks for taking the time to comment but sorry to hear you’ve joined the EDS gang. It’s such a relief to finally get a diagnosis though isn’t it? You are spot on – my cough was down to GERD. It was silent GERD initially, which is why we didn’t know what was going on, but now I have awful heartburn symptoms. Sadly due to my mast cell disease I’m allergic to all the drugs used to control stomach acid so it’s a real problem for me. Glad you’ve found the blog helpful.

      Jak x

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      1. bendyaspie

        I hadn’t read all the other comments on the thread and now see that you had mentioned GERD. I’m sorry you can’t take medication for it. Did you try omeprazole? Do you mind me asking what sort of reaction you had to it? I sometimes wonder if it’s causing me problems. I feel rubbish most of the time anyway so difficult to pinpoint the causes sometimes!

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  12. Syd

    This sounds like me apart from the pain in the morning.
    I just found out this was a thing as my two year got told she had it.
    I thought most of the pics you put up on can do and I thought it was normal. I carnt do the elbows though bit my shoulder blades pop out.
    I have questioned if I attually have me or fatigue syndrome. On the more mild sence.
    Do they come hand on hand?
    I suffered from broccolituse (sorry carnt spell ) all my childhood pritty much all year.
    Maybe this was a separate issue?
    Thank you for your blog.

    As for the backward bends that made me popular at pymary school. And my toes the all bend upwards from the 1st joints are a good party trick. I am 31 and I have only found this out two months ago. Lol

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    1. Jak Post author

      Hi Syd

      Glad you’ve found my blog helpful but sorry to hear that both you and your child are in the EDS club. Very unusual for a 2 year old to be diagnosed as most children are very flexible, so your daughter must have other issues which point towards EDS I’m assuming.

      Fatigue does go hand in hand with EDS. ME/CFS is a totally separate illness – feeling ill and fluey like you have a virus after activity is the main feature, rather than feeling tired all the time. People with ME/CFS also have other signs of immune activation, like constant sore throats.

      Allergies also tend to go hand in hand with EDS, so maybe your broncholitis was an allergy to something like the house dust mite? My brother had that as a child, but he did grow out of it. He has other allergies though, like to dogs and horses. I’m allergic to Birch pollen and dogs (though I still own one!).

      Jak x

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  13. Tracy Gilster

    Hi, it’s amazing what you find when you start the self diagnosis when no one is seeing the bigger picture for you. I can relate to most of your pictures… I would presume there are varying degrees for most people. I was born with a club foot, have been reasonably flexible most of my life, my big claim to fame was being able to touch my nose with my tongue! My feet and hips are creating the majority of my problems right now, tore both hip labrums with repair, having second bunion surgery due to fallen arches weight bearing. Ironically I have been reading the book by DrAfrin, about MCAS, my sister in law gave it to me as she saw many signs in me before I did. I just hope I can find some answers as I am so tired of being tired and feeling crazy. I will follow this blog and know that I am not alone. Thank you

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    1. Jak Post author

      Hi Tracy

      I was 42 when I realized I had EDS from reading about the symptoms online. My GP had never heard of it but was happy to refer me to a rheumatologist I knew had special knowledge of EDS. Lots of people aren’t diagnosed until later in life as doctors just don’t look for this disease.

      I really hope you can find a specialist and finally get a proper diagnosis. It might not be curable but the validation that there is actually something wrong was huge for me and really helped in getting the management advice and support I badly needed.

      Jak x

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  14. gillsnatter

    I’m only just realising that I might very well have EDS. I’m 45 soon and was diagnosed with Fibromyalgia 3 years ago, blamed on a violent mugging in London. There is a lot more to say but I can’t possibly tell you it all.. but I’ll say that although EDS kept popping up in my search for an answer, I dismissed it, but recently realise I was too quick to do that. So I’ll just say thank you for this post – it’s one more confirmation I need to be taken seriously! Off I go to my GP once more, as I cannot live with this pain (etc….!!) – it’s destroying my life, happiness, ambitions – big time.
    Take care xx Thank you again!

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    1. Jak Post author

      Hi

      I’m so sorry to hear about your mugging – that must have been awful 😦 Stress can very much trigger a formerly stable EDS to go nuts, then of course take into account your age (many women have no problems until their forties, we can only assume due to declining hormones) and you have a perfect storm.

      I had a quick read of your blog and saw that a Rheumy had mentioned you were hypermobile previously but you thought he was wrong. Just remember that as we approach middle age we naturally stiffen up. If you were hypermobile as a child/teenager I’d definitely look more into EDS.

      Many people with EDS have previously been given diagnoses of Fibromyalgia due to the pain connection – people with EDS can have many very sore myofascial trigger points which are mistaken for the trigger points of FM. Another common misdiagnosis is Chronic Fatigue syndrome, as people with EDS can have profound fatigue. Bear in mind though that having EDS doesn’t rule out other diseases, in fact it can pre-dispose you to other diseases! Although I have EDS I absolutely also have M.E., the hallmark symptom of which is post-exertional *malaise* not fatigue, ie feeling polaxed by flu symptoms after any kind of mental or physical exertion. Then of course there are diseases like complex regional pain syndrome (which again can often be brought on by trauma) and dysautonomias which can also be thrown in the mix.

      Good luck with your diagnosis. If you can, try for a referral to the hypermobility unit at UCLH being as though you live near London. Or if you don’t want to wait and can afford to go privately the same doctors work for the hypermobility unit at St John and Elizabeth http://www.thehypermobilityunit.org.uk/ Best people in the whole country to see IMHO.

      Jak x

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      1. gillsnatter

        Hi Jak, thanks for replying with such useful info. Very much appreciated.
        Yes I realise now the 2nd Rhemy was correct about the hypermobility (I must learn to trust more! hmmm) since just last week a colleague (a Pilates instructor) got me to show her some ‘moves’ after I mentioned to her that every joint began clicking about a year ago – over night, all of them. I was quite flexible up until a few years ago (there’s nothing like whiplash from a yank on your bag, and other injuries from a mugging since that bag wasn’t coming off easily, plus weight gain, to make you less mobile!) – but yes it’d be less so now I’m older anyway – and yes agree about hormones too! I’ve never been obvious-to-others flexible though – my thumb never reached my arm etc. I literally started to look at EDS again last week after previously discounting it due mainly to the lack of hypermobility – since that was key!

        Aside from this newly accepted revelation…
        Under my neuro, I’m due for a spinal MRI and an EMG to look for MS/peripheral neuropathy or rule out certain other neuro issues. I can see now that it may be wasted resources, as I should have a standing MRI, but I’m yet to even discuss this with my GP. But now I’m back taking HMS/EDS seriously as an option, I’ve discovered it would explain a multitude of events/symptoms, such as (this is just a handful of many more):
        -an epidural not taking full effect for one of my c-sections back in 1993 (the next c-section I had a spinal block and the next a spinal/epidural combi, so have plenty to compare the first time to, to know what I’m talking about)
        -the anesthesia eye drops not working for my laser eye correction back 12 yrs ago (I’d say they didn’t work at all…. and when your eyes are under the knife and you are full-on traumatised, you say nothing mid-op! I couldn’t even get my act together when they moved from one eye to the next!)
        – My father’s brother and their cousin (double whammy) both died of brain haemorrages in their late 20’s… this is possibly unrelated, but wow, two of them, and with no one in my family having any insight into their post mortems – crazy?? – it’s a risk with one type of EDS… this is the one reason I feel I must rush for a diagnosis?
        – My youngest daughter had minor surgery on her back – but it resulted in severe scar issues not seen before by the surgeon at post-op check… maybe that can now be explained. All my girls have hypermobility, for sure, and other problems like me such as allergies, minor rashes, fatigue. I take antihistamines every single day, every season.
        – My focal seizures diagnosed just under a year ago… EDS can absolutely cause that
        – the list goes on and on and on, with current symptoms of mine screaming at me. There are some which lots of people have anyway but are listed as symptoms of EDS such as skin tags, mild sunken chest (never noticed it until a chest x-ray last year due to suspected something or other), I have endless ankle sprains (currently strapped up), flat feet (despite looking like there’s an arch before standing – I literally had no idea I had flat feet until my friend said this year!), breathlessness (goes with fatigue in my head – could be wrong), and I sleep about 10 hours a night most nights, exhausted, but not enough for CFS apparently (and the malaise you talk of – yes I get that but not all the time – evenings are worst where I honestly feel like I’m dying, about to die, may not wake in the morning? ). Honestly, the list goes on and on and every single thing fits.

        In reference to my mistrust of the two Rhemys, I have to say I did present without particular symptoms back then, but with many others like ear infections and the leg lump (which is back plus a couple more smaller ones) – and I did sort of accept the FMS, mostly as it was better than nothing! Maybe I have that as well. If could go back 2 years and stay there I would in a shot. I had good days and bad. Now, it’s all bad days. My brain is working better though – anti-epilepsy meds are the reason I can concentrate again at work 3 days a week! Hurrah for them – and ending on a high note!!! 🙂
        I’ve gone on, but thank you. Others may read this one day – it may help.
        I have an unpublished blog for my family to see how I believe I have my answer, but I won’t publish it until I know…

        One can never know, however, until someone out there with a medical degree looks into your body with an open mind and agrees with you!

        Onwards and upwards… at least as far as knowledge and managing our illnesses goes 🙂

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  15. martoka

    Hi , i can do Reverse Namaskar Sign , i have hypermobile finger and toes and flat feet, i have stretch mark , im skinny and tall BUT:

    – i do a skin biopsy, my collagen is normal (fibrilin too)
    – I do a dosage of tryptase, its normal too

    I cant have ehler danlos right ?

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    1. Jak Post author

      Biopsy is usually normal in the hypermobile and classical types of EDS, so yes you can have ‘normal’ collagen and still have EDS.

      Not everyone with EDS will have mast cell disease, though it is more common than in the healthy population. Tryptase is normal in Mast Cell Activation Disorder, unless you are in the middle of a reaction. This normal tryptase, despite having symptoms of mast cell activation, is what distinguishes MCAD from Mastocytosis.

      Hope that helps.
      Jak

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  16. martoka

    But i have to be sure i havnt ehler danlos syndrom, what can i do ? biopsy of intestinale ? biopsy of stomach ? ,i know the diagnostic of this disease is only clinical but there are some biological feature ( like mastocytos ) in EDS, i dont want to have this please help me , i have to be sure

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    1. Jak Post author

      As I said, they are two different diseases – you can have EDS without MCAD, MCAD without EDS, or both, or neither. None of us want to have either of these diseases, but at least if you *do* find out you are ill you can begin proper treatment, so I totally understand your desperation to know. Unfortunately diagnosis can be very difficult, for example here in Britain getting an MCAD diagnosis is almost impossible.

      I’m not a medical professional and health care differs depending on which country you live in (I’m in the UK) but if it were me I’d research and find some specialist doctors – if you’re in America they are there though you might have to travel to find them (I travelled 100 miles for my EDS diagnosis and 300 miles for my MCAD diagnosis).

      You need an EDS specialist (here in the UK they are usually Rheumatologists with a special interest in connective tissue disorders, but I don’t know about other countries) who will take a full history, look at your hypermobility, skin and other symptoms and make a proper clinical assessment. As you say, there are *no* firm tests for the hypermobile form of EDS (though there are genetic tests for other types of EDS) and it is a diagnosis of exclusion.

      You don’t mention any symptoms of mast cell activation (like anaphylaxis, hives, flushing) but if you do have these kinds of symptoms you also need to find a mast cell specialist (which are rare but again there are more of them in America than anywhere else), who will test *properly* for mast cell mediators, eg. heparin, Chromoglanin A, leukotrienes, histamine etc.

      I’m afraid that’s all I can suggest and wish you lots of luck in finding out the cause of your symptoms.

      Jak

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  17. Léna

    Hello,

    we are two Swiss students in physiotherapy, and we are writing our Bachelor Thesis on the EDS syndrome hypermobility type. Therefore, we would like to ask you if you would allow us to use your very explicit and interesting pictures in our work?

    Thanks in advance and congratulations for your helpful blog.
    Good luck,

    Léna

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