You Can Dislocate a Rib By Sneezing; My Life With Ehlers Danlos Syndrome

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People with EDS are sometimes called Zebras. 

Fuck that. I’m a goddamn magical unicorn. 

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I’ve talked about celiac disease before. It’s annoying but ultimately not the worst thing that I have to deal with. It’s come up before because we talk about the fact that no, gluten isn’t going to make my dick fly off.

(Because my dick is in a drawer next to the bed. Thanks Hitachi corporation!).

I don’t talk about Ehlers Danlos as much because, first, it’s really personal and I don’t want pity for what I’m going through. I just want better medical care. Second, the thought that someone else is in chronic pain makes people uncomfortable. And then it makes people ask questions.

And then it makes people, even science minded people, skeptical. Not capital S, Skepticism-GMOs are fine-vaccines are good for you-shut up and take your science- Skeptical. But skeptical like “you cannot possibly have all this shit wrong with you” skeptical.

Trust me, I prod my doctor about that every time I’m in for my more-frequent-than-I-would-prefer doctor’s appointments.

“I can’t possibly have all this shit wrong with me.”

I am sure that, when they were passing out bodies, I got a genetic lemon and somebody fucked up. Unfortunately, unlike an honest car dealership (lulz), I can’t trade this one in, and the best that I have to deal with is whatever modern medicine will hand me. So strap in, have a drink, I’ll try to make you comfortable.

“You’re not supposed to bend that way.”

It started when I was stretching for volleyball when I was a kid. Everyone else would pull their arms over their head and stretch like a normal human being. A little bit of a tricep and lat stretch. My shoulder blade, with a normal pulling motion, pulled halfway out of the socket. 

My friends thought it was alternately gross or a neat party trick. By high school, my left shoulder did a weird popping motion. With all the volleyball I played, and the fact that I could spike with both arms, I eventually fucked up my left shoulder with damage to all of my glenohumeral ligaments and my labrum. Over the course of six years starting my junior year of college, I needed three shoulder operations. 

I just have a bad shoulder, right?

Up came the pain.

I’ve talked about my headache before. It was the first big sign that this was more than a shoulder I screwed up from one too many dives on the high school volleyball court. Who the fuck gets a permanent headache? It’s not normal.

The first week of it you think… this is going to go away. I’m overtired. I’m dehydrated. MAYBE I DID LOOK TOO CLOSE TO THE SCREEN AT WORK. GET ME A HIGH DEF SCREEN!

The second week, you’re alternating between denial and bargaining. This is not real pain. I was hallucinating the last two weeks. I’m not really FUCK WHY IS IT BACK AGAIN WHY WHY WHY WHAT IN GOD’S NAME DID I DO TO DESERVE THIS I’LL DO ANYTHING TO MAKE THE PAIN SHTAAAAP!

By month two, I was damn near losing my mind. I was wrongly diagnosed at first with cluster headaches. It was a constant dull ache, a stabbing pain centered around my left eye that would flare up about 60 times a day for anywhere from 30 seconds to several minutes. It was coupled with tearing, left nostril congestion, and the left side of my face would droop like I had a stroke. 

The pain is similar in terms of intensity to cluster headaches, but clusters last for an hour or so. They’re also known to be seasonal, attacking some sufferers at the same time of day or year on the clock. They don’t come and go off and on all day every day. 

As bad as it was for me, I was living with my mother at the time. I’d moved home after ending one job a few states away and starting one job locally, and wanted to save some money. Then I stayed at home for longer because we didn’t know if I had… a brain tumor? MS? Squirrel? And my mother, saint that she is, felt helpless while she watched me in pain every day. At the same time, my brother was suffering with lupus across the country. Whatever my mother was going through watching it all, she always smiled, always had a hug. One of few things that we found helped was caffeine. It at least made the headaches a little less evil. I was working second shift at my lab, and she tended to wake up before me and make coffee. 

There are little things in life that you might not think matter, but curling up on the couch clutching a cup of coffee that my Mom had used to nurse some life back into me when I was just trying to not be miserable? It got me through some days. 

As much as I tell people now not to try to be their own doctor, I was desperate. I started researching headache variants online because the rare headaches seemed to be a blind spot, even amongst neurologists. An average neurologist, even specializing in headaches, can go an entire career without seeing a headache variant like mine. I went through eight neurologists before finding one who specialized in craniofacial pain. Some doctors were dismissive. One tried to take me off a medication that was working solely because she thought I was “enjoying the weight loss side effect.” It was true, I wasn’t against the side effect, but I was happier than anything that it was making the pain not be a thing. 

Unfortunately, it made me understand why people turn to alternative medicine. We still don’t have a perfect understanding of some of the more difficult to treat conditions, and desperation and frustration will make even science minded people leave the system and seek other answers. I went organic. And vegan. And anti-GMO.

(You guys know the punchline to that though, right?)

Depending on the doctor I go to, I still have doctors who diagnose me with a different headache condition separate from EDS. The closest condition they can figure is that it’s a trigeminal nerve headache that’s related to Ehlers Danlos or that it’s SUNCT Syndrome. Whatever you call it, it’s not a migraine. I’m not light/sound sensitive, it never makes me nauseous, and man, without the medication that they took a year to figure out, I’d be in such intense pain that I wouldn’t be able to function.

But I thought that was the end of the story. I thought… I’m in my late-twenties. I’ve already been through enough of stupid painful bullshit for a lifetime. Can I go through the next thirty-ish years of shit not hurting? That’s a normal age for stuff to start breaking down, 60ish. I could live with that. Is there a goat somewhere that I can sacrifice to make that be a thing?

Hip pain, scoliosis, and rip dislocations, oh my!

I ran a few marathons. Because I’m an idiot. And because one of the few things that made my head feel better was working out. 

(Like I said, it was definitely not a migraine).

But, the downside to this is that if you have already-bad-joints, you will fuck them up more without knowing it. 

I did something to my left hip on a seven mile training run. My doctor, kind as he was, didn’t see anything in it on the x-rays or initial MRI. So I ran two marathons. During the time that I was marathon training, I also had a car accident. 

They spotted scoliosis on my spinal x-ray. Huh. That was new.

But but but… I CAN’T HAVE ALL THIS SHIT WRONG WITH ME. I’M A GODDAMN MARATHONER. THE MILES COWER BEFORE ME.

(I sound like a really serious scientist right now, amirite?)

After I ran my last marathon, I took time off to finally investigate why it felt like an angry honey badger decided my left hip was his hidey hole. Finally on an MRI with contrast, they spotted a torn labrum. In the post-op x-rays, they saw that my hip sockets are mal-formed, and I’m going to need a replacement or a restructuring by the time I’m 50.

And then I dislocated my first rib. At which point I thought I should have started asking questions about a decade ago. 

Ehlers Danlos Syndrome, the key to life, the universe and everything. 

So I had a few friends with Ehlers Danlos who said “why the fuck haven’t you been tested for Ehlers Danlos because no really why the fuck?”

That sounded medical, I’m sure. 

But I had the symptoms. And I’d moved at this point enough times that my doctors could have missed over a decade of medical history. Between work and school, I’d lived in four states and two countries. Even calling every doctor’s offices that I’d visited in every state and country and requesting all my old medical records, it would be no guarantee that my new doctor would just magically see a pattern. So I requested an appointment with a rheumatologist and said “will you just take a look at my joints?”

At the beginning of the appointment, he said “there’s no reason to suspect that you have Ehlers Danlos,” because how many doctors love self diagnosis? About as many as comics who enjoy being told “hey, that’s funny, you should use that in your act.” 

(Are you new? The number hovers at around zero).

It’s understandable, because when you hit Google MD, you tell it that your back hurts and it turns out that you have testicular cancer even if you don’t have testiculars.

At the end of the appointment, after doing a full joint exam, seeing the range of flexibility, my flat feet (that I didn’t even know was a symptom), scoliosis, and history of dislocations, he was giving me instructions on how to handle life with Ehlers Danlos. 

Finally. There’s at least a reason for life the universe, and everything. I had a 42.

Where does it hurt?

I still have to manage my headache pain with medication. And some days my shoulder hurts because if you have three operations worth of scar tissue in a joint, it’s surprising if it doesn’t hurt. The scoliosis isn’t terrible, but it doesn’t exactly tickle.

Exercise is rarely what does damage. Most recently I dislocated a rib so severely in my back that I’m on a round of steroids. This is the second time this has happened. It wasn’t from heavy breathing from exercising (because at least the breathing from exercising is rhythmic and steady). It wasn’t from being hit or bumping myself. 

It was from a really hard sneeze. 

I’ve been in more pain this last week than I was after each of my shoulder operations. 

I made a video talking about it this week to address why I haven’t been writing as much lately. It’s difficult to focus when I’m in severe pain. I’m on a round of prednisone for the inflammation and oh man, they do make you hyper (as was evidenced by the rapid fire talking in the video). I want to clean everything in my house, run a marathon, cook everything in the kitchen, record a new video every hour, get a pet dinosaur, get six pet dinosaurs, give Science Dog a bath, and did I mention… 

There are negative side effects too.

Like bloating. And weight gain. And getting chipmunk cheeks. And the day after you get off of them, you feel like it’s the worst caffeine crash of your goddamn life. If you’re awake for four hours, it’s a lot. 

It already feels a lot better than it did a few days ago. It’s a good start. But steroids every time something hurts is not an option. It suppresses the immune system, thins the bones, and did I mention weight gain? As much as I’m capable of loving my body, I don’t want to buy new clothes literally every time I sneeze. Also, if I have a disorder that causes joint pain and dislocation, weight gain can easily exacerbate joint pain.

I’m being very careful about my diet lately and counting macros like a fiend. And when my joints allow, I exercise. More yoga, more cycling. As much as it pains me mentally, less running. 

What are the impacts on the life of someone with this disorder?

For people without a chronic condition, pain is a sign that something is severely wrong. For someone with a condition, it’s just Tuesday. 

It’s different for everyone. This may surprise you if you don’t know anyone with EDS, but I have a mild/moderate case. I’ve seen colleagues need to take an entire year off from work to get their spine fused. It can be a nasty bugger. It leaves people in chronic pain. 

Right now people are talking a lot about opiate pain medication in the media. There’s a lot of misunderstanding about their role in the pain sphere. Is there a role for these medications? Absolutely. Are they overprescribed sometimes? Absolutely. 

I am rarely on opiate pain medications. I’ve taken them this week because, when it literally hurts to inhale, that’s a good litmus for taking strong pain meds. Most of the time my various little aches and pains are nipped by anti-inflammatories. I know people with EDS who need opiates on a regular basis and handle them under doctor supervision and monitoring with regular drug testing to prevent doctor shopping and other types of abuses, and I know people with EDS who don’t need them at all who have similar physical problems. A few years ago, pre-headaches, I probably had a lower pain tolerance. Being in chronic pain changes how you handle it. Now, even when I’m in severe pain, I’ll go for hours before I even reach for an anti-inflammatory, thinking “this will pass.” 

The handful of little problems that you don’t think of are the worst part. I’ve had to move for work a few times, and it’s landed me in different medical systems. If you don’t have any conditions, all you think is “will my doctor warm the stethoscope before applying it to my back?” If you have a handful of conditions to manage, it’s anxiety provoking.

Will the doctor try to change my medications that are working well?

Will they try to re-diagnose me?

Will they take my conditions seriously?

When last I changed systems, I got a great neurologist. The time before that, the neuro tried suggesting four different new meds before I said “no, really, the one I’m on is great, I’m not here for a ninth opinion, I’m here because I moved across the country.” The rheumatologist in my new system had never treated for Ehlers Danlos Syndrome and said that rheumatologists didn’t treat Ehlers Danlos.

That thing I said earlier about understanding why people seek out alternative medicine? Yeah. 

Where do I go from here?

The thing with a chronic condition is that there’s no cure. But there’s good news and it has nothing to do with my Geico payment.

As much as I could sit here and whine about it (which, I apologize if this writing has come across as whiny), it’s just life. Most of the time, I’m fine. This is the first time in a while that I’ve been incapacitated by something, and it’s reminded me that this disorder is much more than taking a few pills every morning. Average day, I wake up, take a few pills, and get on with my day. 

New therapies are coming out all the time for EDS, and with more awareness, more doctors are going to get involved in research. It’s generally been defined as a rare disease, but rates of diagnosis have historically been low because of a lack of awareness even within the medical community. With more awareness will come more accurate diagnosis and better treatment plans both to prevent pain and help care for it, hopefully without long term use of addictive medications. 

If you have a friend in your life with EDS, listen to them. The suffering is real, and it does suck to not know what part of your body is going to hurt next. From sneezing.

As for me? Don’t worry about me. That job is for my doctors and for researchers. And my family and loved ones who are far too kind to a loud mouth jackass like me, but the worry is not for you, the very kind folks across the internet who come to my website generally to be amused by my rantings about science. And as we’ve seen over the long arc of history, things are always getting better in medicine. And it’s going to get better.

And I’m going to be a happy unicorn. Or zebra. Whatever. 

 

-SciBabe

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68 Comments

  1. That is one thing that healthy people don’t get, a chronic condition is just that – chronic. As in forever.
    And as a chronic pain patient, I’ll say this, chronic pain fucking sucks. I wouldn’t wish it even on a terrorist.
    Still, with my various conditions, at least I don’t have EDS and to be honest, I’m thankful for that. It’s bad enough to have had someone urinate in my gene pool, I have no desire to have that which most assuredly not a Hershey bar at the bottom of that gene pool as well.
    Best wishes and I hope that you feel better soon.

  2. The virtuoso violinist Paganini is believed by some to have had this. So, if it makes you feel any better, you’re in famous company.

  3. Got to admire your attitude. Ever considered marijuana in some form to ease the effects of the meds. Could be an interesting story in its own right.

  4. Thank you for putting EDS out there. It’s so hard to find the right medical team. The internet gave us our only leads as to why my 17 year old was in constant pain and was fainting every day. And now I know why I have the joints of an 80 year old woman at 44. Yay for zebra striped happy unicorns!

  5. As someone who is generally healthy (other than the occasional migraine for which I have triptans – yay for new-ish non-opioid painkillers!), I can rather well relate to your statement that for most people, pain = something is drastically wrong.

    And on that note, I sincerely hope that doctors and researchers manage to find new and better treatments, because, oh, that sounds painful and difficult to live with. You manage admirably.

  6. I love this. I have fibromyalgia/chronic fatigue. I realize my disease is not degenerative, but it’s always therapeutic to hear about people going through similar struggles. I have a dear friend who has EDS and is an incredible violinist/musician. I know how intrusive this disease can be in someone’s life. Thank you for sharing, and I wish you all the best!

  7. It’s understandable, because when you hit Google MD, you tell it that your back hurts and it turns out that you have testicular cancer even if you don’t have testiculars.

    That is one of the best phrases of the week!

    SciBabe, thanks for sharing about your life with EDS. Knowing someone you admire struggles too, means a lot. Hang in there!

  8. Your babeness and smartality gives your readers and oglers laughter and brain exercise. We thank you. This, latest, heartfelt essay gave us tears. We’d gladly share your pain, if that was a thing. Thank you for your honesty. We learn, and we become better.

  9. Let me guess – the awesome med with weight loss side effect: Topomax. Or as we liked to call it “dopamax” for the brain numbing dopey feeling.

    I went to a rheumatologist and she pointed out all the symptoms of EDS in me: hyper mobility, high palate, joint and ligament pain, etc and never actually said EDS and it’s about as well studied as fibromyalgia (something she did diagnose me with based on just the trigger points.) I

    was a great ballerina with amazing flexibility and turnout until my hips and feet gave up. THANKS EDS. :/

  10. My 42 is called PCOS. Surely less invalidating but still it forces you to live with chronic pain. And yes I am a MD and yes I went looking for alternative medicine because let’s talk clear, if it’s not cancer and if it’s not putting your life at risk then people don’t really get why you are complaining. Today I’ve found myself telling my husband: I have pelvic pain almost every day, but I don’t tell it just because complaining won’t change the situation. And because in the long term my personal belief is that people start to not believe you anymore. Bottom line: I feel you and understand why giving explanation and answering questions is painful too.. Kisses from Italy

    • This is part of the reason I don’t complain about my pain. It doesn’t change it, it just makes people around you not sure how to react. They treat you like you’re broken.

      That’s for my doctor to do.

      I only tell people if I’m *really* hurting if it’s interfering with my ability to do things. I go on rock climbing trips with my boyfriend and our friends, and sometimes I just can’t climb because things are hurting. Boyfriend knows that it’s because things hurt, but I think some of his friends think I’m lazy. I’d rather them think I’m lazy than think I’m in pain.

      How sad is that?

  11. Indeed, doctors can be frustrating and dismissive. I suffered dizzy spells that would last for minutes to weeks for seven years before I found a doctor that listened to what I was saying and diagnosed me with Meniere’s. All the time it was getting progressively worse and more frequent. The ENT I’d been seeing told me it was psychosomatic and that the medicine I was on which was my only sanctuary was the cause. The relief at having the diagnosis itself was an amazing feeling. My life had been reaching the point where I was no longer able to function on a daily basis. Thankfully the diagnosis also brought options, and though they’re not perfect solutions, it makes my condition manageable, and I’m more fortunate than many. Thanks for sharing!

  12. Are you familiar with the Cusack Protocol? I cannot endorse it from personal experience as I have just started, however alot of people seem to be getting good results.

  13. You are in great company or at least mine. I’m a moderate to severe zebra, the suck is real. Fight on unicorn!

  14. I’m so glad to find someone who has this! I just got the diagnosis last week. I was like oooh so I’m not just aging really terribly, everything hurts for a reason! The geneticist diagnosed it and the rheumatologist I saw the week before didn’t once mention it! Keep writing I love it!

  15. i feel for you and appreciate you. hope things improve atleast day to day, my wife and i both live in the wake up take your meds and go about your day. Feel better!

  16. Dear heavens, you are my literal body twin. First major joint operation was torn labrum in hip, then frozen shoulder (which now it just kind of likes to dangle out of my socket), and CONSTANT 1-3rd rib subluxations. Everything you said was like an echo my brain.
    Sorry that you have to deal with this too!
    Have you heard of the muldowney protocol? It’s a full body physical therapy joint stabilization program. I only started in november, so I don’t yet know long term outcome, but keep slogging at it hoping for it to reduce the # of major rib events!

  17. While I don’t have EDS, your comments about dealing with headaches resonates with me. I have been dealing with them my entire life and I am now in my late 20s. Over the last year or so they progressed to being frequent to daily and so I went to see a new neurologist that at first wanted me to just “change my view on life” and that was supposed to fix things. I had to tell him that was not really enough. So now I am on Topomax and just finishing the dose increase to see if it will be enough to not have all day everyday head pain. Unfortunately I still don’t have a cause for the headaches, but at least some of them might be gone.

    • I had to get a doctor to increase my topamax several times and take it with indocin until they were managed. Taking it every day is fine for me and has been fine for a lot of people. I have to get a liver enzyme check annually. I’ve been on it for six years now and I’m fine. I don’t drink just to keep my liver happy, but I really didn’t drink much before anyway.

      Advocate for yourself. *hugs*

  18. When I read “I can’t possibly have all this shit wrong with me” I nearly cried. I’m 24. I have had two knee surgeries to fix developmental problems (my tibial tuburcle was anchored laterally, which messed everything else in my knees up) and one more recently to fix an injury that may have slipped under the radar five years ago when I had my last surgery. I have a life threatening dairy allergy that I had from birth until age three; it disappeared for twelve years AND THEN CAME BACK, WORSE (Epipen severe, I go into anaphylaxsis almost immediately after ingesting trace amounts of any dairy product or derivative, I used to be hospitalized one-three times per year because I didn’t want it to rule my life and people mess up, all the time). I had debilitating dysmennhorea from my first menses until I finally caved and got on hormonal birth control a year ago (can’t take the pill, most pills in general have dairy in them, THE pill even more so). I have severe heartburn that my doctor recently poo-pooed even though I get it almost daily and woke up choking on stomach acid recently. I also have mild asthma and pretty severe bunions even though I never even wore shoes as a child.
    My brother is worse off, so I always thought I was doing alright, until I got out on my own and realized that most people aren’t basically just broken. It’s always kind of nice for me to read about other people’s medical nightmares though, it makes me feel less alone. Hang in there.

  19. Chronic pain–what a bummer!

    I watched someone suffering for over 45 years because last year I lost my husband of 45 years to lupus, with added complications of epilepsy. I blame most of his chronic diseases on his 2 grandfathers–one with epilepsy and the other with undiagnosed lupus (after all, 80% of lupus cases are female, no?)

    You go,Girl!

  20. Before today, I’d never even heard of EDS.
    I thought having RA that took 2 years to diagnose was bad, but I’ve never had to deal with injuries from sneezing.
    “I can’t possibly have all this shit wrong with me.” Is something I’ve said many times.

    Hope you’re breathing easier soon.

  21. Fellow zebra/magical goddamn unicorn here – I had a headache (still do but it’s less severe now) for six years. I had severe brainstem compression due to Chiari, causing neurally mediated hypotension and neurogenic bladder. And I was just dx’d at UVA with intracranial venous stenosis secondary to EDS.

    Have you been evaluated for intracranial venous stenosis and Chiari malformation? Both are suspected, though unconfirmed, to be correlated with Ehlers-Danlos Syndrome, especially hypermobility type. It’s sort of a newer area of research. Anyways, food for thought. A headache for any number of years is a bitch.

  22. I’ve gone through a long 3 year, or all my life of weird unexplained pain, to finally get a diagnosis of EDS right before my 26th birthday. Right when they can’t help me because I got kicked off my parents insurance. But at least I know what it is. Thanks for sharing your experience when it’s not that easy to.

  23. I’ve gone through a long 3 year, or all my life of weird unexplained pain, to finally get a diagnosis of EDS right before my 26th birthday. Right when they can’t help me because I got kicked off my parents insurance. But at least I know what it is. Thanks for sharing your experience when it’s not that easy to.

  24. I can so relate to this! I have EDS-II but with 9/9 hypermobility. I’m finally on a medication regimen that eases some of the agony (Milnacipran + Amantadine) but there is always breakthrough pain. I’ve been a migraine sufferer for over 25yr but I’m still struggling with head pain, going to look into SUNCT, never heard of it, thank you!!!

  25. I have Ehlers danlos, pots, gerd and all the fun stuff that comes with it as well. You did a great job explaining it and I feel you. Slipped a rib getting out of bed the other day. Look into debra Cusacks protocol to help with the symptoms. It uses the polysaccharides in aloe to help with the connective tissue. There is a Facebook group as well.

    • I don’t have POTS, I actually have a really low heart rate. Right now we’re looking in to chiari malformation because symptoms are starting to resemble it. We’ll see. *hugs*

  26. I’m not a doctor but I do play one on the internet. I even diagnosed my ex’s Still’s disease before her rheumatologist did. There are a couple of things I would recommend that really can’t hurt. First, switch to espresso. If coffee works, espresso works better. Second, take the supplement astaxanthin, it’s the most potent anti-oxidant there is and since you have an inflammation issue, it might help and third, medical marijuana. Go to one of the cool states like Washington and get a scrip for it. Good luck. Your shit sucks but maybe you can manage it.

    • It comes from an old saying… when you hear hoofbeats, think horses, not zebras.” It’s to make doctors not think of the nuttiest, most screwed up explanation for something.

      However, with EDS… we are the zebras.

      (Or unicorns).

  27. Sounds… familiar. Coughing is worse than sneezing for me and my ribs. Joys of Ehlers Danlos. I did self diagnose this and requested a geneticist appointment when I was tired of getting shrugs. It worked out for me thankfully.

    I’m also in science and have dislocated my thumb from pipetting, which is a joy when you have 50 more tubes to fill and a deadline, plus no minions around for help. I’ve never been so grateful to be ambidextrous as that point. I will say it makes for some amusing situations though. Bad ankle? Time to walk like a zombie!

  28. You don’t have to answer that. After I hit post the screen refreshed an lo and behold there was my answer right above my question.

  29. Fellow EDS zebra here! My brand of EDS issues are primarily tendinitis-like injuries (that recur easily and heal absurdly slowly) and POTS. I’m effectively disabled yet don’t have any of the dislocation issues that so many with EDS do. Not yet, anyway! I offer gentle hugs and wish you the best.

    I realize that you probably already know this, since it is fairly common among EDS research recommendations, but perhaps it might be worth mentioning for anyone else reading who doesn’t know: long-term steroids have a tendency to break down collagen and so can make joint issues with EDS worse. Yet of course short term use can be highly beneficial because of the anti-inflammatory effect. It’s a balancing act, and I am in no way suggesting “you must get off of your steroids!” because you know your situation best. I just thought it would be something to mention for other people’s sake. Just another way in which EDS makes us special.

  30. I am sitting in the OR waiting room as I read this post. My wife who has degenerative disc disease and a host of other chronic pain conditions and who has been fighting like an Amazon warrior these past 6 months just had surgery to help alleviate the pain.

    The procedure was to last about an hour and a half and was nearly three and a half because of the widespread issues to be addressed.

    Pain is really tough to deal with especially since it is invisible. Some people think you are a junkie when the pain is so bad you actually do go to see a doc.

    I was kicked out of an ER because of my back problems. I have a fun condition where higher derivatives of morphine make me stop breathing. So no “good” painkillers for me. Best I can handle is tramadol, codeine or morphine. so when I informed the staff at the ER of this they kicked me out. Then told my Primary that they treated me and I was fine when I left. (I told the NP to go screw herself as my wife held me up to walk out).

    Stay strong and be your own advocate!

  31. Heck, tell them! You don’t tell them you are in pain. Just tell them that it’s a condition, it’s effecting you today, and you can’t do “whatever” because of it today. Your condition is real, and you are tough as nails, and they don’t know what pushing hard is. You’ve run 3 marathons… you’ve proven yourself. You can show them your daily meds if they don’t believe you. If that’s enough… find some new friends. Sounds like you are afraid to find out they might be assholes.

  32. Me too! Ten years ago, a neurologist told me “you’ll be fine, it isn’t serious” and sent me home. I looked what diagnostic code he entered and checked it when I got home. Conversion disorder. Yes, my hearing goes out and I get wild vertigo because my parents didn’t hug me enough. Asshole. It was nine years before I finally got the courage to bring it up again to a new doctor.

  33. Hello fellow zebra/magical unicorn! I have EDS as well and have struggled with debilitating headaches on and off for years. I know others have mentioned Chiari, but if you can find a neurosurgeon who can evaluate you for AAI (atlanto-axial instability) and/or CCI (cervio-cranial instability), you should definitely consider looking into it. I discovered the most of my headaches are caused by AAI, which in my particular case means that if I turn my head too far in either direction, I dislocate my c-1/c-2 vertebrae and obviously that isn’t good.

    Anyway, lots of gentle hugs and best wishes!

  34. That phrase makes me so angry because dr’s forget the zebras (and unicorns) exist. A recent patient survey found that more than 95% of people with EDS were given psychogenic diagnoses first, so I appreciate you speaking out about your experiences!

    In the past few weeks I’ve dislocated my shoulder and twisted my ankle while sleeping. EDS is the gift that keeps giving, you never know what will be next!

  35. I was told that it gets better with age. And I have had less dislocations since I’ve turned 30. I count my rainbows, not my storms. There’s something about being able to out-yoga a tall, thin instructor when you’re 37 weeks pregnant.

  36. #15 Diane, this is the SciBabe’s blog. I can’t believe you’re even mentioning pseudoscientific “treatments” here. It’s disrespectful to post comments of a personal nature when you have no idea to whom you’re addressing them.

    Sorry, SciBabe. You are one of my heros, and now I have another reason to love you.

  37. I have a brilliant friend with severe EDS–she’s basically held together by mesh, and her arms have become so shortened by surgeries she can’t even clap her hands. Her partner (also brilliant) has OCD and Tourette’s. They both are highly successful businesswomen.
    They tell this joke about themselves when asked if they’d ever consider having a baby: “Probably not, because if my Tourette’s ever made me drop the baby, Kerry couldn’t catch it!”

  38. I’m sorry for you and hate me for thanking you if you want. Nothing puts being hospitalized and laided up for a week due to back problems into perspective live hearing how bad others can have it.

  39. Hi SciBabe,
    I didn’t know about EDS until I read your rant. (BTW, you are very convincing and articulate. Keep it up.) I have a suggestion for how to generate those endorphins in the absence of running: Have you tried swimming? It can be just as rewarding as running or cycling, but with less impact on the joints. To reap the full rewards of a Zen state of mind and body, all you need is access to a good lap pool at least 25 meters long, mastery of flip turns, and the coordination to breathe left and right every third stroke. A good swim coach, along with a little research, can teach you perfect form so all of your energy goes into maximum distance reward. Bonus: flip turns give you GREAT abs and open water distance workouts give you a marathon effect.

  40. My daughter does not appear to have EDS but has some of the conditions associated with it. She has suspected autonomic dysfunction, chronic headaches and confirmed severe gastroparesis. It has been very difficult to get to this point as most Drs early on considered an eating disorder or psychosomatic condition . We had to advocate for her constantly . The thought is it now might be autoimmune. Dealing with this on a daily basis is incredibly hard for her.

  41. I have fibromyalgia that gives me a constant headache, amongst other pains. The first neurologist I saw ran all the tests he could think of, but those tests don’t help since Fibro is kind of diagnosed by exclusion.

    Hope you figure out how to fix the “sneeze = pain” equation.

  42. Some people don’t understand pain is pathological and a medical condition. Are some people over prescribed pain meds? As you said “Absolutely.” But there are people (my patient’s included) who truly need them. It has a beginning, middle and end. Those who don’t suffer daily headaches (likes your’s truly) just don’t get that. Like you I’ve had chronic chronic conditions since I was a kid. Osgood-Schlatter bi-lateral severe (age 12), asthma (age 1 {double pneumonia aged 6 months}). My rescue inhaler is my best friend. ACL reconstruct aged 24 (knee replacement per my MD will be around age 50 {I’m 46 now}) and what appears to be ulcerative colitis or crohn’s (still in the differential diagnosis stage {wait 6-7 bowel movements per day, abdominal discomfort and blood aren’t a part of normal bowel health??) And don’t get me started on my wonderful allergies (parent’s thought moving from KY to FL was a good idea….not). Oh did I mention TMJ? And last but not least migraines (which my daughter {who has Hemiplegic and is being tried on propanolol by her neurologist} mother, and grandmother had). I just love my glimmer aura. So wonderful to be in effect blind for about 30 minutes. Isn’t biology grand!

  43. Actually, to correct a number of inaccuracies in your post, hypermobile patients should avoid yoga as it will exacerbate subluxations, also, cycling will put extreme pressure on your knees and thus is also to be avoided. finally, weight is in fact much less of an issue regarding joint stress than some other doctors may perhaps make it out to be.

  44. Wow grt article. . My name is Harry .
    I am a carrier of Eds .The only one in canada .. Unfortuneatly i have pass this genetic disease to all my children .. would like to talk to you via e mail

    I was sick my whole life to find out it was eds at the age of 53 . None of my parents or brothers have it .

    Which is called classic classifications. . Thier would not be enough room in this colum to share miniseries of a life time . Thanks .. thedalkners@hotmail.com

  45. Hey, I was wondering if your doctor gave you a score for how mild/moderate your case of EDS is. Mine gave me a mild score of 3 and I was wondering how our close our cases were to one another. There are a lot of things in this post that made me think that talking to my doctor would be a good idea.
    Thank you for talking about EDS. I know it is not always easy to get personal about pain, but it has helped me to understand that I am not the only one out there. I don’t know anyone else diagnosed with EDS. So thank you again.

  46. I have long admired your writing, and also have “mild to moderate” EDS, the hypermobility variant. I am a 34 year old female and was diagnosed at the age of 16 thanks to my very stubborn paediatrician who was determined to figure out what was wrong with me.

    Like you, there is nothing I hate more than being pitied because I have never pitied myself.

    Some of the symptoms I suffer from are the continual headaches even though my Chiari malformation is asymptomatic and there is no restriction of cerebral fluid, subluxations, constant chronic immflammation in all my joints (tends to be worse on the right side of my body likely thanks to a stroke I had as a child), severe autonomic dysfunction with no ability to regulate blood pressure or body temperature, very poor wound and bruise healing, very disturbed sensory system, regular nausea, scoliosis in my spine and very severe muscle spasms that look like convulsions.

    Luckily I live a fairly normal life thanks to several meds I take daily, and acute symptom meds when I’m not having a good day. For the most part,I manage to stay away from steroids and narcotics, even though I’ve had a kidney transplant when I was a toddler.

    Life isn’t easy, but I train and compete in Olympic style weigjtlifting with a very attentive coach who sees how my body is moving on any given day and makes adjustments to my workout and decides if I need extra days between sessions. I do get injured, and more often than others, but thanks to an excellent kinesiologist/chiropractor my soft tissue injuries heal much fast than they used to.

    I also work full time as a civil and electrical engineer. I have amazing health benefits, and live in Canada, which helps with the health care costs. I have a job that allows me to work from my couch when needed and restricts my time out in the field. I have an amazing husband and support system in place so that he does not always have to shoulder the whole load for both of us when I’m not doing well.

    Life is pretty damn good!

  47. Well, it looks like my super long comment was eaten by the system, but whatever. I’ve been through similar experiences like the ones you talked about, especially the headaches. Mine were finally (mostly) sorted out by seeing a chiropractor, and further with a book on self-adjustment.

    I also don’t have EDS as severely as some, but I just got awarded disability, so you should be grateful that you can still work and blog coherently! That doesn’t minimize your personal pain level, but I guess it means you’re better at coping.

  48. Thank you for writing such and honest, yet refreshing account of life with EDS. I too, am a unicorn! It took 13 knee surgeries, and giving birth to 3 adorable zebras of my own, to get our EDS diagnosis. Too bad circuses don’t look for contortionist families anymore….my family would be set! Lol.

    I hear you are speaking at Oasis in KC soon. I look forward to hearing you speak!

  49. My cousin, in high school, dislocated his shoulder by sneezing…and he does not have any zebra like, or even horse like, conditions.

    (here is the boring part) He was cooking, reached up to grab something, sneezed, and his shoulder dislocated. That was the 3rd or 4th time that he dislocated his shoulder. His doctor speculated that it might have been related to when he broke his collarbone as a toddler, he eventually had surgery on said shoulder and has had no more issues.

  50. Can you or others who have it please comment on how hypermobility EDS is diagnosed? I have a sister I strongly suspect has it but she has been told her blood test was negative. In my reading (because sometimes you turn to google for someone you love too) I came across an article that vlaimed there are blood tests for all types of EDS except hypermobility. Any comments?

  51. Anyone point me to any blogs/papers/suggestions about how to keep pushing for a diagnosis? I hear lots of people saying how long it took to get diagnosed; how do you keep going, and what do you say to the doctors? We live in a small town so I can’t keep switching to new ones, unfortunately…

  52. Thank you for writing this. I read this the day you posted it on facebook. Today I got my Ehlers Danlos diagnosis. As I read your article I cried. Your story is so close to my own. I have always been in the doctor’s office demanding more (advice, not narcotics 😉) out of my medical care. I did not know I had EDS until you posted. But your post means more to me than I could have dreamed possible.

    Thank you for your bravery, thank you for your snark and thank you for science.

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