I’m stockpiling illnesses like they’re canned goods and I’m at Costco right before the apocalypse. I was going to say that I’m stockpiling illnesses like I’m a Newfie girl who just found a grocery store shelf full of mustard pickles, but I assume most of you won’t get that. And I don’t even really like mustard pickles, so I’m not sure why I thought of that.

I digress.

I went to see my lovely doctor yesterday, and after we had a chat about how much we love the musical Hamilton, I got to telling her about some of my weird joints and how a number of my symptoms just don’t feel like they fit under the lupus umbrella. There’s the hypermobile joints, the ridiculous muscle weakness and fatigue, the soft and kinda stretchy skin, and now the paralyzed tum-tum (that’s the more well known medical term for gastroparesis). Right away she said “you’re thinking about Ehlers-Danlos syndrome, aren’t you?” And I’ll admit, I was impressed. I have some bendy blogging friends with EDS who have had to wait YEARS to find a doctor who even knew what it was or I guess had the ability to spell it so they could check google. My doctor was like “oh yeah EDS…that old thing…” as if it’s as common as the cold. I’m lucky. So we had a chat about it, and she said that it seems to fit a lot of my symptoms. She said I would have Ehlers-Danlos syndrome type 3, which is the hypermobile type, and is less severe than the other types but is still a complete douchebag of an illness (she didn’t use those words, that’s all me). She gave me a “working diagnosis” of EDS and is putting in a referral for me to see a specialist who could officially diagnose it. The specialist in question will be a geneticist. I assume it will take 7 million years to get in and see one here in Newfoundland but in the meantime I can see a physiotherapist and an occupational therapist about my wonky body, so hopefully things can get a little less painful for me during the wait.

So now I’ve got 4 diseases on the punch card. I’m pretty sure if I get a 5th it comes with a free foot long sub, which will just make me sick because it’s too much food for my paralyzed stomach to digest (there are definite kinks in the system). Funnily enough, all of my friends’ reactions to this new EDS development is the punch card joke (and you know, checking to make sure I’m okay). My response to the punch card joke is “damn it I was just going to say that!” And my response to “are you doing okay?” is to tell people that I’m falling apart, but instead of saying it I kind of sing it because it makes me feel better about the whole thing.


I know a teensy bit about Ehlers-Danlos syndrome but I’m not an EDS guru the way I’m a lupus guru. Hopefully soon I will know more and can write an actual informative blog post raising awareness of this rare disease, but for now I only really have the Coles notes version. I know that it’s a connective tissue disorder characterized by loose joints and chronic joint pain. I know that there isn’t enough collagen in your body to make your joints and other things do the jointy things they are supposed to do, so it’s easy to have dislocations and hyperextensions. I know that it can cause a lot of gastrointestinal problems. I know it can be hard to use your joints a lot, and I have experienced this often. In university while writing my essay exams I used to have to tape my pen to my hand so I could hold it, because my hand got so tired after writing about 5 lines that I couldn’t close it around the pen any longer. And the joints in my lower body get super exhausted if I’m standing for too long. There are many other examples that I can’t think of right now because these things happen like 17 times a day for me. I know that, like lupus and many other chronic illnesses, some people can be minimally affected by it and others can have a more severe form of it. Ehlers-Danlos syndrome is a lot of other things too, and I’m still trying to figure that out. I know that people with EDS often refer to themselves as zebras, which I think is cool because I like zebras, but I’m not entirely sure where that comes from yet (someone help me out with that)?

If you have EDS type 3 and you like educating people on what EDS is, please please please educate me in the comments below. I would also love some links to blog posts about EDS. And also maybe we can be internet besties. Thanks!

Okay bye.

12 Comments on Say hello to my new nemesis, Ehlers-Danlos syndrome.

  1. Stephanie MacFarlane
    January 24, 2017 at 12:45 pm (7 months ago)

    Heyo!

    I also have EDS type 3, welcome to the zebra fam, friend!

    It sounds like you’re in the early stages of a diagnosis, but if you’re at all interested in travelling to see some folks really well-versed in EDS, you should ask your doc for a referral to the Maritime Connective Tissue Clinic in Halifax (http://themhc.ca/patient-care-information/connective-tissue-clinic/)! It’s one of the only ones in the country (if I’m not mistaken), and they’ve got pretty much everyone on staff. They were super great when I went in!

    As far as blog posts/online goodness, there’s actually a pretty rad community of folks with EDS online! These are some of the go-to sources that come to mind right off the bat (though I admit I’m probably missing folks):

    – The Ehlers Danlos Society (http://ehlers-danlos.com/)
    – Annie Seggara (@annieelainey on Twitter)
    – Bendy Pain Warrior (@CEitake on Twitter)
    – Folks @ The Mighty (https://themighty.com/?s=ehlers+danlos+syndrome)
    – The #ehlers danlos syndrome tag on Tumblr (SO many zebras on Tumblr)
    – The Atlantic Ehlers-Danlos Syndrome Society (https://www.facebook.com/atlanticedssociety/?fref=ts)

    There are definitely loads more, but like I said those are the ones that come to mind right away. There are SO MANY zebras (including me!) who will be more than willing to chat with you about all things EDS.

    Oh, and the zebra thing actually comes from a popular quote used by physicians – “When you hear hoofbeats, think horses, not zebras.” Since doctors are taught to look for the most obvious explanation of someone’s symptoms first, most of them aren’t likely to even think of rare conditions like EDS (the zebra), because they’re too busy looking for the horse!

    Sending love & luck battling your new nemesis! Would love to chat about it sometime!

    Reply
    • damselinadress
      January 24, 2017 at 12:46 pm (7 months ago)

      You are amazing! Thank you SO much for all the resources! I would love to have a chat sometime too!

      Reply
  2. Donna
    January 24, 2017 at 1:30 pm (7 months ago)

    Gosh I hope this gives you the answers and help you need. I can totally relate to the difficulty in standing for ages. I actually find standing a real challenge and have always put it down to fatigue and fibro… well maybe now Lyme… things.

    These things never come alone! I’m sure you’ll soon be the expert patient and I’ll learn loads from you. I hope you aren’t waiting for forever and a decade for your next appointment!

    Reply
  3. Catherine Richardson
    January 24, 2017 at 4:43 pm (7 months ago)

    Well someone else already explained where the zebra thing comes from! I actually just got home from an appointment with my geneticist who confirmed the suspicion of a lot of EDS folks, that EDS type 3 is not rare. She said it’s actually quite common, especially among women, to meet criteria based on hypermobility, but when other systems get involved it gets more tricky. She also said that EDS-3 has a lot of different causes and that’s why as of yet there’s no specific genetic test for it. The field of genetics is advancing it’s both fascinating and confusing haha. Anyway, I’m happy you’re going to see a geneticist so that you can hopefully set up the support you need to help you live with this and add a piece to the puzzle of what’s going on in your body 🙂

    Reply
  4. Gabe
    January 25, 2017 at 3:00 am (7 months ago)

    Your autoimmune system is a viscous beast! Hope you don’t have Raynaud’s as well. It’s not worth the free sub…

    Reply
  5. Britany W
    January 26, 2017 at 7:35 pm (7 months ago)

    I have EDS, but I have Classical type. It’s always nice to meet other zebras though, no matter what type they are!

    Reply
  6. Jayne
    January 27, 2017 at 4:27 am (7 months ago)

    EDS HT chick here with dysautonomia. Adrenaline and blood pressure related garbage are the worst things I deal with. Pleased to make your acquaintance Ms Lisa!

    Reply
  7. Emma
    February 1, 2017 at 4:13 pm (7 months ago)

    I am an Edser type 3 as well. I would be happy to chat and know quite a bit about it and blog about things related to it.

    Reply
  8. Seri
    March 1, 2017 at 1:17 am (6 months ago)

    Hi everyone. Firstly, i have never written about my illness before so i would like to apologize if this comment is too long or reads oddly ( discussing my illness makes me a bit anxious) I have been chronically ill for 6 yrs but i am still undiagnosed. The symptoms keep growing so i do my best to stay as healthy as possible; exercise if i am able etc. The latest possibility is EDS. I havent been tested yet. I was wondering if anyone could give me advice on whether what i have sounds like what they have. I know its not scientifically positive as a diagnosis but it might help me find the path to testing i may actually need. Ok so short list of symptoms : livedo reticularis. 2 arteries severed somehow in my legs. Tight pulsing tingling needle like or numb feeling in legs and sometimes arms/hands. Whatever i eat i slightly regurgitate then it sits and my left rib expands from pressure, gets hard to breath then i bloat and without laxatives i wont have a bm. Redundant sigmoid colon and a prolapse. Optical migraines and colonic inertia. Doctors start with the ok you had an eating disorder but i never have and never had psychological issues. I literally woke up one day in pain and it just keeps getting worse. Any help is really appreciated. Thanks for reading

    Reply
    • damselinadress
      March 1, 2017 at 10:35 am (6 months ago)

      Hi Seri, I’m really sorry you’re going through all of that! Being undiagnosed was definitely the hardest part of my illness before I started getting some answers. It’s so hard but I think you should keep getting more opinions from doctors and definitely fight for a diagnosis,which might mean asking for referrals for other doctors. You should look up gastro, and internal medicine specialists in your area to find ones that seem good and get referrals to see them. It took me MANY doctors and about 8 years to get my diagnoses.

      Reply
      • Seri
        March 1, 2017 at 11:48 am (6 months ago)

        Thank you for your insight. Unfortunately i am at the point where every gastro, vascular and rheumatological specialist i have seen has hit a seemingly dead end. I even did see a therapist because for a while i thought maybe it was all in my head but life reminds me its not lol. I just read about your engagement. Congratulations and thank you for talking about what you are going it gives hope to those of us who cant yet.

        Reply

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