Tuesday, October 19, 2010

A reason for the Migranes: Ehlers Danlos Syndrome

As many of you know, I have migraines.  I've had them for 30 years or so. Throughout my life I've figured out different reasons for some of them, and have reduced the severity and/or frequency of them. (eyesight, blood pressure, hormones, etc).  I've seen every specialist under the sun and had every test imaginable. Most doctors have just given me the shrug and I almost started to believe I was a hypochondriac. 

It was TRIATHLON that brought me to this answer!  During the Cohassett Tri, I met a woman during the run.  We got to chatting and she also had migraines.  We discussed the very similar symptoms, drugs,  and the fact that no doctor could figure out what the heck was wrong with us.  Randomly we also started talking about our hypermobility (aka my bar tricks).  I never in a million years thought the fact that I can bend my fingers backwards past 90 degrees, or the fact that my arms flip around would be a MEDICAL problem. And  that problem would  cause my migraines.  I never once thought to even tell my doctor about this!!!

Meeting this woman made me think "hm.. could they be related,  we both have migraines and hypermobility."  So I started to research, discussed with my doctor and he sent me to a Rheumatologist. Friday I was finally given an answer: Ehlers Danlos Syndrome - type 3 (hypermobility). **EDS is a Genetic Disorder of the connective tissues**   Unfortunately this is a diagnosis that doesn't have a genetic test, it has just symptom testing.  I will never be 100% sure, but no one with this type is.  I do have all the signs though.

The more I read about it, the more I have "AH HA" moments.  So many things are making more sense to me.  My back and hips always hurt; the bones always "fall out of place" (this is what causes my migraines).  Occasionally my hip will literally dislocate and I have to put it back. As a kid I used to use the screen door to do put the hip back.   Also on occasion the bones in my feet slip out of place and I have a really difficult time putting those back. This just makes me have to sit down for a while and massage my feet.  I just thought I was "super-flexible." 

I see a chiropractor weekly and during times of intense working out, I see my massage therapist often.  Turns out the myofacial releases are very typical and good for EDS.  Also, everything I have been doing has preserved my joints.  There is no cure nor is there a treatment for EDS.  Being athletic is helping and will allow me to stay at the pain level I am now.  Unfortunately there are others out there with EDS that are in constant joint pain and premature osteo-arthritis that can't be stopped. They continually dislocate their joints and can require braces and/or wheelchairs!  This is just more motivation to me to stay in shape (and now get the weight off the joints).

I suspect I will write a lot more about this as I continue on my journey.  I now have a reason for my pain other than "I'm a wimp" or "I'm out of shape" - I don't plan on using it as an excuse, but its nice to know that I'm not insane, or a hypochondriac- just a little odd :).

***updated 2/21:  This post gets a ton of search hits from Ehlers Danlos + Migraine people.  Please see this post as well for additional info, I wrote more info about me and my plight!

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  1. Wow, good find! The EDS sucks of course, but at least you have the answer.

  2. WoW! I could have written this. Except..since my diagnosis with EDS I have been told that I should never run again and that all my activity has done me more harm than good. The chronic dislocations have caused "traumatic arthritis" (i think thats what the rhuematologist said,I kinda stopped listening after the never run again part) Also I have been told to definitely NOT have chiropractic care.

    But if it works for you keep at it.... I miss triathlon training but kinda enjoy not being in pain ALL THE TIME.

  3. Jennifer, I wish I could contact you. If you can "like" the facebook page above - or email me though the profile. I've found a ton of conflicting information and the common misconception is to 'stop' exercising. Its the movements that are important. I do Chi-running, and most neurologist frown upon chiropractic care, for some reason they just dont like each other.

    Purposeful movements, and very specific muscle engagement is extremely important to us. I found out that even though I was very strong, I had many muscles that were mush! & its the atrophy of the muscles that gets us EDSers in the end. I do need to write a post about this, just been so stuck in the middle of it...

  4. I can do all this things on this pics since I was a kid and I never thought that something was wrong with me O.O

  5. I can't believe I'm just now finding this blog and your journey. I was "diagnosed" this fall (due to insurance fears/future employment concerns my official diagnosis is "chronic hypermobility syndrome", which is actually another title for EDS Type 3, but my physicians have agreed that it's EDSIII!) after an increase in symptoms, and I am so happy to be able to read about your symptoms and how you overcome so many of the things that I struggle with. I was a ballet dancer until the chronic pain began (acute pain from dislocations had occurred throughout childhood as commonplace; every woman in my entire family has issues with dislocations/subluxations, which is not surprising since it's often hereditary!), and ever since have been trying to battle my desire to be active with the pain any activity will inevitably cause. As a college student, I am constantly trying to go full-throttle and am slowly coming to terms with the fact that exercise can't be one of those things for me, unless I want to compromise my ability to sit up straight and do my homework for several days!

    I just wanted to let you know that your regular affirmations of "It's better to finish last than to never have begun" are so inspiring to me. I know that you've tried hard not to make this an EDS blog, and that is laudable since it feels like I have to explain to everyone my excuses for going slowly and steadily, but your insistence on focusing on what you *can* do as opposed to the reasons why you *can't* do things absolutely lifts my spirit. And I do appreciate when you do talk about your struggles with EDS!

    I was in the Boston EDS facebook group for a while this spring but it eventually got too negative for me- I remembered your name from there and was so excited to go through your blog! Thank you so much for your posts and for being so incredibly honest and grounded. I'm so sorry that this comment was so long, but I'm just so consistently heartened by your advice and journey to become an IronWoman!! :)

  6. Jo-Ann June 20, 2013
    I have been researching "rheumatologic diagnosis of hypermobile joint syndrome" and much to my surprise came across sites that define this condition synonymously with Ehlers-Danlos Syndrome Type III, hypermobility. I finally have found information and people who have been experiencing the same thing, migraines and hypermobile joints. Thank you for this posting. I so appreciate finally understanding that what appeared to the medical world to be separate conditions are, in fact, all part of the same syndrome. I also have mitral valve prolapse, exfoliation glaucoma, reflux, IBS, and some of the other symptomatology identified. I have also been using physio, massage, and a rehab program to try to keep my muscles/core as strong as possible to help stabilize the joints and reduce the incidents of subluxation.

    I am interested in hearing of anyone who has a child with this condition. My nephew was born with an undiagnosed genetic condition and I am wondering if he had a more severe case of Ehlers-Danlos syndrome. He was born mentally and physically challenged. He didn't walk until he was 3 1/2 yr. old, he never spoke, and he had a heart condition. He had very long extremities and long fingers and was quite thin.(the "marfan-like" look about his features) I would be very interested in hearing from anyone who has a child with similiar diagnoses. My email is joannlawson@shaw.ca

    Thanks again for sharing your story. I am better equipped to research this now.

  7. Thank you! I have Hypermobile/Vascular EDS and terrible, terrible migraines and a neurologist finally put it all together after years of doctors treating them as tension headaches.

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