Monday, February 21, 2011

Ehlers Danlos - You can have it and be "mild"

 I am writing about this today because I have an OVERWHELMING number of people coming to my blog that search and read my post about my migraines   I know it's pretty scary out there as you start to read about EDS and start to read the blogs, the message boards and think "OMG, do I REALLY have this thing.?"   Don't be afraid, attack it with knowledge, power and be ready to educate your physicians because they haven't heard of this disorder since med school!  (seriously)!

I thought I needed to add a post in here to tell more about my story of my EDS!

EDS is as different as a fingerprint.  I've learned that it affects each one of us differently.  I've also learned that there are SO many common traits.  I've found so many bizarre, unexplained pains an annoying things in my life are actually caused by my Ehlers Danlos!   Now the big thing here, I am a mild case!  I can run, ride a bike, swim, function daily. (most of the time).  My big thing is my migraines.  They are just debilitating! I've had migraines all my life!  In the last 10 years, I've lived on a pain scale of 1-10 (my pain scale I might add) of a constant 2 with flux to 8's sometimes 9's.  I can function with a solid 3 or 4 with no one knowing any different. I just take some drugs, and just deal with it.  If you read more of this blog, you will see that I've done triathlons and just took some of my migraine meds and went on my way.

EDS affects many of my joints, recently I learned the REASON I have my migraines is the lack of muscle control in my neck.  I've been doing physical therapy and I've gone from a constant 2, where I was taking pain meds 25 days a month to taking them maybe 2 or 3!!!  ( I feel like doing a cartwheel on this)!!!!  This is new in the last 3 weeks!

The EDS affects other joints that I used to just ignore. I thought it was old age, or wear and tear.  About 10 years ago, I thought I had arthritis in my knees.  I played volleyball in High School and sorta in College. I figured I just beat the crap out of them.  I had the obligatory scans/ xrays, etc.  I would have the normal 'arthritis' pain in the knees, they would ache, especially in weather changes.  The orthopedic doctor said "well you have loose joints, but I don't see any arthritis, have a nice day." - UGH.. If he had caught it then???

My hip also "falls out" all the time, I used to think this was kinda cool as a kid.  I would take my foot, wedge it under the screen door, and pull my leg out of its socket.  I could move my entire leg around. It really would "feel good."  Later in life (well like 3 months ago), I learned that this was REALLY bad for me, and I was further breaking down this connective tissue and just killing that socket. That joint socket continues to bother me and it continues to fall out on its own!     I've learned through physical therapy that I need to strengthen the muscles around it to hold it in place.  Clamshells (painful but effective). I will write about the exercises in a post.

Another area that drives me crazy is my feet!  This is one that I can't ignore the pain.  The bones on top of my feet fall out of place and crumble on top of each other, I can't put them back and I have to wait until they go back. I can't walk properly, so I walk on the outside of my feet and I look stupid!  I can't really complain though, because as I say, I have a mild case of it, and you wouldn't know by looking at me, or by really my daily activities.

My right shoulder also doesn't stay where it belongs.  I joined an awesome facebook group about EDS and a woman posted a funny message to her shoulder - and man I feel the same way and it pretty much sums it up  "Dear Shoulder, how I wish when I wake up in the morning you would be where I left you the night before. I do hate the search and rescue mission in the morning."  I have learned that I have to really CONCENTRATE on my posture.  It is not second nature for me (or most with EDS).  I am not aware of my body and when I think it's one place it really is NOT!  I wrote a little more about my PT and awareness in this post. and This post.  I learned that I hang 'end range' on my 'mouse' shoulder ( I bet more than EDS patients do).  I am constantly just stressing the joint out!  I'm working on it, but MAN it sucks spending HOURS and HOURS on that instead of the hours I need to be spending on my swimming, biking and running!

There are so many other aspects of EDS, not just our joints. Its connective tissue as well.  I'm lucky to not have the vascular type, but that doesn't mean I wasn't checked out.  I'm actually having another EKG tomorrow to re-check (just to make sure that I have no valve issues). I have to tell every physician that I go see that i have this condition.  I bring my Dr. Tinkle book with me as a reference.  I don't expect that they know what EDS is, I take the time to explain it and they 'vaguely' recollect it, and then they are typically eager to 'go look it up.'  This is exactly what happened with my cardiologist.  I actually have had an EKG, stress tests, etc in '07 for family history so I have the baseline.  I saw him, told him of the EDS.  He looked at me, but I approached it in the "hey you prob haven't heard of this since med school..." he said "hm hold on..." and he looked it up right there.  He said, well, even though we have the baseline and the 2nd check, lets look again just to be sure.  Then he started talking to me about it again, he was curious!  I have been hearing horror stories of Physicians asking EDSers to "do party tricks" this is asinine!  That's like asking someone with a compound fractured leg to walk on it so we can see the bone come out, just dumb.  Its one thing to see one or two things to check range of motion, but don't give in to some of that!  Get involved with the online support groups THEY RULE!  (See below for some links).

I went to the dentist the other day for my routine visit. I had called the day before and they actually planned for me, nothing changed really, but they did a full set of xrays to check my bone loss just in case.  EDS can cause people to lose their teeth (I mean just fall out).  It's nice to know a little ahead of time!  I have to say all of this planning is annoying for ME but prevention is really they key!

I plan to do the same thing when I get to the eye doctor later this year. I know I have symptoms in my vision, as I'm 37 years old and my prescription is STILL changing and I have a terrible astigmatism that continues to change.

Next on my list will also be to check the allergies, I have no idea if they're related but my migraines seem to be magnified when the weather changes.  I have ZERO post nasal drip, or any other outward sign of allergies, no coughing, sneezing, eyes watering, etc, just the increase migraines intensity when the weather changes.  Odd but now that I've connected with other EDSers, they have the same symptoms. It's amazing to connect with people that have the same thing here, especially since we're so RARE!  Its so great to know I'm not alone, and to ask people "hey do you have X or Y."

Here is the facebook community for:
Ehlers Danlos Type 3 (hyper-mobility) 
Ehlers Danlos Foundation- On the discussion page you can find local community.

If you have questions please "like" my facebook page FatGirl Ironman Journey" - you can find "me" on the left as an admin, send me a message if you would like!  This blog isn't about my EDS, but I certainly have EDS!  I really do believe that there are LOTS more of my 'mild' EDS versions out there!  I'd love to help people preserve their joints; to stop using them in counterproductive ways so they don't end up in lots of pain!

I do not want to write two different blogs, but due to the # of people finding me BECAUSE Of  my migraine EDS post, I feel the need to post this!  I will try to post these once in a while!  Please feel free to contact me via the facebook page listed above!


  1. My geneticist said it was a spectrum disorder, I have type VII and possibly type X. (If I cough too hard all the blood vessels in my face burst :O)

    The thing about the toes is crazy, I have that where if I get cold they will seize up and randomly dislocate and I can't get them to go back in and it's excruciating. My fingers all dislocate if I press too hard when cleaning also.

    My nose doesn't run either, it all collects and seals shut while I'm sleeping and I wake up and I can't breathe, it's really terrifying.

  2. Hi, Great post! It's pretty doom and gloom reading posts on the web most of the time. Although it can be helpful to read other peoples stories one must remember that, most of the time, the people who are severely effected are the ones posting so one should not map their lives onto someone else's because things improve for 60% of people with EDS and don't get worse in 80% of people with EDS (the HM type) I have EDS and too many secondary things to go into. I don't dislocate though my main problem are insertional tendinopathies that HURT. Anyway the reason I am posting is to address your headache's. I wonder if you have had a brain MRI? if the headache is coming from the base of your skull it could (I emphasise) COULD be Chairi malformation (common in EDS3). Just thought i'd post incase your headaches are still bad.

    1. hi I am just on the cusp of being diagnosed with EDS3 and have alot of pain in my neck shoulders and toas. I've been finding myself getting pretty down about it as i just have to wait for the bloods to come back to get treatment so I cant exercise in the mean time which i think is making it worse. anyway when looking it up, its all extreme cases that freak me out so much and i think are a major part of me getting down. your comment, especially "most of the time, the people who are severely effected are the ones posting so one should not map their lives onto someone else's because things improve for 60% of people with EDS and don't get worse in 80% of people with EDS (the HM type)" is like a little beacon of light, as well as this article. so thank you to both of you

  3. I'm just starting my journey. No diagnosis yet, but I'm pretty sure I have it. I have sooooo many symptoms. I'm kind of freaking out. I'm 46 and just figuring it all out. A life of pain and bizarre symptoms. And I suspect the bad type. I have (partially) clubbed feet and hernias that gonalong with it. I'm so scared.
    Thank you for this post.

  4. Hi! So, I haven't received an official diagnoses yet, but after my neuro kept saying that my hyperflexiness may be causing my migraines, I started to piece it together. I'm pretty sure I'd be a mild case too, if anything at all. My current symptom list includes:
    -Pulling both thumbs back to touch forarms
    -Bending elbows back past 10 deg.
    -chronic migraines (I agree, definitely the worst part)
    -gastroparesis (minor)
    -vocal cord disfunction/asthma
    -constant tendonitis and muscle strain type injuries and knee pain
    -4 breaks in the past 2 years
    -back pain and random 'shocks' that can debilitate me for 30 sec- a minute
    -Super high arches and history of walking pidgeon toed and on the insides of my feet
    -lots of popping joints, and I've been able to pop my jaw out of place for as long as I can remember
    -I haven't noticed it much before, but I think I do bruise easier than most people
    -No family history of eds in my family, but lots of heart problems so I'm not sure if that could be related.
    -I seem to need a lot more sleep than most of my friends. As a college student, most don't sleep very much, but I usually need ATLEAST 8 to even function, and I usually not even able to keep my eyes open long w/o 9.

    Am I right to continue to look into this? I'm about to start seeing a sports medicine pt for peroneal tendonitis in both my legs, so I was thinking about bringing it up to them. Opinions?

    1. Most definitely, yes, continue to look into it. Minus the broken bones, I have pretty much the same exact list of symptoms and am probably around the same age (I just started college). I was diagnosed when I was fourteen, though, so I've known for quite a while now. This is the kind of thing that can really hurt you as you get older, so I would go ahead and ask whatever professional you can. I will say that doctors seemed to dodge the possibility of it for me, so ask several if you can. It took three to finally get someone that would look into it. I don't know if you've already met with someone, but ask another doctor if yours told you it was nothing.

      Aside from physical therapy, which isn't really bad at all, my life is pretty normal, so don't be afraid to ask. Treatment for this isn't debilitating or scary for mild and moderate cases, so don't be like me and feel like you're condemning yourself to something horrible.

      Good luck with finding a diagnosis. If you have any questions, feel free to ask.